THE ROUTLEDGE HANDBOOK OF HEALTH

COMMUNICATION

A foundational text in the field, this new edition of The Routledge Handbook of Health Communication
provides students and scholars with a comprehensive survey of the subject’s key research foundations
and trends, authored by the discipline’s leading scholars.
The third edition has been completely updated and reorganized to guide both new researchers and
experienced scholars through the most critical and contemporary topics in health communication
today. There are eight major sections covering a range of issues, including interpersonal and family
health communication; patient-provider communication; healthcare provider and organizational
health communication; mediated health communication; campaigns, interventions, and technology
applications; and broad issues such as health literacy, health equity, and intercultural communication.
Attention also is devoted to foundational issues in health communication, such as theory and
method; multidisciplinary, interdisciplinary, and transdisciplinary communication research; research
translation, implementation, and dissemination; and narrative health communication. There is new
attention to policy and NGOs, the environment, public health crises, global health, mental health
and mental illness, and marginalized populations such as Black, Latinx (a/o), Native/First People,
and LGBTQ+ individuals, as well as the multiple challenges health communication researchers face
in conducting research.
The handbook will continue to serve as an invaluable resource for students, researchers, scholars,
policy makers, and healthcare professionals doing work in health communication.

Teresa L. Thompson is Professor Emeritus of Communication at the University of Dayton, USA.

She edits the journal Health Communication.

Nancy Grant Harrington is Professor in the Department of Communication at the University of

Kentucky, USA.
ROUTLEDGE COMMUNICATION SERIES
Jennings Bryant/Dolf Zillmann, Series Editors

Selected titles include:

THE MEDIA HANDBOOK, 7TH EDITION

A Complete Guide to Advertising Media Selection, Planning, Research, and Buying
Helen Katz

MEDIA EFFECTS, 4TH EDITION

Advances in Theory and Research
Edited by Mary Beth Oliver, Arthur A. Raney, and Jennings Bryant

COMMUNICATION RESEARCH MEASURES III

A Sourcebook
Edited by Elizabeth E. Graham & Joseph P. Mazer

POLITICAL PUBLIC RELATIONS: CONCEPTS, PRINCIPLES AND APPLICATIONS,

2ND EDITION
Edited by Jesper Strömbäck and Spiro Kiousis

AFRICAN AMERICAN COMMUNICATION, 3RD EDITION

Exploring Identity and Culture
Edited by Ronald L. Jackson II, Amber L. Johnson, Michael L. Hecht and Sidney A. Ribeau

HANDBOOK OF VISUAL COMMUNICATION, 2ND EDITION

Theory, Methods, and Media
Edited by Sheree Josephson, James D. Kelly and Ken Smith

THE DYNAMICS OF PERSUASION, 7TH EDITION

Communication and Attitudes in the 21st century
Richard M. Perloff

THE ROUTLEDGE HANDBOOK OF HEALTH COMMUNICATION, 3RD EDITION

Edited by Teresa L. Thompson and Nancy Grant Harrington

For a full list of titles please visit: www.routledge.com/Routledge-Communication-Series/book-series/RCS.

 THE ROUTLEDGE
HANDBOOK OF HEALTH
COMMUNICATION
THIRD EDITION

Edited by Teresa L. Thompson and

Nancy Grant Harrington
 Third edition published 2022
by Routledge
605 Third Avenue, New York, NY 10158
and by Routledge
2 Park Square, Milton Park, Abingdon, Oxon, OX14 4RN
Routledge is an imprint of the Taylor & Francis Group, an informa business
© 2022 Taylor & Francis
The right of Teresa L. Thompson and Nancy Grant Harrington to be
identified as the authors of the editorial material, and of the authors for
their individual chapters, has been asserted in accordance with sections 77
and 78 of the Copyright, Designs and Patents Act 1988.
All rights reserved. No part of this book may be reprinted or reproduced or
utilised in any form or by any electronic, mechanical, or other means, now
known or hereafter invented, including photocopying and recording, or in
any information storage or retrieval system, without permission in writing
from the publishers.
Trademark notice: Product or corporate names may be trademarks or
registered trademarks, and are used only for identification and explanation
without intent to infringe.
First edition published by Lawrence Erlbaum Associates 2003
Second edition published by Routledge 2011
Library of Congress Cataloging-in-Publication Data
Names: Thompson, Teresa L., editor. | Harrington, Nancy Grant, editor.
Title: The Routledge handbook of health communication / edited by
Teresa L. Thompson, Nancy Grant Harrington.
Description: Third edition. | New York : Routledge, 2022. | Includes
bibliographical references and index.
Identifiers: LCCN 2021015064 (print) | LCCN 2021015065 (ebook)
Subjects: LCSH: Communication in medicine—Handbooks, manuals, etc. |
Physician and patient—Handbooks, manuals, etc.
Classification: LCC R118 .H26 2022 (print) | LCC R118 (ebook) | DDC
613—dc23
LC record available at https://lccn.loc.gov/2021015064
LC ebook record available at https://lccn.loc.gov/2021015065
ISBN: 978-0-367-48895-6 (hbk)
ISBN: 978-0-367-48744-7 (pbk)
ISBN: 978-1-003-04337-9 (ebk)
DOI: 10.4324/9781003043379
Typeset in Bembo
by Apex CoVantage, LLC
 To Connor and Colette. With love, Mimi.
TLT
To equity, justice, and reason. May they one day prevail for all.
NGH
Dedicated to all the many loved ones and fellow scholars whom we have lost
during 2020 and 2021.
 CONTENTS

Forewordxii
Prefacexvii

SECTION I
Introduction1

1 The Multidisciplinary, Interdisciplinary, and Transdisciplinary Nature

of Health Communication Scholarship 3
Elisia L. Cohen

2 Theoretical and Methodological Matters in Health Communication:

Navigating Current and Future Directions 17
Nancy Grant Harrington, Diane B. Francis, and Aurora Occa

3 Research Translation, Dissemination, and Implementation 33

Janice L. Krieger, Donghee Lee, Melissa J. Vilaro, Danyell
Wilson-Howard, Aantaki Raisa, and Yewande O. Addie

4 Narrative Features, Forms, and Functions: Telling Stories

to Foster Well-Being, Humanize Healthcare, and Catalyze Change 47
Lynn M. Harter, Jill Yamasaki, and Anna M. Kerr

SECTION II
Interpersonal and Family Health Communication 61

5 Mental Health, Mental Illness, and Suicide 63

Rosalie S. Aldrich and Jessie M. Quintero Johnson

vii
 Contents

6 Stigma, Communication, and Health 77

Xun Zhu and Rachel A. Smith

7 Health and Relational Outcomes for Informal Caregivers

and Care-Recipients 91
Jacquelyn Harvey, Meara H. Faw, and Elizabeth S. Parks

8 Family Health Communication 105

Maureen P. Keeley and Lauren Lee

9 Palliative Care and End-of-Life Communication 119

Elaine Wittenberg and Joy V. Goldsmith

10 Social Support, Supportive Communication, and Health 136

Erina L. MacGeorge and Yanmengqian Zhou

11 Everyday Interpersonal Communication About Health

and Illness 149
Katharine J. Head, Jennifer J. Bute, and Katherine E. Ridley-Merriweather

SECTION III
Patient-Provider Communication 163

12 Mutual Persuasion as Patient-Centered Communication 165

Jennifer Freytag and Richard L. Street, Jr.

13 Difficult Conversations Between Healthcare Providers and Patients 179

Allison M. Scott

14 Improving Clinician and Patient Communication Skills 194

Brianna R. Cusanno, Nivethitha Ketheeswaran, and Carma L. Bylund

15 Patient-Provider Communication and Health Outcomes 213

Kelly Haskard-Zolnierek, Morgan Snyder, Rabecca-Kimberly Hernandez, and
Teresa L. Thompson

SECTION IV
Healthcare Provider and Organizational Health Communication 227

16 The Multiple Voices of Communication in Healthcare 229

Margaret F. Clayton, Pearman D. Parker, and Lee Ellington

viii
 Contents

17 Interprofessional Communication: Healthcare Teams,

Patient Handoffs, and Multiteam Systems 244
Kevin Real, Anne Ray Streeter, and Marshall Scott Poole

18 Stress and Burnout: A Review of Research in Health

Organizations259
Jennifer Ptacek and Julie Apker

SECTION V
Mediated Communication 275

19 Health and Media: The Impact of News and Entertainment 277

Katherine A. Foss

20 Consumer Advertising and Health Communication 290

Michael Mackert, Deena Kemp, Daniela De Luca,
and Rachel Esther Lim

21 Social Media and Health 304

Yan Tian and James D. Robinson

22 Health Misinformation 318

Xiaoli Nan, Yuan Wang, and Kathryn Thier

SECTION VI
Campaigns, Interventions, and Technology Applications 333

23 Public Health Communication Campaigns 335

Kami J. Silk, Tara L. Smith, Charles T. Salmon, Brandon D. H.
Thomas, and Thanomwong Poorisat

24 Community-Based Health Interventions 353

Taylor Goulbourne, Charles R. Senteio, Kathryn Greene,
and Itzhak Yanovitzky

25 Technology-Based Interventions for Health Promotion and Disease

Prevention and Treatment 367
Jessica Fitts Willoughby

26 The Role of Technology in Health Communication: Trends

and Trajectories 381
Ronald E. Rice, S. Shyam Sundar, and Hyang-Sook Kim

ix
 Contents

SECTION VII
Overarching Issues in Health Communication 397

27 Health Information Seeking 399

Nehama Lewis, Nancy Shekter-Porat, and Huda Nasir

28 Inroads Into Healthy Decision-Making: The Role of Health Literacy

in Health Communication 412
Sarah A. Aghazadeh and Linda Aldoory

29 Communication, Health, and Equity: Structural Influences 426

Kasisomayajula Viswanath, Rachel F. McCloud, and Mesfin A. Bekalu

30 Intercultural Health Communication: Rethinking Culture in Health

Communication441
Elaine Hsieh

31 Global Health Communication 456

J. Douglas Storey

32 Public Health Crises 475

Lindsay Neuberger and Ann Neville Miller

33 Communicating About the Environment and Health 489

Amy E. Chadwick

SECTION VIII
Challenges and Challenging Contexts in Health Communication
Research and Practice 505

34 Ethical Issues in Health Communication in Clinical

and Digital Settings and in Health Communication
Campaigns507
Nurit Guttman, Eimi Lev, and Maram Khazen

35 Rethinking Imbalances of Power Through Health Communication:

Challenges for Scholars, Practitioners, and Activists 522
Angela Cooke-Jackson, Andrew Spieldenner, Nicole Hudak,
and Crystal Ben

36 Conversation Analysis and Health Communication 539

Kristella Montiegel and Jeffrey D. Robinson

x
 Contents

37 Advancing Health Communication Research: Issues and Controversies

in Research Design and Data Analysis 558
Ilona Fridman, Brian G. Southwell, Marco Yzer, and Michael T. Stephenson

38 Health Communication Research and Practice at the Level of

Government, Foundations, Public Policy, and NGOs 572
Bradford W. Hesse

39 Challenges in Conducting Health Communication Research 587

Amy Koerber and Avinash Thombre

Index601

xi
 FOREWORD

Who could have imagined that the third edition of The Routledge Handbook of Health Communication
would be written in the midst of a global pandemic, the likes of which even science fiction had not
pictured? With the events surrounding COVID-19, the realities of challenges related to communi-
cating about health emerged in families, communities, organizations, and governments and among
experts. Tensions relating to how best to balance safety with living caused conflicts about decisions in
every sector of life. Suddenly, the taken-for-granted daily routines of going to school, work, worship,
and the grocery store, together with recreational and pleasure activities, could no longer be mind-
lessly pursued. Arguments about responsibility, inequalities, and omnipresent injustices flamed before
us both figuratively and literally. Health communication researchers and teachers appeared among
the experts making efforts to offer useful guidance to decision makers in communities, organizations,
and governments, as well as behind the closed doors of their own families. Some of these experts
have contributed to this volume, offering a sense of the scope of a discipline whose growth makes
this edition both timely and significant. The contributions reflect the domains of communication
science and rhetoric, public health and risk communication, medical interaction, and the realm of
self-management associated with wellness and well-being, reflecting the membership of organiza-
tions such as the Society for Health Communication (www.societyforhealthcommunication.org/).
The research reviewed for this edition might be viewed as revolutionary in its efforts to under-
stand health communication and to explain and predict related outcomes. The first edition focused
on health communication primarily in terms of strategic efforts to harness knowledge and skills
relating to the use of media and collaboration with organizations, communities, and healthcare
providers to explain and predict outcomes associated with communicating about health (Thomp-
son et al., 2003). By the second edition, fewer assumptions appeared regarding the likelihood of
communication predicting widespread success in changing policies or habits related to health and
well-being, acknowledging the need for more interdisciplinary research that could transcend the
boundaries and vocabularies of ancillary disciplines (Thompson et al., 2011). This edition reflects an
overarching truth regarding health communication: Efforts to promote science and health literacy
commingle with efforts to avoid threats to identity and stigma associated with labels and diagnoses.
To accompany this dictum, the third edition explicitly includes mental health as an addition to health
communication topics comprising well-being.
From difficult conversations about health to innovations in technology to making health and
care more accessible to efforts enriching more ecologically valid methodologies, and more—health

xii
 Foreword

communication in this era acknowledges and even assists in the reconstruction of identities associated
with health status (Kelley, 2020). Upon reflection, I realize that this reality drew me to the field and
continues to motivate me to advocate for attention and study in health communication. As a gradu-
ate student studying the relatively new field of health communication in the early 1980s, I focused
my thesis on the failure of parents of newborns to follow a prescribed schedule for well-child exams.
My intuitive hypothesis was something like, “parents would not intentionally do harm to their chil-
dren by failing to take them for checkups.” Clinic observation and conversations with parents helped
me to make sense of realities that posed barriers to parental action. These included limited clinic
hours, which posed an explicit challenge to making and keeping appointments. Also, parents noted
that a lack of access to public or personal transportation to get to the clinic caused delays in follow-
ing pediatrician recommendations. Finally, they admitted that they forgot or procrastinated when it
came to making appointments for a child who appeared to be healthy. Some even mentioned their
reticence related to coming into a waiting area where other children appeared to be sick, exposing
their own children to possible illness. These realities did not make the parents negligent. Quite the
contrary; it suggests that they were active participants in their children’s health and care.
As I matured in my health communication career, my desire to conceptualize the nature of com-
municating about health led me to think in terms of societal, expert, and lay discourses occurring
in public health and risk communication, medical interaction, and messages associated with the
self-management of health and well-being (Parrott, 2004, 2009). This framework represents well the
scope of content in this third edition of The Routledge Handbook of Health Communication and reflects
the realities of what I learned from conducting my thesis research, reasoning through a disserta-
tion conducted via videotaping in a clinical setting and conducting formative evaluation research
in migrant and farming communities. Health communication emphasized in this volume illustrates
complex realities regarding implicit influences on health—the very ones that began to coalesce in
my understanding as I sat with, talked to, and observed parents in that thesis pediatric clinic setting.
I knew I could not address transportation, but I advocated for changes in clinic operating hours and
a separate space for well children to wait for appointments, expanding my focus for communicating
about health and leading to my decision to minor in health policy during my doctoral studies. I also
devised a wallet-sized reminder card with the schedule for well-child exams printed on it and sought
a parental pledge to follow the prescribed routines from parents in my treatment group, therefore
reinforcing their commitment. Thus began my lifelong pursuit of what so many health commu-
nication experts do and the contributors to this volume bring to light: attempts to make sense of
a situation, advocacy for change where appropriate, and applications of theory to support greater
understanding—which may or may not lead to action.
Health communication research and practice emphasizes the importance of avoiding blaming
and shaming individuals. This volume’s state-of-the-science reviews demonstrate progress in health
communication knowledge that may be applied to that end. The scope of this concern relates to
the common theme in health communication of focusing on personal behavior woven into many
modern health and healthcare messages, many of which state directly or implicitly that the absence
or presence of health and disease depends on individual practices. But the appeal goes far beyond
this in 21st-century efforts to gain participation with medical research, even in the case of altruistic
appeals such as, “If you are considering participating in human biospecimen research, thank you!
Although you will not materially benefit, you will be helping future patients” (https://biobankon-
line.com). The previous statement appears under the patients/donor link at the BioBankOnline site.
One critical focus for health communicators across the globe, brought glaringly into the light with
COVID-19, revolves around efforts to recruit participants for clinical trials. To date, I have partici-
pated in two clinical trials, one for a new medication and the other for analysis of post-surgery tissue
samples. Here, too, my experiences melded with textbook and field insights.

xiii
 Foreword

Public health and risk messaging may aim to translate the meaning of clinical trials and recruit
representative samples, but the language used to gain participation arouses barriers associated with
long-held beliefs and narratives regarding these studies. All depend upon our cooperation in giving
lifestyle information, family health histories, personal medical information, and biological speci-
mens. A centralized and accessible national repository of biospecimens to support future genetic and
proteomic research faces the reality that the deidentification of tissues makes it difficult to recontact
donors. Moreover, progression of a patient’s disease makes treatment based on new research unlikely
to be available during the course of a patient’s active disease. How to ethically gain participation in
research remains a challenge. In the process of cooperating by providing personal information, we
risk personal, social, employment, and insurance discrimination. Failure to communicate in ways
that consider these threats to identity makes health communicators complicit in exclusion, including
when such differences may relate to value systems (e.g., religious beliefs), cultural backgrounds, or
social group memberships, in addition to biology and genetic factors. At the same time, we should
take care not to perpetuate or reify myths of differences to close the gaps in medical research dis-
parities. Groups should not be treated as distinctive and important only because of their differences.
Each form of health communication needs to be examined for implicit and explicit ethical content,
especially those strategic communication efforts designed to promote and perpetuate a particular
course of action.
The efforts and effects related to disseminating knowledge about health and well-being continue
to comprise much health communication research, deservedly so, as we strive to “get it right.”
Toward that end, new insights emerge about gaps in health and science literacy, relating not only to
translating facts and figures but also the emotions that accompany these received translations, as well
as the failure to reach us with important information. A focus on social networks and environments
often dominates health communication research and programs because the evidence, as this volume
emphasizes, conveys the critical importance of such support. A focus on physical environments
emerges in policy debates, and public health policies that materialize as a result of such messages
illustrate the necessity of health communicators’ participation in these endeavors (Parrott, 2018).
Here, too, my own involvement afforded me unparalleled insights. As with so many contributors
to health communication knowledge included in this volume, pursuit of funding arises in part from
awareness of the value added, leading us to pathways that otherwise would not or could not have
been explored. Funding through the years from agencies such as the National Institute of Occu-
pational Safety and Health (NIOSH), the Centers for Disease Control and Prevention (CDC), the
National Institutes of Health (NIH), including the National Human Genome Research Institute
(NHGRI) and the National Cancer Institute (NCI), as well as the Association of Medical Col-
leges (AAMC), the Alpha-1 Foundation, and Pennsylvania’s Department of Health, afforded me
opportunities for collaboration and experiences that reinforced my impressions. These team efforts
became sites for reciprocal professional learning, enriching my understanding of inputs to health and
the possible roles for communication, while at the same time providing a platform to me to enrich
others’ understanding of same.
Health communication researchers also often serve as reviewers for funding agencies on grants
where health communication has been explicitly identified in a request for applications or appears
indirectly due to the applicants’ focus. As with funded collaborations, service as a reviewer for a
broad spectrum of agencies gives me a platform to introduce the field in its multidimensional forms
and functions, similar to this handbook. One of these agencies, the National Science Foundation
(NSF), calls on me to review within the risk communication area. Doing so reveals both the reach
of health communication efforts like those included in the citations in this handbook and the lack
of exposure for our work in so many realms. Service as a reviewer also illustrates the far-reaching
international ripple effects for work such as that summarized in this volume. For example, I served
as a reviewer for the Netherlands NWA-ORC, “the largest funding programme related to the

xiv
 Foreword

Dutch National Science Agenda” (https://fundament.eu/nwa-orc-insights-part-2-the-knowledge-

chain/). I also participated as a committee member for the National Academies of Sciences’ (NAS)
Institute of Medicine—now the National Academy of Medicine—in writing the treatise, Who Will
Keep the Public Healthy? Educating Public Health Professionals for the 21st Century (Gebbie et al., 2003).
Assembling the report involved hearing from countless experts and stakeholders—including admin-
istrators from universities offering public health degrees, whose accreditation could be affected by
the report. Each committee member had responsibility for drafting a section of the report that the
group read and debated and then guided IOM professional staff in requests for revisions. My focus
on communication assured that the curricula in national programs of study in public health would
include our discipline, although knowing how to achieve this aim would not be easy. Approaches
included adding faculty with doctorates in health communication or having some core courses add
content about health communication. Only time will tell how 21st-century public health profes-
sionals understand and use the kind of knowledge represented in this handbook. After serving on
the IOM committee, I received an invitation to serve on the NAS’ Board on Population Health and
Public Health Practice (www.nationalacademies.org/bph/board-on-population-health-and-public-
health-practice) and did so for four years. During that time, I reviewed some reports being drafted by
ongoing committees and professional staff’s work on such issues as agent orange, as well as vaccines
and autism. I also took my turn making presentations to other members of the board, explaining,
for example, the public’s reliance on narratives to explain difficult health concepts and experiences.
As an applied and interdisciplinary activity, health communication reaches far beyond academic
settings. In the United States, for example, the Centers for Disease Control and Prevention’s treatise,
Healthy People, has included health communication from its onset three decades ago:

Healthy People provides science-based, 10-year national objectives for improving the health
of all Americans. For 3 decades, Healthy People has established benchmarks and monitored
progress over time in order to: Encourage collaborations across communities and sectors;
Empower individuals toward making informed health decisions; and Measure the impact
of prevention activities.
(www.healthypeople.gov/2020/About-Healthy-People)

For the first time since its adoption in 1979 (www.cdc.gov/mmwr/preview/mmwrhtml/00001462.

htm), the Healthy People framework for providing a national prevention agenda included a chap-
ter on “Health Communication” in the 2010 objectives (www.ncbi.nlm.nih.gov/pmc/articles/
PMC1127182/). The 2010 final report states the goal of health communication as “Use communi-
cation strategically to improve health” (www.cdc.gov/nchs/data/hpdata2010/hp2010_final_review_
focus_area_11.pdf). As with the first edition of this handbook, the broad 2010 aim emphasizes
strategies to gain change in behaviors and policies. Both the second edition of this handbook and
the health communication objective in the Healthy People 2020 report reflect a realization that too
often efforts to inform and influence health knowledge and behavior do not reach people. As a
result, the report states,

Health information technology (IT) and health communication will be encouraged and
supported as being an integral part of the implementation and success of Healthy People
2020. Efforts will include building, and integrating where feasible, the public health IT
infrastructure in conjunction with the Nationwide Health Information Network.
(www.healthypeople.gov/sites/default/files/HP2020Framework.pdf)

As the development of Healthy People 2030 progressed, some combination of previous itera-
tions of communication relating to health appeared, including increasing the number of persons

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 Foreword

reporting that providers involve them in decisions and decreasing the number reporting that the
quality of communication with providers is poor, increasing the number of persons with broadband
access to the Internet, and using information technology to track healthcare data and communicate
with providers. The objectives further identified the goal of increasing the number of adults who
indicate that they have friends and/or family members they talk to about health and the number
of emergency and crisis messages that include steps to reduce personal threat, as well as expressions
of empathy and commitment to aid. The objectives also include roles for state health departments
and clinicians (www.healthypeople.gov/sites/default/files/ObjectivesPublicComment508_1.17.19.
pdf). These goals, like the third edition of this handbook, acknowledge a more nuanced framework
within which to conceive health communication realities. In the end, health communication may be
observed to be evolving, and a resource such as this volume aids efforts to keep pace with that evolu-
tion. Whether readers use this collection to enhance their own efficacy in research and teaching or in
tandem with efforts to promote public health or the public’s abilities associated with shared decision-
making, informed choice, and informed consent—this third edition of The Routledge H ­ andbook of
Health Communication should be a valuable reference.
Roxanne Parrott, Ph.D.
Distinguished Professor Emeritus
The Pennsylvania State University

References
Gebbie, K., Rosenstock, L., Hernandez, L., & Committee on educating public health professionals for the 21st
century (2003). Who will keep the public healthy? Educating public health professionals for the 21st century. National
Academies of Sciences Press.
Kelley, D. L. (2020). The person within the mask: Mask-wearing, identity, and communication. American Journal
of Qualitative Research, 4(3), 111–130.
Parrott, R. (2004). Emphasizing “communication” in health communication. Journal of Communication, 54(4),
751–787.
Parrott, R. (2009). Multiple discourses in the management of health and illness: Why does it matter? In
D. E. Brashers & D. J. Goldsmith (Eds.), Communicating to manage health and illness (pp. 322–338). Routledge.
Parrott, R. (2018). Health and risk policymaking. In R. Parrott (Ed.), Encyclopedia of health and risk message design
and processing (Vol. 2, pp. 105–133). Oxford University Press.
Thompson, T. L., Dorsey, A., Miller, K. I., & Parrott, R. (Eds.). (2003). The handbook of health communication.
Routledge/Taylor & Francis.
Thompson, T. L., Parrott, R., & Nussbaum, J. F. (Eds.). (2011). The Routledge handbook of health communication
(2nd ed.). Routledge/Taylor & Francis.

xvi
 PREFACE

Welcome to the third edition of The Routledge Handbook of Health Communication. The first edition,
published in 2003, was written to recognize how the field of health communication had developed
in the preceding 25 years and how it needed a comprehensive survey of the outstanding work being
accomplished by health communication scholars. The second edition, released in 2011, was written
to recognize the exceptional growth in health communication scholarship and how the handbook
had come to serve as an essential resource not only for communication researchers but also for
researchers in public health, medicine, nursing, and the allied health professions. With the passing
of another decade, the time was right to once again update our discipline’s central compendium.
For this third edition, we had two main goals in mind. First, of course, we wanted to provide
a comprehensive overview of the current state of the field of health communication. Given the
diversity of research, this was no small task. We reviewed the chapters in the first and second edi-
tions, considered how scholarship has been represented in our professional conferences and journals,
and developed a framework to present research across what are arguably the major foci in health
communication. Second, we wanted to ensure that this edition would represent the breadth and
diversity of scholarship in our field. This meant recruiting a broad range of scholars to write the
chapters and requesting that, in their reviews of the literature, they reflect on whether their selection
of work made an implicit argument about whose ideas are more or less relevant, whether the types
and sources of research they included reflected multiple ways of knowing, and whether the topics
connected to a wide range of experiences. In regard to style, we chose to capitalize ethnicities of
color but use lower case for white as a means to reject white nationalism while offering a tangible
act of solidarity to our sisters and brothers of color. For the authors reviewing bodies of literature on
specific topic areas (chapters in Sections II–VII), we asked in particular that they consider research
across scientific, interpretive, and critical-cultural paradigms as applicable and that they emphasize
how theory has guided work in their area.
This handbook is organized into eight sections. Section I addresses what we believe are founda-
tional issues in health communication. The chapters focus on the multi-, inter-, and transdiscipli-
nary nature of health communication research; core theoretical and methodological issues; research
translation, implementation, and dissemination; and the centrality of narrative in health communica-
tion. Section II reviews interpersonal and family health communication. Chapters explore concerns
ranging from mental health and illness to stigma to supportive communication and end-of-life
communication, as well as how issues of health communication pervade everyday life and influence
health and relational outcomes for informal caregivers and care-recipients. Section III focuses on

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 Preface

research on patient-provider communication. These chapters cover patient-centered communica-

tion, difficult conversations about health, clinician and patient communication skills training, and
health outcomes related to patient-provider communication. Section IV deals with topics related to
healthcare provider and organizational health communication. These chapters consider the range of
professions involved in the provision of healthcare, issues of interprofessional communication, and
stress and burnout. Section V turns to mediated health communication. Chapters delve into images
in news and entertainment media, consumer advertising, social media and health, and health misin-
formation. Section VI covers campaigns, interventions, and technology applications. These chapters
examine public health communication campaigns, community- and technology-based health inter-
ventions, and trends and trajectories in the role of technology in health communication. Section VII
involves broad issues applicable across multiple contexts. These chapters review health information
seeking, health literacy, health equity, intercultural health communication, global health communi-
cation, public health crises, and environmental communication. Finally, Section VIII considers both
challenges and challenging contexts in health communication research and practice. The first two
chapters address ethical issues and issues of power imbalance, and the remaining chapters concentrate
on methodological approaches and issues; health communication research and practice at the level of
government, foundations, public policy, and nongovernmental organizations; and the multiple chal-
lenges health communication researchers face in conducting research. Across these eight sections,
we have strived to provide an in-depth, comprehensive, state-of-the-science review that will provide
both a foundation for understanding and a launching pad for future research.
As with previous editions, this handbook is targeted toward the fields of health communication,
public health, nursing, medicine, and allied health, as well as the social-behavioral health sciences
writ large. Although it is primarily directed toward graduate students and faculty, it should also be of
interest to researchers and practitioners, healthcare providers, and policy makers.

Special Thanks
When we met with our publisher to discuss plans for the handbook in November of 2019, we had
no idea what the ensuing months would bring. Invitations to chapter authors went out in January
of 2020, a time when no one was expecting the world to go sideways in a matter of weeks. Authors
were lined up and on board before the World Health Organization declared COVID-19 a global
pandemic on March 11, 2020. This handbook was completed during the pandemic. It is only
through the dedication and grit of our authors that we were able to send the book to press during
the spring of 2021. We owe them a huge debt of thanks, and we want to acknowledge their steadfast
work in completing their chapters in the midst of all of the uncertainty and chaos, especially those
who faced personal hardship and loss during this time. There is nothing quite like a pandemic to
make clear the centrality of health communication in all of our lives.
In addition to thanking our wonderful chapter authors, we would like to thank Felisa Salvago-
Keyes, publisher, and Grant Schatzman, editorial assistant, for their support and patience throughout
this process. We are grateful to them and to Routledge/Taylor & Francis Books for making this third
edition of The Routledge Handbook of Health Communication possible.
Teresa L. Thompson
Nancy Grant Harrington

xviii
 SECTION I

Introduction
 1
THE MULTIDISCIPLINARY,
INTERDISCIPLINARY, AND
TRANSDISCIPLINARY NATURE
OF HEALTH COMMUNICATION
SCHOLARSHIP
Elisia L. Cohen

Problems in health communication, medical communication, and related communication systems

influencing health and well-being are complex. There is a need for researchers who have the skills,
competencies, and capacity to navigate the complex communication environments in which health-
care, public health, and medical and health information delivery take place. Navigating research is,
after all, a journey. Finding the answers to pressing health communication questions is not the only
goal of scholarship. As with any journey, there are times when the disciplinary questions offer well-lit
and straight roads within a familiar area of research. Other times we do not always know where we
are driving, but the thrill of meeting up with others who share an interest in the destination keeps us
moving. There are ups and downs, potholes and pit stops, along the way. Experienced travelers real-
ize that well-lit and straight roads do not always take us to the destination that gives us the view with
broadest visibility. A research partner may shed light on a road not well traveled but that provides
new perspective to scholarship. And there are often fun discoveries that would not be experienced if
we were not interested or willing to leave our car and to see new sites from an aerial view.
The journey to study the complex communication environments in which healthcare, public
health, and medical and health information delivery exist is not without challenge. The field of
health communication has evolved considerably in the past decade to offer multidisciplinary, inter-
disciplinary, and transdisciplinary pathways that support researchers’ goals. Each of these pathways
offers researchers different opportunities to engage in a journey based on the premise that knowl-
edge from a single disciplinary perspective is unlikely to address the complexities of the communica-
tion environments affecting individuals and populations.
The health communication field is also broad in its theoretical and methodological approaches
to scholarship. Unlike other communication specialty fields, its areas of study usually are of practi-
cal consequence to health and well-being. Many scholars take an ecological perspective, which
means that their work examines the relationship and connections between individuals, families, or
groups and the communities and broader physical, cultural, and social environments in which they
are situated. This orientation to studying the relationships and connections between people and
their environments leads scholars to conduct research involving multiple theoretical perspectives.
These theoretical perspectives, or intellectual principles, methods, and ways of explaining health
communication, stem from studies in the humanities, social sciences, and medical sciences. Health

DOI: 10.4324/9781003043379-2  3
 Elisia L. Cohen

communication scholars collaborate with those in other disciplines of public health, medicine, social
psychology, and business, among many others (Maibach & Holtgrave, 1995; Rogers, 1993). Given
the journeys that health communication scholars make to draw the field’s knowledge maps, this
chapter examines the multidisciplinary, interdisciplinary, and transdisciplinary nature of health com-
munication scholarship.
To identify the nature of health communication, scholars also characterize how research activities
reflect different paradigmatic perspectives, or worldviews that represent the concerns of scholarly
communities and their approaches to identifying and organizing evidence in support of their work.
Much work remains post-positivistic or scientific in its orientation and relies on quantitative data
due to its biomedical and public health influences (with an emphasis on measuring, predicting, and
controlling health behavior in individuals and populations). However, researchers examining the
meanings of health and well-being to individuals, communities, cultures, and healthcare systems
have brought interpretive and critical-cultural paradigmatic perspectives to the field. In so doing,
these scholars integrated an array of theoretical and methodological perspectives in their work. The
range in these approaches to health communication spans from relatively surface-level intersections
to deeper-level integration of knowledge from different disciplines.

Health Communication as a Multileveled, Collaborative Field of Inquiry

Given the scope of health communication work, questions within the field examine the influence
of communication processes at multiple levels (intrapersonal, interpersonal, group, organizational,
media, cultural, social systems) across a wide range of health contexts. An approach to research that
combines different insights from individual or micro-level, organizational or meso-level, and popu-
lation or macro-level approaches to studying health communication problems is called multileveled
research. Multileveled research considers the relationships between the ideas at different levels and
often utilizes different methods of gathering data to study the ideas at each level and the relationships
among them. Indeed, Schiavo (2013) defines health communication as

A multifaceted and multidisciplinary field of research, theory, and practice concerned with
reaching different populations and groups to exchange health-related information, ideas,
and methods in order to influence, engage, empower, and support individuals, communi-
ties, health-care professionals, patients, policymakers, organizations, special groups, and the
public so that they will champion, introduce, adopt, or sustain a health or social behavior,
practice, or policy that will ultimately improve individual, community, and public health
outcomes.
(p. 9)

The multileveled nature of health communication as an applied field of study drives scholars to draw
on multiple disciplines to inform the relationship between various communication and health and
well-being outcomes.
In the field of communication, researchers traditionally have drawn on a range of research activi-
ties at various levels to identify, critique, explain, predict, and understand relevant intrapersonal,
interpersonal, group, organizational, cultural, media, and social systems dynamics. For example,
when considering interactions between two people at the dyadic level, researchers have increas-
ingly explored the ways that social networks and social media provide context for understanding
interpersonal health communication (Duggan, 2019; Duggan & Street, 2015; Head & Bute, 2018;
see also Chapter 12, this volume). Group and organizational health communication scholars rely
on meso-level research to examine the relationships between individuals, groups, and organizations
to understand how individuals enact personal health identities in workplaces (Dailey & Zhu, 2017;

4
 Nature of Health Communication Scholarship

see also Chapter 17, this volume) and achieve individual and organizational health (Burke, 2016;
see also Chapter 18, this volume). Health communication scholars also have focused on culturally
centered work with community stakeholders to develop interventions accessible to communities
(see Chapter 24, this volume). Kaur-Gill et al.’s (2020) community-based heart health intervention
for low-income Malays is one such culturally centered study. The intervention curated heart-healthy
and Malay-centered recipes at the individual, micro level to develop at the macro, cultural level “cul-
turally responsible information infrastructures to understand myocardial infarction” (p. 16). Health
communication scholars studying the spread of health information through macro-level media and
social systems have worked to explain how online information systems enhance health outcomes
through communication convergence (Kreps, 2017), a process that occurs when individuals com-
bine mass media and interpersonal communication to meet their needs. Emerging scholarship also
uncovers how misinformation and disinformation shared through such systems can challenge public
health (Southwell et al., 2019; see also Chapter 22, this volume).
Scholars who import theories, perspectives, and research traditions from other disciplines into the
field of health communication are able to address a range of healthcare issues and health ecologies of
interest. Basic research in the field develops and tests theories to advance health communication sci-
ence. Such research takes a scientific paradigmatic perspective to discovery and may do so in public
health or medical communication contexts. However, health communication research is rarely pure
in its basic approach. Stokes’s (1997) book Pasteur’s Quadrant described how discoveries that bridged
the gap between basic theoretical research and applied research, like Louis Pasteur’s discovery that
germs cause disease, were most meaningful. Pasteur’s work developing new scientific knowledge of
microbes contributed to the scientific germ theory of disease. However, in its advancement of sci-
entific theorizing, it had a clear practical benefit—his theoretical insights led to the process we now
know as pasteurization that prevents illness in society. Research that is both strong in its practical
use-value and strong in its pure theoretical contributions, like Pasteur’s application of the pasteuriza-
tion process, is use-inspired research (Stokes, 1997).
Pasteur’s quadrant offers a classification of research seeking both theoretical understanding of
scientific problems and practical use for society. In such a quadrant, applied and basic health com-
munication research can be considered orthogonal, on the x and y axes, respectively (Stokes, 1997).
Such research inspired by use typically offers theoretically framed practical applications to address
a problem. Other research that is strong in theoretical application but weak in applied value may
be considered pure basic research. In contrast, research that is high in practical utility but weak in
theoretical, scientific advancement falls into the pure applied research quadrant.
The journey to advance knowledge often leads to destinations where researchers see immediate
social application. Many health communication scholars examine the ways that scientific theories
can improve health conditions in populations and individuals. As scholars work in communities,
there is a continual negotiation between the theory and practice through which health communica-
tors work. As health communicators situate their work within communities and cultures of practice
(see Chapters 24, 29–31, and 35, this volume), they take research journeys to understand, explain,
critique, and apply communication concepts within health settings. Along the way, they often are
challenged to reconsider their beliefs about medical systems and public health, as well as their sci-
entific approaches to practice. In so doing, they draw on these disciplinary ways of knowing (epis-
temological assumptions) and the researchers’ subjective values and beliefs (axiological assumptions)
underlying their relevant theories, concepts, applications, and perspectives.

Multidisciplinary Approaches to Health Communication Scholarship

The fundamental focus of multidisciplinary work in the field of health communication is investigat-
ing a common health problem by applying concepts from different disciplines to the problem. As

5
 Elisia L. Cohen

Harrington (2015) writes, “Multidisciplinary research in health communication involves research-

ers from multiple disciplines independently investigating the communication dimension of a health
problem” (p. 10, emphasis in the original). Fundamental to multidisciplinary research is how it draws
on more than one discipline to independently bring relevant skills from specialists in different disci-
plines to address multiple dimensions of a health problem through their independent investigations.
According to Parrott and Kreuter (2011), such research “may happen sequentially, building on the
scientific knowledge of one discipline’s findings to spark a hypothesis or research question in another
discipline” (p. 6) or it may involve simultaneous activities.
Classic cases of multidisciplinary research sequentially affecting health communication can be
observed when a scientific advance leads to an insight that then subsequently advances health com-
munication research. For example, biomedical research related to “preconception healthcare” (i.e.,
healthcare that women receive before becoming pregnant) revealed that starting folic acid supple-
ments at least one month before conception improves pregnancy outcomes and can prevent neural
tube defects (Brundage, 2002, p. 2507). That discovery in turn led the March of Dimes to develop
health promotion and communication activities to promote folic acid consumption to women of
reproductive age (Parrott & Kreuter, 2011). Other times, a policy goal or a change in public pol-
icy may lead to multidisciplinary research. For example, the United States’ Healthy People 2020
objectives led to Rutten and colleagues’ (2020) multidisciplinary health communication scholarship
examining reports where patient involvement in health communication falls short of those goals.
Alternatively, tobacco advertising restrictions and warning label regulations have led researchers to
develop interventions to correct misinformation about tobacco products (Cappella et al., 2015) and
examine the influence of these regulatory changes on public perceptions of health behavior out-
comes and health communication practice (Burton et al., 2010).
Simultaneous multidisciplinary research occurs when different members of the research com-
munity in different fields or subdisciplines independently examine communication problems that
confront them. Multidisciplinary settings and teams are common in the context of chronic illness
management and end-of-life care communication. In such situations, teams of researchers bring
their expertise in communication into a health or medical context. For example, Kerr et al.’s (2019)
research combines insights from family medicine and communication fields to explore how medical
specialists influence parental uncertainty during pediatric chronic illness care visits. Other examples
may be noted where health communication researchers bring expertise into an interpersonal, group,
or organizational context. For example, there are studies that have used a multidisciplinary approach
to investigate the interpersonal, group, and organizational dynamics supporting employees who
return to work after maternity and other disability leaves. Zhuang et al.’s (2018) multidisciplinary
team of researchers spanning the fields of communication, nursing, and ethics investigated the extent
to which interpersonal factors such as coworkers’ support or stigmatization of the mother influenced
the experience of returning to work.
In the field of public health communication, communication scholars have teamed up with
environmental scientists to examine the influence of translated scientific messages about perfluo-
rooctanoic acid, an environmental risk factor associated with breast cancer, on individual attitudes
and beliefs (Smith et al., 2017; see also Chapter 33, this volume). In Smith and colleagues’ (2017)
multidisciplinary research study, “biologists created knowledge, communication scholars translated
and tested messages, and advocates were participants and those who disseminated messages” (p. 279).
The resulting findings applied concepts from social psychology to identify how ability, motivation,
and processing led to risk beliefs. Specifically, the study identified how messages generating greater
involvement and ratings of heuristic cues (mental shortcuts used to make a decision; see Chaiken,
1980) led to perceptions of greater risk, and it offered lessons for message dissemination for the Dr.
Susan Love Research Foundation’s Army of Women (Smith et al., 2017).

6
 Nature of Health Communication Scholarship

At other times, researchers in the fields of medicine, nursing, public health, and pharmacy are
leading multidisciplinary investigations into communication phenomena independently. In the con-
text of the coronavirus pandemic, multidisciplinary approaches to tackle its many health communica-
tion dimensions are occurring simultaneously. The pandemic provided a context for identifying how
a multidisciplinary approach may help researchers uncover the priorities for understanding the inter-
secting mental health (psychological), sociological, political, educational, and public health dynamics
affecting return-to-work policy communication (Holmes et al., 2020). The relevant skills and exper-
tise from specialists in different disciplines’ understanding of intersecting mental health dynamics may
offer important independent contributions to policy recommendations and communication.

Interdisciplinary Approaches to Health Communication Scholarship

In contrast to when scholars independently work from multiple disciplines on a problem, when
they work jointly to address a common health communication problem it is called interdisciplinary
research. Interdisciplinary health communication scholarship results from scholars working together
to include theories, methods, and concepts from their disciplines in collaboration to address a prob-
lem. As Harrington (2015) explains, “Interdisciplinary research involves researchers from multiple
disciplines collaboratively investigating multiple dimensions of either a health problem in general or
the communication aspect of a health problem” (p. 11, emphasis in the original). The intention of
this type of scholarship is to transfer knowledge and connections from one disciplinary perspective
to another, facilitating innovation across disciplinary borders.
Interdisciplinary approaches to health communication message design and interventions are com-
mon (see Chapters 16, 18, and 23, this volume). For instance, a multidisciplinary team of com-
munication, psychology, and neuroscience experts collaborated to develop the sensation seeking
targeting (SENTAR) approach that became a foundational strategy for designing large-scale anti-
marijuana media campaigns (Palmgreen et al., 2001). The SENTAR approach recommends that
message designers and campaign planners create high sensation value (HSV) messages for high sensa-
tion seekers (HSS). This interdisciplinary perspective emerged as researchers developed and validated
measures of perceived message sensation value (PMSV) from their disciplinary understandings of
psychology and communication (Palmgreen et al., 2002). High sensation value messages typically
include the following qualities: “(a) novel, creative, or unusual; (b) complex; (c) intense stimuli that
are emotionally powerful or physically arousing; (d) graphic or explicit; (e) somewhat ambiguous;
(f ) unconventional; (g ) fast paced; and (h) suspenseful” (Noar et al., 2010, p. 24). As the team
built their research program, they moved from identifying the way that these HSV messages influ-
enced common behavioral and behavioral intention outcomes to also examining “the neural basis
of processing high- and low-message sensation value (MSV) antidrug public service announcements
(PSAs) in high (HSS) and low sensation seekers (LSS) using f MRI” (Donohew et al., 2018, p. 1004).
This line of research into sensation seeking also demonstrates how multidisciplinary efforts can
pave the way for interdisciplinary and disciplinary theoretical expansion. First, information response
and arousal were studied independently, resulting in multidisciplinary sensation seeking and psycho-
logical reactance research. Initially multidisciplinary teams studied the same phenomena (informa-
tion response and arousal) separately. Later these two lines of research were used together to predict
other health risks in emerging adult populations, including adolescent smoking (Helme et al., 2007).
The activation model of information exposure also established the individual differences approach
in information response and arousal that became foundational to later sensation seeking research
(Donohew et al., 1980; see also Chapter 27, this volume). Such research programmatically led
interdisciplinary teams to consider time perspective and sensation seeking as predictors of quitting
activity among smokers (Hall et al., 2012). A team of communication, psychology, and neuroscience

7
 Elisia L. Cohen

researchers took a similar approach to integrate personality and psychosocial approaches in designing
effective messages for safer sexual behavior (Noar et al., 2006).
Interdisciplinary scholarship journeys may involve crossing bridges between communication and
health professionals in different fields; such journeys often connect scholars from different fields
utilizing different approaches to gather data and build evidence-based practice. Such bridges are
common when observing the efforts of interdisciplinary research teams working to enhance demand
for immunizations and cancer screening in medically underserved communities (Bachman et al.,
2018; Cohen et al., 2016a, 2016b; Record et al., 2017; see also Chapter 35, this volume). For
example, using community-engaged research (see Chapter 24, this volume) and engaged elicitation
interpretive methods (Cohen & Head, 2013, 2014; Head & Cohen, 2012), researchers from the
fields of communication and public health worked together to identify effective messages to support
adolescent vaccination uptake (Cohen et al., 2015), young adult adherence to multidose HPV vac-
cination regimens (Vanderpool et al., 2013), and Pap testing to prevent and detect cervical cancer
(Vanderpool et al., 2013). The resulting community-based vaccine communication intervention tri-
als known as “1–2–3 Pap” (Vanderpool et al., 2013) and “Protect Their Future” (Cohen et al., 2018)
were implemented in community-based intervention trials; the implementation utilized scientific
evaluation methods requisite to documenting evidence-based interventions in the field of public
health. As an evidence-based intervention, 1–2–3 Pap was also designed for implementation and
dissemination beyond the immediate recruitment region for the initial intervention (Cohen et al.,
2015).
Interdisciplinary teams of researchers in communication and medicine have also worked together
to identify methods, concepts, and theoretical insights to address the problem of opioid drug pre-
scription communication. A team in communication and academic medicine interviewed trauma
and surgical residents and collaborated to analyze the multiple and competing goals in opioid pre-
scription communication and the tensions between opioid vigilance and patient-centered care and
communication (Adams et al., 2018, 2020). This type of research, which took an interdisciplinary
approach to the communication problem, is distinct from what could be offered by research from
the medical discipline alone. A medical disciplinary perspective may inquire into the “drivers, beliefs
and barriers surrounding surgical opioid prescribing” (Sceats et al., 2020, p. 86) focused on the act of
prescribing. In contrast, interdisciplinary consideration offered by Adams et al. (2018) examined pre-
scribing as a communication process where residents engaged in sensemaking processes to integrate,
transcend, or reconcile multiple and sometimes conflicting communication goals post-surgery. Such
an approach that bridges field-based knowledge in a collaborative manner is critical to developing
communication tools and interventions to improve residents’ prescribing routines.
Interdisciplinary research is also a common feature of studies of health-related organizational
and workplace processes. For example, collaborations between communication scholars and phar-
macists have helped provide guidance for organizational communication outcome assessments for
employer-based health interventions. Stephens et al.’s (2015) interdisciplinary research examined
how organizational identification (and belonging) influenced employees’ intentions to disseminate
health information to coworkers across a variety of organizational contexts. In so doing, the team
of researchers from communication, advertising and public relations, public health, and medical dis-
ciplines worked together to comprehensively assess individual attitudes, group identity, information
literacy, cardiovascular disease knowledge, health behaviors, and healthy heart employee-sponsored
health dissemination outcomes. Another example of an interdisciplinary team working together on
a set of health, design, and communication problems in organizational contexts can be seen in Real
et al.’s (2018) examination of how nursing communication and teamwork is affected by centralized
and decentralized unit design (see Chapter 17, this volume).
Finally, interdisciplinary research efforts through systematic reviews and meta-analyses of research
may also map a new field of health communication scholarship. One such recent example is the field

8
 Nature of Health Communication Scholarship

of communication regulatory science (Noar et al., 2019). In their effort to collaboratively expand
the evidence base of health communication investigations in this area, these researchers collabo-
rated to advance the field by (a) identifying health communication intervention strategies for non-
cigarette tobacco products (Cornacchione Ross et al., 2019) and smokeless tobacco (Wackowski
et al., 2018), (b) developing point-of-sale interventions and campaigns for non-cigarette products
such as cigarillos and waterpipe tobacco (e.g., Sutfin et al., 2019), (c) testing product warnings and
potentially lower risk information communication (Mays et al., 2018; Moran et al., 2018; Noar
et al., 2017), and (d) evaluating the effectiveness of interventions related to modified risk statements
and warnings and potentially lower-risk tobacco and e-cigarette products (Katz et al., 2017).

Transdisciplinary Approaches to Health Communication Scholarship

More integrated than multidisciplinary and interdisciplinary research strategies is the transdiscipli-
nary approach to research. As Harrington (2015) notes, “Transdisciplinary research is research that
spans disciplinary boundaries to create new theories and methods that integrate knowledge from
multiple disciplines to address complex social problems” (p. 13). Such an integrated approach gener-
ates new hypotheses, theories, frameworks, models, and methodological applications to transcend
disciplinary ways of knowing. Transdisciplinary research is often stakeholder oriented (Bracken
et al., 2015), and a driver of such research is the demand for timely, innovative responses to complex
social problems. When researchers work at the intersection of collective disciplines, they may more
fully grasp complex theoretical mechanisms and craft novel or accelerated solutions to collectively
identified problems (Cram & Phillips, 2012).
Although explorations in communication and health that truly integrate knowledge and create
new theories and methods are rare, the nexus between the disciplines of communication, public
health, and medicine has generated significant transdisciplinary outcomes. The goal of transdiscipli-
nary team research is to bring a “total knowledge” framework or approach to create comprehensive
research questions typically from natural, social, and health communication scientific perspectives.
Often researchers begin working together in an interdisciplinary context before generating rela-
tionships and understandings of common approaches that can address complex health problems. As
Treise et al. (2016) detail, “The benefits of transdisciplinary collaboration for addressing complex
health problems are widely accepted; however, acknowledging the bumps and twists along the road
that are inherent in those collaborations is often considered taboo” (p. 194). In building an explic-
itly transdisciplinary STEM science center at the University of Florida, communication-trained
researchers in a College of Journalism and Communications and medical researchers in a College of
Medicine offered a model of best practices for team science, interdisciplinary research, and, in the
longer-term, integrated research collaborations (see Chapter 3, this volume). The aforementioned
interdisciplinary research efforts work to establish transdisciplinary structure to support multidisci-
plinary, interdisciplinary, and transdisciplinary project engagements. However, the case of tobacco
regulatory science mentioned earlier, where a field of knowledge developed from various interdis-
ciplinary teams’ work around related topical research questions, does demonstrate how a heteroge-
neous, collaborative community can potentially synthesize shared knowledge around a common
problem or application (Noar et al., 2018).
Evidence of truly transdisciplinary approaches and outcomes from health communication schol-
arship is rarer in the field. Such complex scholarship typically occurs when research from multiple
disciplines is not only valued but also offered to provide a perspective that could not be gained on a
phenomenon in isolation. One clear example is Street’s research with colleagues in medicine, psy-
chology, and oncology to develop communication skills training for clinicians (see Chapters 12 and
14, this volume). Street et al. (2019) examined cancer survivors’ communication experiences when
there were “breakdowns” involving a clinician or healthcare organization. The resulting research

9
 Elisia L. Cohen

examined the dimensions of patient-centered communication breakdowns that affect patients’ can-
cer care and identified the ways clinicians and healthcare organizations can assess, provide for, and
satisfy their information and emotional needs.
The complex phenomenon of pain management in the intensive care unit is another context
where researchers have taken an integrated approach toward understanding effective strategies for
therapy. As Mularski et al. (2009) detail, “High-quality pain management is a part of optimal therapy
and requires knowledge and skill in pharmacologic, behavioral, social, and communication strategies
grounded in the holistic palliative care approach” (p. 1360). Their transdisciplinary review from the
fields of pharmacy, communication, behavioral science, and palliative care nursing offered key points
for understanding the intersections between disciplinary approaches and points for transdiscipli-
nary investigation, including “communication and cultural sensitivity with the patient-family unit”
(Mularski et al., 2009, p. 1360) among other approaches to “provide optimal pain management and
palliative care in the ICU environment” (p. 1366).
A third transdisciplinary exemplar is illustrated by Wigfall and colleagues’ (2020) examination of
“non-clinical HIV service providers (NCHSPs) as surrogate seekers and health information mavens
for people living with HIV (PLWH), men who have sex with men (MSM), and other vulnerable
populations” (p. 23). In the study, NCHSPs from community-based HIV/AIDS service organiza-
tions completed a survey about HPV, cancer, and health communication. The resulting data were
examined to bring an integrated perspective to the meaning of a “health information maven” and
to understand “what NCHSPs’ [sic] know and think about the health information they are sharing
with vulnerable populations” (Wigfall et al., 2020, p. 23). The team’s research examines the quality
of HPV-related cancer information and communication provided by community-based HIV/AIDS
service organizations, as well as the transdisciplinary implications for health equity and communica-
tion in the context of disease prevention, treatment, and survivorship.
It is important that health communication scholars considering multidisciplinary, interdiscipli-
nary, and transdisciplinary partnerships recognize the differences between public health and medical
fields. Perhaps most significant, the scientific origin of medicine focuses on individual-level phe-
nomena (and outcomes), whereas public health is oriented toward population-level phenomena (and
outcomes). These differences in the ecologies of the fields of medicine and public health influence
the methodological and data-gathering choices made by the researchers within them and can create
friction between researchers typically working in their own disciplinary context who seek to inte-
grate their approaches with others. For example, medical researchers will conduct studies examining
individuals situated within clinical settings (such as randomized clinical trials), whereas public health
researchers will conduct evaluation surveys or epidemiological network analyses targeting popula-
tions in community settings. These fundamental differences in method should be recognized and
acknowledged in advance to avoid potential misunderstandings and conflict.
Hannawa et al. (2015) offered an empirical investigation to identify the sources of knowledge,
objects of study, dominant thought traditions, and activities that guide health communication inquiry.
The main findings of the study demonstrated a shift over time that revealed that the field’s leading
journals were publishing more post-positivistic research and fewer interpretive and critical studies.
The authors argue that growth in collaborations and metatheoretical assessments could be utilized
to move beyond the scientific paradigm and to embrace other ways of knowing. Specifically, Han-
nawa et al. conclude, “Instead of viewing health care communication and health communication as
distinct domains, scholars need to begin translating their perspectives to each other to facilitate the
growth of their research into coherent collaborations” (p. 529).
Although expanding research inquiries and methods is possible through interdisciplinary col-
laboration in health communication, it is important to recognize the different research traditions in
public health and healthcare that have shaped the current field. Over time, a shift in medicine from
the traditional role of the patient as a passive “physician order-taker” to one of an active participant in

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 Nature of Health Communication Scholarship

a “patient-centered” care team has shifted the research methods used in healthcare communication
practice to include more qualitative, interpretive research designs examining the communication
of meaning among members of the healthcare team. Similarly, in the field of public health com-
munication, community-engaged researchers over time have responded to the persistence of health
inequalities by developing novel research strategies informed by information relevant to community
knowledge and history to better serve all publics and address those inequalities. If scholars focus on
individuals as actors and health behaviors as outcomes, the approaches they use to address health
communication problems will be different than if a scholar focuses on organizations, healthcare
systems, and communication systems as actors and social change as outcomes. Whether scholars are
interested in researching a single level of analysis (individuals) or multiple levels of analysis (individu-
als nested within a social network) influences their strategies for identifying and intervening on
levers for social change to address complex problems in health communication.

Selecting a Path: Ecological and Epistemological Considerations

Because research exploration, by definition, takes scholars to new places, how do scholars prepare to
select a path? Fundamentally, an argument can be made that comprehensive health communication
research requires an explorer’s mindset. Surveying the ecology of the field reveals an inherently mul-
tileveled, multitheoretical, and multidisciplinary set of paths circling complex health problems. One
path would suggest that studies of populations that are focused on macro-level public health commu-
nication and information problems require collection of large-scale sources of data to allow for pop-
ulation-level inferences. To fully explore all of the possible ecological dimensions of public health
problems, public health communication as a field offers “multilevel communication strategies and
interventions, such as tailored messages at the individual level, targeted messages at the group level,
social marketing at the community level, media advocacy at the policy level, and media campaigns
at the population level” (Bernhardt, 2004, p. 2051). In contrast, the field of medical communication
offers narrower pathways that more often draw on individual or micro-level processes, as medicine
focuses on the relationship between the individual body and disease. The journey through medical
communication scholarship may also uncover a maze of meso-level relationships and twisting path-
ways between hedges of individuals’ healthcare systems and within community medicine systems.
In such a journey, scholars may prepare to identify personalized, clinical, and community-based
medicine approaches to address complex problems related to communication, illness, and disease.
Interdisciplinary health communication researchers partnering with scholars in medicine are
most likely to journey to meet people in their naturalistic settings, using ethnographic and in-depth
interviews within clinical settings. Indeed, a goal in medicine as a science or practice is to build
competencies in employing “evidence-based practice” (Institute of Medicine, 2003, p. 45; see also
Chapter 14, this volume). Thus, those who are engaged in research to incorporate more patient-
reported outcomes (see Chapters 11 and 15, this volume) to account for heterogeneity may take
a more stakeholder-based ecological approach. Interdisciplinary health communication researchers
partnering with scholars in public health may be more likely to conduct survey, large-scale social
network, and big data media studies that are post-positivist or scientific. These studies may also focus
on identifying large-scale communication inequalities and health disparities to produce generalizable
knowledge. Large-scale or “big data” research is also critical to examine the social and contextual
factors underlying the influence of communication flow on health outcomes.
Public health and medicine intersect at the community level, with many interdisciplinary com-
munity medicine programs guided by faculty jointly appointed in medicine and public health.
Indeed, the emergence of public health medicine evolved to widen the scope of participation by
individuals and communities in the research process. Arguably, those who are most engaged with
community and translational partners are more likely to use approaches that engage community

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 Elisia L. Cohen

members as stakeholders to participate in the shaping of research questions and the gathering of
knowledge (see Chapter 24, this volume).

Pursuing Theory and Application: The Transcendence of Narrative

Often multidisciplinary, interdisciplinary, and transdisciplinary journeys can lead researchers to travel
beyond known theoretical and empirical research boundaries. The narrative health communication
scholarship demonstrates the way that a theoretical concept can be adapted and applied for various
multidisciplinary, interdisciplinary, and transdisciplinary explorations (see Chapter 4, this volume).
Fisher’s (1987) narrative paradigm argued that humans are fundamentally storytellers who use stories
to connect with others and to understand the world; thus, humans place values on shared experi-
ences through stories, and they evaluate stories based on their coherence (the degree to which a
story makes sense with details, characters, and events that are internally consistent) and fidelity (the
degree to which a story rings true with past stories an individual knows to be true from their eve-
ryday experience). Fisher argued that these concepts of coherence and fidelity in narratives provide
insights for why some stories are accepted and others are not.
Multidisciplinary teams of health communication researchers have examined the ways that narra-
tive can be used to improve health outcomes. For example, the field of behavior change is informed
by a range of multidisciplinary approaches to craft narratives, test messages, and measure the efforts
of change in a particular context. An exemplar of such research developed in the work of researchers
examining narrative communication science. Working independently, a social psychologist devel-
oped the theory of “transportation into narrative worlds” (Green, 2004) that she then applied to the
cancer communication context (Green, 2006). Around the same time in the field of public health
and health behavior change, other researchers were examining narrative communication and its
theoretical and empirical evidence as a tool for health behavior change (Hinyard & Kreuter, 2007).
A later interdisciplinary effort brought these scholars’ work together to focus on narrative-based
cancer prevention strategies. Public health, communication, and social psychologists jointly identi-
fied the theoretical mechanisms found in their respective disciplines that could guide research and
application across the cancer prevention and control continuum (Kreuter et al., 2007).
An alternative use of narrative theorizing can be observed by how Pangborn (2017) brings “nar-
rative inspiration” to her work to qualitatively examine interdisciplinary team communication in hos-
pice care. In her ethnographic approach to studying interdisciplinary teamwork within the hospice
setting (where nurses, chaplains, medical providers, and social workers bring disciplinary knowledge
to end-of-life care), she observed “storied occasions, called Enrichment Moments” (p. 455) that
inspired collaborations transcending hospice team care roles and routines. Her research developed an
interdisciplinary understanding with practical implications “in terms of urging assessment of meta-
narratives that guide healthcare organizing, developing a holistic view of narrative medicine that
encompasses experiences of all involved in care contexts, and embracing the capacities of narrative
logics in health organizations” (p. 455). The ethnographic study generated two interdisciplinary ques-
tions for future investigation: “How do interdisciplinary stories of care fuel cohesion among team
members representing different areas of specialization?” and “How do healthcare professionals narrate
their experiences using creative strategies to care for self while caring for others?” (p. 470). Moreover,
the research concluded by highlighting a third question that could be considered from a transdisci-
plinary perspective: “What collaborative approaches exist aimed toward the integration of the voices
of patients, patients’ families, and healthcare volunteers and how have these efforts transformed team
communication?” (Pangborn, 2017, p. 470). From a practical perspective, the question identifies
other opportunities for knowledge integration across members of a research team and stakeholders;
fully addressing this last question requires a transdisciplinary commitment to knowledge generation.

12
 Nature of Health Communication Scholarship

These examples of narrative inquiry in health communication research that are multidisciplinary,
interdisciplinary, and transdisciplinary and that push the boundaries of the field demonstrate how
the narrative paradigm (as one of many theories of human communication) may be adapted by
researchers willing to take on multiple methodological and epistemological orientations. Health
communication researchers use narrative theory to examine research questions utilizing both post-
positivist and interpretive epistemologies and answer these research questions using different ways
of gathering data. A critical perspective could push this inquiry further, asking questions related to
whose narratives or voices are heard in these healthcare interactions and what the relationship is
between narrative power and influence. What is most important to the paradigmatic orientation of
health communication research are the questions that need to be addressed, their complexity, and the
benefits that accrue from new knowledge generated by an approach that moves beyond disciplinary
boundaries. A problem that begins with a multidisciplinary team can lead to an interdisciplinary
perspective requiring collaborations. However, it also may also generate transdisciplinary questions
and learning from team members and a desire to create a novel, integrated understanding of public
health communication phenomena.

Conclusions and Directions for Future Research

Integration of theory and practice in health communication takes place within the context of multi-
disciplinary, interdisciplinary, and transdisciplinary content, epistemologies, and practices. Although
disciplines have their own ways of producing knowledge, of making meaning and discovery, they are
also meant to be pragmatic—arriving at certain ends after journeying along a long or windy road.
In the field of health communication, it is certain that scholars in the future will continue to bring
different theoretical approaches and traditions; identify different forms of evidence, interpretations,
and explanations; and be informed by the institutional, professional, and community structures that
provide settings for their work. Health communication approaches and methods will continue to
develop to inform understandings of communicating health and well-being. By utilizing multidis-
ciplinary, interdisciplinary, and transdisciplinary approaches to assemble knowledge, scholars bring
understanding to emerging ideas from various disciplines. These new understandings will expose
researchers to new pathways for research discovery and clarify how communication systems influ-
ence complex problems related to individual and population health and well-being. Embarking
on research begins a journey that is only constrained by the limits of imagination. As you read the
remaining chapters in this volume, I hope that you will find inspiration in the different disciplinary
pathways described and come along for the ride!

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 2
THEORETICAL AND
METHODOLOGICAL MATTERS
IN HEALTH COMMUNICATION
Navigating Current and Future Directions

Nancy Grant Harrington, Diane B. Francis, and Aurora Occa

When planning a trip to someplace new, people typically use a map to orient themselves. Regard-
less of whether the map is on their phone or on paper, they need to know its reference points, the
symbols used, its scale, and where they want to go. As scholars, when planning our health com-
munication research agenda, we need similar tools and knowledge. We use theories and methods to
understand the field and move forward in the right direction.
To help you move forward on your research path, in this chapter we cover the theoretical and
methodological issues that health communication scholars should understand and take into account
as they navigate research agendas. These are issues that are inherent in all research, whether or not
they are acknowledged or addressed by researchers. To the extent that you, as health communication
scholars, have a solid understanding of these issues and how they influence your work, you will be in
an excellent position to do thoughtful, well-reasoned, and practical research that not only advances
the discipline but also promotes effective practice.
We organized this chapter into two major sections. The first section covers issues of theory,
metatheory, and paradigmatic perspectives. After we define these foundational concepts, we discuss
how communication research can be conceptualized according to certain core dimensions across
interpersonal and mass communication. Then, we illustrate paradigmatic perspectives through a
review of exemplar studies in interpersonal, mass, and the newly demarcated masspersonal commu-
nication. The second section covers a series of methodological concerns. We begin with intercul-
tural health communication research, noting methodological complexities that often are ignored in
this realm. From there, we move on to matters of diversity and representation, including the concept
of intersectionality. Next, we offer observations on matters of research design that we consider cen-
tral to advancing knowledge of health communication. Finally, we confront matters associated with
reporting standards, which are meant to enhance understanding and promote cumulative knowledge
but often are neglected or ignored.

Theoretical Matters
Our goal in this section is not to provide an in-depth review of theory, metatheory, and paradigms
but rather to provide an orientation that will be helpful to you as you read subsequent chap-
ters and conduct your own original research. Although it is rare to see paradigmatic perspectives

DOI: 10.4324/9781003043379-3  17
 Nancy Grant Harrington et al.

articulated in published research, assumptions about the nature of knowledge and existence underlie
all research through theory and method. It is helpful to be aware of these assumptions and their
implications so that you can assess the extent to which published work is internally coherent and
logically defensible.
Kurt Lewin, a noted psychologist who was identified as one of the “forefathers” of the commu-
nication discipline (Schramm, 1997), is known for having said that there is nothing as practical as a
good theory. A good theory is practical because it helps to guide research. Although purely descrip-
tive atheoretical research can provide important and interesting information about communicative
phenomena, without theory to provide guidance and structure, it is difficult to know where to
begin, what questions to ask, what is important to look for, and how to make sense of any data that
are gathered. It is difficult to even know what kind of data to gather. So, to be better positioned to
add useful information to our knowledge of communication, it is wise to make use of theory, or “an
organized set of concepts and explanations about a phenomenon” (Littlejohn, 2001, p. 19).

Metatheory
Meta is a prefix that means “about,” so metatheory means theory about theory. Metatheory reflects
paradigmatic perspectives, which are ways of “looking at the world.” At the core of a paradigm lie
particular assumptions about four philosophical issues: the nature of reality (ontology), the nature
of knowledge (epistemology), the approach to obtaining knowledge (praxeology), and the value of
obtaining knowledge (axiology). These assumptions matter because they influence the way research-
ers do their work. That is, one’s paradigmatic perspective should guide the kinds of research ques-
tions being asked and the kinds of methods used to answer the questions.
Broadly speaking, there are three paradigmatic approaches to communication research: scientific,
interpretive, and critical-cultural. Each reflects a particular constellation of ontological, epistemolog-
ical, praxeological, and axiological beliefs. In a detailed and incisive analysis of the philosophical ori-
entations represented in communication research, Anderson and Baym (2004) discuss these beliefs
and how they are represented across what the authors call “gravitational clusters” (p. 601), which are
akin to paradigms: foundationalist (scientific), communicative (interpretive), and discursive (critical-
cultural). Anderson and Baym also discuss how members of the communication discipline can be
divided into two major positions, foundational or reflexive, defined by where they stand on these
beliefs. We briefly describe these positions across ontology, epistemology, praxeology, and axiology,
and then we follow that with a brief description of paradigmatic perspectives.

Ontology
Ontology addresses the nature of existence. It questions the nature of the “objects” that we study.
A foundational perspective argues that there is a “real” reality out there, with stable and observable
patterns that can be discovered through research. A reflexive perspective argues that there is no
“real” at all; instead, there is only “localized, idiosyncratic, constructed meaning” that is constituted
through communication and that is constantly shifting.

Epistemology
Epistemology addresses the nature of knowledge. It questions how we know what we know and how
we decide what is true. A foundational perspective argues that humans are capable of perceiving the
“real” and “true” nature of what exists independent of themselves. A reflexive perspective argues that
humans, through their communicative behavior, create and sustain multiple social realities that are
perceived as “truths,” which are then “enabled” or “constrained” through communication.

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 Theoretical and Methodological Matters

Praxeology
Praxeology addresses the means by which researchers do their work. It questions the theories and
methods that guide the work of researchers, the knowledge they produce, and the use to which
that knowledge is applied. A foundational perspective argues for theories with constructs that are
measurable through objective, quantifiable methods, although these researchers may use qualitative
methods in a formative sense. A reflexive perspective argues for less restrictive theories that explore
ideas through in-depth, situational, qualitative methods.

Axiology
Axiology addresses the role of values in research. It questions the motivations of researchers and what
role their underlying value structures play in the production of knowledge. A foundational perspec-
tive argues that knowledge is objective (value neutral) and describes what “is” out there, regardless
of the beliefs and values of the researcher. A reflexive perspective argues that knowledge is subjec-
tive (value laden) and describes what “ought to be,” inevitably reflecting the researcher’s beliefs and
values.

Paradigms
As mentioned, a paradigm is a constellation of beliefs regarding ontology, epistemology, praxeology,
and axiology that establishes a way of looking at the world. Using Anderson and Baym’s (2004)
term, these beliefs tend to cluster into three paradigmatic perspectives. The scientific (or objectivist
or post-positivist) paradigm embraces a foundationalist perspective. The goal within this paradigm
is to develop theories that describe, predict, and explain empirical regularities that can be general-
ized from samples to populations. The interpretive paradigm embraces a reflexive perspective. The
goal within this paradigm is to interpret and understand the meaning of situated human behavior
and how communication gives rise to shared meaning. The critical-cultural paradigm also embraces
a reflexive perspective, but it addresses the role of power and hegemony in the research enterprise,
arguing that all knowledge is political and serves to benefit the powerful at the expense of the
marginalized.

Defining Communication Research

Beyond paradigmatic perspectives and issues of metatheory, we also need to consider definitional
issues of what we mean when we say we study communication. Indeed, communication can be con-
sidered from many different perspectives as we strive to define what it is that we study. One standard
approach, reflected in the divisions of our professional organizations, considers the context or topic
of communication. For example, this handbook is focused on health communication, but other areas
of study address contexts such as environmental communication, family communication, organiza-
tional communication, political communication, risk and crisis communication, and sport commu-
nication, just to name a few. Considered from this perspective, communication research investigates
the processes and outcomes of communication that are relevant within these particular contexts.
Another way to consider communication research, though, is through what has traditionally been
identified as two distinct levels of communication: interpersonal and mass. This approach arguably
provides a better opportunity to identify and investigate foundational communication questions
that apply broadly across contextual distinctions. As summarized by O’Sullivan and Carr (2018),
the levels of interpersonal and mass communication have been distinguished by the people involved
(few or many; known to each other or not), the channel involved (face-to-face or mediated), and

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the direction of communication (one-way or two-way). Although many researchers have historically
embraced this distinction (and the distinction is reflected in the two largest divisions of our largest
professional communication association), some have called it a “false dichotomy” (see Reardon &
Rogers, 1988, p. 284). Furthermore, with the advent of computer-mediated communication and
social media, the traditional boundaries between these two levels have become decidedly blurred
(Cappella, 2017; O’Sullivan, 1999).
As a way forward, and to assist in developing more comprehensive and inclusive communication
theories, O’Sullivan and Carr (2018) introduced the concept of masspersonal communication and
developed the masspersonal communication model (MPCM). The MPCM considers how com-
munication can be distinguished according to two dimensions: perceived accessibility and message
personalization. Perceived accessibility relates to audience size and ranges along a continuum from
messages exchanged between two individuals in a private setting to messages that are accessible by
“anyone and everyone” (p. 1165). Message personalization relates to how tailored a message recipi-
ent perceives a message to be, ranging from a message completely meant for only them to a message
meant for anyone who happens to be on the receiving end. Placing these dimensions along x and y
axes results in a three-quadrant model capturing myriad forms of communication (see O’Sullivan &
Carr, 2018, p. 1167 for the model and p. 1174 for an explanation of why there currently is no fourth
quadrant). Quadrant I, the private and personal, captures traditional interpersonal communication
messaging, as well as messaging behavior such as Facebook direct messages and directed tweets on
Twitter. Quadrant II, the public and impersonal, captures traditional mass communication messag-
ing, as well as messaging behavior such as podcasts and listserv emails. Finally, Quadrant III, the pub-
lic and personal, captures masspersonal communication, with messaging behavior such as Facebook
comments/likes, Twitter mentions, and radio call-in shows.

Paradigmatic Research in Interpersonal, Mass, and Masspersonal

Communication
To demonstrate how paradigmatic approaches are reflected in research and to highlight the kind of
research questions investigated in studies of interpersonal, mass, and masspersonal communication,
we have selected nine exemplar articles published in Health Communication to reflect the categories
created by crossing paradigm and quadrant. In the following, we provide brief descriptions of the
studies and explain why we place them in their respective categories.

Interpersonal Communication
SCIENTIFIC

Afifi et al. (2019) were interested in learning how communal coping might operate under condi-
tions of chronic uncertainty. Using the theoretical model of communal coping, they posed a series
of hypotheses to explore the moderating effects of interparental conflict and trauma on communal
coping, mental health, and hopelessness, as well as how levels of personal uncertainty may interact
with these variables. They collected questionnaire data from 185 Palestinian adolescents living in
one of two refugee camps in Beirut, Lebanon. They found that communal coping was positively
related to better mental health and less hopelessness under conditions of low and moderate parental
conflict but not high parental conflict; they also found that greater personal uncertainty was harmful
to mental health in circumstances in which adolescents experienced higher levels of communal cop-
ing and trauma. This study demonstrated the importance of considering factors that might moderate
relationships among variables predicted to be straightforward. It fits the interpersonal communica-
tion quadrant of the MPCM because of its focus on parent-child/family communication, and it fits

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 Theoretical and Methodological Matters

the scientific paradigm in its use of quantitative measures and statistical analyses to test predicted
relationships among variables.

INTERPRETIVE

Hoegg et al. (2020) set out to explore families’ perceptions of communicative authenticity dur-
ing experiences with a childhood obesity intervention. The theoretical construct of authenticity,
defined as “a multidimensional phenomenon [that is] a process of negotiation of meaning” (p. 111),
provided a foundation for their study. They wanted to learn whether families would be more likely
to adhere to intervention recommendations when they perceived their interactions with healthcare
providers as authentic versus inauthentic. The researchers interviewed 21 families, attempting to
discern which aspects of the intervention (baseline hospital visit, individually tailored treatment
plan, follow-up visits with nurses) were perceived as authentic and why, as well as whether authen-
ticity influenced a family’s implementation of their treatment plan. Thematic analyses of interviews
revealed a great deal of perceived inauthenticity; however, when families did perceive aspects of
authenticity, they seemed more likely to try to adhere to the treatment plan. This study fits the inter-
personal communication quadrant of the MPCM because of its focus on family communication, and
it fits the interpretive paradigm through its in-depth, qualitative exploration of families’ perceptions
of multiple aspects of an intervention as authentic or inauthentic.

CRITICAL-CULTURAL

Ellingson and Borofka (2020) focused their work on long-term cancer survivors (LTS). Few people
are aware of the “late effects” that LTS face from their cancer treatment, but there can be both lasting
and emergent damage that is often quite serious and disabling. A tension results, therefore, between
the dominant societal view of cancer survivors as “cured” versus LTS as facing new, ongoing, and
potentially debilitating health challenges. The authors used the theory of managing meaning of
embodied experience to guide their study, and they interviewed 10 LTS using the participatory
method of photovoice to learn how LTS “describe their everyday embodiment of health and ill-
ness” (p. 182). The authors identified three interrelated themes: bodies-in-relation, bodies entan-
gled with biomedical actants, and dynamic embodiment. These themes emphasized how LTS have
“legitimate and differing communicative needs and resiliencies than cancer patients” (p. 188) and
that it is through communication (with family and healthcare providers) that “LTS understand their
embodiment and construct possibilities for their body-selves” (p. 188). This article fits the interper-
sonal communication quadrant of the MPCM because the authors acknowledge the “critical role
of communicating with others as the primary mechanism for understanding our material realities
and imagining alternative possibilities for embodied selves” (p. 182), and it fits the critical-cultural
paradigm through use of a critical feminist theory and a critical, feminist, constructionist approach.

Mass Communication

Scientific
Tian and Yoo (2020) used cultivation theory to guide their study investigating exposure to medical
drama television programs and trust in physicians. They posed eight hypotheses to explore direct and
indirect relationships between medical drama exposure, perceived realism of medical dramas, and
trust in one’s own physician, physicians in medical dramas, and physicians in the real world across
low-, medium-, and high-health literacy groups of participants. They predicted a positive relation-
ship among variables and a moderating effect of health literacy. Using data gathered from 983 adults

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 Nancy Grant Harrington et al.

who completed a Qualtrics panel survey, the researchers found support for all of their hypotheses
across all three groups, with one exception (medical drama exposure was not related to trust in
physicians in medical dramas for low-health literacy participants). This study fits the mass commu-
nication quadrant of the MPCM because of its focus on television exposure, and it fits the scientific
paradigm in its efforts to explore direct, mediated, and moderated relationships among variables.

Interpretive
Subramanian (2019) was interested in exploring how an Indian daily newspaper covered issues of
mental illness. She used media framing as a theoretical framework for the study, noting that frames
provide meaning through presenting a central idea around which stories are organized. She con-
ducted a qualitative framing analysis of 177 stories on mental illness published in India’s largest
selling English-language daily newspaper, and she used both a deductive and an inductive approach
to determine whether stories fit four themes identified in previous literature (danger/crime, treat-
ment/recovery, causal factors, systemic treatment issues), as well as to discover “aspects of stigma
and non-stigma communication unique to the Indian cultural context” (p. 1809). She found two
overarching themes: (a) “people with mental illness are a danger to themselves and others” (p. 1809)
and (b) “mental illness can be caused and treated in various ways” (p. 1810). In addition, the issue of
stigma was prevalent throughout the stories. This study fits the mass communication quadrant of the
MPCM because of its focus on printed newspapers, and it fits the interpretive paradigm in its use of
qualitative coding methods to uncover frames of meaning within stories.

Critical-Cultural
Mann (2019) set out to interrogate how online news articles covered the MMR (measles, mumps,
and rubella) vaccine-autism controversy that developed following the publication of fraudulent
research claiming a link between the two. He used work by feminist scholar Alison Kafer on crip
futurism (a vision of a future that does not marginalize or stereotype disabled bodies) as a theoretical
lens to analyze how news articles privilege able-bodied persons and report on autism in ways that
suggest it should be eliminated from society. He searched the 10 most popular online news sources
for articles related to autism and vaccination, attaining a sample of 153 articles that could be ana-
lyzed for narrative themes. Using a six-step thematic analysis, Mann found three themes: death and
survival, threat to societal well-being, and prevention of autism. He highlighted how such coverage
perpetuated stigma surrounding autism, emphasized elimination of disability, and ignored conditions
in society that failed to provide support for persons with autism, such as education and healthcare.
This article fits the mass communication quadrant of the MPCM because of its focus on online news
articles, and it fits the critical-cultural paradigm through its spotlight on how the media perpetu-
ate stigmatized views of disability while ignoring structural and political forces that marginalize the
needs of persons with autism.

Masspersonal

Scientific
Kashian and Jacobson (2020) were interested in exploring the relationship between engagement in
a Facebook support group for Stage IV breast cancer patients, factors related to engagement, and
health expectations. They used the optimal matching model of stress and social support and the
strength of weak ties theory, as well as the construct of perceived homophily, to explore engagement
and outcomes. They hypothesized positive relationships between engagement and optimal social

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 Theoretical and Methodological Matters

support, tie strength, and homophily, as well as between engagement and health expectations, and
they posed a research question asking what factor(s) best predicted engagement. Using anonymous
survey data from 74 women who belonged to a private Facebook group for Stage IV, HER2-positive
breast cancer patients, they found support for all hypotheses except the relationship between homo-
phily and engagement, and they found that optimal social support was the factor that best predicted
engagement. This study fits the masspersonal quadrant of the MPCM because of its focus on social
support messaging through Facebook, and it fits the scientific paradigm in its efforts to isolate and
assess how variables are related to one another.

Interpretive
Smith-Frigerio (2020) investigated how the theoretical construct of social capital was created or
augmented through online blogs about mental illness. She interviewed five bloggers and analyzed
six personal blogs and 878 reader comments on the blogs to answer four research questions related
to why and how bloggers decide to post about mental illness and whether blogs and bloggers who
cover mental illness consider doing so as a way to create or increase social capital at the level of the
individual, the interaction, and the institution. Smith-Frigerio found that through blogging about
mental illness, bloggers sought empowerment and catharsis; these were ways of enhancing their
social capital. She further found that blogs and subsequent reader comments developed interactional
social capital through establishing connections and a sense of community, sharing resources, and
reducing stigma. Finally, social capital was developed at the institutional level through presenting
those individuals diagnosed with mental illness as whole persons (in contrast to how they are por-
trayed in the media) and through promoting advocacy efforts (both online and offline). This study
fits the masspersonal quadrant of the MPCM because of its focus on blogs, and it fits the interpretive
paradigm in its efforts to use the lived experiences of bloggers to develop a deep and situated under-
standing of how blogging develops social capital.

Critical-Cultural
Quinlan and Johnson (2020) considered both texting and social media posts as they shared their
postpartum experiences as white ciswomen and academics. From navigating concerns over whether
infants reached certain established growth milestones to facing challenges with breastfeeding and
managing the abject exhaustion that accompanies motherhood, these researchers revealed numer-
ous parenting-related tensions and weaknesses inherent in U.S. society, which led to their hashtag:
#Motherhoodishard. They noted that although society praises motherhood, it “offers no real struc-
tural support” (p. 782) for the associated challenges, which leads to exacerbated tensions when
mothers fall short of expectations (e.g., have trouble breastfeeding, take breaks for self-care). They
also called out the United States for having “the highest postpartum maternal death rate in the
industrialized world” (p. 782), with early postpartum death rates for women of color four times that
of white women and no consideration of transsexuals. This article fits the masspersonal quadrant of
the MPCM because of its focus on social media, and it fits the critical-cultural paradigm through its
emphasis on structural features that marginalize mothers in postpartum crisis.

Moving Forward
We believe that O’Sullivan and Carr (2018) have made an important contribution to the commu-
nication discipline by developing their masspersonal communication model because it challenges
researchers to think more critically about characteristics of communication beyond audience and
channel. As communication technologies continue to evolve, this model should help researchers

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design studies to improve understanding of core principles of communication (e.g., information

exchange, creation of shared meaning) and the factors that influence them. As communication
scholarship advances, we encourage researchers to be mindful, too, of their paradigmatic perspec-
tives so that the theories and methods they use comport with their associated ontological, epistemo-
logical, axiological, and praxeological beliefs. We also encourage researchers to be mindful of four
important methodological matters that we believe warrant greater attention, which we address next.

Methodological Matters
Our goal in this section is to cover a number of issues that we believe are essential to consider when
making methodological decisions. These are issues related to the people we involve in research
studies and how we collect data from them. Being mindful of these issues will allow researchers to
design studies that contribute substantially to our discipline’s literature by embracing questions of
culture and diversity and expanding approaches to data collection. In this section, we also address the
importance of following reporting standards.

Culture in Health Communication

Cultural differences can have a dramatic influence on the interaction between individuals. From an
interpersonal communication perspective, most of the intercultural health research has focused on
the challenges and barriers observed during ethnic or race discordant doctor-patient interactions.
For example, Hagiwara and colleagues (2017) analyzed physicians’ interactions with their patients
through questionnaires, video recordings, and Linguistic Inquiry and Word Count (LIWC) software.
They discovered that implicit racial bias affects physicians’ word choice and engagement. Some
scholars have focused on developing and evaluating training programs to reduce such biases and
improve the intercultural communication between patients and providers (Delgado et al., 2013; von
Lersener et al., 2019). Others have focused on the role of cultural mediators or on the implications
of including bilingual translators (Hsieh, 2010; Pines et al., 2020). The analyses of culture-specific
narratives play an important role, as well, in several areas. For example, research has been conducted
to understand how cultural beliefs affect food consumption choices (Dorrance Hall et al., 2021) or
women’s health (Magaña, 2020).
From a mass communication perspective, scholars have focused on the impact that media have
in affecting the public perceptions of minority groups and immigrants and in creating biased per-
ceptions of the risk factors of several health issues for specific groups of individuals. In this area,
researchers have studied the stigma caused by the biased coverage of HIV non-disclosure criminal
cases (Mykhalovskiy et al., 2016) and autism (Tang & Bie, 2016), just to cite two examples. Impor-
tant also is the research conducted to understand the interplay of media and cultural trends on
individuals’ health behavior. Examples of this research include the effects of masculinity-femininity
on cancer prevention (Helme et al., 2012) or the media coverage around heart disease (Champion
et al., 2016) and body image (Melki et al., 2015). Research on media, health, and culture has also
highlighted the role social media have in providing conversation spaces (Francis, 2021) or in raising
fears and concerns toward others who are labeled as different (Sastry & Lovari, 2017). For a more
extensive review of media effects in health communication, we invite you to read Section V of this
handbook.
Discussions on the role of culture in affecting health communication also include how to cre-
ate messages to improve the effectiveness of campaigns and interventions. Messages designed using
specific cultural variables are defined as culturally sensitive messages (Dutta, 2007; Resnicow et al.,
2000) or culturally appropriate messages (Kreuter et al., 2003). Tailoring and targeting messages using
specific aspects of the cultural identity of the individuals of a community have shown positive results

24
 Theoretical and Methodological Matters

(Huang & Shen, 2016). For example, Yzer and colleagues (2018) tailored HPV vaccine promotion
messages for American Indians using several visual cues, ranging from the tone of the skin to the
traditional lacrosse game played by the community. McFarlane and Morgan (2021) developed and
assessed culturally targeted fear appeal messages to persuade Jamaican women to use a self-sampling
HPV test. Typically, the variables used to culturally tailor messages are identified through formative
research, and the messages are evaluated by using several approaches, such as focus groups (McFar-
lane & Morgan, 2021) and experiments (Yzer et al., 2018), among others.
Cross-cultural research is one of the strategies that have been used to make comparisons and
observe differences between groups of individuals to expand our understanding of human com-
munication. Hsieh (2018) examined and compared language discordance in Taiwan and the United
States, showing that language discordance in these two countries leads to different effects. Occa and
Suggs (2016) compared the effect of narrative and didactic messages in a sample of Swiss and Ital-
ian young women, obtaining different results from those typically observed in similar studies based
in the United States. Liu and colleagues (2020) examined information-seeking behaviors for white
Americans and African Americans, discovering differences in the number and types of information
sources used.
By this point in the chapter, you have probably noticed that many of the studies cited have been
conducted from all over the world, not just the United States. Conducting intercultural health com-
munication research, however, does not simply mean working with a diverse demographic sample or
with a sample of individuals not from the United States. It means identifying those cultural elements
that influence human communication and embracing them in our research and practice. It means
conducting theory-based research that identifies common patterns and behaviors while respect-
ing and valorizing local differences and solutions. Giving greater attention and space to the role of
culture in influencing health communication is essential. To keep improving our understanding of
cross-cultural differences in the future, we should promote diversity in research teams and estab-
lish worldwide collaborations. To continue the discussion on intercultural health communication
research, we invite you to read Chapter 30 of this handbook.

Sample Representativeness in Health Communication Research

Health communication research has made great strides toward theoretical plurality. Health com-
munication scholars have developed models and frameworks that examine the important roles of
human and mediated communication in clinical and public health outcomes. They also have identi-
fied critical pathways through which communication can lead to better (or worse) health (Street
et al., 2009; Wilkin, 2013; see also Chapter 15, this volume). Cancer, HIV/AIDS, and tobacco use
account for a significant burden of disease and are among the most commonly studied health issues
in our field (Beck et al., 2004; Kim et al., 2010; Nazione et al., 2013). Through work in areas such
as patient-provider communication, the effects of mass media campaigns, entertainment-education
programming, eHealth/mHealth interventions, and the role of the media, the Internet, and social
media, health communication is helping to make significant contributions to eliminating health
disparities and advancing health equity (Freimuth & Quinn, 2004). However, scholarship on diverse
health issues has not always translated to the inclusion of diverse samples within health communica-
tion research. We must, therefore, expand our focus and include samples from different cultures to
recognize and study those behavioral phenomena that we have erroneously considered universal due
to a narrow vision of the world (Henrich et al., 2010).
As health communication scholarship matures and grows, we must not overlook concerns about
sample representativeness. The concept of sample representativeness refers to a central concern of
the social scientific method—that we “make sure the sample is inclusive of the range of people to
which the scientists want their findings to generalize” (Afifi & Cornejo, 2020, p. 238). There is

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growing acknowledgment across the communication discipline regarding the unrepresentativeness

of the samples and data from which disciplinary knowledge bases have been built (Afifi & Cornejo,
2020; Davis, 2020). The representativeness of samples in health communication inquiry remains
mostly unknown because many studies do not report sample demographic information. Nazione
et al. (2013) found that only two-thirds of studies published in Health Communication and Journal of
Health Communication (from 2000 to 2009) reported sample demographics; of respondents for whom
demographics were reported, 82% of all participants lived in the United States and 61% were white.
The racial and ethnic samples from studies published in those journals were similar to their percent-
ages among the U.S. population. However, the burden of disease for many major health issues is
disproportionate among underrepresented and disadvantaged groups. For example, African Ameri-
can men have among the lowest life expectancy among any group stratified by sex and race in the
United States (Bond & Herman, 2016). Yet, they are rarely represented among published samples in
health communication research.
Sample representativeness within health communication should inevitably lead to intersectional-
ity. A term coined by the critical feminist scholar Kimberlé Crenshaw (1989) in her writings on
demarginalizing the intersection of race and sex, intersectionality has evolved into

a theoretical framework for understanding how multiple social identities such as race, gen-
der, sexual orientation, socioeconomic status, and disability intersect at the micro level of
individual experience to reflect interlocking systems of privilege and oppression (i.e., rac-
ism, sexism, heterosexism, classism) at the macro social-structural level.
(Bowleg, 2012, p. 1267)

Many health communication scholars have researched populations with intersecting social identi-
ties (e.g., Francis, 2018; Francis et al., 2021; Occa et al., 2018). For instance, Palmer et al. (2020)
investigated the health information needs of rural cancer survivors. Younger, ethnic minority, less-
educated, and financially strained rural survivors had the greatest need for informational support.
An intersectional approach could consider the health information needs of people with these inter-
secting, simultaneous identities rather than studying each group separately. Few studies in health
communication, however, have specifically employed intersectionality as a theoretical framework.
A June 18, 2020, search for the keyword intersectionality in Health Communication and Journal of Health
Communication yielded 173 and 64 studies, respectively. However, closer examination revealed that
none of the studies used intersectionality as a theoretical framework. Instead, the search included
studies writing at the intersections of various identities (e.g., race, ethnicity, gender), contexts (e.g.,
place), or models (e.g., culture-centered approach). Intersectionality is well suited to join the ranks
of other theories used in health communication research as a framework that can be adopted regard-
less of the methodological approach.
Sharf (1999) contends that the goal of health communication scholars “should be to change the
state of affairs, to be recognized for our expertise, and to make a difference, whether in educating
health professionals, preparing a health competent citizenry, or impacting health policy” (p. 195).
To achieve such goals, we need to infuse our scholarship with the three Cs—contextualization,
complexity, and consequences. Health communication scholars need to find “the most meaningful
people and situations from which to derive our data rather than the most convenient” (Sharf, 1999,
p. 199). This can be achieved by addressing issues of sample representativeness and adopting inter-
sectionality as a framework. In essence, health communication scholarship should be concerned with
internal and external validity, process, and people. Sample representativeness and intersectionality
may lead to more detailed communicative descriptions and explanations of the roles of communica-
tion across health contexts.

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 Theoretical and Methodological Matters

Methodological Diversity
We have discussed the importance of being mindful of paradigmatic perspectives, considering inter-
cultural perspectives, and including diverse populations when conducting health communication
research. In addition, it is important for researchers to be open to adopting more diverse methods to
expand our knowledge and understanding of health communication. Most of the research published
in our journals is based on traditional qualitative methods (such as interviews, textual analysis, and
focus groups) and quantitative methods (such as surveys, content analysis, and experiments), and it
is overwhelmingly cross-sectional. However, to improve representativeness and inclusiveness in our
field, as well as to advance theory, it is important to consider and apply a broad range of methods.
For more information on research design and analysis in health communication, we invite you to
read Chapter 37.

Observational Research
Observational research can advance our understanding of individuals’ health behaviors, as well as
healthcare practice, by revealing hidden patterns that would be missed by self-report (Visvanathan
et al., 2017). Observational research can also complement traditional designs such as randomized
trials (Visvanathan et al., 2017) or focus group studies (Real et al., 2018). For example, Real and col-
leagues (2018) conducted 116 hours of quantitative observations to understand nurses’ behaviors and
communication exchanges when at their stations in the hospital. These researchers integrated their
observations with interview and focus group data to develop practical recommendations on how to
design physical spaces and advance organizational communication theory in healthcare settings. As
another example, Hamel and colleagues (2020) used motion detection software and naïve observers
to study the effects of nonverbal synchrony on the interactions between physicians and Black and
white patients. Their study revealed important implications for physician-patient rapport building,
including the association of patient-physician nonverbal synchrony with affect and rapport.

Longitudinal Research
Longitudinal research can also advance our understanding of communication processes and health
outcomes. Longitudinal research involves collecting data on outcome variables at more than two
time points. Its purpose is to describe patterns of change and to establish the direction and mag-
nitude of causal relationships. For example, van der Schuur and colleagues (2019) collected three
waves of data (about three to four months apart) on 1,441 adolescents aged 11–15 years to assess
the relationship between social media use, social media stress, and sleep over time. They found that
social media stress was positively related to sleep latency and daytime sleepiness, but only for girls.
Thus, adolescent girls were more susceptible to the long-term effects of social media stress on sleep
than boys were. As another example, Noar and colleagues (2016) used systematic reviews and meta-
analyses to study the longitudinal impact of strengthening cigarette pack warnings. Their review
included 32 studies with up to 12 data points conducted in 20 countries. They concluded that
strengthening the warnings was associated with longitudinal increases in knowledge and Quitline
calls and reductions in smoking behavior.

Underutilized and Innovative Methods

Just as researchers should have a strong foundation in statistical analysis so they can analyze and inter-
pret data appropriately, so, too, should they have an understanding of multiple data collection meth-
ods to more comprehensively advance understanding of communicative phenomena. Specifically,

27
 Nancy Grant Harrington et al.

we believe that research in the next decade should expand the use of the following data collection
strategies. First, there should be more community-based participatory research to identify culture-
centered solutions (Dutta, 2007; see also Chapter 24, this volume) and to promote individuals’ rep-
resentation in our research. For example, Dutta and colleagues (2017) used a range of participatory
methods (e.g., focus groups, community workshops, town hall meetings) to investigate health nar-
ratives and health information capacity building in two African American communities in the U.S.
state of Indiana. Second, creative methods such as photovoice and having participants make draw-
ings can help to engage hard-to-reach populations or populations with special needs. For example,
Bhagat and Howard (2018) integrated children’s interviews and drawings to better understand chil-
dren’s conceptualizations of health. Third, making video recordings of dyadic interactions and then
employing stimulated recall can advance our understanding of communication processes by having
participants explain why they behaved the way they did. For instance, Waldron and Applegate (1994)
recorded participants having verbal disagreements, and then they gathered and analyzed participants’
explanations for their conversational behavior, assessing conversational plan specificity, complexity,
sophistication, and editing to explore competing theoretical explanations for individual differences
in planning and conversational competence. Fourth, gathering electrophysiological response (e.g.,
heart rate, skin conductance), eye tracking, and functional magnetic resonance imaging (fMRI) data
can add a new dimension of understanding beyond traditional self-report. For example, Donohew
et al. (2018) used fMRI to investigate differences in neurological response to high and low sensation
value messages by high and low sensation seekers. Finally, as noted by Cappella (2017), “the conflu-
ence of big data, computational methods, and social media have created insights and reformulated
questions about the nature of communication in the new millennium’s research agenda” (p. 545). He
notes that research in these areas is being pursued by scholars from many fields, including “network
science, computational social science, marketing, and computer science” (p. 546). Because health
communication research is fundamentally an interdisciplinary enterprise, often involving teams rep-
resenting not only communication scholars but also scholars from public health, nursing, pharmacy,
and medicine, to name a few, our researchers already are positioned to take advantage of a team-
based approach to advance our knowledge of health communication in these cutting-edge areas.
We strongly advocate reaching out and making connections with colleagues working in big data,
computational methods, and social media to bring their expertise to bear on problems of health and
wellness.

Reporting Standards
Even if researchers are mindful of all of the theoretical and methodological issues we have raised
in this chapter, it will not matter if they do not report their research appropriately. Just as there are
guidelines for formatting manuscripts and references, there are guidelines for reporting research.
Such standardized reporting is important for several reasons, including promoting reader under-
standing and facilitating meta-analyses and systematic reviews (see, e.g., Francis et al., 2017; Occa &
Morgan, 2018; Wang et al., 2020). We mentioned earlier how Nazione et al. (2013) found that
one-third of articles published in our top two health communication journals did not report basic
demographic information on their participants. Other problems include unclear or absent reporting
of sampling and participant recruitment procedures, variables and measures, data collection proto-
cols, and data analytic methods; a lack of clearly articulated theory and explicitly stated hypotheses
and research questions also poses problems.
A published research study is supposed to be reported in a way that allows readers to understand
what was done and why, what was found, and what findings mean in the context of the broader
literature. After reading a study, readers should have enough information to be able to replicate it.
Such transparency promotes rigor and reproducibility of results. Guidelines are readily available for

28
 Theoretical and Methodological Matters

reporting quantitative and qualitative studies (e.g., Journal Article Reporting Standards [JARS] is
included in the seventh edition of the APA manual). If we are to advance knowledge and build a
cumulative literature of health communication, authors must follow—and reviewers and editors
must enforce—established reporting standards.

Conclusion
In this chapter, we presented several issues related to the theoretical foundations and paradigmatic
perspectives of our research questions across health communication contexts. We discussed the com-
plexities of intercultural research and the diversity and representation of our research participants.
We highlighted issues related to methodological diversity and rigor in our research designs, as well
as following reporting standards in our published research.
As communication scholars, the readers of this handbook are in the unique position to advance
knowledge and understanding of the communicative behavior that shapes and gives substance to our
social world. Applying such efforts to the context of health means that the knowledge and under-
standing accrued has the potential not only to improve people’s health and well-being but also to save
lives. We look forward to seeing where your research journey will bring you.

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 3
RESEARCH TRANSLATION,
DISSEMINATION, AND
IMPLEMENTATION
Janice L. Krieger, Donghee Lee, Melissa J. Vilaro, Danyell Wilson-
Howard, Aantaki Raisa, and Yewande O. Addie

Communication has a long tradition of generating theory, rigorously testing theoretically informed
ideas, and then translating findings into information that can be used to solve practical problems. In
modern times, this process is called the science of research translation, dissemination, and implemen-
tation. In many cases, the considerable contributions of communication to these areas of science are
overlooked; thus, it is important for the field to clearly articulate the unique position of commu-
nication science relative to other disciplines in advancing this type of scholarship (Petronio, 2007).
As such, the goal of the current chapter is to weave together key concepts in both communication
science and biomedicine to showcase opportunities for mutual development and synergy. We begin
the chapter with a brief overview of the emergence of translational science and a selective review of
foundational frameworks. We then address key issues related to the use of language and communica-
tion to address translational research problems. Finally, the chapter critically examines metaphors for
understanding the translational process and introduces a new metaphor that emphasizes the inter-
connectedness of communication theory, research, and practice in advancing the science of health
and well-being.

Overview of Translational Science

The first record of communication scholars using the term “translational scholarship” was for a
preconference to the annual meeting of the National Communication Association (NCA) in 1998
(Petronio, 1999). It has remained a central theme in the discipline, resulting in multiple conference
themes, two special issues of the Journal of Applied Communication Research, and a special issue of the
Journal of Language and Social Psychology. Currently, all the major professional associations in com-
munication (NCA, International Communication Association, and Association for Education in
Journalism and Mass Communication) have divisions dedicated to health and/or applied commu-
nication scholarship. The success of the biennial Kentucky Conference on Health Communication
and the DC Health Communication Conference further reinforces the breadth of scholars focused
on these important areas. Finally, a number of professional health communication organizations are
dedicated to improving translational communication in the realm of healthcare, including the Soci-
ety for Health Communication, the Healthcare Communications Association, and the American
Public Health Association (APHA) Health Communication Working Group.
In the realm of biomedical research, the focus on translational scholarship was crystalized in
2005 when the National Institutes of Health (NIH) published the Roadmap for Medical Research

DOI: 10.4324/9781003043379-4  33
 Janice L. Krieger et al.

(Zerhouni, 2005). NIH’s roadmap was intended to increase the speed at which a scientific discovery
can have a meaningful influence on clinical care (Institute of Medicine, 2001). In 2011, the Public
Health Service Act was amended to create the National Center for Advancing Translational Sci-
ences (NCATS), which became one of NIH’s 26 institutes and centers. The NCATS mission was
to promote research translation, which is defined as “The process of turning observations in the
laboratory, clinic and community into interventions that improve the health of individuals and the
public—from diagnostics and therapeutics to medical procedures and behavioral changes” (2020,
p. 1). In other words, translational science is intended to reduce the knowledge-practice gap, which
is the chasm between what available scientific evidence suggests should be done and what is actually
done in practice (Pablo-Mendez & Shademani, 2006).
Reducing the knowledge-practice gap requires the collaboration of diverse teams of scientists,
medical practitioners, community members, and policy makers. Treise and colleagues (2016) posit
that partnerships between biomedical and communication scientists will become increasingly com-
mon. Indeed, NIH has a number of funding announcements that focus on communication science.
Another development in support of this view includes a national aim to improve health communi-
cation being included in Healthy People 2030, the fifth edition of the Health and Human Services
(HHS) Healthy People series to prioritize public health.
The multidisciplinary nature of translational science is reflected in the models and frameworks
used to describe the process. Although a full review of these models is outside the scope of this
chapter, we briefly introduce the three most common translational research frameworks and high-
light areas where communication scholars most commonly contribute. These models are the transla-
tional research continuum, the knowledge to action (K2A) framework, and the RE-AIM framework
(Milat & Li, 2017).

The Translational Science Continuum

The translational science (also known as “T”) continuum focuses on identifying knowledge-practice
gaps created when a scientific discovery moves toward application. The T continuum conceptualizes
translational science as a linear process beginning with basic research and ending with practical appli-
cation; as such, it is often summarized as the process of taking discoveries from “bench to bedside”
(Drolet & Lorenzi, 2011). There are five distinct phases of development (T0–T4). The knowledge-
practice gaps occur as a discovery encounters unique communication challenges as it moves from
one phase to another.
T0 refers to basic research, including preclinical and animal studies. For the research to progress,
basic scientists must communicate to experts in other domains how fundamental discoveries might
have biomedical applications. Another common communication challenge is when promising find-
ings are conveyed to the media too early, resulting in public overconfidence in the state of science.
For example, an experiment conducted using mice that demonstrates a potential mechanism for
understanding disease progression might be incorrectly translated by the media as representing a
potential cure for a disease.
T1 research translates basic research to humans. T1 includes Phase 1 clinical trials that test the
safety of a new treatment. This stage has similar challenges associated with interprofessional com-
munication and the media. Additional concerns include the extent to which the scientific priorities
for early-stage clinical trials reflect the healthcare priorities of the population. Fostering opportuni-
ties for interaction among scientists and stakeholder organizations, clinicians, and underrepresented
populations may ensure that scientific priorities are aligned with the priorities of healthcare provid-
ers and their patients.
T2 research translates a discovery to patients. T2 commonly takes the form of Phase 2 and Phase 3
clinical trials that test the safety and efficacy of new medical treatments. A unique challenge in the

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T2 phase is communication with healthcare providers, patients, and their families about clinical trial
participation. In some cases, such clinical trials may only be offered at major research institutions,
which introduces issues of equity and access among populations. Even when clinical trials are avail-
able to patients, recruitment is notoriously difficult. Improving dialogic communication efforts in
the area of clinical trial availability and recruitment is an area of ongoing need and required to move
forward to T3.
T3 research translates a discovery into medical practice. In T3, the primary communication con-
cerns focus on issues of dissemination and implementation of the discovery in healthcare settings.
In particular, multi-interventions are often needed to address the multifaceted nature of healthcare
decisions, including at the clinic, healthcare provider, and patient levels. An emerging issue in
this space is communicating about how to de-implement forms of care that are no longer recom-
mended. For example, women were routinely recommended to have mammograms yearly. This is
no longer the standard of care, but changes such as these must be thoughtfully communicated to
intended audiences at all levels. Successful dissemination and implementation is a necessary step for
moving to T4.
T4 translates discovery to communities. The key communication challenges include disseminat-
ing a discovery in a manner that is appropriate for policy makers, the media, and the public. Impor-
tantly, these efforts must be conducted in a manner that promotes health equity across populations
groups. In summary, the T continuum provides an overview of how the different stages of scientific
discovery can serve as opportunities for translational communication. Next, we turn to another
popular model for understanding translational science, the knowledge to action framework.

The Knowledge to Action (K2A) Framework

The knowledge to action (K2A) framework conceptualizes translational science efforts as having two
distinct but interrelated cycles: knowledge creation and action (Graham et al., 2006). The knowl-
edge creation cycle is represented as a funnel with three components: knowledge inquiry (i.e., pri-
mary research), knowledge synthesis (i.e., aggregating and interpreting results of primary research),
and knowledge tools (i.e., synthesizing information to present to stakeholders). The action cycle
is visually represented as a circle enclosing the funnel. Although this cycle is presented as iterative,
the steps progress linearly through disseminating, implementing, and evaluating culturally grounded
messages for specific stakeholders.
The K2A model has two potential applications for communication scholars. The most obvious is
that when the knowledge creation cycle is focused on biomedical research, there is a clear role for
communication science to bring expertise to guide message development, dissemination, and evalu-
ation within the action cycle. The second, less obvious application is how and when the K2A model
can be used when the knowledge creation cycle is focused on creating, synthesizing, and translating
communication science and when the action cycle is focused on disseminating and implement-
ing these findings in various contexts across objectives (e.g., behavioral change), stakeholders (e.g.,
policy makers), and settings (e.g., healthcare). The keepin’ it REAL (kiR) substance use prevention
program is an exemplar of building theory around the role of narrative engagement with campaign
messages, conducting rigorous efficacy and effectiveness studies, and implementing the program in
schools through national programs (Miller-Day et al., 2020).

The RE-AIM Framework

RE-AIM (reach, efficacy, adoption, implementation, and maintenance) posits that there are five
essential elements necessary for successful dissemination and implementation of science into
real-world settings (Gaglio et al., 2013). The first, reach, refers to the intended population for a

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health intervention, program, or policy and entails careful audience segmentation and identifica-
tion of stakeholders. The efficacy element refers to the extent to which a given intervention pro-
duces the intended outcome under ideal or real-world conditions (i.e., effectiveness). Adoption
refers to the absolute number of individuals, organizations, and settings willing to implement
the intervention. Implementation evaluates the extent to which the intended audience is exposed
to the intervention (i.e., dosage), whether the intervention is being delivered as intended (i.e.,
fidelity), and what types of adaptations are made during delivery. Finally, the maintenance ele-
ment examines whether a particular intervention becomes routine practice in an organization
and whether individuals are able to sustain behavior change six months or more after exposure
to an intervention.
Whereas the T continuum and K2A address the spectrum of translation from basic knowledge
development through the dissemination and implementation process, the RE-AIM framework
focuses specifically on translating research into practice. A key strength of this focused approach is
that it provides greater detail about the contextual factors that shape the success or failure of com-
munication efforts. Two limitations are that the model assumes that the knowledge being translated
is static (as opposed to the evolving nature of science) and it has no explicit feedback loops that allow
application to inform knowledge creation. For instance, there is no formal acknowledgement of
the role of communication for gaining attention, fostering comprehension, or motivating behavior
change through exposure to the information.
To summarize, the T continuum, the K2A, and the RE-AIM are macro-level frameworks for
understanding the knowledge translation process, and they serve as an important foundation for
transdisciplinary collaborations between communication scientists and biomedical researchers. In
order to implement translational interventions successfully, researchers must give careful consid-
eration to features of the communication environment, such as audience segmentation, message
creation, channel selection, and feedback loops. Thus, communication expertise is central to the
translational process. Next, we turn to the importance of language in translation science.

The Role of Language and Communication in Translational Science

Although few would dispute the importance of bridging the gap between knowledge and practice,
the term that best represents the actual process for doing so is a matter of debate. The process is
most commonly referred to as knowledge translation; however, there are intense critiques about
the meaning of both the terms knowledge and translation. Greenhalgh and Wieringa (2011) argue
that the term knowledge in the translational science context refers exclusively to empirical scientific
evidence and thus excludes of other ways of knowing (e.g., skill). Estabrooks and colleagues (2006)
expressed similar concern, arguing that the most powerful stakeholders (e.g., scientists) determine
what knowledge counts as valuable and thus the resources allocated to being translated. In com-
munication, this approach to knowledge translation is referred to as the information deficit model
(Krieger & Gallois, 2017). Communication efforts based on a deficit model approach commonly
rely on a knowledge translation strategy that consists of a high-status message source simplifying an
idea for a given receiver.
Engebretsen and colleagues (2017) posit that the term translation is also potentially problematic
because it assumes that production of knowledge can be separated from its transfer. In their view, the
term translation assumes that knowledge can be effectively utilized in a new context if it is simply
summarized, packaged, and presented appropriately. They contend that knowledge translation is a
complex process that requires bidirectional message exchange that contextualizes knowledge for an
intended audience within a target culture. This idea is reflective of the dialogic model, which con-
ceptualizes the translation process as knowledge co-creation (Krieger & Gallois, 2017). Co-creation
requires all stakeholders to be both sources and receivers of information. From this perspective,

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science is a cultural context complete with linguistic and cultural symbols used by a given speech
community. In many cases, different areas of science can reflect different speech communities (e.g.,
basic and biomedical researchers) as much as science reflects a speech community different from the
public. As such, the translation process requires the expertise of trained communication scholars to
serve as cultural brokers who understand the language and culture of science, as well as that of the
other stakeholders (Petronio, 2007).
An example of the challenges associated with the deficit and dialogic perspectives is the use of
plain language for communicating information to patients and the public. Plain language refers
to a communication strategy that relies on using literal language free of technical jargon and sim-
ple grammatical structure (Stableford & Mettger, 2007). For this reason, translational research that
uses plain language is often mischaracterized as “dumbing down” technical information. Although
improving the clarity of information by reducing the use of overly technical or difficult terms is
advisable, in certain circumstances other strategic communication approaches may be warranted. For
instance, significant evidence shows that metaphors facilitate information processing (Kendall-Taylor
et al., 2013). There are even some cases in which metaphors are more effective for explaining com-
plex information than plain language is (e.g., Krieger et al., 2010). Thus, communication science
offers nuanced strategies for addressing translational goals. Next, we focus on how communication
theory is informing, and being informed by, questions of knowledge translation, dissemination, and
implementation.

Communication Theory in Knowledge Translation, Dissemination, and

Implementation
As discussed in the first section, the impetus for the development of translational science was to
move basic science into practice more quickly. For this to happen, knowledge must be translated,
disseminated to the stakeholders for which it is intended, and implemented into practice. Thus, dis-
semination and implementation are important concepts in the overall goal of the knowledge transla-
tion continuum. In this section, we provide a selective review of how communication theory relates
to these important goals.

Knowledge Translation: Precision Messaging Strategies

In this chapter, we term the process of developing health interventions with evidence-based data
about the target audience as precision messaging. We borrow the term from precision medicine, a
term introduced in 2015 to improve medical outcomes for individual patients through more precise
treatment utilizing biological and psychosocial characteristics of the given patient that distinguish
them from other patients with the same clinical condition (Scherr et al., 2017). Precision messaging
parallels this process by tailoring and targeting messages to their intended audience. Tailoring cor-
responds to the hyperpersonalized treatment in precision messaging. In tailored interventions, each
audience member receives a unique combination of health messages based on individual-level data
(Davis & Resnicow, 2012). Behavioral characteristics that are often considered in precision messag-
ing include the identity affiliations of a group or an individual, religiosity, spirituality, health literacy
level, fatalism, and stages of change.
Although efficacious in many contexts, precision messaging is neither always possible nor always
necessary. Associated with implementing precision messaging interventions are logistical demands,
such as the collection of individual data, as well as the development and delivery of hundreds (or
thousands) of unique messages. Thus, the human, financial, technological, and temporal resources
required for such a level of precision are not always available (Schmid et al., 2008). Moreover, just
like precision medicine, precision messaging is not always necessary. In fact, precision messaging is

37
 Janice L. Krieger et al.

most appropriate when the intended audience is heterogeneous or when messages are tailored to
outliers in the target population (Davis & Resnicow, 2012). For groups with more homogeneous
characteristics, message targeting may be more appropriate and feasible.

Knowledge Translation: Theorizing Communication and Dissemination

Strategies
We move from the idea of message content to dissemination. Although information dissemination
as a concept is historically rooted in communication theory, health communication and dissemina-
tion and implementation (D&I) approaches often diverge. A systematic review of studies comparing
health communication and dissemination research showed that dissemination research in commu-
nication primarily focuses on message and delivery strategies (i.e., message framing, narratives, tar-
geting, tailoring). Conversely, dissemination research from a D&I perspective emphasizes outcome
evaluation (i.e., statistical evidence focusing on message reach and the ability and motivation of
audience members to change their behavior; McCormack et al., 2013). In order to understand this
idea in more detail, we review a foundational, yet ultimately limited, dissemination theory: diffusion
of innovation.

DIFFUSION OF INNOVATION THEORY

Diffusion of innovation (DOI) is one of the oldest social scientific theories and has served as a frame-
work for many public health campaigns (e.g., Centers for Disease Control and Prevention’s work-
site AIDS program, World Health Organization’s HIV/AIDS campaign). According to DOI, new
knowledge is communicated slowly over time within a social system through the stages of awareness,
persuasion, decision, implementation, and adoption (Rogers, 1995). Importantly, DOI emphasizes
the importance of audience segmentation by describing how a new idea or behavior spreads through
a community with the progression of time. Social networks play an instrumental role in expediting
the diffusion process with endorsement of champions (i.e., key administrators within an organization
and decision makers of the program adoption) and opinion leaders (Backer & Rogers, 1998). Over
time, knowledge mobilization is achieved through diffusion, which is largely a passive, one-way
process (Kerner & Hall, 2009).
Although the theory has intuitive appeal and introduces many important ideas, a few impor-
tant limitations should be considered before adopting it as an overall framework for knowledge
translation. The first is that equating diffusion to knowledge uptake reflects similarities to the
information deficit approach discussed previously (Luke, 2012). Attitude or behavioral change
may not result unless reciprocal, bidirectional communication takes place (Dearing, 2009). Fur-
ther, diffusion often occurs unevenly, most likely excluding disadvantaged communities (Balas &
Chapman, 2018). The limited effects of DOI are noted in a systematic review of DOI-guided
research studies, most of which failed to consider contextual and interaction effects that influence
the diffusion process (Fleuren et al., 2004; Greenhalgh et al., 2004). For example, barriers faced
by a notable public health campaign involved conflicting cultures between the organizer and
adopting organizations, high perceived complexity of the program, and failure to leverage exist-
ing resources (Backer & Rogers, 1998). Appreciating that innovations such as new knowledge
have symbolic meaning to various stakeholder groups and understanding how such meaning can
be used to foster dialogue are important ways that communication scholars are advancing transla-
tional communication science. As one example, we now explore how metaphors for translational
science shape thinking about communication processes and propose a new metaphor to guide
theory and practice.

38
 Research Translation and Dissemination

Theorizing the Knowledge-Practice Gap: A New Frontier

in Communication Science
Metaphorical language (metaphors hereafter) is a powerful tool for communicating new concepts;
as such, metaphors are particularly useful for addressing wicked problems like knowledge-practice
gaps. Metaphors work by generating similarities between the audience’s understanding of a familiar
idea and a new idea or concept. The two most common metaphors for translational research are the
pipeline and the loop. This section reviews the strengths and limitations of each of these metaphors
and proposes a new metaphor to advance the science of knowledge translation.
The pipeline metaphor for translational research started with the NIH Roadmap for Medical
Research (Zerhouni, 2005). It emerged from a conceptualization of academic knowledge and applied
practice as being two end points on a continuum or “pipe.” In a pipeline, substances are able to travel
long distances through the use of pumps and valves that control their flow before emptying into a
new context in which they can be put to use. Thus, the pipeline metaphor paints a picture of basic
biomedical research entering a “pipeline” process in which the flow of knowledge is controlled via
studies that examine translation to humans and practice before “emptying” into a clinical or com-
munity setting ready to be used by clinicians and patients (Green, 2014). The knowledge-practice
gaps that occur at every stage of the T continuum (T0–T4) are opportunities for contents of the pipe
to leak or have the contents be compromised before reaching the final destination.
A major criticism of the pipeline metaphor is that the linear progression suggests that the transla-
tional research process begins with basic research questions that are unrelated to pragmatic problems.
Therefore, some scholars have argued that translational research practice is better understood as a
loop (Ginexi & Hilton, 2006). The loop metaphor addresses the pipeline linearity problem by visu-
ally representing how needs in public health (e.g., need for a vaccine) or clinical care can inform the
type of basic research that scientists explore. The global COVID-19 pandemic is an ideal example of
the loop. A public health crisis sparked an immediate scientific response to understand how corona-
viruses work, mechanisms for immunity, and vaccine delivery systems, as well as dissemination and
implementation of vaccine programs. The entire translational spectrum moved from the bench to
vaccines in the community in less than a year.
As communication scholars will quickly recognize, the metaphors we use to understand the
knowledge-practice gap have shaped (perhaps even unknowingly) the communication approaches
we use to address it (Krieger, 2014; Krieger et al., 2010). When the gap is conceptualized as a
pipeline, it implies that the primary goal of knowledge translation is to fill information deficits in
clinical practice (Pablos-Mendez & Shademani, 2006). As a result, translational communication
efforts are focused on one-way communication approaches to disseminating research, such as scien-
tific conferences or didactic webinars. Although there are clear examples of situations that demand
one-way dissemination of scientific information (e.g., emergency situations, pandemics), existing
evidence indicates that dialogic communication practices have a stronger chance of successfully clos-
ing knowledge gaps (Krieger & Gallois, 2017).
When the gap is conceptualized as a loop, it implies that knowledge production is cyclical. While
the knowledge translation process continues on a linear path (e.g., T1 leads to T2 which leads to
T3 etc.), there is recognition that the “end users” of knowledge (e.g., community/T4) influence the
knowledge translation process in two important ways. First, the loop suggests that the community
has the opportunity to influence the scientific priorities (i.e., where the pipeline begins). Second, it
assumes that data from T4 studies have a direct influence on restarting the pipeline. For example, if
a medication is found to have unintended side effects among a particular segment of the population,
the loop metaphor would suggest that basic research attempt to understand why that outcome was
observed and find a remedy. Although the loop metaphor is a significant advance over the pipeline

39
 Janice L. Krieger et al.

metaphor, it can create an illusion that the scientific process is linear with steady progression. The
reality is that very few scientific discoveries make it through the translational continuum, because
either the ideas fail to deliver on their promise or the scientific community fails to communicate the
discovery well enough to keep it progressing.
In addition to being an inaccurate representation of the actual process, both the pipeline and
the loop metaphor create an expectation that all science should be translated to other stakeholders in
order to facilitate information flow. This expectation is potentially problematic in two ways. One is
that it leads to information overload in that many new ideas are competing for stakeholder attention.
In a crowded information environment, the translation of some types of knowledge will be more
valuable to stakeholders than others will. Translating all science, regardless of relevance to a given
stakeholder, may have the unintended consequence of impeding the acquisition of knowledge that
was more important to that individual.
A second problem is that translating research to certain stakeholders at the wrong time can have
negative consequences. For example, knowledge that is communicated too early may create false
hope or an unrealistic expectation of the state of science. When reality fails to live up to expecta-
tions, stakeholders can feel “duped” and begin to discount the value of science. Thus, in a crowded
information environment, it is advisable to carefully consider what knowledge is most important and
at which stage it should be translated.
To facilitate conceptualization of the translational communication process in this strategic way,
we propose a hybrid of the linear and dialogic model, which we call the deliberative model. Like the
dialogic model, the deliberative model emphasizes bidirectional communication among stakehold-
ers, emphasizing scientific knowledge and applied practice as symbiotic and equally valuable to the
development of communication science. However, as explained in more detail later, a deliberative
approach specifies the options and trade-offs in translational contexts. The deliberative model can
be visualized as the infinity symbol (see Figure 3.1). The right side of the figure represents a specific
context for research translation. The left side represents communication theory and practice. The
point in the middle is a specific instance of knowledge translation for a discreet group of stakeholders
such that information flows in a unidirectional manner but, at the crux, there is an opportunity to
change the direction of the flow and/or incorporate other ideas.
The figure builds on the advantages of the pipeline metaphor in that it incorporates a continuous
line representing the transport of information from one context into a different context or applica-
tion. However, it also draws on the strengths of the loop metaphor, such that knowledge is trans-
formed when applied in a new context, and those changes create new questions for the stakeholders
who originated the idea.
In addition to building on the strengths of the pipeline and loop metaphor, the new figure adds
two unique features to the metaphorical landscape. The first addition is the idea of intersecting
loops. In the loop metaphor, all stakeholders contribute in an orderly and linear fashion, like an
assembly line. In the new figure, each side represents the terrain of a specific knowledge domain.
The lines thicken at each end of the figure, representing the richness and depth of the theory,

Communication Translational
Theory and Strategy Research Context

Figure 3.1 Infinity as a metaphor of the bidirectional nature of translational communication science (from bot-
tom left moving up and to the right)

40
 Research Translation and Dissemination

methods, content, or practical knowledge that has developed within each domain. The lines become
thinner as they move toward the center point, indicating the increasing specialization that occurs as
knowledge evolves to be applied to a novel domain.
The second unique feature is the point of intersection. The space to the right and left of this
point represent areas of a knowledge-practice gap. The space to the right represents the expertise
and knowledge within a particular biomedical domain. The space to the left represents the expertise
and knowledge within a particular health communication domain. Both sides represent domains of
expertise, with neither being privileged. The connecting point between the sides represents discreet
communicative acts that bridge the knowledge gap. This point of connection can be conceptualized
as a railway switch. A railway switch is a term for a pair of linked tapering train tracks that help guide
a train to the correct track. The characteristics of a specific switch determine the speed at which a
train can move from one position to another.
Conceptualizing this middle point as a railroad switch may be useful because it illustrates the
uncertain linkages between knowledge creation and application. The kiR program, for example,
is grounded in basic research on the role of narrative engagement (i.e., far left loop) for campaign
message effectiveness (Miller-Day et al., 2020). The team began to examine these narratives in the
context of adolescent substance use, which began the research on a path toward the switch. At the
same time, prevention research (e.g., Donovan, 2004) was demonstrating how parental and peer
approval influenced substance use experimentation (i.e., far right loop). This research was pointing
to the importance of the social network in accelerating or decelerating onset of experimentation,
which also began moving the work along the continuum toward the switch. The point at which
the communication team began to discuss mutual collaboration with the prevention team represents
the switch.
Once the knowledge translation process reaches the switch, a decision has to be made as to
whether the state of knowledge in both domains has potential to be translated to the other. If the
idea is not viable, the switch directs the stream of knowledge to circle back to the original domain
for further refinement. If the knowledge is ready for translation, the switch takes the form of an
intentional communicative event that brings together stakeholders from each domain to create a
new set of tracks that will allow the knowledge to begin to traverse deeper and deeper into the
new domain. As this knowledge transforms through the process of application, it ultimately travels
back to the original domain to spark additional discovery. Next, we discuss how health information
technology (HIT) has facilitated application and dissemination of theory-driven communication
interventions in the contemporary digital context.

Knowledge Translation: Strategies for Effective Implementation

Although dissemination focuses on the diffusion of information, implementation often requires
developing or adapting interventions specifically to the needs of the users. Often, interventions that
are effectively implemented utilize engaged partnerships, as well as user-centered designs. This sec-
tion describes how this might be done in an HIT context and highlights the unique role of strategic
approaches for efficiently translating evidence in a manner that can be easily accessed, compre-
hended, and used by stakeholders.
Health information technology is emerging as both a novel and a necessary part of Web 2.0
for effective health communication dissemination strategies. HIT is defined as any technology that
stores, shares, and analyzes health information (Buntin et al., 2011; Kruse & Beane, 2018). It can
take many forms (e.g., electronic health records, telemedicine, patient portals, web-based social
media) and serve many end users/stakeholders (e.g., medical researchers, patients, physicians, public
health agencies). The flexibility of HIT inherently increases the extent to which it can be adapted to
enhance health communication efforts (Jen et al., 2020).

41
 Janice L. Krieger et al.

HIT is helping health communication scholars disseminate health information that can be con-
sumed for action in three innovative ways. First, HIT can enhance the ease and efficiency with which a
user can consume information for action. Web-based research registries are central databases that enable
researchers to efficiently identify eligible research study participants. This is useful in light of the data
indicating that 80% of clinical trials do not meet recruitment goals (McDonald et al., 2006). Emerging
evidence on the utility of health research registries is growing as systematic studies evaluating various
aspects of a web-based recruitment process contribute important findings (Flood-Grady et al., 2020).
Currently, web-based health research registries efficiently connect people to ongoing research stud-
ies, increase awareness of research opportunities among diverse populations, and increase clinical trial
enrollment among diverse patient populations. Merging health communication approaches like audi-
ence segmentation with accessible infrastructure as these registries do will continue to enhance the sci-
ence of recruitment and shape implications for study retention and future participation in clinical trials.
Second, HIT can increase opportunities to engage diverse audiences in strategically tailored health
messages through the effective use of cultural symbols. Motion capture technology (or moCap) is
one way to incorporate cultural symbols into message design by depicting authentic gestures and
nonverbal behaviors in visual components of health communication (Robb et al., 2015). Motion
capture is the process of digitally recording movement to accurately portray motion. Although used
in a broad array of contexts including filmmaking, sports, and game development, motion capture
is emerging as a strategy to facilitate visual communication via virtual agents in health interventions
(Vilaro et al., 2020). For example, the Centers for Disease Control and Prevention offer an interac-
tive conversation with a virtual breast cancer survivor (CDC, 2020). In another example, an inter-
disciplinary research team is testing a virtual health assistant in a clinical trial promoting colorectal
cancer screening (Griffin et al., 2019). Enabled by motion capture technology, authentic nonverbal
behaviors may play an important role in transmitting identity and meaning through movement and
improve message engagement (Portanova, 2017).
Third, linguistic characteristics of speech can transmit identity and meaning, with evolving impli-
cations for technologies that talk and users’ ability to consume information. Examples like Siri,
Alexa, or other voice-activated devices can transmit vocalic cues such as lexical stress, intonation,
and phonetic category structure that signal group membership. Researching how technologies can
accommodate a variety of voices and speech patterns (e.g., AAVE, accents, languages, etc.) may
improve user experience of web-based health information (Lewandowski & Nygaard, 2018). A wide
range of untapped work in this area is ready to be applied to health dissemination. Health commu-
nication scholars who collaborate with linguists and computer scientists are in a unique position to
shape the research agenda for HIT and communication.
A message recipient’s ability to comment on and create reciprocal dialogue within social media
platforms is one way that HIT reshapes perceptions of an original message and allows for the recrea-
tion of a message. Vaccine-related communication on Pinterest provides an example. In 2015 most
vaccine-related pins were anti-vaccine (Guidry et al., 2015), which began to draw attention as the
anti-vaccine movement gained ground and rates of previously controlled illnesses in children began
taking hold across the United States (Poland & Jacobson, 2011). By 2019, Pinterest and public health
advocates took steps against anti-vaccine Pins and users’ ability to spread misinformation around
evidence-based medical knowledge. Policies now allow vaccine-related communication only from
official health organizations (Culliford, 2019). Pinterest was one of the first social media platforms to
restrict and thus shift the narrative regarding vaccine search results.

Sharing Information
Sharing information is increasingly easy with HIT. Real-time integration of user-generated data
into electronic health records, for example, can foster information exchanges within the healthcare

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 Research Translation and Dissemination

system. The rising use of telemedicine in the wake of the COVID-19 pandemic further enhances
the extent to which various HITs can help patients share information and change experiences of
care and information exchange (Assistant Secretary for Public Affairs, 2020). Sharing information
via HIT can help locate potential and high-risk areas of disease spread, as was found during vari-
ous stages of COVID-19 spread (Qin, 2020). Enhancing diagnostic capabilities and referral systems,
directing people to trusted resources, and advancing the pace of research are additional examples
(Merchant & Lurie, 2020).
HIT also substantially broadens interactive networks that facilitate potential dissemination
partners (Bernhardt et al., 2011). Bill Nye the Science Guy, a popular science educator in the
United States since the early 1990s, adopted TikTok to disseminate one-minute evidence-based
messages about topics including how masks prevent the spread of COVID-19 during the corona-
virus pandemic (Georgiou, 2020). Nye’s messages produced high engagement (millions of views
and thousands of shares) among a target audience of mostly young users in a very short amount
of time.

Engaged Partnerships
Engaged partnerships can take on various forms depending on the types of stakeholders involved
in an implementation effort. In some cases, community-based participatory research methods
(see Chapter 24, this volume) and community advisory boards can be useful for creating and
maintaining bidirectional channels for communication among different stakeholders. Engaged
partnerships are an essential health communication strategy (and precursor to effective tailoring)
that can and should be considered when using HIT (Campbell et al., 2011). One example is
the collaborative effort of medical researchers, health communication scholars, computer scien-
tists, and patients/patient advocates working to promote colorectal cancer screening among rural
adults in the United States (Vilaro et al., 2020). Interviews and focus groups were conducted with
patients, caregivers, and researchers to clarify stakeholder perspectives. A community advisory
board met regularly to review and synthesize perspectives and identify translational gaps. Stake-
holders interacted throughout the entire process, starting with content development through to
the dissemination process (e.g., prolonged stakeholder engagement). This process of intentionally
seeking stakeholder input and applying it to health promotion efforts resulted in an acceptable,
technology-enabled method of delivering culturally relevant, guideline-concordant screening
messages.

User-Centered Design
A second strategy for increasing the potential for implementation of an intervention is user-centered
design, an approach that emerges from computer science. The key point is that interventions should
be engineered from the beginning to meet the needs of the end user. Traditionally, health com-
munication interventions have been developed using what is referred to as a waterfall approach. In
the waterfall approach, the intended audience provides input on the topic, the intervention content
is developed, and a software developer creates an application. A user-centered design approach is
far more iterative, with end users consistently providing feedback throughout the process. User-
centered design approaches not only increase the chances that the intervention will meet users’
expectations but also increase the opportunity for the empathy that leads to solutions that prioritize
privacy, relevance, utility, and cultural sensitivity (Griffin et al., 2019). Furthermore, stakeholders
who can facilitate integration of the developed health information technology into existing systems
(e.g., healthcare systems including electronic health records) and networks bookend the process by
ensuring intended audiences can be reached.

43
 Janice L. Krieger et al.

Conclusion
The goal of this chapter was to weave together a diverse, yet complementary, body of literature
that forms the basis of translational communication science. On one hand, this approach is based in
transdisciplinary perspectives on translational science. For this reason, it is increasingly important for
communication scholars to be aware of common frameworks used to guide translational research
efforts (i.e., the T continuum, K2A framework, RE-AIM) and understand the areas in which com-
munication science can be leveraged to form meaningful collaborations.
Communication science is currently being applied to address translational research needs in a
number of ways. Communication scholars are (and must continue to be) leading large NIH-funded
grants and centers focused on advancing the science and practice of research translation. They are
serving on study sections for new initiatives and serving as invaluable contributors to multidisci-
plinary projects by bringing knowledge of strategic planning and appropriate methods, such as
user-centered design, engaged partnerships, identification of relevant stakeholders, systematic con-
sideration of stakeholder needs, cultural tailoring, and dissemination and implementation efforts.
Strategic use of communication theories and approaches can increase effectiveness (e.g., speed, accu-
racy, usability) of knowledge translation and dissemination and minimize unintended consequences.
For example, HITs evolve quickly, in the sense of both what channel is acceptable to stakeholders
(e.g., Facebook, TikTok, virtual human technology) and technological capabilities. Thus, careful
planning and frequent re-evaluation of communication strategies are essential for achieving imple-
mentation and dissemination goals.
Although communication theory and research can improve research translation processes in the
health sciences, the context of translational research can also provide extensive opportunities for
growth and expansion of the communication discipline. For example, research on the successes and
failures of using metaphors as a translational tool opens up new and exciting questions about the
individual, social, and contextual factors that influence message processing. The recent coronavirus
pandemic has demonstrated the enormity of the challenges our global community experiences in
terms of access to high-quality, easily understood translations of emerging scientific discoveries.
Communication scholars are ready to meet the challenges of the important translational research
questions of our day. One example is partnering with biomedicine to develop and disseminate cul-
turally grounded HITs that help provide information and resources to patients in a timely manner.
Indeed, efforts to engage indigenous knowledge and methods of communicating will be an ongoing
challenge but a tremendous opportunity to improve the health of our global community.

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 4
NARRATIVE FEATURES, FORMS,
AND FUNCTIONS
Telling Stories to Foster Well-Being, Humanize
Healthcare, and Catalyze Change1

Lynn M. Harter, Jill Yamasaki, and Anna M. Kerr

My name is Angela Dina and my family’s world changed on May 30th, 2012. Our then
four-year-old son Charlie had a tummy ache for a few days in what I can only tell you
were God-led events that led us to the Texas Children’s Emergency room near our home.
That very day we received Charlie’s diagnosis. However, it was nothing we could prepare
for—Stage 4, high-risk neuroblastoma. The life we knew was changing forever. They
gave us the statistic when we asked that it was probably about 50/50 in his case. I just
remember thinking, okay, we have to be on the good side of this. We have to be the
hopeful side. Five children live. Why can’t he be one? The depth of despair that you can
be in that time and the questions and the doubt and all the feelings. There is nothing
like the feeling of hearing that somebody survived it. And so, if Charlie’s story and our
family’s story, if we can be the somebody that survives it to make it better for all of the
children that are battling, then I can feel good about what he has walked through to get
there. This organization [TIG] certainly would not be alive if not for Charlie and our
family’s journey. But this is not just for Charlie at this point. This is for all the Charlies, all
the children that will be diagnosed tomorrow, are battling today, and have gone before us.
(Angela Dina, Co-Founder and Executive Director of TIG,
excerpt from Realistically Ever After, Harter et al., 2017)

***

Narratives weave past and present circumstances with future possibilities (Ricoeur, 1984). Storytell-
ing echoes the narrative impulse and is a potent sensemaking resource for Charlie, and individuals
like him, facing biographical disruptions. Meanwhile, Angela relies on storytelling to challenge
health inequities and envision other options. Consider her opening testimony: Turn It Gold (hereaf-
ter referred to as TIG) is a nonprofit organization founded by a family (and friends) directly impacted
by the hardships they seek to address. Like most directors of philanthropic organizations, Angela is
a consummate storyteller. She narrates personal experiences and systemic challenges in newspaper
articles and for television anchors, at soccer games and in pep rallies, with policy makers and lay pub-
lics. In doing so, she interprets problems, articulates solutions, and suggests actions, as emphasized by
the academic periodical Health Affairs in its aptly titled feature, “Narrative Matters” (Mullan et al.,
2006). Stories inform, unsettle, and animate social interactions (Frank, 2010) and thus can serve as

DOI: 10.4324/9781003043379-5 47
 Lynn Harter, Jill Yamasaki, and Anna Kerr

empowering and/or dangerous companions. “Stories work with people, for people, and always sto-
ries work on people,” argued Frank (2010), “affecting what people are able to see as real, as possible,
and as worth doing or best avoided” (p. 3; emphasis original).
In this chapter, we explore the scope of health-related narrative theorizing and practice. To begin,
we outline basic features and forms of narrative activity. We then turn our attention to the functions
of storytelling. As health communication scholars, we are interested in what stories do for individu-
als and groups. As we demonstrate throughout this chapter, narratives provide a compelling way to
make sense of, share, and learn from lived experiences of illness and healing. In turn, storytelling can
humanize healthcare, challenge social orders, and mobilize resources for change. The story of the
Dina family and TIG is woven throughout the chapter in the form of excerpts from the nationally
syndicated documentary Realistically Ever After: A TIG Movement (Harter et al., 2017), illustrating the
power of layered accounts that move between first-person narratives and analytic writing (see Ellis
et al., 2011). The film is distributed through Public Broadcasting Service affiliates and is available on
Amazon. As with any narrative, readers/viewers should remember there are intentional silences or
gaps, experiences individuals chose not to share and/or producers chose not to foreground. As noted
by Harter (2013), “Narrators are curators of what they share about themselves even as gatekeepers
have power in selecting, representing, and interpreting others’ experiences” (p. 6). All stories are
partial and indeterminate (Harter et al., 2005) and should be considered situated, contingent, and
open-ended. As selves and situations shift, so, too, do stories. We invite readers to view the film to
enhance the reading experience.

Narrative Features and Forms

A defining feature of narrative is what Burke (1969) might label Trouble with a capital T. Life-
threatening illness disrupts our conditioned, typical ways of understanding and being in the world,
and individuals, as inherent storytellers (Fisher, 1987), draw upon and create stories to make sense of
chaos. Put simply, narratives are “stories with a teller, a listener, a time course, a plot, and a point”
(Charon, 2006, p. 3). The story of TIG, starting with Charlie’s diagnosis and continuing today as
athletic activism to raise awareness of and funding for childhood cancers, illustrates widely recog-
nized features of this rhetorical form. Charlie and his family are central characters; however, several
others co-construct, narrate, and gain prominent voice at various times and from different perspec-
tives in the ongoing account, including healthcare providers, consultants, community friends, school
administrators and students, athletic coaches and players, donors, filmmakers, and researchers. Each
narrator voices motives, fears, desires, and choices that emplot a series of events by connecting
occurrences into configurations that reveal their significance and are consequential for later action.
The story that is eventually layered and pieced together occurs through changing scenes of home,
hospitals, athletic spaces, schools, and public spheres.
Ultimately, no story is solely personal, organizational, or public (Sharf et al., 2011). Plots account
for the historical contexts in which events occur. Material and social environments are inseparable
from how roles (e.g., patient, provider, activist, athlete, nonprofit organization) are performed. The
physical spaces in which action (and its symbolic meanings) unfolds enlarge or restrict possibilities;
as situations evolve, new stories emerge. Charlie’s diagnosis, treatment, and remission gave way to
realities of late effects and woefully inadequate funding for childhood cancer research. These stories
inspired TIG’s beginnings and its activities: athletic activism in primary and secondary education,
college, and professional levels and support for other families affected by childhood cancer, medical
researchers, and community allies. Thus, in our survey of health communication scholarship, we cast
a wide net that includes the process of storytelling, autobiographical stories, organizational stories,
master narratives, and counter-narratives with recognition of the intertextual nature of meaning-
making (Sharf et al., 2011).

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 Narrative Features, Forms, and Functions

Narrative context also extends beyond the lived contexts of storied events to the dialogic con-
struction of stories themselves. A contextual understanding of meaning-making acknowledges the
relational, conditional, and indeterminate nature of narrative form as audiences bring positioned identi-
ties and cultural filters to the interpretive process (Harter, 2013). Indeed, narrative scholars endorse
dialogic ways of knowing that emphasize how individuals “came together in some shared time and
space and had diverse effects on each other” (Frank, 2005, p. 968). Health Communication’s “Defining
Moments” forum, for example, showcases the social and material power of storytelling (Harter et al.,
2020), while its companion podcast features authors in conversation with the hosts and integral
community members (Harter, 2019).
Health communication research naturally gravitates toward narrative in written form (Sharf
et al., 2011). Given that people express everyday stories of health and illness in myriad ways, narra-
tive scholars continue enlarging traditional research rationalities to include aesthetic, emotive, and
embodied experiences. These narrative forms encompass both process (e.g., dialogic moments and
storytelling occasions) and product (e.g., music, film, or art). Importantly, they also make space for
traditionally marginalized or underrepresented voices and challenge conventional representations
and prevailing assumptions (Sharf et al., 2011). Notable examples include art (Willer, 2019), ethno-
graphic fiction (Ellingson, 2005), music (Quinlan et al., 2020), poetry (Drummond, 2018; Gallardo,
2017), interactive theater and documentary film (Beach, 2021), photography (Dutta et al., 2013;
Ellingson, 2017), and even the embodied acts of dancing (Quinlan & Harter, 2010) and running
(Smith-Tran, 2021; Weller, 2018; Willer et al., 2019) for making sense of and warranting decision-
making about baby loss, disabilities, infertility, parental aging, childhood sexual abuse, cancer, and
racial and socioeconomic segregation.
Bochner (2014) offered a thoughtful history of narrative theorizing intertwined with his own
academic journey that traces various interdisciplinary traditions in a depth beyond the scope of this
review. Likewise, Whaley’s (1999) research on the purposes, roles, and methods of explaining ill-
ness remains a foundational source for communicating—and storying—health-related meanings and
uncertainties. We recommend both as resources. In the remainder of this chapter, the TIG story
unfolds alongside examples of robust narrative theorizing in health-related contexts. Specifically,
we focus on the work stories can do—fostering well-being, humanizing healthcare, and catalyzing
change—in the midst of suffering, uncertainty, care, and transformation.

Fostering Well-Being
PETER: Hello, my name is Peter.
CHARLIE: Hello, my name is Charlie Dina.
PETER: I was diagnosed with cancer when I was 5.
CHARLIE: I had cancer when I was about age 4 years old. What we have to do is get up a lot.
PETER: We had to get lots of shots. We had a lot of fluids. So, I have this thing called a port. I have
this thing called a port to get fluids to me.
CHARLIE: And, so what we have to do is we both had ports and it’s really hard.
PETER: You had a port?
CHARLIE: Yes. (laugh)
PETER: Tomorrow I am going to get my port out. But the bad news is that I bleed on my arm.
Which I don’t like.

(Peter Evans and Charlie Dina, childhood cancer survivors, excerpt from Realistically Ever
After, Harter et al., 2017)

***

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 Lynn Harter, Jill Yamasaki, and Anna Kerr

Fostering well-being has long been recognized as a fundamental function of health and illness narra-
tives (Sharf & Vanderford, 2003). People in the midst of trauma, loss, or chronic illness suffer more
than physically or mentally—relationships, identity, autonomy, sense of security, and a coherent
reality are all affected. Frank (1995) positioned these ruptures as summons for stories and suffering
individuals as wounded storytellers who make sense of their dis-ease through stories that, in the pro-
cess, can enable healing. Importantly, as revealed by the exchange between Peter and Charlie, bodily
changes set in motion the need for new stories even as stories are told through bodies (see Ellingson,
2017). For example, in her memoir, Elizabeth Silver (2017) described the value of stories in her
search for answers after her infant daughter suffered a series of seizures. “I want literature, essays and
short stories, memoir, and narrative nonfiction that comfort me as I walk a similar path,” she wrote,
“or just as easily stray from it” (p. 120).
Given the nature of chronic illness, even healing can be consequential for ill individuals and those
who support them (Ellis, 2018). Charlie’s treatments, for example, separated the Dina family, as his
parents stayed with him at the hospital and relatives cared for his sister, Caroline, at home. “Charlie’s
in remission, I’m still healing,” shared Caroline, one of two six-word stories she crafted to capture
her experience as a sibling. She went on to say, “It’s ok to not be ok.” Remission brought the ago-
nizing uncertainty of regular scans for new evidence of disease. Cancer survivorship is complex as
well. Laura Ellingson (2017), a childhood cancer survivor herself, argued that the happily-ever-after
story of survivorship fails to acknowledge the material reality of “late effects” on survivors’ health
and well-being—damage caused by chemotherapy, radiation, surgery, medications, other treatments,
and the disease itself.

For Self
Individuals are sometimes called to survive in a world that does not make sense, particularly when
uncertainty and grief accompany changes that alter life trajectories (Harter, 2013). Storytelling is
a resource for communicating through life transitions (Frank, 2010), and individuals engage in
narrative sensemaking to reckon with expectations gone awry and to imagine alternative futures
(Seeger & Sellnow, 2016). As such, most narrative research focuses on the sensemaking function of
stories (i.e., the narrative ability to create meaning out of unexpected events; Sharf & Vanderford,
2003). Research has examined, for example, how Black Americans naturally gravitate to family
storytelling, given their strong oral traditions, when making sense of incomplete family health histo-
ries, communicating health risks within families, and coping with difficult health-related challenges
(Yamasaki & Hovick, 2015). This narrative sensemaking often occurs in hindsight, when distance in
time enables storytellers to reflect upon past events and then respond communicatively, armed with
new ways to frame experiences, ascribe meanings, and justify actions (Yamasaki & Hovick, 2015).
Narrative sensemaking also helps individuals assert control when chronic or severe illness or
trauma exacerbates suffering, strips away personal autonomy, and brings emotional repercussions,
such as frustration, embarrassment, and shame (Sharf & Vanderford, 2003). Stigma reflects marked
differences or socially disqualifying attributes that denote spoiled or tainted identities (Goffman,
1963). Illustrative narrative research has explored cultural preferences and perspectives that stigma-
tize hospice use and exacerbate disparities for African American families (Dillon & Basu, 2019),
the oppression perpetuated by homophobic and transphobic narratives (Spencer, 2020), and family
storytelling that both ameliorates and reinforces the stigma of mental illness (Flood-Grady & Koenig
Kellas, 2019). Sometimes it is in the act of storytelling that individuals assert control over experiences
that once rendered them powerless (Koenig Kellas et al., 2020). Gallardo (2017) turned to poetry for
a powerful expression of self-disclosure in which she described how motherhood ultimately liber-
ated her from the shame of familial childhood sexual abuse. Yamasaki (2020), too, reflected on how
stories help her cope with compassion fatigue associated with animal rescue.

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 Narrative Features, Forms, and Functions

It takes strength and creativity to imagine new normals when trauma—pain, fear, anguish, loss,
grief—shatters a meaningful and lucid reality (Harter, 2013). Indeed, severe illness often disrupts a
person’s established self-image, necessitating that relationship, role, and activity changes be renego-
tiated or reshaped (Sharf & Vanderford, 2003). From the ambiguity and suffering that accompany
life-threatening illnesses, narrative as both process and product enables individuals to express them-
selves publicly and construct preferred identities socially. Notable narrative research in this area has
examined the communicative work of biographical accommodation, characterized as “creating and
integrating a new valued identity, reappraising relationships, and gaining a sense of meaning and bal-
ance in response to one’s disruption” (Iannarino, 2018a, p. 493, 2018b); it also has examined narra-
tive linkages between past and present for orienting to and managing current situations that threaten
an individual’s preferred or coherent biographical identity (Yamasaki & Sharf, 2011). Other research
has illustrated identity work and self-expression from the depths of illness, grief, and loss through
storytelling, art, and the embodied act of running (Scott, 2019; Willer et al., 2019).

With Others
Life-threatening or life-changing conditions shape and shift interpersonal relationships, whether by
deepening family relationships and friendships or isolating and disconnecting individuals from social
networks of reciprocity (Harter et al., 2020). Narratives of health and illness can extend the cop-
ing resources of wounded storytellers and enhance their well-being by strengthening the capacity
for resilience, creating identification among people in similar circumstances, and forging a sense of
belonging, thereby creating a sense of community in place of social isolation (Sharf & Vanderford,
2003). Exemplary narrative research has demonstrated how cancer survivors find support in online
communities (Banerjee et al., 2018) and blogs (Iannarino, 2018b). Organized walks or runs during
which narratives are shared make space for bereaved families to honor babies who have died (Willer
et al., 2019); individuals affected by cancer to nurture and create connections (Weller, 2018); and
Black women to cultivate community while challenging health statistics, shifting dominant narra-
tives, and confronting “the challenges and repercussions associated with being a racial minority in a
majority White space” (Smith-Tran, 2021, p. 1). Such “storytelling occasions” (Weller, 2018, p. 510)
validate and normalize individual feelings while also providing opportunities to reciprocate support
and envision new life possibilities.
Finally, narratives of health and illness can cultivate understandings and foster emotional con-
nections for improved well-being and increased empathy toward others. Frank (2010) argued that
stories contain an inherent morality that changes people’s sense of what is possible, permissible, and
responsible. Research in this area has focused on the power of stories regarding healthcare provider
responses to racial disparities (Burgess et al., 2019), domestic violence prevention in India (Muralid-
haran & Kim, 2019), and medical crowdfunding online (Xu & Wang, 2019).

Humanizing Healthcare
On May 9, 2020, the Journal of the American Medical Association celebrated the 40-year anniversary of
its column “A Piece of My Mind”—a column dedicated to publishing stories honoring the human
side of medicine (Malani & Zylke, 2020). “Most articles published in medical journals are research
studies full of technical methods and statistics, but devoid of emotion by design,” noted the editors.
“But physicians treat patients, not just diseases. . . . A journal limited to research would fail to convey
the entire experience” (p. 1651). To date, the column has featured more than 1,300 narrative medi-
cine essays penned by physicians, medical students, patients, and family members. These essays echo
the perspectives embodied by countless clinicians who trust in a storied approach for humanizing
patient care and managing their own distress (Defenbaugh & Dickey, 2020).

51
 Lynn Harter, Jill Yamasaki, and Anna Kerr

A narrative approach to medicine can counteract many of the seemingly inevitable consequences
of the commodification of healthcare on the therapeutic relationship between physician and patient
(Charon, 2006). The healthcare system’s demands to minimize costs while increasing efficiency can
complicate even the most compassionate physician’s efforts to establish a trusting therapeutic rela-
tionship (Roscoe, 2018), and the increased workload and decreased autonomy can lead to physician
burnout (West et al., 2018; see also Chapter 18, this volume). This model of healthcare results in
what Frank (1995) refers to as narrative surrender, or the prioritization of the biomedical narrative over
the personal illness narrative. Narrative surrender reflects the tendency for complex patient stories to
be reduced to clinically relevant facts that help determine a diagnosis. Yet, by its very nature, clinical
reasoning is an interpretive narrative practice (Hunter, 1991), and clinicians must learn to harness the
power of stories throughout the medical encounter. Doing so does not diminish diagnostic accuracy;
instead, it improves diagnosis and adherence and results in deeply personalized healthcare (Charon
et al., 2020).

Medical Storytelling
One of the most ritualized forms of storytelling in medicine is the case presentation: a clinical story
of the patient’s chief complaint, symptoms, family and medical history, and findings from the physi-
cal examination (Hunter, 1991). This case presentation is the physician’s narrative representation of
the clinical encounter (product) and a result of the physician engaging in narrative emplotment (pro-
cess) to connect the patient’s story and therapeutic events with the broader context of the patient’s
life (Mattingly, 1991). “In chart talk, the focus is on a disease. The disease is the main character,”
explained Mattingly (1991). “But in storytelling, it is the patient’s situation or experience with the
disease that is the central clinical problem” (p. 11). As such, successful case presentations require a
narrative-based approach to medical interviewing that incorporates both the biomedical perspective
and the patient’s perspective (Haidet & Paterniti, 2003) by shifting the author of the patient narrative
from the physician to the physician and patient (Hunter, 1991).
Just like other essential clinical skills, a narrative approach to clinical care requires specific abilities
that can be taught and evaluated. Dr. Rita Charon (2001), a pioneer and renowned authority in the
field of narrative medicine, called for physicians to “acknowledge, absorb, interpret, and act on the
stories and plights of others” (p. 1897) through narrative processes of reflection and self-examination.
In doing so, reflective practitioners “can identify and interpret their own emotional responses to
patients, can make sense of their own life journeys, and so can grant what is called for—and called
forth—in facing sick and dying patients” (p. 1899). When physicians listen to patient stories, they
rely on their scientific knowledge to look for elements of the story that confirm or negate universal
truths about disease. When physicians listen for patient stories, they draw from narrative skills of
characters, emplotment, setting, and point of view to understand and empathize with each patient’s
singular experience (Charon, 2006; Charon et al., 2016).
Notable examples of narrative medicine in practice include parallel charts (Charon, 2006), one-
page summaries (Anderson & Hanna, 2020), and editable calendars (Anderson & Kaye, 2009), all of
which incorporate the patient’s plan of treatment in coordination with the patient’s subjective expe-
riences and physician’s reflective responses. When clinicians invite patients and families to author
their own clinical stories, they recognize that patients are complex individuals living in multiple
complex realities and that narratives can empower them to create personal illness stories that “tran-
scend objective events” such as blood counts and CT scans (Bianco, 2011, p. 301). Research has also
examined virtual appointments (Anderson & Hanna, 2020), mobile health clinics (Carmack et al.,
2017), and hospice settings (Tullis et al., 2017) as narrative spaces for reimagining and humanizing
care in salient ways.

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 Narrative Features, Forms, and Functions

Storytelling Connections
Given the importance of narrative medicine, several medical schools have designed narrative courses
or electives for practicing compassionate care. At Ohio University’s Heritage College of Osteopathic
Medicine, for example, the Open Book Project teaches medical students narrative skills by exam-
ining fiction writings, paintings, photographs, poetry, and lyrics that depict issues related to social
justice and inclusion (Casapulla et al., 2020). In small-group formats, students can learn the skills
of close reading and reflective writing as they engage in both telling and listening to stories that
represent the experience of medical students. Other programs use readers’ theater or dramatic arts
to teach end-of-life communication and palliative care (Kerr et al., 2020), case studies to negotiate
bioethics at end of life (Roscoe & Schenk, 2017), and physician autoethnographies at professional
conferences (Foster, 2014).
Students respond positively to narrative medicine interventions, appreciating the time for self-
reflection that is often overlooked in medical education (Barber & Moreno-Leguizamon, 2017).
Indeed, students often crave the connection that is fostered through the collective sharing and
witnessing of stories. Consider medical students Aiesha Polakampalli and Samantha Nandyal, who
founded Behind the White Coat: A Night of Storytelling for their peers (Polakampalli & Nandyal, 2019).
During the first event, eight classmates shared tales of loss, growth, family, love, and laughter; two
shared poetry about their hometowns; and another spoke about the importance of cherishing life
after losing a grandparent.

Catalyzing Change
We had the opportunity at the Coalition Against Childhood Cancer meeting a couple
of years ago, that’s known as CAC2, to meet a doctor and childhood cancer survivor Dr.
Greg Aune. What was compelling about his talk was that surviving his own childhood
cancer in his late teens thrust him into a situation where he pretty immediately was hav-
ing severe late effects.

I will just never forget the feeling I had of sharp sadness. Of the reality of what that could
mean for my own son who’s had those same cardio-toxic drugs, but also that really helped
form a focus in our organization in terms of where we wanted to give research dollars.
We really want to begin this investment in this long-term survivor late effect world by
which we might have a greater increase in survivorship, but it still is at the hands of the
toxic and archaic chemo drugs that we’ve been giving these children from the last 20 or
30 years.
(Angela Dina, Co-Founder of TIG, excerpt from Realistically
Ever After, Harter et al., 2017)

***

The communication discipline has witnessed growth in the study of how storytelling can be lev-
eraged by individuals and organizations to shake up habitual patterns of risk-taking and improve
public health. Notable research has explored the process by which storytelling fosters individual
attitudinal and behavioral change (e.g., Miller-Day & Hecht, 2013), shifts family patterns (Koenig
Kellas, 2018), and inspires health advocacy (e.g., Ivancic, 2021) in contexts that include reproductive
justice (Hernandez & Upton, 2020), legislative arenas (Beck et al., 2015), and global public health
initiatives (e.g., Barbour et al., 2016). A case in point: Most publics remain unaware that cancer is
the leading cause of death by disease for children, yet only 4% of the National Cancer Institute’s
budget is dedicated to childhood cancer research (see https://cac2.org). Far from the “happily ever

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after” often associated with no evidence of disease (NED) for cancer patients, 80% of survivors live
with long-term late effects of treatment (Ellingson, 2017). The Dina family’s story functions as the
origin narrative for TIG even as it works to shift the dominant narrative of survivorship and invest
in therapies developed for children. Their narrative, like many others, demonstrates how stories
function to (a) engage publics and transport them into narrative realities and (b) disrupt conventional
understandings and norms and mobilize resources for imagined alternatives.

Engaging and Transporting

Somebody’s going to relate first to the human component and, then, second, be validated
by the statistics and the numbers. The stats of a number, you’re not going to connect to
initially. You’re not going to write a check. You’re not going to want to share it with a
friend. But, the stats are going to make you take action once you are connected to that
story or that emotional connection. Storytelling is all about people and it’s not about a
color necessarily. And that’s why you have so much support because your wife has done
so much storytelling.
(Alyssa Weldon, Founder and President of Well+Done Marketing,
excerpt from Realistically Ever After, Harter et al., 2017)

***

For decades, practitioners have used narratives in health promotion messaging, including Well+Done
in its partnership with TIG. Survivors’ stories, juxtaposed with statistical information and a gold rib-
bon in public service announcements, circulate heavily in September, National Childhood Cancer
Awareness Month. To what extent are narratives effective in raising awareness and reducing barriers
to messaging and individuals’ resistance to change (e.g., counterarguing, discounting claims, ignor-
ing messages)? Scholars have explored these questions in entertainment-education efforts (Moyer-
Guse et al., 2011), health campaigns (Niederdeppe et al., 2014), and social marketing (e.g., Kreuter
et al., 2007). Braddock and Dillard’s (2016) meta-analysis of narrative research suggests that exposure
to narratives is persuasive and produces story-consistent changes in beliefs, attitudes, intentions, and
behaviors. Their review also indicates that medium of communication does not appear to moderate
the relationship between narrative exposure and outcomes and that data generally are ambiguous
with regard to the importance of fictionality.
What is the path of influence from narrative exposure to persuasive outcomes? Theorizing has
considered mechanisms such as transportation (e.g., Barbour et al., 2016), message design features
(Dillard et al., 2010), and mental model building (Miller-Day & Hecht, 2013) to reduce risky sexual
behaviors (Moyer-Guse et al., 2011), foster intention to quit smoking (Kim et al., 2012), prevent
adolescent substance abuse (Shin et al., 2019), support obesity policies (Niederdeppe et al., 2014),
and increase empathy for stigmatized groups (Oliver et al., 2012). Across projects, research indicates
that narratives transport audiences into story worlds and engage audiences by creating connections
to characters through emotional personal testimonies and parasocial interactions in dramatizations.

Disrupting and Mobilizing

The other thing I know was important for us was the turn from just a feel-good messaging
to a little bit more bold messaging. It is a turn, it’s a shift in the landscape of how we are
communicating this. It is a turn from just putting information out to putting it out boldly.

Athletic activism is so important in what we are doing to make this a nationwide move-
ment. Athletes have an incredible amount of power in how they can relay messages. You

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know, we love to watch athletes. Their bravery, their commitment, their strength. And
we think that very much talks to a cancer patient.

And, what we do with athletic activism, we really raise funds through action. And raising
means lifting others up and the funds are just affecting that bottom line.
(Michelle Payne, Co-Founder and Marketing Director of TIG,
excerpt from Realistically Ever After, Harter et al., 2017)

***

Storytelling that disrupts widely ascribed accounts of reality is a critical element of health advocacy
and activism. Private-turned-public narratives elevate the experiences of people like Charlie and can
mobilize publics toward action and change. Notable research has explored how biographical narra-
tives politicize risks in environmental health campaigns (Zoller, 2012), build diverse communities
and infuse dialogues (LeGreco & Douglas, 2017), and inform public health policy making (Bute,
2021). The circulation of personal stories in public realms has proliferated as social media platforms
have evolved (Beck et al., 2015). For example, Beck and colleagues (2015) charted the role of celeb-
rity narratives in raising awareness and money through personal disclosures or as allies. Similarly, TIG
partners with athletic teams that leverage their visibility to disrupt the status quo in cancer research
and treatment and mobilize fans to take action in their own spheres of influence (Yamasaki et al.,
2019). Meanwhile, its bold efforts are instructive in how to avoid the “tyranny of cheerfulness”
that too often pervades social marketing efforts (King, 2006, p. 122). As part of its campaign titled
“#IDareYou to #DiscoverTheTruth and #TurnItGold,” TIG circulates infographics with uncom-
fortable and inconvenient facts.
Master narratives animate individuals and groups by constructing beliefs and legitimizing actions
(Frank, 2010). Narrative scholars ask questions like the following (see Harter, 2013): What value
sets are maintained or contested in storytelling? Whose interests are served (or not)? Whose voices
are minimized or missing altogether? Notable inquiry has critiqued the limits of entrepreneurial
and neoliberal narratives that position diseases as marketable products (Dubriwny, 2013), privatize
care resources (Ivancic, 2017), individualize responsibility for health (Shugart, 2016), and mini-
mize systemic inequities (Dutta, 2015; Dutta et al., 2017). Scholars also have engaged the interface
between public and private narratives of women’s health and reproductive care, including breast
cancer (Keranen, 2010), conception and infertility (Johnson & Quinlan, 2019), and sex education
(Jensen, 2010), and in doing so revealed the ideological and contested nature of meaning-making
about health and bodies. For example, research has explored how narratives of “good motherhood”
inform how women experience postpartum depression (Dubriwny, 2013), milk banks (Quinlan &
Johnson, 2020), and Caesarean sections (Cripe, 2018). Collectively, this work reveals how some
identities and choices are privileged and others are stigmatized even as the voices of some individuals
are denied expression: mothers who do not identify as female; queer mothers, fathers, and parents;
adoptive parents; and a host of others.
Importantly, master narratives are not static and, in fact, shape-shift as counter-narratives unsettle
stagnant scripts and challenge normative practices (Frank, 2010). Nelson (2001) defined counter-
narratives as clusters of histories, anecdotes, and other fragments woven together to disrupt stories of
domination. In turn, communication scholars have explored how counter-narratives work to shift
health organizing (Harter et al., 2017) and challenge power relations (Ellingson, 2017). For example,
childbirth has become medicalized in the United States, yet scholars have positioned social births
as ways to resist master narratives that pathologize birthing and limit the agency of women (Wolf,
2021). In contexts of food hardship, scholars have charted the rise of deficit-driven narratives of
dependency that stigmatize those who are hungry and perpetuate white privilege (de Souza, 2019),

55
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even as they fail to address unjust global food systems (Schraedley et al., 2020). Even so, research
points to organizing that disrupts false binaries between the “givers” and “recipients” of food (Ivan-
cic, 2021), highlights “positively deviant” practices that elevate nonnormative organizing for seeking
food justice (Okamoto, 2020), and even reimagines food pantries as spaces for the circulation of
counter-narratives informed by voices of those on the margins (de Souza, 2019).
Finally, for some scholars, narrative is at once a phenomenon of interest and form of intervention.
The film featured in this chapter is one of many campus-community projects led by Harter through
the Barbara Geralds Institute for Storytelling and Social Impact (Harter et al., 2020). Ellingson (2017),
one of the cancer survivors featured in the film, uses photovoice to elevate the voices of other survi-
vors in the American Cancer Society’s Relay for Life. The Center for Culture-Centered Approach to
Research and Evaluation (CARE) directed by Dutta (2020) also uses photovoice, coupled with other
narrative forms including blogs and documentary films, to create openings for community voices at
the “margins of the margins” (https://www.massey.ac.nz/~wwcare/). Storytelling disrupts norms and
mobilizes efforts in part due to its capacity to engross audiences in action sequence and settings, and—
because of its character-driven nature—characters resolve dilemmas, evidence motives, and shift their
senses of self over time. For example, Miller- Day and Hecht’s (2013) narrative engagement theory
privileges students’ stories in its framework for the “keepin’ it REAL” adolescent drug curriculum, a
program employed across the United States and beyond. Beach (2021) translated an analysis of family
conversations across the natural progression of a member’s cancer into theatrical productions. Beach
is director of the Center for Communication, Health, and the Public Good, and his scholarship also
relies on other narrative forms including films. In similar fashion, Narrative Nebraska, a research lab
founded and directed by Koenig Kellas (2020), explores connections between individuals’ and families’
storytelling and well-being and fosters translational storytelling interventions about elder care, parent-
ing, and more. In sum, narratives render complex information more understandable; as such, they are
well suited for use with nonacademic audiences.

Continuing the Conversation

Narratives serve important purposes in health-related contexts from fostering well-being to human-
izing healthcare and catalyzing change. The field of communication has a rich history of narrative
theorizing, and, as revealed in this chapter, health communication scholars have contributed mean-
ingfully to the narrative turn in health contexts. In and through storytelling, individuals confront
their own and others’ misfortunes and refashion priorities, organize and enact care, and unsettle
stagnant scripts. In its finest moments, storytelling disrupts the narrowing gaze of the biomedical
model and fosters individual well-being amidst vulnerability. Meanwhile, storytelling can connect
individuals, open up conversations that might otherwise remain dormant, and set the stage for col-
lective action.
We remain convinced that storytelling is a necessary survival strategy as individuals face the inevi-
tability of disease and death. It is an ode to humanity that individuals can imagine new normals and
thrive in uncertain circumstances (Harter, 2013). Even so, there are moments when individuals and
groups ought to challenge collective normalizations of suffering. We should be outraged, for exam-
ple, that hunger continues to persist amidst abundant food systems and disproportionally impacts
minorities (de Souza, 2019). We challenge narrative scholars to adopt an anti-racist agenda that
seeks to foster just and equitable health policies, care, and outcomes. Intersectional and fluid identity
constructs—gender and sexual identities, race/ethnicity, class, age, ability—influence what stories
are told and how they are used to organize resources. Narrative theory ought to decenter storytell-
ing practices that privilege whiteness, heteronormativity, and ableism and instead foster inclusive and
accessible care.

56
 Narrative Features, Forms, and Functions

Positive deviant frameworks (Singhal, 2014), culture-centered approaches (Dutta, 2020), Chicana
feminists (Hernandez & Upton, 2020), and engaged scholars (Beach, 2021) offer hopeful visions
for how narrative scholars can work alongside community members to elevate subjugated voices.
Meanwhile, new materialist and feminist approaches illustrate how narrative scholars can explore
generative tensions between the symbolic and material world as experienced in and through bodies
that interact with other bodies, technologies, and environments (Ellingson & Sotirin, 2020). For
example, it is difficult to practice narrative medicine without shifts in material circumstances (e.g.,
reorganization of clinical spaces, time constraints, legal liabilities). Narrative theory can be enriched
by foregrounding interplays between bodies and sociocultural and material processes that shape how
health and healing are understood and experienced. Moves in these directions can set the stage for
learning from diverse individuals, working toward systemic change, and enriching individuals’ lives.

Note
1. The first two authors of this chapter were members of the production team for the documentary and were
involved in the fieldwork composing this film. The third author has spent extensive time with families deal-
ing with childhood cancer and is deeply familiar with the storylines included in the film.

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 SECTION II

Interpersonal and Family Health

Communication
 5
MENTAL HEALTH, MENTAL
ILLNESS, AND SUICIDE
Rosalie S. Aldrich and Jessie M. Quintero Johnson

The study of mental health is complex. In a conversation among health communication scholars,
one of the scholars observed, “There are many influences on mental health and its treatments,
including biological and physiological components, psychological, and intrapersonal processes, rela-
tional issues, provider-patient interaction, social network/social capital influences, characteristics
of healthcare organizations, cultural influences, and media” (Fisher et al., 2012, p. 542). Commu-
nication scholars are well positioned to investigate how these forces work together to produce and
reproduce the meaning of mental health, which is, fundamentally, a communicatively constituted
phenomenon (Mokros, 1993).
The endeavor to study mental health requires transdisciplinarity, which is an “intellectual integra-
tion” of philosophies, theories, and methods from the natural, social, and health sciences (Parrott &
Kreuter, 2011, p. 11). The study of mental health necessitates engagement with diverse theoretical
and methodological perspectives and also demands attention to an array of communicative phe-
nomena. In the following review, we survey research related to the prevalence of mental illness and
suicide, healthcare disparities, mental health diagnosis and treatment, and mental illness and suicide
in different contexts.

Prevalence and Risk Factors

Approximately 46 million adults in the United States live with a mental illness (MI; NIMH, 2019),
and 11.2 million live with a serious mental illness, defined as a mental, behavioral, or emotional
disorder that substantially interferes with life activities and causes serious functional impairment
(NIMH, 2019). There is a strong link between suicide and MI, although many suicides also occur
impulsively in moments of crisis for people with no history of mental illness. Approximately 800,000
people die by suicide every year around the world. In the United States, where suicide is the tenth
leading cause of death, 47,173 people died by suicide in 2019 (WHO, 2019). Even more people
seriously think about suicide (10.7 million), attempt suicide (3.3 million), and make a plan to die
by suicide (1.4 million) every year (CDC, 2020a). In 2017, the number of people who died from
suicide was twice as high as those who died from homicide (CDC, 2020b). Because firearm suicide
accounts for the majority of suicide deaths, some researchers and healthcare policy advisors suggest
that suicide prevention measures should require restrictions on access to firearms (Andres & Hemp-
stead, 2011).

DOI: 10.4324/9781003043379-7 63
 Aldrich and Quintero Johnson

Certain groups of people are especially vulnerable to MI. For example, prevalence of MI in young
adults is significantly higher than it is for older adults. In fact, nearly 50% of adolescents will experi-
ence some kind of MI, with 22.2% of them having a serious impairment (NIMH, 2019). Women
experience higher rates of MI than men, and people from underserved and marginalized communi-
ties may be more vulnerable to more severe and persistent MI (Kreps, 2020; NIMH, 2019). Evi-
dence suggests that the prevalence of mental disorder is similar across racial and ethnic groups in the
United States, despite notable exceptions, including the higher prevalence of post-traumatic stress
disorder and alcohol dependence in Native American communities and schizophrenia in Black com-
munities (McGuire & Miranda, 2008). Epidemiological studies about prevalence rates raise questions
about the degree to which disparities in diagnosis of mental disorder in racial and ethnic minority
communities exist (Atdjian & Vega, 2005). Nonetheless, researchers agree that the burden of MI
disproportionately affects Latinx and Black people, who are more likely to experience persistent and
chronic MI than white people are (Breslau et al., 2005; McGuire & Miranda, 2008).
Higher suicide rates also occur in vulnerable populations such as refugees and migrants, Indig-
enous persons, and members of the LGBTQIA communities (WHO, 2019), adolescents who are
being/have been bullied (van Geel et al., 2014), those experiencing/experienced childhood abuse
(Schonfelder et al., 2019), women victimized by intimate partner violence (Cavanaugh et al., 2011),
men and women who have served in the armed forces (US Department of Veterans Affairs, 2019),
and physicians (Dutheil et al., 2019). In general, white people have a higher rate of suicide, with
16.8 per 100,000, than have Black people, with a rate of 7.0 per 100,000, and other minorities, with
7.5 per 100,000. The rate of suicide is highest in middle-aged white men. Indeed, men were three
times more likely to die by suicide than women even though women were more likely to attempt
suicide (AFSP, 2020).

Mental Healthcare Disparities

Despite the high prevalence of MI and suicidality, rates of mental health professional care are
astoundingly low: Only about half of people with MI receive treatment (NIMH, 2019). Dispari-
ties in access to and the quality of mental healthcare in the United States are well documented
and exacerbate both the vulnerability to and the effects of mental disorders (Kreps, 2020; Link &
Phelan, 1995). These disparities in mental healthcare access and quality are best understood from a
social ecological perspective, which suggests that individual, social, and environmental factors work
together to produce conditions that negatively affect the mental healthcare experiences of people
from traditionally marginalized groups (Cook et al., 2017). Individual-level factors include predis-
posing characteristics, like negative perceptions about and mistrust of mental healthcare systems and
health providers, and enabling characteristics, which include access to health insurance, language
proficiency, and mental health literacy (Atdjian & Vega, 2005; Cook et al., 2017). Social conditions
include the systemic biases in mental health assessment, intervention tools, and mental healthcare
practices resulting in discrimination that disproportionately affect poor, Asian, Black, Latinx, and
Indigenous people (McGuire & Miranda, 2008; Snowden, 2003). Environmental factors include the
effects of living conditions that make it difficult to offer easily accessible mental healthcare at the
local and state levels (Cook et al., 2017). Health communication scholars can play an important role
in the effort to better understand the complex conditions that produce mental health disparities and
the multifaceted solutions that will ultimately improve them.

Mental Health Diagnosis and Treatment

Mental health diagnosis requires both inquiry about and disclosure of psychosocial functioning—
information that, for many, is private. Research about privacy management in communicative

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contexts suggests that it is important to consider how individuals make strategic decisions about
how and when to disclose private mental health information to healthcare providers (Petronio &
Child, 2020). Although considerable attention has been given to communicative processes and the
management of private information in other health contexts, there is a need for more scholarly
communication attention to the context of mental health diagnosis (Milton & Mullan, 2014). It is
important to consider how the communicative nature of MI and the consequences of stigma are
related to certain diagnostic labels, as these present unique challenges to both the diagnostic process
in mental healthcare and its study.
The communicative processes inherent in the act of diagnosing MI are far more complex than
simply applying diagnostic criteria. The Diagnostic and Statistical Manual of Mental Disorders (DSM-5),
which classifies mental disorders and details their associated criteria, is the primary tool used by
health professionals to diagnose MI. According to the DSM-5, a mental disorder “is a syndrome
characterized by clinically significant disturbance in an individual’s cognition, emotional regulation,
or behavior that reflects a dysfunction in the psychological, biological, or developmental processes
underling mental functioning” (APA, 2013, p. 20).
Diagnostic tools like the DSM-5 presume that there are (nearly) universal characteristics associ-
ated with mental disorders, despite the fact that the meanings of mental health and illness are socially
constructed (Hinshaw, 2007; Mokros, 1993). Despite the ubiquity of their use in the diagnosis of
mental illness in the United States, such diagnostic instruments do not always sufficiently account
for the influence of social and environmental conditions (e.g., poverty, discrimination) and cultural
norms on mental health experiences (Manderscheid et al., 2010). Thus, intercultural communica-
tion competence and mental health literacy must be at the forefront of mental health diagnosis
(Furnham & Swami, 2018; Ulrey & Amason, 2001).
Attention to the nature and effects of MI stigma—a phenomenon that is produced and repro-
duced through various communicative processes—is integral to the study of mental health, illness,
and treatment (Kreps, 2020). Goffman’s (1963) seminal work on identity management was the first
to include an explication of stigma, which was defined as a “deeply discrediting” attribute (p. 3; see
also Chapter 6, this volume). Goffman’s interest in the various tactics that people employ to manage
“spoiled” identities, including attempts to hide or downplay a stigmatizing condition, illuminated
both the social machinations and costs associated with stigma.
Stigma surrounding MI often impedes mental healthcare; fear about and avoidance of the nega-
tive effects of the diagnostic labels given to people who experience symptoms of MI prevent peo-
ple from seeking and receiving diagnosis and treatment (Ben-Zeev et al., 2010; Corrigan, 2007).
Some research suggests that people who experience symptoms of mental illness are less likely to be
informed about their diagnosis because health professionals are hesitant to label patients with stig-
matizing conditions. This is particularly true when the diagnosis is more severe (e.g., schizophrenia;
Outram et al., 2014). Although the use of diagnostic labels runs the risk of stigmatizing people
who experience mental illness, such labels can serve the purpose of giving meaning to and normal-
izing the experience of mental illness. Researchers have suggested that communication protocols
should be implemented to guide and facilitate supportive patient-provider discussions about mental
health diagnosis (Milton & Mullan, 2014). More scholarly attention is needed to both explain the
important factors underlying effective communication about mental health diagnosis and guide the
practice of diagnosis.
Communication is also central to mental health treatment. Indeed, communication is one of the
primary treatment tools in mental healthcare. Research suggests that the quality of communication
between patients and mental health providers (e.g., collaborative communication, listening, empa-
thy), the use of participatory decision-making styles, and the intentional tailoring of communicative
practices to suit patient preferences (e.g., using less formal language) predict patient participation
in and adherence to treatment recommendations (Aggarwal et al., 2016; Thompson & McCabe,

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2012). Scientists have called for a more rigorous examination of mental health treatments, which
should include an investigation of the role of communication styles and skills used by both mental
healthcare providers and their patients in talk therapy and interactions beyond the treatment setting
(Holmes et al., 2014). Health communication scholars have much to contribute to this domain of
mental health research.
Communication is also central to suicide prevention and intervention efforts, which range from
creating public awareness through campaigns to offering gatekeeper training programs. There are
also mental health programs such as counseling for individuals who are experiencing suicide idea-
tion. Additional efforts come in the form of family and peer social support available both in person
and online (McClay et al., 2020). Research guided by the theory of planned behavior (Ajzen, 1987)
suggests intervention by close others is a viable avenue for suicide prevention (Aldrich, 2015).

Interpersonal Communication

Social Relationships
Low quality and/or quantity of social relationships is linked to poor health outcomes, including MI
(Umberson & Montez, 2010) and mortality (Holt-Lunstad et al., 2010). In a meta-analysis exam-
ining the influence of social relationships on mortality risk, Holt-Lunstad et al. (2010) analyzed
148 studies (n = 308,849), controlling for age, sex, initial health status, cause of death, and follow-
up period, and they found that individuals had a 50% increased likelihood of survival when they
had stronger social relationships. These results may be supported by the stress-buffering hypothesis
(Cohen & Pressman, 2004), which suggests that social relationships provide resources like informa-
tion, emotional support, and/or tangible support, which help individuals adapt to life stressors such
as illness. Therefore, these different types of support buffer the harmful effects of stressors.
Lack of meaningful social connections among individuals may lead to feelings of isolation, aliena-
tion, and loneliness. The interpersonal theory of suicide posits that the absence of reciprocal rela-
tional connections (i.e., thwarted belongingness) and a feeling of being a liability in interpersonal
relationships (i.e., perceived burdensomeness) are linked to suicide ideation (Joiner, 2005). Social
isolation is known to contribute to many negative health outcomes, including cardiovascular effects,
cognitive decline, and depression (Bhatti & Haq, 2017).

Family
Family dynamics and interactions also affect physical and mental health (Amato, 2000). Parents
play a particularly important role in influencing their children’s psychological well-being (King
et al., 2018). Higher levels of parental support are linked to lower levels of depression and a lower
likelihood of attempting suicide (Lecloux et al., 2016). This impact does not end in childhood but
continues into adolescence (Flynn et al., 2014). The parent-adolescent attachment relationship may
serve as a protective factor against mental health problems; however, negative events in the family,
such as divorce, may serve as a risk factor for developing mental health problems (Bannink et al.,
2013).
The mental health of other family members can also significantly affect the psychosocial well-
being of individuals. For example, there is a link between parents who have been diagnosed with MI
and the psychological distress experienced by their children (Riebschleger, 2004; Siegenthaler et al.,
2012). Although some of the distress may be related to the effect of a parent’s mental health status
on daily functioning, family communication patterns, and an increase in relational discord, evidence
also suggests that the stigmatization of MI affects parenting, self-esteem, and experiences of social
avoidance and/or exclusion/discrimination for members of the entire family unit (Hinshaw, 2005).

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This points to the need for a more nuanced examination of the family relationship characteristics,
like communication patterns, that can influence mental health.

Healthcare Professionals
A psychological toll is related to caring for people experiencing MI. Mental health professionals are
vulnerable to burnout, which is characterized by overwhelming exhaustion, a sense of detachment,
feelings of cynicism, and a sense of ineffectiveness and/or lack of accomplishment in one’s work
role (Newell & MacNeil, 2010; see also Chapter 18, this volume). It seems that job-related stressors,
including concerns about one’s personal safety and being new to the mental healthcare profession,
may be particularly predictive of burnout (Devilly et al., 2009). Exposure to the traumatic injuries
of one’s patients and/or clients can lead to secondary traumatic stress, which manifests in post-
traumatic stress symptoms (Newell & MacNeil, 2010). Caring for people demonstrating symptoms
of MI requires both the heightened management of one’s personal feelings and the administration
of compassion and empathy; thus, mental healthcare workers are also at risk of compassion fatigue,
which is the result of “bearing the suffering of others” (Figley, 2002, p. 1434).
Unfortunately, a considerable “lack of training, fear, complexities of decision-making, practical
barriers, lack of usage of assessment tools, and violations of psychometric principles by assessment
tools” complicates the study of MI and suicide (Kene et al., 2018, p. 1). Communication scholars are
uniquely positioned to engage in transdisciplinary research, which is necessary to address theoreti-
cal and empirical gaps in the study of MI and suicide, in both assessment and prevention. The need
to create and validate culturally sensitive mental health and suicide risk assessments is particularly
important to aid mental healthcare professionals in performing risk assessments and making complex
decisions during medical interactions.

Media, Stigma, and Suicide

Communication research has played an instrumental role in documenting the nature and effects of
stigmatizing messages about MI in news, entertainment, and social media. Framing analysis offers
tools to researchers to explore how media information is structured and presented in ways that shape
and prime mental representations (i.e., cognitive schema) about both MI and people who experi-
ence MI, making those representations more accessible in memory (Scheufele & Tewksbury, 2007).
Media effects research is grounded in theoretical frameworks concerned with how media content
shapes public stigma by influencing audience beliefs, attitudes, and behaviors related to MI.

News Media
News information about MI and suicide is often rife with stigmatizing content and features meta-
phors, exemplars, catchphrases, depictions, and visual images that frame people with MI as deviant,
dangerous, dirty, and responsible for their illness conditions (Niederkrotenthaler et al., 2014; Sieff,
2003). News stories tend to sensationalize MI and emphasize themes of dangerousness and the need
for “protection” from people with MI (e.g., Aragonès et al., 2014). Often, news stories link people
who experience MI to criminality and both interpersonal and self-directed violence, despite the fact
that people who experience MI tend to be the victims, rather than the perpetrators, of violence
(e.g., Murphy et al., 2013; Whitley & Berry, 2013).
A systematic analysis revealed that news media do contribute to MI stigma (Ross et al., 2019).
Exposure to negative news stories emphasizing the dangerousness of people who experience MI con-
tributed to negative attitudes and stereotypes (Reavley et al., 2016). Gwarjanski and Parrott (2018)
illustrated the normative effect of news information about MI: News readers offered commentaries

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with more defaming statements when they read news stories with stigmatizing content. Reading
news stories that contained information about the problems with the mental healthcare system was
associated with negative attitudes about MI (Corrigan et al., 2013).
Investigations of newspaper content have also revealed that the quality of news information about
MI is often inaccurate, negative in tone, and incomplete, particularly with respect to information
about mental health treatment (Gwarjanski & Parrott, 2018; Sieff, 2003). News coverage of serious
MI (e.g., schizophrenia) tends to feature more stigmatizing content, whereas stories about other ill-
nesses, like anxiety and depression, offer more nuanced and detailed health information (Goulden
et al., 2011).
News coverage of suicide, both in volume and content, has been linked to increased rates of
suicides, which is known as suicide contagion (Romer et al., 2006; Sisask & Varnik, 2012). Phillips
and Carstensen (1986) demonstrated a link between higher than expected suicide rates in the week
following a highly publicized suicide story. When individuals have backgrounds similar to the sui-
cide victim reported in the media, it can lead to identification with the victim and result in copycat
suicides (Lee, 2019).
Targeted interventions aimed at journalistic practices related to the production of news stories,
like educating journalists about MI and suicide, can have a positive influence on news coverage
about MI (Maiorano et al., 2017; Nairn et al., 2001). The World Health Organization (WHO, 2000)
produced recommendations on how to appropriately report on suicides that explicitly discouraged
describing the suicide method, using graphic headlines or images, and sensationalizing the death
(Pirkis & Blood, 2001). The guidelines also suggest encouraging vulnerable people to seek help
(Bohanna & Wang, 2012). Limited research has investigated whether media outlets comply with the
recommendations, although results suggest they are frequently violated (Chiang et al., 2016).
Deliberate decisions to include different kinds of information can also help to reduce the effect of
news content on MI stigma. News information about mental health recovery and the treatability of
MI can have a positive effect on readers’ perceptions about MI (McGinty et al., 2015). For example,
when news stories feature stigma-challenging content, reader comments are more likely to feature
stigma-challenging statements and more disclosures about personal experiences. This potentially
mitigates the social avoidance often associated with experiences of MI (Gwarjanski & Parrott, 2018).
The structure of news stories can also reduce stigmatizing responses; using a narrative format to
tell the stories of people with stigmatizing conditions is likely to evoke empathic responses (Oliver
et al., 2012). In addition to exploring anti-stigma interventions targeted to news producers, there is
also a need to facilitate critical news readership. Audiences may be more likely to believe that other
people’s perceptions about MI are more negatively affected by news content than their own (Hoffner
et al., 2017). To effectively combat MI stigma, it is likely that both audience-centered approaches,
like enhanced media literacy, and message-centered approaches, including the presentation of stere-
otype-disconfirming content, are necessary (Ramasubramanian, 2007).

Entertainment Media
Like news media, entertainment media are full of negative, inaccurate, and stereotypic portrayals that
distort the nature of MI, the people who experience it, and mental healthcare providers (Diefen-
bach & West, 2007; Stuart, 2006). Across a variety of genres targeted to both children and adults,
portrayals of MI are replete with dangerous, violent, and socially undesirable characters (Lawson &
Fouts, 2004; Pirkis et al., 2006). Entertainment media tend to dramatize the experience of MI, in
part by depicting characters with the most severe MIs (e.g., schizophrenia) and symptoms (e.g., hal-
lucinations; Quintero Johnson & Riles, 2016). Characters with MI tend to commit more crimes
than other characters do (Parrott & Parrott, 2015). Portrayals of MI in entertainment programming
are often gendered: Female characters with MI are cast as psychologically vulnerable, and thus more

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sympathetic, whereas male characters tend to be portrayed as more dangerous and severely mentally
ill (Quintero Johnson & Miller, 2016). Indeed, psychopathy is often used as a rhetorical device to
frame mentally ill male story characters as morally depraved, deviant, and responsible for societal
violence (Merskin, 2012). When they are not depicted as dangerous criminals, some characters who
experience MI are portrayed as free-thinking, rebellious spirits who chafe against social norms—
portrayals that have the potential to minimize the psychological and social costs associated with MI
(Pirkis et al., 2006). These depictions are consistent with the idea that media often trivialize MI by
oversimplifying, mocking, or even framing illness as a positive benefit (Myrick & Pavelko, 2017).
Researchers have also documented the frequency of stereotypic portrayals of mental health pro-
viders (MHPs) in entertainment media, which often characterize MHPs as unrealistically helpful or
harmful (Pirkis et al., 2006). An analysis of psychotherapy in films revealed that negative stereotypes
of MHPs were less common, even though depictions of unethical and manipulative behaviors were
relatively frequent (Wahl et al., 2018).
A variety of theoretical frameworks have been used to study the nature and effects of entertain-
ment media messages about MI, but two theories have received particular emphasis in the literature:
cultivation theory, which predicts that repeated exposure to messages featuring recurring themes
distorting the nature of reality leads to erroneous beliefs and attitudes that are consistent with those
beliefs (Gerbner et al., 2002), and social cognitive theory, which predicts that audiences vicari-
ously learn by watching media models and subsequently perform learned behaviors depending on
certain psychological and social conditions (Bandura, 2002). Exposure to stigmatizing portrayals of
people with MI is associated with negative and stereotypic beliefs about people who experience MI
(Diefenbach & West, 2007). Stigmatizing portrayals of MI in entertainment media are also related
to attitudinal and behavioral effects, including intolerance of and discomfort around people with
MI (Granello & Pauley, 2000; Quintero Johnson & Riles, 2016). Some attention has also been paid
to negative effects of stigmatizing content in entertainment media on mental health help-seeking
behaviors and willingness to engage in mental health therapy. Exposure to negative portrayals of both
characters with MI and their MHPs has also been associated with higher levels of self-stigma related
to help-seeking (Maier et al., 2014).
Despite the significant role that entertainment media have played in perpetuating MI stigma,
there is evidence that entertaining messages can also help to improve MI stigma. The entertainment-
education strategy (EE; see Chapter 19, this volume), which involves the intentional integration of
persuasive educational information into entertainment programming, may be especially effective for
increasing audience knowledge about MI, improving attitudes toward people diagnosed with MI,
and even reducing the desire to engage in social distancing behaviors from people experiencing MI
(Caputo & Rouner, 2011).
One way to reduce stigmatizing responses to depictions of MI is to create engaging and relatable
characters with MI. When individuals develop a parasocial relationship with a character known to
be diagnosed with MI, they associate fewer MI-specific stereotypes, report a lower desire for social
distance from people with MI, and report an increased willingness to seek mental health treatment
(Hoffner & Cohen, 2015).
Exposure to celebrity disclosures about living with an MI is associated with a reduction in stereo-
types about MI, an increase in information seeking about MIs, and performing more help-seeking
behaviors (Calhoun & Gold, 2020; Francis, 2018). However, suicides by celebrities are concerning
because reports on celebrity suicide are associated with increases in suicide (Ramchand et al., 2019).
Following the suicide death of Robin Williams, researchers examined the role of parasocial relation-
ships and media exposure and found that stigmatizing media exposure was related to greater depres-
sion stereotypes, such as the belief that people with depression should “snap out of it” (Hoffner &
Cohen, 2018, p. 1576). Another study examined the emotional responses to the Robin Williams’s
death. The results suggested that it may be most beneficial to insert health messages within existing

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material about the celebrity, potentially driving social media traffic toward the general health infor-
mation outlets (Carpentier & Parrot, 2016).

Social Media
Approximately 72% of American adults have adopted at least one social media platform (Pew
Research, 2019). Research on this topic often focuses on the effect of social media on mental health,
how people use social media to disclose and share health information, how they interact with and
receive support from others, and how they engage in surveillance of health information (Moorhead
et al., 2013). Questions about the influence of social media on mental health have tended to focus
on the potential effect of social media use to promote mental distress through the mechanisms of dis-
placement (i.e., replacing time spent in “real life” face-to-face interactions) and upward social com-
parison to unrealistic and/or idealized images and accounts (Pantic, 2014). There is evidence that
Internet use is positively associated with suicide rates (especially for men) and that social media plat-
forms, like Instagram, are used to communicate about suicide and self-harm (Carlyle et al., 2018).
Social media do have the potential to enhance mental well-being by fostering the development
and maintenance of relationships and social support (Pantic, 2014). The relationship between social
media use and mental well-being remains unclear; some studies indicate that social media use is
linked with poor mental health outcomes (e.g., depression, anxiety), whereas others point to the
positive mental health effects of social media use (e.g., self-esteem, social support; Best et al., 2014;
Weinstein, 2018). Some of the disagreements observed in the existing literature are likely attribut-
able to the differences in researchers’ focus on and treatment of important user characteristics (e.g.,
age, mental health vulnerabilities), social media use (e.g., time spent on and the use of different
platforms), and the nature of engagement with social media platforms (e.g., passive versus active use).
Just as there is great potential to use social media data for the purpose of public mental health
surveillance and forecasting, there is also great promise in using social media to aid in public mental
health education and stigma reduction efforts. Beyond enhancing the audience reach of traditional
health campaign efforts, social media platforms offer users a way to share their own and access other
people’s mental health stories; this kind of amplification has the potential to reduce MI stigma by
normalizing personal experiences with MI in addition to fostering social connections and peer sup-
port between people who are affected by MI (Betton et al., 2015; Naslund et al., 2016). Health
communication scholarship is uniquely positioned to lead research efforts aimed at understanding
the influence of social media on mental health.

Future Research
Although communication research has contributed to our understanding of mental health, illness,
and suicide, there is still much work to do in this area. Communication scholars should continue to
both explore the effect of culture and individual characteristics on the diagnosis of MI and play a role
in understanding the complex conditions and solutions surrounding mental health disparities. The
need to identify effective strategies to decrease the stigma surrounding MI and suicide in media, the
healthcare system, and interpersonal relationships persists.
It is vital to better understand the complex conditions that contribute to mental health disparities
and work to eliminate them. One area in particular that requires further examination is the men-
tal health and suicide risk of vulnerable racial, ethnic, and other marginalized social groups, as the
demographics in the United States continue to shift (Radford, 2019). Researchers need to further
explore the effects of different social relationships on mental health, such as depression and anxiety.
Research suggests that social connections and relationships may be particularly important for miti-
gating the effects of traumatic events on depression and anxiety (Allen et al., 2012). This is especially

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true as the world continues to experience traumatic environmental events and global health pan-
demics. For example, healthcare professionals at the front lines during the COVID-19 pandemic
have been and continue to be confronted with unparalleled levels of stress (Tsamakis et al., 2020).
The ongoing stress faced by essential healthcare workers will certainly impact their mental health
and relationships. This is an issue health communication researchers should continue to investigate,
especially in determining the long-term mental health effects.
The theoretical and methodological lenses through which researchers have approached the study
of mental health affect understanding of and approaches to ameliorating the social and individual
factors that influence mental illness and suicide. When mental health is studied from a post-positivist
paradigm, researchers rely on scientific observation to verify the presence or absence of mental illness.
For example, standardized questionnaires and assessment tools are used to assess psychological symp-
toms, with predetermined cutoff scores categorizing people as having mild, moderate, or severe forms
of a particular mental illness. Although a post-positivist approach allows for empirical measurement,
control of extraneous variables, exploration of cause and effect relationships, and generalizability of
results, some nurse scholars argue that this approach to mental health experiences is dehumanizing
and fails to fully capture the nuance of mental health experiences (Weaver & Olson, 2006).
An alternative approach to studying mental health is the critical research paradigm, which aims to
question and challenge the forces that produce and reify power structures in order to change society.
Central to this paradigm is an examination of the many social, political, and cultural factors that
influence illness experiences and cause and exacerbate mental health problems (Doucet, 2010). The
critical approach to the study of mental health may be criticized, however, for its lack of objectivity
and unscientific approach to complex biopsychosocial phenomena.
A third prominent approach to the study of mental health is the interpretive research paradigm,
which is defined by its acknowledgement of the socially constructed nature of mental health and
illness. This perspective allows mental health researchers and practitioners to explore the lived expe-
riences of people who are experiencing mental health challenges, which provides rich data that can
be used to inform the provision of mental healthcare. Although the interpretative research paradigm
allows scholars to use research methods that “offer great potential in contributing to the scientific
foundation of mental health services research” (Palinkas, 2014, p. 851), this paradigm does not focus
on the empirical testing of theories or the generalization of research findings. Ultimately, under-
standing and addressing the complex factors that shape mental health, illness, and suicide depends on
the application of each of these three research paradigms, which offer unique theoretical perspec-
tives, research questions, and methods.

Conclusion
The study of mental health, mental illness, and suicide is wide-ranging and complex. Communica-
tion scholars can and should continue to investigate the variables that produce and reproduce the
meanings of these multifaceted topics. As is evidenced in this review, many opportunities exist for
communication researchers to explore the topics of MI and suicide in a variety of social, relational,
and informational contexts. Just as communication plays a central role in shaping how MI and sui-
cide are perceived, communication scholarship can and should be integral to the advancement of our
understanding and treatment of these phenomena.

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 6
STIGMA, COMMUNICATION,
AND HEALTH
Xun Zhu and Rachel A. Smith

Since the new millennium, the world has witnessed several major pandemics, such as SARS, H1N1,
Ebola, Zika, and, more recently, COVID-19. A striking similarity among these pandemics is the
emergence of stigmas that devastate the affected communities, stoke divisions and impede unity,
and disrupt public health efforts. Dr. Tedros Adhanom Ghebreyesus, director-general of the World
Health Organization (WHO), argued, “Stigma . . . is more dangerous than the virus itself . . . A
stigma is the most dangerous enemy” (WHO, 2020, p. 12).
Communication and stigma are connected in many ways and across multiple levels of social life.
Communication is critical to creating, enacting, coping with, and eliminating health-related stigmas
(Smith, 2007; Smith et al., 2011); it intersects with stigma at interpersonal, group, institutional,
community, and public levels (Pescosolido & Martin, 2015). The landscape of stigma involves people
who have dynamic associations with and reactions to stigmatized groups (Smith, 2012a; Thomp-
son & Seibold, 1978). This chapter reviews the research on the fundamental processes by which
stigma, communication, and health are inextricably and consequentially intertwined. Using Craig’s
(1999) typology, we review the work from sociopsychological, critical, and rhetorical traditions of
communication theory. We prioritized theoretical developments in the literature, especially ideas
that synthesized traditions and knowledge from different areas of communication studies. We also
noted the questions that remain open for future research. We begin with a brief review of stigma’s
effects on health and well-being and define the conceptual terms used in this chapter. Afterward,
we review four intersections of communication, health, and stigma—creating, enacting, coping, and
eliminating. Last, we discuss directions for future research and conclude with some final thoughts.

Stigma’s Effects on Health and Well-Being

Stigma has profound consequences for health and well-being. For individuals, stigma is a stressor
and an obstacle with short-term and long-term effects. Like other stressors, stigma compromises
psychological and physical well-being: It is associated with lower self-esteem (Schmitt et al., 2014),
greater anxiety and distress (Herek et al., 2013), and pain (Chen et al., 2008). Stigma also puts people
at risk for violence (Herek, 2009). Stigma is pernicious. The experiences of social pain link to the
same neurological processes that occur with physical pain (Eisenberger et al., 2003). One difference
is that when people recollect their physical pain, it is difficult for them to re-experience that pain;
as people recollect their social pain, however, they can re-experience it with similar or even greater
intensity (Chen et al., 2008).

DOI: 10.4324/9781003043379-8  77
 Xun Zhu and Rachel A. Smith

Stigma is also an obstacle, not just to resources that allow people to flourish but also to basic,
fundamental health services and human rights. Indeed, as Goffman (1963) stated, “we believe the
person with a stigma is not quite human. On this assumption, we exercise varieties of discrimina-
tion, through which we effectively, if often unthinkingly, reduce his [sic] life chances” (p. 5). When
experienced early in life, stigmas can disrupt developmental trajectories (Masten et al., 2012). In the
long term, prolonged exposure to stress, poorer social networks, and fewer critical resources con-
tribute to human weathering, where people age prematurely and experience higher rates of disease
morbidity and mortality (Geronimus et al., 2010). Stigma’s effects can even appear post-mortem,
such as nonconsensual de-transitioning of transgender people after death (Whitestone et al., 2020),
burial outside of consecrated ground (Magilton et al., 2008), and rejection of people with some
health conditions from funeral homes altogether (Wojcik, 2000).
Link and colleagues (2017) described stigma as a “fundamental cause of health inequality” (p. 53).
Stigma impairs social and support networks and constrains access to healthcare, job opportunities,
housing choices, and educational achievement (Major et al., 2018). Stigma persistently contributes
to health inequality, even when the mechanisms (e.g., risk factors) by which a health condition
affects communities are blocked or eliminated. Ultimately, stigma’s effects intertwine with social
power (Parker & Aggleton, 2003) and become institutionalized (Hatzenbuehler & Link, 2014). For
example, Hatzenbuehler et al. (2009) found that the association between sexual orientation status
and psychiatric disorders was significantly weaker in the states with policies that protect (vs. states
that do not protect) sexual minorities. As Blacksher (2018) argues, stigma violates distributive justice
(equitably sharing health and social determinants) and recognitional justice (being treated as a peer
in public life).
There is an important controversy with stigma: Some scholars and policy makers have argued
to stigmatize health conditions, on purpose, to promote behavior change or increase compliance
with recommended behaviors; examples include smoking cessation (Bayer, 2008) and weight loss
(Callahan, 2013). The (faulty) logic is the assumption that stigmatizing a health condition will
incentivize people to make changes to avoid stigma’s pain and suffering. Even without consider-
ing the ethics of such a strategy, existing evidence does not support that logic. Stigma messages
induce psychological reactance, which limits compliance with message recommendations (Erceg-
Hurn & Steed, 2011). Stigma limits access to the resources needed to support behavior change
and creates its own barriers. For example, research on infectious diseases shows that stigma
inhibits access to and support in public health efforts (Reluga et al., 2019; Smith & Hughes,
2014). Campaign-induced stigma also suppresses autonomous motivations, which are critical
for long-term behavioral change (Choi & Noh, 2019). Stigma limits interpersonal support and
leads to harassment. For example, research shows that weight stigma increases teasing during
physical activity, and teasing about weight leads to lower involvement in exercise and a stronger
preference for sedentary and solitary activities (Hayden-Wade et al., 2005). Further, stigmatiza-
tion does not go away with recovery from a disease, identification of mistaken membership (e.g.,
false-positive results for a stigmatized infection), or successful behavior change. For example,
people who survived COVID-19 infections face stigma even after they have recovered (John &
Hennessy-Fiske, 2020). Former smokers still experience stigma-related discrimination, such as
the loss of job opportunities (Stuber et al., 2008). In short, the evidence does not support stigma
as a compliance-gaining strategy or policy: It is unethical and ineffective (see also Chapter 34,
this volume).
To summarize, ample evidence shows that stigma triggers a vicious cycle of harm that threatens
health and well-being through multiple paths. Stigma’s effects manifest at personal, interpersonal,
institutional, and social levels. We identified four fundamental intersections among communication,
stigma, and health: (a) creating, (b) enacting, (c) coping, and (d) eliminating health-related stigmas.
Before discussing each intersection, we pause to reflect on vocabulary.

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A Word About Vocabulary

Defining stigma is not trivial or straightforward. Stigma research has been criticized for conducting
studies without clear conceptual definitions and boundaries (e.g., Link & Phelan, 2001). In Manzo’s
(2004) words, stigma is “underdefined and overused” (p. 401).
One challenge is that stigma can be viewed as a personal, interpersonal, or social phenomenon.
From a communication perspective, stigma can be seen as a type of message, a message effect (i.e.,
reactions to stigma messages), or social norms that affect message production. To be precise through-
out this chapter, we have designated unique terms to refer to specific concepts. The term stigma
refers to the fixed, simplified description of the profound disgrace of a particular social group and
its members that has diffused within a larger community (Smith, 2007; Smith et al., 2016). Stigmas,
then, are collective norms (Rimal & Lapinski, 2015) or social facts (Durkheim, 1982) that operate at
the societal level and have the power to influence people’s beliefs and actions. If people enact stigma-
tization when the stigma does not exist, they may be punished by the community for dehumanizing
others (Thompson & Seibold, 1978). In contrast, if a stigma exists but people do not enact it, they
may be punished as traitors (Phelan et al., 2008; Thompson & Seibold, 1978).
The term stigmatization refers to a type of message: verbal or nonverbal communication used to
perform devaluation and discrimination (e.g., name-calling, ostracism; Smith et al., 2016). Stigma-
tization, then, overlaps with other kinds of hurtful messages, including character assassination (Icks
et al., 2019) and hate speech (Haas, 2012; Waltman & Mattheis, 2017). Internalized stigma is one type
of consequence of experiencing stigmatization or being aware of a stigmatizing status: It involves
incorporating the (social) stigma (e.g., stereotypes and devaluation) into one’s sense of self or identity
(Livingston & Boyd, 2010). In contrast, institutional stigma is a different consequence: It is “the rules,
policies, and procedures of private and public entities in positions of power that restrict the rights
and opportunities of [stigmatized] people” (Livingston & Boyd, 2010, p. 2151). The term stigmata
refers to a distinguishing mark used to identify members of a stigmatized group. With our terminol-
ogy in place, we turn to the four intersections among stigma, communication, and health, beginning
with communication’s role in creating stigmas.

Creating Stigmas
The first intersection between communication, health, and stigma is creating stigmas. Stigma theo-
ries have long assumed (Goffman, 1963; Pescosolido et al., 2008) that stigmas are socialized through
interpersonal communication and various media sources (e.g., news reports; Pescosolido et al.,
2008). The model of stigma communication (MSC; Smith, 2007, 2011; Smith et al., 2019) was
developed to explicate why some expressions of private prejudice, but not others, diffuse within
a community and become collective norms (Rimal & Lapinski, 2015) or social facts (Durkheim,
1982). The MSC posits that stigma messages (i.e., stigma appeals) create stigmas by socializing people
on how to identify and devalue a social group and by mobilizing the community to collective action
and social diffusion.
According to the MSC, a stigma message includes four intrinsic features: marks, labels, etiology,
and perils. Marks are nonverbal content used to identify members of a stigmatized group (Smith,
2007). Marks can be a symbol affixed to the stigmatized group (e.g., tattoo) or an attribute that is
presumed to reflect a health condition (e.g., open sores) or stereotypes about the group. Marks that
are visible and disgusting evoke the strongest reactions because such marks can be recognized and
remembered more easily. Marks that evoke disgust also are associated with the behavioral tendencies
to isolate, or distance from, the stigmatized group (Smith, 2007).
Labels are terms created and used by stigmatizers to refer to the stigmatized group (Smith, 2007).
For example, people who have schizophrenia may be labeled as “schizophrenics.” The difference,

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albeit syntactically subtle, is consequential. Labeling deprives agency and dignity; it gives unfounded
legitimacy to treating the stigmatized group as if it were a distinct and homogenous entity charac-
terized solely by dehumanizing stereotypes. It essentializes the stigma. Indeed, the WHO (2015)
published guidance to discourage labeling a novel disease with reference to specific groups, as an
attempt to correct the centuries-old health practice of naming a pandemic after its perceived origin
and stigmatizing those groups (Hoppe, 2018).
Etiology frames how people become associated with a stigmatized group (Smith, 2007). Health
conditions vary greatly in their etiology; that is, people can be associated with a stigmatized condi-
tion for many reasons—biological factors, environmental exposure, personal choices, social deter-
minants, institutional policies, and more. Rather than recognizing health conditions as a product of
multiple and complex forces, etiology content frames one cause for becoming labeled: a person’s
agentic, voluntary, and controllable decisions. For example, weight stigma messages frame body
weight as resulting from personal choices (Heuer et al., 2011), omitting evidence that body weight is
shaped by gene–environment interactions and biological factors (Puhl & Brownell, 2003). In stigma
messages, etiology content may have little to do with scientific evidence; its function is social con-
struction. As labels constitute a group with a shared, stigmatized health condition, etiology content
constitutes the character of the stigmatized group. Framing the onset and offset of a stigmatizing
condition as under the power and control of those affected by it, etiology content fosters stereo-
typing the stigmatized group as essentially flawed and morally malicious, which evokes anger and
encourages retributive reactions toward the stigmatized group (Smith et al., 2016).
Peril describes the danger a stigmatized group poses to the rest of the community (Smith, 2007).
Peril content focuses on person-oriented danger (Smith et al., 2019) and the effects of the stigma-
tized group’s behavior on the community’s well-being and way of life. It includes recommendations
to limit access to community resources and to avoid people labeled with a stigmatized condition
(Smith, 2007). Hence, peril content focuses on the threat of the stigmatized group and seeks to col-
lectively exclude them from the community.
In combination, the four message components evoke cognitive and affective reactions, which,
in turn, result in stigma-related outcomes (beliefs, stigmatization), including onward spread of the
message, which facilitates its diffusion (Smith, 2007, 2011). Early studies of MSC envisioned a
complicated causal explanation, involving multiple cognitive reactions, such as perceived dangerous-
ness, group entitativity, attribution of responsibility, and affective reactions such as fear, disgust, and
anger (Smith, 2012b, 2014). Recent conceptualizations—built upon developments in evolution-
ary psychology (Neuberg & DeScioli, 2015) and experimental tests of MSC (e.g., Smith, 2012b,
2014)—have consolidated the central mechanism into a person-oriented danger appraisal (Smith
et al., 2019). This danger appraisal is an outcome of a generalized detection system (Neuberg &
DeScioli, 2015) that evolved to enable humans to identify threats to survival and distinguish the
threats linked to the physical environment (e.g., pathogens) from those linked to other humans (e.g.,
traitors). To defend effective group functioning, danger appraisal involves both perceiving people as
dangerous and feeling threatened by them (Smith et al., 2019). A stronger person-oriented danger
appraisal leads to stronger stigmatization, such as supporting regulations to track, isolate, and remove
the stigmatized group (Smith et al., 2019).
Danger appraisal alone, however, is not enough to predict social diffusion of stigma messages.
For stigma messages to diffuse within a community, they also need to have qualities that align with
psychological goals: to gain an understanding of the threat, maintain positive impressions of others,
or enhance in-group bonding (Smith et al., 2019; Zhu & Smith, 2016). A recent experiment found
that people tended to share stigma messages that were perceived as more shocking and having more
common ground with message receivers (Smith et al., 2019). Danger appraisal readies a general
response where people recognize threats, use stereotypes, and engage in stigmatization; message
judgments, then, facilitate fine-tuned responses to disseminate stigma messages to specific recipients.

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As person-centered cognition ascends to a central mechanism in creating novel stigmas, recent

theorization has integrated the concept of character. Drawing upon the ancient conceptions of
character, the theory of character dynamics (TCD; Smith & Eberly, 2021) posits that character var-
ies along with three attributes: flexibility, agency, and centralization. Regarding flexibility, character
can be stationary or fluid. Regarding agency, character can be imposed or enforced by others or
personas created by the individual for others to see. Regarding centralization, character can be uni-
fied, simplified, and essential or multifaceted, existential, and highly complex. According to TCD,
the core process of creating stigma through communication is to initiate, enforce, and sustain shifts
from one extreme to the other in this character space: “shifts from turning, agentic, complex, and
decentralized to fixed, acted-upon, unified, and essential” (Smith & Eberly, 2021, p. 149). The shift
facilitates stereotyping—the core process underlying prejudice, racism, and stigma—and deprives the
stigmatized of their right to narrate who they are and leaves them dangerously vulnerable to the loss
of human rights and dignity.
To conclude, how messages describe a health condition and people living with it is consequen-
tial in forming, spreading, and sustaining health-related stigmas as collective norms or social facts.
Although much attention has been placed on stigma as a social phenomenon, it also shapes interper-
sonal interactions, which we discuss next.

Enacting: Production of and Resistance to Stigmatization

The second intersection between communication, health, and stigma is the performance of devalu-
ation and discrimination. Stigmatization can occur interpersonally or through mediated formats
(e.g., news reports). For example, the media portray characters with mental illnesses as volatile (Wahl
et al., 2002), twisted, deranged, irrational, and criminal (Wilson et al., 2000). The earliest work on
stigma in communication journals focused on the interpersonal communication between “normals”
and stigmatized individuals (Thompson & Seibold, 1978). The term “normal” was first used by
Goffman (1963, p. 5) to refer to those who are not members of a stigmatized group and who endorse
the stigma. Goffman’s typology included two other groups: the “own” (p. 30), who share the stigma,
and the “wise” (p. 19), who do not share the stigma and are sympathetic to those who do. In this
chapter, we retain much of Goffman’s typology but use the terms stigmatizers (vs. normal), stigmatized
(own), and sympathizers (wise). In their seminal piece, Thompson and Seibold (1978) noted that the
interpersonal communication between stigmatizers and stigmatized persons had received little atten-
tion from communication scholars; this is still the case (Smith et al., 2016).
The limited extant research proposes four characterizations of stigmatization and its predictors.
According to the first characterization, stigmatization manifests people’s attempts to balance the
tensions between their personal prejudices and normative pressures to act humanely (Thompson &
Seibold, 1978). This tension has been associated with avoidance behaviors (e.g., shortened interac-
tions, greater physical distance) and physical displays of tension (e.g., leg or foot movements; e.g.,
Kleck, 1968; Thompson & Seibold, 1978). It may also be associated with healthcare providers’
refusal to accept patients (Committee on Bioethics, 2009) or to be lax in providing patient protec-
tions (Stringer et al., 2016). The second characterization—drawn from allied research on character
assassination—conceptualizes stigmatization as a means to exact revenge for a perceived injustice, or
as a means to gain access to social or material rewards by reducing other’s social capital and social
standing (Icks & Shiraev, 2014; Icks et al., 2019). The third characterization considers stigmatiza-
tion as interpersonal influence attempts to persuade a target to accept their belief that the target is a
member of a discredited, devalued social group (Smith & Bishop, 2019). The fourth characteriza-
tion conceptualizes stigmatization as value-expressive: It allows stigmatizers to express their personal
stigma beliefs and emotions (Herek, 2000). In contrast to the first characterization, the second,
third, and fourth characterizations of stigmatization (attacks, influence, and value-expression) are

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associated with more blatant behaviors, including ridicule, character assassination, and physical vio-
lence (Herek, 2000; Icks et al., 2019).
Although blatant displays are easier to detect, many subtle versions of stigmatization exist. For
example, the linguistic masking model describes linguistic devices, such as truncation and abstrac-
tion, that are used to camouflage negative behaviors such as stigmatization (Ng, 2007). For example,
stigmatizers can use abstract language to describe negative attributes of a social group; abstract (vs.
concrete) language leads to dispositional attributions about the negative attributes and greater stereo-
type endorsement (Maass et al., 1989).
In health communication, there is no typology of stigmatization (Smith et al., 2016), but there is
a rich catalog of strategies in character assassination research (Icks et al., 2019) that may be heuristic
for creating a typology of stigmatization (Smith & Eberly, 2021). Icks and Shiraev (2014) catego-
rized forms of character attacks based on their scope (individuals or groups), timing (during one’s
life or post-mortem), and momentum (spontaneous or premeditated). For example, name-calling
involves “a quick, short insult; ridicule; or application of specific demonizing labels” (Samoilenko,
2016, p. 116). In contrast, smear campaigns are “intentional, premeditated efforts to undermine an
individual’s or group’s reputation and credibility . . . ad hominem attacks in the form of unverifiable
rumors and distortions, half-truths, or even outright lies” (Samoilenko, 2016, p. 117). Smear cam-
paigns, in fact, may have more in common with stigma communication when they attempt to create
a new stigma but have more in common with stigmatization when the stigma already exists. Icks and
Shiraev’s categories also describe forms of stigmatization that get less attention in health communica-
tion, such as silencing (also known as erasing), a post-mortem strategy of character assassination that
“attempts to erase [the stigmatized group’s] public record from the collective memory” (Samoilenko,
2016, p. 116). There are multiple examples of erasure of stigmatized communities (e.g., Whitestone
et al., 2020; Wojcik, 2000).
Several recent developments have focused on the communication tactics people use when they
are exposed to stigmatization. Stigma management communication (SMC; Meisenbach, 2010) cat-
egorizes a range of tactics based on two dimensions: (a) acceptance or rejection of the stigma’s exist-
ence and (b) acceptance or rejection of people’s personal connection to the stigmatized group. For
example, people who reject personal connections to the stigmatized group but accept that stigma
about the condition exists may use avoidance strategies, such as hiding stigmata and avoiding risky
encounters. In contrast, people who challenge stigma and any application to the self may use deny-
ing strategies, such as rejecting the stigma’s existence, attacking the stigmatizer’s ethos, or educating
others (Meisenbach, 2010). SMC has served as a guiding framework to analyze communication
tactics of stigmatization due to, for example, burns (Noltensmeyer & Meisenbach, 2016), familial
abuse (Brule & Eckstein, 2016), and mental health (Roscoe, 2020).
Stigmatization, performing it and resisting it, are complex communication acts that deserve
scholarly attention. In the next section, we focus on the ways in which people use communication
to cope with the stresses and painful feelings of experienced or anticipated stigmatization.

Coping With Stigmas and Stigmatization: Support and Shame

The third intersection between communication, health, and stigma is coping with being stigmatized
or knowing that a stigma exists. Within the health domain, Scambler and Hopkins (1986) concep-
tualized felt stigma as the fear of and from experiencing stigmatization and discrimination, as well
as “a feeling of shame” (p. 33) associated with seeing oneself as a member of a stigmatized group.
Feeling shame is painful and has been associated with physiological stress responses, such as inflated
cortisol and proinflammatory cytokine, which can have short-term effects on immune functioning
and long-term health consequences (Dickerson et al., 2004).

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This intersection, broadly, plays out in two communication processes: disclosure and social sup-
port. In order to receive support, people need to disclose their potential association with a stigma-
tized group (e.g., receiving test results for a stigmatized condition) or their private experiences of
stigmatization. Coping with health-related stigmas has received ample theoretical and empirical
attention in health communication research. Indeed, some communication theories, such as the
disclosure decision-making model (Greene, 2009), explicitly include perceptions that a health con-
dition is stigmatized as a predictor of whether people disclose their health condition to other people.
Because coping is reviewed elsewhere (see Chapter 10, this volume), we focus our review on shame.
Shame is deeply connected to stigma theories and research (Rains, 2014). The emotion of shame
is personal: As a person feels “disgraced” (Izard, 1977, p. 386) by their failings or shortcomings, they
experience shame. Indeed, shame is so tied to self-perceptions that Izard et al. (2000) argued, “shame
cannot emerge until the child has developed a sense of self ” (p. 24). Shame, as felt stigma, is about
identity: With the example of epilepsy, Scambler and Hopkins (1986) argued that “having seizures”
was not as relevant as identifying as “being epileptic” (p. 33). Other scholars (e.g., Planalp et al.,
2000) explicitly distinguish shame from guilt based on identity: “[S]hame involves being whereas
guilt involves doing” (p. 4, emphasis original). Goffman (1963) even wrote, “shame becomes a central
possibility, arising from the individual’s perception of one of his [sic] own attributes as being a defil-
ing thing to possess” (p. 7). Rains (2014) noted that shame’s centrality appears in measurement, as
well: Items related to perceived shame appear in at least ten different stigma scales created for specific
health topics.
Shame can be a reason that people seek support. Indeed, in general, social support can provide
many benefits (Livingston & Boyd, 2010), such as easing emotional distress (Burleson & Goldsmith,
1998) and reducing loneliness (Nachega et al., 2012). For stigmatized health conditions, however,
multiple meta-analyses have revealed the complex relationships between social support and health
(Livingston & Boyd, 2010; Rains et al., 2015; Smith et al., 2008). Disclosing a stigmatizing health
condition is more consistently associated with receiving stigmatization than receiving support (Liv-
ingston & Boyd, 2010; Smith et al., 2008). The meta-analytic findings from Rains et al. (2015)
showed differences with types of support. For conditions with stronger stigmas, supporters provide
more esteem support (i.e., bolstering one’s self-worth) but less emotional support (i.e., sympathy,
encouragement, or affection) and network support. Esteem support may be useful for addressing
stigma-related shame, as long as it is done well. Holmstrom’s research (e.g., Holmstrom, 2012) shows
that people can feel worse after they receive esteem support messages. Also, if a person is experi-
encing stigma-related shame, the lack of affective and social connection may further diminish their
feelings of self-worth.
To summarize, health stigmas can influence processes of disclosure and social support, and they
are a major stressor that disrupts people’s supportive network (Zhu et al., 2017) and threatens their
fundamental sense of self-worth. In the face of such pernicious damage, it is not surprising that
scholars have attempted to use communication to eliminate existing stigmas. We turn to that schol-
arship next.

Eliminating Existing Stigmas

The fourth intersection between communication, health, and stigma concerns attempts to elimi-
nate existing stigmas. Corrigan and colleagues (2012) categorized stigma-reduction strategies into
three groups: protest, education, and contact. Meta-analyses of the strategies’ effectiveness suggest
that there is not (yet) a reliable means of significantly reducing or eliminating stigmas (Corrigan
et al., 2012, 2015). Because stigma-reduction strategies are reviewed elsewhere (e.g., Corrigan et al.,
2012; Smith et al., 2016), we focus on contact strategies, given their extensive theoretical attention

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(Harwood, 2010; Harwood et al., 2013; Pettigrew et al., 2011), and message-induced empathy
because of its emerging interest in communication research (Oliver et al., 2012).
In the right conditions, interaction with stigmatized people (Allport, 1954) may promote mutual
learning, reduce intergroup anxiety, and motivate people to recategorize an out-group into their in-
groups; this ultimately reduces stigma (Pettigrew et al., 2011). Contact may also induce cognitive disso-
nance, which incites people to change stigmatizing attitudes to align with positive interactions with the
stigmatized group (Pescosolido & Manago, 2018). In a meta-analysis, Corrigan et al. (2012) found that
contact interventions, especially face-to-face versions, produced small reductions in stigma beliefs and
behaviors. Still, contact can be more than twice as effective as education, which seeks to counter false
beliefs about a stigmatized group with factual information. Effective contact interventions need to be
conducted in optimal conditions, such as equal status between groups and strong institutional support
(Pettigrew et al., 2011), which are logistically complex and resource-intensive (Watson et al., 2014).
An exciting avenue for communication research has been in the modes in which to create inter-
group contact opportunities. Contact can occur through various channels, including face-to-face
interactions and media-related platforms, and through different types of interaction, such as direct
and observational. For example, parasocial contact occurs when people observe members of an out-
group in the media (Schiappa et al., 2005), whereas vicarious contact occurs when people observe
other in-group members having contact with out-group members (Herek & Capitanio, 1997).
A central question in these studies is why and how the contact mode shapes the effects of contact on
stigma. These studies provide insights into new mediators, such as narrative transportation (Wong
et al., 2017), but most focus on moderators.
Two potential moderators are richness of self-out-group experience and self-involvement in con-
tact (Harwood, 2010). Compared with face-to-face contact, parasocial contact has a lower level of
richness because the medium (e.g., TV shows) constrains the audience’s verbal and nonverbal com-
munication cues from the parasocial contacts. With vicarious contact, observers have less personal
involvement in the encounter. By contrast, parasocial contact requires people to imagine themselves
as part of the interaction, which can result in greater personal involvement. One argument is that
contact through richer and more self-involving modes strengthens contact’s effects on stigma out-
comes; however, meta-analytic evidence finds no difference in stigma reduction based on parasocial
versus vicarious contact (Banas et al., 2020).
A different line of communication research has examined using messages to induce empathy as
a strategy to eliminate stigma. Empathy is broadly viewed as a process by which people understand,
feel, and affiliate with others (Shen, 2010). People who understand others’ perspectives and vicari-
ously experience their pain may be less likely to blame others for their condition (Chung & Slater,
2013). Studies have linked message-induced empathy to less devaluation (Peng et al., 2020), more
positive attitudes (Oliver et al., 2012), and stronger intention to help stigmatized people (Batson
et al., 2002). However, caution may be warranted. Empathy may be intertwined with pity, which is
an ambivalent emotion (Fiske et al., 2002). Pity encourages prosocial behavior such as helping, but
it also creates a sense of superiority that threatens inclusion (Bartsch et al., 2018) and can engender
infantilization (Corrigan et al., 2001). Another potential problem is that understanding the perspec-
tive of a stigmatized out-group—a cognitive component of empathy (Shen, 2010)—may increase
stereotypes by association (Skorinko & Sinclair, 2013). For example, weight stigma research found
that empathy-inducing messages increased fatphobia (Gloor & Puhl, 2016).
Much less research has focused on reducing internalized stigma among people with a stigma-
tizing condition (Mittal et al., 2012). Internalized stigma is rooted in people’s shame about their
self-identity and the perceived legitimacy of the stigmatized status imposed by others (Corrigan &
Watson, 2002). Accordingly, interventions for internalized stigma aim to promote self-worth and
delegitimize the self-application of stigma (Mittal et al., 2012). One communication strategy is nar-
rative enhancement (Yanos et al., 2011), which assumes that internalized stigma is not just a matter

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of inaccurate beliefs about the self but also the diminished ability to craft new personal narratives. In
narrative enhancement, people with internalized stigma are invited to develop and share stories that
are personally meaningful, are relatable to others, and highlight self-control and resilience during
their stigmatizing experience (Yanos et al., 2011). Narrative engagement, combined with cognitive
therapy, reduced internalized stigma both immediately following the intervention and six months
thereafter (Hansson et al., 2017).
In conclusion, communication may be a critical means by which to influence people who
endorse stigma and people who internalize stigma, but existing interventions have had limited suc-
cess in reducing stigmas (Corrigan et al., 2012; Mittal et al., 2012). Next, we highlight several direc-
tions for future research.

Future Directions
Communication scholars have long taken an interest in stigma, as exemplified by Thompson and
Seibold’s (1978) seminal piece on stigma and social interaction that appeared in one of the early issues
of Human Communication Research. As the current and other reviews (e.g., Smith, 2011; Smith et al.,
2016) showed, research has continued uncovering the intricate but consequential connections among
communication, stigma, and health. In this section, we spotlight three directions for future research.
First, future research is needed to understand the diffusion of stigma messages across social net-
works and over time (Zhu & Smith, 2016). An important question is what drives people to select
certain recipients for stigma messages. A recent study linked the target of sharing with perceived
message features (Smith et al., 2019). People tended to share stigma messages that they judged as
shocking with members who could reach the entire community through fewer intermediaries. By
contrast, when a stigma message was perceived to have common ground with recipients, people
tended to share it with members who had social power. Further, research suggests that the content of
stigma messages evolves along with the steps of telling and retelling (Ganesan & Dar-Nimrod, 2021).
Second, we note the problematic omission of sympathizers from stigma scholarship. In commu-
nication research, sympathizers predominantly appear in the scholarship of coping with anticipated
or experienced stigmatization. What about during stigmatizing encounters? Why do some sympa-
thizers act as bystanders, whereas others actively and directly stand with the target of stigmatization
as it occurs? Research in other areas highlights the importance of allies or “people who have relative
social power or privilege and who stand against injustice directed at people who lack such privilege”
(DeTurk, 2011, p. 570; see also Adams et al., 1997; Forbes & Ueno, 2020). This scholarship should
be considered in future stigma research.
Last, anti-stigma campaigns can lead to unintended consequences. Contact interventions can put
members of the stigmatized community at risk for experiencing stigmatization and further deplet-
ing their already tapped resources through these interventions. Campaigns that attempt to address
myths or to induce empathy by focusing on a particular person can put that person at tremendous
risk (see Guttman’s [1997] discussion of exploitation dilemmas). Future attention on unintended
consequences in anti-stigma efforts is needed; such efforts may benefit from the existing typologies
(Cho & Salmon, 2007) and ethical discussions of health communication campaigns (Guttman, 1997;
see also Chapter 34, this volume).

Final Thoughts
This chapter reviewed four fundamental processes by which health communication intersects with
stigma. Messages with stigma content create profoundly discrediting caricatures from which stigmas
emerge. People use a wide range of verbal and nonverbal behaviors to enact devaluation. People liv-
ing with a stigmatized condition use communication to cope with stigma-related shame, gather allies

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to resist stigmatization, and reconstruct social identities. Communication may also facilitate a reduc-
tion in the prevalence of stigmatization and the elimination of existing stigmas. The intersections
between communication, stigma, and health are dynamic, complex, and multi-layered, influencing
and being influenced by factors at the individual, interpersonal, group, and institutional levels.
To conclude the chapter, we propose ways to advance health communication research on stigma.
First, we need to synthesize ideas from diverse lines of research. One strength of stigma research
in communication is its reach across paradigms, methods, and contexts. For example, 24 out of
49 divisions at the 2020 National Communication Association convention had papers that exam-
ined stigmas or stigmatized groups. As we hope we showed in this chapter, diversity in theorizing
enriches our understanding of the fundamental connections among stigma, communication, and
health. However, the existing scholarship is fragmented, characterized by paradigm-specific assump-
tions, traditions, and language. We encourage researchers to reach out and synthesize ideas across
theoretical territories.
Second, existing theories slice stigma research into distinct levels (e.g., individual, interpersonal,
and group) and focus on the processes within one level. Stigma, however, is an inherently emergent
phenomenon: “[I]t originates in the cognition, affect, behaviors, or other characteristics of individu-
als, is amplified by their interactions, and manifests” at a societal level (Kozlowski & Klein, 2000,
p. 55). We encourage researchers to develop theories that explain the cross-level processes of stigma
communication.
Extant research has described the powerful role of communication in health stigmas. Communi-
cation creates and diffuses new stigmas and helps to enact, sustain, and reinforce stigmas. If done cor-
rectly and ethically, it may also facilitate resisting stigmatization, coping with stigma, and reducing
or eliminating stigmas. Recent research has brought theoretical advancements, compelling empirical
evidence, and increased awareness of the ethical implications of interventions to fight stigma. We
are hopeful that this work will bring us closer to a diverse, inclusive, and equitable society free from
stigma.

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HEALTH AND RELATIONAL
OUTCOMES FOR INFORMAL
CAREGIVERS AND CARE-
RECIPIENTS
Jacquelyn Harvey, Meara H. Faw, and Elizabeth S. Parks

Betsy was a 49-year-old caregiver for her 72-year-old mother who struggled with dementia. Betsy’s mother used
to live in Arizona with her husband, but shortly after his death, she returned to her home state of Minnesota,
for she could hardly remember to eat each day let alone take needed prescriptions. As time went on, it was easy
to see the dementia progressing: Family would stop by and she would forget their names or mistake granddaugh-
ters for daughters even when both were in her presence. Betsy was able to get her mother into an assisted-living
facility close by. Despite having available care in such a facility, Betsy still left her full-time job each day to feed
her mother, buy her necessary items, and keep her engaged with puzzles and Scrabble. When asked how she
felt about the experience, Betsy replied, “it’s one of the most difficult things in life to watch your family member
go like that . . . doing everything you thought you possibly could, but still looking back and regretting that you
didn’t do more.” Her experience is similar to that of many caregivers. Betsy spent 20–25 hours per week provid-
ing care. When gauging how much money she had spent on caregiving, she couldn’t fathom a number and simply
said “thousands” over the five years of care she provided. In the end, she still felt it wasn’t enough.
Informal caregivers comprise a subset of the population that spends substantial time and energy
caring for loved ones outside of a healthcare setting. Most commonly, these caregivers do so free
of charge to the care-recipient while using their own resources for healthcare expenses. Although
these acts are often done out of love and concern or feelings of respect and obligation for the care-
recipient (typically a family member or close friend), a multitude of both positive and negative
personal implications arise due to the caregiving experience as it may transition through various
life stages. In this chapter, we discuss some of these experiences and the implications they have for
caregiver and care-recipient communication. We begin with an overview of caregiving statistics to
paint a picture of the current status of care needs. We primarily focus this overview on caregiving
in the United States, given the availability of data and the fact that informal caregiving is organized
differently depending on context, nationality, cultural values, available support resources, and familial
as well as societal responsibilities. We move on to discuss the unique challenges and opportunities
that caregivers face and how they tend to affect caregivers and care-recipients across co-cultures and
relationships in the United States. We end with a section that outlines examples of evidence-based
programming designed to help caregivers enhance their own health and well-being, as this tends to
result in improved caregiver-recipient communication and relational well-being. It is our hope that
this chapter paints a clear picture of the ways in which caregiver and care-recipient welfare may be
impacted throughout the caregiving experience.

DOI: 10.4324/9781003043379-9  91
 Jacquelyn Harvey et al.

Approximately 40% of U.S. residents report having provided care to an older loved one, and for
a quarter of these individuals, the amount of time spent each week on care rivals hours spent at a
full-time job (Titus et al., 2020). In addition, research suggests that approximately one in six children
experience developmental disabilities that may involve a higher need for care than those without
similar identities (Boyle et al., 2011). In fact, some individuals report caring for both aging parents
and young children simultaneously. The value of unpaid caregiving was estimated at 470 billion dol-
lars in 2017, following 34 billion hours of provided care (Reinhard et al., 2019). Today, this number
is undoubtedly similar or perhaps even higher, considering that the percentage of aging individuals
who are more likely to need care is increasing across multiple high-population countries (Plöthner
et al., 2019). Indeed, projections estimate that the number of people needing care by the year 2050
will approximate 19 million, as opposed to 8 million who needed care at the start of the millennia
(Department of Health and Human Services, 2003).
The average caregiver tends to be middle-aged and married with children; they spend roughly
20–24 hours per week on care, with longevity of caregiving approximating four to five years (Family
Caregiver Alliance, 2009). There are slightly more female caregivers (58%) than male (Centers for
Disease Control, 2018). Health issues of care-recipients vary, but the most prominent areas include
dementia/Alzheimer’s, cancer, psychological illness, cardiovascular disease, stroke, and developmen-
tal disabilities (Liddle et al., 2018; Schulz & Tompkins, 2010). Despite a wide range of caregiving
contexts, similarities in care provisions often exist. Typically, caregivers report duties such as trans-
portation assistance, household cleaning, grocery purchases, meal preparation, mobility and bathing
assistance, and medication adherence assistance (Gillespie et al., 2014; Schulz & Tompkins, 2010).
These task-oriented duties are often coupled with communication-related activities such as emo-
tional support and care, coordinating care-related and end-of-life decision-making, and acting as a
liaison between the care-recipient and healthcare providers (Schulz & Tompkins, 2010). Caregiver
and care-recipient relationships are affected by the caregiving experience in a multitude of ways,
depending on how each individual negotiates and manages the illness experience (Braun et al., 2009;
Vess et al., 1985). In the next section, we discuss various challenges and health issues that caregiv-
ers face and how they can impact caregiver-recipient communication. We then move on to discuss
prosocial outcomes that can arise in light of caregiving experiences.

Challenges and Health Issues Associated With Caregiver

and Care-Recipient Communication

Physical Health Issues

Although caregivers have reported personal and relational growth throughout the process of car-
egiving (Hogstel et al., 2006), a number of challenges can arise, particularly pertaining to caregiver
health. In fact, some studies have suggested that caregivers are at greater risk for early all-cause mor-
tality due to the stress accompanying this type of role (Schulz & Beach, 1999).
Caregivers tend to experience prolonged distress that undermines physiological functioning (Pin-
quart & Sörensen, 2007). On the extreme end of the spectrum, research has indicated that this can
result in a 63% increase in mortality, even after controlling for other influences on an individual’s
health (Schulz & Beach, 1999). There are also less extreme, but no less important, physical influences
on health including increases in immune response antibodies, increased stress hormone secretion,
and a decrease in overall reports of global health (Vitaliano et al., 2003). A meta-analysis on caregiv-
ing indicates that if caregivers engage in physically demanding work, this can also cause musculo-
skeletal issues, aggravate arthritis or other pre-existing physical conditions, or cause acute physical
injuries (Pinquart & Sörensen, 2007; Russell, 2008). In addition, the stress of caregiving can result in
cardiovascular or hormonal disruptions, a reduction in immune system capacity, and greater fatigue

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following stress (Andres-Garcia et al., 2012; Capistrant et al., 2012; Faw, 2018). Overall, the degree
of physical impact that caregiving has can be dependent on the perception, longevity, and degree of
caregiving duties an individual takes on, such that caregivers who perceive themselves to be strained
are more likely to experience physical health issues than caregivers who do not report strain or dif-
ficulty (Schulz et al., 1997).
These physical health issues can appear in all populations but are particularly salient in commu-
nities that already have elevated health risks. For example, research suggests African Americans are
twice as likely as their white counterparts to acquire and exhibit comorbid conditions of hyperten-
sion, diabetes, and Alzheimer’s disease; less likely to receive quality healthcare, especially in end-of-
life stages; but also more likely to offer in-home primary care for aging family members rather than
nursing home care (Aaron, 2016; Dillon & Basu, 2016). These patterns also have economic implica-
tions, with lost wages and other types of systemic inequity, particularly for people filling feminine
family roles (e.g., wives and mothers) who are more likely to care for non-spouse family members
(Baus et al., 2005; Dilworth-Anderson et al., 2005). This is, of course, subject to the experiences and
approaches individuals take in relation to their caregiving role. Nevertheless, the physical effects of
caregiving naturally impact the relationship between caregiver and care-recipient, and these relation-
ships are performed within a broader cultural context that also impacts the support process (Feng &
Burleson, 2006), as well as the likelihood of psychological and emotional issues arising.

Psychological and Emotional Health Issues

Caregivers also experience a variety of psychological and emotional issues, and many times these
issues are reported to be greater than the physical toll of caregiving (Pinquart & Sörensen, 2007).
Commonly, caregivers report being depressed and experiencing high levels of loneliness (Beeson,
2003; Faw & Leustek, 2015), burnout (particularly when faced with abhorrent or aggressive behav-
ior; Hiyoshi-Taniguchi et al., 2018), emotional exhaustion and depersonalization (Ybema et al.,
2002), difficulties with resilience and coping (Wilks et al., 2011), and decreased self-efficacy coupled
with lower levels of overall well-being (Pinquart & Sörensen, 2005).
Across all racial and ethnic groups, caregivers commonly experience worry and stress; however,
different groups may be more susceptible to these health issues due to cultural variables (Dysart-Gale,
2007). For example, stigma of illness may lead to heightened degrees of social secrecy and individual
burden (e.g., Asian caregivers), preference for not engaging spiritual or faith supports (e.g., white
caregivers), language barriers and discrimination preventing access to needed support services (e.g.,
Hispanic caregivers), and cognitive dissonance between a family’s cultural values and a dominant
healthcare institution’s set of professional norms (e.g., African American caregivers; Feng & Burle-
son, 2006; Vickrey et al., 2007; Yoo et al., 2010). In addition, demographic factors such as a car-
egiver’s socioeconomic class, racial identity, or immigration and social integration status may impact
individual and structural opportunities to access additional support or treatment that might allow
them to better cope with the stress of caregiving and create spaces of respite in which to practice
self-care (Basnyat & Chang, 2017; Dillon & Basu, 2016; Gallart et al., 2012). Indeed, acting as a
caregiver can negatively impact a person’s life trajectory not only in terms of physical, psychological,
and emotional health but also in terms of life options, economic status, and broader long-term career
and relational choices (Ivery & Muniz, 2017). Caregivers in vulnerable societal positions can thus
become even more vulnerable when acting as long-term caregivers and negotiators for loved ones.

Caregiver Health and Caregiver-Recipient Communication

The experiences described earlier are detrimental for relationships even outside of caregiving con-
texts, but when managing an illness is included, there are more opportunities for stress to hamper

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relational communication. Research indicates that communication patterns between caregivers and
care-recipients are directly correlated with the well-being of both members (Edwards & Noller,
1998), and social exchange and equity theories dictate that individual perceptions of reciprocity/
mutual benefit shape relational partners’ communal exchanges and overall satisfaction in a relation-
ship (Cook & Rice, 2006). Essentially, a relationship characterized by an unbalanced level of give
and take (i.e., caregiver and care-recipient) can create greater relational rifts between members
(Sprecher, 2001). Furthermore, expectations of the relational channels through which reciprocity
and exchange should be performed can vary based on cultural values, norms, and communication
practices (Parks, 2019). In caregiving contexts, caregivers in particular may perceive inequity in
their relationship, and when this occurs, both individuals tend to experience greater dissatisfaction
(Brackbill & Kitch, 1991). A continued lack of balance and added strain can impact caregivers’ ability
and willingness to communicate care in supportive and prosocial ways (Harvey & Faw, 2018; Wil-
liamson & Shaffer, 2001). Perceptions of reciprocity, on the other hand, can do much to alleviate
difficulties and perceptions of burden (Reid et al., 2005). Specifically, from an exchange perspective,
greater intimacy and healthier relationship perceptions equate to fewer perceived costs for the car-
egiver (Walker et al., 1992). As such, if individuals are experiencing strain due to inequity, focusing
on relational improvements may help mitigate detrimental effects, particularly if little can be done
to change the status of reciprocity.
In addition to difficulties associated with inequivalent reciprocity, relational dialectics theory
(RDT; Baxter & Montgomery, 1996) provides a framework for identifying other issues caregiv-
ers may experience. Specifically, RDT posits that relational members often experience competing
desires and therefore engage in contradictory discourse that increases the likelihood for conflicting
viewpoints to impact the relationship (Erbert, 2000). For example, although both caregiver and
care-recipient may wish for the illness to subside or wish to improve recipient well-being, competing
viewpoints may emerge regarding how to work toward such a goal. One partner may suggest that
eating healthy and exercising can serve to achieve this goal, whereas another believes that relaxation
and stress reduction are necessary. Competing discourses such as these can create less supportive and
more conflicting interactions, not just between the caregiver and the care-recipient but also between
multiple members of a given family who all have perspectives on how best to give care. Indeed, Rif-
fin and colleagues (2018) suggest that two caregiving typologies exist: supportive and contradictory.
Supportive relationships comprise those in which a high level of agreement exists between decision-
making and disease management, task orientation, and mutual understanding. Contradictory rela-
tionships are characterized by disagreement over these issues, as well as a lack of appreciation toward
caregivers’ and care-recipients’ individual experiences (Riffin et al., 2018).
Competing perspectives can also occur internally and can be expressed by just one individual. For
example, Baxter et al. (2002) identified competing dialectics for wives whose husbands have demen-
tia. Their study revealed that wives experience dialectics regarding openness-closedness in that they
want to engage in open communication with their husband, but they also want to avoid conversa-
tions that may invoke emotional distress. They also reported experiencing a presence-absence dia-
lectic in that their husband was physically present, but absent emotionally. This was coupled with
feelings of certainty-uncertainty regarding their spouse’s cognitive presence, as well as a dialectic
regarding past-versus-present views of their relationship. These internal competing dialogues can
impact the relationship on both an individual and a relational level, as members must work to nego-
tiate and manage contradictory feelings and perspectives about the relationship and the caregiving/
receiving experience.
Taken together, the research mentioned earlier suggests that it is important for caregivers and
care-recipients to communicate with one another about ways to create a more reciprocal and bal-
anced relationship or ways of mitigating negative feelings pertaining to existing imbalances, both
within their dyadic relationship and in the context of their broader network of support. In addition,

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when tensions and competing discourses arise, caregivers and care-recipients can work toward
understanding one another’s viewpoints and reducing the degree of tension.
Despite the aforementioned difficulties and detriments associated with caregiver and care-recip-
ient health and communication, research also outlines a number of positive outcomes that arise in
this context. Indeed, some researchers argue that studies have overestimated the burden associated
with caregiving and that caregiving roles are instead associated with an increase in longevity (Roth
et al., 2015), improvements in aspects of caregiver well-being (Schwartz & Hadar, 2007; Semi-
atin & O’Connor, 2012), and strengthened relationships between caregivers, care-recipients, and
their broader family and community networks (Baus et al., 2005; Yoo et al., 2010). We turn now to
discuss these reported benefits in greater detail.

Personal and Relational Benefits in Caregiving Contexts

Studies have consistently found that caregivers report complex feelings pertaining to their caregiving
role (Roscoe et al., 2009; Roth et al., 2018), and although the challenges associated with caregiving
should not be minimized or ignored, it is important to recognize that caregiving can also result in a
number of positive outcomes. The experience of small “uplifts,” positive moments, and personal ful-
fillment during caregiving can attenuate negative effects (Cohen et al., 2002). In fact, a majority of
caregivers recognize at least one positive aspect of their caregiving experience (Anderson & White,
2018; Cohen et al., 2002; Magliano et al., 2014), although people who identify with communi-
ties of color tend to more quickly and frequently report benefits of caregiving than do their white
counterparts (Vickery et al., 2007). In addition, a growing body of evidence from several large-scale
studies indicates that family caregivers may experience reduced mortality rates compared to their non-
caregiving counterparts (Roth et al., 2018). This finding has led some researchers to posit caregiving
as a potential buffer from the negative effects of stress, complicating the picture of caregiving and its
relationship with well-being (Brown & Brown, 2015; Roth et al., 2018).
The research outlining potential benefits associated with caregiving is largely grounded in frame-
works that highlight the effects of prosocial helping behaviors on health and well-being. These
studies indicate that providing emotional or practical forms of assistance improves well-being across
a variety of indices, including mental, physical, and relational health (Brown et al., 2003; Brown &
Brown, 2015). The value of prosocial helping behaviors to create and maintain personal relationships
manifests in several communication theories as well, including affection exchange theory (Floyd
et al., 2010), the theory of resilience and relational load (Afifi et al., 2016), and the idea of relational
maintenance in interpersonal relationships (Canary & Stafford, 1992). Models of communal coping
(Afifi et al., 2020; Lyons et al., 1998) also highlight the potential benefits that can result when an
individual assumes a caregiving role. Communal coping occurs when two or more individuals agree
to share the responsibility for, and management of, a given stressor (Lyons et al., 1998). Adopting a
communal orientation toward chronic illnesses and other health challenges is associated with positive
outcomes among caregivers, including enhanced relationship maintenance and adjustment, as well
as feelings of efficacy and personal growth (Koenig Kellas et al., 2019; Lyons et al., 1998). The fol-
lowing sections of this chapter further illuminate benefits associated with caregiving that have been
documented in research.

Mental/Emotional Benefits
Much of the research outlining positive aspects of caregiving focuses on mental and emotional ben-
efits. Across numerous contexts, feelings of personal growth or accomplishment are common among
informal caregivers (Anderson & White, 2018; Kang et al., 2013). For example, one study involving
parental caregivers of children with muscular dystrophy found that 72% of participants experienced

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some form of personal growth (e.g., becoming a stronger person; Magliano et al., 2014). Another
study examining cancer caregivers found that caregivers indicated increased feelings of personal
mastery and confidence through their caregiving experiences (Kang et al., 2013). Across studies,
personal growth could take the form of acquiring or developing new sets of skills, such as learning
to advocate successfully for their care-recipient or engaging in difficult conversations (Anderson &
White, 2018). Indeed, a sense of competence and mastery related to caregiving is often a crucial
part of caregivers’ identities (Miller et al., 2008). Personal growth has also been associated with less
tangible but, in some situations, more meaningful experiences related to changes in caregivers’ char-
acter (e.g., becoming more patient) or cultivating a greater sense of self-efficacy (Tarlow et al., 2004).
In addition to personal growth, caregivers report experiencing positive changes related to their
general outlook on life (Tarlow et al., 2004). Many studies (Kang et al., 2013; Miller et al., 2008;
Rosco et al., 2009) indicate that caregivers find a renewed sense of meaning or purpose through
their caregiving role. In a study examining the experiences of more than 1,200 dementia caregivers,
approximately 72% felt that their caregiving role allowed them to better appreciate life, and 63%
felt that caregiving gave them a more positive outlook (Tarlow et al., 2004). Additionally, caregivers
report a reassessment of priorities and values, such that their post-caregiving life focuses on “what
is really important” (Kang et al., 2013, p. 567). Caregiving experiences can also create new spaces
for humor to offer moments of relief as individuals cope with transitioning life stages (Sparks et al.,
2005). Other studies have found important connections between caregiving and a renewed sense
of spirituality and religious connection that culminated in caregivers’ experiences of post-traumatic
growth and resilience, especially among communities of color (Baus et al., 2005; Teahan et al.,
2018; Vickrey et al., 2009). The greater sense of meaning derived from caregiving is an important
part of larger theoretical frameworks connecting altruistic or helping behaviors with positive health
outcomes (Brown et al., 2003)

Relational Benefits
In addition to individual benefits, caregivers experience relational benefits from their caregiving
role. In fact, several studies highlight caregivers growing closer with the care-recipient, their fami-
lies, and even their broader communities through the caregiving process (Anderson & White, 2018;
Bute et al., 2007; Cohen et al., 2002; Li & Loke, 2013). One study examining the experiences of
caregiving for individuals with communication-debilitating illness (illnesses that dramatically change
or reduce a person’s ability to communicate) found that caregivers reported positive relationship
changes with the care-recipient. In fact, some participants reported experiencing more and better
communication with the care-recipient despite (or even because of) the nature of their condition
(Bute et al., 2007). Other studies examining cancer caregivers (Kang et al., 2013; Li & Loke, 2013)
found that participants cited a greater sense of appreciation and affection for their care-recipient,
with one caregiver explaining, “We fell more in love as time got shorter and she became sicker”
(Hudson, 2006, p. 669). Another positive relational benefit experienced by caregivers comes from
feeling useful, valued, and appreciated and experiencing the benefit of receiving support from oth-
ers in their broader relational networks (Tarlow et al., 2004; Vickrey et al., 2007). Across studies,
caregivers report feeling good about themselves for meeting care-recipients’ needs and supporting
them in meaningful ways (Tarlow et al., 2004), and caregivers enjoy the appreciation and gratitude
they experience for enacting this role (Anderson & White, 2018; Li & Loke, 2013).
Outside of the caregiver/care-recipient relationship, some caregivers experience enhanced rela-
tionships with family members and their broader community. Several studies (Amaro, 2017; Ander-
son & White, 2018; Kang et al., 2013; Li & Loke, 2013; Tarlow et al., 2004) outline how caregiving
experiences enable caregivers to bond with family members, drawing people closer. One study
examining the role of siblings in caring for an ailing parent found that expressions of gratitude

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among siblings could facilitate relationship building and better caregiver outcomes (Amaro, 2017).
Another study found that caregivers’ use of positive framing (or communicating about their caregiv-
ing experiences from a place of positivity rather than stress or burden) allowed them to reconnect
with family members in meaningful ways and facilitate positive coping (Alpert & Womble, 2015).
Beyond the family unit, caregiving can create a sense of connection in the greater community (Faw
et al., 2020; Magliano et al., 2014). Although some caregivers may be reluctant to seek support out-
side of the family network due to their cultural values, they may be more willing to strengthen fam-
ily bonds and intimacy to demonstrate inclusion and family harmony (Feng & Burleson, 2006; Yoo
et al., 2010). As one study outlining caregiving experiences for seriously ill individuals explained,
“Participants reported that time with the ill person deepened their relationship, increased apprecia-
tion for the role of family members, and enhanced nonfamily relationships, including peer groups
and volunteer opportunities” (Anderson & White, 2018, p. 268).

Interventions and Research-Based Programming to Improve Caregiver’s

and Care-Recipient’s Personal and Relational Health Outcomes
It is possible for the outcomes listed previously to simultaneously co-exist and for caregivers or
care-recipients to experience both benefits and drawbacks to the caregiving relationship. Because
there is a high likelihood for stressors to arise despite potential benefits, researchers have turned their
attention toward cost-effective interventions that can improve aspects of caregiver and care-recipient
well-being. Many of these interventions are home- or community-based, and they tend to coincide
with both health and relational improvements. We turn our attention now to sharing the details,
components, and outcomes of three types of caregiver and care-recipient interventions as a means
of illustrating how small modifications in daily activity may provide opportunities for enhancing
caregiver and care-recipient health. In addition, we hope these discussions prompt further develop-
ment of diverse intervention strategies because, as Ivery and Muniz (2017) point out, care interven-
tions must be diverse in order to appeal to participants “within the context of their perspectives on
family responsibilities, support networks, and resources” (p. 319). This is particularly important as
family-centered interventions are becoming increasingly common, and their success often depends
on increased intercultural competence and awareness (Vigil & Hwa-Froelich, 2004).

Mindfulness-Based Interventions
Mindfulness comprises an attentional process wherein one focuses their thoughts on present-
moment occurrences and stimuli instead of rehashing the past or worrying about potential future
scenarios that might arise. This relatively simple notion of staying focused on the present moment
can have profound implications for personal health and well-being. Much of thought is automatic
and tends to be focused on matters of the past or future. Indeed, humans are only focused on the pre-
sent moment about half of the time (Killingsworth & Gilbert, 2010). For caregivers, this can often
mean that their time is spent worrying about a care-recipient’s needs and well-being, or it can mean
focusing on the stresses and strains that caregiving is imposing on a caregiver and their family. The
act of being mindful appears to be an effective way to improve quality of life and mitigate distress-
ing thoughts from arising as often as they otherwise might (Paller et al., 2015; Waelde et al., 2004).
Mindfulness-based interventions (MBIs) that reduce stress can include activities such as medita-
tion, body scans, breathing practices, and focused walking/eating practices (Kabat-Zinn, 1990).
Numerous empirical studies have found support for the efficacy of such mindfulness practices across
medical and community settings (for meta-analyses see Grossman et al., 2004; Khoury et al., 2015).
Research specific to caregiving finds that MBIs are efficacious for significantly improving stress,
depression, and anxiety (Li et al., 2016). In addition, perceptions of burden are lower following

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MBIs, and perceptions of social support and mental health are improved (Whitebird et al., 2013).
Importantly, increasing caregiver levels of mindfulness enhances not only caregivers’ own well-being
but also that of care-recipients. For example, research on individuals with profound disabilities finds
that they report greater happiness levels if receiving care from someone who completed mindful-
ness training (Singh et al., 2004). Furthermore, mindfulness is associated with a greater likelihood
of open communication between couples in which one member is facing lung cancer (Schellekens
et al., 2017). Together, these studies showcase how a relatively simple, free, and home-based practice
can drastically improve outcomes for caregivers and care-recipients.

Expressive Writing Interventions

Expressing one’s fears, frustrations, hopes, and dreams for themselves or a caregiver/care-recipient
can also have profound impacts on caregiver well-being. Studies focused on emotional expression
find that the release of pent-up emotions is associated with significant improvements in psychologi-
cal health and trauma reduction, according to a recent meta-analysis (Riddle et al., 2016). Expressing
emotions surrounding caregiving can serve as an emotional outlet for individuals who otherwise
keep thoughts and feelings to themselves (Pennebaker & Chung, 2011). This emotional release
tends to substantially improve various indicators of well-being. For example, caregiver perceptions
of burden, stress, and depression decrease following expression of thoughts relevant to the caregiv-
ing experience (Harvey et al., 2018). In addition, emotional writing for both care-recipients and
caregivers can improve anxiety, depression, and memory/learning (Cash & Lageman, 2015). These
effects, however, can be dependent on the type of expression that an individual uses, as detailed next.
Most research on emotional expression has followed the “expressive writing” paradigm first devel-
oped by Pennebaker and Beall (1986). This paradigm suggests that writing positively or negatively
about traumatic events can differentially improve one’s health following emotional release (King &
Miner, 2000). Writing positively about a traumatic experience has been termed “benefit-finding”
and is associated with better mood, a decrease in hospital visits, and increases in positive emotion
(Burton & King, 2004; King & Miner, 2000). Writing negatively about a traumatic experience has
been termed “traumatic disclosure” and is also associated with health improvements, including a
decrease in physician visits and an increase in immune and autonomic nervous system functioning
(Pennebaker & Chung, 2011). Some researchers argue that writing positively about trauma negates
the short-term increase in stress that can accompany negative forms of expression (King, 2002).
Others suggest that traumatic disclosure outperforms benefit-finding in improving overall health
(Lyubomirsky et al., 2006). Regardless of writing approach, both forms appear to create positive
outcomes for caregiver well-being. In addition, a multitude of research has found that expressive
writing can be helpful for those experiencing illness themselves (Stanton & Danoff-Burg, 2002) and
for improving caregivers’ supportive messages toward care-recipients (Harvey et al., 2019). Given the
efficacy of expressive writing across multiple settings and contexts, it can be a useful approach for
caregivers or recipients looking for a cost-effective way to improve health.

Community-Based Arts Engagement Interventions

From a communal or dyadic perspective, community-based arts engagement (CBAE) interven-
tions can also provide important avenues for enhanced communication between caregivers and
care-recipients while promoting overall well-being (Brotons & Marti, 2003; Camic & Chatterjee,
2013). CBAE interventions usually involve providing caregivers and care-recipients access to creative
experiences in public spaces, such as guided tours through art museums or art classes (Camic et al.,
2016; Griggs et al., 2020), movement or dance classes (Koch et al., 2015; Sharp & Hewitt, 2014),
or musical or theater events (Davalos et al., 2019). The goal of these programs is to provide caregiver

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and care-recipient opportunities to experience fun and engaging environments together while har-
nessing the emotional, mental, and sometimes physical benefits associated with creative enterprises
(National Collaborating Centre for Mental Health, 2007).
Evidence from CBAE interventions suggests they can produce many positive outcomes for car-
egivers and care-recipients. For example, a CBAE program that facilitated mask-making workshops
for adults with dementia and their caregivers presented opportunities for relational maintenance and
enhanced communication among dyads. In addition, the ability to interact with others while mak-
ing their masks stimulated memory for participants with dementia and resulted in greater quantity
and quality of communication between the caregiver and care-recipient during sessions (Griggs
et al., 2020). For example, in terms of quantity, there were a greater number of exchanges between
participations with dementia and their caregiver or others in the workshop, and in terms of quality,
participants with dementia would remember and discuss parts of their life from the past, like a travel
experience or the name of a former family pet.
Another example of the potential for CBAE to positively influence caregiver and care-recipient
experiences comes from a multiyear intervention called the B Sharp program (Davalos et al., 2019;
Faw et al., 2020). The B Sharp program provides adults with dementia and their caregivers free
tickets to community symphony concerts. Before each concert, dyads are invited to participate in a
free social hour where they can interact with others, as well as with members of the research team
and community partners. Evidence suggests that caregivers benefit greatly from these interventions,
as they experience enhanced perceptions of social support and community connectedness, positivity,
and valuable moments of escape from their usual caregiving routine (Faw et al., 2020). These find-
ings align with results from other CBAE programs, which show that caregivers experience reduced
perceptions of stigma (Bienvenu & Hanna, 2017; Lepp et al., 2003) and increased feelings of social
inclusion (Camic & Chattterjee, 2013) when they are able to engage in community-based interven-
tions with their care-recipient. Caregivers also report benefits in their relationship quality and com-
munication with the care-recipient, thus implying that CBAE is a useful intervention approach for
the cultivation of multiple prosocial outcomes (Brodaty et al., 2003; Camic et al., 2016).

Concluding Remarks and Suggestions for Future Research

Overall, this chapter was designed to give readers a sense of the wide range of experiences informal
caregivers are likely to face, both positive and negative, while pointing to cultural and demographic
factors that can influence these outcomes. In addition, we sought to provide concrete examples of
applied interventions that share the goal of improving caregiver and care-recipient lives when faced
with challenges. More research is still needed, and we hope communication scholars will take up
the call to examine how communication theory can guide interactions, interventions, and outcomes
in each of these areas. Specifically, future research in this area should consider investigating how
individual, dyadic, and community dialectics may differentially impact caregiver and care-recipient
health and interpersonal outcomes. In addition, more longitudinal and dyadic studies are needed
to assess changes over time in perceived exchanges and imbalances across the caregiver/recipient
relationship.
From an intervention approach, although the positive effects of mindfulness on caregiving out-
comes is robust, future research should continue to examine dyadic, interaction-based effects of
mindfulness practices, given that currently research on dyadic outcomes is still relatively scant. In
addition, more research should be conducted on interdependent outcomes of expressive writing and
the ways in which writing may improve relational well-being for the dyad; we hope communication
researchers will take up the call to study these effects. Communication scholars have unique perspec-
tives regarding the design, implementation, and assessment of these types of programs, and additional
research should examine the relational and communicative outcomes experienced by caregivers and

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care-recipients engaging in the types of mindfulness, expressive writing, and CBAE interventions we
outlined. Finally, it is important to note that sampling strategy and the definition of what constitutes
informal caregiving have each impacted research results and interpretations (Schulz et al., 1997). As
such, to truly determine the impact caregiving has on personal and relational well-being, we need
to be mindful of research design approaches and the corresponding implications they have on gen-
eralizability of outcomes, as well as how these choices can either limit or expand our understanding
of caregiving across a variety of demographics, cultures, and contexts.

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 8
FAMILY HEALTH
COMMUNICATION
Maureen P. Keeley and Lauren Lee

Communication about health is a routine practice in which families engage regularly, evolving across
time as members age and experience various phases of the human lifespan. Topics of conversation
range from daily lifestyle and health choices to ordinary lifecycle health conversations, as well as
communication triggered by sudden, chronic, and/or terminal illnesses. Family talk about health can
range from relatively approachable conversations about wellness (e.g., diet and exercise; see Young &
Burke, 2017) to more challenging conversations about treatment choices for illnesses (Parrott, 2009)
or participating in final conversations (Keeley & Generous, 2017).
Communication in the family about health can be triggered suddenly by events such as the
COVID-19 pandemic (e.g., talk about social distancing and wearing masks to avoid the virus) or
ongoing conversations about chronic illnesses (e.g., “Have you taken your medicine to control your
diabetes or bipolar illness?”). Thus, individuals within a family system are interconnected and are
often intimately involved in making decisions about the health of their loved ones both daily and
over time. Additionally, families have a critical social-biological influence on the development of the
social and emotional skills necessary to adapt to stressful situations (Luecken et al., 2013). Specifically,
children who are raised in loving, cohesive, and supportive family climates are instilled with vital
protective factors that stimulate good physical and mental health; conversely, negative, toxic, and
stressful environments can have a detrimental toll on children’s health across the lifespan (Luecken
et al., 2013). Ideally, families teach children adaptive social and emotional skills through playing, role
modeling, responding to their questions, and correcting socially undesirable behaviors, as well as
teaching them how to negotiate conflict and stressful situations (Luecken et al., 2013).
Without a doubt, what happens in childhood within the family context affects individuals’
actions and reactions to health issues and problems across their lifespan. For instance, families that
are cohesive and supportive create significant protection, stimulating positive physical and mental
health outcomes (Luecken et al., 2013). Conversely, stressful and toxic childhood environments and
experiences such as abuse, neglect, conflict, parental mental illness, addictions, and nasty divorces
can have long-term harmful effects on health (Luecken et al., 2013). Consequently, examining fam-
ily context and family issues is critical for assessing their effect on health. Thus, in this chapter we
highlight how family members influence one another on six factors important to communication
regarding health: (a) providing caregiving and social support, (b) socialization, (c) sensemaking, (d)
patterns of communication about wellness and illness, (e) developing resilience, and (f) exploring
family health moral dilemmas.

DOI: 10.4324/9781003043379-10  105

 Maureen P. Keeley and Lauren Lee

Family Defined and Family Factors That Influence

Health Communication
What is a family? For the purposes of this chapter, a family is defined as networks of
people who share their lives over long periods of time, bound by ties of marriage, law,
or commitment, legal or otherwise, who consider themselves as family and who share a
significant history and anticipated future of functioning as a family.
(Galvin et al., 2019, p. 8)

The broad definition of family is important because it is reflective of the current state of families.
This definition goes beyond the traditional two-parent family (either heterosexual or LGBTQIA+)
that results in one or more children. Families also include the childless family, single-parent fam-
ily, stepfamily, multigenerational family, and intentional family (i.e., members do not have legal or
blood ties but consider each other family with a significant history and anticipated future; Galvin
et al., 2019).

Family Caregiving, Systems, and Social Support

Family caregivers perform an array of essential tasks that include providing companionship, daily
life assistance, cooking, house cleaning, medical care, and forms of physical care for family mem-
bers who can no longer care for themselves (Pew Research, 2015). The caregiver is most often the
spouse/partner or family member of the individual who requires ongoing medical assistance (Care
Giver Alliance, 2019). More than 65 million Americans, equating to 29% of the U.S. population,
provide care services for chronically ill, disabled, or aging family members. These caregivers spend
an average of 20 hours per week providing informal care for their loved one (National Alliance for
Caregiving, 2009). Recent research suggests that one in ten parents in the United States are multi-
generational caregivers who also provide unpaid care for an adult (Pew Research, 2018). Some of the
most common health conditions requiring family caregiving assistance include cancer, Alzheimer’s
disease, Parkinson’s disease, developmental disabilities, traumatic brain or spinal cord injuries, HIV/
AIDS, stroke, asthma, mental health disorders, advanced heart disease, diabetes, and advanced arthri-
tis (AARP, 2015). All these health conditions take a great deal of time, attention, energy, money,
and communication (with the sick and with medical experts) to care for ill family members. As the
family systems framework suggests, these statistics illustrate the high degree of interdependence of a
family, especially within the context of health.
Systems theory is critical because it highlights the interconnectedness of the individual members
and it underscores the importance of communication as the primary way that members create,
maintain, and alter family health behaviors, decisions, and outcomes. Family members’ actions and
reactions to matters pertaining to wellness, illness, and overall health issues influence the entire fam-
ily (Rosland et al., 2012). Thinking of a family as a system incorporates seven relevant factors: inter-
dependence, wholeness, self-regulating patterns, interactive complexity and punctuation, openness,
complex relationships, and equifinality (Galvin et al., 2019). Interdependence highlights the notion
that any change with one member of the family, such as through a health crisis, affects all family
members. Wholeness emphasizes that the whole is greater than the sum of its parts; accordingly, indi-
viduals with strong family support systems usually do better in a health crisis and live longer than
individuals working independently (Parrott, 2009). Self-regulating patterns are rules, corrections, and
coordination of actions to provide predictability and meaning. In addition, rewards and punishments
are used to fortify expectations and norms for behaviors. The interdependent notions of interactive
complexity and punctuation put focus on the fact that individuals’ behaviors spur action and reactions;

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punctuation emphasizes that individuals perceive where the beginning of an action takes place, but
individuals often punctuate events differently. They thereby assign different meanings to the actions.
Openness underscores the idea that family members are affected by outside forces and influences. The
notion of complex relationships emphasizes that there are multiple subsystems within every family and
individuals are influenced by their personal experiences. Lastly, equifinality emphasizes that there is
often more than one answer, action, and/or way to reach the same conclusion or end state. In sum,
the systems perspective enables individuals to connect the symbolic forms of interaction that coalesce
to generate the family’s character, temperament, action, and reaction to the outside world. Pertinent
to this chapter, the family-as-a-system perspective provides a framework to describe and examine
family members’ health communication and experiences.
Social support is important for good health outcomes for sick family members and for family
members that manage chronic illnesses (Rosland et al., 2012). Specifically, higher levels of practical/
tangible (acts of service) and emotional social support that are perceived as significant, useful, and
beneficial are related to improved self-management behavior, improved disease control, and lower
mortality risk (Rosland et al., 2012). Furthermore, open, honest, and useful discussion about the
illness and the use of “we” language as opposed to “me” language is associated with better health
outcomes, improved survival risks, and improvement of patients’ symptoms. This is because it dem-
onstrates a reframing of the management of the illness as a family vs. an individual issue (Rohrbaugh
et al., 2008). Communication that uses active, problem-focused coping strategies and attentive
responses instead of avoidant strategies improves illness outcomes (Rosland et al., 2012). Social sup-
port that encourages and respects family members’ autonomy, self-reliance, competence, personal
achievement, strong family cohesion, and shared emotions leads to higher personal engagement in
health behaviors and improved health outcomes (Rosland et al., 2012).
Previous family communication research has suggested that family members are often the pri-
mary means of support for a cancer survivor and the terminally ill (Hilton, 1994; Keeley & Yingling,
2007) and are important for the survivor’s psychosocial adjustment and health-related quality of life
(Mitschke, 2008). Family caregiving experiences are dependent upon family dynamics, as well as
the family caregiver and the survivor’s unique health needs, stressors, and fears (Koenig Kellas et al.,
2017). Family caregivers are at increased health risk and reduced well-being because of the constant
and high degree of physical, mental, and emotional stress (CDC, 2020). Health risks for family car-
egivers include elevated levels of anxiety and depression and higher use of medication to treat them,
compromised immune functioning, self-reported poorer physical health, and risk of early death
(CDC, 2020). Furthermore, 27% of those caring for an adult family member reported moderate to
severe financial hardships resulting from their caregiving responsibilities (CDC, 2020).
Unmistakably, family caregivers are also in need of social support. Unfortunately, most fam-
ily caregivers have little opportunity to take advantage of formal support services to minimize the
negative health outcomes (NIH, 2020). As a consequence, family caregivers must improve their
communication within their family, friend, and support networks to find creative ways to decrease
their stress, increase their level of respite, share their burden with other family members, and amplify
their resources for providing healthcare for family members. Ironically, it usually is a lack of com-
munication about caregiving that leads to the assumption of who in the family becomes the pri-
mary caregiver (Willyard et al., 2008). This lack of communication at the onset and throughout
the caregiving period underscores the need for more communication and negotiation about the
roles and tasks of family caregiving within the larger family system. Communication that directly
addresses these factors decreases the levels of burnout and allows family members to distribute the
workload, thereby offsetting negative health outcomes. Thus, perhaps the most important resource
for combatting negative effects of informal caregiving within families is open and empathetic com-
munication about health and health decisions. This requires that all family members engage in such

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communication. It is not uncommon for some members of the family to refuse to do so even if the
person who has become the primary caregiver tries to initiate such communication (T. Thompson,
personal communication, July 29, 2020).
Alternatively, for many people, providing care for a family member with a debilitating condition
provokes feelings of fulfillment, strengthens relational ties, and provides valuable insight about one-
self and others (CDC, 2020). Benefits include increased experiences of togetherness, strengthening
of family ties, enhanced friendships, increased inner strength, and enhanced coping abilities (Stolz
et al., 2006). Whether the social support is perceived as beneficial or not, is sought or avoided, and
is offered or withheld is often dependent upon how the family system has socialized its members to
engage with and value social support.

Socialization of (Un)Healthy Behavior

Family members are forces of mutual influence whose communication and identities are reflexively
shaped over time. Families play critical roles as agents of socialization, facilitators of sensemaking,
and intimate sources of interpersonal influence. Socialization involves communication and repeated
actions demonstrated by close interpersonal others that teach individuals how to act and respond to
situations. Rules and norms of healthy and unhealthy behavior are routinely communicated about
during familial interactions, resulting in the indoctrination of health beliefs and behaviors for family
members (Hesse et al., 2017).
Several communication contexts are illuminated through the application of socialization per-
spectives, including family-level experiences with obesity (Moore et al., 2017) and substance
abuse (Kam & Perez Torres, 2018). Childhood obesity is particularly illustrative of the role family
plays in socializing members toward or away from disease. For example, ingrained family commu-
nication regarding food choice and consumption, in addition to communication about genetic
predispositions and physical activity, contributes to outcomes of adolescent weight status and life
course potential (Moore et al., 2017). Families also play important roles in the socialization of
issues related to substance abuse, including how families talk about substance use, modeling of
parental behavior, communication of reward and punishment, perceptions of message legitimacy,
and potential for inadvertently promoting the adverse continued use of alcohol and other drugs
(see discussion of inconsistent nurturing as control theory later). For instance, in Latinx families,
adolescents find anti-substance abuse messages most effective when they perceive their parents’
communication as legitimate (i.e., honest, open, and consistent between their words and actions;
Kam & Perez Torres, 2018). However, these messages are ineffective when adolescents view their
parent(s) as being hypocritical, such as when their parents’ actions are inconsistent with their
messages (Kam & Perez Torres, 2018). Thus, the consistency and/or inconsistency of actions
and messages are important considerations in matters pertaining to family responses and health
outcomes.
Le Poire’s (1995) inconsistent nurturing as control (INC) theory focuses on family members as
sources of interpersonal influence who are not aware of their use of inconsistent communication
(e.g., sporadic use of punishment and reward strategies). Families provide two communicative func-
tions: nurturing and control (Le Poire, 2006). Nurturing behaviors are the words and actions that
create a supportive, healthy, and caring environment that best enables progress and development
of family members. Control behaviors act to restrain negative behaviors and limit dysfunctional
relapses. Additionally, inconsistent communication is often a result of codependency within the
relationship. Specifically, the family nurturer enables bad behavior from the substance user because
of the nurturer’s unwitting desire to feel needed. This pattern of inconsistent nurturing within code-
pendent relationships results in increased risk for adverse behavioral outcomes in individuals who
depend upon an inconsistent nurturer (Le Poire, 1995).

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Inconsistent nurturing as control theory argues that nurturing and control message functions
often clash with each other, particularly when the afflicted family member acts impulsively, which
affects the well-being of the individual and collective family system. Family members inadvertently
and unintentionally encourage the substance abuse behaviors despite their good intentions to dis-
courage objectionable behavior; accordingly, using patterns of intermittent messages of control and
punishment increases the likelihood that the substance abuse will continue (Le Poire, 2006). Con-
sequently, while family members attempt to mitigate unfavorable health behaviors and outcomes,
they are unlikely to effectively maintain their beneficial control attempts over time (Duggan & Le
Poire, 2006).
Work emerging from the INC framework offers valuable perspective into well-intentioned but
ineffective communication patterns, explaining how familial socialization and control attempts may
result in the communication of inconsistent health messages. Specifically, parents’ communication
with their young adult children about binge drinking (i.e., excessive alcohol consumption), their
use of reinforcing behaviors (e.g., consuming alcohol together, purchasing alcohol for the child),
and punishment behaviors (e.g., expressing concern, provoking a sense of regret in the child) func-
tion in inconsistent ways after verbally labeling the child’s consumption as problematic (Glowacki,
2016). Siblings also send inconsistent messages by sending mixed messages of reinforcing behaviors
(e.g., drinking as a bonding activity, topic avoidance), punishing behaviors (e.g., confrontation),
intermittently communicating frustration about their inability to alter a sibling’s drinking behavior,
minimizing the severity of the behavior, and avoiding talk about their concerns (Glowacki, 2017).
Although INC theory was established to examine communicative patterns in the frame of sub-
stance abuse disorders (Le Poire, 1995), its theoretical scope has expanded to include taboo family
communication contexts such as sexual compulsion and addiction (Wright, 2011), depression (Dug-
gan & Le Poire, 2006), and mother/eating-disordered daughter dyads (Prescott & Le Poire, 2002).
The findings from this body of research suggest that consistent punitive communication about sub-
stance abuse that simultaneously reinforces alternative behavioral choices results in multiple positive
outcomes. Specifically, it reduces relapse rates, bolsters the afflicted partner’s sobriety, and decreases
the functional partner’s depression (Duggan & Le Poire, 2006). Just as family members play critical
roles in the socialization of healthy and unhealthy behaviors for each other, they are equally impor-
tant for helping family members make sense and create meaning about health concerns and topics.

Sensemaking and Family Health Narratives

Narrative theories take a meaning-centered approach to communication that examines the transmis-
sion of stories as meaningful sources of sensemaking (McAdams, 2006; see also Chapter 4, this vol-
ume). Narrative theories are concerned with analyzing the way individuals employ stories to make
sense of, develop, and socialize others about their identities, interpersonal relationships, and lived
experiences (Koenig Kellas & Trees, 2013). Narratives are important sources of sensemaking, as they
allow individuals to organize complex and multifaceted life events into clearer, digestible segments
of information situated within individual, relational, and cultural contexts. People cope by sharing
illness narratives following particularly challenging experiences of disease (Wittenberg-Lyles et al.,
2010) and during especially stressful periods to help them make sense of what is happening to them
(Koenig Kellas & Trees, 2013).
Communicated narrative sensemaking theory (CNSM; Koenig Kellas & Kranstuber Horstman,
2015) was introduced to dissect the phenomena of socialization and sensemaking between commu-
nicative partners. The main objective of CNSM was to shed light upon the content of stories, the
storytelling process, and outcomes of storytelling in order to consider how health and well-being are
shaped at both individual and relational levels (Koenig Kellas & Kranstuber Horstman, 2015). For
example, families tell narratives of shared difficult events as jointly enacted storytelling to help them

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make sense of the events and to understand each other’s perspective of their experiences, suggest-
ing that perspective taking is important to support and confirm the others’ perspectives and that it
increases the perception of feeling supported from family members (Krouse & Afifi, 2007).
Narrative coherence (i.e., similarity between narrative accounts) and perspective taking (i.e.,
acknowledgment and validation of a communication partners’ viewpoint) are particularly impor-
tant behaviors to foster productive sensemaking processes. They allow for the co-creation of shared
meaning and achievement of understanding between members of family systems (Horstman & Hol-
man, 2018). Numerous scholars have explored a variety of health contexts utilizing narrative analyses
to understand how families make sense of chronic health events. First, autism narratives are described
as powerful and transformative ways to allow family members to use discursive tactics that enable the
co-creation of forecasted futures and imagined goals and the discovery of aspirations (Manoogian
et al., 2010). Second, dementia narratives are valuable for family members as a way to connect with
individuals with dementia and to meet them where they are, as opposed to demanding that they
act in ways that are no longer possible for them (Johnson et al., 2017). Third, miscarriage narratives
shared by spouses are beneficial because they allow the spouses to better understand one another’s
perspective, thereby enhancing their ability to support each other individually regarding the parental
roles that are lost and to improve their relational well-being (Horstman & Holman, 2018).
Narratives of hope are inescapable and poignant forces within the experiences of many illness
trajectories (Koenig Kellas et al., 2017). Two types of hope are especially prominent in narratives of
health and family caregiving: particularized hope and generalized hope. Specifically, particularized
hope focuses on specific treatments for the illness or on experimental trials that may be available;
generalized hope emphasizes controlling pain, empowering the patient, and emphasizing the impor-
tance of the family and the patient’s physical, spiritual, and emotional needs. Thus, particularized
hope focuses primarily on maintaining optimistic narratives and fixation on curing illness, whereas
generalized hope balances competing tensions of hope and honesty, fosters acceptance, and focuses
on the wish for a good death (Koenig Kellas et al., 2017).
One concern about enduring expressions of particularized hope is that it may lead to mutual
pretense. Mutual pretense entails avoidant interaction patterns that are characterized by downplaying
or not acknowledging the severity of health status, thereby resulting in false hope within illness nar-
ratives (Goldsmith & Ragan, 2017). As such, mutual pretense can be a maladaptive communication
pattern that involves the coordination and modification of conversation between family members,
the patient, and medical professionals. Accordingly, engagement in mutual pretense maintains a false
and co-created façade of optimism for the future in terms of disease and treatment outcomes and
stymies authentic and honest communication among the participants when it is needed the most
(Koenig Kellas et al., 2017).
Unfortunately, there are several potentially negative aspects of prioritizing narratives of hope that
constrain the exchange of open and honest communication occurring between family members
about an individual’s health status. This restrictive communication may hinder a survivor’s or family
members’ ability to honestly acknowledge the reality of a patient’s illness status, creating denial and
giving false hope (Koenig Kellas et al., 2013), depriving family members of the opportunity to have
final conversations (Keeley, 2007), and stopping the terminally ill from revealing their true desires
for the management of their care and end-of-life decisions (Ragan & Goldsmith, 2008; see also
Chapter 9, this volume).
Although communicative avoidance may be situationally functional (i.e., dependent on specific
contextual factors; Magsamen-Conrad et al., 2015), it is generally healthier for survivors to dis-
cuss negative emotions as fears, anxieties, sadness, anger, and emotional distress (American Cancer
Society, 2016). There are some clear benefits from open communication during narratives about
illness; these include relational bonding and comfort (Keeley, 2007), communally oriented coping
and increased psychological and social adjustment (Magsamen-Conrad et al., 2015), and stress relief

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and catharsis (Goldsmith & Ragan, 2017). The recommendation of open communication regarding
health matters brings up the issue of where and how individuals learn to communicate about family
health issues. One major way that family members’ communication is shaped is through recurring
patterns of communication within the family.

Family Communication Patterns Concerning Wellness and Illness

Family wellness messages focus on diet, exercise, and healthy life behaviors (e.g., yearly checkups,
medical tests at the appropriate times). Family communication patterns that begin in childhood
continue throughout the teenage and adult years. Not surprisingly, family health communication
influences healthy diets and attitudes regarding healthy exercise habits (Baiocchi-Wagner & Talley,
2013; see also Chapter 11, this volume). The climate of the family health and wellness conversations,
either positive or negative, is based a great deal on family communication patterns (FCPs).
Family communication patterns theory (FCPT; Ritchie, 1991) focuses on the patterns of com-
munication within the family based on two orientations regarding conversation and conformity.
Conversation orientation refers to the amount that family members are encouraged to communicate
and participate in family interactions. Families with high conversation encourage a lot of openness
and frequent interactions, where family members are encouraged to talk freely about their thoughts,
emotions, and life experiences with one another. On the other hand, families with low conversa-
tion have minimal interactions, privacy is privileged, and sharing of thoughts and feelings is avoided.
Young adults in households that are low in conversation orientation tend not to disclose about their
health issues to their parents (Hays et al., 2017). Conformity orientation refers to the climate of the
family regarding their values, attitudes, and beliefs. Families with high conformity are cohesive, stress
obedience to parents and authority figures, are highly interdependent, and expect family members
to have a homogeneous perspective. Families high in conformity tend to be lower in conversation
(Hays et al., 2017), perhaps because of the expectation that children/young adults must be obedient
and respectful (i.e., not argue) with authority figures. Conversely, families with low conformity are
less cohesive and value independence, personal space, outside relationships, and personal interests.
The interaction between conversation and conformity explicates four family types: protective (high
conformity, low conversation), consensual (high conformity, high conversation), pluralistic (low
conformity, high conversation), and laissez-faire (low conformity, low conversation; for a detailed
review see Koerner & Fitzpatrick, 2002). FCPT is ideal for exploring family interactions in the
health context because these patterns are ingrained in all family members’ minds. They dictate the
norms and expectations regarding how much, how often, and what one does and does not talk
about. These enduring family communication patterns can be seen intergenerationally between
grandparents and grandchildren (Rauscher et al., 2020), as well as in conversations about wellness
and illness (Baiocchi-Wagner & Talley, 2013).
Consensual families are more likely to have positive and informing conversations about well-
ness behaviors that influence future healthy habits, in part because health activities are modeled
(Baiocchi-Wagner & Talley, 2013). These interactions are memorable teaching moments, as families
participate in the healthy activities together (Hall et al., 2016). Pluralistic families, however, often
have negative long-term consequences for their health because, although conversations may occur,
healthy behavior decisions are not made or enforced and indulgences are allowed (Hall et al., 2016).
Protective families feel lower levels of confirmation, criticism, and judgment in health conversations
(Baiocchi-Wagner & Talley, 2013). Additionally, high conformity appears to indirectly suppress
disclosure about health issues because conversations are limited and constrained (Hays et al., 2017).
Laissez-faire parents are the least likely to have any conversations about exercise and diet (Hall et al.,
2016). Overall, families that encourage open and more frequent communication usually have better
physical and mental health (Schrodt et al., 2008).

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Family illness messages focus on a wide range of health topics from acute to chronic health condi-
tions, as well as from mundane to life-threatening illnesses. For instance, families that communicate
frequently and in unrestricted ways share more about individuals’ health histories (Campbell-Salome
et al., 2019), genetic testing results (Rauscher et al., 2015), and ways to manage grief (Carmon et al.,
2010). Additionally, families that are high in conversation orientation are perceived to be more com-
petent communicators (Schrodt et al., 2008), make more health decisions together (Rauscher et al.,
2015), and, ultimately, are more satisfied and committed and more frequently follow care providers’
recommendations for treatment of illnesses (Koerner et al., 2010).
High conformity patterns have been associated with negative family health outcomes. As high
conformity orientation indicates compliance and deference to authority figures; individuals above
average in this orientation tend to distrust their own ability to make decisions (Koerner & Fitzpat-
rick, 2002), are less involved in their care (Koesten, 2004), and are less willing to communicate
openly about their health histories (Campbell-Salome et al., 2019). Hesse et al. (2017) extended
FCPT by dividing the construct of conformity into two types: cold and warm conformity. Cold
conformity is consistent with the original conceptualization. Families with this communication pat-
tern have high levels of interdependence, as well as considerable amounts of influence and control
over each other. Warm conformity still focuses on sustaining the rules and maintaining consistent
family values, beliefs, and discipline, but it also encourages openness and embraces family closeness
(Hesse et al., 2017). The balance of rules and boundaries with warmth, closeness, and openness
reduces the negative consequences of conformity on children’s well-being (Hesse et al., 2017).
Thus, the use of a warm conformity orientation in the family (i.e., a more positive, authoritative
emphasis) has the potential to empower individuals to become more involved in their own health-
care decision-making, enhancing shared power and shared responsibility for both health actions and
outcomes (Rauscher et al., 2020). Family communication patterns potentially affect how resilient
family members are during health crises because of the automatic nature of ingrained patterns of
behavior. Additionally, family communication patterns involving authentic communication during
stressful times build resilience and makes families stronger and better able to adapt to the turbulence
experienced throughout various acute and chronic illness trajectories (Donovan-Kicken, 2012).

Resilience in the Family

All families experience stress resulting from the management of both mundane and major life
events that range in terms of severity and duration. When everyday life or specific tasks become
overwhelming, family systems are taxed, and the management of interpersonal relationships may
become increasingly difficult. Thus, relational partners, including family members, must exert effort
to routinely invest in maintaining their relationships over time. Prosocial relationship investments
(e.g., using strategies of task sharing, positivity, assurances, openness, and social networks to main-
tain a relationship), also known as relationship maintenance behaviors, benefit across relational tra-
jectories as they contribute to fostering perceptions of relational resilience. Resilience has been
defined as positive behavioral and psychosocial adaption when individuals face substantial life dif-
ficulties (Luthar, 2003) or the ability to reclaim a sense of stability during adverse or stressful periods
(Ardnt & Parker, 2016).
Family stressors are powerful in their ability to shape family communication and relationships.
These stressors are experienced in the form of normative, nonnormative, and unpredictable stressors,
and each stressor prompts its own unique challenges for family systems (see Segrin & Flora, 2011).
Transitionary stages throughout the lifecycle are normative family stressors such as childbirth, experienc-
ing hormone changes and accompanying behavioral changes at puberty and menopause, physical and
mental changes with old age, and death of the elderly. Nonnormative family stressors often include
experiences such as miscarriages, premature births, acute and/or chronic illnesses, or unexpected,

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early deaths. It is important to note that although all families experience life stress, families may not
experience similar stressors or resilient outcomes in analogous ways.
Resiliency influences how individuals experience daily life, band together to promote communal
coping, provide mutual and reciprocal help, and connect with others in substantial and transforma-
tive ways (Arndt & Parker, 2016). In small groups such as families, resilience is considered to be ideal
when bouncing back from adversity in ways that support thriving (i.e., expanding personal perspec-
tives, bolstering coping efficacy, learning new lessons, growing social relationships after a stressful
experience; Afifi et al., 2019). The theory of resilience and relational load (TRRL) was introduced
to explore the co-occurrence of stress and resilience within close relationships (see Afifi et al., 2016).
The theory identifies stressful experiences as stemming from several sources, including major life
events, daily struggles, health challenges, or a cascade of events, all of which may be acute or chronic
in nature. TRRL conceptualizes investments as the socially acceptable, intentionally planned, and
routine actions that individuals use to sustain and support their relationships. The theory asserts that
because all families experience stress, individuals must continuously invest in their relationships to
maintain them and foster outcomes of resilience. However, if relationships are lacking investment
resources, the experience of stress may hamper people’s abilities to collectively cope. This concur-
rently threatens personal and relational health.
TRRL focuses on the key variables of relational load and emotional capital (Afifi et al., 2016).
Relational load is the depletion of investment resources over time that leaves individuals susceptible
to poor mental, physical, and relational health. Emotional capital includes the relational investments
of positive communication that allow relationships to withstand emotional stressors. Thus, as the
positive perception of relational maintenance and available emotional capital increases, the degree
to which individuals will appraise a stressor as negative decreases (resulting in security vs. threat
appraisal) and the more likely the family will benefit from prosocial communication. This bolsters
relational functioning over time (Afifi et al., 2016).
Resilience is an important component of family health communication experiences. For exam-
ple, childhood adversity has been related to an increased likelihood of risk for physical and psycho-
social health conditions later in life (Luecken et al., 2013). Families are encouraged to engage with
their children with autism by sharing realistically optimistic narratives about life experiences and
imagined futures to increase resiliency (Sirota, 2010). Further, early interventions and appropriate
socialization regarding medical and technological devices benefit individuals who are hearing or
visually impaired in adapting to adverse situations or stressors (Arndt & Parker, 2016).
The novel COVID-19 pandemic of 2020 offers a contemporary example of how patterns of
resilience within families can offset unexpected and high levels of stress. Communication is an espe-
cially meaningful mechanism for managing stress and healing during periods of crisis. For instance,
the pandemic has disrupted the status quo of everyday life in unprecedented ways; thus, families
are encouraged to talk about their stressors (e.g., concern over personal sanitation behaviors, social
isolation practices, genetic predisposition for illness) to increase coping (Venetis, 2020). In the wake
of COVID-19, Venetis (2020) recommends several things that people may do to increase their
resilience, happiness, and health. To begin with, family members may discuss ways to maintain or
develop a new sense of normalcy in their everyday lives. They may also embrace optimistic perspec-
tives and use humor whenever possible. Finally, it is best if individuals recognize that the situation is
temporary and is survived together more easily by maintaining their communication networks. In
this context, TRRL is a lens for understanding how families collectively cope with local and global
stressors that contribute to their health and daily life functioning.
During times of high stress created by health crises, family members may be asked to make
life and death decisions that are complicated by issues pertaining to morality. Morality is often
not a clear-cut judgment and is frequently assessed based on individuals’ experiences within
their family, cultural, religious, and belief systems. Additionally, not all family members have

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homogeneous opinions about what is moral or immoral within the complicated and often mys-
terious healthcare context.

Moral Dilemmas in the Family Concerning Health/Medical Decisions

Morality is the assessment of what is right or wrong, good or bad, as well as an evaluation regarding
whether individuals are virtuous (Waldron et al., 2014). The family is the first and, in many ways,
the most important and long-lasting context for shaping children’s morality and developing a clear
set of values (Waldron & Kelley, 2017). Parents model good and bad behavior, as well as participating
in important and memorable conversations across the lifespan (Waldron et al., 2014). Siblings often
act as sounding boards for making important decisions in multiple contexts, but especially within
the health context (Waldron & Kelley, 2017). These include decisions about their aging parents in
terms of taking away car keys, selecting housing options, determining treatment for illnesses, and/
or making end-of-life decisions (Fisher & Wolfe, 2015). Additionally, peers, educators, religious
leaders, work associates, and individuals with expertise and high regard (e.g., doctors and other
respected health professionals) influence moral values and beliefs (Waldron & Kelley, 2017). These
moral negotiations are also reciprocal, insomuch as children and grandchildren influence their elders
across their lifespans (Waldron & Kelley, 2015).
A communication theory that considers the family, health, and morality is the negotiated moral-
ity theory (NMT; Waldron & Kelley, 2008, 2017). This theory provides a pathway for exploring
how family members negotiate ethical topics that are characteristically a part of daily, lifelong,
acute, and chronic health behaviors. NMT is meant to be used as a framework for understand-
ing interpretive data, to explain how it is through communication that individuals come to create,
maintain, assess, and even change their values, beliefs, and actions (see Waldron & Kelley, 2017 for
more details). The authors assert that many, if not most, decisions made within the family have a
moral foundation guiding the thoughts and actions of the family member. These moral foundations
are first created in the family and continue to be honed throughout individuals’ lifetimes through
talk with family members, interactions with peers, and life experiences. Ultimately, families’ moral
messages should make it possible for individuals to create lasting, practical, healthy, and beneficial
decisions for themselves and for their families.
In the rapidly changing world of medicine, there are numerous decisions that family members
must make across a lifetime. Some of the health issues that are intricately tied to moral decisions
begin with conception (Mucciaroni et al., 2019) and end with death, including the right to die with
dignity (Pullman, 2004) and the prevention of suicide (Yamplosky & Kushner, 2020). Everyday
regimens are also frequently enmeshed with moral standards around wellness and illness behaviors.
For instance, healthy activities (e.g., moderation in food and alcohol use, regular exercise, wearing a
helmet while riding a bike) vs. harmful or detrimental actions (e. g., obesity, social drug use, a refusal
to take medication as it is prescribed) are often talked about through a moral lens (Parrott, 2009).
Additionally, sexual attitudes and behaviors (e.g., premarital, extramarital, and/or homosexual sex or
the use of pornography) have long been interrelated with discussions within the context of family,
health, religion, and culture (Baker et al., 2020).
The advances in genetic testing along with the widespread availability of home testing kits (e.g.,
Ancestry.com, 23 & Me) also present ethical discussions that family members and medical person-
nel need to consider. For example, although in utero testing can be used to determine serious
birth defects to inform parental decisions about termination, it also can be used to determine the
sex of the child, which can inform decisions about terminations in some cultures. Other ethical
considerations include privacy issues, such as what and how much information should be disclosed
to potentially affected kin and/or misuse of medical information by employers or insurance com-
panies (Rabino, 2003). The COVID-19 pandemic highlights moral decisions that individuals must

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make, such as choosing to wear masks and socially distance in public or going out with friends
and potentially endangering their family members in high-risk health groups. Similarly, if hospitals
experience a shortage of critical care beds and equipment, doctors must choose which patients have
the best chance to live and therefore are admitted for care and which individuals are sent home
to die. Healthcare professionals and families of terminally ill patients often face difficult treatment
decisions that provoke concerns about preserving the quantity vs. the quality of life (Fisher & Wolf,
2015). These examples demonstrate that medical science is racing ahead with discoveries that could
be considered positive or negative depending upon individuals’ moral assessments of the various
phenomena.
Family members need to participate in these discussions about health issues to make reasonable
and ethical decisions about them or else they will be made for them by health professionals and/or
public policy (Parrott, 2009). Unmistakably, negotiations about issues pertaining to health, family,
and morality will continue to be an important area of study for decades to come. It is vitally impor-
tant to be aware that the family context is often the first and last place of confrontation and discussion
concerning health, morality, and everyday living (Parrott, 2009). In the end, NMT’s focus on the
communication process of these negotiations highlights the lifelong importance of morality talk on
family health discussions and explains how these discussions affect and reshape familial relationships.

Future Directions and Conclusion

As researchers, we have a responsibility to diversify and disrupt the overwhelmingly white heter-
onormative focus of family communication about health. Research occurring at the intersections
of health and family must consider the prevalence and importance of incorporating technology-
and computer-mediated communication into diagnosis, treatment, and scholarship. The surge in
telemedicine appointments from challenges evoked by the COVID-19 pandemic is reshaping the
way individuals engage in healthcare. Family practice doctors need to have discussions about many
sensitive topics via technology. Paradoxically, the telehealth appointments are giving doctors the
flexibility to have more in-depth conversations with their patients as they work to develop con-
nections with their patients and their families through Zoom or other similar methods (National
Cancer Institute, 2020). Although telehealth is not likely to replace face-to-face doctor visits, it adds
an important and useful tool for family practice doctors and their patients (National Cancer Insti-
tute, 2020). It will be fascinating for family health communication scholars to examine how doctors
develop credibility, rapport, trust, and interpersonal warmth with their patients and family members
over screens as opposed to face-to-face interactions. Many doctors struggle with how to develop
honest conversations about difficult topics and strive to get their patients to honestly reveal habits
negatively affecting their health, as well as grappling with ways to get their patients to regularly take
their medication and adhere to their medical advice.
Future research needs to take into consideration socioeconomic, regional, and cultural factors to
create a comprehensive view of social determinants of health (e.g., education, finances, healthcare,
built environments, social and community contexts) that affect families (Healthy People, 2020). For
example, a current program called NETWORX Health (Villagran, 2020) connects disadvantaged
mothers and babies with free and low-cost health-sustaining resources in their local county (see
https://www.facebook.com/NetworxHealthHays/). This type of evidenced-based, translational
health and family research is critical because it meets the family in their homes and communities. It
brings the information to the community in nonthreatening and approachable ways, thereby sharing
control and responsibility for wellness and illness with families.
Upon completion of this review of literature of the family health context, we are more convinced
than ever of the vital importance of recognizing the family as an essential component of the health
trajectory. Individuals do not experience wellness and illness in isolation, and for most people it is

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their family members who accompany them throughout their life journey. This view foregrounds
the essential role of family rather than treating family as a force operating in the background of
decision-making and communication about health. Highlighting the importance of family com-
munication is consistent with the current trend of being more patient centered (Wittenberg et al.,
2017), thereby empowering the patient and their family to share responsibility, engage in open com-
munication, and take an active role in managing their treatments and outcomes.

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PALLIATIVE CARE AND END-
OF-LIFE COMMUNICATION
Elaine Wittenberg and Joy V. Goldsmith

In the winter of 2013, at age 47, Malvin Summers was experiencing frequent urination
and some difficulty maintaining erections. He assumed this was an age-related symp-
tom and ignored it for a few months. But in the spring of 2014, his partner, Darius,
decided they would check with a urologist about his complaints. At that time they lived
in Detroit. The urologist, Dr. Diaz, checked Malvin’s prostate specific antigen (PSA)
and found it was highly elevated. His last test, nearly two years before, had been normal.
Dr. Diaz referred Malvin to an oncologist for further testing and treatment, suspecting cancer.

Dr. Martinez, Malvin’s oncologist, confirmed the diagnosis of prostate cancer and ordered
a battery of tests (full body bone scan, positron emission tomography, blood tests, physical
exams) to determine a diagnosis. A week after the completion of the tests Malvin and
Darius had heard nothing.

Malvin and Darius transport us to the lived experience of the patient and caregiver, which is vital to
the work of palliative and end-of-life communication research. Their stories are shared throughout
this chapter to illustrate communication in palliative care, which is specific to acute, chronic, and
terminal illness. The role of communication in palliative care is a central clinical practice, making
communication a vital area of study. The COMFORT model is a communication studies–specific
approach to clinical communication and serves as the core theoretical structure of the chapter. The
model itself leads us to identify barriers in communication for stakeholders in the palliative care pro-
cess. The COMFORT model includes a pathway to increasing health literacy and addressing health
inequities. In our description of the model, we include exemplar publications that demonstrate
the range of research types (basic: advancement of knowledge, applied: solution to a problem, and
translational: install knowledge directly into practice) and paradigms (critical, interpretive, scientific)
correlated with each component of COMFORT. Finally, we explore a range of challenging issues
ripe for research in palliative and end-of-life care in the decade to come.

Understanding Palliative Care

Palliative care should not be conflated with hospice care, although we see that this continues to
happen—most especially with clinicians and patients/families. In actuality, hospice care is a specific

DOI: 10.4324/9781003043379-11  119

 Elaine Wittenberg and Joy V. Goldsmith

kind of palliative care. Palliative care concentrates on relieving suffering and improving quality of
life; patients are not included or excluded because of their diagnosis or prognosis. Palliative care
permits patients to receive curative, life-prolonging treatment simultaneously with receiving care
that enhances quality of life. It is holistic care that treats the whole person—not merely the dis-
ease—and involves both curative medical care by physicians, nurses, and other healthcare providers
and also emotional, psychological, and spiritual care by a team of specialists including social work-
ers, psychologists, and chaplains. In palliative care the goal is not to cure, hasten, or postpone death
(Bennardi et al., 2020); rather, the focus is on achieving the highest and most desirable quality of
life while being ill.
This classification of care focuses on expert assessment and management of pain and other symp-
toms, assessment and support of caregiver needs, and coordination of care. It is a person- and family-
centered approach to care, and with early integration into the care plan for the seriously ill, palliative
care improves quality of life for the patient and family. Palliative care is appropriate at any stage in a
serious illness, is offered across time to patients based on their needs and not on prognosis, and can
be delivered in all care settings and organizations (i.e., physician practices, health systems, cancer
centers, dialysis units, home health agencies, hospices, and long-term care facilities); palliative care
is meant to privilege what is most important to the patient, family, and caregiver(s) and finds a path
to achieve it (National Consensus Project for Quality Palliative Care, 2018). Palliative care principles
and practices can be delivered by any clinician caring for the seriously ill and in any setting—which
leaves a great deal of space and work for communication researchers. All clinicians are encouraged
to acquire core communication skills and knowledge regarding palliative care and refer to palliative
care specialists as needed (Ferrell et al., 2018).
Hospice care is a subset of palliative care for individuals with a terminal diagnosis (defined in the
United States as having six months or less to live; Wittenberg et al., 2020). It is provided to both
the patient and family and includes attention to the physical, psychological, spiritual, and emotional
needs of the dying. It is provided in many settings: home, nursing home, assisted living facility, or
inpatient hospital. Although the U.S. Medicare Hospice Benefit affords terminally ill patients six
months of hospice care, most patients use hospice care for fewer than 24 days (National Hospice and
Palliative Care Organization, 2019).
Both palliative and hospice care include end-of-life communication. Whereas hospice care
introduces end-of-life communication only at the end of the patient’s life/illness journey, pallia-
tive care introduces discussions about illness from initial diagnosis. Ideally, when palliative care is
implemented at diagnosis, decision-making conversations at end of life will be far less common
(Anderson et al., 2019). The patient’s wishes will have been discussed, and care decisions guided
by patient preferences and priorities will be at play. To enable this, communication about pal-
liative care should include information about the diagnosis/condition and care options, family
involvement in decision-making, and use of plain language to facilitate understanding (Bennardi
et al., 2020).

Communicating About Palliative Care With Patients and Families

Approximately half of the communication between palliative care providers, patients, and families
involves information about the availability, elements, and benefits of palliative care (Albizu-Rivera
et al., 2016). The task of discussing palliative care remains a complex endeavor, even for skilled
palliative care providers (Collins et al., 2018). Discussions can be difficult when the patient has
not accepted the prognosis, the patient asks how much time is left, and no relationship exists
between provider and caregiver (Clayton et al., 2019). Among physicians, there is concern that
introducing palliative care will interfere with treatment focused on extending life. Others believe

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that a palliative care specialist is not needed to provide good palliative care (Perrin & Kazanowski,
2015). Moreover, inconsistent language has been used to define and explain palliative care, creat-
ing patient and family uncertainty about including palliative care during cancer care (Hui et al.,
2012). Published research has used 16 different palliative care definitions (Hui et al., 2012), adding
to confusion.
There are delays in introducing palliative care to the patient and family when the palliative care
team and physician disagree on the plan of care. Patients and families receive mixed messages about
the appropriate course of treatment, facing the choice of allegiance to the primary care physician/
oncologist or working with “new” palliative care providers. Patients and families introduced to
palliative care late in the illness course interpret it as end-of-life care or hospice (Partridge et al.,
2014), rather than integrated care appropriate from the time of diagnosis. Especially in oncology,
palliative care is thus seen as an “either/or” option; the patient and family feel they must choose
either disease-modifying treatment or palliative care (Meier et al., 2015). Dependency on physician
referral, inconsistent use of language about palliative care, disagreements between the physician
and palliative care team, and the introduction of palliative care late in disease stage contribute to its
underutilization.
Patient, family, and provider communication is critical to a palliative care approach. Palliative
care communication involves engaging in responsive communication about diagnosis, discussing
factors influencing treatment decision-making, relaying and mediating communication among fam-
ily members, and providing psychosocial counseling about difficult topics. Palliative care improves
communication with patients and families by (a) clarifying goals of care, (b) helping to select treat-
ment and care settings that meet their goals, and (c) assisting with decisions to leave the hospital or
withhold or withdraw death-prolonging treatment that does not align with the patient’s end-of-life
goals. The biggest barriers to palliative care delivery include provider lack of skills or confidence,
communication with palliative care services and other professionals, and communication with the
patient and family about palliative care issues (Carey et al., 2019). Communication challenges affect
healthcare utilization and are associated with deferred treatment and delays in end-of-life care (Ben-
nardi et al., 2020). With so many communication challenges to examine and improve, we feature
the COMFORT communication model here as a theory-driven resource for palliative care com-
munication research.

The COMFORT Communication Model

Originally introduced in 2013 for nurses (Wittenberg-Lyles et al., 2013), the COMFORT com-
munication model is not a linear guide, an algorithm, a protocol, or a rubric for sequential
implementation by only nurses; rather, it is a set of holistic principles that can be practiced by
all healthcare providers during patient/family care across the entire illness journey, not just at
the point of terminal care. COMFORT consists of seven basic communication principles: C—
Connect, O—Options, M—Making Meaning, F—Family Caregivers, O—Openings, R—Relat-
ing, and T—Team (Wittenberg, Goldsmith, Ragan, et al., 2020). During the last five years,
the COMFORT model has been taught nationwide to healthcare providers who integrated the
curriculum and concepts into their own institutions and, through a train-the-trainer approach,
delivered components of the model to more than 10,000 healthcare providers across the United
States (Wittenberg, Goldsmith, Ferrell, et al., 2020). In the following section we present the
seven COMFORT principles (see Table 9.1), interlaced with the narratives of Malvin and Darius,
and include tables presenting samples of published work that demonstrate a range of research
paradigms reflected in current health communication research coinciding with COMFORT
principles.

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 Elaine Wittenberg and Joy V. Goldsmith

Table 9.1 Overview of the COMFORT Communication Model

COMFORT Model Theoretical Grounding/Topics Applied Practice

C—Connect • Sharing Difficult Connect to the patient/family story.

Information With Patient/ Providers have an essential role in the delivery of
Family difficult news. Listening to patient and family
• Narrative Clinical Practice concerns and capturing important information
• Person-Centered Messages about what they value builds trust. Encouraging
storytelling is one way to connect and share
messages.
O—Options • Health Literacy Share options.
• Cultural Humility Patients and their caregivers are unique, and
• Communication doctors and nurses should not assume
Accommodation preferences based on patients’ appearance,
ethnicity, or origin. Providers should
recognize that simply providing information
does not always equal understanding. Patient
and caregiver health literacy is created from
interaction between providers, systems, and
communities.
M—Making • Meaning of Suffering Make meaning of suffering.
Meaning • Mindfulness Patients, families, and colleagues can endure
• Relational Listening great suffering if they can find meaning in that
• Spirituality suffering. Patients and families relate serious illness
and end of life to ways in which this will affect
their relationships and day-to-day living. Healing
and compassionate presence involve deep listening
to share emotions and respond with compassion.
F—Family • Patient- and Family- Recognize that family caregivers are partners.
Caregivers Centered Care A key role of providers is to be adaptable and
• Family Caregiver flexible to the diverse decision-making structures
Communication Types that exist within families. Providers become like
• Family Meetings family when family cannot be there.
O—Openings • Communication Privacy Open conversations about feelings and fears
Management and goals.
• Introducing Palliative Care Intimate conversations that facilitate openings
to Patient/Family can profoundly and positively impact
patient suffering and fear. Patients may fear
discrimination and feel threatened because of
their marginalized status in the United States
or due to their cultural, religious, or linguistic
practices and values.
R—Relating • Uncertainty Reduction Relate to the uncertainty of this shared
Theory experience.
• Goals of Care Conversations The provider cannot know the reactions or
• Sexual Health, Hope perspectives of the patient/family without first
receiving and listening to them. Accept that not
all patients or family members will be able to
process news or make decisions. Truly relating to
a patient and their family creates the opportunity
to learn about fears associated with uncertainty.

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COMFORT Model Theoretical Grounding/Topics Applied Practice

T—Team • Interdisciplinary Team up with colleagues.
Collaboration Being flexible with roles and responsibilities
• Interprofessional Practice in the team environment demonstrates trust
• Groupthink and respect for professional colleagues. It is
important for healthcare providers to let team
members know what is working for them and
share their feelings about the experiences with
other team members. It is also very important
to share thoughts about other team members’
strengths.

C—Connect
MALVIN: From my standpoint it was all very confusing, and I didn’t have the information I needed.
We were left to do a lot for the research on our own. The whole process of diagnosis took about
three months from the time I first went to the doctor having symptoms. I just thought I was
having typical problems a man of my age might have. As it turns out it was an enlarged prostate,
and we eventually found out that there was cancer there.
DARIUS: Malvin went in for a physical and that’s when we found the elevated PSA and then thought
it was a bladder infection. We were sent to a urologist. We had to wait for a preferred provider,
which added time to our wait. They first treated him for a urinary tract infection. Once the PSA
came in they began pursuing a cancer diagnosis. And the urologist’s bedside manner was horrible.
MALVIN: He was rough and brash and very blunt and not very tactful and he was rough with his
physical handling. He was very blunt and without a lot of information in his conversations with
us. In fact after the biopsy he said check back in what, three or four days. Something like that.
Check back, you should have information in three or four days. If not, contact us. Well, we
waited. Longer than a week and did not have information and we called and he didn’t seem
to be able to find any information. So we finally just decided one day to go into his office and
plunk ourselves down until we were able to find out what the results were of that biopsy. We
took over one of the examination rooms until they were able to track down this doctor and have
him come in to meet with us to give us the diagnosis.
DARIUS: It was stage IV metastatic, I mean very bad. But they were not responsive. They were not
timely with us.
MALVIN: It was almost like he would rather send a letter or have one of his nurses tell us. It was
almost like he was uncomfortable and didn’t want to meet with us himself.

To connect is to achieve shared understanding in communication. Patients and families facing seri-
ous, chronic, or terminal illness have a story to share (Wittenberg et al., 2017). They desire a connec-
tion with their healthcare provider and need to be understood, especially in terms of the challenges
in their illness journey. Learning to listen deeply to patient/family stories and capture important
information about what they value can lead to connecting with the patient/family. Encouraging
storytelling, listening to quality-of-life issues, and practicing person-centered communication are
cornerstones of communication in palliative care. These principles work together to accomplish nar-
rative clinical practice. Core to this principle are the two tethered communication axioms: relational

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Table 9.2 Research Reflecting the Connect Principle of COMFORT

Published Work Type of Research Paradigmatic

Perspective

Alshammari, M., Duff, J., & Guilhermino, M. Translational Critical

(2019). Barriers to nurse-patient communication
in Saudi-Arabia—an integrative review. BMC
Nursing, 18(61).
Raftery, C., Lewis, E., & Cardona, M. (2020). Basic Interpretive
The crucial role of nurses and social workers in
initiating end-of-life communication to reduce
overtreatment in the midst of the COVID-19
pandemic. Gerontology, 66(5), 427-430.
Brock, K. E., Tracewski, M., Allen, K. E., Klick, J., Applied Scientific
Petrillo, T., & Hebbar, K. B. (2019). Simulation-
based palliative care communication for pediatric
critical care fellows. American Journal of Hospice
and Palliative Care, 36(9), 820-830.

communication (basis of trust, built upon nonverbal acts, essential for productive communication
exchanges) and task communication (instrumental actions, completion of list, achieving and accom-
plishing, built upon verbal speech acts). Malvin and Darius describe deficits in both relational and
task communication in their efforts to wrest a diagnosis.

O—Options
DARIUS: The thing they never really did was interpret, sit, and talk to us. We did get something
written that shows abnormal increase in multiple areas, including the right scapula, multiple
posterior, and anterior ribs, multiple levels in the lumbar spine, the right wing and the left iliac.
MALVIN: So, no one yet has interpreted the bone scans we got. The pathologist that did the initial
testing told us that his recommendation was to do everything now, everything you could pos-
sibly think of, prostatectomy, radiation, castration, whatever, but do it all, do it now, and do it
quick.
DARIUS: And we tried to get someone to consider doing, you know, the removal of the prostate and
nobody would. They all said that it’s moved out of the prostate, once it’s metastasized, and that
it’s a waste of time and money.
MALVIN: Dr. Brown believed in “triple blockade.” Actually more than triple. So the theory was
quality of life, but what happens and what is ultimately the problem is at some point the cancer
mutates and the hormones quit working. And once that happens, there’s really minimal second-
ary level of care. And so, you can always do local radiation, but then you would be destroying
bone. So that, um, once the hormones quit working there are some clinical trials but a lot of
them add only a month or two to life expectancy. And so, there’s really not the next thing to
do. So I decided to start on Lupron and Accutane, which were both highly experimental. I did
that for three months.

Malvin and his partner exhibit a high level of health literacy and knowledge. But knowing the words
and the information is only a part of health literacy. Patient and caregiver health literacy is co-created
between providers, systems, and communities (Wittenberg et al., 2020). This approach to health

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Table 9.3 Research Reflecting the Options Principle of COMFORT

Published Work Type of Research Paradigmatic

Perspective

Sprik, P., & Gentile, D. (2020). Cultural humility: A way Translational Critical
to reduce LGBTQ health disparities at the end of life.
American Journal of Hospice and Palliative Care, 37(6),
404–408.
Epstein, A. S., Desai, A. V., Bernal, C., Romano, D., Wan, Applied Interpretive
P. J., Okpako, M., Anderson, K., Chow, K., Kramer, D.,
Calderon, C., Klimek, V. V., Rawlins-Duell, R., Reidy,
D. L., Goldberg, J. I., Cruz, E., & Nelson, J. E. (2019).
Giving voice to patient values throughout cancer: A novel
nurse-led intervention. Journal of Pain and Symptom
Management, 58(1), 72–79.
Wittenberg, E., Goldsmith, J. V., & Kerr, A. M. (2019). Basic Scientific
Variation in health literacy among family caregiver
communication types. PsychoOncology, 28(11), 2181–2187.

literacy moves from an information-based focus on health education with patients to the realiza-
tion that knowledge does not equate with understanding and, importantly, understanding does not
equate with behavior. In palliative care, patients’ and families’ learning needs span the continuum of
care (Christensen, 2017), and inadequate knowledge and understanding of palliative care can be a
barrier to access (Chou et al., 2016).
Options are provisions of care that a clinician can provide, primarily through successfully created
and shared messages. Patient and family culture, tradition, and understanding of illness are core to
really internalizing the options of care. Cultural and linguistic preferences cannot and should not
be essentialized or assumed based on appearance, ethnicity, origin, or other individualized variables.
The ability to recognize patients and family members with low health literacy is an important part of
delivering patient-centered communication (see Chapter 20, this volume). Barriers to health literacy
include the patient’s physical and emotional states, prior healthcare experiences, and fear of asking
questions (Christensen, 2017). Moreover, a person’s ability to process information and retain it is
affected by the setting in which information is exchanged.

M—Making Meaning
DARIUS: Stage IV cancer is immediate, and the expectation of the outcome is quick, and the prog-
nosis is very broad, and they just don’t know and that’s where we don’t know either. We just
continue on with our lives . . . continue to that now, except now I think, there is more worry
because three years have gone by. We are trying to remain very confident, but the clock is tick-
ing louder.
MALVIN: I don’t know if I feel that way. Because you know, I haven’t felt any pain, and we can watch
the PSA go down, and know why it goes down and we can make it go down.
DARIUS: But at some point it won’t go down.
MALVIN: Well, right. But I haven’t had any pain and if the bone scan doesn’t have new spots, I’m
just going to figure things are going the way they’re supposed to. Until I start feeling bad and
having pain, or seeing those external indications, I’m not too concerned about how long it’s
been. I hadn’t thought about how long it’s been until it was brought up here.

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Table 9.4 Research Reflecting the Making Meaning Principle of COMFORT

Published Work Type of Research Paradigmatic

Perspective

Angelo, J., & Egan, R. (2014). Family caregivers Applied Critical

voice their needs: A Photovoice study. Palliative
and Supportive Care, 12(3), 701–712.
Kopelson, K. (2019). Dying virtues: Medical Basic Interpretive
doctors’ epideictic rhetoric of how to
die. Rhetoric of Health & Medicine, 2(3), 259–290.
Gerhart, J., Gerhart, J., O’Mahony, S., Translational Scientific
Abrams, J., Grosse, M., Greene, M., & Levy,
M. (2016). A pilot test of mindfulness-based
communication training to enhance resilience in
palliative care professionals. Journal of Contextual
Behavioral Science, 5(2), 89–96.

The existential matter of getting worse and no longer living is the topic under the surface in the
previous dialogue between our partners. Faced with an interaction about either no longer living or
anything else, most providers would opt for a discussion about treatment plans, clinical trials, the
weather—anything but dying and death. In addition, providers have far more preparation for discus-
sions of medical topics than end of life. The most comfortable topics of discussion among providers
continue to be symptom management (Clayton et al., 2019).
Making meaning is predicated on the notion that helping patients and families make meaning
of their suffering is a valuable contribution that palliative care providers can make. Mishler (1984)
explains this best as the voice of the lifeworld of the patient/family juxtaposed with the voice of
medicine. Presence is that quality of being there for the patient or family member, either physically
or psychologically, or both, and being nonjudgmental, unscripted, and spontaneous. Thus, a mind-
ful presence means that the provider is totally dedicated to the circumstances of the here and now,
regardless of what has gone before or what is predicted to follow. It is a valuing of “being” over
“doing,” in the belief that compassionately bearing witness to a patient’s/family’s suffering may be
the greatest gift a provider can offer.

F—Family Caregiver
DARIUS: I don’t think we’ve consulted them [adult children from previous marriages of both Darius
and Malvin] or asked their feelings or thoughts or opinions. Uh, we talked to Whitney and
Tyler two or three times about where things stood . . . I don’t think other than informing
D’Shae and Angie in the beginning we have talked that much. And Angie’s the one who found
our last doctor for us. So I don’t know, I think what’s happened is that she’s gotten much busier
at work. And then she tried to get pregnant and miscarried. And so, you know, I think their
life . . . and Tyler has two little kids.
MALVIN: Yeah, they’ve got their own lives. Plus, they don’t really see any physical change in me.
I don’t seem any different from when they were younger living at home.

Families have established communication patterns that transfer right into the context of illness, and
those patterns shape and impact the burden of communication and caregiving for the patient. Cli-
nicians are communication facilitators, educating the patient/family about illness and procedures,

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Table 9.5 Research Reflecting the Family Caregiver Principle of COMFORT

Published Work Type of Research Paradigmatic

Perspective

Koch, A., & Grier, K. (2020). Communication and cultural Applied Critical
sensitivity for families and children with life-limiting diseases.
Journal of Hospice and Palliative Nursing, 22(4), 270–275.
Rogetz, J., Rosenberg, A., Curtis, R., & Creutzfeldt, C. (2019). Applied Interpretive
Applying an adaptive communication approach to medical
decision making. Journal of Pain and Symptom Management, 59(1),
E4-E7.
Wittenberg, E., Kerr, A., & Goldsmith, J. (2020). Exploring family Basic Scientific
caregiver communication difficulties and caregiver quality of life.
American Journal of Hospice and Palliative Medicine, 38(2), 147–153.

challenging family members to consider the consequences of treatment, and encouraging awareness
about a patient’s decline over time. Recognizing that family is significantly impacted when a loved
one is seriously, chronically, or terminally ill can foster partnerships and bring supportive, clear com-
munication to the family’s care experience. Learning about the family’s history, their background,
the primary caregiver’s family role, and the needs of families are vital to patient- and family-centered
care. A family system and its pattern of communication precede any illness experience. That pattern
of communication sets the stage for specific caregiver communication behaviors that impact patient
care and outcomes.

O—Openings
DARIUS: I find that we are getting tired. Malvin forgets his pills more than he ever has. I have a
harder time remembering the details of his treatment. How much of that is age or depression
and how much is chronic illness fatigue, I don’t know. We have discussed the use of a scooter
to keep him more independent and less homebound. Malvin continues to say he does not
want to be a burden and would rather just walk into the wild and never be seen again. While
on a motorcycle ride, we looked at a possible site for his electric scooter to slip off of a scenic
overlook. That was a proposal to suggest he stay around longer and that I would help him
if it were what he truly wanted. He had discussed a motorcycle accident. I noted that if he
could still ride the motorcycle then he had lots of time still left. I didn’t want him ending it
too soon.

Darius presents a clear opening for discussion about dying, treatment, and caregiver fatigue. Open-
ings offer specific tools to assist the provider in traversing the challenging yet profoundly rewarding
moments of transition that require the clinical practice of intimate communication openings with
the patient/family. Replacing evasion with an opportunity to move into tension and avoidance is
essential in helping a patient/family receive palliative care. Observations of tension might be clear
indications of a needed transition in care. Complex interactions with patients and families coincide
with transitions in care and require profound and disclosive exchanges among patient/family and
providers. Communicating a transition to palliative care from hospital to home or to end-of-life care
and hospice requires nurses and physicians and other providers to address a patient’s/family’s fears and
feelings of hopelessness and to provide education about palliative care and its services. Facilitating
appropriate access to private health information, creating intimate openings to process transitions in

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Table 9.6 Research Reflecting the Openings Principle of COMFORT

Published Work Type of Research Paradigmatic

Perspective

Dillon, P., & Basu, A. (2016). African Americans and Applied Critical
hospice care: A culture-centered exploration of enrollment
disparities. Health Communication, 31(11), 1385–1394.
Siaw-Asamoah, D., Dickson, E. D., Hamenoo, E. S., & Basic Interpretive
Waldrop, D. (2020). Communicating taboo health subjects:
Perspectives from organizational leadership, clinical
psychology, and social work. In K. Smith & P. Ram (Eds.),
Transforming global health (pp. 193–211). Springer.
Lee, K., George, M., Lowry, S., & Ashing, K. (2020). Applied Scientific
A review and considerations on palliative care
improvements for African Americans with cancer.
American Journal of Hospice and Palliative Medicine.
doi:10.1177/1049909120930205

life and care, and understanding the impact of disclosure on patient/family relationships all play an
important role in communication in acute, chronic, and terminal illness.

R—Relating
MALVIN: I guess I let Darius take care of all of this stuff [medical issues]. I care about it, but I also
don’t. Less and less as the months pass. I can’t sustain the caring. What I do want is to do my
professional work. So it’s probably unfair for Darius. He’s working too, but also doing my medi-
cine and charts and phone calling.

Relating involves attending to the relationship with the patient/family to facilitate and pursue the
instrumental goals of palliative care. Here, Malvin wants to keep working, but he also is strug-
gling with his concern for Darius’s medical responsibilities. The phenomenon of the patient/family
acceptance of an illness status, as well as understanding patient/family perspectives on adjusting to
new information, is an always-moving problem in acute, serious, and terminal illness. Examining
the role of uncertainty and how it can impact goals of care discussions and, ultimately, decision-
making is vital. Relating to a patient/family creates the opportunity to learn about acceptability of a
diagnosis/prognosis, fears associated with uncertainty, and the inevitable dissonance among personal
goals in the face of serious illness. Multiple, conflicted, and unrealized goals are a reality that clini-
cians must navigate and that patients and families must face as they work together to acknowledge a
changing life and identity.

T—Team
DARIUS: The records are on the computer so he [physician] hasn’t even looked at the chart before
he comes in. He pulls up Malvin on the computer. In fact, he pulled up somebody else by
mistake.
MALVIN: He was starting to talk about things that didn’t make any sense. It’s not like he’s incompe-
tent . . . he’s well respected, and he’s just busy and overworked.

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Table 9.7 Research Reflecting the Relating Principle of COMFORT

Published Work Type of Research Paradigmatic

Perspective

Blinderman, C. (2020). Narrative palliative medicine: Basic Critical

Understanding and honoring the unique values and
goals of our patients. Journal of Palliative Medicine, 23(6),
744–745.
Goldsmith, J. V., Wittenberg, E., & Parnell, T. A. (2020). Applied Interpretive
The COMFORT communication model: A nursing
resource to advance health literacy in organizations.
Journal of Hospice and Palliative Nursing, 22(3), 229–237.
Bovero, A., Sedghi, N. A., Opezzo, M., Botto, R., Basic Scientific
Pinto, M., Ieraci, V., & Torta, R. (2018). Dignity-
related existential distress in end-of-life cancer patients:
Prevalence, underlying factors and associated coping
strategies. PsychoOncology, 27(11), 2631–2637.

DARIUS: Every chair was full, every room was full . . . and this time we had a different nurse than
last time we hadn’t had before and he didn’t know us either. He didn’t know who we were.
He didn’t know Malvin had cancer, you know, nothing. So you know, the difference between
having a doctor who has done prep work before he ever sees you and doctor who has no clue
who you are is huge.

Inconsistent messaging with patients, families, and colleagues is all due to a lack of coordination
among specialists, especially when physicians have divergent treatment recommendations (Ho
et al., 2016). A coordinated interdisciplinary team is vital to the labors of each individual palliative
care provider. Without coordinated care, the credibility of each team member is compromised,
and patients/families find their trust and confidence eroding. Providers need team communication
skills to lead palliative care teams and establish leadership within the team. Team-building skills
include encouraging other team members to actively contribute during team decision-making,
fostering opposing viewpoints when they arise in care planning, and evaluating team goals and
communication processes. In truly collaborative teams, intellectual resources are utilized; there is a
commitment to interprofessional care, respect among team members, inclusion of individuals with
diverse perspectives, effective meeting leadership, systems of mutual support and accountability,
and productive time management focused on new information relevant to patient/family care.

Concerns and Controversies Ahead

The area of palliative care and end-of-life communication research has grown significantly since the
first edition of The Routledge Handbook of Health Communication. Here we identify issues that present
communication limitations to quality care. The areas we share here overlap with one another, but
we describe them as discrete topics for clarity to articulate exigent challenges in need of exploration.

Provider Communication Barriers

Some healthcare providers are not aware of the scope of palliative care services or how and when pal-
liative care should be introduced to the patient and family. If the physician does not request palliative

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Table 9.8 Research Reflecting the Team Principle of COMFORT

Published Work Type of Research Paradigmatic Perspective

Rosenberg, J., Horsfall, D., Sallnow, L., & Gott, M. Translational Critical
(2020). Power, privilege and provocation: Public health
palliative care today. Progress in Palliative Care: Science and
the Art of Caring, 25(2), 75–77.
Thomas, T., Jackson, V. A, Carlson, H., Rinaldi, S., Sousa, Basic Interpretive
A., Hansen, A., Kamdar, M., Jacobsen, J., Elyse, R.,
Park, E. R., Pirl, W., Temel, J. S., & Greer, J. A. (2019).
Communication differences between oncologists and
palliative care clinicians: A qualitative analysis of early,
integrated palliative care in patients with advanced cancer.
Journal of Palliative Medicine, 22(1), 41–49.
Paladino, J., Kilpatrick, L., O’Connor, N., Prabhakar, Translational Scientific
R., Kennedy, A., Neal, B. J., Kavanagh, J., Sanders, J.,
Block, S., & Fromme, E. (2020). Training clinicians in
serious illness communication using a structured guide:
Evaluation of a training program in three health systems.
Journal of Palliative Medicine, 23(3), 337–345.

care, then the patient/family typically will not receive palliative care or will receive it very late in the
disease course, reducing any benefit of the palliative care. Similarly, physicians must refer to hospice,
and most providers have difficulty communicating about hospice or difficulty determining the best
time to refer to hospice care (Hawley, 2017). Providers continue to use ambiguous and technical
language to either implicitly discuss death or avoid discussing it in detail, and patients/families are left
to assume that palliative care is a term used to talk about dying, as a euphemism for death (Collins
et al., 2018). In many instances, details about the dying process are missing from discussions about
end of life (Anderson et al., 2019). If there is a lack of confidence in managing symptoms, addressing
psychological/social aspects of care, recognizing loss and grief, and an overall lack of communication
skills to initiate prognosis and end-of-life care discussions (Carey et al., 2019), providers will avoid
discussions about palliative or end-of-life care (Bennardi et al., 2020).

Patient/Family Communication Barriers

Although the general public believes that palliative care is an important service within a healthcare
system, many patients do not want it (Center to Advance Palliative Care, 2019). Why? Many patients
and family members are painfully unaware of palliative care: 54% of family caregivers in a national
survey had never heard of palliative care (Dionne-Odom et al., 2019). Of those 45% who were
aware of palliative care, 40% had significant misperceptions about the nature of palliative care: They
thought palliative care was tantamount to hospice care, and they agreed with the statement “When
I think of palliative care, I automatically think of death” (p. 1). One reason for this misunderstanding
is that terms used by healthcare providers to talk about palliative care are inconsistent and not well
understood (Collins et al., 2018). Racial minorities and those without a college degree are less likely
to know about palliative care (Dionne-Odom et al., 2019). When palliative care is not adequately
explained, suboptimal provider-patient/family communication restricts access and acceptance of
palliative care (Boucher et al., 2018).
The complexity for the patient and family is immense, and the COMFORT model identifies
entry points in the research on matters of resistance to, awareness of, and significant inequities to

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access palliative care. Dynamics of family relationships can be complex and prohibit opportunities
to discuss palliative care (Carey et al., 2019). Unexpressed grief between patient and family, patient/
family unwillingness to use certain services, and patient/family expectations that the general prac-
titioner will know what to do (Carey et al., 2019) add to barriers that affect everyone involved in
trying to achieve quality care. Profound inequities in palliative care offerings remain, and the gap
between those with complex comorbidities and those with fewer health challenges widens to push
minority populations farther and farther from quality care, specifically preventative, maintenance,
and palliative care.
Access to palliative care services remains a challenge. Trends in timeliness of referral reveal that
patients and families are still not receiving the benefits of palliative care (Hawley, 2017), and still
many populations have no access to palliative care. Despite availability at diagnosis, there is a ten-
dency for patients to receive palliative care late in the disease trajectory. A systematic review con-
cluded that the appropriate referral is within three months of diagnosis of advanced disease (Hui
et al., 2015), not waiting for symptoms to exacerbate or for impending end of life. The timing of
palliative care referral needs further clarification, with more research on palliative care integration
(Hui et al., 2015). Specifically, there is a need to understand how to introduce palliative care into
clinical practice so that patients and family caregivers receive it early in the illness trajectory.

System Communication Barriers

Often the patient and family receive conflicting messages from different specialty teams (e.g., between
palliative care and oncology or between primary physicians and palliative care; Newlin & Michener,
2019). Decision support is therefore not available to the patient/family who must choose between
their specialty team and their primary care physician. With multiple healthcare providers involved in
chronic illness care, clinical information about referral to hospice may be miscommunicated among
members of the healthcare team. The use of technical and ambiguous language and varied levels of
directness contribute to the difficulty of communication about end of life (Anderson et al., 2019).
An overall lack of time to provide palliative care or other time pressures reduce the ability to initiate
end-of-life discussions or meet with family (Carey et al., 2019).
The patient’s/family’s level of understanding, desire for information, and the patient’s current
symptoms all impact communication about prognosis and dying (Anderson et al., 2019). Health
literacy is at the crux of many impediments and pathways to quality care. Health information is a
part of the health literacy challenge, but health information alone cannot equate with understanding
and health behavior (Goldsmith et al., 2020). The booming area of health literacy research must be
rigorously informed by health communication research. Cultural background influences under-
standing and response to palliative and end-of-life care services (Mayeda & Ward, 2019). Lower
health literacy, poorer access to healthcare resources, and lack of effective communication caused by
cultural or language differences—these are the profound barriers faced by the majority of terminally
ill patients and their families (Mayeda & Ward, 2019).

Supply and Demand Barriers

Although palliative care is considered the gold standard of care for seriously ill patients and the
majority of U.S. hospitals have a palliative care program (Center to Advance Palliative Care, 2018,
February 28), current resources cannot meet future demand. There is increasing demand to prepare
generalist providers to offer palliative care communication, yet there remains an absence of such
communication skills training for providers (Bennardi et al., 2020). Currently, palliative care com-
munication training tends to be physician-focused, with only a smaller amount of work devoted to
nurses and other clinicians specifically (Wittenberg et al., 2018). Provider education about palliative

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care communication should include ways to share information about the diagnosis/condition and
care options, how to involve the family in decision-making, and the importance of using plain lan-
guage to facilitate patient and family understanding (Bennardi et al., 2020). Revisioning workforce
preparation so that all providers are equipped with palliative care communication resources would
mean that undergraduate training includes curricular content in this direction. Allocating additional
resources in care delivery, which includes telehealth and videophone delivery for palliative care com-
munication, is an inevitable shift in care provision as well, but providers and care-recipients need
orientation for this transfer of care to digital platforms (Jess et al., 2019).

Directions for Future Research and Conclusion

We see the continued growth in palliative care and end-of-life communication research unfolding
across three domains (Wittenberg-Lyles et al., 2015). First, communication scholars can contribute
to education and training about palliative and end-of-life communication for healthcare providers
and clinicians. One of the highest reported enablers of palliative care is education about commu-
nication and psychosocial issues (Carey et al., 2019); however, the training needs of primary care
providers remain unclear (Hasson et al., 2020). Communication researchers can expand the scope
of communication topics beyond breaking bad news (Wittenberg et al., 2015) and explore what the
“standard” of palliative care communication is for all patients.
The American Society for Clinical Oncology/American Academy of Hospice and Palliative
Medicine Guidance Statement on high-quality palliative care in oncology practice identified the
need for palliative care communication skills training for cancer clinicians (Bickel et al., 2016). The
panel recommendations emphasized the need for continuing education to teach primary palliative
care skills to cancer care providers, including how to engage in “honest and compassionate com-
munication about treatment options and their limits in advanced disease” with patients and families
(Hui et al., 2016, p. 8). Lectures and curriculum on palliative care communication are needed so
that other clinicians can learn how to introduce and explain palliative care and refer to palliative care.
Even seasoned hospice nurses who have worked in the field for more than five years desire additional
communication training (Clayton et al., 2019).
The COMFORT communication model presented in this chapter is an example of applied
communication scholarship for improving health communication training. More communication
scholarship is needed to address the integration of communication research in communication cur-
ricula in continuing education and in undergraduate healthcare curriculum (Carey et al., 2019). An
applied service learning course addressing end-of-life communication showed that service learning
can lower death and dying communication apprehension and increase student willingness to interact
with dying patients and their families (Pagano, 2016).
Training healthcare providers continues to be the best approach to improving processes of care
vis-à-vis improved communication skills, but study outcomes have not shown differences in care
outcomes (e.g., place of death, pain control, patient distress), and there are inconsistent differences
in patient outcomes such as quality of life (Selim et al., 2020). Thus, although research demonstrates
that training can improve providers’ communication skills, confidence, and so on, there remains a
lack of evidence to demonstrate that improved communication skills result in better patient care.
The training needs for primary care providers and how such training would have an impact on
patient and family care are yet to be determined (Hasson et al., 2020).
Second, communication across palliative care contexts needs to be researched in order to develop
an evidence base for communication practices and care coordination. Communication between the
palliative care team and other specialty services; across disciplines; between the palliative care team
and patients, services, and families; and between patients and their families about transitions from

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active treatment and palliative care to hospice is needed to inform improved practices and structures
across the palliative care spectrum (Hasson et al., 2020).
Especially salient to care coordination across the care trajectory is discussing goals of care
with the patient and family. Setting goals regarding care communication is a continuous pro-
cess, requiring repetition (Anderson et al., 2019) and patient/family comprehension; commu-
nication between patient, family, and provider; and collaboration among all healthcare providers
(Bennett & O’Conner-Von, 2020). The term “goals of care” in describing conversations with
the patient and family is not well defined in the literature and is commonly masqueraded as a
decision-making conversation (Edmonds & Ajayi, 2019). From the provider’s perspective, the
conversation is about gain/loss in making decisions, whereas the patient and family simultaneously
attempt to cope with the distress of the situation and conversation. Moreover, there is a need to
establish sound measures of “goals of care” communication (Bennett & O’Conner-Von, 2020),
not only between palliative care teams and the patient/family but also between the patient/family
and primary care providers.
Finally, end-of-life communication research should focus on developing and testing communica-
tion interventions. The patient’s perspective is largely missing from palliative care research (Hasson
et al., 2020), and currently there are no observational studies on the nurse’s role in palliative care
(Anderson et al., 2019). Communication scholarship in palliative care needs to do a better job expli-
cating the components of the types of conversations occurring (e.g., goals of care, prognosis, etc.)
and begin developing outcome measures associated with both communication qualities and patient/
family health outcomes.
Patient decision aids and patient-provider communication increase engagement and collabora-
tion, with standardized protocols between patient, provider, and family most beneficial in increasing
communication (Bennett & O’Conner-Von, 2020). Patient decision aids increase patient and fam-
ily knowledge of treatment risks and benefits (Bennett & O’Conner-Von, 2020), yet more work is
needed in this area. However, more focus on family members’ roles and participation in discussions
about palliative care is also needed (Anderson et al., 2019). Research is required to learn more about
the involvement of family caregiving, including involvement in decision-making, impact of the
caregiving role, and bereavement support needs (Hasson et al., 2020).
Barriers to palliative care stem from the patient and family, as well as providers. Barriers include
a lack of awareness about palliative care; a lack of communication and collaboration between health-
care providers/team members; the emotional relationship between the provider and the patient/
family or between the patient and family, which causes reluctance to discuss end of life; and attitudes
and beliefs about palliative care (Bennardi et al., 2020). As systems of healthcare mirror the inequities
of society, the path ahead in communication research must prioritize populations who are not in a
network or part of a system, who are most oppressed by poverty and complex comorbidities, and
who are least likely to receive palliative and end-of-life care.

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 10
SOCIAL SUPPORT, SUPPORTIVE
COMMUNICATION, AND
HEALTH
Erina L. MacGeorge and Yanmengqian Zhou

When leading thinkers in public health and medicine began to theorize about the relationship
between social support and health (Cassel, 1976; Cobb, 1976; Moss, 1973), they likely did not
envision the immense research literature that would subsequently develop, spanning disciplines,
theoretical perspectives, methods, and applications. Scholarly interest in social support processes
has generated thousands of studies demonstrating that the support of family members, friends, and
other social network members is a positive influence on health and well-being, increasing lifespan,
preventing disease and aiding recovery, and improving mental health (see Uchino et al., 2018, 2020).
Early arguments over whether social support has a direct effect on health regardless of stress level
or a “buffering” effect in the presence of stress (Cohen & Wills, 1985) have given way to nuanced
theorizing about multiple causal mechanisms through which social support operates (Uchino et al.,
2018). These mechanisms can be behavioral (i.e., social support influences the recipient’s adoption,
maintenance, or termination of health-relevant behaviors), psychological (i.e., social support affects
factors such as stressor appraisal, emotional distress, and mental illness), or biological (i.e., social
support affects cardiovascular, neuroendocrine, metabolic, and immune function, either directly or
indirectly).
This huge research literature indicates that the association between social support and health
varies significantly as a function of how social support is conceptualized and measured. “Social sup-
port” is now a term employed across multiple disciplines to represent related but distinct constructs
(MacGeorge et al., 2011; Taylor, 2011). One key distinction is between structural and functional
definitions of social support (Uchino et al., 2018). Structural definitions and operationalizations,
often employed by sociologists and epidemiologists, emphasize the quantity, types, or configuration
of relationships through which aid can be accessed (e.g., whether someone is married or how their
social network is arranged; see Fink et al., 2015). Functional definitions and operationalizations,
frequently used by scholars in psychology and communication, highlight the assistance provided,
but functional approaches also vary in important ways. One approach emphasizes the perceived avail-
ability of support, or the belief that caring others are present to provide assistance when needed (Wills,
1991). Other functional approaches focus on behavior, emphasizing either received support (i.e.,
reported behavior, usually by the recipient) or enacted support (i.e., involving some kind of objective
measure or manipulation). There is massive evidence that perceived availability of support, especially
emotional support, has a reliable, positive association with better health outcomes, independent of
actual supportive behavior (for a review, see Taylor, 2011). Received and enacted support exhibit
more variable effects: They are more likely to be unrelated to or even negatively associated with

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 Social Support, Supportive Communication

health-relevant outcomes (Taylor, 2011; Uchino et al., 2018). In part, this variation reflects support
seeking and provision that occur in the wake of stressors, but the influence of support-intended
behavior can also be negative because its effects are contingent on recipients’ interpretations and
preferences, the relationship with and interpersonal skills of the support provider, and characteristics
of the supportive behavior itself, such as sensitivity or directness (Uchino et al., 2018).
Supportive communication has been described as “verbal and nonverbal behavior produced with
the intention of providing assistance to others perceived as needing that aid” (Burleson & MacGeorge,
2002, p. 374; MacGeorge et al., 2011). The study of supportive communication, therefore, reflects
the received and enacted perspectives on social support, depending on the operationalization of
communication. Scholars in psychology and allied fields often focus on the received quantity of
supportive communication (e.g., frequency of received emotional support), whereas scholars with
homes in the communication discipline more frequently emphasize its enacted quality (e.g., level
of emotional sensitivity expressed by support provider in interaction with recipient). Compared to
research on enacted support, there is a longer and broader history of research on received support that
directly addresses health conditions, health-related behavior, or longitudinal outcomes. Research on
enacted support (and especially research conducted within the communication discipline) has tended
to emphasize stressors that are not specifically health concerns, immediate message evaluations (e.g.,
perceived effectiveness), and psychological or relational outcomes (e.g., coping facilitation, liking for
the support provider). However, a growing focus is placed on enacted support with regard to health
stressors (e.g., Ray & Veluscek, 2018), along with interest in the immediate physiological impacts
of supportive interactions (for a review, see Priem, 2020). Regardless of approach, research on sup-
portive communication and health typically examines supportive communication in the context of
specific health stressors, rather than examining its capacity to sustain overall health. This focus makes
sense: Overt supportive behavior is more likely to be needed and provided when a specific stressor is
apparent, and neither received nor enacted support predicts general health outcomes (e.g., all-cause
mortality) as well as perceived support does.
The following sections provide an overview of research connecting received and enacted sup-
portive communication and health, emphasizing recent studies and noting key theories that explain
variation in the quality and impact of support. We focus on the provision of support from social net-
work members (e.g., family, friends) rather than people in professional helping roles (e.g., doctors,
therapists). The vast majority of these studies fit squarely within the scientific paradigm, emphasiz-
ing prediction of health-related outcomes from aspects of enacted or received support. Occasion-
ally, research reflects an interpretive or critical-cultural approach, utilizing qualitative methods to
illuminate the supportive meanings participants attach to behaviors from social network members
(Carlson, 2014; Fisher, 2010) and to challenge “one-size-fits-all” advice about seeking and providing
support (Goldsmith & Miller, 2015). Given the extent to which supportive communication with
regard to health now occurs online and the unique characteristics of that context, the first section
focuses on “offline” or face-to-face communication and the second on computer-mediated support.
We then conclude with a discussion of directions for future research across both contexts.

Supportive Communication and Health

Research on received and enacted support often distinguishes between categories of supportive
behavior (Cutrona & Russell, 1990), sometimes focusing on one type or comparing the effects
of several. In addition to emotional and informational support, most typologies include tangible
support (i.e., practical assistance, also called instrumental support), along with network support
(i.e., connecting a support recipient to other helpers). These are beneficial forms of support for
people with health concerns (Bennich et al., 2017), but there is much less research examining
the communication involved. The following discussion first addresses emotional support (including

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esteem support) and informational support (including advice) before briefly addressing other forms
of support.

Emotional and Esteem Support

Emotional support, typically defined as expressions of care, concern, sympathy, or empathy, is a key
form of supportive communication. Esteem support is often conceptualized as an aspect of emo-
tional support, but it can be differentiated by its narrower focus on improving recipients’ feelings
about themselves and their attributes, abilities, or accomplishments (Holmstrom & Burleson, 2011).
Considerable research indicates that emotional and esteem support received from spouses, partners,
family, and friends is valued by people with health conditions, including Type II diabetes (Bennich
et al., 2017), breast cancer (Fisher, 2010), knee replacement surgery (Goldsmith et al., 2017), and
unintended pregnancy (Gray, 2014). Greater reported receipt of emotional support is frequently
associated with positive psychological and behavioral outcomes, such as greater health competence,
self-efficacy, and post-traumatic growth for cancer patients (Arora et al., 2007; Schroevers et al.,
2010), quicker entry into medical care after HIV diagnosis (Cook et al., 2018), and improved self-
care by diabetics (Graven & Grant, 2014). Similarly, esteem support messages provided as part of an
intervention for patients with diabetes were associated with a decrease in average blood glucose levels
(Robinson et al., 2019), and esteem support from friends predicted greater physical activity among
college students (Belanger & Patrick, 2018).
A great deal of supportive communication theory and research has focused on identifying
characteristics of higher and lower quality emotional support (Burleson, 2003; MacGeorge et al.,
2011). A key concept in this research literature is verbal person centeredness (VPC), defined as
the extent to which the feelings and perspective of a distressed other are acknowledged, elabo-
rated, and legitimized (Burleson, 2003). More than three decades of research testing “person-
centered theory” (Jones & Bodie, 2014) has demonstrated strong, consistent, and positive associations
between VPC and outcomes that include perceived effectiveness, reappraisal of stressors, emotional
improvement, and appreciation for support providers (High & Dillard, 2012; Samter & MacGeorge,
2017). Although most of this research has not been explicitly health-focused, recent studies indicate
that VPC produces similar outcomes in groups experiencing health-related stressors. Breast cancer
patients perceived higher VPC messages as delivering higher quality emotional support, producing
more emotional improvement, and creating fewer negative relational ramifications; messages low
in VPC were evaluated as similar to receiving no support at all (Ray et al., 2020; Ray & Veluscek,
2018). Research outside the person-centered paradigm points to parallel qualities of emotional sup-
port as positive influences on the well-being of people experiencing health issues. For example,
young women coping with an unintended pregnancy report benefiting from emotional support
that is positive in tone, nonjudgmental, and sensitive and that conveys positive regard (Gray, 2014).
Developed to explain the unique character and effects of esteem support, the cognitive-emotional
theory of esteem support messages (Holmstrom & Burleson, 2011) contends that these messages
are more effective at reducing distress when they are emotion- rather than problem-focused (i.e.,
emphasize change in the recipient’s perspective rather than the stressor itself or actions in response
to it) and when they encourage rather than attempt to force this change. This contention has been
largely supported by empirical evidence (e.g., Holmstrom et al., 2015), although problem-focused
esteem support is more effective than predicted (Shebib et al., 2020). To date, however, studies spe-
cific to health stressors are lacking.
Although receiving emotional and esteem support regarding health concerns often has positive
effects, especially when the quality of enacted support is high, there are important moderators of
its benefits, including characteristics of support providers, recipients, and their relationships (Gold-
smith & Miller, 2015; Uchino et al., 2018). One key influence is recipient desire or preference for

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support. Consistent with optimal matching theory (Cutrona et al., 2007) and the concept of “sup-
port gaps,” a growing number of studies indicate that the outcomes of receiving emotional support
for health issues depend on matching the preferences of the support recipient. At the same time,
cancer patients and survivors who expressed needing emotional support and did not receive it were
more psychologically distressed than those who needed it and received it (Merluzzi et al., 2016),
whereas people coping with unintended pregnancy experienced less improvement in affect if they
received either too much or too little emotional support (Crowley et al., 2019). Surplus emotional
support may create concern about its sincerity or generate unwanted feelings of dependency.

Informational Support and Advice

Informational support, typically defined as the provision of information and advice, is another com-
mon form of received and enacted social support as it relates to health. This form of support is
regarded as valuable across many health issues. For example, patients recovering from total knee
replacement find value when other former patients provide information about surgeons, types of
treatment, exercises, and recovery strategies and trajectories (Goldsmith et al., 2017). Similarly, older
African Americans with Type II diabetes report that diabetic peers provide useful advice on diet and
medication to them (Brown & Shorter, 2020). Receipt of informational support is also related to
a variety of positive psychological and behavioral outcomes across health issues. For example, for
women with breast cancer, informational support from friends is related to greater social and family
well-being at five months post treatment (Arora et al., 2007). Multiple studies of social support and
self-care by individuals with heart failure indicate that informational support helps them maintain
self-care behaviors that enhance health and well-being (Graven & Grant, 2014). However, it is clear
that informational support, and especially advice, can produce ambivalent or negative responses
from recipients and is more likely to generate these responses than emotional support. For example,
women with breast cancer report mixed reactions to advice about managing side effects such as dry
mouth and hair loss (Fisher, 2010), and emerging adults both appreciate and selectively ignore advice
from their parents (Carlson, 2014).
Theories of advice as a form of supportive communication help to explain variation in recipients’
responses to advice. Advice response theory (Feng & MacGeorge, 2010; MacGeorge, Guntzviller,
et al., 2016) indicates that features of advice message content and style, together with characteristics
of advisors, influence the evaluation and outcomes of advice. In particular, advice is more likely
to be appreciated and implemented by recipients if the advised action is deemed efficacious and
feasible and does not involve too many limitations, if the message style is polite (i.e., conveys liking
and respect for autonomy), and if the advisor has qualities indicative of reliable advising (e.g., like-
ability, expertise, and trustworthiness). Although the theory principally has been tested with regard
to “everyday” problems, recent research demonstrates its applicability to explaining the uptake of
exercise advice given by parents to emerging adults (Carlson, 2016; Guntzviller et al., 2017). These
studies also highlight the extent to which advice outcomes are more positive when advice is desired
or solicited by recipients and how relationship qualities (e.g., normal tensions between young adults
and their parents) can affect responsiveness to advice.

Other Forms of Received and Enacted Support

Although most research focuses on emotional and informational support, there is good evidence
that other forms of assistance are valuable to people with health conditions. These include tan-
gible support (Bennich et al., 2017; Goldsmith et al., 2017) and network(ing) support (Peterson
et al., 2012). Unfortunately, these studies largely overlook the enactment of these support types,
although some studies indicate that tangible support can be provided in ways that make support

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recipients more comfortable with being helped, more empowered to engage in appropriate self-
care, and more appreciative of support providers (Goldsmith et al., 2012). Other studies suggest the
importance of studying communication that is less overtly “supportive.” For example, people with
various health conditions identify visits and social activities as important forms of emotional sup-
port (Goldsmith et al., 2017), and not having a desired level of companionship has been associated
with negative health outcomes (Thong et al., 2007). These studies point to the value of studying
supportive communication in conjunction with “everyday talk” (Barnes & Duck, 1994; see also
Chapter 11, this volume).

Health and Supportive Communication in Online Contexts

In recent decades, with the development of new communication technologies, online venues are
becoming an increasingly attractive alternative for seeking and receiving social support (Walther &
Boyd, 2002). Internet users engage in supportive interactions by participating in online support
groups or through various technologies such as social networking sites, instant messaging, and email
on a wide variety of health topics (Attai et al., 2015; Coulson, 2005). It is estimated that 8% of U.S.
Internet users living with chronic disease and 7% of those who report no disease have participated in
online support groups (Fox & Purcell, 2010). In addition, 5% of Internet users with chronic condi-
tions have obtained health-related information and 2.5% have engaged in a health-related group on
social networking sites (Fox & Purcell, 2010).
The popularity of online platforms for support exchange is not surprising given the unique
affordances associated with computer-mediated communication (CMC) channels. To start with,
CMC channels grant people easy, convenient access to support networks that transcend temporal
and geographical barriers and connect users to expanded networks with heterogeneous informa-
tion (Wright & Bell, 2003). From an optimal matching perspective, such access is beneficial in that
it makes it easier to receive support that meets one’s expectations and needs (Turner et al., 2006).
People can also more easily meet others who have similar experiences online and, as a result, expe-
rience greater understanding and sense of belongingness (Tanis, 2008). Another related advantage
of online channels is the access to weak tie networks (i.e., people who communicate on a regular
basis but are not close to one another). From the theoretical perspective of the strength of weak
ties, individuals can access more diverse perspectives and information through weak ties with fewer
interpersonal risks and social complications (Wright & Miller, 2010). In addition, the anonymity
afforded by online channels makes it an environment where people can seek and receive support
more comfortably with less self-awareness and reduced risk of stigmatization (DeAndrea, 2015;
Joinson, 2001). According to the social identity deindividualization (SIDE) theory (Reicher et al.,
1995), the absence of personal identity cues in CMC may also make a common social identity
shared by a group (e.g., an online support community) more salient, further strengthening the sense
of similarity, increasing interpersonal trust, and reinforcing group norms (Tanis, 2008). Lastly, as
CMC is largely text-based, enables asynchronicity, and has fewer nonverbal cues than face-to-face
communication, it gives considerable room for interaction management. The hyperpersonal model
of CMC, for example, identified four components of the communication process online that may
make mediated interpersonal communication more socially desirable or intimate than parallel offline
interactions: (a) senders’ selective self-presentation, (b) recipients’ idealized perception, (c) optimized
message construction enabled by channel features (e.g., asynchronous system and message edibility
facilitate the creation of desirable messages, reduced nonverbal cues redirect cognitive resources into
message composition), and (d) a feedback system that intensifies the dynamics that each compo-
nent contributes in ways that reflect the process of behavioral confirmation (Walther, 1996). Such
manageability and controllability of CMC is considered another big attraction of online support
(Walther & Boyd, 2002).

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Computer-Mediated Supportive Communication and Health Outcomes

Highlighting the psychological and behavioral pathways through which social support is connected
to health, substantial research has shown that online support can function as a useful resource that
facilitates coping and contributes to health outcomes (Wright, 2016). For example, studies have
observed that support received from online support communities is associated with reduced stress
and depression, greater empowerment, improved post-traumatic growth and perceived quality of
life, and better psychosocial well-being among cancer survivors (Hong et al., 2012). Receiving sup-
port on various social networking sites can also be predictive of positive health outcomes (e.g., Cole
et al., 2017). A recent systematic review, for instance, shows that receiving Facebook-based support
improves general physical and mental health and well-being and reduces symptomology associated
with mental illness (Gilmour et al., 2020).
A great deal of research in the context of online supportive communication emphasizes participa-
tion in support groups, which includes support exchanges among peers. Rains and Young’s (2009)
meta-analysis showed that participation in a computer-mediated support group increases perceived
support, reduces depression, enhances quality of life, and promotes self-efficacy to manage one’s
health condition. Such participation also improves mood and coping skills (Rodgers & Chen, 2005),
promotes weight loss (Kim et al., 2017), and facilitates empowerment (Mo & Coulson, 2012).
Indeed, online support group participation has been linked to a number of empowering experi-
ences, such as accessing information and advice, building confidence in interactions with health pro-
fessionals, facilitating decision-making related to treatment, improving ability to manage challenges,
and enhancing optimism and self-esteem (Holbrey & Coulson, 2013; van Uden-Kraan et al., 2008).
And these empowerment experiences are connected to the process of receiving support, particularly
informational and emotional support (Barak et al., 2008). Some studies further indicate that effects
of participation on health outcomes are shaped by various factors such as individual differences (e.g.,
emotional expressivity), social comparison and identification strategies (e.g., downward vs. upward),
and ways of participation (e.g., lurking such that one only reads the messages vs. posting; Baten-
burg & Das, 2014, 2015; Han et al., 2014).
Similar to research on the face-to-face setting, a sizable body of computer-mediated support
research has also explored the various types of support that people receive and value in the online
context (Rains et al., 2015). Among the types of support, emotional and informational support are
the most frequently observed. For example, on bariatric surgery discussion forums, patients are often
provided with emotional support that encourages adherence to surgical guidelines and weight loss
progress and validates their experiences and perspectives; patients also receive informational support
and advice that provides factual data and helps with the coping process (Atwood et al., 2018). Mem-
bers of online support groups for Crohn’s disease or ulcerative colitis frequently receive emotional
support manifested as relational support, encouragement, empathy, and understanding and informa-
tional support regarding symptom management and treatment (Britt, 2017). Users also obtain similar
emotional and informational support from online support communities on irritable bowel syndrome
(Coulson, 2005), cancer (Donovan et al., 2014), and Parkinson’s disease (Attard & Coulson, 2012),
among other health conditions. Although relatively less frequent, esteem support (e.g., compliments,
affirmation) and network support (e.g., companionship, group referrals) are also available online,
with tangible support (e.g., postings to perform an action in response to a need) being the least com-
mon due to the online environment (e.g., Atwood et al., 2018; Britt, 2017).
Considerable evidence indicates that receiving different types of computer-mediated support
is connected to a wide range of health outcomes in various ways. For example, studies show that
receiving emotional support in online groups alleviates a sense of isolation and normalizes emotional
reactions among individuals affected by fertility problems (Malik & Coulson, 2008), reduces illicit
drug use among individuals in recovery for substance use disorders (Y. Liu et al., 2020), and leads to

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improved quality of life and decreased depression among women with breast cancer (Moon et al.,
2017). Emotional support expressed through religious language in online groups for breast cancer
directly increases active coping and planning and indirectly enhances positive reframing by increas-
ing perceived bonding among women with breast cancer (McLaughlin et al., 2016). Some studies
further demonstrate that the effect of receiving emotional support online on health outcomes varies
depending on various provider (e.g., gender) and recipient characteristics (e.g., emotional commu-
nication competence; Spottswood et al., 2013; Yoo et al., 2014).
Informational support promotes healthy eating among college students by increasing online health
information seeking (McKinley & Wright, 2014). Informational support also increases knowledge
about breast cancer and reduces anxiety among patients (Attai et al., 2015). Participants have also
reported that accessing information support in online groups on infertility empowered them to
develop a stronger sense of control of their situation and be more proactive in decision-making and
overcoming their infertility (Malik & Coulson, 2008). Quality of informational support or advice
received online, however, varies substantially, which has important implications for users’ medical
decision-making and health outcomes (Robillard & Feng, 2017).
Receiving esteem support on social networking sites is associated with life satisfaction through
an enhanced sense of community (Oh et al., 2014). Esteem support received in online health com-
munities enhances individuals’ sense of belonging to the communities, which further promotes
their “value co-creation” behaviors (i.e., participation and community citizenship activities such as
information sharing and feedback provision; S. Liu et al., 2020). Esteem support from online com-
munities is also a strong predictor of sense of empowerment, which in turn functions to increase
patients’ intention to actively communicate with their doctors (Oh & Lee, 2012). Online esteem and
network support also directly increase recipients’ physical activity and health behavior and reduce
risk of suicidal ideation among members of online mental health communities (Cavallo et al., 2014;
De Choudhury & Kiciman, 2017; Oeldorf-Hirsch et al., 2019).
The beneficial outcomes of receiving online support or participating in online support groups,
however, are not always observed (e.g., Eysenbach et al., 2004; Utz & Breuer, 2017). A systematic
review by van Eenbergen et al. (2017), for instance, indicated that the impact of participation in
online cancer communities was nonsignificant in most cases and was contradictory in some cases.
A number of studies have identified various disempowering experiences associated with online sup-
port group participation, including reading about negative experiences of others, receiving inac-
curate information, feeling like an outsider, becoming too preoccupied with the participation, and
misunderstandings and disagreements among group members (Attard & Coulson, 2012; Holbrey &
Coulson, 2013; Malik & Coulson, 2008). Focusing on an online addiction support forum, Malloch
and Hether (2019) found that for participants with low health stigma, receiving low person-centered
support decreased their health self-efficacy through reducing perceived online emotional support
availability. They also found that for users with high health stigma, receiving less emotional sup-
port than they desired (i.e., under-benefitted emotional support) reduced their health self-efficacy
through decreasing perceived support availability (Malloch & Hether, 2019). These findings together
point to the boundary conditions under which social support in the online context is more (or less)
beneficial.

Future Directions for Research on Supportive Communication

and Health
As the prior sections indicate, supportive communication in both offline and online settings affects
health outcomes across a variety of health conditions and concerns, often by influencing the psy-
chological or behavioral responses of support recipients. Further, communication theories provide

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useful insight into some of the qualities of support that matter for health-related outcomes. However,
multiple important directions remain for future research to improve both theory and application.
One essential direction is more testing of theory that has been developed to explain variation
in the effectiveness of supportive communication but has been insufficiently tested with regard to
health issues and outcomes. Along with person-centered theory (Jones & Bodie, 2014), advice
response theory (MacGeorge, Guntzviller, et al., 2016), and the optimal matching or support gap
perspective (Cutrona et al., 2007), scholars should examine other theories of message effectiveness
(e.g., the cognitive-emotional theory of esteem support messages; Holmstrom & Burleson, 2011),
message reception (Bodie & Burleson, 2008), supportive interaction (Burleson & Goldsmith, 1998;
Feng, 2009), and relationship processes (relational turbulence) for their relevance to health issues and
outcomes. Such testing will not only improve the scope and validity of the original theories but also
offer more detailed guidance for interventions to improve the quality of support communicated to
people experiencing health-related stressors.
Research is also needed to better address the provider’s perspective and the role of support-seeking
behavior in determining the health-relevant outcomes of supportive communication. Unfortunately,
even well-intentioned support providers sometimes offer poor-quality emotional support, such as
support that minimizes the impact of women’s health concerns (Meyer, 2016; Rubinsky et al.,
2020). Understanding the interplay of providers’ ability and motivation to offer effective support
is critical to intervening to reduce the negative effects of poor-quality support (Ray et al., 2019).
Compared to the provision of support, the communication of support seeking is understudied and
deserves more attention (MacGeorge et al., 2011), especially given the indications that support-
seeking behavior influences the quality of support provided to groups with stigmatized health condi-
tions (Steuber & High, 2015; see also Chapter 6, this volume). Relatedly, future research is needed
to extend the focus on seeker-helper communication to account for the dynamics of masspersonal
communication, in which support seekers online may interact with multiple support providers and
the providers may interact among themselves (MacGeorge, Feng, et al., 2016).
Focusing on the online environment, more research is needed to connect the affordances associ-
ated with CMC, especially those that transcend specific technologies, to health outcomes. Future
research would also benefit from investigating how modality-related factors interact with message
features, relational dynamics, and other contextual factors in shaping the outcomes of computer-
mediated support. However, we also concur with scholars who call for an ecological approach to
social support such that the effect of online support is not investigated separately from but rather in
tandem with offline resources (Pan et al., 2019; Rains & Wright, 2016). Indeed, online platforms
are a relatively redundant source of social support for people who receive substantial offline support
(Cole et al., 2017). Taking an ecological approach, therefore, will help us better understand how
and why online and offline resources respectively contribute to the outcomes we observe. Such an
approach would also allow examination of relationships between giving and receiving support, such
as the provision of support online as a function of receiving support offline. Specific to informa-
tional support and advice, an ecological approach also facilitates the investigation of the implication
of multiple, even conflicting, messages from diverse online and offline sources on individuals’ health
decision-making (Sellnow et al., 2008).
Finally, as previously noted, research on supportive communication has focused principally on
psychological and behavioral pathways connecting social support and health. Relatively little is cur-
rently known about the biological or physiological influences of received or enacted support. There
is intriguing evidence, however, that the quality of emotional support in interaction can influence
physiological recovery from a stressful experience (Priem, 2020; Priem & Solomon, 2015). Research
with this focus may ultimately help to illuminate longitudinal effects of received and enacted support
on health outcomes.

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 11
EVERYDAY INTERPERSONAL
COMMUNICATION ABOUT
HEALTH AND ILLNESS
Katharine J. Head, Jennifer J. Bute, and Katherine E.
Ridley-Merriweather

Where do people learn about health and illness? How do individuals know how to interpret signs
from their bodies, like having a high temperature is a sign that something is wrong? What prompts
them to ask for help or make an appointment with a healthcare provider? And perhaps most germane
to readers of this chapter, how do people communicate about those things with others in their lives?
Reflecting on the interconnectedness of people and how they manage their health, Susannah Fox
of the Pew Research Center (2011) noted, “peer-to-peer healthcare acknowledges that patients and
caregivers know things—about themselves, about each other, about treatments—and they want to
share what they know to help other people” (para. 15). In other words, lay people have an expertise
that they communicate within their social networks and that they rely on to manage both day-to-day
health and chronic health conditions. The interpersonal communication about health and illness in
which people engage every day is an important—and often foundational—space in which we learn
about and manage health and illness. In this chapter, we will give a broad overview of the ways in
which everyday interpersonal communication (hereafter, everyday IPC) about health and illness
plays a role in people’s lives, including what is talked about within close social networks, how every-
day IPC can influence individual health behaviors and decisions, and how the act of communicating
about health and illness can be a form of communication labor.

People, Topics, and Channels Involved in Everyday IPC About Health

Think about the last time you discussed a health topic with people in your life. Who were the indi-
viduals to whom you were talking? About what health topics did you talk? Was it the first or the
fortieth time you had discussed that topic? It is likely not hard to see in your own everyday lives that
people talk about health—a lot. In this section, we examine everyday IPC about health and wellness,
including the people with whom and the topics about which individuals are talking, as well as the
channels through which they share that information.

With Whom Are We Communicating?

Families
The important everyday IPC among family members can have tremendous, lifelong effects on fam-
ily members’ health behaviors, personal safety, and outlook on mental and physical health (Bylund &

DOI: 10.4324/9781003043379-13 149

 Katharine J. Head et al.

Duck, 2004). As children grow up, including them in decision-making conversations about their
own health affects their abilities to make good behavior decisions for themselves later in their teen
years (Boone, 2015), potentially increasing their likelihood of avoiding risky behavior. Also, as
the scope of the family circle broadens, the potential effects and benefits of everyday health talk
increases, even in casual conversations. For example, when Kaplan et al. (2006) studied intergenera-
tional communication, they found that when children, parents, and grandparents talk about healthy
eating, each group learns from the other about healthy eating habits. Beyond the effect on learning
about and maintaining health, the continuous nature of familial relationships also means that family
members are able to communicate social support around health through their everyday IPC (Yang &
Wendorf, 2017).
The everyday IPC literature focusing on families often highlights marital relationships. For exam-
ple, research on everyday IPC among married people shows that this communication affects their
mental and emotional health in important ways. Marital partners’ feelings and relationship percep-
tions may be affected through talking about each partner’s own relationship view (Robles et al.,
2013). For example, one partner may express that she feels valued when the couple spends time
together, which may make her spouse understand the importance of quality time. When people
are involved in close relationships (such as marriage), they sometimes jointly tell their shared stress-
ors and stories about their challenges to other people, such as friends, other family members, and
counselors (Koenig et al., 2010). This joint storytelling relates to the couple’s mental health both
individually and as a pair and is an important narrative conversation that could be vital to their health
and that of their relationship (Hughes et al., 2005; Koenig Kellas et al., 2010).

Close Social Networks

Social networks can function similarly to families in that they comprise people who share close
relationships. For instance, older women often discuss health and aging in ways that combat dis-
courses that label aging as a state of biological and social decline. Paulson and Willig (2008) found
that these women’s everyday IPC conversations helped them devise personal, practical strategies to
manage their aging bodies. For example, they talked about planning the day’s activities rather than
staring at their aging bodies in a mirror, or they dressed for comfort and convenience by choosing
long pants rather than shorts because they get chilled more easily as they age (Paulson & Willig,
2008). When they do experience health challenges, older women are willing to share with those
who have similar conditions (Roberto & McCann, 2011). For example, Jones et al. (2018) found
that Black women with hypertension wanted to help others with the same condition, which resulted
in bonding through social networks and communicating to benefit each other. They became great
proponents of peer-to-peer information sharing, feeling like they were most successful when sharing
with those with whom they “spoke the same language” (Jones et al., 2018).

Racial and Ethnic Groups

The everyday IPC practices of U.S. families composed of racial and/or ethnic minority group mem-
bers are often rooted in their diverse cultural backgrounds. Cultural differences can be responsible
for unique communication methods within families (Xu et al., 2017). For example, some cultures
discourage talking about family health history, illnesses, or diseases. In certain cultures personal
conversations must happen indirectly rather than directly, particularly when older generations are
involved (Xu et al., 2017).
Although exhibiting an abundance of caution in maintaining privacy and sharing personal infor-
mation is culturally appropriate for many, it is not the norm for all groups. Perhaps due in part
to their collectivist culture, Filipino families, for example, are usually quite open about sharing

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information with friends (Abad et al., 2017). This feeling of openness could mean lower levels of
stress for Filipino families in certain everyday IPC situations, such as when genetic information
must be shared (Abad et al., 2017). Black American families who decide to help address the critical
shortage of Black organ donors demonstrate that same kind of openness in their discussions. Morgan
(2004) found that successfully encouraging strong family communication in Black families could
help guide donation decisions that would save the lives of others like them.
Cultural factors should play a significant role when examining everyday IPC about health
between parents and adolescents in many racial/ethnic families, as there can be notable differences
in parenting practices and values (Chao & Tseng, 2002). For example, greater emphasis is placed on
respect and obedience in most families of racially and ethnically diverse backgrounds than in white
families, which tend to place higher value on individual independence (Boone, 2015). One major
reason for this is the desire for families of color to keep their children physically safe and “in line”
given the inherent dangers associated with systemic racism, which puts black and brown bodies at
increased risk for harm in public spaces.

Which Topics Are Being Discussed?

The everyday IPC topics that people want to discuss are related not only to illness but also to broad
health duties, desires, and objectives (Young et al., 2001). Many of the conversations are about the
prevention and management of illness. In their study examining Black women with hypertension,
Jones et al. (2018) found that the women supported each other by sharing diet and exercise tips
and also talked about strategies to help with the management of their condition so they could stay
healthy.
Diet and exercise, which have now become high tech and high budget, are officially hot topics
for everyday IPC conversations about health (Zhu et al., 2017). Wearable tech such as Apple watches
and Fitbits, combined with the social media sites with which they often connect, are ubiquitous.
These devices serve as hubs around which health communities are built and where friends, col-
leagues, and family members can urge each other on, boost each other up, and engage in friendly
competition (Epstein et al., 2015). Aside from weight loss and other physical benefits, everyday
IPC talk about healthy diet and exercise is also positively connected to mental/emotional health,
stress, and health behaviors—other major topics of everyday IPC about health. Seo and Matsaganis
(2013) posit that IPC is directly linked to health-enhancing behaviors. For example, performance
of a health behavior motivated by media (TV, print, Internet) is more likely to happen if the health
behavior also is discussed with friends, leading to message reinforcement (Seo & Matsaganis, 2013).
Beyond general fitness and diet, people also focus on a variety of other health topics in their eve-
ryday IPC. Miller-Day and Dodd (2004) conducted a study examining how informal and ongoing
IPC conversations about risk-taking (drugs, alcohol, etc.) served to normalize the topic and make
conversations easier (Miller-Day & Dodd, 2004). Also, likely due at least in part to scientists having
successfully completed mapping the human genome in April 2003 and the corresponding increase
in genetic testing (Phillips et al., 2018), many everyday IPC conversations about health now include
communicating genetic test results and working to understand their meanings. Women who are car-
riers of BRCA1/2 gene mutations can feel high levels of distress when faced with communicating
positive test results to siblings, causing them to make careful choices about whom to tell and when
(Daly et al., 2016). In Filipino households in which a child has been affected with congenital adrenal
hyperplasia (CAH), research has found that the mother acts as the main conduit for information. She
first informs her husband of the diagnosis, then her own mother, and then determines when other
family members are told (Abad et al., 2017). Whether to disclose is an important issue with many
people when processing genetic diagnoses; most people reported that the strongest motivation for
quickly disclosing genetic information was to save someone’s life (Vavolizza et al., 2015).

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How Is Society Sharing Health Information?

The channels and modalities through which everyday IPC conversations about health are happen-
ing are chosen because they fill a specific need for physical or emotional comfort, convenience, or
purpose. Sometimes they are chosen carefully, as with the Black women with hypertension who felt
strongly that their sharing must take place in face-to-face settings (Jones et al., 2018). Somewhat
surprisingly, college students have also expressed a desire to talk about health face-to-face with their
peers (Baxter et al., 2008). However, for some people, and during certain periods in time (such as
during the COVID-19 pandemic), online communication may be preferred or even mandated.
Online health discussions and information-sharing groups are popular, especially when participants
are open and willing to exchange their knowledge with others, as demonstrated in a study of young
people with eating disorders seeking help and support (Kendal et al., 2015). Online social sharing
also permits people to create friendship networks to discuss and compare fitness data (Zhu et al.,
2017) and gather support for helping to control behaviors, manage illness, and adjust physical and
emotional health goals (Chung et al., 2017).
Storytelling, although more accurately described as a method than a channel, is nevertheless
an important conduit of everyday IPC health talk. Like word of mouth, storytelling happens in
all venues, but narration is especially effective at delivering comfort and clarity. Married cou-
ples’ coping skills benefited from collaborative storytelling, which positively affected sensemaking
through providing an opportunity to narrate (and, in doing so, lessen) their stress (Koenig Kellas
et al., 2010). Also, Wilkin et al. (2015) found that engaging a neighborhood storytelling network
to involve community members in improving their health helped to change eating habits and
reduce obesity. Native American (NA) cultures in particular embrace a rich history of storytell-
ing in their everyday IPC as demonstrated by the talking circles wherein NA women gather to
share information and support each other with stories of health and wellness (Cesario, 2001). In
NA tribes, storytelling is used to reshape the way one thinks of disease; for example, the Native
American Diabetes Program incorporated a story as the unifying theme of the program (Carter
et al., 1999).
Everyday IPC conversations about health within families and close social networks are frequent
and ongoing and happen for many reasons. In the next section, we examine some theoretical models
that illuminate some of the motivations for everyday IPC about health and what mechanisms are at
work in how people influence others when engaging in everyday IPC about health.

Influence of IPC on Health Behaviors and Decisions

Beyond the natural everyday conversations that occur in people’s lives, scholars in communica-
tion, psychology, public health, and medicine have long recognized the power of everyday IPC to
actively influence health behaviors and health decisions. In this section, we present three significant
conceptual ideas drawn from established theoretical models that highlight the role of everyday IPC:
diffusion of innovations, the health belief model, and a recent addition to the ecological model of
medical encounters.

The Role and Function of Opinion Leaders

In 1846, Hungarian OB/GYN Dr. Ignaz Semmelweis realized that washing hands before deliver-
ing babies led to fewer infections and deaths among new mothers. Many decades later, after the
process of disinfecting hands was adopted by legendary nurse Florence Nightingale and supported
by germ theory researchers Louis Pasteur and Joseph Lister, hand washing has become an impor-
tant hygienic practice not only in the medical community but also as part of lay people’s everyday

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hygiene practices. Today, parents around the world engage in daily battles with their small children
about washing hands before eating.
The story of Dr. Semmelweis and the medical researchers and practitioners who followed him
exemplifies Everett Rogers’s theoretical model of diffusion of innovation (DOI), which is defined
as “the process by which (1) an innovation (2) is communicated through certain channels (3) over time
(4) among members of a social system” (Rogers, 2003, p. 11, emphasis in the original). Rooted in
this process is not just the importance of communication but also, and especially, the importance
of interpersonal communication. Rogers notes in his preface, “information about an innovation is
often sought from peers, especially . . . subjective evaluations of the innovation” (p. xx). In other
words, although this theoretical model helps us to understand how new ideas, practices, and products
are adopted by populations, the diffusion itself happens through “a social process [which] . . . is com-
municated from person to person” (p. xx). This social process can include teaching others about the
innovation and promoting its use (e.g., parents with their children), as well as subjective evaluations
about adopting or not adopting the behavior (i.e., judging people who never wash their hands after
using a shared public bathroom).
In his DOI model, Rogers (2003) identifies opinion leaders as individuals within a social system
who have the credibility to influence others in adopting the innovation, such as Florence Night-
ingale, the germ theory researchers, and, eventually, people like parents and teachers. Specifically,
Rogers explains, “the most striking characteristic of opinion leaders is their unique and influential
position in their system’s communication structure: they are at the center of interpersonal com-
munication networks” (p. 27). Dearing (2004) adds that opinion leaders’ influence and leadership is
dependent on pre-existing relationships. Importantly, and perhaps more commonly, opinion leaders
in health are not always experts or professionals. People who are popular within a social network
have been found to be effective opinion leaders in promoting safer sex practices (Kelly et al., 1992)
and diffusing multivitamin use in their communities (Boster et al., 2012). In the online context,
opinion leaders in breast cancer support groups were patients who had higher levels of breast cancer
knowledge and optimism in coping (Kim et al., 2017).
Opinion leaders are essential for ensuring adoption of new evidence-based healthcare practices
and products, but they can just as easily play a negative role in diffusion by serving as resisters
(Hietschold, 2020; Leonard-Barton, 1985). Consider the example of the COVID-19 pandemic and
mask wearing. Unlike handwashing, wearing masks to mitigate the spread of a virus is relatively new
to most lay people outside of Asian cultures. According to DOI, opinion leaders therefore may be
particularly important in enhancing or slowing the adoption of this behavior. Some opinion leaders,
like New York Governor Andrew Cuomo or actor Tom Hanks, have sent strong pro-mask mes-
sages, whereas other opinion leaders have refused to wear masks at public events and even spoken
out negatively about using them. DOI provides a framework for understanding that these opinion
leaders play a critical role in diffusing this innovation throughout interpersonal networks. Research
will be needed to show how these opinion leaders influenced acceptance and adoption of mask-
wearing behavior, including the work being undertaken by Quinn (2020) examining the role of
local opinion leaders in improving adoption of mask wearing.

Cueing People to Action Through Interpersonal Messaging

Sometimes it is important to figure out why someone is not engaging in a health behavior. This
was the impetus for the development of a well-known theoretical framework called the health belief
model (HBM). In the 1950s, researchers and practitioners with the U.S. Public Health Service tried
to understand why many healthy individuals were foregoing preventive health behaviors such as TB
testing and polio vaccination (Rosenstock, 1974). This model identified several psychological factors
that influenced adoption of a health behavior, but it also acknowledged an important communication

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variable: cues to action (hereafter, CTA). Early HBM researchers claimed that although CTA could
take many forms (e.g., interpersonal interactions, media, internal cues like a change in body state),
there were “difficulties in attempting to assess interpersonal influences as cues” (Rosenstock, 1974,
p. 333). Interestingly, public health researchers continue to struggle with the idea of measuring and
accounting for interpersonal CTA, as noted by Champion and Skinner (2008): “we know little
about cues to action or their relative impact because this construct has not been identified clearly
in research” (p. 62). In fact, even a meta-analysis of longitudinal studies using HBM variables did
not code for CTA because the authors did not believe that enough studies measured it (Carpenter,
2010).
This is actually incongruent with the plethora of research on HBM, particularly work that relies
on the HBM to inform intervention design, given that most interventions rely on some form of
messaging (or cue) as “strategies for activating ‘readiness’” (Champion & Skinner, 2008, p. 48).
Likely because of the training that communication researchers and practitioners receive, we approach
this research from a message-informed perspective. We have no difficulty in identifying and study-
ing the role of CTA, specifically interpersonal ones, in influencing behaviors. As noted by Jones
et al. (2015), although researchers from other fields often examine CTA as parallel predictors in the
model, “communication researchers are more likely to conceptualize external cues [to action] as the
predictor variable (e.g., campaign exposure)” (p. 5). Therefore, for the purposes of this chapter (and
our own work), we rely heavily on Mattson’s (1999) interpersonal conceptualization of CTA, which
acknowledges:

Individual beliefs, perceptions, and behaviors about health and illness are socially con-
structed and contingent upon interactions with others . . . In addition to influencing
perceptions of the threat of disease in a cursory fashion, communication cues to action
heighten awareness and may influence other health-related perceptions including benefits
of and barriers to the recommended action and self-efficacy.
(p. 258)

In general, interpersonal CTA in health takes one of two forms. First, interventions may pur-
posefully rely on interpersonal cues to encourage behavior. For example, in a multicomponent
injury prevention intervention with adolescents in China, the researchers trained parents in injury
prevention education and encouraged them to lecture their children about injury prevention during
the intervention period (Cao et al., 2014). Second, CTA can come from natural, everyday interac-
tions with individuals in their social networks. Researchers have found, for example, that word of
mouth from friends or colleagues served as a cue to action to take up yoga (Atkinson et al., 2009),
and partners/spouses served as a cue for starting to use a continuous positive airway pressure (CPAP)
machine to address sleep apnea (Olson et al., 2010). In sum, interpersonal CTA are frequent, can be
part of formal interventions or just part of natural interactions, and are an important mechanism for
motivating individuals to act in healthy ways.

Everyday Interpersonal Influences on the Medical Encounter

The everyday IPC about health in which individuals engage not only influences their everyday
health behaviors (e.g., hand washing) but can also influence the communication that they have with
their healthcare providers. An activity done in our undergraduate health communication course
serves as a perfect example of this idea. If you ask students to think about the last time they were sick
and whether they went to see a healthcare provider, most will tell you something along these lines:
“Well, I called my mom first to see what she thought I should do.”

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Street’s (2003) ecological model of medical encounters, featured in the first edition of The Rout-
ledge Handbook of Health Communication, continues to serve as an influential framework for under-
standing how interactions between patients and providers (i.e., the medical encounter) are influenced
by a number of variables and outside contexts. His original conceptualization of the model included
the interpersonal context of the patient and provider, as well as four outside contexts: media, organi-
zational, cultural, and political-legal. However, what was missing from this model was the everyday
IPC people have with friends, family, and peers. Therefore, we published an extension of Street’s
model and argued for the addition of a fifth outside context: everyday IPC (Head & Bute, 2018).
The influence of the everyday IPC on the medical encounter can be seen in three major areas.
First, friends, family, and peers can influence people to seek out healthcare to begin with. For
example, Scott et al. (2019) found that family members, particularly spouses, play a key role in
helping brain cancer patients realize they were experiencing subtle changes in their behavior (e.g.,
shaking hand, numbness, forgetfulness) that necessitated consultation with a healthcare provider.
Second, everyday IPC about health and illness influences what people say and how they say it to
their healthcare providers. In our recent work examining young adult cancer survivors and their
close supporters, one mother explained that caring for her son during his cancer treatment changed
how she communicates with her own providers, including asking more questions and challenging
providers when she disagreed with them (Head & Iannarino, 2019). Third, as examined in other
sections in this chapter, decisions about health are influenced by everyday IPC. For example, young
adult women report that everyday conversations with mothers, sisters, and other female peers about
the importance of preventing cervical cancer played a strong role in their HPV vaccination decisions
at the doctor’s office (Cohen & Head, 2013).
Of all the topic areas we have addressed in this chapter, we believe that the influence of everyday
IPC on what happens in patient-provider encounters is the area that is most ripe for future scholar-
ship. Our field must work to address the gaps in the literature that could better highlight the role of
everyday IPC in influencing medical encounters. Given the extraordinary healthcare utilization in
the United States and other developed countries, the high use of prescription medicines and surgical
treatment options, and the exorbitant costs associated with almost all aspects of healthcare, under-
standing an important but understudied influence on conversations in these medical encounters and
the decisions made during them is essential.
In concluding this section, it is important to acknowledge that the three types of interpersonal
influences described here—opinion leaders, interpersonal cues to action, and everyday interpersonal
influences on the medical encounter—are not dissimilar concepts. Although they originate from
research utilizing different models, all three inherently recognize the role that everyday IPC has on
whether people enact a health behavior. Perhaps most importantly, situating these types of influ-
ences within these models allows us, and researchers outside the field of health communication, to
acknowledge the power of everyday IPC in health. In the next section, we turn our attention to
examining how our everyday IPC about illness and chronic conditions represents an important—
and often challenging—endeavor.

Managing Everyday Communication Work About Illness and Chronic

Conditions
As people go about their lives, they encounter myriad health issues, illnesses, and chronic condi-
tions that they must get properly diagnosed, manage and treat, and, germane to the current chapter,
communicate about with those around them. Everyday talk about health and illness has been con-
ceptualized as a form of communication labor. In this case, the “labor” refers to the work neces-
sary to manage health-related interactions and information alongside identity concerns, relational

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goals and expectations, and the illness itself when patients and their networks are faced with serious
health conditions (Donovan-Kicken et al., 2012; Iannarino, 2018). In their theory of illness trajec-
tories, Corbin and Strauss (1987) first proposed the concept of work to describe the labor involved
in managing chronic or serious illness. They conceptualized three types of work: illness-related
work (e.g., managing medications, monitoring symptoms, attending healthcare appointments), bio-
graphical work (e.g., adapting the illness into one’s life story and sense of identity), and everyday-life
work (e.g., earning an income, managing a household). Donovan-Kicken et al. (2012) proposed
an extension of these three lines of work, maintaining that communication constitutes a distinct
form of work. Although Corbin and Strauss originally conceptualized communication as primarily
a means for accomplishing illness, biographical, and everyday-life work, Donovan-Kicken and col-
leagues’ study of cancer patients revealed that the nature of communicative labor in which patients
and their families engage makes it a separate and uniquely draining line of work. They defined the
labor required for this form of talk as demanding and effortful, characterized by a sense of duty or
obligation to share information about one’s illness, involving preparation and planning, sometimes
typified by a division of tasks between patients and loved ones, and entailing purposeful efforts at
message design (Donovan-Kicken et al., 2012). In brief, communication work involves interacting
with information and with other people and conceptualizes the exertion that people devote to such
work (Love et al., 2013).
Communication work can include a variety of tasks that unfold in everyday IPC, including initial
disclosure of a diagnosis and ongoing discussion of the condition, solicitation or blocking of social sup-
port, and conversations necessary to manage the illness (Bute et al., 2020; Donovan-Kicken et al., 2012;
Iannarino, 2018). This form of everyday IPC is laborious not only because it feels compulsory and
unending but also because communication work involves more than simply conveying information:
Identity and relational goals can collide with communicative expectations in the context of chronic
illness. As Donovan (2019) noted, communication work is highly complex and multifaceted because it
“entails informational, relational, and emotional efforts for which most people are ill-equipped” (p. 238).
Despite this lack of preparation, communication work is an unavoidable part of managing a
chronic health condition and is performed by patients, their partners and family members, and car-
egivers of both adult and pediatric patients (Bute et al., 2020; Donovan-Kicken et al., 2012; Ianna-
rino, 2018). This labor can include revealing a diagnosis, talking about ongoing symptoms, updating
loved ones or responding to inquiries about disease progression, instructing others regarding how to
assist with disease management, and discussing long-term prognosis, treatment plans, and success rates
(Donovan-Kicken et al., 2012; Hintz, 2019). Communication work is challenging not only because
of the effort itself but also because of the emotional toll of such conversations. For instance, discussing
physical symptoms in everyday talk can be draining and embarrassing, such as when patients negotiate
physical intimacy in light of physical pain (Hintz, 2019). Patients might feel a duty to disclose and
inform others while simultaneously feeling the weight of such demands, particularly as they navi-
gate needs to protect others, like their children, from potentially devastating news, while preserving
valued aspects of identity, such as autonomy or a sense of control (Donovan-Kicken et al., 2012;
Robinson et al., 2015). For instance, in the workplace, patients have reported feeling compelled to
reveal their cancer diagnosis, not only to request accommodations but also in everyday conversations
with coworkers as their cancer and its treatment became visible (Robinson et al., 2015). At the same
time, patients aimed to maintain some semblance of control by managing their emotions to appear
steady or by limiting revelations to a select few to maintain an identity as someone who is private.

Managing Privacy
Indeed, privacy management is a significant aspect of communication work (Donovan-Kicken et al.,
2012). Although a great deal of valuable scholarship has used communication privacy management

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(CPM; Petronio, 2002) as a framework for understanding how people manage personal information
about health, expanding this approach by also considering privacy management as an additional
form of communicative labor can illuminate how efforts to manage privacy unfold in everyday IPC
and uncover the toll of such conversations, including preparatory work involved in privacy manage-
ment (Rafferty et al., 2019). Rafferty and colleagues (2019) revealed the burden endured by parents
whose children face serious illness as they manage a child’s private health information alongside the
illness-related work required to coordinate medical care. Research on couples coping with a miscar-
riage points to the work that couples do in coordinating privacy rules with one another in everyday
talk, such as discussing who does and does not know and making collaborative decisions about when
to reveal future pregnancies (Bute & Brann, 2015). Moreover, the “unfinished business” of privacy
management (Bute & Vik, 2010) coalesces with the notion that communication work about health
and illness requires continuing effort. When coping with chronic illness, relational partners engage
in ongoing disclosure conversations (i.e., disclosures that occur after an initial disclosure of a diagno-
sis), and partners’ response patterns (i.e., support, emotional reaction, avoidance, and reciprocity) are
correlated with relational quality (Magsamen-Conrad et al., 2019).

Managing Support
Although revealing one’s illness offers the potential to elicit social support, research using communi-
cation work as a foundation for understanding supportive communication has revealed that relational
partners, parents, and close relatives engage in communication work when serving as gatekeepers
of social support on behalf of patients (Iannarino, 2018; Rafferty et al., 2019). This sort of work
involves correcting or blocking social support that could be unhelpful, or even hurtful, to patients
and families, such as stopping others from posting about the patient on social media, reframing
negative messages, or even preventing access to the patient (Iannarino, 2018; Rafferty et al., 2019).

Managing Identity
Communication work in everyday talk can include efforts to preserve valued aspects of identity, such
as adapting one’s communication to appear as though one is not ill (Martin, 2016), as well as the
burden of “credibility work” (Werner & Malterud, 2003), defined as intentional efforts to present as
a believable and convincing patient. Thompson and her colleagues (Thompson & Duerringer, 2019;
Thompson et al., 2018; Thompson & Parsloe, 2019) have explored situations in which relatives and
relational partners suspect that a patient is “crying wolf,” which compels, or perhaps forces, some
patients to use communication work to persuade loved ones that their health concerns are legitimate.
Thompson and Duerringer (2019) noted that communication work is “particularly demanding and
effortful for those whose suffering may be the greatest and for those who are already doing a great deal
of credibility work to appear as convincing witnesses of their own health” (p. 17), as these patients face
the burden of managing symptoms in such a way as to ensure their believability. Patients with invisible
conditions, such as chronic pain, certain allergies, or mental health challenges, might face additional
labor in legitimating illnesses in which bodily symptoms and physical changes are not readily apparent
(Bute et al., 2020; Thompson et al., 2018). Credibility work in everyday IPC is also tied to assump-
tions about gender and race, such that women, and particularly Black women, face additional barriers
in working to be viewed as credible patients (Pryma, 2017; Thompson & Duerringer, 2019).

Managing Work in Families

Pediatric health challenges fundamentally (re)shape everyday communication in families (Rafferty
et al., 2019). Families use communication work as a form of identity management for the family

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unit, and, depending on the disease context, the communication work itself can be a required aspect
of illness work. In their research on family communication after a child’s autism spectrum disorder
(ASD) diagnosis, Hays and Colaner (2016) found that families’ daily conversations are an important
site of discursive work that shapes perceptions of family identity both within the boundaries of the
family and externally to others. Use of the term “autism,” ongoing family discussions, and storytell-
ing are among the internal patterns of talk that help families normalize and adjust after a diagnosis.
Moreover, everyday talk with those outside the family helps families explain a child’s behaviors and
educate people about ASD (Hays & Colaner, 2016). In the context of life-threatening food aller-
gies, everyday talk among family members is an essential aspect not just of communication work
but of illness work as well (Bute et al., 2020). Discussing meal planning, grocery shopping, dining
out, and family events is necessary to avoid food-induced reactions. In fact, the bulk of disease
management in the food allergy context involves communication work in mundane conversations.
For instance, parents of children with food allergies have reported the burden of asking about
ingredients; deciphering food labels; ensuring that utensils, cookware, and plates have not been
contaminated with an allergen; and instructing nonparental caregivers how to keep a food-allergic
child safe (Bute et al., 2020).

Managing Masspersonal Communication

Everyday IPC about health can also unfold in mediated contexts, including what scholars deem
“masspersonal” communication (O’Sullivan & Carr, 2018) in which interactants communicate
person to person in contexts available to mass publics, like online forums (Love & Donovan,
2013). Such interactions illustrate the effort involved in using multiple platforms or technologies
to manage health-related IPC. Moreover, patients have reported using communication technology
or masspersonal interactions to engage in message preparation in anticipation of face-to-face con-
versations (Love & Donovan, 2013; Love et al., 2013). For example, young adult cancer patients
coping with bodies that have changed after cancer treatment have reported seeking advice online
to prepare for face-to-face conversations with friends and family about food choices, nutrition,
and dietary restrictions, demonstrating the conversational planning involved in everyday IPC (Love
et al., 2013).

Managing Dilemmas of Communication Work

Finally, everyday conversations about health can pose dilemmas in that talking about illness, while
often necessary, can serve as an unwelcome reminder of the specter of illness and can prompt a
sense of futility. Couples in which one member had experienced a cardiac event described working
to actively avoid illness talk in daily conversations in order to remove the reminder that their lives
had changed significantly (Goldsmith et al., 2006). Similarly, research on the social experiences of
older women coping with chronic illness revealed that women described their families as generally
supportive, yet they did not discuss their health regularly with relatives because, as one woman put
it, “what good would it do?” (Roberto & McCann, 2011, p. 98). And parents of children with
food allergies expressed feelings of futility when trying to legitimate food allergies as a potentially
life-threatening condition, resigning themselves to the fact that some people would just never fully
understand or validate the disease (Bute et al., 2020).
In sum, a wealth of research suggests the important role of everyday IPC about health, including
its role in coping with and managing health challenges. However, the communication work lens
reminds us that such effortful conversations are not without costs, including the burden and fatigue
that can accompany such work.

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Everyday IPC About Health and Illness: Concluding Thoughts

In this chapter, we reviewed a wide range of research, concepts, and theoretical models that highlighted
the pervasiveness of everyday IPC about health and illness. Our hope was to bring together seemingly
disparate areas of health communication under the umbrella of everyday IPC about health and illness
as a way for readers to see the vast amount of research on this topic and to better understand how it
all connects. This chapter also demonstrates the role of everyday IPC in affecting all aspects of health,
from managing health and wellness in everyday lives to the influential role of everyday IPC in health
decisions to the communication labor that is enacted when living with illness and chronic disease.
The brief review of distinct but related areas of literature presented in this chapter reveals that
everyday IPC about health and illness is ubiquitous. Despite this, there remain ample areas for future
work exploring this phenomenon. One key area will be a continued and evolving focus on com-
munication about genetics given the central role of biological family relationships within this health
topic. As more genetics-focused biomedical research emerges and is combined with the increasing
capabilities of public-facing genetic testing companies like 23andMe, examining how families discuss
and manage genetic information will be an important area of communication scholarship. Another
area ripe for research is a more nuanced examination of how communication technology facilitates
everyday IPC about health. Although a growing body of literature shows how health information
is exchanged on social media platforms, less is known about the role of text messaging, email, and
teleconference technologies like Zoom or FaceTime. Finally, more attention must be paid to the
role of cultural background as a backdrop for the ways in which families and social networks com-
municate about health. We call for health communication scholars to consider the role(s) that one’s
cultural background (e.g., race, ethnicity, gender, sexuality, religion, political ideology, and more)
plays in all interpersonal conversations about health, rather than seeing culture as single variable or
even a separate sub-area of research from health communication.
Health, wellness, illness, theory, interpersonal communication. Separately, each is important. By
putting them all together and exploring how people’s everyday interactions with those around them
influence their health, the discipline of health communication will continue to draw attention to the
important role of everyday interpersonal communication about health.

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 SECTION III

Patient-Provider Communication
 12
MUTUAL PERSUASION
AS PATIENT-CENTERED
COMMUNICATION
Jennifer Freytag and Richard L. Street, Jr.

Patient-centered care is an approach to medicine in which care is influenced not only by scientific
evidence but also by patient preferences, goals, and needs (Epstein & Street, 2007). Patient-centered
care can be traced to early models of medical care that take into account individual patient qualities.
One of the most influential is Engel’s biopsychosocial model, which posits that clinicians must attend
to the biological, psychological, and social dimensions of a patient’s illness experience to provide
adequate care (Borrell-Carrió et al., 2004). Subsequently, Crossing the Quality Chasm, a 2001 report
from the Institute of Medicine focused on quality improvement standards for healthcare, described
patient-centered care as a partnership between patients and clinicians in which patients’ needs, goals,
preferences, and values guide medical decisions. More recently, a systematic review by Langberg
et al. (2019) that builds on work by Mead and Bower (2000) concluded that patient-centered care
involves five dimensions—attending to biopsychosocial aspects of health, knowing the patient-as-
person, sharing power and responsibility, creating a therapeutic alliance, and coordinating patient
care (Langberg et al., 2019).
Patient-centered communication (PCC) is required to accomplish the goals of patient-centered care
(Street, 2019). Epstein and Street (2007) have defined the core concepts of PCC to include (a) elicit-
ing and understanding patient perspectives, (b) understanding the patient within his or her unique
psychosocial and cultural contexts, and (c) reaching a shared understanding of patient problems
and treatments that are concordant with patient values. Based on these core concepts, the “work”
communication must do, and must do well, includes effectively exchanging information, fostering
healing relationships, responding to emotions, making quality decisions, managing uncertainty, and
enabling self-care (Epstein & Street, 2007).
The “work” of PCC has been operationalized in many ways. Measures of PCC have included the
amount of talk by patient and clinician during an encounter (Agha et al., 2009), patient reports of
clinicians’ rapport-building talk (Street et al., 2007), and observed clinician communicative behav-
iors aimed at understanding the patient’s perspective (Stewart et al., 2000). Although these measures
focus on elements of PCC, they all measure different constructs that have not been fit into a cohesive
model.
Street (2017) argues that a cohesive model of PCC should be grounded in three ontological
assumptions. First, PCC necessarily involves both patient and clinician communication during clinical
interactions. It cannot occur when only a clinician or a patient is engaged in the interaction—both
must participate. Second, PCC can be characterized as both a process and an outcome. That is, PCC
can be measured by what patients and clinicians do during an interaction (i.e., a communication

DOI: 10.4324/9781003043379-15 165

 Jennifer Freytag and Richard L. Street, Jr.

process) and whether patient and clinician have an interaction that exemplifies elements of PCC (i.e.,
an outcome of the visit shows PCC occurred). Third, PCC can also be characterized as both behav-
ior and judgment. For example, a research objective might involve observing clinicians’ strategies for
actively involving patients in interactions (i.e., what they do during the interaction to facilitate PCC).
Another approach might involve assessing patients’ perceptions of whether clinicians used strategies
to achieve active patient involvement (i.e., patients’ assessment of how well PCC was performed).
On the basis of these assumptions, Street (2017) advocated for a model that takes a multidimen-
sional approach to PCC. In it, the goals of patient-centered care are accomplished by communi-
cation that (a) reveals the patient’s perspective, including their beliefs, preferences, and needs, (b)
explores the biopsychosocial context of the patient’s health and well-being, (c) creates or reinforces
trust and mutual respect in the clinician-patient relationship, (d) includes explanations of disease and
treatment options in ways the patient understands, (e) encourages patients to actively participate in
the conversation and decision-making process, (f) creates shared understanding of the problem and
courses of action, and (g) produces decisions that are based on the evidence, consistent with the
patient’s values, and feasible to implement.

The Role of Influence in Patient-Centered Communication

A fundamental concept that underlies this multidimensional approach to PCC is influence: In PCC,
clinicians and patients are communicating to influence one another’s thinking, feeling, and action.
The clinician tries to influence the patient’s understanding (e.g., knowledge of health status, risks
and benefits of treatment, treatments most supported by science, the value of preventive behaviors),
emotion and motivation (e.g., commitment to treatment plan, confidence), and behavior (e.g.,
screening for disease, taking medications appropriately, making lifestyle changes, following through
on treatment; Duggan & Bradshaw, 2008; Ong et al., 2003). The patient also tries to influence the
clinician’s understanding (e.g., the patient’s health-related preferences, concerns, and informational
needs), emotion (e.g., empathy, sympathy), and behavior (e.g., accommodating patient requests,
advocating for patient’s access to specialists, supporting patient involvement in decision-making;
Cegala & Post, 2009; Lambert et al., 1997).
When PCC occurs, patients as communicators have the opportunity, if chosen, to actively advo-
cate for desired courses of treatment, assert their goals or wishes for their care, and even tailor or
withhold information so that they may receive a desired diagnosis, procedure, or treatment (Entwistle
et al., 2010; Krupat et al., 1999; Street et al., 2005). To the extent that clinical conversations involve
patients and clinicians simultaneously exerting their influence, clinical conversations can be consid-
ered exercises in mutual persuasion.
In this chapter, we examine the role of mutual persuasion in PCC. At first read, this may sound
like an oxymoron. We tend to think of persuasion as one person trying to influence another—some-
thing an individual does, not something “mutual.” Additionally, to claim the clinical encounter is
an exercise in mutual persuasion might strike some as unhelpful because it complicates questions of
when and how each participant’s persuasive communicative behaviors are “good” or “bad,” ethical
or unethical (Barton & Eggly, 2009; Rubinelli, 2013).
Persuasion in clinical encounters might bring to mind the influence clinicians have over patients
due to their expertise and power in the relationship as a “healthcare provider” coupled with the
patient’s position as a “help seeker.” At one extreme, a patient’s autonomy is compromised; perhaps
they are strong-armed into an aggressive, expensive, and painful treatment, or they are misled by an
overly pessimistic prognosis (Shaw & Elger, 2013). At the other end, a beneficent clinician nudges
patients away from bad habits or strongly recommends a treatment justified by evidence (Gold &
Lichtenberg, 2012).

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Because of differences in clinician-patient roles as help providers and help seekers, each inter-
actant may exert different degrees of influence during an interaction (i.e., the patient having less
influence). However, clinical encounters, like most social interactions, are nonetheless processes of
mutual influence that involve both parties. The communicative actions of one interactant affect the
other interactant’s subsequent responses (Street, 2003).
In a clinician-patient relationship that accomplishes the goals of patient-centered care, such as
making collaborative decisions, both patient and clinician advocate for their perspective, as well as
their goals and values; hence, communication in medical encounters can be characterized as mutual
persuasion. In this chapter, we first make a distinction between individual and mutual influence. We
then discuss two important outcomes of PCC, shared decision-making and relational autonomy,
using a mutual persuasion perspective. Finally, we discuss the role of mutual persuasion in ultimately
achieving shared mind.

Persuasion in Clinical Encounters as Individual Influence

Persuasion as individual influence is used to model influence in a variety of health contexts, most nota-
bly public health campaigns where some form of messaging is sent to a target population in an effort
to get them to engage in a particular, healthier behavior, such as avoiding smoking (Carter et al.,
2011; Rossi & Yudell, 2012; see also Chapter 23, this volume). In this case, it is clear that persuasion
is a deliberate effort to use influence to change another’s beliefs, attitudes, or behavior (Cameron,
2009). O’Keefe (2004) has argued that this type of persuasive communication, at its simplest, is
intended to change the attitudes and mental states of others.
Persuasive strategies might be used by a clinician to present new information (e.g., describing the
benefits of a new weight loss treatment), to support a decision (e.g., recommending a support group
to help a motivated patient manage weight), or to change a belief (e.g., convincing a parent to vac-
cinate their child; Cameron, 2009). Likewise, a patient might intend to persuade by presenting new
information (e.g., describing a side effect of an unwanted medication), supporting a decision (e.g.,
describing how helpful a medication is in treating a condition), or changing a belief (e.g., convincing
a clinician that he or she is exercising regularly).
In a medical encounter, persuasion as individual influence may appear, at first glance, to be an
appropriate model (see Figure 12.1). For example, clinicians recommending to patients health-
promoting actions that they “should” do is commonplace (e.g., get vaccinations or take blood pres-
sure medication). In these cases, clinicians are using their expertise to do something good for the
patient—persuasion reflects the clinician’s beneficence (Swindell et al., 2010). This view is focused
on persuasion as a clinician’s individual persuasive strategies. It does not take into account how the
clinician will adapt his or her communication in light of the patient’s response to the persuasive
attempt.
Similarly, a patient will often try to persuade a clinician to adopt a certain belief (e.g., moderately
elevated blood pressure is not a concern) or take certain actions (e.g., prescribe an antibiotic, order
an MRI, provide a work release note). This way of thinking about persuasion also does not take
into account how the patient will adapt his or her message given how the clinician responds to the
persuasive attempt.

Mutual Persuasion as Patient-Centered Communication

The persuasive efforts of clinicians and patients ideally unfold in a collaborative manner. Smith and
Pettigrew (1986) argue that this collaboration represents mutual persuasion and is inherent in patient-
clinician discourse. In other words, for patients and clinicians to engage in discourse, both must be

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 Jennifer Freytag and Richard L. Street, Jr.

Clinician Patient

Persuading patient to:

• Adhere to medication schedule

• Accept diagnosis
• Quit smoking
• Exercise more
• Change diet
• Schedule a colonoscopy

Clinician Patient

Persuading clinician to:

• Grant requested medications (e.g., antibiotics, opioids)

• Grant requested procedures (e.g., MRI)
• Approve of alternative or complementary therapies
• Accept patient’s beliefs about diagnosis and health status

Figure 12.1 Unilateral persuasion

involved in the process of mutually persuading one another. Each must have a willingness to per-
suade and, importantly, to be persuaded by the other during clinical encounters.
Conceptually, mutual persuasion reflects the nature of the interaction during a clinical encounter.
Sender and receiver perform both roles as they move the interaction forward through their respec-
tive turn-taking (Duggan & Bradshaw, 2008; Orth et al., 1987). During their turns, the two assert
mutual influence as each adapts their response to the other’s contribution to the conversation (Dug-
gan & Bradshaw, 2008; Street, 1992).
When participants intend to alter one another’s way of thinking, they engage in persuasive tactics.
Considering medical encounters as exercises in mutual persuasion, then, reflects the way individuals
respond to one another’s persuasive strategies and alter their own strategies in response. This per-
spective contrasts with the individual persuasion perspective, which treats the relationship between
clinician and patient as oppositional, as though each party needs to be persuaded because their per-
spectives are at odds with one another.

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Clinician Patient

Clinician and patient communicate to:

• Affirm common ground
• Acknowledge and reconcile differences and preferences
• Negotiate
• Achieve shared understanding and agreement
• Reach a shared decision

Figure 12.2 Mutual persuasion

The core principles of patient-centered communication (PCC) incorporate communication pro-

cesses that involve mutual persuasion (see Figure 12.2). For example, “involving patients in their care
to the extent they want or need to be” could include persuasive efforts on the part of the patient to
take a prominent role in decisions about his or her care (e.g., whether to have surgery or watchful
waiting).

The Case of Mrs. Johnson

Consider, for example, a case in which Mrs. Johnson has ductal carcinoma in situ (DCIS), a form of
breast cancer that is considered to be non-invasive. Her oncologist, Dr. Nathan, presents her with
two treatment options: She can do watchful waiting in which she gets regular checkups and her
doctor does not take action unless her condition changes, or she can have an aggressive treatment,
such as radiation or surgery. Mrs. Johnson immediately expresses her desire to have surgery because
it offers the promise of a “cure.” She says she wants surgery so that she does not have to think about
cancer or worry about eventually having it. Dr. Nathan tells her that radiation and surgery often
cause more worry because of side effects and possible complications, and he would not recom-
mend it. He cites evidence that surgery is not advisable and tells the story of a patient who felt the
same as Mrs. Johnson, had surgery, and regretted her choice. As the two continue their discussion,
Mrs. Johnson reveals that invasive breast cancer runs in her family, she is firm in her decision, and she
is willing to risk having similar regrets. Dr. Nathan says he sees many women with family histories of
cancer who decide to forgo the surgery, but the choice is ultimately Mrs. Johnson’s.
In this example, patient and clinician each use persuasive strategies to assert their point of
view. Mrs. Johnson provides her reasons for her decision, adjusting her reasoning to respond to
Dr. Nathan’s reasons that the surgery is not advisable, and vice versa. Mrs. Johnson’s reasoning is
emotional and based on her family history, whereas Dr. Nathan offers a combination of medical
evidence and anecdote. No matter the perceived quality of each interactant’s argument or evidence,
both attempted to persuade the other and adapted their arguments to respond to the other person.

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 Jennifer Freytag and Richard L. Street, Jr.

Importantly, mutual persuasion does not necessarily result in a mutually acceptable decision, but
PCC can still be said to occur. In fact, attempts at mutual persuasion would have occurred even if
Dr. Nathan respected Mrs. Johnson’s decision and understood her reasoning but refused to perform
the surgery. He may have referred Mrs. Johnson to another oncologist who felt more comfortable
honoring her wishes. Despite the outcome of the interaction, both patient and clinician would have
used persuasive strategies and altered their message to respond to the other’s.
Additionally, as discussed previously, patients and clinicians are not necessarily matched in their
ability to persuade. Although Mrs. Johnson asserted her decision-making ability, her strategies
might be judged less persuasive than Dr. Nathan’s. Finally, it is important to note that a patient can
assert a desire to defer decision-making (Levinson et al., 2000). This scenario could have involved
Mrs. Johnson asserting that she wanted Dr. Nathan to make the decision for her because he knows
the evidence best.

Mutual Persuasion as Shared Decision-Making in PCC

Although it might sound counterintuitive, mutual persuasion is present in shared decision-making.
The nature of medical decision-making is more than cognitive; it is social (Street, 2007). Shared
decision-making (SDM) between clinician and patient is a collaborative process intended to produce
high-quality medical decisions. The quality of a decision may be judged by the decision produced.
However, scholars of SDM have adopted a perspective that focuses on the process of making the
decision (Elwyn et al., 2000; Epstein & Street, 2007; Sepucha et al., 2007). Using this approach,
quality medical decisions (a) are based on the best clinical evidence, (b) incorporate the patient’s
values and preferences, (c) involve the patient in the decision-making process to the extent that the
patient wants or needs to be, and (d) are feasible to implement. Viewing SDM as a process makes
clear that the process involves mutual persuasion.

Quality Decisions
The physician’s role in SDM is to help patients become informed of their medical options, give
guidance when needed, and articulate their preferences (Elwyn et al., 2014). Scholarship focused
on patient decision-making often examines the role of physicians in influencing (or trying to avoid
influencing) patient decision-making (Karnieli-Miller & Eisikovits, 2009; Shay & Lafata, 2015).
However, collaborative decision-making involves clinicians asserting their recommendations, exper-
tise, and perspectives (Jacobsen et al., 2018). When a clinician attempts to persuade a patient using
persuasive strategies that support their perspective, they may be met with resistance from a patient.
In Mrs. Johnson’s case, Dr. Nathan asserted that evidence supported a watchful waiting approach and
used anecdotal evidence to persuade Mrs. Johnson to forgo surgery. He was met with resistance from
Mrs. Johnson. In this case, each tried to persuade the other by asserting their perspectives.
Although both Mrs. Johnson and Dr. Nathan attempted to persuade one another of the “right”
course of action, Mrs. Johnson was at a disadvantage in her knowledge of the options. Thus, truly
collaborative decisions are difficult to make considering the imbalances in patient and clinician power
within the medical encounter (Eggly, 2009). The imbalance of power in a decision-making context
often refers to a patient’s lack of health literacy, their diminished role within the healthcare system, or
their preference for clinician-led decision-making (Rubinelli, 2013; Street et al., 2003). Addition-
ally, SDM literature focuses on a clinician’s ultimate duty to act in the best interest of their patient
and in the most extreme cases (e.g., discontinuing futile treatment) have the final say (Epstein &
Entwistle, 2014).
Higher quality decisions are made using the best available medical evidence, and mutual persua-
sion in decision-making often involves the presentation of medical evidence (Politi & Street, 2010).

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During clinical encounters, clinicians who are able to support their recommendations with evidence
are perceived to be more credible and more participatory in decision-making (Labrie & Schulz,
2015). However, problems arise when evidence is so complicated that it is difficult for a layperson to
understand. In that case, clinicians might use interpretive techniques such as helpful metaphors and
graphic representations (Carter et al., 2011).
For example, statistics are often challenging to convey meaningfully, particularly those related to
prognosis (e.g., a 40% chance of cancer recurrence). Studies suggest patients have a preference for
framing statistics positively (e.g., a 60% chance of staying in remission; Hagerty et al., 2005). An
additional problem is when analytical evidence conflicts with narrative or anecdotal evidence the
patient possesses (Winterbottom et al., 2008). Evidence can also be scarce, be uncertain, or fail to
favor one treatment over another (Street et al., 2009).
The responsibility for presenting evidence largely falls on the clinician because their specialized
knowledge is needed to present and interpret it. Thus, clinicians like Dr. Nathan are at an advantage,
with more evidence to use to persuade patients. However, the patient and clinician’s mutual act of
considering evidence also involves persuasion on the part of the patient. First, patients do seek health
information from outside sources, so it is possible for a patient to present the information they have
found on their own to their clinician in an effort to persuade (Tan & Goonawardene, 2017). More
importantly, though, patients possess a great deal of agency in weighing evidence presented by their
clinician. In other words, patients are free to pick and choose what they find most persuasive. Their
choices often reflect emotions, as well as logic (Epstein, 2013). A patient may value anecdotal over
analytical evidence, for example. Mrs. Johnson’s decision-making was influenced by the experi-
ence of a family member she cares about, and Mrs. Johnson may never have been persuaded by
Dr. Nathan to use watchful waiting.
Considering patient values and preferences is also part of making high-quality decisions that ide-
ally incorporate mutual persuasion. However, clinicians are often not aware of what is most impor-
tant to patients. Patient values, needs, and preferences guide a patient’s use of persuasive strategies.
Patient values often fall into distinct categories, including spending time with others, enjoying hob-
bies or learning activities, managing health, and being independent (Naik et al., 2016). These values
inform the goals patients have for their health (e.g., I want to stay mobile so I can play with my
grandchildren) and their preferences for their healthcare (e.g., I won’t take that medicine because of
the side effects). However, clinicians often do not discuss patient values, goals, and preferences when
making decisions, which can negatively affect the quality of medical decision-making.
These are aspects of collaborative decision-making that many clinicians are not accustomed to
and do not discuss during clinical encounters (Fried et al., 2008). Some decisions are more prefer-
ence-sensitive than others, particularly when each option has benefits and drawbacks (Llewellyn-
Thomas & Crump, 2013). Mrs. Johnson’s case presents an example of a preference-sensitive choice.
Watchful waiting and more aggressive treatments were both options. In this case, it might have been
helpful for Dr. Nathan to carefully elicit the values, preferences, and needs driving Mrs. Johnson’s
decision in order to persuade her to do watchful waiting.

Shared Understanding and Explaining Options

For mutual persuasion to be accomplished, SDM must follow principles of establishing shared
understanding. These principles include the following: information is effectively exchanged between
patient and clinician, patient perspectives are elicited and valued, patient emotions are responded
to, and patients are activated to become part of their care (Epstein et al., 2005). Shared understand-
ing means that patients and clinicians can see one another’s point of view, share their beliefs, and
understand one another’s values and preferences (Street et al., 2009). The challenge to creating
shared understanding is that patients and clinicians have different experiences, interpret information

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in different ways, respond differently to situations, and enter the clinical encounter with different
values and beliefs regarding healthcare (Politi & Street, 2011).
Conversations between patients and clinicians involve sharing different types of information.
Research has focused on clinicians making complex information accessible to patients, such as the
risk and benefits of treatment options, describing illnesses with unclear etiologies, and explaining
prognosis. The focus is often on the clinician collecting and communicating biomedical information
(Fried et al., 2003; Hagerty et al., 2005). Patients, in turn, are expected to provide enough informa-
tion to make a diagnosis and for tailoring treatment plans.
Mutual persuasion in information exchange is driven by what clinician and patient think the
other “needs to know,” be it about a lab result, diagnosis, health concern, medical procedure, prefer-
ence, work or family situation, and so on. Viewing clinical encounters as a product of mutual influ-
ence focuses instead on the process of information exchange. Both clinicians and patients contribute
to the information shared during the encounter. This is not to say they share the same perspective,
literacy, or cognitive framework for understanding the personal and medical information that con-
tributes to healthcare. Instead, a process model focuses on the patient’s and clinician’s shared under-
standing of the information provided by both patient and clinician (Charles et al., 1997).
From this perspective, patients and clinicians deliberately provide information that is of equal
value to the persuasive tactics each implements over the course of the interaction. Although cli-
nicians have medical knowledge patients likely do not have, patients’ knowledge of their illness
experience influences the interaction in a way that is just as valuable (Smith & Pettigrew, 1986). For
example, patients’ stories about their experiences—their health narratives—reveal important psy-
chosocial information and are just as persuasive, if not more powerful (Gordon et al., 2006; see also
Chapter 4, this volume, on health narratives). In Mrs. Johnson’s case, her family experiences drove
her decision-making despite Dr. Nathan’s attempt to convince her using medical evidence.

Active Participation
Collaborative relationships are developed through active patient participation in clinical encounters.
Patients’ active behaviors include asking questions (Why do I have to take an antibiotic for ten days?),
being assertive (I don’t want to take that medication), and expressing concerns (I am worried about
cost of that procedure; Street, 1992). Clinicians, in turn, respond to patients through partnership
building (We’re going to make this decision together) and supportive talk (Your concerns about
this treatment are important). Active communicative behaviors are the mechanisms through which
patient and clinician exercise their mutual influence (Duggan & Bradshaw, 2008; Street, 1992).
Active patient behaviors tend to prompt a response from clinicians. These behaviors will look and
sound different based on participants’ relative communication preferences (e.g., preferring more or
less talk), their self-awareness (e.g., gauging one’s dominance during the conversation), and their
communicative style (e.g., taking care not to interrupt the other participant; Street et al., 2005).
Mutual persuasion by definition involves active participation in an interaction because it is delib-
erately asserting one’s influence in the interaction. Active patient communicative behaviors and
clinician responses, then, are the behaviors through which interactants practice mutual influence.
A mutual persuasion perspective contributes to a model of active patient participation in that it
offers an alternative way to explain how and why participants may actively participate in clinical
encounters.

Mutual Persuasion as Relational Autonomy in PCC

Relational autonomy is a reconceptualization of patient autonomy that takes into account the social
processes through which individuals assert preferences (Dove et al., 2017; Walter & Ross, 2014).

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Relational autonomy posits that individuals’ unique perspectives or desires are influenced by their
relationships to others. Unlike traditional ideas of autonomy that value patients making decisions
completely independently, without the input of others, relational autonomy argues that an indi-
vidual cannot make decisions outside of a social context (Epstein, 2013; Epstein & Street, 2011).
Thus, others are necessarily involved in individual decision-making. At first blush, Mrs. Johnson’s
case appears to be a clean-cut example of autonomous decision-making. She made up her mind
that she wanted surgery, despite evidence that watchful waiting might be a safer alternative. How-
ever, relational autonomy takes into account the social aspects of her decision, including her and
Dr. Nathan’s attempts to persuade one another that each of their preferences was the better option.
This interaction may not have changed her views but may have strengthened them and bolstered her
confidence in her decision.
As Epstein (2013) has noted, drawing theoretical boundaries around a patient’s autonomy may
mean subscribing to a limited, and ultimately inaccurate, definition of what it means for a patient
to exercise their decision-making power. For example, a patient might bring a companion to their
visit who repeatedly offers an unsolicited opinion on a treatment option during a clinical encoun-
ter, exclaiming that the option is a bad one and “just not right for us.” One might conclude the
companion has infringed on or even disabled the patient’s autonomy by vehemently sharing their
own opinion. But Epstein and others have argued that the exercise of autonomy is nuanced and
deeply influenced by culture, beliefs, and contextual factors (Epstein, 2013; Epstein & Street, 2011;
Laidsaar-Powell et al., 2016). Making space for the companion’s input can be a function of a patient’s
exercising their autonomy; the patient may have a preference for their companion making health-
care decisions. In this sense, a patient still engages in mutual persuasion by choosing to share their
decision-making power. The influence of a companion on autonomous decision-making may also
be less direct. A patient may depend on a companion’s ability to communicate with a clinician
(e.g., a companion must translate or accommodate a patient’s hearing impairment). Under those
circumstances, a companion’s involvement in communication between the patient and clinician will
influence the way decisions are made.

Revealing the Patient’s Perspective

An important element of mutual persuasion in this context is appreciating and elucidating the
patient’s perspective. One element that is particularly challenging for clinicians is acknowledging
and responding to patient emotions. Much of decision-making on the part of both patients and
clinicians is driven at least in part by emotions (Weilenmann et al., 2018). Emotions are often not
expressed directly and can be conveyed in an indirect way verbally or through nonverbal behaviors
(Levinson et al., 2000). Patients’ verbal expressions of negative emotions, in particular, tend to cause
discomfort among clinicians because they represent a loss of control of the interaction (Patel et al.,
2019). Clinicians also often attempt to suppress or hide their own emotions during clinical encoun-
ters (Weilenmann et al., 2018).
Even though patient and clinician decision-making involves emotion, it is often considered a
poor persuasive tactic. Much of the literature on persuasion during medical encounters focuses
on rational influence and reasoned decision-making as the most ethical and “right” way to discuss
healthcare (Rubinelli, 2013). However, healthcare preferences are often influenced, at least in part,
by emotion. To understand both Mrs. Johnson’s and Dr. Nathan’s perspectives and persuasive strate-
gies, it is important to identify the emotional elements of each of their perspectives. Mrs. Johnson
argued that she wanted surgery because her family had risk factors for breast cancer; in doing so, she
indicated that she was afraid to do watchful waiting. Dr. Nathan also told a story of a patient who
received the surgery and regretted it. In telling the story, he indicated that he was troubled by his
other patient’s bad experience.

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Exploring the Biopsychosocial

Taking into account a patient’s experience of the world in addition to their illness experience is a
fundamental component of PCC. A biopsychosocial approach considers the patient’s health status,
as well as other factors, such as their living circumstances, their social functioning, the psycho-
logical effects of their illness, and other characteristics that shape their experience of the world
(Borrell-Carrió et al., 2004). Including biopsychosocial factors in treatment plans helps tailor care
to a patient’s lifestyle and other circumstances outside of the clinic. A patient who did not take her
medication might be considered noncompliant, but a biopsychosocial approach would ask if there
were reasons outside of the clinic why the patient did not take her medication, such as no transporta-
tion to the pharmacy or a side effect that limited her ability to work. Thus, a clinician should ask for
reasons why a patient does not adhere to treatment and respond to those reasons.
The biopsychosocial approach focuses on the patient’s lived experience and treats the patient’s
knowledge of their own circumstances as expertise that is equal to a clinician’s expertise (Lambert
et al., 1997). In Mrs. Johnson’s case, for example, she used her family history to argue in favor of
surgery—she was afraid that she would have invasive breast cancer like other women in her family.
Knowing this information allows the clinician to adjust his persuasive strategies and tailor subsequent
messages to address her fears. The biopsychosocial approach also helps patients connect over shared
experiences outside of the clinic, develop rapport, and better understand their own preferences
(Epstein & Street, 2007). This information is also useful for negotiating treatment plans, making
mutually informed decisions, and coming to a shared understanding of the persuasive context.

Creating Trust and Mutual Respect

Trust and mutual respect contribute to the ethos of each participant in a persuasive act. Trust is a
key element in developing patient-clinician relationships (Berrios-Rivera et al., 2006). In order to
develop rapport and respect, trust must be mutual (Fiscella et al., 2004). Trust can help alleviate
anxiety and enhance patient involvement in decision-making (Dang et al., 2017). Patient-clinician
discourse is limited when there is a lack of trust between patient and clinician. A clinician might
ask a patient whether she is taking her medication only to disregard her answer if the clinician
feels she is lying. Likewise, a patient is less likely to express concerns when she believes a clinician
is biased toward a treatment for no apparent reason. Trust and mutual respect are also essential for
mutual persuasion. Trust allows interactants to actively present their perspectives and respond to
one another honestly. Without trust, mutual persuasion is colored by possible misrepresentation and
misinformation.

Toward Shared Mind

An important goal of PCC is that patients and clinicians arrive at shared mind (Epstein et al., 2009).
Shared mind is a state in which patients and clinicians possess a shared understanding of the patient’s
health, understand each other’s perspective, agree on the best treatment option, and are “in sync”
with one another’s feelings (Epstein & Street, 2011). To achieve shared mind, patients and clinicians
must negotiate differences in their knowledge and perspectives (Epstein & Street, 2007). Ideally,
when they come to shared understanding and make collaborative decisions, they achieve equipoise
in their mutual influence. In other words, mutual persuasion has led to mutuality in thought pro-
cesses, influences, and mental models.
Mutual mental processes are shared by two individuals; neither can lay claim to the result. New
ideas generated by sharing thoughts and feelings and by aligning mutual influence belong to the
collective (i.e., the shared mind). Achieving shared mind involves several strategies for aligning

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influence, including jointly narrating the decision process (e.g., as we think through this decision,
let’s focus on your concerns), identifying outside influences on the decision to be made (e.g., who
in your life will this decision impact), and aligning mental models (e.g., let’s talk about the trajectory
of this illness and the importance of this decision).
Mrs. Johnson and Dr. Nathan did not arrive at shared mind, but their case shows how mutual
persuasion is a means to achieving shared mind. If Dr. Nathan had helped Mrs. Johnson articu-
late her concerns about her family history and how they factored into her treatment decision, if
Mrs. Johnson had asked specific questions about the trajectory of the illness to better understand the
impact of watchful waiting, or if both had expressed their emotions in explicit terms, their interac-
tion might have resulted in a meeting of the minds. A mutual persuasion perspective on the interac-
tion helps identify how they could have reached shared mind.

Future Directions
We have presented mutual persuasion as way of rethinking PCC that emphasizes the relational
dynamics of a clinical interaction. A mutual persuasion perspective benefits the study of PCC in
several ways. First, it emphasizes the agency of providers and patients, in particular. Each enters a
clinical interaction as both “persuader” and “persuadee,” which positions both participants as power-
ful (exerting influence) and subject to the other interactant’s power (being influenced). Although
much of the study of PCC focuses on clinician responsibility, mutual persuasion reminds researchers
that patients have the power to persuade during an interaction with a clinician, and research should
focus on patients’ persuasive contributions to the elements of PCC.
Mutual persuasion also reminds researchers that persuasion is not unidimensional. It is a dynamic
process involving both participants. Attention should be paid not only to the ways patients and clini-
cians attempt to persuade one another but also to the ways they each adjust their persuasive strate-
gies in response to one another. Research in ethics and persuasion tends to focus on the strategies
a clinician uses to persuade a patient to take a particular course of action. More of this research can
focus on the ways both patients and clinicians not only use persuasive strategies but also respond to
one another’s persuasive strategies in dynamic interactions.
Finally, mutual persuasion can be used to assess PCC, SDM, and relational autonomy. Mutual
persuasion can conceptually tie these together. Examining and measuring the persuasive strategies
used by the “persuader,” the responses received by the “persuadee,” and the adaptations each makes
to accommodate the other is an additional way to tie these concepts together using a cohesive system
of measurement.

Conclusion
We have presented mutual persuasion as way of thinking about PCC. From this perspective, we can
examine the way patients and clinicians exert their influence on clinical interactions. In a clinician-
patient relationship that accomplishes the goals of patient-centered care, such as making collabora-
tive decisions, communication can be characterized as mutual persuasion. This perspective can be
useful for understanding the dynamics of patient-clinician interactions.

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 13
DIFFICULT CONVERSATIONS
BETWEEN HEALTHCARE
PROVIDERS AND PATIENTS
Allison M. Scott

Some conversations in healthcare are particularly challenging for providers and their patients. His-
torically, “difficult conversations in healthcare” were primarily defined as those that involved “dif-
ficult patients” (which ignored the dyadic nature of the conversation) or those that involved some
form of “bad news delivery,” such as a physician relaying a terminal diagnosis or disclosing a medical
error to a patient (which ignored sources of difficulty beyond the conversational topic). However, a
rapidly growing body of research has sought to more broadly identify what makes certain conversa-
tions in healthcare difficult and provide recommendations for addressing those difficulties. Based on
this emerging work, the definition of “difficult conversations” has expanded to include conversa-
tions marked by critical or complex information, probability or risk, unwelcome or sensitive topics,
strong negative emotions, disagreement or conflict between patients and providers, and identity or
relational threats.
In this chapter, I summarize the main types of difficult conversations in healthcare, the theories
and methods used to study difficult conversations (including the scientific, interpretive, and critical
paradigms), and the strategies for successfully engaging in difficult conversations. The chapter focuses
primarily on research from within the communication discipline, although some research from other
fields is also represented. Difficult conversations can take various formats in various settings and can
contain different constellations of participants; this chapter focuses on face-to-face conversations
between patients and healthcare providers. Other chapters in this handbook address difficult interac-
tions about health between family members (see Chapters 7 and 8) and providers (see Chapter 17).
Finally, this chapter focuses on research that self-identifies as examining “difficult,” “challenging,”
“problematic,” “sensitive,” or “delicate” aspects of healthcare conversations. Many research studies
investigate the specific types of conversations described in this chapter but do not necessarily exam-
ine the difficulty of the conversations, and those studies are not represented in this review.

Types of Difficult Conversations in Healthcare

Based on extant work on difficult conversations, the sources of difficulty fall into the general catego-
ries of sensitive disclosures, challenging health contexts, high-stakes decisions, and charged topics.
One common reason these types of discussions are difficult is because they all spark strong negative
emotions (e.g., sense of failure, anger, fear, sadness, defensiveness, frustration, powerlessness, embar-
rassment, confusion), requiring providers and patients to regulate their emotions in order to engage
in the conversation (Kafetsios et al., 2014; Kennifer et al., 2009).

DOI: 10.4324/9781003043379-16 179

 Allison M. Scott

Sensitive Disclosures
Sensitive disclosures involve sharing information that is difficult to disclose, perhaps because some-
one does not want to hear it, the information is complex, or it renders someone vulnerable to
negative evaluation or action. Bad news delivery, the largest area of research in this category, entails
disclosing information that alters a patient’s view of their future in a drastic and negative way (Buck-
man, 1984), such as disclosing unfavorable information about the patient’s diagnosis or prognosis,
treatment failure, unwanted side effects, or ineligibility for clinical trial. A common theme in the bad
news delivery literature is that the difficulty of the conversation lies in the dilemma of how to tell
the full distressing truth while also preserving hope for patients and their families (e.g., Curtis et al.,
2008; Del Vento et al., 2009). In addition, bad news delivery makes relevant other conversational
goals that can be difficult to simultaneously achieve, including managing negative emotions, avoid-
ing misunderstanding or wedges in the therapeutic relationship, managing medical uncertainty, and
helping patients make no-win decisions.
Research on sensitive disclosures also has examined disclosing (and apologizing for) medical
mistakes or adverse events resulting in patient death or serious injury. In the past, many healthcare
organizations actively discouraged clinicians from disclosing medical errors or apologizing for them,
fearing that such conversations would open the organization to litigation risk. However, research
revealed that disclosing errors actually served to lower malpractice litigation (Helmchen et al., 2010;
see also Chapter 15, this volume), and the findings prompted a cultural shift from secrecy to patient
safety in healthcare organizations (Kohn et al., 1999). In addition, many states have adopted “apol-
ogy laws” that protect providers in expressing regret for mistakes (McDonnell et al., 2008), which has
sparked further investigation into how to effectively apologize for errors. Research has identified at
least four components of effective error disclosures: explicitly describing the error, explaining why it
happened, summarizing how recurrences will be prevented, and apologizing for the harm (Bonnema
et al., 2012). However, even though practitioners have a clear understanding of what constitutes an
effective apology, consistently endorse “open and honest communication” about medical errors as
best practice (Noland & Carmack, 2015, p. 1237), and are more empowered to disclose errors, such
conversations remain challenging. For example, some providers report that passive and casual (rather
than direct and formal) communication is usually the best way to realistically report an error, because
being nonassertive resolves the dilemma of ensuring the error is addressed in a way that does not
threaten organizational hierarchy (Noland & Carmack, 2015).
There are several other types of sensitive disclosures that make for difficult conversations in
healthcare. Some research has investigated situations where patients are reluctant to disclose impor-
tant health information to their providers (Anderson et al., 2019), where physicians must disclose
their own illness to patients (Klitzman & Weiss, 2006), or where patients share information with
one provider and it creates a confidentiality dilemma of whether to reveal that information to
other providers (Petronio & Sargent, 2011). Other research has examined genetic risk disclosure as
a difficult conversation (Ashida et al., 2009; Guan et al., 2018). These disclosure conversations are
often marked by dilemmas, such as sharing complex information in a comprehensive way without
overwhelming patients or honoring patient or provider confidentiality without compromising the
quality of patient care.

Challenging Contexts
Some patient-provider conversations are difficult because of the particular healthcare context in
which they take place. Conversations about end-of-life care are consistently characterized as difficult
(see Chapter 9, this volume), demonstrating that even in areas of medical practice where provid-
ers must routinely discuss terminal diagnoses, conversations are still challenging. End-of-life talk is

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marked by numerous dilemmas, including being honest while maintaining hope (e.g., Curtis et al.,
2008), honoring patient autonomy when the provider disagrees with the patient’s decision (e.g.,
Marcus & Mott, 2014), maintaining a patient’s trust while not imposing the provider’s own values
on the medical decisions (e.g., Meyer et al., 2012), and providing supportive and compassionate care
while maintaining professional and personal boundaries (e.g., Main, 2013). These goals are difficult
to simultaneously achieve, which is what renders end-of-life conversations particularly difficult.
Another cluster of contexts that can make for difficult conversations includes pregnancy, preg-
nancy loss, labor, and neonatal intensive care. Discussions in these contexts also entail dilemmas for
providers, including telling a woman that she has miscarried while helping her make time-sensitive
treatment decisions (e.g., whether to use watchful waiting, medical management, or surgical man-
agement; Brann & Bute, 2017) and facilitating optimal health outcomes for laboring women (which
may contradict the women’s birth plan preferences) while maintaining patient trust (Dalton et al.,
2020).

High-Stakes Decisions
A third category of difficult conversations includes patient-provider discussions about high-stakes
decisions. Healthcare conversations are replete with decision-making, but some decisions are espe-
cially crucial, complex, or sensitive, making conversations about those decisions especially chal-
lenging. One such decision is informed consent to participate in clinical trials. The primary goal of
these conversations for most providers is informed consent, but practitioners commonly struggle to
provide not too much and not too little but just the right amount of information for patients to be
optimally informed. Observational research of informed consent discussions between patients and
doctors reveals that these conversations often fall short of the ideal of informed consent. For exam-
ple, sometimes key elements of informed consent are missing entirely from the discussion (Jenkins
et al., 1999), some clinicians explicitly or implicitly try to persuade the patient to participate in a
trial (Brown et al., 2004), and other providers decline to alert eligible patients about a trial for fear
of harming their relationship (Curbow et al., 2006).
Several studies on difficult conversations have investigated how clinicians and patients talk about
the decision to intensify treatment, such as moving into active management of Alzheimer’s disease
(Karnieli-Miller et al., 2007) or beginning insulin treatment or other forms of diabetes self-man-
agement (Rose et al., 2009; White et al., 2016). Other high-stakes decisions include whether to
vaccinate (Heiss et al., 2015; Reno et al., 2018), to donate organs (Traino & Siminoff, 2016), or to
undergo genetic testing (Dean & Davidson, 2018). In addition, any decision when the patient and
provider have a difference of opinion can turn into a difficult conversation, such as when the patient
resists or refuses a provider’s recommendation (Marcus & Mott, 2014; Stivers, 2005). Conversations
about high-stakes decisions are typically challenging because the provider’s goal to help patients
achieve optimal health outcomes can conflict with the patient’s own goals for their healthcare.

Charged Topics
Finally, some patient-provider interactions are difficult because the topic of conversation is “charged”
in the sense that it carries significant identity implications, making discussions uncomfortable, awk-
ward, embarrassing, or even stigmatizing or taboo, even in healthcare interactions (see Chapter 6,
this volume). Obesity and weight management (Thille, 2019), sexuality and sexual health (Baner-
jee et al., 2018; Utamsingh et al., 2016; Venetis et al., 2017), spirituality (Canzona et al., 2015),
substance use, including opioid prescription and tapering (Matthias et al., 2017), disability (Dug-
gan et al., 2010), and mental health (Kanaan et al., 2009) have all been identified as topics of dif-
ficult conversations in healthcare. The difficulty of these conversations lies in the dilemmas of, for

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example, being supportive while persuading the patient to change unhealthy behavior, discussing
the health implications of these topics while also managing potential face threats, and respecting the
patient’s privacy while probing for necessary information. It is not only providers who face dilem-
mas in discussing charged topics. Denvir (2014) found that patients who have problematic lifestyle
information to disclose to their physicians (e.g., substance use, poor diet) experience the dilemma
of being honest so their physician can treat them appropriately while preventing the physician from
making unflattering attributions about them.
Another topic of difficult conversations is cost. The primary goal of cost conversations is to
reduce cost and practice cost-effective medicine (Brick et al., 2019; Ekberg et al., 2017; Wolfson
et al., 2014), but Scott et al. (2020) found a number of other relevant goals that physicians have in
cost discussions with patients that potentially compete with one another and render the conversation
challenging, including making treatment decisions, promoting patient adherence, being a “good
doctor,” stewarding medical resources, advocating for patients, preventing patient embarrassment,
and protecting the physician-patient relationship.
Some research has examined discussions of adherence as difficult. Talking about adherence can
threaten a patient’s identity as a “good patient” (Watermeyer & Penn, 2012) and also introduces the
need for clinicians to persuade patients to change their behavior, which is not always a welcome task
(Mishra et al., 2006). Similarly, how providers talk with parents about their child’s health is some-
times considered a difficult conversation because the child’s health has implications for the quality of
parenting, and persuading parents to change their own behavior to promote their child’s health can
be a delicate task (Brown et al., 2007; Shue et al., 2016).
It is worth noting that even routine topics of conversations can be challenging to discuss.
For example, Strekalova et al. (2017) and Tracy (2004) examined responding to patients’ dis-
closure of personal health history as a difficult conversation, and Treise et al. (2016) studied
patients’ request for physicians to wash their hands before beginning an examination as a difficult
conversation.

Summary
Martin et al. (2015) observed that it is “easier to classify difficult healthcare conversations than to
define them” (p. 1248), but a careful review of the types of difficult conversations reveals that they
share an underlying commonality: All difficult conversations are characterized to some degree by
dilemmas resulting from conflicting goals (and almost always entail the previously mentioned goal
of managing strong negative emotions). Although the idiosyncratic goals of the different types of
conversations and the different participants in the conversations may vary, the defining feature that
makes these conversations difficult is the relevance of multiple goals that conflict with each other,
creating dilemmas about how to achieve all of the goals.

Theories and Methods for Studying Difficult Conversations

in Healthcare
Scholars from a variety of disciplines have conducted research on difficult conversations in health-
care, with most of the work coming from the behavioral and social sciences and various fields of
medicine. Research within the communication discipline has been consistently informed by theory,
although research outside communication is less theoretically grounded; this sometimes makes it
difficult to draw broader conclusions across studies. Across disciplines, researchers have used a wide
variety of methods to investigate difficult conversations, which has yielded a robust scholarly under-
standing of difficult conversations.

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Theoretical Frameworks
The theories used to frame research on difficult conversations differ by academic discipline. In the
field of medicine, the most commonly used conceptual frameworks are communication skills train-
ing protocols, such as SPIKES (Reed & Sharma, 2016; Seifart et al., 2011) or the Choosing Wisely
campaign (Wolfson et al., 2014). Other general theoretical perspectives in medical research include
the paradigms of patient-centered communication (Mast et al., 2005), shared decision-making
(Brown et al., 2004; Ekberg et al., 2017), or bioethical principles (Kanaan et al., 2009). However,
most of the research from the field of medicine is not clearly guided by any theory or theoretical
construct, which makes it challenging to identify underlying explanations for why certain difficult
conversations are more or less successful.
In the field of communication, studies on difficult conversations have been framed most com-
monly by the multiple goals theoretical perspective (Dalton et al., 2020; du Pré, 2002; Scott et al.,
2020), communication privacy management theory (Canzona et al., 2015; Petronio & Sargent,
2011; Venetis et al., 2017), and the elaboration likelihood model (Curbow et al., 2006; Shue et al.,
2016). This makes sense given that these theories account for goal dilemmas, which is a defin-
ing feature of difficult conversations in healthcare. Other communication theories that have been
used by scholars to study difficult conversations include uncertainty management theory (Dean &
Davidson, 2018), relational dialectics theory 2.0 (Bute & Brann, 2019), the memorable messages
framework (Noland & Carmack, 2015), the disclosure decision-making model (Venetis et al., 2017),
and communication accommodation theory (Watson et al., 2015). The obvious question is how
to begin leveraging the utility of these theories in difficult conversations research in fields beyond
communication.

Methodology
Methodologically speaking, the study designs used in difficult conversations research vary widely,
which is a strength of the literature. However, the definitions and measures of difficult conversations
also vary widely, which is a weakness of the body of work.

Design
Difficult conversations in healthcare have been studied using many study designs, including ethno-
graphic observations, discourse and conversation analysis, conversation coding and rating, content
analysis, individual and focus group interviews, surveys, experiments, and interventions. To illustrate
how these different methods answer different questions about difficult conversations, Table 13.1
summarizes specific studies of bad news delivery using various methods. The table illustrates how
findings differ based on method and how studying the same difficult conversation using different
methodological approaches can contribute to a more robust understanding of the conversation.

Measures of Difficult Conversations

Difficult conversations have been operationalized in many ways in extant work. The most common
measure is a presence/absence measure that captures whether the conversation happened, such as
asking participants a question like “Have you and your doctor discussed any particular wishes you
have about the care you would want to receive if you were dying?” (Wright et al., 2008, p. 1666).
Other presence/absence measures include assessing whether vaccines were recommended (Heiss
et al., 2015) or whether sensitive information was disclosed (Ashida et al., 2009; Farber et al., 2017).

183
 Table 13.1 Studying Bad News Delivery

Method

Ethnography Discourse Analysis Coding Conversations Content Analysis Interviews Survey Experiment Intervention
Kar nieli-Miller Graugaard et al. Kennifer et al. Lamiani et al. Oikonomidou Rogg et al. (2009) Del Vento Gor niewicz et al.
et al. (2010) (2011) analyzed (2009) coded 264 (2012) analyzed et al. (2017) surveyed 1,605 et al. (2009) (2017) evaluated
observed 14 bad news oncolog ist-patient communication interviewed physicians and exper imentally a communication
encounters of conversations conversations for strateg ies from 25 doctors found that they assigned eight skills training
Alzheimer’s between 23 type/sever ity of 304 physicians and found perceived bad doctors to for 66 residents
diagnosis doctors and patient emotion and found that doctors news delivery disclose good and health
disclosure and 89 patients and empathic/ that physicians recognized the to be stressful or bad news to professional
found that and found that non-empathic access more importance of and potentially 16 patients and students and
physicians dull doctors rarely responses and relationally appropr iate and threatening found doctors found that
the impact ask patients found that focused (than effective bad to their used implicit participants’
of disclosure about their desire oncolog ists task-focused) news delivery reputation and language at a scores in the
by keeping for bad news responded strateg ies for (which they that they had higher rate in intervention
discussions short, infor mation empathically communicating defined as high tolerance the bad news group improved

184
using fractured and instead to one-third of bad news, individualized for skewing condition and more in active
sentences, use implicit patients’ negative which they for each prognostic used explicit listening skills and
Allison M. Scott

talking about strategies (e.g., emotional lear ned from patient) and infor mation language at a addressing patient
symptoms implicature) that disclosures their personal believed bad optimistically. higher rate in feelings than the
instead of saying require patients and were least exper ience news delivery the good news control g roup
“Alzheimer’s,” to request further empathic when rather than should be condition. participants’
avoiding details, infor mation. responding to their medical interdisciplinar y scores.
and rapidly fear and most education. and
transitioning empathic when collaborative.
topics from responding to
diagnosis to sadness.
management.
 Difficult Conversations

Some studies have experimentally manipulated whether the difficult conversation happened, such
as Brick et al. (2019), who examined whether participants preferred a doctor who did or did not
discuss cost. Some studies use a micro-level presence/absence measure by coding whether a difficult
conversation exhibits certain features, such as conversational actions (e.g., requesting information,
expressing support, disclosing emotion; Brown et al., 2007; Guan et al., 2018; Mast et al., 2005) or
linguistic elements (Hesson & Pichler, 2018; Strekalova et al., 2017).
Difficult conversations also have been measured in terms of quantity markers, such as length of
conversation (Reno et al., 2018; Traino & Siminoff, 2016), number of conversations (Shue et al.,
2016), or number of topics discussed (Fleissig et al., 2001). Other studies assess the extent to which
communication during difficult conversations is open (Banerjee et al., 2018), affiliative or dominant
(Grant et al., 2000), empathic or non-empathic (Kennifer et al., 2009), relational (Kafetsios et al.,
2014), or generally competent (Rose et al., 2009; White et al., 2016). Still other studies rate various
aspects of communication for high or low quality (Brown et al., 2004; Doyle et al., 2011). In short,
there is little consensus on how to best measure difficult conversations.
It is worth noting that when communication is operationalized in terms of presence/absence or other
quantity features, the conversational outcomes tend to be a mix of positive, negative, and insignificant
effects. For instance, Merckaert et al. (2009) measured presence/absence of ten clinician communication
behaviors in informed consent discussions and found that only one had an impact on the patient outcomes
of interest, and the effect was in the opposite direction anticipated (i.e., checking patient understanding
led to increased patient anxiety, which the authors speculated could be because checking prompts patients
to pay more attention to the risks of a medical decision). And Reno et al. (2018) measured conversation
length in a study about physicians promoting vaccines to parents of young patients and found that physi-
cians actually spent less time talking with vaccine-hesitant parents than with typical parents.
By contrast, when the quality of communication in difficult conversations is measured, the pattern
of outcomes is more consistent such that higher quality conversations lead to better outcomes. For
example, Grant et al. (2000) measured doctor communication in terms of affiliative and dominant
styles in informed consent discussions and found that a doctor’s affiliative communication success-
fully predicted patient agreement to participate in a clinical trial. And White et al. (2016) measured
the quality of physician communication during diabetes discussions in terms of clarity, concern,
partnership, respectfulness, and compassion and found that patients’ mistrust of the physician was
associated with poorer quality communication. In short, accounting for the quality (rather than
quantity) of communication in difficult conversations appears to lead to a more consistent pattern of
results linking communication and outcomes.

Summary
Broadly speaking, there is a balance between the scientific and interpretive paradigms in the research
on difficult conversations. One recent study has taken a critical approach to examining difficult
conversations: Utamsingh et al. (2016) experimentally compared heteronormative and non-het-
eronormative communication from doctors and found that lesbian, gay, and bisexual participants
trusted their doctor less and were less likely to disclose relevant health information to their doctor in
the heteronormative than the non-heteronormative condition. However, the critical paradigm is not
well represented in difficult conversations research across academic disciplines.

Strategies for Successfully Engaging in Difficult Conversations

in Healthcare
Research on difficult healthcare conversations tends to focus on four main types of research ques-
tions or hypotheses: (a) identifying barriers to difficult conversations, (b) describing the content of

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difficult conversations, (c) explicating the meaning and function of various features of difficult con-
versations, and (d) predicting outcomes based on whether difficult conversations happened or on the
quality of the conversation. Each of these areas of focus has specific implications for what it means
to engage successfully in difficult conversations.

Identifying Barriers to Difficult Conversations

There are numerous barriers to difficult conversations for patients and providers, although most
research has focused on the perspective of providers. One of the most common barriers that makes
conversations difficult to initiate is provider uncertainty. Practitioners report being uncertain about
the best timing for a difficult conversation (Farber et al., 2017), what course of action to recom-
mend or how to answer patient questions (Buckman, 1984), and what to actually say and not say
during difficult conversations (Nordby & Nøhr, 2011). Klitzman and Weiss (2006) interviewed
50 doctors about disclosing their own health condition (27 physicians were HIV positive, and
23 physicians had other conditions such as cancer, heart disease, or hepatitis) to patients and found
that doctors were uncertain about whether to tell patients without being asked and whether to tell
the truth or lie or misrepresent the information. They also found that patients were uncertain about
whether to ask about a doctor’s diagnosis and whether they had a right to know. These findings
suggest that strategies for overcoming barriers to difficult conversations likely differ for doctors and
patients.
Clinicians also report negative emotions as a barrier to initiating difficult conversations, which
they describe as “unhappy, unpleasant, frustrating, and bothersome” and “difficult, hard, exhaust-
ing, and draining” (Wallace et al., 2006, p. 8520). Additionally, some providers acknowledge that
difficult conversations (e.g., disclosing the doctor’s own diagnosis of HIV, cancer, heart disease,
or hepatitis) come at a relational cost, potentially leading patients to lose trust in the provider or
stop relying on their guidance (Klitzman & Weiss, 2006). However, Brick et al. (2019) found
that patients preferred physicians who initiated discussion of cost to those who did not and that
cost conversations were not harmful to patient-provider relationships. Many clinicians worry
that difficult conversations are too time-consuming (Farber et al., 2017; Karnieli-Miller et al.,
2010). However, du Pré (2002) found that discussing difficult topics did not lengthen the aver-
age medical visit, and Kennifer et al. (2009) found that responding empathically (compared to
non-empathically) to patients’ emotional disclosures lengthened patient-provider discussions by an
average of only 21 seconds.
Strategies implied by this research on barriers include the general recommendation of being
aware of potential barriers and directly addressing them. However, insight on exactly how to
address the barriers (especially how to address them communicatively) is rarely provided. The
conclusion in many studies on barriers to difficult conversations is some variation of “more
training is needed” (e.g., Karnielli-Miller et al., 2007; Nordby & Nøhr, 2011), but the question
remains: What exactly should providers be trained to do in these difficult conversations? Further-
more, it is worth noting that skills training research tends to measure participant self-perceptions
of improvement, such as feeling prepared, confident, comfortable, effective, or competent in diffi-
cult conversations (Bonnema et al., 2012; Reed & Sharma, 2016); yet “successful” training shows
little to no impact on actual patient outcomes (Doyle et al., 2011; Langewitz, 2017). Moreover,
Andersen et al. (2019) have argued that, in some cases, practitioners should not use communica-
tive strategies to overcome patient barriers to difficult conversations (e.g., reluctance to disclose
personal information) because that would undermine the patient’s autonomy and work against
empowering the patient in his or her own healthcare. Clearly, more work is needed to identify
the best approaches for training physicians in effectively and appropriately overcoming barriers to
difficult conversations.

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 Difficult Conversations

Describing the Content of Difficult Conversations

Many research studies have sought to describe the content of difficult conversations in healthcare,
such as identifying various communicative strategies providers and patients use when engaging in
difficult conversations. For instance, based on interviews with 27 family medicine doctors, Can-
zona et al. (2015) found that when patients asked their doctors about spiritual matters, doctors
strategically constructed privacy boundaries by using personal disclosure, general disclosure, refusal
to disclose, shifting topic, validating the patient’s question, or outsourcing the discussion, and their
choice of strategy was based on their perception of how to best balance the tension between their
professional responsibility to patients and their need to self-protect from becoming co-owners of
potentially challenging information. Thille (2019) conducted a conversation analysis of 29 audio-
recorded primary care physician-patient visits and found that some physicians interpreted blood
pressure results and discussed potential predictors of high blood pressure with patients but rarely
interpreted weight results or discussed predictors of problematic weight. In the absence of physician
interpretation, patients offered their own interpretation of their weight, and their interpretations
often perpetuated anti-fat stigmatizing discourse (e.g., framing their weight as personal failure),
which physicians did not challenge. Stivers (2005) also used conversational analysis to examine 360
pediatrician-parent encounters and found that parents of pediatric patients used the strategies of
acceptance, withholding of acceptance, or active resistance to negotiate for a desired (but not medi-
cally indicated) antibiotic prescription.
Other studies of difficult conversation content have focused on micro-features of the talk. For
example, Del Vento et al. (2009) analyzed conversations between eight physicians and 16 patients
and found that physicians used implicit language (i.e., using alternative terms for the diagnosis, quali-
fying their evaluation, underemphasizing certainty, and subtly separating the patient from the dis-
ease) at a higher rate when delivering bad news than good news, and they used explicit language at a
higher rate when delivering good news than bad news. However, implicit language did not interfere
with the truthfulness of the information, suggesting that implicit language represents a solution to
the dilemma of how to speak honestly and preserve hope when sharing bad news.
Some studies have focused on the disconnect between the actual and ideal content of difficult
healthcare conversations. For instance, Brown et al. (2004) examined 59 consultations where oncol-
ogists presented the opportunity for participation in a clinical trial and found that in one-third of the
discussions, oncologists made statements favoring one option over another (despite the imperative
to let patients make their own informed choice). Kanaan et al. (2009) interviewed 22 neurologists
and found they reported that tailoring their disclosure to each patient meant sometimes stopping
short of telling the truth about a stigmatizing mental health diagnosis by either not disclosing the
diagnosis at all or disclosing a different (incorrect) diagnosis to avoid upsetting the patient, a finding
that demonstrates the potential cost of tailoring communication (i.e., providers may tailor so much
that they do not say what they actually believe). Similarly, Rogg et al. (2009) found that even though
physicians agree that open communication best supports patient autonomy, they tend to favor skew-
ing prognostic information in an optimistic direction and potentially hiding the true content of bad
news from patients.
Overall, two potentially counterintuitive strategies for effective communication are implied by
studies of the content of difficult conversations. Most difficult conversations research assumes that
tailoring information to each individual patient results in the most effective conversations and that
being direct and explicit in communication is better than being implicit or off-record because
implicit talk poses a risk to full truthfulness and explicit talk does not threaten key conversational
outcomes (e.g., Stein et al., 2019). However, some findings suggest that tailoring does not always
result in the most truthful conversations (e.g., Kanaan et al., 2009; Rogg et al., 2009), and there is
evidence that implicit communication does not necessarily entail a trade-off with truthfulness and

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could in fact be an effective solution to the salient dilemma of honesty and empathy in difficult con-
versations (e.g., Del Vento et al., 2009).

Explicating the Meaning and Function of Difficult Conversations

A third set of studies has focused on the meaning and function of difficult healthcare conversations.
This research suggests that strategies for engaging in difficult conversations are more or less effective
based on their meaning for patients and providers. For instance, Meyer et al. (2012) found that when
critically ill pediatric patients’ parents asked doctors, “What would you do if this were your child?”
doctors were reluctant to answer, and some viewed not responding to the question as acceptable and
even ethical because answering might unduly influence decision-making for the patient. However,
rather than meaning for the question to be taken literally, patients meant the question as a plea for
help, and when the question was not answered, parents could refrain from asking the doctor’s recom-
mendation in the future, perceive the doctor as unavailable, or experience a sense of abandonment.
Furthermore, research on the meaning of difficult conversations reveals that there is not an isomor-
phic association between communicative behaviors and what they mean; rather, different strategies
for engaging in difficult conversations can be enacted to different effects based on the meaning the
strategies hold for the patients and providers. For instance, Hesson and Pichler (2018) analyzed 95 psy-
chiatrist-child interactions and found that when patients say, “I don’t know,” it can serve a “cognitive”
function (i.e., the patient truly does not know what to say next) or a “resistive” function (i.e., the patient
is saving face, mitigating unwelcome effects of open disagreement or rejection, holding their conversa-
tional turn, or ending the discussion). Knowing how to distinguish the two functions of “I don’t know”
enables the provider to know when to probe further or when to accept the patient’s claims.
Similarly, Beach and Prickett (2017) studied “delicate” aspects of patient-doctor conversations
and found that patients initiate laughter and humor to address troubling topics of conversation,
but doctors are not invited to and do not reciprocate the laughter or humor. Knowing that patient
laughter commonly signals the patient’s perception of a topic as “troubling” enables the doctor to
discern that the patient is not necessarily inviting the doctor to share in the humor (which might be
socially appropriate in less difficult conversations) but rather is inviting the doctor to acknowledge
and address their concerns; in fact, not laughing is a key resource for doctors to align with and respect
patients during difficult conversations.
Scott et al. (2020) interviewed 36 primary care physicians and found that their cost conversa-
tions with patients entail numerous goals (e.g., reducing cost of care, making treatment decisions,
promoting patient adherence, reinforcing their professional identity as a “good doctor,” stewarding
medical resources, advocating for patients, preventing patient embarrassment, and protecting the
physician-patient relationship). They found that physicians use strategies such as directly addressing
cost, avoiding discussion of cost, and falsely reassuring patients about cost concerns to achieve these
goals, but physicians’ goals did not lead to the use of certain strategies in a consistent way; some
physicians used seemingly contradictory strategies in the same conversation to achieve the same goal
(e.g., trying to protect the therapeutic relationship by directly discussing cost and avoiding cost dis-
cussion). Instead, Scott et al. found that it was the meaning of the conversation invoked by physicians
(e.g., cost conversation as cultivating patient involvement, providing holistic healthcare, checking a
box, arguing with the patient, distracting the patient) that was linked to their strategies for the dif-
ficult conversation in a consistent way.

Predicting Outcomes of Difficult Conversations

Finally, some research has focused on the outcomes of difficult conversations for patients. For exam-
ple, higher quality provider communication during difficult conversations (the operationalization of

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which is described later) is associated with better patient health behavior, including better adherence
(Mishra et al., 2006), higher rates of vaccination (Heiss et al., 2015), higher rates of patient disclosure
of relevant personal health information (Ashida et al., 2009; Utamsingh et al., 2016), and lower rates
of unwanted (and costly) life-sustaining treatment at the end of life (Wright et al., 2008). Higher
quality provider communication is also associated with higher levels of patient satisfaction (Kafetsios
et al., 2014; Mast et al., 2005) and trust (Curbow et al., 2006; Utamsingh et al., 2016) and lower
rates of patient depression and anxiety (Stein et al., 2019). Findings from Rose et al. (2009) illustrate
the oftentimes complex nature of the impact of difficult conversations: The researchers surveyed 105
patients with diabetes and found a significant interaction effect between patients’ self-efficacy with
blood glucose self-monitoring and doctor communication such that higher quality communica-
tion from the doctor bolstered self-monitoring of blood glucose levels when patient self-efficacy
was high but undermined self-monitoring when self-efficacy was low, suggesting that doctors who
are sensitive to patients’ low self-efficacy may act in a way that inadvertently reduces the patient’s
self-management.
Strategies for engaging successfully in difficult conversations can be inferred from how the studies
operationalized communication in order to observe its impact. Specifically, effective communication
during difficult conversations appears to be direct, clear, rational, and not avoidant or rushed (i.e.,
task-focused; Heiss et al., 2015; Mishra et al., 2006; Stein et al., 2019; Wright et al., 2008); friendly,
supportive, and attuned to emotional concerns (i.e., relationally focused; Curbow et al., 2006; Kaf-
etsios et al., 2014; Mast et al., 2005); and respectful of patient autonomy and non-stigmatizing (i.e.,
identity-focused; Rose et al., 2009; Utamsingh et al., 2016).

Summary
Broadly speaking, the research summarized earlier suggests that the pursuit of various goals in dif-
ficult conversations has implications for the relative success of the interactions. Although the various
recommended strategies differ by context or topic or participants, the effective strategies implied
by research findings share the underlying assumption that communication that attends to multiple
(and potentially conflicting) goals is more successful than communication that ignores relevant goals
during difficult interactions.

Future Research on Difficult Conversations in Healthcare

The literature on difficult conversations in healthcare has grown significantly in recent years. It is
a fruitful area of investigation because the findings hold great promise for practically improving an
important aspect of healthcare delivery. As this field of study continues to grow, there are at least
three ways future research on difficult conversations can take meaningful steps forward.
First, more consistent measures of difficult conversations across disciplines are needed. The vari-
ety of operationalizations is likely due to the lack of consistent conceptualization of what counts as
“good” communication in difficult conversations. Most studies do not actually define good com-
munication, and the studies that do define it do so in very different ways. This lack of consensus in
conceptualizing and operationalizing communication makes it difficult to draw conclusions across
studies and thereby leverage research findings to improve difficult conversations in practice. Going
forward, the difficult conversations literature will be strengthened if communication can be con-
ceptualized and operationalized consistently, theoretically, and in ways that account for the quality
(not just the quantity) of communication. Furthermore, the various academic disciplines conducting
difficult conversations research need to talk to one another rather than working in silos. This col-
laboration would leverage the expertise of each field and would facilitate the use of more consistent
definitions and measures of communication.

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 Allison M. Scott

Second, the field has developed to a point where a shift in methodology is warranted. Although it
is helpful for new contexts and topics of difficult interaction to be explored, investigations that iden-
tify what makes for successful difficult conversations across contexts and topics are needed. Specifi-
cally, there must be more longitudinal and observational research, dyadic or even triadic analysis, and
studies that link specific message features of difficult conversations to actual patient health outcomes
(not simply perceptions of how satisfying or helpful a conversation was). Also, research has identi-
fied a number of strategies for engaging in difficult conversations, and now experimental research is
needed to evaluate the relative effectiveness of these strategies.
Finally, research has begun to account for cultural differences in what makes for more or less
effective difficult conversations (e.g., Krieger, 2014; Mishra et al., 2006; Oikonomidou et al., 2017),
and this trend should continue in order to inform best practice. For example, Kpanake et al. (2016)
found that only 2% of Togolese patients preferred that their physician always tell the full truth
about bad news, 33% wanted the physician to tell only part of the truth, and 42% preferred that
the physician disclose the full truth to relatives only (and not tell the patient). Such results are not
unique to the Togolese; similar patterns may be found in many Asian and Middle Eastern cultures
(e.g., Rosenberg et al., 2017). Findings like this provide insight for engaging successfully in difficult
conversations by demonstrating that if physicians utilize strategies based on Western values (e.g., self-
determination, personal freedom), their communication may lead to negative emotions, distrust, and
misunderstanding among patients and families who do not share the same cultural values.

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 14
IMPROVING CLINICIAN AND
PATIENT COMMUNICATION
SKILLS
Brianna R. Cusanno, Nivethitha Ketheeswaran, and Carma L. Bylund

Patients, families, and clinicians make sense of health and illness through interaction and sharing sto-
ries (Harter & Bochner, 2009). Consequently, medicine is an inherently communicative endeavor,
with interpersonal communication at its core. Recognition of the importance of clinician-patient
communication has led to the development of communication skills programs (CSPs) to improve
clinical communication. In this chapter, we review approaches to designing, implementing, and
evaluating CSPs. We also highlight the philosophical paradigms and conceptions of communication
underlying CSPs and suggest future research directions.
For much of the 20th century, clinicians received little formal instruction in communication
(Hart, 2010; Makoul, 1999). Influential documents like the Flexner Report in 1910 led to an
increased focus on technical skills and scientific reasoning in physician training but deemphasized
the role of communication in medicine (Duffy, 2011). Similarly, nursing education emphasized the
scientific method and afforded little attention to developing interpersonal or communication skills.
However, in the mid-20th century, leaders in nursing such as Hildegard Peplau advocated for the
importance of relationships in nursing and for greater emphasis on developing nurses’ capacities
for “interpersonal care” (Hart, 2010, p. 7). Additionally, in the 1960s–70s, researchers began to
draw attention to gaps in doctor-patient communication (Korsch et al., 1968). These efforts led to
increased interest in studying clinician-patient interactions (Makoul, 1999).
Numerous studies have now demonstrated the importance of good clinical communication,
linking it to outcomes such as satisfaction (Batbaatar et al., 2017), patient safety (Wu & Rawal,
2017), fewer malpractice claims (Levinson et al., 1997), and health outcomes (Street, 2013; see
also Chapter 15, this volume). Research has also documented challenges in clinician-patient
communication. For example, physicians tend to dominate consultations (Pilnick & Dingwall,
2011), speaking roughly twice as much as patients during visits (Rhoades et al., 2001). Addition-
ally, clinicians often fail to identify patients’ chief concerns (Maguire et al., 1996), with one study
finding that clinicians successfully elicited the patients’ agenda in only 36% of visits (Singh Ospina
et al., 2019).
In response to this research, as well as advocacy by patients, families, and clinicians, CSPs are
now a critical component of clinician training. Accrediting bodies across the globe, including in
Canada, India, and the United States (AACN, 1998; Frank et al., 2015; Makoul, 1999; Modi et al.,
2016), have named communication as a core skill for clinical trainees. Further opportunities exist for
training for practicing clinicians. Thus, CSPs have been widely incorporated across stages of clinical
education at national and international levels.

194 DOI: 10.4324/9781003043379-17

 Improving Communication Skills

CSPs can produce a variety of benefits for patients and clinicians, including increased empathetic
expression among physicians (Bonvicini et al., 2009), quality of decision support among nurses and
pharmacists (Murray et al., 2010), discussion of emotions among oncology nurses (Canivet et al.,
2014), and patient satisfaction (Boissy et al., 2016). However, some studies on CSPs have produced
mixed results (Moore et al., 2018), and concerns remain about how to most effectively develop CSPs
and evaluate their outcomes (Bylund et al., 2018; Kerr et al., 2020).
CSPs can be interventions or educational programs. Communication skills (CS) interventions typi-
cally include pre-post assessments of participants’ self-efficacy and/or skills in either a single-group or
control-group design and may incorporate an evaluation of the intervention’s effect on patient out-
comes. CS interventions tend to focus on particular specialties or health issues, such as developing
skills in motivational interviewing to promote smoking cessation. In contrast, CS education is often
delivered through curricula across multiple years of medical or nursing education or through con-
tinuing professional education. CS education tends to focus on communication skills more generally
with less rigorous evaluation. In this chapter, we use the terms “CS intervention” or “CS education”
where distinctions are relevant and use the term “CSP” to encompass both types.
For the duration of this chapter, we will discuss (a) philosophical underpinnings of CSPs, (b)
CSPs across stages of education, (c) pedagogical methods used in CSPs, (d) assessment and evalua-
tion of CSPs, (e) CSPs for patients, (f) humanistic and cultural CSPs, (g) challenges in developing
successful CSPs, and (h) future directions for research on CSPs.

Philosophical Underpinnings of CSPs

All educational programs are based on underlying sets of values and assumptions about the nature
of our shared world. Although these assumptions are not usually explicitly articulated, examination
of these issues can improve our ability to understand, critique, and strengthen CSPs. Most CSPs
reflect a post-positivist philosophy, focusing on the development of valid and reliable assessment
instruments and orienting around notions of cause and effect (i.e., the assumption that improved
communication can directly affect other outcomes; Creswell, 2013). These CSPs typically adopt a
prescriptive, normative approach, relying on patient- or relationship-centered care frameworks to
develop a set of recommended communication skills. Generally, CSPs aim to move participants’
communication behaviors into alignment with these prescriptive models.
The dominant conception of CSPs corresponds with the broader trend toward competency-
based medical education (CBME), a movement in which curricula are designed to cultivate stand-
ardized competencies in learners (Frank et al., 2010). Here, “competency” is conceptualized as “an
observable ability of a health professional, integrating multiple components such as knowledge, skills,
values, and attitudes” (Frank et al., 2010, p. 641). These CSPs position communication as a toolkit
that clinicians and patients can become competent in utilizing and can implement during health
interactions.
An alternative perspective presumes communication is a lens through which humans make sense
of health interactions. In this chapter, we focus primarily on CSPs that construct communication as
a toolkit. However, later we will further draw out the distinction between communication as a lens
and communication as a toolkit.

CSPs Across Stages of Clinical Education

Nursing Education
Interprofessional and patient communication are widely recognized as important aspects of nurs-
ing practice. Among clinicians, nurses spend the most time with patients (Butler et al., 2018), and

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developing trusting, compassionate relationships with patients is a key component of nursing (Hart,
2010). However, nursing education has traditionally included limited formal curricula on commu-
nication skills (Hart, 2010). Some nursing educators have critiqued this absence (Rosenzweig et al.,
2008), and the inclusion of CSPs—including those using standardized and/or simulated patients—is
increasing in nursing education (MacLean et al., 2017). For example, one model is to integrate
teaching communication skills within a four-year teaching program for nursing (Üstün, 2006),
including time spent in practice communication laboratories and clinicals (Rosenzweig et al., 2008).
Communication topics covered in nursing curricula include expressing feelings, asking questions,
listening, counseling, communicating with angry patients, breaking bad news, end-of-life care, and
difficult conversations (Smith et al., 2018; Üstün, 2006).

Continuing Nursing Education

CSPs for practicing nurses typically focus on preparing nurses to communicate with patients about
difficult topics or in challenging contexts. CSPs involving nurses frequently include other clinicians
and may seek to develop communication skills by enrolling members of interprofessional teams
(Merckaert et al., 2015; Murray et al., 2010). Although some CSPs have demonstrated a positive
effect on the use of open-ended questioning and patient-centered communication strategies (Krui-
jver et al., 2001; van Weert et al., 2011), more rigorously designed studies are needed to understand
the effects of CSPs for practicing nurses, particularly in non-cancer contexts (Kerr et al., 2020).

Undergraduate Medical Education (UME)

Over the past 40 years, CSPs have become incorporated into UME (i.e., medical schools) across
the globe, including in Canada, China, India, Australia, and Qatar and throughout Europe and the
United States (Bylund et al., 2020; Liu et al., 2015; Modi et al., 2016; Phillips, 2008). Thus, it is
widely accepted that communication is a core clinical skill that must be both taught and assessed
during medical school (Kurtz et al., 2005/2017).
In the United States, this recognition led to the incorporation of a clinical skills test into the
United States Medical Licensing Examination (USMLE) Step 2 exam in 2005. As part of this exami-
nation, typically taken during the final year of medical school, students are required to demonstrate
their ability to perform physical exams, gather and give information to patients, and communicate
with colleagues by interacting with standardized patients (actors) in 12 different stations (Rider,
2010). Although some researchers have critiqued the validity of the exam (McGaghie et al., 2011),
the inclusion of standardized patients has required medical schools to focus more on CSPs than they
had in the past.
Although every medical school has its own approach to CSPs, generally the first two years
include some coursework on communication, professionalism, and/or ethics (Task Force on the
Clinical Skills Education of Medical Students, 2005). Typically, the second two years of UME
focus on clinical rotations, with less time dedicated to coursework. However, some medical schools
have been working to integrate CSPs into the clinical rotation years of UME (Egnew et al., 2004;
Towle & Hoffman, 2002).
Most CSPs in medical schools focus on basic communication skills, often taught in the context of
primary care consultations. These skills may include learning to structure the flow of a medical visit,
offer differential diagnoses, and communicate treatment options (Task Force on the Clinical Skills
Education of Medical Students, 2005). In later years, students might participate in CSPs addressing
more specialized topics, such as communicating about mental health, health literacy, sexuality, and
bad news (Task Force on the Clinical Skills Education of Medical Students, 2005; Towle & Hoff-
man, 2002).

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Graduate Medical Education (GME)

Medical school graduates complete a three- to five-year residency training program in a chosen spe-
cialty, which may be followed by a fellowship program for further subspecialty training. Residents
and fellows practice medicine while under supervision. This is a particularly beneficial time for
CSPs, as residents and fellows have significant clinical experience but have not necessarily become
fixed in their communication practices (Bragard et al., 2006). Communication skills are at the center
of three of the American Council for Graduate Medical Education’s core competencies: Interper-
sonal and Communication Skills, Professionalism, and Patient Care. Accredited GME programs in
the United States are required to demonstrate that they are teaching and assessing these skills. These
competencies are integrated through the milestone assessment systems that are used to evaluate a
trainee’s progress (Eno et al., 2020). Program directors are able to develop or choose the teaching
methods and assessment methods that best fit their program and learners’ needs.
These opportunities to teach and evaluate CSPs in GME have led to many published studies on
these topics. A recent systematic review of CSPs in GME that measured communication behavior
change found that 75 studies have been published internationally since 2001 (Bylund et al., 2019).
Overall, the authors concluded that there is strong evidence that programs can change behaviors in
short-term, simulated settings, but much more work needs to be done to show how those skills can
transfer into clinical settings.

Continuing Medical Education (CME)

Communication remains an important issue for physicians after they have completed their training
program. CSPs for experienced physicians typically focus on specific communication challenges
and contexts. One CME program, for instance, focused on helping emergency physicians learn to
better communicate with critically ill patients about do-not-resuscitate orders (Cheng et al., 2019).
CME is often specialty specific and may target interprofessional teams rather than physicians alone.
For example, Shaw and colleagues (2014) helped interprofessional teams in the ICU improve com-
munication with families. CME programs are often delivered through organizations and associations
such as the Academy of Communication in Healthcare, EACH: The International Association for
Communication in Healthcare, the Institute for Healthcare Communication, and Vital Talk, as well
as through institutional-based programs and research studies.

Pedagogical Methods Used in CSPs

Although CSPs address diverse contexts, audiences, and skills, many use similar pedagogical meth-
ods. Next, we describe a number of the commonly used methods for delivering CSPs. This is not an
exhaustive list; many other techniques—such as educational rounds (Corless et al., 2009), case stud-
ies, reflective writing (Pangh et al., 2019), and one-on-one coaching (Niglio de Figueiredo et al.,
2018)—are used to reinforce the importance of good communication and may be integrated into
CSPs. Regardless of method, most CSPs are delivered in group learning environments and include
time for group discussion and reflection. Many of the methods discussed can be delivered in various
settings, including online or in person, through short workshop series or retreats, or across a clinical
education curriculum.
Foundational to CSPs is the choice of a conceptual model. Models provide frameworks for CSPs,
clarify how educators conceptualize “good” communication, and ensure that outcomes evaluated
in CS interventions correspond with the curricular content taught (Brown et al., 2017). Most con-
sultation models are based on practicing clinicians’ experiences of consultations, with reference to
the concepts of patient- and/or relationship-centered care, rather than on communication theory.

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Several of the most predominant models adopt a “task-based approach,” meaning that the model
proposes a list of communication tasks to be accomplished and suggests skills or strategies that clini-
cians can use to accomplish each task (Makoul, 2001). For example, the Calgary-Cambridge Guide,
a widely used model for teaching communication and clinical skills, prescribes five sequential tasks—
such as “initiating the session” and “gathering information”—and two ongoing tasks—“providing
structure” and “building the relationship”—and offers a list of communication skills clinicians may
use to accomplish each task (Kurtz et al., 2003). Other models also use acronyms or other mnemonic
devices as an organizational structure.

Didactic Methods: Lectures, Readings, and Videos

Many CSPs include didactic material such as lectures, readings, and videos. Typically, didactic mate-
rials are not stand-alone interventions but may be used to overview key concepts and encourage
buy-in from participants (Kurtz et al., 1998). Lectures may be used to provide a rationale for the CSP
and describe a set of recommended communication strategies and/or skills. Readings may be distrib-
uted before a CSP to prepare participants for engagement or after a CSP to summarize and reinforce
the skills and/or strategies discussed (Zabar et al., 2010). Additionally, many CSPs use demonstration
videos to portray a clinician-patient interaction. Some programs use videos that illustrate how rec-
ommended skills can be successfully applied, whereas others use videos portraying less skillful com-
munication to trigger discussions (Kurtz et al., 1998).

Experiential Methods: Role Play, Simulated Patients, and Standardized

Patients
Role playing (also called simulation) has become a central part of many CSPs, offering participants
opportunities to practice specific strategies and/or skills (MacLean et al., 2017). During role play,
participants are provided with a pre-developed scenario and asked to act out the role of the patient
or clinician. These sessions may be facilitator led with peers observing and giving feedback (Bylund,
Brown, et al., 2010); others are one-on-one simulations with a participant and a standardized
patient.
Although clinical participants sometimes portray patients in role-playing sessions, many CSPs
employ standardized or simulated patients—trained volunteers, actors, or well patients who perform
the role of a patient in a CSP encounter. Although the terms “standardized” and “simulated” patients
(SP) are often used interchangeably, they have distinct meanings. Standardized patients are typically
required to follow formalized scripts. In contrast, simulated patients are provided with background
information about a patient case and asked to respond dynamically during the CSP encounter based
on their own perception of how a patient in this circumstance might act and feel. Typically, standard-
ized patients are employed in CSPs where consistency and reliability are prioritized—such as when
participants’ performance is being assessed or when the outcomes of a CSP are being evaluated
(Austin et al., 2006). Simulated patients may be more useful when dynamism and authenticity are
prioritized (Austin et al., 2006).
SPs may provide verbal or written feedback to participants and/or assess participants’ perfor-
mance using a standardized rubric (MacLean et al., 2017). Additionally, SP encounters may be video
recorded and reviewed to promote reflection. Video review allows learners to have a more accurate
perception of their own strengths and weaknesses and enables specific, tailored feedback (Kurtz
et al., 1998).
Role play is beneficial because it creates opportunities for learners to practice skills in a low-risk
environment and receive feedback from SPs, who can provide a patient’s perspective (Nestel et al.,
2010; Smith et al., 2018). However, there are also drawbacks to using SPs, particularly when it

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comes to student assessment. First, the sociolinguistic patterns recorded in SP encounters tend to
differ from those found in real-world encounters, limiting the validity of using SPs in high-stakes
assessments of communication skills (Atkins, 2019). Additionally, some researchers have argued that
assessments using SPs disadvantage English-as-a-second-language participants who—depending on
their clinical context—may communicate with patients primarily in another language (Atkins et al.,
2016). Furthermore, SPs may be instructed on how to provide feedback, meaning that their com-
ments often come to reflect the priorities of institutions rather than a true patient perspective (Peters,
2019).

Role Modeling and the Hidden Curriculum

Even as formal CSP curricula are implemented, role modeling continues to strongly influence cli-
nicians’ communication approaches. In fact, some research suggests that role modeling, rather than
formalized CSPs, is the preferred method of learning professionalism and communication skills
among clinical trainees (Byszewski et al., 2012).
The hidden curriculum is produced through organizational cultures and structures and includes role
modeling, as well as the “implicit rules to survive the institution such as customs, rituals, and taken
for granted aspects” (Lempp & Seale, 2004, p. 770). In some cases, lessons learned through the hid-
den curriculum contradict those taught through CSPs (Wear & Skillicorn, 2009). The hidden cur-
riculum has a powerful influence on students’ professional identity formation and communication
strategies (Monrouxe, 2010). Historically, these influences have been regarded negatively, identifying
the hidden curriculum as a source of loss of idealism and humanism among clinical trainees (Mar-
timianakis et al., 2015). However, more recent authors have argued that the hidden curriculum can
also be used to promote patient-centered communication (Hafferty et al., 2015).

Assessment and Evaluation of CSPs

Assessment and evaluation are critical to successful CSPs, though they may be used differently in an
educational program or an intervention. As CS education is more likely to be integrated into regu-
lar curricula, formal assessment is not always incorporated. However, ideally, CS education should
include both formative and summative assessments. Formative assessment includes efforts to develop
a “baseline” picture of participants’ communication skills or provide feedback to students in a low-
stakes environment. Summative assessments include exams for the purpose of grading students or
providing licensing certification. CS interventions are more likely to have an evaluation component
that is tied to a research question or hypothesis about changing communication behavior. In contrast
to assessments, which focus on individual learners, evaluations are used to understand the efficacy of
CS interventions in achieving their stated goals.
CSPs can benefit from an evaluation model. One that we have found to be particularly useful is
the Kirkpatrick evaluation model (Kirkpatrick, 1967; Konopasek et al., 2017). This triangle-shaped
model outlines four levels of evaluation, from bottom to top: Reaction, Learning, Behavior, Results.
The higher the evaluation level, the more complex the behavior change being evaluated.
Level 1, Reaction, is concerned with the learners’ satisfaction with the communication skills pro-
gram. Level 2, Learning, focuses on the knowledge that learners have gained as a result of attending
the communication skills program, with Level 2A referring to changes in attitudes and self-efficacy
and Level 2B referring to knowledge and skills (Konopasek et al., 2017). Level 3, Behavior, evaluates
whether a learner is able to take what they have learned and transfer it to the workplace. Level 4,
Results, is concerned with what distal outcomes may be influenced by CSPs. Unsurprisingly, it is
difficult to show the impact of CSPs on such distal outcomes as Level 4, as there are many other fac-
tors that can affect these outcomes. Table 14.1 shows that evaluation at Levels 2–4 can be conducted

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Table 14.1 Kirkpatrick’s Triangle Levels of Evaluation

Self-Report Measures Patient Evaluation Outside Observer Evaluation

Level 1: Reaction Post-course questionnaire – –

about satisfaction with
components of the
course
Level 2: Learning

2A: Attitudes and Attitudes toward – –

self-efficacy communication
Self-efficacy of
communication skills
2B: Knowledge and Knowledge test SP reports on A faculty member or
skills Behavioral intention or communication trained coder reports
skill usage skill usage during a on communication
standardized patient skill usage during a
assessment standardized patient
assessment
Level 3: Behavior Participant reports on their Real patients or family Faculty members rate
skill usage with real members report on the clinician’s skill usage
patients clinician’s skill usage based on live or recorded
visit with real patient
Level 4: Results Perceived stress Satisfaction Number of patient
Burnout Trust complaints
Empathy Adherence Number of malpractice
claims

by the learner, a patient or SP, or an outside observer and gives descriptions and examples of such
measurements.
In order to truly measure the impact of a program on learning, appropriate research designs must
be used for outcomes at Levels 2–4. For single group studies, a pre-post design is necessary, whereas
control group studies can measure outcomes at pre-post or post only.

CSPs for Patients

Clinical communication involves at least two people: the clinician and the patient. As such, it is
important that efforts to improve clinical communication include patients, as well as their family
members or friends who accompany them. Over the past 20 years, CSPs for patients have become
more common.
The first patient CSP used the PACE framework for patient communication skills (Cegala,
McClure, et al., 2000). The PACE framework has four components of effective patient commu-
nication. First, presenting detailed information means arriving at each consultation prepared with the
knowledge, information, and/or resources to respond to clinician inquiries in a specific and accurate
manner. Second, asking questions includes skills such as preparing a question list prior to consultation
and also encouraging the patient to ask questions that may develop once in the consultation room.
Third, checking understanding includes skills such as repeating back information, summarizing the
information as it is understood, and asking the clinician to repeat or clarify information. These skills

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are intended to improve retention and ensure that the patient and clinician have a shared under-
standing of the information being presented. Fourth, expressing concerns involves sharing conflicts,
issues, or concerns that may interfere with treatment and/or communication. Bylund and colleagues
later added a fifth component to the PACE curriculum, calling it the PACES curriculum. The new
component prepares patients to engage in shared decision-making by clearly stating preferences for
information, decision-making roles, and/or the treatment course (Bylund, D’Agostino, et al., 2010;
Bylund et al., 2017).
Significantly increased levels of effective and efficient communication were seen in patients who
received a PACE workbook compared to those who received a brief summary of the key points or
those who received nothing (a control condition; Cegala, McClure, et al., 2000). Trained patients
increased adherence to behavioral recommendations (e.g., diet, exercise, smoking cessation) and fol-
low-up appointments and referrals (Cegala, Marinelli, et al., 2000). However, Cegala and colleagues
also found that race and culture may play a role in patients’ responses to such CSPs (Post et al., 2001).
Although observing actual behavior better assesses patients’ real practice, such measurement is
not always feasible, particularly if one is working with patients outside of a single healthcare system.
Consequently, Bylund and colleagues developed an evaluation tool, the Patient Report of Communica-
tion Behavior, that can be used to measure patients’ self-reports of pre- and post-intervention skill
usage and intent to use the PACES skills (Bylund, D’Agostino, et al., 2010). Using this measure,
Bylund and colleagues (2010) have demonstrated the impact of the course on patients’ learning and
intent to use the skills and currently have a program launched to improve caregivers’ communica-
tion skills.
D’Agostino and colleagues’ (2017) systematic review found that most interventions provided
training materials to patients to do on their own (41%) or provided materials plus some sort
of individual coaching (41%). Only 38% of the interventions had an experiential component.
Nearly all of the interventions focused on multiple types of communication skills, as defined by
the PACES model. Overall, the authors concluded that patient CSPs are an effective approach to
increase patients’ active participation in healthcare interactions. Further, they noted that emotion-
ally focused communicative behaviors (e.g., expressing concerns) may be especially responsive to
training. Notably, they concluded that patients who complete CS interventions do not have longer
visits and receive more information from their clinicians than those who have not completed
CS interventions.

Humanistic and Cultural CSPs: Shifting From “Toolkit” to “Lens”

The CSPs discussed thus far conceptualize communication skills as a “toolkit” that clinicians can
draw from in their healthcare interactions. However, many communication scholars argue that this
conceptualization obfuscates an understanding of communication as an ongoing phenomenon of
humans constructing shared social realities (Craig, 1999). This obfuscation makes it difficult for
interlocutors, including clinicians, to identify how they are implicated in constructing shared realities
through communication. Thus, some scholars have advocated for a shift in the ways in which com-
munication is conceptualized in CSPs. Corresponding with the increasing emphasis on interpretive
and culture-centered approaches to communication (Dutta & Zoller, 2008), these nontraditional
CSPs position communication not as a toolkit but as a lens through which humans make sense of
health and one another.
CSPs that use communication toolkits allow for each interlocutor to understand how they can
alter specific knowledge, skills, and behaviors to influence communication outcomes. CSPs that use
communication as a lens allow for each interlocutor to understand how the reality of an interaction
is continually being constructed by knowledge, skills, and behaviors of all interlocutors, as well as
through cultural and structural contexts. Although communication toolkits can be used strategically

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in healthcare interactions and then “put away,” communication lenses are applied to the entire health
system and each interlocutor’s life. Table 14.2 summarizes how different CSP paradigms conceptual-
ize communication. Later, we build on our descriptions of CSPs thus far by outlining a suite of these
programs that fall along the spectrum from toolkit to lens.

Humanistic CSPs
Within medical education, “medical humanities” refers to interdisciplinary approaches that apply
the methods, concepts, and content from humanities disciplines (such as philosophy, literature, and

Table 14.2 Comparing Philosophical Underpinnings of CSPs

CSP Type Conceptualization Conceptualization of Desired Outcomes Challenges

of Communication Culture

Traditional Toolkit Culture is identifiable Improved Western Simplistic

through patient biomedical health understanding of
behaviors and outcomes communication
attitudes and Improved patient Marginalizes members
translated to Western satisfaction scores of non-white
biomedical health Western cultural
outcomes groups
Culture considered a
barrier to ideal health
outcomes
Cultural Typically Culture is identifiable Barriers to immediate “Others” non-white
Competence practiced through patient communication, middle-class cultures
as a toolkit, behaviors and such as language Essentializes culture
trending attitudes and differences, are
toward lens translated to Western addressed
biomedical health Interpersonal
outcomes connection between
Culture considered a patient and health
barrier to ideal health professional
outcomes
Cultural Lens One should practice A lifelong commitment Essentializes culture
Humility lifelong self-reflection to self-reflection Obfuscates structural
and critique of their and critique that inequities between
cultural norms denaturalizes power cultural groups
Relies on the feeling of dynamics and Difficult to evaluate
cultural safety dominant cultural using normative
norms evaluation methods
Mutual non-
paternalistic
partnerships with
communities
Locate health
expertise within the
community/outside
of Western medicine

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CSP Type Conceptualization Conceptualization of Desired Outcomes Challenges

of Communication Culture
Structural Typically Culture is not the Recognition of Essentialize individuals
Competence practiced cause of inequitable health outcomes into a structural
as a toolkit, experiences, which as consequences of experience without
trending are instead structural structures recognizing
toward lens consequences Denaturalization of individuals’ agency
health inequities Can create an
between cultures “endpoint” goal of
Ongoing commitment being competent in
to structural structure as a body
interventions of knowledge
at clinical and
community levels
Humanistic Primarily lens, Culture is reflected Reflection that leads Difficult to evaluate
Approaches sometimes upon and self- to understanding using normative
toolkit critiqued through how cultural evaluation methods
methods of arts and communication,
humanities social position,
and individual
experiences
influence health
communication

art) to investigate health and illness, with the goal of facilitating reflexivity, self-awareness, empathy,
listening skills, and ethical comportment among trainees and clinicians (Shapiro et al., 2009). By
drawing attention to the emotions, values, and lived experiences of patients and clinicians, medical
humanities are often positioned as an antidote to reductionism in biomedicine (Charon, 2006; Har-
ter & Bochner, 2009). Generally, medical humanities programs invite participants to read or observe
artistic works (such as poetry, short stories, or paintings) and reflectively discuss and write in response
to these works (Charon, 2006).
Humanistic approaches do not always require engagement with art or literature. For instance,
Pangh and colleagues (2019) asked nurses to write weekly reflections about positive and nega-
tive communication experiences with patients and found significant improvement in participants’
average scores on a questionnaire assessing communication skills. However, some proponents of
humanistic approaches argue that quantitative outcome measures are incompatible with the anti-
reductionist ethic that is core to the humanities, making the impact of these CSPs challenging to
evaluate empirically (Ousager & Johannessen, 2010). Humanistic CSPs encourage a lens concep-
tualization of communication and a reflexivity about how clinicians and patients engage with this
lens. Whereas humanistic approaches promote reflexivity about the role of culture in health com-
munication, several other CSP paradigms along the spectrum of toolkit to lens center culture as a
site of communication.

Cultural CSPs
Scholars and practitioners have long known that culture plays a role in health behaviors, making
intercultural communication vital to clinical communication. Globalization, the increasing diversity

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of the healthcare workforce, and the growing awareness of the stratification of health outcomes
along identity-based lines such as race, class, and gender have further highlighted the importance of
culture in healthcare interactions (Betancourt et al., 2002; Metzl & Roberts, 2014). Awareness of
the complex cultural landscape of medical practice has led to development and implementation
of various cultural CSPs. Such CSPs include cultural competency, cultural humility, cultural safety,
and structural competency. Although these CSPs each have different underlying assumptions and
goals, they all conceptualize culture as having a large influence on health communication. Some
cultural CSPs rely on the same philosophical underpinnings as traditional, competency-based medi-
cal education programs, extending the triad of “knowledge, skills, and attitudes” to the context of
culture as the site of communication.
In cultural CSPs, knowledge refers to the understanding of culturally diverse worldviews of indi-
viduals and groups, skills refers to the application of culturally appropriate communication, and
attitudes refers to understanding how one’s own culture conditions particular beliefs, values, and
outlooks (Sue, 2016). However, each cultural CSP conceptualizes communication and culture dif-
ferently on the spectrum of toolkit to lens.

Cultural Competency CSPs

Cultural competency is one approach to cultural communication that includes a broad range of CSPs
seeking to promote “the ability of individuals to establish effective interpersonal and working rela-
tionships that supersede cultural differences [through] recognizing the importance of social and
cultural influences on patients” (Beach et al., 2005, p. 356). Typically, cultural competency CSPs rely
on toolkit conceptions to position culture and communication as causes of health disparities. Cul-
tural competency CSPs train clinicians to tailor their communication strategies to patients’ cultural
backgrounds and/or to recognize implicit biases clinicians may have about specific cultural groups
(Kumagai & Lypson, 2009).
The Cultural Proficiency Workshop is one example of a cultural competency CSP (Carter et al.,
2006). This workshop was developed to increase awareness of health disparities, improve attitudes
and beliefs regarding cultural factors of delivering healthcare, and improve clinician-patient cross-
cultural communication. These outcomes are achieved through educational resources designed to
train clinicians to interact with culturally diverse patient populations, didactics regarding cultural
competence and health disparities, interactive self-assessment exercises, and experiential role-playing
activities. An evaluation study showed that workshop participants’ scores on a measure of cultural
awareness increased after the CSP (Carter et al., 2006).
However, similar to other toolkit CSPs, cultural competency CSPs have been critiqued for pre-
senting a reductionist view of communication. Such critiques argue that cultural competency con-
structs culture as a finite body of knowledge to be mastered by learning a toolkit of skills that can be
assessed through standardized quantitative measures (Tervalon & Murray-García, 1998). Informed by
these critiques, new models of cultural CSPs have focused instead on creating space for non-white
middle-class cultures to be embraced and for clinicians to reflect critically on how their perceptions
are shaped by their own cultures. An example of this type of approach is cultural humility, a lens
conceptualization of communication and culture.

Cultural Humility CSPs

Created in the context of healthcare with Indigenous communities, cultural humility CSPs were
developed to address the ongoing colonizing nature of how dominant cultural CSPs are imposed
upon Indigenous people. Cultural humility calls for health professionals to completely reconceptualize
their place in the health system with a lens of radical humility, a lifelong practice of self-reflection,

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self-implication, and accountability (Tervalon & Murray-García, 1998). In addition to continual self-
evaluation and critique of one’s culture, cultural humility CSPs have the goal of equalizing typically
paternalistic power dynamics between patients and clinicians and maintaining mutually beneficial
partnerships with communities (Foronda et al., 2016). Cultural humility CSPs conceptualize these
“goals” not as endpoints to be achieved but rather an ever-changing dynamic to continuously pursue.
Tervalon and Murray-Garcia (1998) outline several practices in cultural humility. The first prac-
tice is a commitment to the lifelong learner model in which humility allows one to genuinely say
“I don’t know what is best” and to seek the most appropriate avenue of health alongside patients.
The second practice involves patient-focused interviewing and care in which one continually works
to recognize the ways power imbalances manifest in health interactions and rectify them. The third
practice is community-based care and advocacy in which non-paternalistic partnerships are main-
tained between clinicians and community leaders and organizations. Through these partnerships,
clinicians come to learn how health expertise actually lies with the community and is outside West-
ern medical practice. The fourth practice emphasizes institutional consistency with these previ-
ously mentioned commitments, where reflection and critique are directed at institutions, as well as
individuals, paying attention to the demographic makeup of clinicians and continual multicultural
training efforts.
These commitments of cultural humility CSPs are aided by creating environments of “cultural
safety.” Cultural safety refers to an environment in which there is “no assault, challenge, or denial of
their [patient] identity, of who they are, or what they need” (Barlow et al., 2008, p. 5). An example
of a cultural humility CSP is Chang et al.’s (2012) QIAN model. QIAN 謙 (Chinese for humble-
ness) is an acronym emphasizing “self-Questioning and critique, bidirectional cultural Immersion,
mutually Active-listening, and the flexibility of Negotiation” (p. 269, emphasis in the original).
Although this program embodies the pursuit of cultural humility goals, it also is subject to critique
for essentializing health disparities into culture instead of recognizing how culture is shaped by
structure. Addressing this critique, “structural competency” CSPs have been developed that present
health communication as negotiated within larger structures rather than cultures.

Structural Competency CSPs

Structural competency is the understanding of how clinically defined symptoms, attitudes, or diseases
are consequences of larger structures, such as “health care and food delivery systems, zoning laws,
urban and rural infrastructures, medicalization, or even the very definitions of illness and health”
(Metzl & Hansen, 2014, p. 128). Structure also refers to the epistemological assumptions that shape
biomedical interactions and that are communication conduits for some patients and barriers to oth-
ers. Structural competency CSPs are often more in line with a toolkit conceptualization, given that
there are certain skills health professionals can become competent in applying to health interactions.
Metzl and Hansen (2012) outline five skills of structural competency CSPs:

• Recognizing the structures that influence health decisions that are prevalent in patients’ lives
outside of the clinical interaction.
• Developing a fluency in interdisciplinary understandings of how structures impact health (e.g.,
the ability to understand how illness that may have only been seen as clinical, such as high cor-
tisol levels, is actually influenced by the experience of racism).
• Cultivating the ability to understand how a patient’s culture is shaped by structures without
dismissing the importance of culture to patients.
• Observing and imagining structural interventions by involving oneself in community advocacy
organizing and creating new interventions that address the health consequences of structural
inequities.

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• Practicing structural humility in which, similar to cultural humility, one makes a commitment
to constantly examine the limitations of one’s own knowledge, as well as the dynamic experi-
ences of structure for patients, rather than a stagnant application of structure onto them.

Although structural competency is in line with toolkit conceptualizations, some structural com-
petency CSPs also embrace a lens conceptualization in which there is no end point at which one
becomes “competent.” Rather, one commits to the lifelong pursuit of recognizing the influence of
structure on health and continually engaging in interventions.
The CSPs discussed throughout this section all consider culture as a site for communication, with
structural competency extending to how culture is influenced by communication at macro levels.
Although there are similarities in these approaches, each CSP differs in how communication is con-
ceptualized on a spectrum from toolkit to lens, allowing health professionals to examine different
aspects of health communication outside clinic walls.

Challenges in Developing Successful CSPs

CSPs have resulted in many improvements in clinical communication and patient outcomes. Still,
limitations and challenges remain in developing effective CSPs. In this section, we review some of
the primary challenges and critiques of CSP literature that have been advanced.
First, many CSPs lack a solid grounding in communication theory (Brown & Bylund, 2008).
This is understandable, given that most CSPs are not developed by researchers with a background
in communication. Still, the lack of theoretical basis in many CSPs creates difficulties. For instance,
without theory it is difficult to know which parts of the clinical communication process are most
important or why. Two notable exceptions are the Comskil model, which uses goal plan action and
sociolinguistic theories (Brown & Bylund, 2008), and the COMFORT model, which draws on
communication accommodation theory (Goldsmith et al., 2020; see also Chapter 9, this volume).
These and other CSPs that draw from communication theory are encouraging movements within
the field.
A second challenge across CSPs relates to the difficulties of creating behavior change in clinical
practice. Although many CSPs have been effective in promoting behavioral change in simulated
contexts, they have been less successful in producing changes in clinical practice behaviors and
patient outcomes (Bylund et al., 2018). Furthermore, despite the inclusion of CSPs in medical and
nursing education, research suggests that medical students’ communication skills still decrease as they
progress in their training (Rosenbaum, 2017). This decline may be attributable to the hidden cur-
riculum and trainees’ increasing reliance on medical jargon (Rosenbaum, 2017), as well as systems
issues such as mandates for short appointment lengths and reimbursement scales that reward proce-
dures at higher levels than counseling (Rider et al., 2018; Rosenthal, 2018).
A third challenge relates to the conceptualization of communication and communication skills
as employed in traditional, competency-based CSPs. Most of the CSPs discussed in this chapter
position communication as a skillset or toolkit to be implemented in interactions. However, some
authors problematize this conceptualization of communication skills, as well as the use of the term
“training” to describe the work done in CSPs. For example, Salmon and Young (2011, 2017) argue
that by implying that communication can be divided into standardized, discrete skills or tools, most
CSPs reflect overly simplistic understandings of communication. When CSPs reduce communica-
tion to sets of recommended skills, they may obfuscate a key premise of much communication schol-
arship over the past 30 years: that communication is not merely the exchange of messages, it is also
the process through which humans construct shared realities (Craig, 1999; Dutta & Zoller, 2008).
Moreover, the designation of pre-specified tasks or behaviors as preferred “communication skills”
can distract from the ways in which communication is a dynamic phenomenon and deeply tied to

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relational, institutional, and cultural contexts (Bylund, 2017). As Salmon and Young (2017) illustrate,
gestures as simple as maintaining eye contact (a “skill” recommended in many CSPs) can convey dif-
ferent messages—from threat, to intrusiveness, to compassion—depending on these contextual fac-
tors. Bylund (2017) extends critiques of the published literature by noting that the term “training”
suggests that CSP participants are communication novices in comparison to “expert” CSP instruc-
tors and, in doing so, undervalues the knowledge participants have developed throughout their
lives. The prevailing notion of communication skills as pre-specified behaviors may arise partially
from the pressure to develop reliable assessment methods for CSPs in the era of competency-based
medical education (Ousager & Johannessen, 2010). However, some critics argue that this conceptu-
alization of communication skills, however well intentioned, can ultimately promote a reductionist
perspective on communication and “de-skill” CSP participants (Salmon & Young, 2017). With these
critiques in mind, alternative CSPs, such as those that promote cultural humility, shift away from a
toolkit and towards a lens conceptualization of communication. This allows for an understanding of
how all realities within health interactions are co-constructed through the lens of communication
and influenced by communication outside of the clinical walls as well.

Future Directions for Research on CSPs

Drawing on this synthesis of research literature on CSPs, we now offer five specific areas for further
research. First, particularly for patient CSPs, research on dissemination and implementation of evi-
dence-based programs is needed. Dissemination and implementation efforts that leverage technol-
ogy to reach patients who face barriers to accessing in-person CSPs are especially vital for promoting
health equity.
Second, studies that examine the transferability of communication skills into real-world prac-
tice, as well as the sustainability of such skill transfers, will be important next steps. Although the
impacts of CSPs on participants’ performance within SP encounters and observed structured clinical
examinations (OSCEs) using SPs have been well documented, the evidence of the transfer of skills
to real-world practice remains limited. Similarly, there is a paucity of longitudinal studies examining
the long-term effects of CSPs (Kissane et al., 2012). One promising area for this research could focus
on clinicians with low baseline levels of communication skills, as these clinicians may be more likely
to benefit from participation in CSPs (Bylund et al., 2018).
Multilevel interventions that include a communication skills component are a second area where
additional research is needed. One reason that the benefits of CS interventions may have had limited
transferability to real-world contexts is that they typically address only individual behavior, without
altering the organizational context in which clinician-patient interactions unfold (Martimianakis
et al., 2015; Rider et al., 2018). Future research should examine how multilevel interventions, which
incorporate changes at the organizational level in addition to CSPs for patients and clinicians, affect
communication skill and outcomes.
Given the complexities and interconnectedness of modern healthcare systems, a third priority
for future research should be developing additional CSPs for allied health professionals. Despite
increased research on CSPs for pharmacists, physical therapists, and other allied health professionals
(Parry, 2008; Wallman et al., 2013; see also Chapter 16, this volume), more research is needed in
these areas, particularly as care coordination and interprofessional collaboration become increasingly
core aspects of healthcare delivery (see Chapter 17, this volume).
Finally, future work is needed to explore the implications of CSPs and assessment within the con-
text of a globalized, culturally diverse world. In offering standardized definitions of what constitutes
good communication, some CSPs may obscure the profound diversity of communication values and
behaviors of patients, families, and clinicians. More research is needed to develop CSPs that honor
diverse communication practices and assess participants in equitable and just ways.

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Communication scholars are uniquely placed to effect change in clinician-patient communica-

tion. By bringing our theoretical expertise in health, interpersonal, and organizational communi-
cation to bear, we can work with our clinician colleagues to develop innovative CSPs to benefit
patients, families, and clinicians.

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 15
PATIENT-PROVIDER
COMMUNICATION AND
HEALTH OUTCOMES
Kelly Haskard-Zolnierek, Morgan Snyder, Rabecca-Kimberly
Hernandez, and Teresa L. Thompson

Patient-provider communication is a central component to overall healthcare. Health outcomes,

including clinical outcomes, patient adherence, patient satisfaction, and malpractice, have been
found to be positively influenced across various healthcare settings when providers and patients com-
municate effectively with each other (e.g., exchange information, are more involved in care, express
empathy, etc.). Furthermore, it is valuable to consider other factors such as health disparities and
patient characteristics such as obesity and substance abuse and how these affect patient health out-
comes. To promote positive patient outcomes, the patient-provider relationship should be viewed as
a collaboration of negotiated mutual goals between the patient and provider (Tekeste et al., 2019; see
also Chapter 12, this volume). Considering the reality that healthcare providers have the opportunity
to address a wide variety of issues among a large number of patients, effective communication is
essential to ensuring efficient quality of care to all patients.

Importance of Health Outcomes

Physical and mental health-related outcomes have been considered by many researchers for their
relationship to provider-patient communication. One of the challenges inherent in this research
area is the heterogeneity of measures of provider-patient communication. Another consideration is
the variety of health outcomes considered, including recovery, coping with pain, daily functioning,
quality of life, diabetes-related outcomes, and blood pressure.
One of the earliest studies examining the relationship of provider-patient communication to
health outcomes was conducted by Kaplan et al. (1989). The researchers conducted four stud-
ies of patients with different chronic illnesses, and in all cases, physician-patient interactions were
audiotaped and assessed for aspects of communication, including control, information sharing, and
expressing emotion. Health outcomes examined included patient health status and self-reported
health and physiological indicators for diabetes and hypertension such as hemoglobin A1c (HbA1c)
and blood pressure. Findings indicated that across the four samples, when patients were more
involved in the visit, they experienced better control of their diabetes and blood pressure. Greater
expression of affect and more frequent giving of information by physicians were also associated with
better health outcomes, measured both physiologically and via self-report.
One of the first quantitative reviews of this topic was conducted by Stewart (1995). She included
21 studies in her review and found several elements of effective history taking that related to patient
health outcomes. The elements of history taking that were important included physicians asking

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many questions about the patient and their perspective and showing empathy. It was also important
during history taking for patients to express themselves fully and believe that a full discussion of their
concern occurred. Other elements of communication that were important included effective discus-
sion related to the management plan, in which the patient was encouraged to ask questions and was
able to gather information in the decision-making process. Stewart reviewed numerous outcomes
in the 21 studies, most of which demonstrated that elements of history taking are, indeed, related to
health outcomes. Findings from two of the studies, for example, indicated lower patient blood pres-
sure when physicians gave information (Orth et al., 1987) and lower patient anxiety when physicians
included the patient in decision-making (Fallowfield et al., 1990).
This work was followed by another review conducted by Di Blasi et al. (2001), who examined
25 randomized controlled trials, most of which focused on patients with hypertension and pain.
These authors focused on studies of “context effects,” a term for placebo effects that stemmed from
the doctor-patient relationship. Studies that were included examined the influence of patient expec-
tations shaped through positive communication from the physician about health and treatment and
the physician’s reassuring manner. Half of the studies found positive effects on health outcomes. The
authors addressed study heterogeneity and methodological issues as explanations for the mixed find-
ings (Di Blasi et al., 2001).
More recently, Riedl and Schubler (2017) completed a systematic review of the relationship of
physician-patient communication to health outcomes, focusing on 40 studies published between
2000 and 2015. These studies used a variety of designs, including qualitative methods and rand-
omized controlled trials. The authors considered studies measuring varied aspects of physician-
patient communication, including providing information and building a strong physician-patient
relationship. In one study in the review, Cabana et al. (2006) trained physicians in communication
skills through an asthma healthcare educational curriculum. The trained physicians asked about
patients’ worries, promoted good health behaviors to their patients, and engaged in goal setting with
their patients. Results showed that higher levels of information giving from the physicians were asso-
ciated with fewer asthma symptoms in patients. In another study included in the review, Parchman
et al. (2010) used an observational method with a 1-year follow-up to examine patient activation
and physician shared decision-making with patients with diabetes in association with three clinical
outcomes. The researchers completed a path analysis showing that physician decision-making style
was associated with patient activation, which was then associated with medication adherence and
improved HbA1c and LDL cholesterol levels.
Not all studies have found effects of physician-patient communication on health outcomes.
Cooper et al. (2011) conducted a randomized controlled trial in which both physicians and patients
received training in communication skills to promote shared decision-making and patient involve-
ment in care. They focused on the outcome of blood pressure control in an ethnic minority and low
socioeconomic status population. Blood pressure control was not statistically significantly lower for
the intervention group, but the change was in the expected direction and could have been a clini-
cally meaningful change (Cooper et al., 2011).
Fewer studies have examined nonverbal communication and health outcomes. Henry et al.
(2012) reviewed and meta-analyzed the relationship between nonverbal communication and patient
health outcomes, including mental (n = 6 studies) and physical health status (n = 5 studies), but no
consistent relationships were detected. The authors did suggest the need for long-term studies that
examine the relationship between nonverbal warmth, for example, and outcomes such as patient
adherence, which may potentially serve as a mediator on a path between nonverbal communication
and health outcomes.
In addition to the classic studies and reviews of the literature, it is important to consider more
recent studies in this field. Dambha-Miller et al. (2019) examined the relationship between perceived
provider empathy after type 2 diabetes diagnosis and cardiovascular events and mortality in patients

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with type 2 diabetes. The researchers found that higher physician empathy scores were associated
with lower rates of patient cardiovascular events, but the difference was not statistically significant.
The researchers did find a somewhat lower risk of death over a 10-year follow-up in those patients
who reported higher provider empathy.
In another recent study, Ruben et al. (2018) reported their findings regarding the relationship
between physician-patient communication and pain outcomes. In this study of veterans, participants
reported their healthcare providers’ communication and interpersonal skills and also reported their
pain intensity and its interference with daily activities. The researchers found that more positive pro-
vider communication was related to lower pain intensity and less restriction due to the pain.

Provider-Patient Communication and Patient Adherence

In addition to actual health outcomes, one of the consequences of provider-patient communication
that is of great concern to healthcare providers is patient adherence to treatment recommendations.
Although the early research on the topic was more likely to use the term compliance, consistent with
a patriarchal, controlling, provider-centered perspective, the turn toward patient-centered medicine
brought with it an emphasis on shared decision-making between the provider and the patient and
the realization that patient behavior in accord with the agreed-upon treatment was more adequately
conceptualized by the term adherence. Adherence may include such behaviors as taking medica-
tions; engaging in lifestyle changes associated with diet, exercise, or smoking; attending follow-up
appointments; and seeking out screenings or immunizations. Lack of patient adherence is a source
of great frustration to care providers and has serious impacts on patient health. It is also associated
with high medical costs and the wasting of scarce medical resources. Patient rates of nonadherence
are high and of significant concern (Thompson & Haskard-Zolnierek, 2020).
Numerous factors affect patient adherence to treatment recommendations, only some of which
are related to communicative processes. Many care providers place an exclusive blame on patients for
lack of adherence, describing them as noncompliant patients. This focus ignores the structural and
interactional influences that typically play more of a role in varying levels of patient adherence. As
summarized by Thompson and Haskard-Zolnierek’s (2020) review essay, this focus ignores the costs
of medication, the complexity of treatment regimens, and the difficulty of such behavior changes as
weight loss, exercise, and smoking cessation. It also ignores familial and peer factors that influence
how the patient behaves away from the medical context. Families and peers may encourage adher-
ence or may make adherence more difficult. Less complex and costly treatment regimens are more
likely to be followed by patients than are more complex ones. The same is true of treatment sugges-
tions that are easier to follow. There is also generally more adherence to treatments for acute than for
chronic conditions (DiMatteo, 2004).
Lack of adherence may also be intentional or unintentional. A patient may intend to engage
in physical therapy exercises on a daily basis but end up having so many other responsibilities that
they do not do so. A patient may intend to take medications as scheduled but may forget to do so.
A patient may plan to quit smoking but find it too difficult to follow through on those intentions.
Conversely, a patient may not have any intention of following the treatment plan upon which the
doctor and patient apparently agreed. Or the patient may initially plan to adhere to the plan and then
later decide that they are feeling much better and do not actually need to complete the antibiotic
prescription or take the blood pressure medication. A patient may be in denial about mental health
problems and not take an antidepressant. There are varying degrees among all these more extreme
options, of course.
Implicit in the description of the different ways in which one may engage in nonadherence is the
difficulty of and variance in measuring adherence. Researchers most frequently rely on patient self-
reports of treatment adherence. As with any self-report measure, this is subject to social desirability

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bias and memory problems. Researchers may assess whether a patient has filled a prescription, but
that does not tell them whether the patient took the prescription, took it as scheduled, or completed
it. Occasionally, researchers are able to examine medicine levels in patients’ blood or other measures
of metabolites to determine medication adherence. A small number of studies have relied on actually
observing patients taking antiretroviral medications in clinics, but that, too, is difficult (see Thomp-
son & Zolnierek, 2020).
Research that adequately measures both adherence and communication is sparse and is com-
plicated by the difficulty of measurement of both communication and adherence (see Chapter 36,
this volume, for elaboration on macro-level communication measures that are inadequate as they
miss crucial nuance in meaning). Some of the research on this topic has been qualitative, which
makes conclusions about causality difficult. Furthermore, some of this research has been conducted
by scholars who are trained in medicine rather than in communication, and they use broad assess-
ments of “good” communication or “more” communication, which obscures important theoretical
aspects of human communication behavior. However, meta-analyses and systematic reviews of the
communication-adherence link consider study quality and have demonstrated significant relation-
ships between some aspects of communication and patient adherence. Most notable have been those
conducted by DiMatteo (2004; see also DiMatteo et al., 2002; Zolnierek & DiMatteo, 2009) and
by Haynes et al. (2008).
The Zolnierek and DiMatteo (2009) meta-analysis provided the most thorough examination of
specifics of the communication process as they relate to adherence. A total of 55 of the included
studies measured both task- and psychosocial-related aspects of communication. For example, studies
involving task-related communication used ratings by patients of physician explanations or instruc-
tions or physicians’ use of collaboration. Studies of psychosocial communication used judgments of
content-filtered voice tone (rated for positivity), for example. The data indicated that several vari-
ables were associated with increased adherence, including giving thorough information; giving clear
explanations; active listening; statements of friendliness, solidarity, and nonmedical information; and
freely offered information. One variable associated with lower adherence was lack of information
about unpleasant side effects of medication.
In addition to the focal relationship of communication and adherence, some research has exam-
ined variables that moderate this link. Race and language discordance and levels of health literacy are
relevant factors, as is the stigmatizing nature of the medical condition. Patients who are HIV posi-
tive, for instance, are frequently unwilling to go to public clinics or pharmacies to receive treatment
because of stigmatization. Type of healthcare provider may also moderate the adherence-communi-
cation relationship, in that adherence may be lower for physical therapists than for oncologists, for
instance. Oncologists are treating life-and-death issues, whereas physical therapists are not.
The perceptions of adherence by both providers and patients have also been examined. Despite
the evidence of the role of communication on adherence, it is not unusual to find that patients look
at their adherence as an autonomous decision that they have made (Laws et al., 2012). Providers
frequently inaccurately estimate patient adherence and are reluctant to initiate discussion of the issue
until lack of patient adherence becomes too obvious to ignore (Thompson & Haskard-Zolnierek,
2020).
Some interventions have been developed to train providers to more effectively communicate
with patients in an attempt to improve shared decision-making and subsequent adherence. Only
about half of the studies that have been published on this topic showed improvement in adher-
ence rates. In their systematic review of interventions designed to increase adherence, Nieuwlaat
et al. (2014) found several facilitating characteristics. Interventions that address multiple barriers to
adherence, that are tailored toward the specifics of a patient’s reasons for lack of adherence, and that
simplify the regimen, enhance patient understanding of the regimen, and address patient beliefs all
improve adherence. By far, the most effective are tailored interventions. At least one study trained

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patients in various aspects of communication and increased adherence, with favorable results (Cegala
et al., 2000). It is surprising that such an approach has not been taken more frequently.
In the last couple of decades, more technologically sophisticated ways of measuring, influenc-
ing, and monitoring adherence have been developed. Such technology as Internet follow-up (when
patient adherence is assessed by contacting patients on the Internet), mobile apps, text messaging,
electronic monitors of adherence, smart pillboxes, and automated call reminders are all alleged to
improve adherence, although many of these studies assume rather than actually measure adher-
ence. Thus, adherence is not a true dependent variable in these studies, and the conclusions must
be seen as highly tentative. These findings, however, do appear in searches of “adherence and
communication.”
Overall, it is clear that some relationship exists between provider-patient interaction and patient
adherence. The significance of patient adherence on health outcomes indicates the need for addi-
tional study.

Provider-Patient Communication and Patient Satisfaction

Patient satisfaction is another frequently used outcome measure in this field and is often used as an
indicator of overall quality of healthcare (Ong et al., 1995). Provider-patient communication has
been strongly related to patient satisfaction in several seminal studies (e.g., Buller & Buller, 1987;
Ong et al., 1995). Healthcare providers must effectively communicate about the symptoms, diagno-
sis, and treatment options with the patient, while also showing kindness, empathy, and warmth, as
these aspects of provider-patient communication are also highly associated with patient satisfaction
(Buller & Buller, 1987). Research has shown that many aspects of provider-patient communication
are related to patient satisfaction and that interventions to improve communication skills can improve
patient satisfaction. These studies will be discussed in this section.
It is important for providers to effectively communicate biomedical information with patients,
including collecting information about symptoms and medical history and giving information about
the diagnosis and treatment options. However, it is also important that the healthcare provider give
the patient adequate time to share their experience, ensuring that the patient is an active participant
in their care, as provider-dominant communication styles have been found to be negatively related to
patient satisfaction (Buller & Buller, 1987; Burgener, 2020). In fact, one study found that patient sat-
isfaction was associated with patient-prompted information giving rather than physician-prompted
information giving (Ishikawa et al., 2017). Provider listening and provider responsiveness have also
been shown to be associated with patient satisfaction (Henry et al., 2012; Richmond et al., 2009).
Listening to the patient and letting the patient have an active role in discussions are important aspects
of patient-centered communication that may play a role in patient satisfaction and health outcomes.
In fact, patient satisfaction has been shown to mediate the relationship between patient-centered
communication and emotional well-being (Jiang, 2017).
Studies have also shown that affective and interpersonal aspects of physician-patient communica-
tion are extremely important during the medical visit. Zachariae et al. (2003) showed that attentive-
ness and empathy from physicians were associated with patient satisfaction during oncology visits.
Hesse and Rauscher (2019) showed that affectionate communication in a medical visit, including
care statements and listening behavior, was related to patient satisfaction. An affiliative communica-
tion style has also been shown to be associated with patient satisfaction; this includes behaviors such
as provider friendliness, empathy, and encouragement (Buller & Buller, 1987). Nonverbal com-
munication is also associated with patient satisfaction (DiMatteo et al., 1986; Griffith et al., 2003).
For example, positive nonverbal communication such as warm and supportive voice tones (Haskard
et al., 2008a; Henry et al., 2012), as well as competent and interested voice tones (Haskard et al.,
2008a), were also associated with patient satisfaction. Therefore, although technical aspects of a

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medical visit are important, interpersonal aspects of provider-patient communication are also associ-
ated with patient satisfaction with care.
Some studies have shown that interventions that aim to improve communication between
healthcare providers and patients can be efficacious for improving patient satisfaction (Dwamena
et al., 2012). In one study, an intervention included demonstrations, interactive teaching ses-
sions, and practice sessions focused on relationship-centered communication. The intervention
led to increased physician empathy and improved scores of patient satisfaction (Boissy et al., 2016).
Another study showed that physician communication training led to increased patient satisfaction
with information giving and overall care (Haskard et al., 2008b). Communication skills training
interventions may also be effective if they are delivered via computer, which could increase the ease
of implementation. For instance, Roter et al. (2012) reported that communication skills training
delivered through a computer was effective for improving patient satisfaction. Taken together, these
studies suggest that communication skills training interventions are beneficial for improving patient
satisfaction.

Malpractice and Communication

Malpractice litigation and the perceived errors that lead to it are important concerns in almost all
areas of healthcare delivery. In only a small number of malpractice suits is a medical error actually at
the heart of the accusation (Beez et al., 2019).
The communication–malpractice link is frequently studied by examination of the records of
closed litigation cases in a particular area of medicine. These closed cases are anonymized, and
themes are identified across the cases by rigorously trained experts. Some research on the issue relies
instead on qualitative interviews with patients, administrators, and care providers. Across these stud-
ies, communication and documentation issues are the most frequent themes. Communication and
malpractice are associated with each other in at least three salient ways: direct, mediated/moderated,
and through defensiveness in anticipation of feared litigation. Much research indicates that commu-
nication problems cause actual errors leading to malpractice litigation. This occurs when healthcare
providers do not adequately share information with patients (Moore & Slabbert, 2013). Errors can
also occur when patients have not provided relevant information to providers (Mindachew et al.,
2014). These, then, are direct links between communication and litigation.
Less direct links are evident in research that indicates that patients are more likely to file mal-
practice litigation when there is dissatisfaction with provider communication. The same medical
error might occur in two different provider-patient dyads, but patients who have received more
adequate information (Moore & Slabbert, 2013) and with whom providers have interacted with
more compassion (Quirk et al., 2008) will be less likely to subsequently sue. Trust is a moderating
variable between communication and likelihood of malpractice litigation. Communicative behaviors
affect trust, which affects likelihood of suing (Choy & Ismail, 2017). Rarely is provider lack of skill
or medical knowledge relevant (Beez et al., 2019). Research directed toward nurses has found that
not asking for clarification when orders are unclear, not reporting a patient’s change of status, or not
raising concerns about the behavior of another provider may be malpractice and may lead to litiga-
tion (Brown, 2016).
Behaviors such as interruptions of patients are positively related to likelihood of litigation, in that
more interruptions by the provider are associated with a higher likelihood of the patient suing if
there is a medical error (Moore et al., 2017). Subtle wording makes a difference, such as if a nurse
communicates that a C-section is “urgent” (must be done within 30 minutes) vs. “emergent” (may
be done after 30 minutes). The malpractice literature is replete with examples of one care provider
changing the wording used by the original provider. These are team issues and must be mitigated
through more effective information sharing within teams (see Chapter 17, this volume).

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Provider failure to obtain an adequate medical history is also associated with litigation, in that in
such instances medical errors are more likely. Note also that some of the factors mentioned, such
as lack of information sharing, are those that cause actual errors, whereas others are communicative
issues, such as lack of compassion, that make patients more likely to sue if an error has occurred.
The third relationship between malpractice and communication is more complicated. This is
based on defensiveness. Rabinovich-Einy (2011) noted that the culture of litigation that has devel-
oped in recent decades leads to defensive communication that subsequently creates litigious con-
texts. Physicians do not make prognoses because of fear of litigation and thus do not provide full
information to patients. Fear of malpractice accusations functions to create behavior that in fact does
lead to malpractice accusations: a self-fulfilling prophecy. Rabinovich-Einy aptly describes this as
the shadow of malpractice law and argues that (a) it is the dominant form of communication in the
ERs that she studied, and (b) it also serves as a shield. As such, it is a source of professional authority
and protection.
Researchers are not unique in noting the relationship between malpractice and communication;
malpractice attorneys are well aware of the role of communication in litigation. The literature is
replete with articles that are not based on data but that present advice from malpractice attorneys
advising care providers to engage in the kinds of positive communicative behaviors noted earlier.
Similarly, risk management experts are now a part of most health organizations. They advise and
work with providers and patients as medical errors are settled. Fundamental to the understanding of
malpractice issues, of course, are the actual medical errors. Some of the errors themselves are caused
by communication issues, whereas others are not. Nicking an artery during surgery is a medical
error, but operating on the wrong leg is probably related to communication issues. This is especially
true of miscommunication between providers. Patient handovers are also common sources of com-
munication issues that may result in litigation (Bulau, 2013; see also Chapter 17, this volume).
As mentioned previously, communication and documentation are two of the key themes men-
tioned in almost all the malpractice research. Relating to documentation is the issue of electronic
health records (EHRs). More reliance on healthcare information technology is associated with less
litigation (Sharman et al., 2019).
Numerous programs and interventions have been developed to attempt to train care providers
to engage in communicative behaviors that will help them avoid negative reactions likely to lead to
litigation. Few of these show much long-term success and sustainability, although “communication
and resolution” programs facilitated by experts are more effective than are most others (Kass & Rose,
2016). Most healthcare organizations are now cognizant of the need to communicate immediately
and with candor about medical errors (Bell et al., 2015). Overall, it is evident that the best way to
avoid malpractice litigation is by patient-centered care. As we describe next, several patient variables
are relevant to this.

Patient Variables, Provider-Patient Communication, and Outcomes

Race/Ethnicity
Some previous studies have documented disparities in provider-patient communication among
different racial and ethnic groups, and these differences in provider-patient communication may
contribute to inequalities in health outcomes and differences in adherence (van Ryn, 2002). One
study examined provider-patient communication for men diagnosed with prostate cancer and found
that Caucasian patients reported higher scores on a measure of physician trust and better inter-
personal treatment than African American patients (Song et al., 2014). Another study analyzed
audio-recorded medical visits in which physicians discussed adherence to antiretroviral (ART) medi-
cations with patients and found differences by patient race (Laws et al., 2014). Specifically, physicians

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discussed ART adherence more with Black and Hispanic patients than with Caucasian patients, and
they showed more verbal dominance with Black patients.
Some research suggests that patient-centered communication may vary across demographic
groups. Past research has shown that Hispanics and Asians reported lower patient-centered com-
munication than Caucasians (Singh et al., 2018). Including patients as active participants during the
medical visit and engaging in active listening to work through barriers is important. If these posi-
tive aspects of communication occur less with historically underserved population groups, there is
greater potential for inequalities in health outcomes (see Chapter 35, this volume).
Implicit attitudes and biases held by healthcare providers may contribute to disparities in pro-
vider-patient communication and ultimately disparities in clinical outcomes. Implicit attitudes are
held without conscious awareness and may be held by healthcare providers (Sabin et al., 2009).
A systematic review conducted by Maina and colleagues (2018) discussed implicit racial bias in
healthcare providers. Studies discussed in this review showed that healthcare providers who had
high levels of racial or ethnic implicit bias showed less supportive communication and less patient-
centeredness (Blair et al., 2013; Penner et al., 2016). In one of these studies, Black patients whose
physicians had higher implicit bias were less satisfied and expected to have greater challenges with
adherence (Penner et al., 2016).

Socioeconomic Status
Research has shown that socioeconomic status is related to aspects of provider-patient communica-
tion. A systematic review showed that when communicating with patients with lower socioeco-
nomic status, providers gave less information related to the diagnosis and the treatment and used
more biomedical talk along with less socioemotional talk (Willems et al., 2005). In addition, a study
with a large, nationally representative sample found that participants with lower incomes were more
likely to report poor communication (i.e., less clear explanation, listening, and respect) and less
participation in decision-making, as well as reporting decreased satisfaction with their healthcare
provider (Okunrintemi et al., 2019).

Obesity and Weight Stigma

There is some evidence that a patient’s weight may affect certain aspects of provider-patient commu-
nication and could thereby affect outcomes. One study showed that patients with obesity reported
that their physicians did not spend enough time with them and did not listen carefully to them
(Richard et al., 2014). Although healthcare outcomes were not addressed in this study, other research
has examined outcomes such as adherence and satisfaction for patients with obesity.
One study showed that healthcare providers perceive that patients with higher body mass index
(BMI) will be less adherent to medications (Huizinga et al., 2010). These negative perceptions may lead
to differences in communication between healthcare providers and patients with overweight or obesity
and could lead to patient experiences of stigma. Some commonly reported stigmatizing situations
include healthcare providers telling patients to lose weight but not providing any specific advice for
the patient and healthcare providers blaming unrelated physical problems on the patient’s weight status
(Ferrante et al., 2016). These stigmatizing situations could affect outcomes such as patient satisfaction.
Some previous studies have documented differences in provider communication with patients with
overweight or obesity. One study showed that providers built less emotional rapport with these patients
(Gudzune et al., 2013). Rapport building is an important aspect of provider-patient communication
and is associated with important healthcare outcomes (Beck et al., 2002). Another study examined
provider-patient communication during prenatal care visits. The researchers coded audio-recorded
visits using the Roter Interaction Analysis System and found differences in communication between

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women with overweight and obesity compared to women without overweight or obesity. Specifically,
healthcare providers used fewer self-disclosure statements during conversations with women with obe-
sity and used fewer approval and concern statements with women with overweight (Washington Cole
et al., 2017). These affective components of provider-patient communication, including rapport, self-
disclosure, and statements of approval and concern, are important aspects of patient-centered care and
are associated with patient satisfaction (Williams et al., 1998). These factors are equally as important
to the outcomes of patients who have overweight or obesity.
Communication regarding weight is an important aspect of a medical visit. It is important that
discussions regarding a patient’s weight status are completed thoughtfully and carefully to avoid the
patient feeling stigmatized based on their weight. The language that healthcare providers use while
discussing weight with patients is important. A recent systematic review found that words such as
“unhealthy weight” or “BMI” are most preferred and that words such as “fat” and “obese” specifi-
cally are not ideal for weight-related discussions (Puhl, 2020). The specific language used may pre-
dict outcomes such as patient satisfaction with care and adherence to treatment.

Substance Use
Another specific communication topic that providers may face in their care of patients is substance
use. In these cases, providers have the opportunity to effectively address problematic substance use
and behaviors with their patients and provide a brief intervention if necessary. Traditionally, treat-
ment for substance use is conducted through counseling sessions over several weeks or months
at a time; however, providers have the opportunity to provide direct and immediate brief inter-
ventions to patients who demonstrate problematic substance use behaviors (U.S. Department of
Health and Human Services, 2005). Brief interventions are short one-on-one counseling sessions
used with the intent of lowering an individual’s substance use to more appropriate levels (Moyer &
Finney, 2005). When a patient’s overall substance use is lower, they are less likely to experience the
negative outcomes associated with risky substance use, such as injuries, domestic violence, or sub-
stance use-related medical problems (U.S. Department of Health and Human Services, 2005). Brief
interventions have been shown to be effective in reducing substance use and promoting an overall
improvement in health status for those who were previously at risk for problematic substance use
(Kaner et al., 2009; Moyer & Finney, 2005).
Although previous research has demonstrated the importance of patient-provider communication
when discussing substance use, barriers to this communication can negatively impact the quality of
care being provided (Denny et al., 2003; Hingson et al., 2013). This was demonstrated in work by
Denny et al. (2003), which investigated the prevalence of providers’ advice to adult patients on quit-
ting smoking or alcohol use during a routine checkup. These researchers found that the frequency
of advice was notably low, demonstrating how providers are potentially missing opportunities to
provide brief intervention to at-risk patients (Baldwin et al., 2006; Denny et al., 2003; Hingson
et al., 2013). This lost opportunity could mean that those patients at risk are less likely to receive the
communication they need to make behavior changes with significant health implications.

Pathways: From Communication to Outcomes

Tying all these outcomes to communicative processes may be facilitated by reliance on work by
Street and colleagues, recently summarized by Schulz and Jiang (2021). On the basis of a discussion
of six key dimensions of provider-patient interaction (fostering healing relationships, exchanging
information, responding to emotions, managing uncertainty, making decisions, and enabling patient
self-management), Epstein and Street (2007) offered a framework for patient-centered communica-
tion (see also Street et al., 2009, and Chapter 12, this volume).

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This body of work identifies the pathways directly and indirectly linking communicative variables
to health outcomes. In some cases, communicative behaviors will directly influence a health outcome,
such as when clear explanations and reassurance relieve anxiety and enable better sleep. These more
immediate outcomes are proximal outcomes. A patient may feel more satisfaction with the provider
and experience more trust as a result of aspects of the provider’s communication. It is the mediating
(intermediate) effects of these proximal outcomes, however, that influence health. We noted earlier
in this chapter that communication affects adherence, but it is the clarity of explanations that allows
the impact on adherence and, ultimately, health. Patients who do not understand explanations cannot
adhere to them, and their health, therefore, is unlikely to improve. Providers’ decision-making styles
also impact patient self-efficacy, which then influences patient control and uncertainty (Schulz & Jiang,
2021). Patient control and uncertainty ultimately affect patient quality of life (Arora et al., 2009).
Jiang (2017) recently demonstrated that patient-centered communication influences patient satisfac-
tion, which then affects emotion management and subsequently affects patients’ emotional well-being.
Knowledge of these proximal and intermediate pathways should be helpful as we move to more
fully understand the impact of communicative behaviors on health outcomes of relevance.

Directions for Future Research

Future research in patient-provider communication and health outcomes might include studies that
incorporate assessment of both verbal and nonverbal communication in clinical interactions that
measure health outcomes and patient adherence. Measurement of aspects of communication and
outcomes, such as adherence, matters in interpreting research findings in this field; thus, studies
using validated measurement tools are necessary. Patient satisfaction is a commonly studied outcome
in provider-patient communication, as it is both a self-reported measure (and therefore relatively
easy to collect) and a measure related to healthcare quality. However, more studies focusing on
clinical health outcomes and adherence will move the field forward, particularly because of some
inconsistent past findings in studies examining the relationship of communication to clinical health
outcomes. Longitudinal study designs would also be beneficial to assess both changes in communi-
cation and provider-patient relationship factors over time, as well as change over time in long-term
outcomes such as adherence and health outcomes. Finally, it will be valuable to continue studies of
underserved populations and those who experience disparities in health outcomes, as communica-
tion barriers may serve as an important mediating factor.

Conclusion
In summary, this chapter has provided extensive evidence of the relationship between provider-
patient communication and various outcomes of importance to the process of medical care. It is
important for both providers and patients to pay attention to the importance of communicating
efficiently and effectively with each other, via engaging in shared decision-making, exchanging
information, providing affective and socioemotional communication, and building rapport. If health
outcomes are an ultimate endpoint of medical care, the communication process provides a feasible
way to achieve better outcomes.

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 SECTION IV

Healthcare Provider and

Organizational Health
Communication
 16
THE MULTIPLE VOICES
OF COMMUNICATION IN
HEALTHCARE
Margaret F. Clayton, Pearman D. Parker, and Lee Ellington

Communication is a dynamic, ever-evolving process occurring across the healthcare system. Com-
munication is critical to promote patient care and care coordination and to facilitate desired patient
outcomes. This chapter not only will focus on provider communication perspectives but also will
address the range of voices of those who play an important role in healthcare delivery. We present
health communication goals, similarities, and challenges for providers and others critical to the
patient and family healthcare experience.
Providers who communicate with patients and their families as part of the healthcare team include
nurses, advanced practice nurses, nurse scientists and certified nurse aides, physicians and physi-
cian assistants, chaplains and spiritual healers, social workers, therapists (recreational, occupational,
speech, physical), genetic counselors, pharmacists, dieticians, and specialty teams (dialysis, radiation,
dental, optometry). Others who interact with patients and their families within the healthcare sys-
tem include housekeeping staff and volunteers. All contribute to addressing individualized concerns
of patients and families.
This chapter cannot be considered inclusive of all possible healthcare professionals or of all those
working within the healthcare system. For example, we do not address psychotherapeutic communi-
cation offered by psychologists and others because this type of communication exchange is typically
considered as treatment. We also limited our exploration of communication with staff, such as com-
munication with food service workers or patient transport personnel, due to the sheer number of
staff roles involved in healthcare. We have included, however, housekeeping based on the regularity
and consistency of patient and, indeed, provider contact with persons employed in this important
role, especially during any pandemic.

Nurses, Advanced Practice Nurses, Nurse Scientists, Certified

Nurse Aides

Nurses
Nurses are licensed by the state in which they practice. Nursing scope of practice is determined by
educational preparation and type of nursing license (e.g., licensed practical nurse, LPN; registered
nurse, RN; or advanced practice registered nurse, APRN). Nurses hold educational degrees ranging
from an associate degree in nursing to a bachelor’s degree in nursing to multiple types of master’s
degrees (e.g., nursing education, nursing informatics) to two terminal degrees: doctor of nursing

DOI: 10.4324/9781003043379-20 229

 Margaret F. Clayton et al.

practice (DNP), reflecting advanced nursing practice with diagnostic and prescriptive privileges, and
doctor of philosophy (PhD), reflecting scientific preparation and contributions to nursing science.
Some nurses hold both terminal degrees; schools of nursing are moving rapidly toward this dual
offering. Specialty credentials for advanced practice nursing are usually in the form of certificates,
often managed by the American Association of Colleges of Nursing (AACN), indicating advanced
training and examination in areas such as midwifery, pediatric, family, adult, or acute care, and they
are required for advanced nursing practice and licensure.
Nurses are trusted by the public to act in the patient’s best interest and consistently remain one
of the most trusted healthcare professions (Gallup, 2019). Nurse communication content is broad,
as their overarching mission is to care for persons, families, and communities, addressing physical,
psychosocial, spiritual, and even financial topics that contribute to wellness. Nurses interact with
patients more frequently than other team members do, developing evolving relationships and engag-
ing in communication about physical, emotional, and spiritual issues that may change over time as
illness progresses (Clayton et al., 2017a; Ellington et al., 2018). Nurses also support family members
during emotionally charged and sensitive life events such as the birth of a child and at the end of life,
presenting especially challenging applications of their communication skills (Clayton et al., 2017b;
Molenaar et al., 2018). Common nursing communication encounters involve instructing patients
and families about when to report symptoms and how to take medications, explaining health-related
events, and helping to interpret and reinforce information about diagnoses and prognoses. Other
communication encounters consist of teaching clinical skills such as intravenous medication admin-
istration and dressing change methods to caregivers in the homecare environment. Although most
nurses are comfortable discussing physical questions and concerns, areas of challenge include discus-
sions of spirituality, psychosocial concerns, and patient suicidal thoughts and plans (Clayton et al.,
2017b; Clayton et al., 2019). Communication challenges are also influenced by contextual differ-
ences unique to the patient, such as the care setting, patient diagnosis, and patient prognosis. Finally,
nurses interact with all members of the interdisciplinary team, relaying information and patient/
family concerns to healthcare team members as needed and appropriate. In recognizing the need for
strong communication skills to complete these tasks, basic nursing education communication com-
petencies have been identified over the last several decades. These competencies include creating a
therapeutic relationship, teaching and providing information, offering support and empathy, eliciting
patient/family values and preferences, responding to emotions, and interacting with interdisciplinary
teams (American Association of Colleges of Nursing, 2015, 2018; Enlow et al., 2010). Commu-
nication skills have been incorporated into post-employment education programs for at least two
decades, often focusing on communication in specialty areas such as oncology nursing or hospice
and palliative care nursing (Barrere & Durkin, 2014).

Advanced Practice Nurses

Communication issues particular to DNP-prepared advanced practice nurses (also known as nurse
practitioners) are similar to those of physicians and physician assistants, including time constraints and
diagnostic and prognostic explanations. Similar to physicians, APRNs must also address the potential
of lawsuits. Clarity of communication and empathy rather than quality of care per se has been shown
to be a factor in many lawsuits (Yankowsky, 2017; see also Chapter 15, this volume).

Nurse Scientists
PhD-prepared nurses interact with patients, families, interdisciplinary healthcare providers, and
other research team members during the conduct of nursing science. Nurse scientists bring their sci-
entific preparation, as well as clinical experience, to the research team, providing valuable expertise

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in both principal investigator and co-investigator roles. Nursing research encompasses the concep-
tualization, design, implementation, and evaluation of studies, addressing issues related to patient,
family, and community care. Collaboration between nursing and health communication scholars
is ideal due to shared research interests and commonality of research design, methods, and theory,
which enhance the richness of scientific exploration of communication processes and outcomes. In
addition to conducting behavioral research, nursing scientists also conduct implementation studies,
bench science, and clinically focused studies using qualitative, quantitative, comparative, and other
approaches as appropriate.

Certified Nurse Aides

Certified nurse aides (CNAs), also known as certified nursing assistants, provide supportive patient
care, such as assistance with activities of daily living (e.g., eating and bathing), and must be super-
vised by a licensed nurse. CNA education varies by state but often consists of a training course
and a competency exam. A high school diploma may or may not be required. Very little research
has been conducted on communication processes used by CNAs despite a recognition of the need
for effective communication skills, and there is little communication skills content in certification
classes. Some employment-related communication offerings do exist, especially for CNAs working
with specialty populations such as dementia patients (Beer et al., 2012). To date, what little CNA-
focused communication research exists has often explored nurse-CNA collaboration and has been
conducted in nursing homes or extended care settings, where CNAs deliver 80%–90% of routine
care (Eaton et al., 2020; Madden et al., 2017; Pennington et al., 2003). Interdisciplinary communi-
cation within the healthcare team is a known challenge for CNAs (Clayton et al., 2021). Reasons for
interdisciplinary team communication difficulties are grounded in the attitudes of other staff toward
the relative merit of the CNA contribution to patient or resident outcomes and power differentials
between CNAs and other team members (Lai et al., 2018).

Physicians and Physician Assistants

Physicians
Physicians (doctor of medicine, MD; doctor of osteopathic medicine, DO) are licensed healthcare
providers who have completed advanced graduate clinical education and a subsequent residency or
fellowship in a specialty area. Physicians interact with patients and their families in a multitude of
ways, including information sharing, eliciting concerns, decision-making, treatment planning, and
communicating both good and bad news (Clayton, Dingley, et al., 2017; Song et al., 2017; also
see Chapters 12 and 13, this volume). As the focus of healthcare has moved toward patient/family-
centered communication that embraces a holistic approach to care, physicians are increasingly seen
as important members rather than the sole leader of the healthcare team. Indeed, medical education
often includes engaging in interprofessional education with other students representing multiple
disciplines, such as nursing and pharmacy, as a way to become better informed of the roles and
responsibilities of other healthcare team members (Babiker et al., 2014; Foronda et al., 2019; Head
et al., 2014; Reis et al., 2015).
Many employment sites and professional educational programs include basic communication
skills training (Coyle et al., 2015; Markin et al., 2015; Pehrson et al., 2016). Examples include
course-based learning using video recording and subsequent discussion of primary care consultations
and more formal communication skills-based training programs for existing employees. One such
program is UCope (Utah Certificate of Palliative Care Education; offered by the University of Utah)
designed to address difficult conversations in palliative care for interdisciplinary providers. VitalTalk,

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another skills training option, provides courses designed to help clinicians communicate about seri-
ous illness empathetically and effectively in a culturally sensitive manner.

Physician Assistants
Physician assistants (PAs) are certified rather than licensed providers who have completed specialized
graduate education. Similar to APRNs, PAs provide primary and specialty care. Although there is a
vast literature on patient-PA communication, overall communication benefits and challenges for PAs
can be considered similar to those of APRNs and physicians (Taylor et al., 2019).

Chaplains and Spiritual Healers

Chaplains
Spiritual care is an integral part of many patients’ illness experiences. Even those who do not nor-
mally attend religious services may turn to hospital chaplains in times of distress. Prior to the 1960s,
most chaplains had a Protestant theological education, but chaplain education and scope of practice
has since expanded (Cadge, 2019). This evolution requires chaplains to provide interfaith spiritual
care to address the diverse religious and spiritual needs of patients and their families (Liefbroer et al.,
2017). Much of pastoral healthcare communication research has been reported in the end-of-life
and palliative care literature, when individual and family culture, religion, and treatment preference
become integral to healthcare (Sinclair, 2015; Speck & Herbert, 2017). Indeed, because addressing
spiritual concerns is a core component of palliative care, chaplains have long been recognized as vital
members of any hospice and/or palliative care team (Damen et al., 2019; National Coalition for
Hospice and Palliative Care, 2018). Other members of the healthcare team, as well as patients and
families in intensive care units and pediatric units, have also recognized the contribution made by
chaplains in addressing existential distress (Simeone et al., 2020).
Despite efforts to educate healthcare professionals about the importance of assessing the spiritual
needs of patients, this task can be daunting. Many providers report being uncomfortable in identi-
fying spiritual needs, as they lack training and confidence in how to engage in conversations with
patients and families about their spirituality and how spirituality interfaces with decisions and beliefs
regarding healthcare (Best et al., 2016; Clayton et al., 2019; Isaac et al., 2016). Increased research
and clinical tool development are underway to support providers in deriving an understanding about
their patients’ spiritual needs (e.g., spiritual screening, spiritual history taking, spiritual assessment;
Balboni et al., 2017). It is critical that all healthcare providers are able to engage in basic, patient-cen-
tered conversations about spiritual needs, beliefs, and practices. A basic spiritual history/assessment
can assist the healthcare team in evaluating when to include chaplains and other spiritual healers in
communication consultations (Puchalski & Romer, 2003). Chaplains are highly trained professionals
who can uniquely and holistically address patient and family existential, relational, and emotional
needs (Cunningham et al., 2017).
In addition to supporting the spiritual needs of patients and families, chaplains also support staff
and the healthcare team (Timmins et al., 2018). For example, hospital nurses frequently confront
death and distraught families, which contributes to increased stress, burnout, and compassion fatigue
(see also Chapter 18, this volume). Anecdotally, an example of a hospital chaplain caring for nurses
occurred when a hospital chaplain brought the ICU nursing staff pizza and sat visiting for a while
to let them debrief after a long night in the ICU with multiple patient deaths and no possibility of
a dinner break. Exemplifying recognition of nursing stress, this totally unexpected demonstration
of pastoral caring strengthened the nursing-chaplain relationship, illustrated the value of spiritual

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caring to the nurses, and resulted in more nursing requests for patient spiritual consultations that
facilitated well-being for patients and their families. Empirically, recent findings suggest that having
a chaplain on the healthcare team or talking with a chaplain is associated with decreased nurse stress
and increased job satisfaction (Liberman et al., 2020). Overall, although there is growing evidence
that spirituality may serve as an important source of strength for patients and families, and possibly
healthcare providers, more research is needed to understand how chaplain communication can lead
to enhanced well-being and social connectedness regardless of specific faith (Ellington et al., 2015,
2017; Waubanewquay et al., 2018).

Spiritual Healers
Even though chaplains contribute a great deal to the patient and family communication, other
spiritual healers also need to be considered. Spiritual healers such as shamans of the Navajo tribe,
Hawaiian lomilomi healers, Thai Indigenous healers, and German Heilpraktiker offer unique spiritual
guidance and support that directly contribute to the health and well-being of patients (Juntaramano
et al., 2019; Matthews, 1887; Stöckigt et al., 2015; Waubanewquay et al., 2018).
One prime and classic example illustrating the need to embrace spiritual healers during com-
munication with healthcare teams is the case of Lia Lee, a Hmong pediatric patient with Lennox-
Gastaut syndrome, documented in Anne Fadiman’s book The Spirit Catches You and You Fall Down
(Fadiman, 1997). Lia’s treatment ultimately suffered from the communication collision between
her parents’ spiritual beliefs and Western medicine. The result was devastating. Lia suffered a grand
mal seizure at age 4 where she lost most of her higher brain function and remained in a persistent
vegetative state until she was 30, ultimately dying from seizure complications. Fadiman captured
the clash of traditional and modern medicine in her book, which is now used in medical schools
and medical anthropology programs across the country to demonstrate the importance of inte-
grating cultural sensitivity (including the use of spiritual healers) into healthcare communication
(Fox, 2012).

Social Workers
Social workers are integral to communication between physicians, patients, and families across a
variety of inpatient, outpatient, and community-based healthcare settings. This is especially true
when patients face life-limiting illnesses, complex needs for care coordination, family conflict, and
abuse. Social workers’ professional roles may vary but tend to include managing patient care plans,
connecting patients with community resources, and providing clinical interventions for patients and
families where health intersects with social and behavioral problems (Fraser et al., 2018). Compared
to other members of the healthcare team, social workers receive enhanced educational training
in counseling, crisis intervention, and patient advocacy. This educational training prepares social
workers for complex person-environment situations. Healthcare team members often turn to social
workers for help with challenging patient and family situations, with social workers providing
extensive time and intervention resources (e.g., family meetings, follow-up sessions; Coquillette
et al., 2015).
Social workers’ approaches to care typically include conducting an ecological assessment of the
patient and family context, engaging community resources, and identifying and addressing social
determinants of health (Maramaldi et al., 2014; Muskat et al., 2017). Social workers bring a unique
educational background, clinical perspective, and skill set to their communication with interdiscipli-
nary healthcare teams and to their care of patients and families. They rank communication among
their highest professional activities (Glajchen & Gerbino, 2016; Weisenfluh & Csikai, 2013).

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Therapists
Physical, occupational, speech, and recreational therapists have been encouraged to adopt a patient-
centered approach, involving patients and their families as much as possible, and are integral members
of the healthcare team. All types of therapists require excellent communication skills to establish
patient relationships and to achieve patient-centered care that addresses patient goals (Leach et al.,
2009; Miciak et al., 2018). Core competencies for recreation therapists include effective interpersonal
communication with patients; these competencies have been emphasized as essential to the devel-
opment, implementation, and evaluation of the course of treatment in recreation therapy (Austin,
2009). Occupational therapists have investigated how communication skills affect therapy, encourag-
ing strong interpersonal skills (Borghi et al., 2016; Yu et al., 2018). Similar to the educational prepa-
ration of other healthcare team members, the educational preparation of therapists often includes
interprofessional education (IPE) so each therapy student may learn the roles of other healthcare
team members (Fleischer et al., 2019). Therapists often work as part of a healthcare team, shifting
emphasis from one therapy specialty to another as patient needs change. Because most therapy is a
process that involves more than one encounter, effective communication with the patient allows
feedback over the course of treatment (Corey, 2008). However, complications arise when goals of
the patient, family, and provider differ, potentially creating exceedingly difficult conversations (Clay-
ton, 1996). One example may be seen when a spouse caregiver wants the patient to receive curative
therapy yet the provider has suggested hospice care, knowing cure is unrealistic, while the patient is
in denial of both their illness and prognosis and as such does not engage in goal-related discussions of
possible treatment and/or palliative care options. Therapists are uniquely placed to help families sort
out options and to help families manage the strong emotions associated with differing goals of care.
Physical, occupational, speech, and recreational therapists face multiple communication chal-
lenges (e.g., setting goals with patients who may not be able to fully participate in the discussion
due to physical and or cognitive incapacity). Aphasic patients and cerebral vascular accident (stroke)
patients present unique communication challenges, including ensuring understanding and eliciting
patient preferences (Leach et al., 2009). Those who have lost normal speech (possibly due to a stroke
or traumatic brain injury) may require extra time to allow them to form words and may require tech-
nological assistance (Cooper & Ireland, 2018). Those with paralysis, especially facial paralysis, may
not be able to offer the nonverbal cues so integral to communication processes. When nonverbal
cues are absent as in the situation of facial paralysis, the result is loss of emotional facial expression.
This loss of facial expression has triggered research into innovative computer-assisted technology
assessment and methods to improve communication interactions (Ayoub et al., 2020; Dusseldorp
et al., 2019; Salari et al., 2020).

Genetic Counselors
There are many counseling specialties. We focus on genetic counselors due to the communica-
tion challenges they often confront. The role of genetic counselors is to work with individuals and
families to help them understand the genetic contributions to health and disease. In the last decade,
an explosion of genetic information has been available to both providers and patients. This includes
information about genetic sequencing, precision medicine based on gene variants and mutations
in oncology care, and popular products available for purchase by consumers such as 23andMe and
AncestryDNA. This scientific evolution has created a tremendous need for communication scholars
to help providers and patients understand and effectively use risk-based genetic information (Peter-
son et al., 2018). It has also created ethical dilemmas because unexpected results or family “secrets”
may come to light. This requires emotional support of families and communication skills training
for providers and counselors.

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Genetic counseling sessions require the presentation of unfamiliar abstract genetic information,
and counselors are met with patient and family anxiety and uncertainty about disease vulner-
ability (Peterson et al., 2018). How words are used in these emotionally laden situations becomes
especially important. For example, consider the emotional valence of these terms: abortion versus
termination, mental retardation versus global developmental delay, breaking bad news versus dis-
cussing unexpected news, possessing a genetic mutation versus a genetic alteration, and quantify-
ing the risk of an event versus the chance of an event. Moreover, genetic testing is likely to have
implications beyond the patient, but information flow to family members about relative risk often
does not occur. This creates situations where early screening and testing may not take place. Con-
sider the communication skills required to explain that although a woman does not have a known
breast cancer genetic mutation that is the cause of her breast cancer (BRCA1 and BRCA2 muta-
tions), her genetic testing results are “indeterminate.” This is loosely translated as “you are still at
risk, but we don’t know why” and has implications for early and comprehensive testing of blood
relatives. Research has shown that when women do not comprehend the relative risk and sig-
nificance of their indeterminate genetic testing results, they may not share this important genetic
information with family members. One consequence may be that women with indeterminate
results may not encourage subsequent follow-up testing for sisters and daughters (Himes et al.,
2016, 2019). The same lack of sharing of genetic testing results due to a lack of understanding of
relative risk has been shown to occur in families affected by hereditary nonpolyposis colorectal
cancer (Ersig et al., 2011).
Given the rapid breakthroughs and availability of genetic information, coupled with (a) the nov-
elty of genetic information and terminology to the lay public and (b) the tendency for providers
to use a didactic approach with a large volume of mathematical statements, health literacy is an
important consideration and presents a challenge to all clinical genetic care providers (Peterson
et al., 2018). Health literacy is covered in depth elsewhere in this handbook (see Chapter 28). Early
research by Roter and colleagues (2007) concluded that genetic counselors need to simplify their
vocabulary and sentence structure and engage in a more interactive dialogue to increase patient and
family understanding. These recommendations continue to be especially important given that those
with lower health literacy skills are less knowledgeable about genetic testing and may make geneti-
cally related decisions that are actually inconsistent with their personal values (Peterson et al., 2018).

Pharmacists
Pharmacists interact with most patients taking medications, whether it be in the hospital, in hospice
settings, or in community pharmacies (i.e., chains, grocery stores, independent pharmacies). Com-
munication needs differ greatly across settings (Shah & Chewning, 2006; Tjia et al., 2015). Hospital
pharmacist-patient interactions, when they occur, can be rapid and complex, with the pharmacist
providing medication education (e.g., dosage and timing, possible side effects, and potential medi-
cation interactions), addressing patient concerns, discussing changes in medications, and fostering
adherence (Chevalier et al., 2017). Although community pharmacists may discuss the same issues
as hospital pharmacists, they may also serve an important role in health promotion. In addition to
answering questions directly related to specific medications, community pharmacists may be asked
health-related questions about treatment for minor ailments or questions about diet and exercise (Al
Aqeel et al., 2018). Regardless of the setting, scholarship and practice across the last two decades
has stressed a patient-centered approach to pharmacist-patient communication; this has included a
heavy emphasis on health literacy skills (de Oliveira & Shoemaker, 2006; Wali et al., 2016). In 2016,
patient-centered communication was included as part of the Accreditation Council for Pharmacy
Education standards of pharmacy education (Accreditation Council for Pharmacy Education, 2015).
Although communication skills training is advancing in pharmacy programs, there remains little

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research on how pharmacist-patient communication affects patient outcomes; this encourages future
research opportunities (Chevalier et al., 2019).

Dieticians
Dieticians are integral to patient care and well-being. Much of the early communication literature
on the role of the dietician focused on diabetic education and management (Cant & Aroni, 2008).
Recently, the role dieticians play in both acute and chronic illness nutritional management has been
increasingly recognized. Examples include patients undergoing bariatric surgery and weight loss or
those with late-stage cardiovascular disease, Crohn’s disease, and other diagnoses with significant
nutritional consequences (Endevelt et al., 2013; Endevelt & Gesser-Edelsburg, 2014). Dietician-
patient communication has been shown to be more effective when using a holistic, patient-centered,
and tailored approach rather than the earlier models of dietician-directed education (Endevelt &
Gesser-Edelsburg, 2014).

Specialty Teams
Many specialties such as dialysis teams, radiation departments, dental services, and others advocate
interdisciplinary patient-centered communication (Halkett et al., 2016; Reilly et al., 2013; Walker
et al., 2019). We use dialysis telehealth care as an exemplar. Some patients report feeling security
and comfort with their dialysis team on telehealth platforms similar to what they experience during
their in-person visits, whereas other patients prefer in-person communication (Rygh et al., 2012).
Moreover, telehealth is a care delivery mode that may require providers to obtain enhanced training
to use effectively.
The role of specialty team communication in dentistry extends to public health. For instance,
dentists are well situated to discuss the uptake of the human papilloma virus (HPV) vaccination to
lower the risk of HPV-associated oropharyngeal cancer (Walker et al., 2019). Although evidence
is somewhat mixed regarding dentists’ efficacy in their ability to promote HPV vaccination among
their patients, many professional organizations acknowledge the role of dentists in promoting aware-
ness and education (Walker et al., 2019). In a similar fashion, eye care specialists such as optometrists
may collaborate with other healthcare team members and are in a unique position to refer patients
to specialists for suspected diagnoses of hypertension, diabetic care, and other disorders revealed
through routine ocular examinations (Handler et al., 2015; Long et al., 2020; Vernon et al., 2011).

Housekeeping
Housekeeping staff employed by hospitals, nursing home/extended care facilities, and rehabilitation
centers interact with patients on a regular basis. Traditionally, these roles are viewed as “low status”
jobs with meager wages and poor working conditions (Lund, 2011). However, the contribution
of these frontline workers to patient care is becoming increasingly recognized. Anecdotal evidence
indicates that housekeeping staff often provide companionship to patients and offer necessary quality
of life–related care such as adjusting TV channels, volume levels, and temperature settings; getting
a blanket; and repositioning a bedside table. Clinical experience also suggests the value of conversa-
tions with housekeeping staff for residents living in long-term care facilities with respect to “being
known” as a unique individual. As an example, an eminent, well-known professor from a local
university became a resident of a skilled nursing facility close to the end of his life. On one occasion
when the family visited their father, the housekeeper spoke with the daughter in a building corridor,
saying, “Oh, you’re here to visit. I always call him Dr. you know, it’s his title and makes him feel
good.” This short conversation illustrated the relationship between the housekeeper and the resident

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and the effort the housekeeper had gone to to learn about the resident’s life prior to his being admit-
ted to the skilled nursing facility.
The informal scope of housekeeping staff can extend beyond these somewhat limited actions.
First, housekeeping staff may provide patients with a sense of stability due to their consistent presence
on the unit (Swanberg et al., 2016). In some cases, especially in hospitals, housekeeping staff may
see and interact with patients more consistently than other staff members or clinicians (Swanberg
et al., 2016). This allows for the development of meaningful relationships between housekeepers and
patients as documented by the 15-minute documentary video Keepers of the House (Klevansky et al.,
2019). Second, housekeeping staff may also serve as informal interpreters for clinicians in countries
like South Africa where various dialects may not be understood by clinical staff (Smith et al., 2013).
The housekeeping staff not only translate the language of the patients but also communicate about
patients’ behaviors on the unit once rounding is complete (Smith et al., 2013). Although empirical
literature on housekeeper communication is limited, their valuable contributions to patient quality
of life should not be overlooked. Indeed, hospital management teams have noted the importance of
housekeeping as an integral piece to the overall patient experience (McCaughey et al., 2012). This
is further exemplified by housekeeping staff who made a vital contribution to patient and provider
safety through the necessary cleaning and sanitation of healthcare environments as a result of the
COVID-19 pandemic, when such efforts became even more important than they normally are.

Volunteers
Volunteers serve in both hospital and community settings, providing needed services and support
to patients and families. Regardless of the setting or service, what volunteers have in common is a
willingness to interact with patients and families through sharing their expertise and time, yet this
essential contribution remains understudied. Volunteers read to children, hold newborns when par-
ents must be absent, sit with patients and families at the end of life, offer social support for elders,
assist sexual assault victims, and assist adults with intellectual disabilities to develop skills facilitating
physical and social integration (Brighton et al., 2017; Cameron et al., 2020; Mihelicova et al., 2019;
Venema et al., 2018).
Many foundations and organizations have diagnosis-specific volunteer programs. For example,
the American Cancer Society solicits breast cancer survivors to assist newly diagnosed breast cancer
patients in their program Reach to Recovery (American Cancer Society, 2020). These survivors
are well positioned to support newly diagnosed breast cancer patients by listening with compassion
and sharing with empathy. The organization Hearts Everywhere Reaching Out for Children, Inc.
(H.E.R.O.) is dedicated to improving the lives of children and adolescents who have or are affected
by HIV/AIDS (H.E.R.O. for Children, 2020a). More than 250 H.E.R.O. volunteers offer their
time, energy, and compassion to programs specifically designed for the children and adolescents—
these include Back to School Bash and Camp High Five (H.E.R.O. for Children, 2020b). These
volunteers incorporate useful skills and techniques to help children and adolescents combat fear,
worry, and stigma related to HIV/AIDS.
Volunteers, regardless of their specific area of interest, have an important health communication
role in giving information, providing social support, and acting as a therapeutic link to help patients,
families, and caregivers manage life with a variety of illnesses. In light of their importance to health-
care communication processes, they also present opportunities for future research.

Future Research
The provision and study of health communication requires examination of all members of the
healthcare community, including the important contributions of those working within the healthcare

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system but not always considered part of the healthcare team (e.g., CNAs, housekeeping staff, and
volunteers). The exclusion of these and many other roles is reflected in the literature. In an effort to
move the science of healthcare communication forward, we must consider in-depth explorations of
the unique contributions made by persons in each of these roles and the interdependent relation-
ships among them. This unique approach to understanding the strengths of these overlooked roles
may lead to greater overall patient-family satisfaction and improved patient healthcare experiences.

Conclusion
An array of healthcare community members enhances the healthcare experience, promotes safety,
optimizes wellness, and minimizes the impact of illness for patients, their families, and even commu-
nities. This improvement and optimization of healthcare requires interpersonal communication with
patients and their families, as well as interprofessional and interdisciplinary communication among
healthcare providers and researchers. Although most providers are comfortable discussing their own
specialty and/or professional knowledge, many do not feel comfortable stepping out of their own
realm, for example, by engaging in spiritual discussions or conveying genetic risk. Interprofessional
education may provide a way to increase awareness of team roles, resulting in greater referral and
collaboration among healthcare team members and ultimately benefitting patients and families, and
it presents opportunities for future research (Bonello & Morris, 2020; Peiris-John et al., 2020).
Yet even within disciplines, challenges remain. One example is discussions of genetic testing
results, requiring substantial numeracy and health literacy skills with subsequent tailoring of mes-
sages to ensure understanding by both providers and patients. Further, when one considers addi-
tional factors such as the social determinants of health (e.g., poverty, racism), comorbidities, family
conflict, and remote healthcare delivery (telehealth, whether desired by remotely living patients or
necessitated by COVID-19-related restrictions), further challenges emerge. These ancillary factors
require all providers, regardless of discipline, to examine their own implicit biases, as well as to obtain
pragmatic education on how to effectively use electronic delivery platforms. This training will help
providers develop rapport with patients and families, provide patient teaching, discuss treatment
options, offer comfort, and converse with other members of the healthcare system. Similarly, there
is merit in examining why some healthcare roles are marginalized by members of the healthcare
team, despite known contributions, such as housekeepers and CNAs. Factors relating to racism,
cultural bias, and socioeconomic status should be examined within the healthcare team in terms of
how they impact interdisciplinary collaboration, in addition to the more common investigations of
how these factors influence patient care. To conclude, optimal delivery of healthcare requires strong
patient- and family-centered communication skills and an appreciation of varied roles across the
healthcare system.

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 17
INTERPROFESSIONAL
COMMUNICATION
Healthcare Teams, Patient Handoffs, and
Multiteam Systems

Kevin Real, Anne Ray Streeter, and Marshall Scott Poole

For most healthcare providers, communicating with other professions is a regular element of their
work. However, there are many barriers to interprofessional communication, including interdis-
ciplinary silos and status differences that diminish the effectiveness of care quality and patient care
delivery (O’Daniel & Rosenstein, 2008; Poole & Real, 2003; Real & Poole, 2011). As such, the
increasing attention from the Institute of Medicine1 (IOM, 2015) and Joint Commission (2005) to
these issues underscores the importance of interprofessional communication processes for outcomes
in healthcare systems. Effective interprofessional communication in healthcare teams, patient hand-
offs, and multiteam systems enables healthcare professionals to be better informed, correctly inter-
pret the information they receive, ask questions, and reduce the effect of hierarchy or disciplinary
status in their interactions with other professionals (IOM, 2015; O’Daniel & Rosenstein, 2008).
Interprofessional communication is critical in clinical settings, where patient information must
be clearly communicated among the variety of healthcare practitioners involved in even a single
patient’s care. O’Daniel and Rosenstein (2008) estimated that patients may interact with up to
50 different employees, including nurses, technicians, physicians, and housekeeping staff, during
a four-day hospital stay. The challenges of collaboration in healthcare are well known: shifting
team memberships, temporal instability, fluid boundaries, hierarchy, and caring for multiple patients
simultaneously across different floors, units, and even buildings (IOM, 2015; Real et al., 2020).
Addressing these challenges has been a primary focus of the healthcare quality improvement move-
ment (Weaver et al., 2017). For example, teamwork approaches such as TeamSTEPPS are aimed at
improving teamwork and interprofessional communication competencies (Cooke, 2016). Although
communication is often viewed as information exchange in medicine, communication scholars offer
a more nuanced understanding of interprofessional communication as complex and multifaceted.
Our goal in this chapter is to examine interprofessional communication in healthcare teams,
patient handoffs, and multiteam systems. We focus on these areas because they are interwoven within
communication systems in healthcare organizations. Healthcare professionals routinely operate
within and across interprofessional teams in a variety of challenging environments. Patient transi-
tions such as handoffs within and between teams are critical communication processes in patient care
systems. Significantly, interprofessional communication has been a focus in U.S. healthcare following
the groundbreaking report To Err Is Human (Kohn et al., 2000). This landmark study on medical
errors recommended improved communication and team-focused care in healthcare organizations.
Subsequent research has shown that effective interprofessional communication is linked to care

244 DOI: 10.4324/9781003043379-21

 Interprofessional Communication

quality (Rosen et al., 2018; Weaver et al., 2017). Therefore, our focus here is to better understand
interprofessional communication processes in teams, handoffs, and multiteam systems.

Healthcare Teams
In the first edition of this handbook, Poole and Real (2003) distinguished between group and team by
noting that groups refer to individuals assigned to a work unit or task, whereas teams are designed
“to achieve high levels of solidarity, purpose, and unity” (p. 370). The authors described a typology
of healthcare teams based on variations in team structure, interdependence, boundedness, centraliza-
tion, and diversity. Each team type engenders its own communication that may depend on its tasks,
complexity of patient care, standards of healthcare practice, and purpose of the broader system (e.g.,
department, organization, industry). Building on these ideas in the second edition of this handbook,
Real and Poole (2011) utilized systems theory to illustrate how communication inputs (formal
team meetings, hallway meetings, handoffs) shape communication processes (information exchange,
informal talk, backstage communication) and influence both outputs (quality of care, adverse events)
and patient outcomes (see Figure 7.1 in that chapter). This section builds on these ideas by utilizing
systems theory (Ilgen et al., 2005; Mathieu et al., 2018; Tschan et al., 2011) to examine a relatively
new area of inquiry: how healthcare physical layouts shape team communication. First, however, we
provide a brief review of team theory.

Team Theory
Small group research has a rich history of theory that continues to be relevant to this day (Mathieu
et al., 2018). Classic research by scholars such as Lewin (1947) examined social influence on indi-
vidual group members. Festinger et al. (1950) examined communication in relation to physical loca-
tions and productivity. Leavitt (1951) investigated communication patterns in groups and networks
shaped by physical structures. Over time, group research drew more concisely on systems theory to
understand group dynamics. McGrath (1964) developed an early version of input-process-output
(IPO) for understanding group processes and outcomes that has been used and refined by many
scholars. In healthcare, physician-scholar Donabedian (1966) developed the structure-process-out-
come theory to understand how healthcare outcomes are affected by inputs and processes. As such,
systems theory, particularly IPO, has been used by many to understand communication in groups
and healthcare teams (Ilgen et al., 2005; Mathieu et al., 2018; Real & Poole, 2011). This literature
is primarily characterized by social scientific perspectives, both quantitative and qualitative, and has
few critical-cultural studies. Thus, we focus our review primarily on studies within the social sci-
entific paradigm.
Healthcare teams do not operate in isolation but within broader systems, including departments,
patient care specialties (e.g., cardiovascular), hospitals, broader healthcare systems, and societies. Sys-
tems theories that have been used to study healthcare teams include structure-process-outcome
(Donabedian, 1966), multiteam systems (Mathieu et al., 2001), and human factors systems engineer-
ing initiative for patient safety (SEIPS; Carayon et al., 2006; Peavey & Cai, 2018). Each theory iden-
tifies the interdependent nature of healthcare work that influences communication and teamwork.
Considering teams as systems using the IPO model draws attention to team processes and the
relationship between inputs, processes, and team performance. Researchers have long noted that
small group/team research has less focus on and less evidence for group processes (e.g., communi-
cation) than other elements of teamwork (Poole & Real, 2003; Weaver et al., 2017). Because the
model is dynamic, understanding how structures contribute to team processes and how both influ-
ence outcomes can be a challenge. Tschan and colleagues (2011) suggest pulling away from static
models and examining IPO using longitudinal and dynamic approaches. Ilgen and colleagues (2005)

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recommend examining how certain outcome factors can influence inputs, thus creating new or
cyclical models. For example, a team may work together and find it is cohesive early in its lifespan.
This high level of cohesiveness (typically an output) can lead to trust (initially an input) and better
communication (process). Understanding the conditions under which certain processes emerge over
time can lead to new insights into healthcare teams. As such, we consider recent innovative research
using systems theory to examine how built environments in healthcare affect team communication.

Team Communication in Healthcare Built Environments

Although healthcare team research is voluminous and wide-ranging, the physical layout of healthcare
settings, with few notable exceptions, has largely been invisible in team communication research.
Recent communication research, however, highlights the role of physical layout for healthcare team
communication. Guinther and colleagues (2014) described how their in-depth post-occupancy
evaluation (POE) revealed the value of using multiple methods to better understand communica-
tion privacy and confidentiality in an urban hospital emergency department with an open central
core design. Also focused on emergency department layout, Real et al. (2014) reported how size
and distance prevented good face-to-face interprofessional communication. Looking more broadly,
Dean and colleagues (2016) illustrated how hospital layouts influence communication and reported
that discourse in the form of “case talk” and “comfort talk” were linked to physical space, profes-
sion, and gender. Barbour et al. (2016) also found evidence of gendered discourse stemming from
professional identities, communication styles, and designs that locate nurses in fixed stations while
providing physicians freedom of movement.
Examining nurse station design, Real and colleagues (2017) found that decentralized nurse sta-
tions (typically located outside patient rooms) led to decreased nurse-to-nurse communication and
greater nurse interdependence with other healthcare professions. Fay et al. (2017) reported that
staff perceived a strength of centralized nurse station units to be that these units led to significantly
greater teamwork, whereas a strength of decentralized units was that they enabled greater proximity
to patients. Harrison et al. (2018) noted that physical space played a role in how frontline employees
performed complex frontstage and backstage communication practices to accomplish their work in
a health clinic.
Real and colleagues (2018a) found that patients preferred newer decentralized units because of
larger single-occupancy rooms for privacy and comfort; nursing staff, however, were mixed in their
assessments: They rated their new decentralized units as having better patient rooms and better over-
all environment, yet they experienced lower levels of mentoring and team communication. Real
and colleagues (2018b) reported that nurses described team communication in centralized units with
themes of proximity, teamwork, and relationships, whereas nurses in decentralized units portrayed
communication in terms of distance, fragmentation, and information exchange. A systematic review
of decentralized nursing station research by Fay et al. (2019) reported that such configurations were
associated with less nursing teamwork but generally (not always) better patient experiences. Fay and
colleagues (2020) found that patient unit designs were associated with perceptions of efficiency and
interprofessional care processes.
Many of the aforementioned studies examined healthcare team communication and design
using a systems theory framework. A recent systematic review by Peavey and Cai (2018) utilizes
SEIPS theory (Carayon et al., 2006) to examine communication and teamwork in healthcare design
research. Their review illustrates how physical environments, as systems components, are connected
to healthcare team processes within a broader IPO framework. Peavey and Cai, both architecture
scholars, note how design factors, particularly proximity and visibility, are important to communica-
tion in healthcare teams.

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Multiple studies have found a relationship between proximity and teamwork in healthcare con-
texts. For example, several studies (e.g., González-Martínez et al., 2016) report that proximity gen-
erated openings for spur-of-the-moment interactions in informal meeting spaces such as corridors
and other work spaces. Jenkins et al. (2016) found proximity was related to increased interactions
between pharmacists and other members of teams (e.g., nurses, physicians). However, when teams
were further apart, they experienced increased isolation (Real et al., 2017) and lower team coordi-
nation (Nanda et al., 2015). Madsen and Burau (2021) found greater distance was a structural bar-
rier to informal relationships between healthcare team members. Research by Real and colleagues
(2017, 2018b) showed that when team members work closer together and can see one another, they
are more likely to experience a supportive teamwork environment. However, as team members are
spread further apart or have reduced visibility, they report feeling isolated or experiencing reduced
social support (Nanda et al., 2015). Gharaveis and colleagues (2020) found that improved visibility
can enhance teamwork in emergency departments. Temporary nurses working out of sight of other
nurses were unlikely to ask for help even when faced with heavy workloads, demonstrating how
physical space in conjunction with hospital culture influences how nurses communicate (Batch &
Windsor, 2015).
Research has linked built environments in healthcare to what Salas et al. (2005) call the “Big 5”
teamwork components (team leadership, mutual performance monitoring, back-up behavior, adapt-
ability, and team orientation) with three supporting mechanisms (shared mental models, trust, and
closed-loop communication; Peavey & Cai, 2018; Real & Pilny, 2017; Real et al., 2020). For exam-
ple, proximity and visibility may affect all “Big 5” elements. Team leadership—the capacity for a
team to coordinate, evaluate, and establish a positive team climate (Salas et al., 2005)—is more likely
to occur when healthcare team members are closer and/or can see others. Mutual performance
monitoring, the ability to look after team performance, will be enhanced as members are proximal
and visible to each other. These same dynamics affect back-up behaviors and team orientation
(the extent that individuals perceive they are part of team) because team members working closely
together in the same space are more likely to support others and think of themselves as members
of the team. When team members can see each other, they are more likely to feel part of the team,
supported, and in touch with others on the team (Nanda et al., 2015; Real et al., 2017). For those
not co-located, team members have adapted to changes in proximity/visibility by using technology
to connect with other members (Real et al., 2014).
Further, and in direct response to the limited notion of “closed-loop communication,” Real et al.
(2020) provide examples of more complex and nuanced team communication based on more than
150 hours of observations across two hospitals. This communication ranged from greetings, team
introductions, and reviewing care plans with patients to rapport building, team member voice, dis-
tribution of speaking time, information sharing, listening, and more. Research in interdisciplinary
rounding (IDR) teams provides an avenue through which to illustrate the value of communication
in teamwork. These teams, typically composed of physicians, pharmacists, nurses, patient care/case
managers, and patients/families, are designed to improve communication with patients by regularly
visiting patients to check in and interact with them (see also Apker et al., 2018). Healthcare teams
observed in these studies creatively expanded the concept of team communication beyond closed-
loop communication in rounding teams. Real and colleagues also found that positive team com-
munication behaviors such as rapport building, soliciting questions, seeking input, and sitting at eye
level with patients were more likely to occur in settings with geographically cohorted teams.
This developing research illustrates how healthcare built environments are important system ele-
ments that shape interprofessional communication and teamwork. Exploring this topic is important
when considering how information flows in teams. A critical exchange of information in healthcare
involves patient handoffs, the topic of the following section.

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Patient Handoffs: Minimizing Errors in Care

Patient handoffs can involve a variety of health professionals in several settings over extended peri-
ods of time. These handoffs are the “exchange between health professionals of information about a
patient accompanying either a transfer of control over, or of responsibility for, the patient” (Cohen &
Hilligoss, 2010, p. 94). Handoffs offer an opportunity to create a shared understanding of a patient’s
needs (a shared mental model), as well as fostering collaboration and teamwork among interdiscipli-
nary team members (Jiang et al., 2017).
Patient handoffs often occur multiple times as patient transfers occur among healthcare providers
such as nurses, physicians, and allied health staff, as well as settings such as interdepartmental units
and healthcare facilities. At each transition, information critical to the patient’s care may be lost,
omitted, and/or incorrectly conveyed, possibly leading to adverse and sometimes life-threatening
errors in patient care.
An evaluation of 3,800 adverse patient care events by The Joint Commission (TJC), a national
healthcare accrediting agency, found that 65% were caused by problems in communication; at least
half of those problems occurred during patient handoffs (“Improving Handoff Communications,”
2005). The Joint Commission introduced a 2006 National Patient Safety Goal requiring healthcare
organizations to standardize handoff communication to improve patient safety (Joint Commission,
2005). Similarly, the Accreditation Council for Graduate Medical Education required that all physi-
cian graduate programs provide training for and monitor effectiveness of handoff processes as part of
patient care and safety (Starmer et al., 2014).
The Joint Commission guidelines were general, requiring each organization to determine
specific strategies to promote effective handoffs (“Improving Handoff Communications,” 2005).
Mnemonic organizational tools such as SBAR (Situation-Background-Assessment-Recommen-
dation; Haig et al., 2006) were suggested for collecting and organizing key patient information.
Handoff participants had to have an opportunity to ask and respond to questions, emphasiz-
ing the importance of a two-way exchange of information to reduce patient care errors (Perry,
2004). The Joint Commission also expected that patient information be verifiable and include
relevant historical data and that barriers to communication, such as interruptions, be reduced
to assure key patient information is not lost or forgotten (Arora & Johnson, 2006). The need to
better understand and improve the patient handoff has driven clinical and communication-based
research examining virtually every aspect of patient transitions, including processes, tools, content,
location, and communication behaviors. The following section offers a theoretical context for
viewing patient handoffs from the perspectives of communication competence and collaborative
communication.

Handoff Communication Theoretical Framework

Communication competence (Cooley & Roach, 1984) and the collaborative communication model
(Clark, 1996) are two theoretical frameworks for patient handoff research. Communication com-
petence has been defined as “the knowledge of appropriate communication patterns in a given
situation and the ability to use the knowledge” (Cooley & Roach, 1984, p. 25). Concepts include
communication patterns (e.g., language structure, discourse patterns, nonverbal behaviors), appro-
priateness (based on the rules of the culture), and strategic use of communication for specific situ-
ations. Spitzberg (1983) argued competence is an “interpersonal impression” (p. 326) gauged by
perceptions of self and other’s communicative appropriateness and effectiveness given the context of
the situation. Spitzberg (2000) noted, “communication that is both effective and appropriate is likely
to be higher quality than communication that is one but not the other” (p. 109, emphasis added).

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The Nursing Handoff Communication Competence Scale (Streeter et al., 2015) was devel-
oped to identify the behaviors that nurses indicate are reflective of competent communication dur-
ing change-of-shift handoffs. This scale was based on Cegala’s (1997) concept of communication
competence in the medical context using information exchange (information giving, seeking, and
verifying) and socioemotional (fostering trust, warmth, and concern) communicative behaviors.
Understanding the information exchange process is important given TJC’s requirement that health-
care providers participate in this two-way flow of patient information. Use of these behaviors by
nurses at change of shift was perceived as being associated with the best quality (communicatively
competent) handoffs (Streeter et al., 2015).
The collaborative communication model (Tomasello, 2008) provides a framework for research
into common ground handoff communication among medical and nursing staff involved in the
interunit transfer of patients from high to low acuity settings (Toccafondi et al., 2012). Discontinuity
of interprofessional information flow, particularly among physicians and nurses, may put patients at
risk. Toccafondi and colleagues (2012) found that common understanding, knowledge, and assump-
tions about a patient’s status were lacking in some areas, due in part to the lack of inclusion of
nursing staff in pre-handoff conversations. The high-acuity and low-acuity units shared key patient
information regarding diagnosis and resulting assumptions. However, because nursing staff was not
part of the pre-handoff conversations, pertinent information often was omitted from patient records
and transfer/discharge forms upon which nurses relied. Toccafondi et al. suggest that developing
common communication ground requires participation by all members of the healthcare team in
different care units, with attention paid to using technology to capture verbally shared information.

Characteristics of Handoff Research

Much handoff research has been focused on nurses as they provide an estimated 80% of a patient’s
care (Keenan et al., 2008). They participate in various types of patient handoffs, including patient
transitions from one facility to another (e.g., nursing home to hospital) and interdepartmental trans-
fers (e.g., post-operative surgery to critical care), both examples of multiteam systems handoffs,
reviewed later in the chapter. However, the most common form of handoff occurs at the nursing
change of shift (Blouin, 2011). End-of-shift handoff methods include face-to-face (at various loca-
tions, including at a patient’s bedside or at a nurses’ station), recorded, and written (Pillow, 2007),
with an increasing use of electronic patient records and other technology-based tools. A review of
literature found that little research had been done to identify best practices “despite the well-known
negative consequences of inadequate nursing handoffs” (Riesenberg et al., 2009, p. 24).
Handoff communication failures are the result of many factors. Indeed, 10 hospitals working
with the Joint Commission Center for Transforming Healthcare identified several root causes for
such failures (Blouin, 2011). These causes included an unsupportive organizational culture (e.g.,
lack of teamwork, respect), differing expectations, mistiming of the handoff with patient transfer,
lack of time, interruptions, lack of standardized processes, inaccurate or incomplete information,
senders being unavailable for follow-up questions, and receivers being unable to focus due to con-
flicting priorities. Confusing language or jargon, lost or forgotten information (“Improving Handoff
Communication,” 2005), and providing too little, too much, inaccurate, or inconsistent information
(Welsh et al., 2010) also contribute to handoff failure. Other causes include use of unidirectional
information transfer instead of two-way exchange of information (Perry, 2004) and use of lengthy
handoff report processes and forms (Riesenberg et al., 2009). To reduce these causes of error, it is
important to focus on the communication processes involved, particularly information exchange
and socioemotional communication, and to consider the tools used during the handoff process. We
turn to these topics next.

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Information Exchange
A quantitative study by Streeter et al. (2015) found that nurses perceived that the best patient hand-
offs were those including what could be characterized as competent information exchange. This
involved information giving in response to direct questions or offered without prompting, information
seeking through direct questions and indirect probes, and information verifying through clarifying,
repeating, summarizing, and forecasting information. The importance of these behaviors differed by
role (i.e., sender/outgoing nurse, receiver/incoming nurse). For example, information giving was
not just the responsibility of the outgoing nurse, who is transferring responsibility for the patient;
incoming nurses also gave information in high-quality handoffs. Incoming nurses are primarily
responsible for seeking information by asking questions and verifying that the information provided
was correct, complete, and understood appropriately. Abraham et al. (2016) similarly found that
interactive communication and questions aided in preventing information miscommunication, with
the burden of fostering collaboration falling primarily on the incoming nurse, who must make sense
of the information provided by the outgoing nurse.

Socioemotional Communication
Although the primary purpose of the handoff is informational, it also offers chances to socialize,
discuss organizational concerns, and learn (Kerr, 2002), express feelings with colleagues about dying
patients (Hopkinson, 2002), and share a value system to enhance a team’s social cohesion and profes-
sionalism (Lally, 1999). The best nursing handoffs include socioemotional behaviors such as being
warm and friendly, using language that is easily understood, contributing to a trusting relationship,
helping the other nurse feel comfortable and relaxed, showing compassion, and being open and
honest (Streeter et al., 2015).

Tools to Facilitate Handoff Communication

There is little agreement about whether any one format of an organized handoff tool, such as SBAR,
is better than another in facilitating effective handoffs (Staggers & Blaz, 2013). In their review of the
literature, Galatzan and Carrington (2018) found that studies largely emphasized format and struc-
ture rather than patient information content, and they found no direct evidence that use of standard-
ized handoff tools improved patient outcomes. However, standardizing handoff structure increased
nursing satisfaction. Using SBAR in handoffs to foster collaborative communication among nurses,
physicians, staff, and patients did result in significant improvements in communication, teamwork,
and a climate of safety (Beckett & Kipnis, 2009).
A handoff improvement initiative involving pediatric residents in nine hospitals (Starmer
et al., 2014) used the mnemonic-based structure called I-PASS (illness severity, patient summary,
action list, situation awareness and contingency planning, and synthesis by receiver). I-PASS
was used for both oral and written (built into the electronic medical record program or word
processing program) handoffs. Bundling I-PASS with training and process changes resulted in
a significant reduction in medical errors (23%) and preventable adverse events (30%) in 10,740
patient admissions, with no negative impact on workflow (i.e., no added time to complete the
handoff). There was also an improvement in medical residents’ oral and written communica-
tions, as well as an increase in residents’ satisfaction with the quality of their handoffs. Handoff
training using I-PASS on a pediatric clinical teaching unit also resulted in improved collabora-
tion and organization among handoff participants, as well as correct identification of critical
care patients requiring enhanced monitoring (Huth et al., 2016). More than 50 hospitals have
adopted the I-PASS program, with preliminary analyses showing improvements in verbal and

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written handoff quality, as well as a decrease in staff-reported adverse events related to handoffs
(Starmer et al., 2017).
Limited research on integrating handoff tools into electronic health records (Galatzan & Car-
rington, 2018) indicates that nurses prefer to use paper-based tools, with more experienced nurses
relying on their memory and paper charts to recall patient information. Jiang et al. (2017) found
that using electronic handoff tools developed for interdisciplinary teams on a pediatric intensive care
unit did not improve shared information overlap; indeed, although the difference was not statisti-
cally significant, the average number of information discrepancies (e.g., dosage, treatment, patient
symptoms) nearly doubled post-implementation. As such, more work needs to be accomplished in
developing high-quality tools for handoff communication.
This section has illustrated the importance of communication competence for patient handoffs. It
shows how effective handoff tools and processes lead to enhanced handoff communication. Another
important element of interprofessional communication, multiteam systems, is explored in the next
section.

Multiteam Systems
Multiteam systems (MTS; Mathieu et al., 2001) operate in healthcare environments where teams
must work with other teams to accomplish broader patient care goals. These “teams of teams” play
a central, yet often unrecognized, role in patient care and are connected through a pattern of IPO
interdependencies. An oft-used example found in Mathieu et al. (2001) is useful for depicting the
complex functioning of multiteam systems. A car accident occurs, and an individual is injured.
A paramedic team arrives on scene to treat and then deliver the patient to a local emergency depart-
ment. The emergency department team receives and treats the patient. If the patient needs hospi-
talization, an additional handoff occurs between the emergency department team and hospital floor
team. In this example, at least three and possibly four teams were involved in patient care. A second
example by Chollette and colleagues (2020) illustrates how cancer MTS operate, with the patient
and patient advocate team at the center of a set of teams that includes primary care, oncology, and
palliative care teams.

MTS Theory and Types of Teams

Multiteam systems are tightly coupled networks of teams engaged in meeting at least one overarch-
ing goal along with individual team goals (Mathieu et al., 2001). Multiteam systems are complex
organizational structures that link teams to other teams according to context, task, and interdepend-
ence. Coordination of team goals with broader system goals is crucial to MTS theory (Ilgen et al.,
2005 Mathieu et al., 2018; Tschan et al., 2011). A fundamental communication issue in multiteam
system handoffs involves how each discipline may focus on or highlight information salient to them.
A given team may not always communicate information that the next team needs as it receives the
patient. This why understanding communication is critical during handoffs between teams in these
situations.
For that reason, it can be useful to consider MTS within an existing typology of teams, each
with distinct communication processes. Drawing upon Poole and Real’s (2003) typology, MTS can
be considered along a continuum of interdependence, boundedness, centralization, and diversity.
Each team type generates communication that can vary based on these factors and may represent
a distinct MTS. For example, an ad hoc team, one formed to address one or more specific issues
only, could be created to reduce back injuries among nursing staff. This team may operate within
a hospital where it interacts with other teams, such as safe patient handling teams, materials/
supply teams, and nursing care review teams. Communication among these teams would be

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organized around the task (reducing injuries). Other teams would benefit from this ad hoc safety
team because they would better understand systems factors (reduced proximity to others who
could help; lack of materials to lift patients; nursing culture that takes pride in hard, physical work)
related to injuries. If staff members are injured, they may be seen by a nominal care team, which
describes a group coordinated by a primary care physician, which may hand off the patient to a
unidisciplinary team, composed of a single discipline, of physical therapists or occupational thera-
pists. In line with MTS theory, the output of the nominal team would be the input for the unidis-
ciplinary team. Because the primary care physician would work collaboratively on diagnosis and
treatment planning with the consulting teams, this coordination would entail that communication
flow back to the referring physician.
Should the injured staff member need surgery, they would be referred to an interdisciplinary
team (members collaborating in the same setting). This operation would require coordination
among multiple teams—preoperative team to operating room team to post-op recovery team—in
sequential interdependence. Communication between these teams would typically flow from one
to the next. Post-surgery, the patient would move to a hospital unit to be cared for by multidisci-
plinary teams (members coordinate in conjunction yet not simultaneously) of nurses and physical
therapists, who coordinate their work to get patients ambulated (walking, moving) while still in
the hospital. Communication in this type of MTS involves reciprocal interdependence as teams
coordinate their actions, share information, and administer an evolving treatment plan. They share
input interdependencies such as supplies, resources, and physical space (Mathieu et al., 2001; Rosen
et al., 2018).
Transdisciplinary teams are characterized by different professions/occupations working together
with much higher levels of collaboration than typical healthcare teams. Galvin et al. (2014) describe
transdisciplinary care as involving teams with many different types of providers (physicians, nurses,
physician assistants, social workers, psychologists, therapists, health educators, other allied health
professionals; see Chapter 16, this volume) who collaborate to help patients and families. This type
of team has more flexible and fluid boundaries based on patient needs and clinician expertise. They
are characterized by high-quality communication and trust among team members. For all teams in
MTS, key challenges are effective coordination among teams and proper balance between individual
team goals and the goals of the entire system.

Healthcare Built Environments

The built environment can affect MTS interprofessional communication. For example, Ervin and
colleagues (2018) have noted how physical design can influence team-to-team communication and
care in intensive care units (ICUs). The “near-constant alarms, uneven lighting, poorly placed equip-
ment, and space limitations mean that the physical environment is, at best, not helpful and, at worst,
harmful to the goals of team-based critical care” (Ervin et al., 2018, p. 469). Ervin and colleagues
suggest changes to ICU designs that include “open floor plans, easy circulation around the patient’s
bed, clear lines of sight between nursing stations and rooms, and single-patient rooms” because
such changes “can improve communication and family satisfaction with care” (p. 469). Proximity
is important in MTS. For example, greater distance between teams can reduce MTS effectiveness
because of communication delays between teams and networks (Johnson, 2019). Pachilova et al.
(2017) examined hospital layouts and found that location of work spaces and distance between
them affected communication (frequency, duration, and hierarchical nature) among teams/networks
of physicians and nurses. Sailer and colleagues (2013) examined communication networks among
caregivers in two British hospitals and showed how proximity (close or far) influenced frequency of
communication.

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MTS and Networks

Multiteam systems can operate as part of larger networks. These networks of multiple teams often
operate according to homophily, one of the generative mechanisms for networks identified by
Monge and Contractor (2003). Homophily describes the tendency for people to seek out or be
affiliated with similar others. For example, Pinnelli (2015) found that primary care nurses tended
to connect with other nurses with similar training and specialization. Mascia and colleagues (2015)
reported homophily to be an explanatory factor in physician referral networks. Their research indi-
cates that referral patterns were influenced by whether physicians had similar professional interests
or practiced in the same institution. Although there are benefits to homophily, such as increased tie
formation and cooperation, a problem with it is that it can exacerbate interprofessional differences,
which can lead to greater division. These “fault lines” in interprofessional teams (Johnson, 2019;
Lau & Murnighan, 1998), where homophily-based communication boundaries increase within-
group communication and reduce across-group interactions, are often based on attributes such as
profession, department, or even day/night shift. Although many teams have fault lines based on
professions, these fault lines within and across teams are particularly hazardous when the resulting
conflict and inadequate levels of communication threaten to compromise patient care and safety.
Significantly, there are benefits to being connected in networks in healthcare. Morley and Cashell
(2017) studied a healthcare organization that promoted collaborative networks and found improved
sharing of evidence-based practices among professions, increased innovation, and improvement of
medical decision-making. The benefits were more apparent in interprofessional teams than in mul-
tifunctional teams where professions stayed in their “silos” and did not attempt to teach one another
about care practices. If the work was organized so that professionals worked together interdepend-
ently, rather than sequentially passing off patients, knowledge sharing and innovation improved.
Similarly, Samuelson et al. (2012) argue that it is important to distinguish between multiprofessional
collaboration and interprofessional collaboration. In multiprofessional collaboration, parties each
stay within their own profession and conduct the activities of their profession separately, whereas in
interprofessional collaboration, parties learn from and participate in activities of other professions.
Collaboration depends on the work being structured so that professionals are not occupied with
individual tasks and have opportunities to meet others and engage in regular joint activities. Samuel-
son and colleagues’ study site included structured venues for discussion and participation that enabled
professionals to forge collaborative relationships.
Networks are also important to interprofessional communication because of patterns of com-
municative activities that teams enact to obtain information needed to care for patients (Johnson,
2019). Pinelli and colleagues (2015) found that caregivers and patients were aware that resident physi-
cians were most important in discharge processes, followed by primary nurses and care coordinators.
Pinelli et al. reported that during discharge, communication was primarily synchronous and occurred
between intern physicians, primary nurses, and patients. Consequently, communication networks
enable and constrain information flow; help teams know where, how, and from whom to find infor-
mation; and facilitate the development of transactive memories within teams (Johnson, 2019).

Implications and Future Directions

In this chapter, we have examined interprofessional communication through the lens of healthcare
teams, patient handoffs, and multiteam systems. In examining healthcare teams, an emerging body
of communication research was highlighted to show how physical design shapes interprofessional
communication and teamwork processes in healthcare systems. Recent observational research was
presented to illustrate the multifaceted nature of team communication. An important implication

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stemming from this review is the inclusion of physical structures and designs in health commu-
nication research. Future research may examine, through observational and other methods, how
healthcare teams communicate in different physical layouts. Further, this research could examine
how physical designs influence risk perceptions, team psychological safety (Edmondson, 1999), and
team member voice.
Patient handoffs are critical to patient care quality and safety. Researchers from a wide range of
healthcare disciplines have focused attention on patient handoffs since TJC targeted improving hand-
offs as a way of reducing communication-related adverse events (Joint Commission, 2005). A sec-
ond implication of this chapter, then, involves how competent communicative behaviors lead to
improved information exchange and socioemotional communication at the patient handoff. Further,
it illustrates how use of effective handoff tools and processes lead to improved handoff communica-
tion. Future research is needed to determine whether such improvements enhance communication,
reduce medical errors, and increase patient safety (Galatzan & Carrington, 2018). Jiang et al. (2017)
argue for future research on whether health information technology can improve information trans-
fer consistency and shared mental models in handoffs among interdisciplinary teams. Such research
will provide a better understanding of differences in background and patient care approaches of
medical and nursing staff, as well as improved interprofessional communication.
Multiteam systems are an important element of interprofessional communication for both health-
care teams and patient handoffs. These teams of teams work together as they share a superordinate
goal: the care of patients. A third implication of this chapter reveals how Poole and Real’s (2003)
typology can be used to illustrate how teams routinely communicate and operate across teams to
care for patients. Networks were examined, and homophily was reviewed for its effect on interpro-
fessional communication and the creation of fault lines in interprofessional teams. Future research
could examine how healthcare built environments and networks are important to communication in
multiteam systems. For example, communication channels and locations could be investigated. Bar-
rett et al. (2020) found that asynchronous channels such as e-mail and voicemail worsened commu-
nication overload, whereas synchronous channels such as team huddles improved it. Future research
could examine how specific structures such as daily huddles, team debriefings, feedback between
team members, and their physical settings enhance team communication competence.

Conclusion
This review has presented multiple approaches to interprofessional communication. As health com-
munication scholars continue to broaden their disciplinary horizons, it is clear that approaches from
other fields such as architecture and design offer unique insights into communication in teams,
handoffs, and multiteam systems. Because built environments in healthcare are dynamic factors that
can facilitate or hinder effective team communication, patient handoffs, and communication across
multiple teams, they offer many opportunities for health communication scholars to investigate
interprofessional communication.

Note
1. The Institute of Medicine is now known as the National Academy of Medicine.

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 18
STRESS AND BURNOUT
A Review of Research in Health Organizations

Jennifer Ptacek and Julie Apker

Research conducted in the ten years since the last edition of this handbook shows that stress and
burnout are still important concerns for healthcare organization researchers and practitioners. Issues
of interpersonal role stress continue to be studied in new contexts, whereas increased use of health
information communication technologies (HICTs) and health system restructuring related to merg-
ers and acquisitions and the use of physical space have emerged as new sources of stress for healthcare
providers. Research has shown both an increase in rates of burnout and a decrease in work-life bal-
ance (WLB) satisfaction among healthcare providers in recent years. For example, Shanafelt et al.
(2015) found an increase in physician burnout for all specialty disciplines, many of which experi-
enced more than a 10% increase in just three years. They note, “the increase in burnout and decrease
in satisfaction with WLB in physicians over the last 3 years runs counter to trends in the general
US working population over the same interval” (Shanafelt et al., 2015, p. 1606). Clearly, healthcare
professionals continue to experience heightened levels of stress and burnout that are exacerbated by
emerging organizational stressors.
This chapter begins by examining recent literature regarding emerging job stressors, such as
HICT and health system restructuring, and enduring job stressors related to patient, team, and inter-
professional communication. We then discuss dimensions and outcomes of burnout within health-
care professions and functions and sources of supportive communication that may help mitigate job
stressors and burnout. Finally, we provide ideas for future research related to healthcare provider
stress, burnout, and supportive communication.

Emerging Job Stressors Within Healthcare Professions

Since the last edition of this handbook, two major categories of role stressors—HICT demands and
health system restructuring—have received growing research attention as contributors to healthcare
provider stress and burnout.

Health Information Communication Technology

Health information communication technologies refer to electronic health records (EHRs) and
patient portals. They are two sides of the same coin, functioning as separate but related technologies
focused on housing and sharing patient care information. Electronic health records work as the digi-
tal equivalent of the patient’s paper chart, archiving and conveying all data related to patient history

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and treatment from all clinicians involved in the patient’s care (healthIT.gov, 2019). Further, EHRs
consist of resources, tools, and workflow processes used by health professionals in care delivery. Only
authorized users can use EHRs, and information is designed to be instantly and securely available to
them. Patient portals refer to online, secure websites to which patients log in to view personal health
information, communicate directly with their clinicians, schedule appointments, request refills, etc.
(healthIT.gov, 2017). Although HICT brings benefits to healthcare delivery such as greater transpar-
ency and access among providers and between patients and provider, the research literature shows
that HICTs have exacerbated provider stress and burnout by dramatically heightening provider
communication load.

Communication Load Stressors

Communication load refers to the complexity of information processing (e.g., diagnosis, medi-
cal decision-making) and documenting (e.g., thoroughness, navigation, accuracy). For instance,
providers experience click burden and frustration with difficult-to-navigate user interfaces when
complying with highly structured documentation requirements and computerized physician order-
ing, activities that take more time than traditional paper charting and verbal orders do (Babbott
et al., 2014). Studies also report problems with information chaos, or more information than a
clinician can easily and quickly access and comprehend during a patient encounter (Arndt et al.,
2017; Gardner et al., 2019). Separate studies of physicians and nurses demonstrate the job dis-
satisfaction and stress specific to interacting with asynchronous alerts (inbox notifications) ranging
from test results to messages from other healthcare professionals (Apker et al., 2020; Gregory et al.,
2017; Lieu et al., 2019). Of these, Gregory et al. (2017) found that the average provider “receives
over 56 alerts and spends 49 minutes responding to asynchronous alerts per day” (p. 688) and such
load exacerbated physician physical fatigue and cognitive weariness. In Apker et al.’s (2020) qualita-
tive study of family medicine clinicians, a physician described “wanting to punch the [computer]
screen” after he emptied his inbox and it refreshed to show several new patient requests. These
forms of communication load can reduce clinicians’ autonomy or control over work, reduce their
job satisfaction, and increase job frustration, all known contributors to burnout (Murphy et al.,
2019; Tai-Seale et al., 2019).
Communication load also pertains to time pressures such as frequency, duration, and responsive-
ness of interacting with HICTs. As noted elsewhere in this chapter, EHR documenting obligations
and high patient volume require providers’ constant attention and management, which spills over into
non-work hours. This part of the load also pertains to the communication providers engage in with
patients over electronic portals. For some patients, greater, more convenient access to providers cre-
ates unrealistically high expectations for immediate communication 24 hours a day, seven days a week
(Apker et al., 2020). Patients wanting to avoid in-person visits may message symptoms and send images
to their healthcare provider along with frequent, urgent demands for online diagnosis and treatment
(Lieu et al., 2019). Although this form of load stress is more commonly found with patient-provider
communication, it is also reported in provider-provider communication studies. For example, nursing
research indicates that HICTs hinder effective interprofessional communication and collaboration in
ways that contribute to nurses feeling negative stress and lack of well-being (e.g., Boyle et al., 2019).

Communication Load Outcomes

Extant research shows that although their communication load has increased with HICT, clinicians
typically do not receive additional administrative time (Shanafelt et al., 2016). Thus, communication
load leads to blurred or lack of boundaries between work and life domains as clinicians work outside of
designated work hours. Studies from multiple medical specialties indicate that physicians interact with

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HICTs after hours, on weekends, and on days off to catch up on electronic communication demands
(e.g., Gardner et al., 2019; Tai-Seale et al., 2019). For example, a time and motion study found that
primary care physicians spent almost six hours—more than half of their workday—on EHR tasks dur-
ing and after hours in addition to patient encounters (Arndt et al., 2017). Although doing HICT tasks
from home enables providers to keep up with employer and patient expectations for communication,
doing so curtails their time for self-care and engaging with friends and family (Apker et al., 2020).
Constant workload that spills over into non-work life, combined with little or no time to ease job
stress, contributes to deleterious effects for healthcare providers, their employers, and their patients.
The most visible outcomes for clinicians include long-term strain and burnout, substance abuse, and
conditions that may pose physical and mental health problems (Harris et al., 2018). Such difficulties
impact health organizations in the form of provider absenteeism, turnover, and even shortage, which
are circumstances that have high human and financial costs (Shanafelt et al., 2016). Patient care may
also be affected as healthcare professional stress and burnout have been linked to medical errors,
treatment delays, and other safety threats (Murphy et al., 2019).

Intersections of Communication With Health System Restructuring

Since the last edition of this handbook, health system restructuring has become more common, and
with it has come new communication stressors among healthcare professionals. One way in which
health systems are being restructured is through organizational mergers and acquisitions, as health-
care organizations strive to improve services and their market position, among other reasons. Health
systems have undergone restructuring to their physical spaces as well. For example, some hospitals
have restructured their floors from having a centralized nurse station to having multiple, scattered
nurse stations. With these changes have come a number of communication challenges and stressors
for healthcare professionals, described next.

Communication Stressors Related to Mergers and Acquisitions

Mergers and acquisitions (M&As) within healthcare organizations are steadily increasing but carry
with them numerous stressors to healthcare professionals. A merger occurs when “two or more
previously independent organizations consolidate into a single legal entity,” whereas an acquisition
occurs when “an organization acquires ownership rights of a second organization,” but these terms
are often used interchangeably (Postma & Roos, 2016, p. 122). The United States has seen a spike
in M&A transactions among healthcare organizations, increasing from 74 in 2010 to 115 in 2017
(Kaufman, Hall & Associates, LLC, 2018). Postma and Roos (2016) note that mergers most com-
monly take place to improve healthcare provision, such as offering more healthcare services, and to
strengthen organizations’ market or bargaining position in a competitive market. Other less common
motives include efficiency and financial reasons.
There are, however, mixed outcomes from M&As. Although M&As may prove a wise move for
some hospitals for the reasons listed earlier, there is weak support to suggest that operating margins
decrease post-merger for many hospitals (Noles et al., 2015). Mergers and acquisition failures are
blamed on issues such as communication delays, lack of a clear vision, and “culture clash”—which
can result in miscommunication during the blending of two cultures—all of which can have negative
effects on clinician stress (e.g., Creasy & Kinard, 2013). For instance, M&As often result in some sort
of loss felt by workers, including loss of identity and culture, which are important components of
managing stressful and demanding healthcare occupations (Piper & Schneider, 2015). Additionally,
not only do healthcare professionals experience uncertainty due to their changing position after a
merger or acquisition, but they also often lose sources of social support due to job cuts or organiza-
tional changes (Creasy & Kinard, 2013).

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Communication Stressors Related to Physical Restructuring

Physical restructuring of healthcare spaces has also recently contributed to communication stress-
ors among healthcare professionals. Health communication scholars, among others, have turned
attention toward examining the relationship between physical space and communication in organ-
izations, specifically in healthcare (e.g., Dean et al., 2016; Real et al., 2017). Physical space refers
to “how the positioning and use of various rooms, offices, and hallways convey particular patterns
of movement and sensibilities that are themselves involved in facilitating the identities and goals of
professionals in the organization, and the organization itself,” and it can shape communication and
signal status and even “ownership” (Dean et al., 2016, p. 1508). For example, although physicians
tend to be freer to move about the hospital, nurses—although they are constantly moving—tend
to be restricted to one general area (Dean et al., 2016). This constraint can be particularly stressful
for nurses as they manage various types of communicative activities simultaneously across time
and space.
Physical restructuring in healthcare spaces tends to move from a centralized design in which
nurse stations used by healthcare professionals for charting, meetings, and interactions are placed
in a central location to more decentralized designs with smaller nurse stations placed throughout a
floor (Real et al., 2017). Centralized nurse stations allow nurses to communicate more with each
other and providers, provide each other more support, and achieve a greater sense of teamwork, but
with centralized stations, nurses tend to spend more time walking to patients and other areas around
the floor (Pati et al., 2015; Real et al., 2018). On the other hand, newly designed decentralized
nurse stations allow more time with patients and can improve patient safety, but they can decrease
nurse communication, learning, and teamwork, and they do not necessarily reduce the amount of
walking for nurses because nurses will still walk to other nurse stations and areas (Pati et al., 2015;
Real et al., 2017, 2018). Although some healthcare professionals believe that decentralized designs
improve patient care and communication, nurses find decentralized spaces to be problematic and to
negatively affect their work in many ways (Real et al., 2017).
Having access to social support, which tends to occur more in centralized hospital spaces, is
a major factor in reducing healthcare professionals’ stress levels (Real et al., 2018). As previously
mentioned, decentralized nurse stations reduced nurse communication and teamwork, which nega-
tively affects nursing communities of practice in their attempts to promote informal learning and
mentoring (Real et al., 2017). The importance of communication in learning and reducing stress
cannot be overstated, especially in stressful occupations such as healthcare. Zborowsky et al. (2010)
note, “fewer opportunities for staff consultation and social interaction in decentralized nursing units
may decrease social support and increase stress among nurses working in these units” (p. 38). Dean
et al. (2016) argue that any restructuring of physical space should consider “how the arrangement of
physical space reflects established, macro-discursive constructions of what it means to be a healthcare
professional” (p. 1506).

Enduring Job Stressors Within Healthcare Professions

In addition to managing work overload, time constraints, and competing needs and expectations
(Perez et al., 2015), healthcare providers experience a number of enduring interpersonal role stress-
ors. Interpersonal strain, defined as “the feeling of discomfort and disengagement in the relationships
with people at work resulting from exceeding social and emotional pressures,” has been identified as
an interpersonally focused component of burnout (Consiglio, 2014, p. 69). Interpersonal strain can
apply to a variety of workplace communication relationships in healthcare, such as patients, team
members, and other individuals outside of one’s immediate work team. A multitude of interpersonal
stressors apply within each of these groups, discussed next.

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Patient-Related Communication Stressors

The frequent interactions that healthcare providers have with patients and their families bring a
number of stressful experiences. In addition to the physical demands of caring for patients, manag-
ing interpersonal relationships with patients and their families can take an emotional toll. Nurses
and other health professionals must engage in relatively emotional communication with patients,
which requires an appropriate display of empathy and care. The appropriate level varies from patient
to patient. Emotional labor uses facial and bodily displays to appropriately manage feelings at work
(Hochschild, 1983). A nurse juggling multiple patients among other tasks is still expected to show
compassion and friendliness even though the nurse may feel frustrated, exhausted, and underappre-
ciated. Surface acting occurs in instances where nurses put a smile on their face and show concern
even if they do not feel it in that moment (Goussinsky & Liyne, 2016). The emotional dissonance
of managing the difference between authentic emotions and appropriately displayed emotions is one
of the most stressful parts of a service professional’s job (Consiglio, 2014). However, if nurses try to
actually feel the emotions and adjust their feelings to match their expressions, they are engaging in
deep acting. Deep acting can also be emotionally exhausting and stressful, however, and difficult if
someone is already experiencing burnout symptoms such as cynicism and exhaustion.
Emotional labor proves especially challenging when dealing with exceedingly difficult patients,
and healthcare professionals experience a higher risk of aggression from patients than do those in
other occupations (Lanctôt & Guay, 2014). Campana and Hammoud (2015) found that nurses
experience some form of incivility daily on the job, which has an impact on their well-being. Fur-
thermore, Estryn-Behar et al. (2008) found that 22% of nurses experienced frequent violence from
patients or their families, and Eker et al. (2012) found that 66.8% of all healthcare providers in their
study had been exposed to violence and aggression within the last year. Health professionals who
experience mistreatment from patients are more likely to engage in emotional labor, particularly
surface acting (Grandey et al., 2012). Pairing levels of stress from emotional labor with instances in
which administration fails to support or understand them creates situations in which nurses may be
more likely to experience burnout (Campana & Hammoud, 2015).
Additionally, healthcare providers experience stress when managing patients with drug-seeking
behaviors and unmet expectations. In a study of palliative care clinicians, Perez et al. (2015) found
that most clinicians encountered issues managing patient and family expectations when patients
are experiencing intractable pain or addiction. Such situations cause stress for both providers and
patients and could leave providers with disappointment and sadness if they are unable to provide
effective treatment. Jamison et al. (2014) also indicate increased alarm regarding medication abuse
and compliance issues with patients using opioids to manage pain. Their study of primary care
providers found that 89% of the providers were concerned about medication misuse, 84% felt stress
related to managing patients with chronic pain, and 82% were worried about addiction in their
patients. Healthcare professionals also experience stress related to medication reconciliation (i.e.,
making sure a patient’s current medications match their medication orders), even with patients not
displaying addictive behaviors. Nazi (2013) interviewed healthcare providers, nurses, and pharma-
cists and found that communication is consistently at the heart of medication reconciliation, as
patients’ medication lists are often inaccurate or not up to date.

Team-Related and Interprofessional Communication Stressors

Although patient-related stressors pervade healthcare professions, providers also encounter stressors
when interacting with coworkers and others within the organization. For example, healthcare work-
ers often deal with incivility and bullying from their coworkers. Although most uncivil behavior is
low intensity, it can be frequent and have harmful outcomes such as job and psychological distress,

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anxiety, cognitive distraction, and turnover (D’Ambra & Andrews, 2014; Lanctôt & Guay, 2014).
Spiri et al. (2016) found that 88% of nurses in their study experienced incivility from coworkers in
the last year, with common uncivil behaviors including use of condescending language, showing
impatience with questions, and demonstrating reluctance or refusal to answer questions or return
calls/pages. Other nurses have been found to be the most common source of the uncivil behaviors,
but practitioners (including physicians) and nursing administrators are among the offenders as well
(Hamblin et al., 2016; Spiri et al., 2016). Incivility among healthcare professionals can occur from
power imbalances and may be generational, with more senior members bullying newer healthcare
team members, although the research literature also recognizes the prevalence of horizontal violence
(Hamblin et al., 2016).
Lastly, healthcare workers encounter team-related stressors in the form of lack of institutional
and coworker support. Eker et al. (2012) found that 90.2% of healthcare workers who experienced
workplace violence were not protected by current applicable laws and 88.3% of healthcare work-
ers were not supported by their organization after experiencing violence. Healthcare workers also
encounter conflicting expectations and lack of support from coworkers. For example, Perez et al.
(2015) interviewed palliative care clinicians and found that they felt overwhelmed by colleagues
who questioned their decisions and held unrealistic job expectations. This perceived lack of support
from colleagues can exacerbate healthcare professionals’ job stressors, which can lead to feelings of
burnout.
Finally, healthcare professionals endure communication-related stressors outside of their immedi-
ate work team. For example, physicians and other healthcare professionals spend hours each week
communicating with health insurance companies, working not only to get procedures approved but
also to comply with a number of required quality programs (Reith, 2018). This time spent com-
municating with insurance companies not only may be stressful but also takes away from time with
patients (Shanafelt et al., 2015). Additionally, miscommunication issues between healthcare providers
in different departments or healthcare facilities are common during a patient handoff (i.e., transfer-
ring a patient from one provider to another) and can add to stressful workplaces. Apker et al. (2016)
explored the competing discourses of emergency and hospitalist physicians and residents. They
found the existence of role dialectics such as autonomy-collaboration, which highlights the contra-
diction between needing to perform and think independently while also collaborating collegially,
and uncertainty-certainty, which balances uncertainty related to lack of sufficient information with
the need to display certainty when making medical decisions. This dynamic can heighten job stress
for both parties in the handoff. Next, we discuss various aspects of burnout.

Burnout
Definitions of burnout focus on negative experiences of physical, emotional, and mental strain from
chronic, long-term stress. Burnout affects approximately half of all nurses, physicians, and other
clinicians (Shanafelt et al., 2015), with prominent reasons including intense, constant, and growing
workload (including communication load), excessive work hours, and lack of work-life balance. In
this section, we consider the multiple dimensions of burnout and how burnout harms healthcare
providers, their patients, and health employers.

Dimensions of Burnout
Research by social psychologist Christina Maslach and colleagues (e.g., Leiter & Maslach, 2003;
Maslach & Jackson, 1981; Maslach et al., 2016) has greatly influenced understandings of burn-
out across academic disciplines, including health communication. The Maslach Burnout Inventory

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(MBI), consisting of reduced personal accomplishment, depersonalization of others, and emotional

exhaustion dimensions, is the most widely used measure of burnout (Loera et al., 2014).

Emotional Exhaustion
Emotional exhaustion consists of feeling severely emotionally fatigued due to various forms of
chronic, intense stress. This burnout dimension may occur as healthcare providers constantly take
care of the emotional, physical, and mental needs of patients and their families while simultaneously
caring for others such as coworkers, friends, and their own family members. Communication fac-
tors such as lack of information sharing among healthcare team members, conversations with highly
emotional patients, and discussions about sensitive topics have been found to deplete care providers
emotionally (Apker et al., 2020; Clayton et al., 2019). Research also shows that female health profes-
sionals experience greater emotional exhaustion than their male counterparts do, but more research
is needed to understand why (Chung et al., 2020; Oreskovich et al., 2015; Shanafelt et al., 2017).

Depersonalization
This dimension refers to providers distancing or detaching themselves when interacting with those
in the workplace. Depersonalization may be displayed when healthcare providers communicate cyn-
icism and/or indifference toward those with whom they interact, including patients, families, and
team members. For example, in research on critical care physicians and nurses, Galleta et al. (2016)
found that distance or depersonalization from work decreases team collaboration and reduces team
member information sharing, thus affecting team effectiveness.

Reduced Personal Accomplishment

The third burnout dimension includes perceptions of lack of professional efficiency and/or effective-
ness and perceived reduced work productivity. Reduced personal accomplishment can occur when
healthcare providers experience lack of control over their work, lower job autonomy, and less ability
to positively affect patient care (Kutluturkan et al., 2016; Oreskovich et al., 2015). Such feelings,
especially combined with a high number of patients and increasing organizational rules and regula-
tions, may result in providers questioning their professional value and personal self-worth (Apker
et al., 2020)

Outcomes of Burnout
Extant scholarship across disciplines shows wide-ranging, adverse effects of burnout on healthcare
providers, their patients, and their institutional employers. This body of literature demonstrates that
burnout causes short-term and long-term harm.

Outcomes of Burnout in Providers

Burnout negatively influences healthcare providers’ well-being in multiple ways, including their
physical, mental, emotional, and professional health. Regarding physical health, burned out clini-
cians experience headaches, insomnia, tension, fatigue, impaired memory, and decreased attention
(Melnyk, 2020). Research by Portero de la Cruz et al. (2020) revealed that the burnout among
emergency department nurses contributed to somatic symptoms (the physical manifestations of
stress) such as digestive problems, pain, dizziness, and fainting.

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The problematic effects of burnout extend to clinicians’ mental, emotional, and relational health.
For instance, Oreskovich et al. (2015) found that physician burnout was associated with depression,
suicidal ideation, and alcohol abuse or dependence, with female physicians suffering a greater toll
than male physicians. Multiple medical studies by Shanafelt and colleagues (e.g., Shanafelt et al., 2012,
2015, 2016, 2019) indicate that burnout leads to depression and suicide intention, with females and
primary care physicians more likely to experience both. Unfortunately, burnout among healthcare
providers also contributes to problems in their domestic or family relationships. For example, in a
national survey of physician partner/spouses, Shanafelt et al. (2013) discovered that physician fatigue,
work distractions, and lack of interest in family life due to workplace stress contributes to lack of
relationship satisfaction in medical marriages.
Finally, burnout deleteriously influences healthcare providers’ professional health. Scholarship
across health professions and career stages demonstrates that burnout lowers provider satisfaction,
morale, resilience, and optimism in their jobs (e.g., Kutluturkan et al., 2016; Robbins et al., 2019).
Such outcomes reduce healthcare provider quality of work-life, as well as exacerbating suboptimal
patient care and patient-reported patient-provider communication experiences (Chung et al., 2020).

Outcomes of Provider Burnout on Patients

Burnout’s negative effects extend beyond provider well-being to adverse impacts on the patient
experience. Tawfik et al.’s (2019) meta-analysis of 145 healthcare studies shows a robust relationship
between provider burnout and patient care quality, with a general trend of high burnout associated
with low care quality. Healthcare provider burnout has been linked to making medical errors and
prescribing inappropriate medications (Bodenheimer & Sinsky, 2014; Chung et al., 2020). Because
burnout influences the quality of provider communication with patients, it also has been linked to
lower patient adherence (Bodenheimer & Sinsky, 2014).
Provider burnout’s influence on patient-provider interactions is another notable area of study.
Research literature across health professions reveals that clinicians experiencing burnout have dif-
ficulty in demonstrating relationship-building skills (e.g., listening, rapport), discussing challenging
health topics, and displaying empathy (Clayton et al., 2019; Robbins et al., 2019; Wright et al.,
2010). Such behaviors produce undesirable clinical encounters and patient dissatisfaction, known
contributors to patient noncompliance and associated negative health outcomes (e.g., Halbesleben &
Rathert, 2008; see also Chapter 15, this volume).

Outcomes of Provider Burnout on Healthcare Organizations

Provider burnout also poses substantive problems for the health organization employers. The costs
of provider turnover are perhaps the most visible impact shown in the research literature. For exam-
ple, replacement of a licensed registered nurse may cost an employer as much as three times the
nurse’s annual salary (Unruh & Zhang, 2014), whereas replacing a physician requires approximately
$500,000 (Shanafelt et al., 2017). Added to the known financial expenditures of recruiting and
training new hires is the hidden cost of losing qualified, experienced employees who know their
jobs and organizational cultures (Dyrbye et al., 2017). The negative effects of turnover are especially
pronounced in primary care professions known for provider shortage because these effects can lead
to even further shortage (Bodenheimer & Sinsky, 2014). Provider shortage causes threats to patient
safety, such as treatment delays (Green et al., 2013; Loerbroks et al., 2017).
Burned out clinicians who remain in their jobs and with their employers can diminish quality
of work-life conditions for themselves and others. For example, research by Galletta et al. (2016)
reported that nurses suffering from emotional exhaustion and depersonalization are less apt to col-
laborate and share information; such behaviors reduce team communication effectiveness. In two

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other studies of nurse-team communication, Havens et al. (2018) and Nicotera and Mahon (2013)
found that burned out nurses are more likely to blame others, show disrespect, and engage in con-
flict. Finally, findings from Moreland and Apker (2016) indicate that lack of participation in problem
solving and unsupportive messages from other nurses exacerbate the conflict and stress that contrib-
ute to nurse burnout. Results also show that respectful communication facilitates conflict manage-
ment and reduces nurse stress, whereas disrespectful discourse heightens dysfunctional conflict and
increases nurses’ stress.

Supportive Communication Within the Health Professions

Communication and health literature consistently recognizes supportive communication as an
important buffer against stress. Chapter 10 in this handbook provides further information about
social support, so the current chapter focuses specifically on functions and sources of support among
healthcare providers at work. Because healthcare providers experience higher levels of stress and
burnout than do people in other occupations (Dyrbye et al., 2017), supportive communication is
especially necessary to mitigate negative effects. In fact, to address high stress experienced by health-
care providers, Bodenheimer and Sinsky (2014) propose updating the Triple Aim approach—which
seeks to optimize health system performance through improving the health of populations, enhanc-
ing patient experiences, and reducing healthcare costs—to the Quadruple Aim to include the work-
life of healthcare workers. They argue that this in turn will help achieve the other three aims. Next,
we discuss some functions of supportive communication.

Functions of Supportive Communication

Supportive communication serves a number of functions in healthcare work. For example, health-
care professionals face uncertainty related to organizational restructuring, implementation of new
systems, communicating information to coworkers and patients, and numerous other components
of their job (e.g., Apker et al., 2016; Creasy & Kinard, 2013). However, research finds that social
support can reduce uncertainty in healthcare workers and mitigate perceptions of stress (e.g.,
Wright et al., 2010). As noted previously, EHR systems serve as a source of stress for healthcare
providers. Barrett and Stephens (2017) found that coworker support helped employees accept the
new EHR system, which made it easier to implement the EHRs. Research also indicates that
supportive communication can reduce stress and ameliorate healthcare provider issues such as
those related to incivility and bullying (Campana & Hammoud, 2015; Eker et al., 2012), emo-
tional labor (Grandey et al., 2012), and new graduate retention (D’Ambra & Andrews, 2014).
Furthermore, social support can help build resilience as a strategy to reduce symptoms of burnout
(Kumar, 2016).

Sources of Supportive Communication

In addition to coming from friends, family members, spouses, and others outside of the workplace,
supportive communication comes from a number of sources within healthcare organizations, such
as managers, coworkers, and work friends. Other healthcare professionals are a helpful source of
support because they understand the unique stressors and organizational environment (Perez et al.,
2015). Healthcare professionals commonly provide each other with emotional social support by
listening to coworkers vent, showing empathy, and/or building esteem; informational social support
by sharing information or advice; and instrumental social support by offering physical assistance
(du Pré, 2010; Taylor, 2011). In addition, a less-discussed component of emotional support is com-
municating shared values with colleagues and one’s organization, as alignment of values has led to

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physicians feeling less burned out at work (Babbott et al., 2014). Health organizations also offer
sources of support through a variety of stress education and well-being programs (Perez et al., 2015).
Although healthcare professionals do take advantage of organization-offered programs to cope with
stress, they most frequently seek support from colleagues (Hu et al., 2015).
Other considerations of supportive communication include affiliation support, support in online
spaces, resilience, and support during health crises. First, similar to sharing values with others at
work, affiliation support can help healthcare professionals identify more strongly and feel more
connected with their organization and coworkers, which can reduce symptoms of burnout (e.g.,
Vieira et al., 2013). Second, healthcare workers are turning to online spaces for support by com-
municating with other healthcare professionals in discussion forums or blogs to share experiences
and information and ask for advice, which can build relationships and emotional/esteem support, as
well as helping ameliorate stress (e.g., Robinson et al., 2016; Valaitis et al., 2011). Third, healthcare
professions report the need for support in building resilience to cope with job stressors (Perez et al.,
2015). Organizational programs that promote resiliency skills can be helpful for managing patients,
workload, and other exposures to stress. Lastly, as crises such as the COVID-19 pandemic put front-
line healthcare workers at considerable risk and stress, support can be offered through building a
resilient organization, redistributing workload, and giving attention to emotional and mental well-
being (American Medical Association, 2020).

Ideas for Future Research

Much has changed in the healthcare system since the previous edition of this chapter, includ-
ing patient-provider dynamics, health organization and provider role restructuring, and ongoing,
widespread technological advancements. These changes and others continue to influence health-
care provider communication with patients and their families, healthcare team members, and other
organizational members in ways that exacerbate provider role stress and burnout. We offer ideas for
future communication research in three major areas based on this current review.
First, we notice a visible need for more communication-based research on stress, burnout, and
social support in the health professions. We found that the majority of studies regarding these top-
ics were authored by scholars outside of communication. Harrington et al. (2020) encountered
a similar situation in their systematic review of cost-of-care conversations, finding that out of
220 authors represented across the studies included in the review, only four of them had doctoral
degrees in communication. Although research conducted by non-communication scholars merits
attention, it is noticeably absent of communication theorizing necessary for a complete under-
standing of how and why providers experience stress and burnout and the associated outcomes
to themselves, patients, and organizational employers. The research also represents a primarily
post-positivistic paradigmatic perspective. Health communication scholars, both individually and
on multidisciplinary research teams, have the requisite theoretical and applied expertise needed
to fully capture communication in health contexts. Communication scholars also do work based
on more diverse paradigms, bringing interpretive and critical-cultural, as well as post-positivistic,
perspectives to their research. For example, our collaborations with clinician researchers have use-
fully integrated communication-based theories such as relational dialectics and sensemaking and
have used established communication research techniques (e.g., qualitative interviewing, discourse
analysis; e.g., Apker et al., 2014, 2016). Such scholarly contributions expand investigative possibili-
ties, as well as provide data-driven tools for action (Gibson et al., 2010; Welch et al., 2013). We
argue that many other communication theories can similarly add value to future research about
stress, burnout, and supportive communication in the health professions. For instance, theories
of identification and socialization could be used to explore how messages conveying professional

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value, organizational affiliation, and coworker/leader support could buffer providers from stress and
promote their well-being.
A second and more specific area of research attention pertains to the communication stressors
and associated burnout occurring because of rapidly increasing HICTs. Healthcare providers have
experienced skyrocketing communication load due to advancements such as EHRs and patient
portals. The research literature summarized in this chapter shows that the amount, frequency,
complexity, and duration of HICT demands heighten healthcare providers’ role stress. These pres-
sures spill over to working after hours and reduce provider work-life balance, a known mitigator of
burnout. Health communication scholars are well positioned to study this growing problem. For
example, communication-centered concepts from media richness, problematic integration, and
role theories might usefully explain the breadth and depth of HICT-related stress and burnout, as
well as offering solutions such as technology-driven supportive communication (e.g., social media
networks).
Our third and final idea for future research concerns the lack of stress, burnout, and supportive
communication research specifically studying the experiences of females and underrepresented
groups in the health professions. Several medical studies reviewed for this chapter show gender as
a significant variable in physician experiences of stress and burnout (e.g., Oreskovich et al., 2015;
Portero de la Cruz et al., 2020). Although we do know that female physicians across specialties
report higher levels of stress, burnout, and turnover intent than their male peers do, the gender
communication dynamics behind such trends remain underexplored. There are several questions
we might ask: Do patients and their families talk differently to female versus male care provid-
ers in ways that heighten role stress for females? How do competing work-life responsibilities
contribute to female healthcare provider role conflict? What targeted interventions can health
organization employers provide to improve the quality of work conditions for female healthcare
providers, especially in high turnover health professions in which they dominate (e.g., primary
care, nursing)? We also found a paucity of stress and burnout research regarding healthcare pro-
fessionals from underrepresented groups. Thus, we urge health communication researchers to
explore underrepresented populations as a way to attract and retain qualified healthcare person-
nel. We wonder how racial, cultural, and ethnic factors play a role in healthcare providers’ com-
municative role stressors and corresponding burnout. Further, how can healthcare teams, leaders,
and organizations supply healthcare providers from underrepresented groups with socially sup-
portive communication to mitigate the negative effects of stress and burnout? Research in these
areas must move forward to help address current racial, ethnic, and cultural disparities in the
health professions.

Conclusion
This chapter covers the last decade of research on stress and burnout among healthcare providers.
Although some stressors continue to pervade the healthcare organizational environment, new issues
such as HICT and organizational restructuring have added unique stressors as well. Supportive com-
munication continues to offer ways to help mitigate these stressors to varying degrees of success and use.
With recent changes to stressors in healthcare occupations come new opportunities for scholar-
ship. More communication-based research of stress, burnout, and social support in health professions
is needed to further understand how providers experience and manage stress. As HICTs become
increasingly more prevalent in healthcare work, so does the need for research on their effects and
effectiveness. Additionally, there continues to be a lack in research on experiences of females and
people of color in the health professions. These opportunities and others offer exciting promises to
the future of healthcare research.

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 SECTION V

Mediated Communication
 19
HEALTH AND MEDIA
The Impact of News and Entertainment

Katherine A. Foss

In January 2018, NBC premiered the episode “That’ll Be the Day” of the fictional drama This Is Us,
a highly popular television drama. The episode concluded with a faulty slow cooker erupting into
flames. Previous episodes had built up the house fire as the cause of death for the family patriarch
Jack Pearson, magnifying the significance of this narrative moment. Nearly nine million viewers
watched the episode, many of whom channeled their grief on social media, blaming the lead slow
cooker brand, Crock-Pot, for Jack’s death, even though a brand was never shown (This Is Us, 2019).
The stock price of Crock-Pot’s manufacturer declined 24% within two days of the episode airing
(Ciolli, 2018).
Such direct correlations between media content and behavior are rarely observed, as they are
typically mitigated through a complex array of variables. That said, media messages do influence
what we know, think about, perceive, like, dislike, and do—effects that become particularly impor-
tant with health issues. Media messages also capture and preserve a moment in time. What most
Americans knew about social distancing in January 2020, for example, vastly differed from their
knowledge in June 2020. Examining media content created at different time periods, even within
the same year, provides a glimpse into the dominant and competing discourses about a set of topics.
This look can also tell us what was not at the forefront of the public agenda.
Media effects can occur immediately after consumption, for example, by expanding knowledge
on a particular topic. They can also emerge later. A prosocial storyline on sexual responsibility might
prompt a viewer to think about using protection weeks after seeing the message. People’s attitudes
and behaviors can also be shaped by media content over time and from unintentional depictions.
This chapter delves into both the health content in various media platforms and their impact on
consumers’ knowledge, attitudes, and behaviors. Moreover, relevant theories that underscore these
effects will be addressed. For this chapter, “media” refers to both the industries that mass produce
consumer content and the news and entertainment content that is produced and consumed across
various platforms.

Literature Review
We know that media messages matter. The content in books, magazines, newspapers, movies, TV,
music, and websites influences its consumers. At the same time, consumers also have their own
beliefs and perceptions, which shape their interpretations of the messages themselves. But how do
these processes occur? What can shape and predict who will be exposed to a particular message,

DOI: 10.4324/9781003043379-24 277

 Katherine A. Foss

what they take away from it, and the extent to which it influences their short and long-term actions?
These factors are heightened when discussing media effects on health. Awareness, knowledge, and
perceptions of diseases, dangerous behaviors or medication, preventative care, and many other fac-
tors can significantly influence the state and well-being of both individuals and whole communities.
Looking at specific topics within health and media can help make sense of the relationship between
messages and knowledge, attitudes, perceptions, and behavior.

Depictions of Violence
Questions about the prevalence of violent images and their impact have emerged with each new
media technology. In the 1940s and 50s, people crusaded against comic books, listing crime and
violence among the amoral content. Similar concerns have been raised with the content in visual
media, questioning violence and other risky behavior modeled in movies, television, and interactive
video games. Social media and the use of portable technology have brought new concerns, including
cyberbullying and the solicitation of underaged youth.
Such fears are not unfounded. Media have become more violent, with messages targeting younger
and younger audiences. The prevalence of gun violence in movies has significantly increased over
the last few decades, particularly in films rated PG-13 (Romer et al., 2017). Compared to real-world
statistics, fictional television shows overrepresent murder, sexual assault, robbery, and other types of
violent crime, while downplaying property crimes (Soulliere, 2003).
Violence is prevalent in popular video games, many of which objectify, sexualize, and degrade
female characters (Burgess et al., 2007; Dill & Thill, 2007; Downs & Smith, 2010; Haninger &
Thompson, 2004). These games also convey that certain behaviors explain or justify violence, dehu-
manize opponents, and minimize consequences (Hartmann et al., 2014). And yet, certain types of
violent acts appear more often than others do in media. For example, television shows and movies
often depict strangers committing violent crimes. Crime victims in fictional dramas are dispropor-
tionately White female characters; these characters are also most likely to experience sexual assault
(Parrott & Parrott, 2015). Television shows often perpetuate rape myths, even on channels aimed at
a female viewing audience (Merken & James, 2020). Often absent, though, are male sexual assault
survivors in fiction, even though men also experience sexual violence (Smith et al., 2018).
Depictions of intimate partner violence have varied across source and genre. Crime reality shows
frequently include domestic violence, albeit in one-dimensional frames that reinforce stereotypes
about abusive relationships (Carmody, 1998). Fictional media have underrepresented the prevalence
of domestic violence. Film depictions typically focus on men as abusers and their female spouses as
victims, with “escape” scenes, including femicide, as the resolution (Lenahan, 2009; Wheeler, 2009).
In real life, approximately one-third of women and one-fourth of men have experienced a form of
physical violence from a partner (Black et al., 2011). Acts of intimate partner violence make up 15%
of violent crime (Truman & Morgan, 2014). Nearly half of all sexual assault survivors reported that
they were raped by people they knew (Breiding, 2014).
Media content also distorts who commits crime and protects society. Dixon (2017) found that in
a random sample of TV news, White people were overrepresented as victims and officers and were
less likely to be shown as perpetrators. In comparison, the percentage of African American victims,
officers, and perpetrators in television news reflected crime reports, whereas Latinx victims and
officers were underrepresented. The consumption of violent movies and television can significantly
influence attitudes toward real-life perceptions of violence. On one hand, consumption of violent
media can shape one’s belief about the likelihood of real-life crime—the cultivation effect, as first
demonstrated by Gerbner and colleagues in the 1970s (Gerbner & Gross, 1976). Heavy viewers are
the most affected, perceiving a mediated world. This influence has also been noted in certain genres
of television. Kahlor and Eastin (2011) found that soap opera viewing was positively associated with

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rape myth acceptance, whereas consuming crime shows produced a negative association. Higher
television consumption has also been positively correlated with beliefs in rape myths—that sexual
assault victims contribute to their crimes (Kahlor & Morrison, 2007). This connection is particularly
strong in certain types of television. Viewing football, basketball, or sports on ESPN, on TV, for
example, has been positively correlated with the sexual objectification of women, hostile sexism, and
rape myth acceptance (Custers & McNallie, 2016).
Consumption of violent media has been associated with reduced empathy, increased aggression,
and a desensitization toward violence (Anderson & Bushman, 2001; Engelhardt, Bartholow, Kerr, &
Bushman, 2011; Greitemeyer & Mügge, 2014). This correlation between violent media use and
aggression has been noted across various cultures (Anderson et al., 2017). Furthermore, sexual-
ized video games can also prompt online sexual harassment toward women (Burnay et al., 2019).
Increased exposure to fictional media content can also desensitize parents, who then permit their
children to view films with such themes at younger ages (Romer et al., 2014). This effect has been
demonstrated in other forms of media as well. Playing video games over time has been shown to
increase rape myth acceptance along with hostility and aggression toward women (Fox & Potocki,
2016).
Media also play a role in spreading information about violent acts and injustice. For example,
cases of police brutality, like the murder of George Floyd, were disseminated through individual
social media accounts, sparking weeks of protests around the world (Taylor, 2020). Through social
media, people can rally together to fight violent acts and injustice. #BlackLivesMatter and other
contemporary social movements emerged through viral dissemination on various social media sites.
Many of the origins began by regular people sharing citizen-captured video of police brutality and
other acts of injustice, raising awareness of the violent act by bringing it into the public arena.
Social media have also been used to garner widespread support against harassment and sexual
assault. In 2017, celebrity Alyssa Milano used activist Tarana Burke’s phrase “Me Too” as a means
to unite and give voice to women who had experienced sexual harassment and sexual assault (Har-
ris, 2018). The viral explosion of the #MeToo movement helped propel women to come forward
about their experiences and prompted the introduction of approximately 200 bills against workplace
harassment, with 15 states approving forms of protection (Johnson et al., 2019). As with issues of
violence, emerging technology is also used to raise awareness of environmental issues.

Depictions of Environmental Concerns

Media outlets contribute to public knowledge and beliefs about environmental issues, which also
relate to health (see Chapter 33, this volume). From preservation to climate change, news media
have played roles in awareness, support, and activism. In the early 1900s, environmental activism
focused on conservation, as the United States, Canada, Switzerland, New Zealand, and other coun-
tries started establishing the first national parks and developing nonprofit organizations to protect
wildlife (Sood, 2012). Over the 20th century, environmental movements expanded to address other
areas of environmentalism through both public policy and grassroots actions (Dykstra, 2008). Actions
have also emerged in response to specific threats, such as the women-led Chipko movement against
deforestation in India (Shiva & Bandyopadhyay, 1986) or, more recently, the 2016–2017 Dakota
Access Pipeline protests near the Standing Rock Indian Reservation (Hunt & Gruszczynski, 2019).
Media coverage of environmental issues has rarely been unified, as activism is often clouded by
political and economic agendas. Environmental issues often become controversial, as messages about
climate change, fracking, and other environmental concerns have been conflicting and highly politi-
cized (Boykoff & Boykoff, 2004; Hmielowski et al., 2014; Mercado et al., 2014). Coverage often
varies by region. For example, Ladle and colleagues (2010) found that Brazilian newspapers covered
Amazonian deforestation much more than British papers did and more thoroughly addressed the

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issue in relation to economic development. Similarly, the press in India produces content generally
supporting a belief in climate change, unlike many other developing countries (Billett, 2010).
Media messages do affect consumers’ knowledge and perception of different environmental issues
and events. For example, Ader (1995) identified a positive correlation between the number of New
York Times articles on pollution and its perceived salience as a public issue. The viewing of nature
documentaries and fact-based television has been linked to increased concern for the environment
(Holbert et al., 2003).
Expanding technology has opened new opportunities for public debate beyond mainstream news
outlets. Social media have been used as an outlet to discuss environmental issues. Andersson and
Öhman (2017) studied a global warming discussion among teenagers in a Swedish online commu-
nity, finding rich, educated arguments that raised awareness about political, moral, and world issues.
With the Dakota Access Pipeline protests, the Standing Rock Sioux tribe and allies used #NoDAPL
to expand the reach of in-person activism, broadening the issues to include “the defense of Native
land rights, as well as environmental protection and critiques of neoliberal governance” (Deem,
2019, p. 114). In other words, social media outlets can provide a public space for discussion outside
of what is covered in mainstream news. This effect applies to concerns about media’s influence on
body image.

Body Image
Scholars and public health advocates have been concerned about media’s perpetuation of unrealistic
beauty ideals, celebrating thin, White women as models of beauty (Redmond, 2011). Men also
have faced unrealistic media images, which present narrow definitions of masculinity and body
type, and they have been increasingly objectified in media representations (Jung, 2011; Rohlinger,
2002). Slater and Tiggemann (2014) found that magazine and soap opera consumption increased
the desire for thinness in adolescent boys. Reading men’s magazines can also affect the drive for a
muscular physique and lead to eating disturbances in young adult men, especially those who are
single (Giles & Close, 2008).
Media content can shape perceptions of body image, defining what are considered “attrac-
tive traits,” which are then often internalized by (especially early adolescent) consumers (Tatan-
gelo & Ricciardelli, 2017; Te’eni-Harari & Eyal, 2015). In particular, a strong correlation exists
between media internalization and body dissatisfaction, especially among adolescents (Rodgers
et al., 2014). The extent of this effect is mitigated by self-regulation and other factors. Girls
are more likely to compare themselves to peers in terms of appearance, whereas boys tend to
be more focused on comparing athletic ability (Tatangelo & Ricciardelli, 2017). Effects are not
limited to adolescents. Expecting mothers who spent five minutes reading magazines featuring
glamorized pregnant/postpartum women felt more negatively about their body images than did
pregnant women in a control group (Coyne et al., 2018). Social media engagement also factors
into adolescent perceptions of body image. Hogue and Mills (2019) found that engagement on
social media with attractive female peers was associated with an increase in young adult women’s
negative body image.
At the same time, campaigns have emerged to challenge narrow definitions of beauty in the
media. For example, the Dove Soap “Campaign for Real Beauty” purposefully included women
across age, race, and ability to model their product. The widely successful campaign crossed plat-
forms and stretched for more than a decade, doubling sales for the company (Bahadur, 2017). Other
companies have followed suit in starting to diversify who is featured in their ad campaigns (Bue &
Harrison, 2019). That said, even expanded roles still continue to perpetuate many aspects of con-
ventionally idealized beauty, such as body size, complexion, and desired features. Media messages
also contribute to health behaviors.

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Depictions of Risky Behavior

In the 1950s, studies were first published that demonstrated the link between smoking and cancer
(Hammond & Horn, 1954). Over the next few decades, research began expanding to address the
influence of other behaviors on health, such as the impact of diet and exercise on the cardiovascular
system. Media messages can play significant roles in the extent to which risky behaviors are carried
out. Watching people smoke in movies significantly increases the likelihood that teenagers will try
smoking (Glantz, 2003). The amount of television viewing time has also been positively correlated
with younger ages for smoking initiation (Gutschoven & Van den Bulck, 2005). Similarly, adolescent
vaping use has been linked to frequent and heavy exposure to e-cigarette advertisements (Cho et al.,
2019; Dai & Hao, 2016). Phua et al. (2018) found that Instagram e-cigarette ads featuring celebrities
produced more significant positive attitude changes than ads without celebrities.

Diversity in Media and Health Messages

Historically, mainstream media programming has been limited in diverse messages and representa-
tions. Marginalized groups were either nearly invisible, as exemplified by Hispanic Americans, or
heavily ridiculed and stereotyped, as evident in the early to mid-century depictions of African
Americans or in the othering of Roma in outlandish “gypsy” roles (Clark, 1969; Schneeweis & Foss,
2016). In more recent years, representatives of some marginalized groups have begun to appear more
in film and television, first as sidekicks or tokens and then, later on, in a diverse array of characters.
Not all othered groups have been treated the same way in media representations. For example, Asian
American characters have primarily been portrayed as a “model minority,” as Ho (2016) explained
in an analysis of the character Glenn in the zombie drama The Walking Dead. Even so-called posi-
tive stereotypes are problematic as they both restrict and generalize assumptions about a population.
Media also have offered unequal representations of people with disabilities. For example, characters
with Down syndrome were authentically played by actors with Down syndrome long before other
types of disabilities were accurately represented (Rider, 1994).
LGBTQ representation has also varied. Hart (2000) outlined how gay men shifted from non-
recognition in the 1960s to becoming more visible, yet ridiculed, in the 1970s and 1980s, to finally
beginning to be more widely and accurately portrayed in the late 1990s. Depiction of queer char-
acters further expanded in the 2000s, particularly in the fantasy genres (Dhaenens, 2013). How-
ever, normative transgender identities have been nearly invisible until recent years—as this group is
stigmatized in both news and entertainment (Billard, 2016). Persons of color who are LGBTQ or
in other marginalized intersectional positions have been even more hidden. Thus, positive repre-
sentations of transgendered women of color, for example, as with actor Laverne Cox, are especially
important (Glover, 2016).
The expansion of roles is demonstrated in shifts in the genre of medical dramas. Until the 1970s,
doctors on television were all Caucasian, heterosexual, able-bodied men (Turow, 2010). Gradually,
men of color and White women began to appear, either in token roles or in single-episode story arcs,
in which the “othered” character committed a dire mistake (Foss, 2014). Dramas in the 1980s started
to include token diverse roles, including Dr. Philip Chandler (played by Denzel Washington) and a
few female physicians. By the 1990s, medical dramas featured people of color, LGBTQ characters,
and doctors with disabilities—a trend that increased even more in the 2000s with Grey’s Anatomy
(Foss, 2014). In fact, Jain and Slater (2013) found that female physicians are no longer underrepre-
sented in medical dramas. However, reality television, like Big Medicine and Dr. 90210, has continued
to disproportionately feature male doctors (Jain & Slater, 2013).
Why do representations matter, particularly in regard to health? Fictional narratives have been
shown to effectively teach viewers about medical terminology and concepts and to model possible

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decisions that one might encounter in the hospital (Gauthier, 1999; Østbye et al., 1997). Entertain-
ment has also been used as a teaching tool for medical students (Rothman, 1999).
In addition to conveying specific information, media also shape people’s perceptions of different
groups of individuals. Shifting representations in popular culture helps to challenge stigma against
marginalized groups. This has certainly not happened all at once or uniformly across various social
intersections. Media messages can help challenge stigma and discrimination. Schiappa et al. (2006)
found that frequent viewing of the television show Will & Grace, paired with heightened parasocial
interaction with the characters, correlated with lower sexual prejudice, particularly for those with
little real-life contact with gay men. Social media outlets can also work as empowering spaces. Twit-
ter has been used to share helpful health information for transgender men and women on general
healthcare, diet, mental health, transgender healthcare, and well-being (Karami et al., 2018).

Celebrity Impact on Perceptions and Behavior

We should not minimize the impact of celebrities on health perception, attitude, and behaviors.
They can be even more influential than war heroes, political figures, and other types of leaders
(Brown & Fraser, 2004). Even before the era of “influencers,” people were shaped by the words and
behaviors of their favorite athletes, actors, and others. In the 1980s, for example, rates of breast-
conserving surgery declined 25% after former First Lady Nancy Reagan had a mastectomy, rather
than breast-conserving surgery (Nattinger et al., 1998). In another example, after basketball star
Magic Johnson announced that he was HIV positive, calls to the Centers for Disease Control and
Prevention’s National AIDS Hotline rose from 7,372 in the previous 90 days to more than 28,000 in
a single day (Centers for Disease Control, 1992). Fans of his also expressed greater concerns about
sexual responsibility (Brown & Basil, 1995). People who identified and admired baseball player
Mark McGuire in the late 1990s were more likely to know about a supplement he endorsed and to
be concerned about child abuse, mirroring his advocacy for the cause (Brown et al., 2003). Follow-
ing Today Show host Katie Couric’s month-long colorectal cancer awareness campaign, colonoscopy
rates significantly increased (Cram et al., 2003). An individual’s identification with a celebrity or
fictional character is positively correlated with the adoption of the modeled behavior (Brown &
Fraser, 2004).
On May 14, 2013, The New York Times published “My Medical Choice,” the op-ed of actor
Angelina Jolie, in which she explained how her mother’s death from cancer and her positive screen-
ing for the BRCA1 mutation that increases cancer risk had prompted Jolie to undergo a risk-
reducing double-mastectomy (Jolie, 2013). Jolie’s widely publicized decision spurred women to
seek more information on the gene mutation and consider genetic testing. Within a week of Jolie’s
announcement, online traffic to the National Cancer Institute’s webpage on preventive mastecto-
mies had a 795-fold increase (Juthe et al., 2015). Testing for BRCA1 also dramatically increased
(Liede et al., 2018). Furthermore, risk-reducing mastectomies also increased at a statistically signifi-
cant level (Liede et al., 2018). Effects were noted in other countries as well. A study of 21 regional
genetics centers in the United Kingdom revealed that referral rates more than doubled in the months
following coverage of the story (Evans et al., 2014). In Germany, the “Angelina Jolie effect” was
found to increase knowledge about BRCA1, motivate women to keep their scheduled appoint-
ments with genetic counselors, and encourage men to accompany their partners to clinic visits
(Evers et al., 2017). Because these effects are based on what people learn from a celebrity and not
from a carefully planned campaign, there can be concerns about consequences of such announce-
ments. Their persuasive effect might be limited, for example. In addition, information may not be
conveyed accurately or completely. For instance, in a national representative survey, although three
out of four Americans were aware of Jolie’s news story, fewer than 10% understood the BRCA gene
mutation and the risk of developing cancer (Borzekowski et al., 2014). For health campaigners who

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are hopeful about persuasive effects from celebrity announcements, supplementary information may
be indicated.
Even apart from this issue, not all celebrity influences yield positive effects, as is evident from
actor Jenny McCarthy’s crusade against immunizations. Her battle was rooted in her unsubstantiated
claim that vaccines had caused her son’s autism (Kata, 2012). Why do celebrities have an influence
on consumer attitudes and behavior, though? As you will read later in this chapter, parasocial inter-
action, or the one-sided relationships that people form with celebrities, contributes to their overall
influence (Horton & Wohl, 1956). The more that people identify with and aspire to be with celebri-
ties, the greater the extent of their effect, even when they lack expertise or professional knowledge
on the particular issue (Brown & Fraser, 2004).

Entertainment-Education
The use of entertainment to deliver educational health messages, or “edutainment,” can be an effec-
tive means of reaching and influencing consumers. Singhal and Rogers (1999) described entertain-
ment-education as “the process of purposely designing and implementing a media message both
to entertain and educate, in order to increase audience members’ knowledge about an educational
issue, create favorable attitudes, and change overt behavior” (p. 9). Edutainment campaigns were first
initiated by television writer Miguel Sabido, who crafted a series of soap opera narratives to educate
the viewing audience on literacy, family planning, and other prosocial issues (Sabido, 2004). Noting
its effectiveness, numerous other edutainment campaigns adopted Sabido’s approach (Poindexter,
2004). Edutainment campaigns aim to both positively influence individuals and shape the overall
cultural climate. They can be useful in breaking through the cluttered, saturated media landscape,
helping to reach adolescents or other resistant audiences. This approach is also helpful in areas with
lower literacy rates, in which live performances, songs, and radio have been used to convey health
messages.
With edutainment, advocacy groups or individuals work with those producing entertainment
in order to convey accurate information on a particular issue to the target audience. How does this
work? For campaigns using television as the delivery system, a group or person contacts the pro-
ducers of a particular show about the possibility of embedding a message in an upcoming episode.
If producers agree, they work with members of the advocacy group to write the script, ensuring
that the message is clear and accurate and fits within the parameters of the show. Once the episode
airs, the advocacy group may do an audience survey or other follow-up to measure the reach and
effectiveness of the message. For example, a 2001 episode of the hit sitcom Friends included a sto-
ryline about condom efficacy and pregnancy. Unbeknownst to viewers, this plot was part of a study
about family communication and was followed by a national survey (Collins et al., 2003). Results
suggested that adolescents who viewed and talked about the episode with an adult learned more
from the prosocial storyline, demonstrating both the value of entertainment-education and com-
munication with teenagers about such messages (Collins et al., 2003). When edutainment strategies
are well executed, viewers learn from the show without even realizing that they are viewing health
campaigns. For example, the Harvard Alcohol Project in the late 1980s used news and entertain-
ment media to successfully introduce the concept of having a designated driver (Winsten, 1994).
Television shows like Cheers featured posters and storylines on using designated drivers to effectively
educate the public on the importance of safe driving.
How does entertainment influence health attitudes and behavior? Parasocial interaction high-
lights one way that entertainment influences consumers. First outlined by Horton and Wohl (1956),
the concept of parasocial interaction (PSI) describes how people identify and form familiar con-
nections with celebrities and fictional characters (Brown & Fraser, 2004). A person’s or character’s
attractiveness, qualities, and actions can enhance this relationship, as can the perceived “realness” of

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a character, varying camera angles, and aesthetic features (Perse & Rubin, 1987; Rubin & McHugh,
1987). The consuming experience affects the strength of the parasocial relationship, as binge-watch-
ing can magnify this bond. Tukachinsky and Eyal (2018) explained, “The more back-to-back epi-
sodes that viewers consumed, the more they interacted with the characters, reflected upon them,
and empathized with them,” demonstrating the impact of “binge-watching” (pp. 11–12). Online
engagement can also intensify this relationship, as “Social media provides audience members with
the capability to actively communicate their PSI directly to celebrities as well as access others who
share a parasocial attachment with the same media figure” (Sanderson & Cheong, 2010, p. 329).
This emotional bond strengthens the influence of prominent entertainers over people. As such,
when famous people die or fictional characters leave a show, viewers may grieve as though they have
lost someone in real life. Cohen (2004) articulated this effect: “Because attachment relationships
provide closeness and security, their dissolution is likely to be accompanied by distress” (p. 190). This
grief can inspire fans to continue celebrities’ social causes after death. After Carrie Fisher died in
2016, people tweeted #InHonorOfCarrie, both to pay tribute and to promote awareness of mental
health issues, continuing the actor’s advocacy (Park & Hoffner, 2020). Decades after the death of
Elvis Presley, his memory continues to shape people. Fraser and Brown’s (2002) ethnographic study
of Elvis impersonators suggested that these fans modify their own value systems and lifestyles to
model Elvis Presley.

Future Research
Emerging research on media effects parallels the expansion and development of new technologies. In
the last decade, scholars have focused on the use and function of social media platforms in relation to
health issues. For example, posts to social media platforms can be used to track the dissemination of
information or even the spread of disease—as noted in studies on the COVID-19 pandemic in early
2020 (Qin et al., 2020). Scholars also consider the function of newer forms of media and their place
in healthcare and society, such as telehealth visits. And, as the This Is Us incident demonstrated, the
interactivity of contemporary platforms enables consumers to move from viewing fictional televi-
sion to publicly voicing their own opinions on social media, thereby influencing others’ experiences.
Future research will continue to delve into digital spaces, examining the effects of both industry-
generated media and citizen-produced content.
In addition, more studies are needed that address the impact of media on health knowledge, per-
ceptions, and behaviors of marginalized populations. For example, scholars should examine the ways
in which people with disabilities have used and created media content to make sense of the COVID-
19 pandemic. And with the COVID-19 vaccine distribution, the effectiveness of campaigns to over-
come hesitancy are worthy of study, particularly for underserved communities. Research on both
industry-generated and citizen-produced content related to the pandemic will play a significant role
in how this pandemic is captured and remembered.

Conclusion
Although we often hear the term “media” used as a homogenous group, media is a broad term,
encompassing many different outlets for both mass and individual expression. The pervasive roles of
news and entertainment mean that people are constantly consuming messages. As such, the content
of advertisements, books, articles, memes, songs, and other products shape what people know, think
about, and believe, as well as their decisions and actions. Concerning health, these messages then
have heightened importance, with potential short- and long-term effects. Researchers may not typi-
cally see a direct correlation between a media message and public behavior, as evident with This Is
Us and Crock-Pot, but this impact is ever present and ever changing.

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CONSUMER ADVERTISING AND
HEALTH COMMUNICATION
Michael Mackert, Deena Kemp, Daniela De Luca,
and Rachel Esther Lim

Corporate advertisements for health-related products or with health-related themes not only pro-
mote brands, potentially improving their commercial viability, but also can influence consumers’
health beliefs and behaviors, with both positive and negative outcomes. Given the substantial budg-
ets employed in the advertising of health-related products, these advertisements are among the most
prominent health messages people encounter and thus merit attention from health communication
researchers, those working in public health, and policy makers.
This chapter provides an overview of health advertising, while also offering details about
several specific contexts that have been active areas of research. The chapter begins with a look
at advertising regulations and guidelines, followed by a review of message features and effects. It
continues with reviews of direct-to-consumer (DTC) prescription drug advertising, issues related
to health and nutrition advertising, corporate social responsibility (CSR) efforts by commercial
brands, and advertising to children and teens. The chapter concludes with directions for future
research.

Advertising Regulations and Guidelines

In the United States, advertising is largely controlled by the Federal Trade Commission (FTC). The
FTC Act regulates and “prohibits unfair or deceptive advertising in any medium. That is, advertising
must tell the truth and not mislead consumers” (Federal Trade Commission, 2000, p. 6). In health-
related advertising, objective health benefit claims must be substantiated with competent and reliable
scientific evidence at the time of dissemination (Federal Trade Commission, 2001). This is to pro-
tect consumers from deceptive advertising practices. Despite regulations, many firms still engage in
such deceptive practices by promoting unsubstantiated health claims. For example, the FTC issued
a complaint charging POM Wonderful with making false and unsubstantiated claims that their
products could prevent or treat heart disease, prostate cancer, and erectile dysfunction (Mello, 2010).
Although POM argued that their health claims are supported by medical research, the FTC alleged
those ads were misleading by selectively highlighting favorable studies and not disclosing study limi-
tations (Hatch & Buttrick, 2019).
Health-related claims can be misleading if relevant information is left out or if the claim
implies something that is not true (Federal Trade Commission, 2000). In general, there are
five different types of claims that are truthful but whose implications are false and misleading
(Hastak & Mazis, 2011).

290 DOI: 10.4324/9781003043379-25

 Consumer Advertising, Health Communication

Omission of Material Facts

A health-related claim can mislead by omitting a material fact or facts about the product, such as
by failing to disclose limiting conditions necessary for the correct interpretation of the claim. For
example, Claritin reformulated their loratadine into a liquid-filled capsule and advertised, “Claritin
Liquigels are new.” However, the claim failed to present the fact that the active ingredient had been
on the market for a long time (Faerber & Kreling, 2014). This may mislead consumers by letting
them draw broad inferences from a claim based on the physical appearance of the product.

Misleading Due to Semantic Confusion

A health-related claim can mislead by the use of confusing language or symbols in advertisements.
Semantic confusion occurs because a promotional claim uses a word or phrase that is similar to a
more familiar word or phrase. For example, a pasta brand introduces their new sauce as “Fresh Ital-
ian,” yet the sauce contains remanufactured tomatoes.

Intra-Attribute Misleadingness
A specific attribute in a claim can lead to a misleading inference about the same attribute. An attribute
uniqueness claim occurs when consumers infer that the labeled attribute is unique to the brand. For
example, “Brand X has no cholesterol” can be interpreted that Brand X is the only brand with-
out cholesterol. Furthermore, an attribute performance claim occurs when consumers infer that the
product is considerably better than its actual performance. For example, “Contains oat bran” can be
interpreted to mean that the product contains a substantial amount of oat bran.

Inter-Attribute Misleadingness
A claim about an attribute can engender misleading inferences about another attribute of the prod-
uct. For example, Brand X is low in cholesterol; thus, Brand X is low in fat. This is based on con-
sumers’ belief that the attributes—cholesterol and fat—are correlated.

Source-Based Misleadingness
Endorsements can mislead by using biased experts or consumer testimonials. Consumers may inter-
pret an endorsement of experts as a representative sampling, yet marketers may only include people
who support the claim.
Although the FTC largely regulates advertising, its guidelines are often vague in practice. This
creates challenges for advertisers to make ethical decisions while crafting a commercial message that
will be effective in selling the product (Drumwright & Murphy, 2009). For example, the FTC does
not provide specific guidelines regarding how to communicate disclaimer labels that are imposed
to clarify potentially misleading or deceptive statements made within an advertisement (Stern &
Harmon, 1984). Under ambiguous guidelines, manufacturers can legally, but perhaps not ethically,
employ disclaimers that rapidly deliver complex or negative information but that consumers cannot
comprehend (Herbst et al., 2013).
Similarly, the FTC relies on the alcohol industry’s self-regulatory standards to control alcohol
advertising content or placements targeted to underage groups (Federal Trade Commission, 2000).
As a self-regulatory effort, companies place warning labels about underage drinking, yet the effec-
tiveness of the warning labels is questionable because there are no specific guidelines about how to
communicate this information. Further, given that advertisers have the freedom to make their own

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decisions regarding how the warning labels and socially responsible messages are crafted and targeted,
those messages can often still be used to promote the brand and its product (Smith et al., 2014).

This section illustrated the general principle underlying how regulations work in the context of
health-related advertising. Although regulations help to protect consumers from unfair and decep-
tive advertising practices, more research is needed to understand the limitations in those regulations
and the effectiveness of voluntary standards in protecting and promoting consumers’ health.

Message Features and Effects

Understanding how health-related product ads influence both brand and health outcomes has been
a major focus of the research on message features and effects. Brand outcomes include product
perceptions, such as nutritional value or healthiness; brand evaluations, such as brand quality or
credibility; and consumption behaviors, including intent to purchase, product switching, and brand
loyalty. Health-related outcomes have been examined at both the individual and population level.
Individual health outcomes may include seeking information about certain health conditions or
scheduling an appointment with a healthcare provider, intentions to uptake healthy products or stop
using unhealthy ones, or performing other healthy behaviors such as exercise or diet adherence.
Population-level studies look at the prevalence of behaviors in a society, such as sales of fiber-rich
cereals or demand for nutritional supplements, particularly following shifts in advertising practices
or policies (Rao & Wang, 2017). A notable segment of studies applies interpretivist frameworks,
exploring the various ways consumers experience and make sense of health-related ads (see Dodds
et al., 2008). Critical-cultural perspectives, though limited, question both beliefs about and com-
mon approaches to examining the effects of advertising on health, some arguing for a greater focus
on societal forces (see Hoek & Gendall, 2006). Nonetheless, this research predominantly follows
the post-positivist paradigm, seeking to predict the influence of messages on consumers’ attitudes,
intentions, and behaviors.
Ideally, health-related ads would have positive brand and health outcomes. One study found
a significant relationship between exposure to statin drug advertisements and increased exercise
(Niederdeppe et al., 2017). However, brand and health outcomes can also be at odds, as the same
study found that exposure to these ads was more strongly associated with increased visits to fast food
restaurants. Perceiving a product as healthy may benefit a brand, particularly when that perception
increases product consumption. But, if such a perception is inaccurate or misleading, it can under-
mine health outcomes. Conversely, if perceiving a product as healthy makes it less appealing, then
sales may suffer with consumers choosing less healthy alternatives.
Advertisements often shape perceptions about product health benefits by including claims about
their content or function. Content claims refer to statements about a product’s ingredients or compo-
nents (e.g., nutrient-content claims). Content claims may highlight product attributes that are viewed as
healthy (e.g., high in antioxidants) or indicate that a product does not include or has minimal elements
considered unhealthy (e.g., BPA-free, low sodium). Functional claims extend from regulatory guidelines
defining “functional foods” as those that have a physiologically active function (Yamada et al., 2008).
Such claims may state or imply a connection between using a product and achieving a health outcome.
Although restrictions apply to making claims about preventing or treating diseases, brands may make
claims about normal bodily functions, for example, stating that “calcium builds strong bones” (Federal
Drug Administration, 2018). Simply listing a component known to have a health function can lead to
more positive product evaluations (Chrysochou & Grunert, 2014).
Health claims may also produce a halo effect. Impressions created by reference to a healthy ingre-
dient or natural process may be extended to evaluating other aspects of the product as healthy, even
when such a perspective would not be logically justified. Halo effects have been found for a variety

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of unhealthy products, such as Natural American Spirit Cigarettes, which uses images of water and
plants and references to eco-friendly processes in its advertisements (Iles et al., 2020).
Process claims, in particular, may trigger heuristic processing—circumventing critical analysis of
the product (Gomez, 2013). Process claims include messages such as non-GMO, organic, or all natural
that refer to how products are produced rather than their contents or functional health benefits.
The repetition of dubious health claims may also increase consumer perceptions that the claims are
valid. This so-called truth effect appears to be bolstered by appeals to emotion as well, with consum-
ers focusing on their feelings rather than systematically processing the claim’s validity (Sundar et al.,
2015). The halo and truth effects may explain, in part, the finding that television ads for unhealthy
products make health claims more frequently than do ads for healthy products (H. J. Yoon et al.,
2009).
Although both functional and process claims have been shown to positively influence consum-
ers’ perceptions of a product as healthy, results are mixed on whether health claims have a similarly
positive effect on brand evaluations. In some circumstances, consumers who perceive a product as
healthy may infer negative attributes and have lower purchase intentions (Steinhauser et al., 2019).
Claiming that a product has “zero calories from sugar,” for instance, could signal that it will not taste
good and that something “unnatural” was done to alter the product’s contents.
Researchers have identified a number of factors that may improve the effectiveness of health
claims. Paek and colleagues (2011) found that the addition of an anchor, or numerical reference
point, comparing a product’s fat content to the amount of fat in similar products caused consumers
to perceive that the product was lower in fat and calories. Brand evaluations and purchase intentions
were also higher for anchored messages. Endorsements from healthcare providers, celebrities, and
product users, as well as third-party seals of approval, also boost the impact of health claims (Mineo,
2019).
These strategies, however, may only work for some products. The match-up hypothesis suggests
that consumers evaluate the compatibility of the health claim and product category. Although health
claims improve perceived healthiness regardless of product category, they appear to influence brand
evaluations more when paired with healthy versus unhealthy products (Choi et al., 2012). Yet,
unhealthy products may still benefit if the health claim seems plausible. A survey of ads for sugary
beverages found that brands often positioned their drinks as promoting broader health and well-
being goals such as aiding relaxation (Brownbill et al., 2020). Applying schema congruity theory,
Cheong and Kim (2011) found that slightly incongruous claim-product matching (i.e., health claim
for chocolate or taste claim for soymilk) created more favorable evaluations than completely congru-
ous or incongruous claims.
Consumer characteristics also play a role in moderating the effects of health claims. Health-
conscious individuals with higher levels of health-related knowledge may play closer attention to
claims. These consumers appear to find claims more believable, leading them to express more favora-
ble evaluations and purchase intentions, although they may also be more critical of ingredients or
content not covered in a claim (Paek et al., 2011). Prior experiences with the product and positive
perceptions of the brand can also bolster credibility and influence (Choi & Reid, 2018). Significant
cultural differences have been identified in consumer responses to health-related ads. For instance,
Gomez and Torelli (2015) find that when cultural identity is salient, French consumers rate products
with nutrition information more negatively than do American consumers. The authors attribute
this to differences in cultural norms regarding food enjoyment and the utilitarian focus of nutri-
tion information on health outcomes. In addition to cultural identity, consumers vary in their focus
on consumption to promote health benefits or prevent health risks, as well as their concern about
protecting themselves versus others. Advertisers can potentially match gain versus loss frames and
independent versus interdependent message frames to reach consumers based on these traits (Lee
et al., 2018).

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Advertising regulations not only affect the nature of claims advertisers can make, such as ban-
ning cigarette ads from claiming cigarette smoking has positive health effects (Witkowski, 1991),
but may also introduce additional elements that influence how consumers respond to health claims
and health-related ads in general. Many governments mandate the inclusion of product warnings for
some health-related products. As a message feature, product warnings are often designed to reduce
consumption by reducing product and brand appeal (Niederdeppe et al., 2019). However, warn-
ings may also have boomerang effects, increasing consumption and negatively influencing health
outcomes (Werle & Cuny, 2012).

DTC Drug Advertising

Only the United States and New Zealand permit DTC prescription drug advertising. In 2018, U.S.
DTC prescription drug advertising expenditures were estimated at $6.46 billion (Guttmann, 2019).
It has been estimated that in one year the average U.S. consumer watches approximately 16 hours of
DTC drug advertisements on television (Mulligan, 2011).
The rationale for allowing DTC prescription drug advertising is stated by the U.S. Food and
Drug Administration as “if done properly, prescription drug advertising can provide consumers with
important information about new prescriptions and new indications for existing prescription drugs,
as well as information about symptoms of treatable illnesses and other conditions” (“The Impact of,”
2005, p. 30). Two prominent avenues for studying DTC ads are (a) studying how prescribers and
patients process and react to DTC advertisements and (b) content analyzing different kinds of ads to
assess DTC ad substance.
Studies of DTC advertising have demonstrated both concerns and benefits, summarized in an
extensive review by Auton (2004). Examples of potential benefits from DTC advertising include
improving quality of care, reducing undertreatment of certain illnesses, increasing adherence to
prescribed medications, increasing consumers’ awareness of their health status, and educating con-
sumers (Auton, 2004). Potential concerns include causing increases in healthcare costs, contributing
to inappropriate overdiagnosis and prescribing, negatively affecting the healthcare provider-patient
relationship, failing to focus on populations impacted by health disparities, and medicalizing condi-
tions common to aging (Auton, 2004; Kaphingst, Rudd, et al., 2004).
An important area of DTC research has focused on health literacy—how people obtain, under-
stand, use, and communicate about health information (Berkman et al., 2010). In a study of TV
ads, Kaphingst, Dejong, and colleagues (2004) found that consumers were given more time to
process information about benefits than risks; additionally, most ads featured a mix of medical and
lay language and text that was difficult to read. Written materials designed to supplement television
commercials are generally above the eighth-grade reading level suggested for the general public
(Kaphingst, Rudd et al., 2004). In research focused on how adults with low literacy processed TV
ads, Kaphingst et al. (2005) found that participants correctly answered only 59% of comprehension
questions.
DTC advertising has provided an important context for a range of health communication
research, such as how DTC ads may initiate information searches (Jiang, 2018), the link between
framing statements and consumers’ interpretation of risk statements (Aikin et al., 2020), and dif-
ferential effects of varying amounts of quantitative information in ads (Sullivan et al., 2019). When
considering this broader body of literature, it is important to recognize that consumers do not
understand regulations regarding DTC advertising; the majority believe that ads must receive prior
government approval, 43% believe only “completely safe” drugs are advertised, and 21% believe only
“extremely effective” drugs are advertised (Bell et al., 2000). Ongoing research into DTC advertising
is particularly important, both to guide policy around DTC prescription drug advertising and as a

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way to guide future DTC advertising of complicated health products such as genetic testing services
and surgically implanted medical devices (Mackert et al., 2013).

Weight Loss, Nutrition, and Identity

When advertising about weight loss and nutrition, it is important to consider how audiences process
claims. According to Koskela (2014), advertising that encourages consumers to lose weight relies
heavily on the importance of appearance and health. Meanwhile, advertisements encouraging the
use of weight-loss products (e.g., exercise equipment, dietary supplements) appeal to ease of use and
short-term product efficacy. These ads can lessen guilt about eating, suspicion about the safeness of
the ingredients, and concerns related to prices.
The relationship between advertising and body image has long been studied as individuals con-
tinue to show concern with body appearance (Holland & Tiggemann, 2016). In the last 30 years,
studies have found that body dissatisfaction rates among males are increasing (see Pope et al., 2017),
making them just as vulnerable in developing body dissatisfaction as women are (Ralph-Nearman &
Filik, 2018). The idealized body image has evolved over time, and lately it appeals to fitness rather
than thinness (Peng et al., 2019). Thus, young adults often engage in muscle-building activities,
consuming dietary supplements to obtain ideal body shapes (Stanford & McCabe, 2005).
Two entities regulate dietary supplements. The FTC has jurisdiction over advertising, and the
FDA deals with labeling claims. In 1994, the enactment of the Dietary Supplement Health and
Education Act (DSHEA) led to changes in advertising (DeLorme et al., 2012). Intending to improve
access to supplement information, the DSHEA broadened the legal definition of dietary supple-
ments, withdrew manufacturers’ obligation to prove safety before advertising a product, and declared
the FDA as the responsible entity for establishing whether products are unsafe. It allowed companies
to add a disclaimer stating that products are not approved by the FDA (DeLorme et al., 2012), which
led to an increase in supplement producers and advertising.
Given these changes, Amos and Spears (2010) examined the effects of visceral cues in weight-
loss ads. By manipulating the presence of factors such as before-and-after photos and proximity
of rewards, they found that these cues influenced attitudes toward the ad and the product, buying
impulse, and purchase intention but were moderated by individuals’ involvement with body weight.
Amos and Grau (2011) investigated the role of skepticism and found that it did not greatly influ-
ence the effects of the visceral cues on individuals’ buying impulses. DeLorme and colleagues (2012)
argue that consumers who take dietary supplements are more likely to believe they know how to
evaluate them, but many lack critical assessment skills and are not skeptical enough of advertising.
Another factor commonly found in weight-loss ads is the presence of endorsers, either celebri-
ties or area experts. Celebrity spokespeople influence ad likeability and believability more than
health experts do (Wu et al., 2012). Among males, there is an inverse relationship between athlete
endorser credibility and individuals’ body image (Pickett & Brison, 2019), suggesting that including
athlete celebrities is an effective way of advertising weight-loss products among those with negative
body self-perceptions. Body image concern has been related to longer exposure to such advertise-
ments. Knobloch-Westerwick and Romero (2011) contend that people will either avoid threaten-
ing comparisons or reinterpret the information to avoid self-deflating effects. However, when the
researchers manipulated body-improvement attainability, body-dissatisfied participants viewed ideal
body images for longer periods of time. These findings suggest that individuals will tend to compare
themselves to ad models, and if the goal appears achievable, individuals will experience emotionally
inspiring effects that increase their desire to be exposed to the ads. If they perceive the standards as
impossible to attain, however, the emotional outcome will be the self-deflating effect of avoidance
(Knobloch-Westerwick & Romero, 2011).

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The reasons for consuming healthy foods and supplements and buying exercise gear are often
a combination of social, psychological, and economic factors (Conner et al., 2003). Advertising
practices try to appeal to these factors by highlighting intrinsic and extrinsic rewards. Some ads
appeal to feeling satisfied with one’s body with little effort, whereas others deal with social approval.
Descriptive and injunctive norms (see the theory of planned behavior; Ajzen, 1991) play a key role
in individuals’ interest in weight-loss and healthy products. Descriptive norms refer to behaviors that
appear typical, whereas injunctive norms refer to individuals’ beliefs that the behavior is expected
of them (Lim et al., 2020). Lim and colleagues (2020) investigated the effectiveness of appealing to
these norms in ads and found that descriptive norms increased the third-person effect (see Sun et al.,
2008). These findings suggest that individuals feel that tactics in ads that appeal to descriptive norms
influence other people more than themselves. However, the presence of injunctive norms actually
had a greater influence on participants themselves. In the context of social media, opinion lead-
ers play a significant role in influencing purchase intention of weight-loss products via these social
norms (Raghupathi & Fogel, 2013).
Individuals now have easy access to nutrition information and are becoming aware of the impor-
tance of a healthy lifestyle. Although this has led to an increase in advertising of healthy food
choices, it has also resulted in a particular challenge: health versus taste claims. Choi and Springston
(2014) assessed the effectiveness of health versus taste appeals in ads and found that individuals tend
to believe tasty foods are unhealthy. However, when advertisements showed two health appeals,
participants perceived the advertised food to be healthier than when the ads included taste claims.
Similarly, Bialkova and colleagues (2016) evaluated how nutrition claims influence evaluation and
product choice. They found that taste claims influenced the actual taste experience, although health
claims did not increase consumers’ perceptions of healthfulness. Those exposed to health benefit
claims rated product taste more negatively and showed less willingness to purchase.

Corporate Social Responsibility (CSR)

Corporate social responsibility (CSR) is a corporate commitment to improving societal well-being
through discretionary business practices and contributions of corporate resources to the benefit of
the relevant society (Kotler & Lee, 2005). In recent years, there has been an increased demand for
companies to address societal health and well-being (BSR, 2013), and companies have increasingly
responded through CSR (Barata-Cavalcanti et al., 2020). Indeed, market research indicated that 90%
of the middle market executives surveyed reported that their businesses engage in CSR, and nearly
half of them said their businesses support community health and wellness causes (RSM, 2018). Fur-
thermore, Deloitte (2019) suggested that 98% of companies surveyed reported reformulating some
of their product portfolio to align with health and wellness policies. These examples demonstrate
that health issues are becoming a part of the CSR agenda.
CSR has received attention from business and academia not only because it improves the well-
being and health of the stakeholders but also because it generates positive business benefits (Du et al.,
2010). Indeed, consumers demonstrate favorable attitudes toward companies that engage in CSR
(Chernev & Blair, 2015). These positive reactions often transfer to their evaluation of the promoted
health behaviors (Du et al., 2008). In light of this, the literature discusses key psychological processes
that underlie consumers’ reactions to CSR activities that help companies achieve both business and
social goals.
How consumers attribute a company’s CSR motive often influences their subsequent judgments
of the firm and its social initiative (Ellen et al., 2006). Ideally, consumers believe that companies
engage in a social initiative for altruistic reasons (Sen & Bhattacharya, 2001). When consum-
ers perceive public-serving motives in CSR, they typically respond positively (Chernev & Blair,
2015). Consumers, however, are aware that for-profit companies exist to make profits. Thus, when

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consumers find reasons to question the motive behind CSR actions, they generally refrain from
making positive evaluations (Y. Yoon et al., 2006). They further react negatively to a company’s CSR
when they notice self-serving motives (Wagner et al., 2009). Accordingly, it is crucial for companies
to understand factors that affect how consumers attribute the CSR motive of a company.
Fit is another key factor that drives consumer response to a company’s CSR initiative. Consum-
ers generally consider the social initiative as appropriate when the company and its supporting social
cause are highly congruent; consumers then evaluate the social initiative positively (Becker-Olsen
et al., 2006). Conversely, when consumers perceive the company and its social initiative as incon-
gruent, they typically engage in more elaboration by questioning the firm’s motive behind its CSR.
These thoughts, in turn, produce negative evaluations of the company’s CSR initiative (Rifon et al.,
2004).
Moreover, consumers often question the genuineness of CSR initiatives from controversial com-
panies, such as tobacco and alcohol companies. Controversial industries operate businesses that are
more in conflict with social values such as health (Kotchen & Moon, 2012). Their CSR initiatives
are often viewed as contradictory and focused on amending their irresponsible behaviors (Palazzo &
Richter, 2005). For example, consumers are generally hesitant to respond positively to a tobacco
company’s CSR health initiative because the core business of the company has negative health
effects. Indeed, when Philip Morris launched an anti-smoking campaign, anti-smoking activists
criticized the company harshly for promoting the message while still selling addictive and lethal
products around the world (Waa et al., 2020). The World Health Organization (WHO) called
tobacco companies’ CSR actions an “inherent contradiction” (World Health Organization, 2004).
Similarly, the public demonstrates high levels of skepticism toward the alcohol industry’s CSR
initiatives because alcohol consumption is closely connected to health and social problems (Babor &
Robaina, 2013). The industry’s CSR efforts, such as sponsoring scientific research and promoting
voluntary self-regulation standards, are viewed as an instrument to manage alcohol-related health
problems and to improve their public image (Babor & Robaina, 2013). Moreover, as a part of the
CSR agenda, the industry endeavors to communicate responsible drinking messages to consumers.
However, the effectiveness of “responsible drinking” messages has been questioned and criticized
for ambiguity that often serves to promote the product rather than protect the public (Smith et al.,
2014). Researchers have shown concerns about strategically ambiguous “responsibility” messages
that may negatively impact corporate credibility (Torres et al., 2007).

Advertising to Children and Teens

Agencies invest in advertising targeted at children and adolescents because they spend billions on
purchases and have a great impact on family purchasing decisions (Lapierre et al., 2017). However,
this is a matter of concern because advertising to children and teens frequently influences unhealthy
dietary behaviors (Boyland et al., 2016).
Story and French (2004) argue that foods high in sugar and fat are marketed to children in
television advertising, marketing in schools, product placements, the Internet, and youth-targeted
promotions. Even though such advertising declined in 2014 due to the enactment of the Children’s
Food and Beverage Advertising Initiative (CFBAI), Elsey and Harris (2016) contend that brand
exposure remains excessive and is now more common in reality-show appearances, which, in turn,
are more effective than traditional TV commercials in influencing children and adolescents (Harris
et al., 2009).
Elliot (2009) argues that cross-merchandising is an effective tool that influences children’s food
choices (e.g., superheroes in ads), as decisions are based on the aesthetics of the product and whether
it appears tasty. Children have difficulty separating fantasy from reality and understanding the persua-
sive intent in commercials (Calvert, 2008). As children age, advertisers adapt techniques to the kids’

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comprehension level. For example, instead of using cartoons, advertisements may showcase celebrity
endorsers (Boyland et al., 2012). In their preteen years, adolescents begin to show interest in other
factors present in ads. For instance, Dixon and colleagues (2014) found that both male and female
preadolescents preferred products advertised as highly nutritious, only males showed interest for
the product advertised with a male sports celebrity endorser, and premium offers did not influence
product preference among either male or female teens.
Te’Eni-Harari and Eyal (2020) contend that food advertising targeting teenagers can have addi-
tional repercussions. Arguing that advertisements usually showcase thin models promoting unhealthy
food, they examined teenagers’ perceptions of food ads. They found that even though many par-
ticipants demonstrated skepticism of ads, most have internalized the thin ideal along with a social
expectation of junk food consumption. Brown and Witherspoon (2002) argue that advertisements
cause internalization of an ideal appearance, which is concerning given that studies correlate the thin
ideal with body dissatisfaction (Rice et al., 2016).
With the advent of social media, brand placement became more common in advertising aimed
at children and teens (Van Reijmersdal et al., 2017). Brand placement refers to embedding branded
products within mass media (Karrh, 1998). As teens continue to spend increasing amounts of time
on social network sites and gaming, brand placement has adapted to the online environment (Van
Reijmersdal et al., 2010). According to Hernandez and Chapa (2010), adolescents who enjoy adver-
games (i.e., a game specifically designed around a product or service with the intention of promot-
ing it) are more likely to recognize and remember brands. Similarly, sponsorship disclosure does
not appear to undermine the persuasive effects of advertising but actually increases brand memory
among adolescents (Van Reijmersdal et al., 2017). Additionally, adolescents are more likely to share
personal information online (Walrave & Heirman, 2013) and appreciate ad personalization (Walrave
et al., 2018), only becoming concerned about privacy when ads appear deceptive or interfere with
their social media interactions (Youn & Shin, 2019).

Future Research and Conclusion

The advertising of health-related products and services is a substantial source of health messages that
consumers encounter on a daily basis, making it a rich context for health communication research.
The lessons that can be learned may have utility beyond brand or product advertising but require
researchers and policy makers to understand and separate the role of the profit motive within the
broader implications of studying health-related advertising.
Across the literature of health-related advertising research, there remain opportunities for
advancing this field in general and within specific specialties. As an example, although some
research has focused on advertising professionals who create health-related advertising (Mackert,
2011), substantial opportunities remain to better understand the processes that advertising pro-
fessionals use to create the messages that then are subsequently studied by researchers in health
communication and public health. For instance, it would be helpful to better understand how
regulations of health-related advertising affect the work of advertising professionals. Such under-
standing may help to gauge intended and unintended advertising effects, which could guide
improvements in future policies and regulations. There is also an opportunity to better understand
how advertising contributes to racial disparities, such as the kinds of product ads that do or do not
appear in ethnic media—tobacco, alcohol, processed foods—and the lack of ads for healthier prod-
ucts targeted toward some ethnic groups (Henderson & Kelly, 2005). Likewise, further examina-
tion of cross-cultural contexts would be beneficial for understanding the intersection of advertising
policy and practice differences among nations and the influence of cultural identities related to
consumption and health.

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Technological advancements have enabled targeted ads, identification techniques, and visual tes-
timonies that advertise smartphone applications and online subscriptions for personal trainers and
nutritionists (Barnes et al., 2019). To our knowledge, there is little research assessing this type of
advertising. This technology has enabled new advertising opportunities, such as the role of “fitspi-
ration” social media influencers who might be promoting health-related products; there is a need
for increased understanding of what these influencers are promoting and how consumers view the
endorsements they make.
Substantial opportunity exists to enrich research into advertising to children by incorporating
more health-related ads other than for food and beverages, such as ads for athletic apparel and
equipment or dietary supplements and daily multivitamins. To complement that, there is a need for
increased understanding of how advertising influences interpersonal and particularly familial and
social interactions around health.
Numerous studies investigate the role of CSR in terms of business benefits, yet few examine its
impact on health outcomes. As health values become an integral part of the CSR agenda and the
public’s interest in health issues rises (Barata-Cavalcanti et al., 2020), research should focus on how
corporate-sponsored health initiatives facilitate health promotion and disease prevention behaviors.
The advertising of health-related products and services is a rich and varied research context, due
in part to its prevalence: These ads are ubiquitous, and persuasive messages can influence people’s
health decisions and behaviors. It is a particularly exciting area for future research given the opportu-
nity to build on and contribute to the academic fields of both advertising and health communication.

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SOCIAL MEDIA AND HEALTH
Yan Tian and James D. Robinson

The term social media is used to refer to “Internet-based applications that build on the ideo-
logical and technological foundations of Web 2.0, and that allow the creation and exchange of
user-generated content” (Kaplan & Haenlein, 2010, p. 61). To date, social media include social
networking sites, content communities, collaborative projects, blogs, virtual social worlds, virtual
game worlds, and rating sites (Edwards, 2011; Kaplan & Haenlein, 2010). Social media provide
users not only convenient access to content but also opportunities to create and disseminate con-
tent (Zeng et al., 2010). The technology allows users access to a mass audience and provides the
opportunity for content creators to interact synchronously and asynchronously with an audience.
For example, a YouTuber who produces a video on social distancing can interact with and view
the videos shared by those viewers who make comments about their video. Clearly, social media
have changed more than the technological constraints to content creation and the opportunity to
address a mass audience.
There are 3.96 billion social media users in the world, representing 51% of the global popu-
lation (Kemp, 2020). In 2005, only 5% of American adults used social media, whereas in 2019
more than 70% of Americans were social media users (Pew Research Center, 2019a). Two-thirds
or more of the adults in developed nations such as Australia, South Korea, and Israel were using
social media (Poushter et al., 2018). Social media use is also gaining popularity in developing
countries. For instance, 75% of adults in Jordan were social media users in 2018 (Poushter et al.,
2018). Research suggests that social media are affecting patient-provider communication and the
way people access health services and can facilitate interaction, encourage the development of
online health communities, and provide new platforms for health campaigns and new opportuni-
ties for social support.
In this chapter, we discuss social media in the context of (a) health information and health
services, (b) supportive communication, (c) crisis communication, (d) health campaigns, (e)
psychological well-being and mental health, and (f) research methodology in health commu-
nication. After that, we summarize positive and negative roles of social media in health com-
munication and discuss directions for future research. Most of the research addressed in the
chapter is from a social scientific perspective. It is important to keep in mind that although we
cite the most recent data available in the chapter, many things may well have changed since
the data were published, given the constantly changing nature of social media and the ongoing
COVID-19 pandemic.

304 DOI: 10.4324/9781003043379-26

 Social Media and Health

Social Media, Health Information, and Health Services

Social media are transforming the way people access health information and health services. The
traditional health communication model, from one authority (e.g., health institutions, journalists) to
the public, has been changed into a model where everyone can be a health content creator and com-
municator using social media technologies (McNab, 2009). The 2019 Health Information National
Trends Survey (HINTS) data revealed that 25.3% of U.S. adults learned about government recom-
mendations for physical activity from social media or the Internet during the past six months, 36.7%
watched a health-related YouTube video, and 14.4% shared health information on social media sites
within the past year (National Cancer Institute [NCI], 2019). An analysis of the HINTS 2018 data
suggested that perceived quality of patient-provider communication was negatively associated with
watching health-related videos on YouTube. In other words, when individuals feel that their com-
munication with providers does not meet their needs, they are more likely to seek health informa-
tion on social media (Langford & Loeb, 2019).
Other studies also provide insights into how individuals use social media for health information
and health services. A focus-group study in Australia suggested that people used blogs, Facebook,
Wikipedia, and YouTube to seek and provide health information, but observation (i.e., reading
health information) was more common than contribution (i.e., posting health information) on social
media (Benetoli et al., 2017). The finding is consistent with earlier research indicating that the social
function of social media in health information use may be underutilized (Thackeray et al., 2013),
despite the fact that the line between health message producers and consumers is blurred through
two-way communication on social media (Tian, 2010).
Social media may be more important for those who have an imminent need for health informa-
tion or health services. A survey of German cancer patients indicated that 93.7% of the patients have
used the Internet for cancer information and 80.2% used social media to be in contact with people
about the cancer topic. The same survey also revealed that whereas 49.2% of the patients were passive
readers of cancer information on social media, 19% wrote and shared their own articles and 42.5%
became active on social media because of their first cancer diagnosis (Braun et al., 2019). Similarly,
a survey of brain tumor patients in the Outpatient Department of Royal Melbourne Hospital sug-
gested that 84.5% of the participants used the Internet, among whom 70.6% used social media.
Patients used social media to access information and to communicate about brain tumor–related
issues. Patients who used social networking sites reported improvement in areas such as receiving
new information and participating in social activities (McAlpine et al., 2020).
Social media provide access to health information to patients without temporal or geographic
boundaries, allow patients and providers the opportunity to communicate more frequently and
equally, and can increase patient comfort about initiating interaction (Hawn, 2009; Smailhodzic
et al., 2016). Interestingly enough, more than 40% of those surveyed reported that social media
information would affect their health decisions and health behaviors (Health Research Institute at
PwC, 2012). Patients, however, did not use social media to replace healthcare professionals; instead,
they used social media to complement professional services to fulfill their unmet needs (Smailhodzic
et al., 2016). This provides further support for the notion of media complementarity in health com-
munication processes (Tian & Robinson, 2008).
Information communicated via social media is not peer reviewed, and so there is always a risk
of inaccurate, misleading, or false health information being spread (Chan et al., 2020; Chou et al.,
2018; see also Chapter 22, this volume). Some of the risks include (a) misapplication of context-
specific resources, (b) echo chamber effects—individuals communicating only with people who
hold similar attitudes and beliefs, (c) individuals being exposed only to information consistent with
their own a priori preferences, and (d) individuals not having enough source information to evaluate

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the validity of information (Chan et al., 2020). In addition, social media messages may reinforce
stereotypes and stigmatize people with certain health conditions (Robinson et al., 2019) and may
even promote unhealthy behaviors (Myslin et al., 2013). Promotion of unhealthy behaviors has been
increasingly apparent during the COVID-19 pandemic. For instance, studies in the United States
(Romer & Jamieson, 2020) and in the United Kingdom (Allington et al., 2020) both found that
social media use was positively associated with belief in conspiracy theories about the pandemic and
that conspiracy beliefs negatively predicted health-protective behaviors.
Social media use for health communication can be predicted by a number of social and demo-
graphic variables. For instance, being female, being younger, having a chronic disease, having a
regular healthcare provider, and living in urban/suburban areas increase the probability of individuals
consulting online rankings of doctors, hospitals, and drug or medical treatments (Thackeray et al.,
2013). Additionally, being female, being younger, and having a regular provider increase the prob-
ability of using social media for health-related activities (Thackeray et al., 2013). Similarly, being
young and being female increase the likelihood of both health-related social networking site use and
blogging about health topics (Prestin et al., 2015). More research on predictors of specific health
communication behaviors in social media is needed to provide insights into finding ways to decrease
disparities in health information access and health communication.

Social Media, Supportive Communication, and Online Health

Communities
Social media provide new opportunities to individuals to discuss health issues, engage in supportive
communication, and develop health-related communities. Because social media can increase the
breadth and diversity of individuals’ social networks, social media can help people with different
backgrounds connect with those who have similar health experiences and support each other (Gage-
Bouchard et al., 2017a, 2017b). Supportive communication refers to “verbal and nonverbal behav-
ior that influences how providers and recipients view themselves, their situations, the other, and
their relationship and is the principal process through which individuals coordinate their actions in
support-seeking and support-giving encounters” (Albrecht et al., 1994, p. 421; see also Chapter 10,
this volume). Cutrona and Russell (1990) pointed out that social support is a multidimensional con-
struct, and they identified six distinct types of social support: emotional support, esteem support,
tangible support, information support, social integration, and support of others. All types of social
support can be communicated and enacted through social media, and similar terminologies of social
support have also been used in health-related social media research.
Social support can affect how individuals manage their health conditions and can lead to positive
health outcomes (Turner et al., 2013). A systematic review of empirical studies on social media use
in healthcare identified social support as the most common reason for social media use by patients
and found that patients used social media for emotional, esteem, information, and network support
(Smailhodzic et al., 2016). Social media contributed to patient empowerment (e.g., increased sub-
jective well-being and improved self-management; Smailhodzic et al., 2016). Furthermore, survey
data suggested that having a health concern was associated with health-related social support seeking
on Facebook, which in turn was associated with perceiving appraisal, esteem, emotional, and tangi-
ble support; only perceived emotional support, however, was positively related to health self-efficacy
(Oh et al., 2013). This finding supports the optimal matching theory (Cutrona & Russell, 1990)
because emotional support was the most commonly sought type of social support and also the only
significant predictor of health self-efficacy (Oh et al., 2013).
Research suggests that individuals use social media to provide and receive social support for a
variety of different health conditions, including asthma (Koufopoulos et al., 2016), cancer (Valle
et al., 2013), pregnancy (Hether et al., 2014), obesity (Napolitano et al., 2013), and mental illness

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(Naslund et al., 2014). An analysis of more than 3,000 comments posted to YouTube videos from
19 individuals who self-identified as experiencing mental illness (i.e., schizophrenia, schizoaffec-
tive disorder, or bipolar disorder) revealed that YouTube users provided peer support for each other
by (a) “minimizing a sense of isolation and providing hope,” (b) “finding support through peer
exchange and reciprocity,” (c) “sharing strategies for coping with day-to-day challenges of severe
mental illness,” and (d) “learning from shared experiences of medication use and seeking mental
healthcare” (Naslund et al., 2014, p. 1). These findings suggest that YouTube has the potential to
help individuals diagnosed with mental illness share experience, learn from each other, and develop
a sense of community (Naslund et al., 2014). In the same vein, adolescents and young adults with
chronic disease preferred online support groups to face-to-face communication, they felt connected
to others who were diagnosed with the same conditions through online discussions, and they indi-
cated that reading comments was helpful even to those who did not post to the forums (Low &
Manias, 2019).
Meanwhile, caregivers also use social media for supportive communication and community
engagement. A content analysis of Facebook pages by parents with children who had acute lymph-
oblastic leukemia revealed that caregivers used Facebook pages not only to document their chil-
dren’s cancer journey, share caregiving-related emotional distress, promote cancer awareness, and
raise funds but also to mobilize support and express gratitude for support (Gage-Bouchard et al.,
2017a). Cancer caregivers communicated specialized health-related information (e.g., information
on health services use, treatment protocols) and exchanged tailored emotional support (e.g., pro-
viding empathy, offering hope) with each other through Facebook (Gage-Bouchard et al., 2017b).
Results from interviews with young adult cancer caregivers revealed similar patterns. Caregivers
viewed social media updates on cancer patients as less difficult and less stressful than face-to-face
updates, and sharing cancer experience on social media helped caregivers develop connections
with people, receive tailored support, and give back to the online communities (Warner et al.,
2020).
However, both patients and caregivers face the possibility of negative consequences from using
social media for supportive communication. There is a risk they may receive messages that are not
supportive and/or make them uncomfortable for a variety of reasons (Warner et al., 2020). The lim-
ited social cues and limited interactions on social media pose challenges to the management of sup-
portive communication online (Warner et al., 2020). Individuals may also be concerned with issues
such as misinformation, privacy risks, safety, being judged, and being criticized, which may prevent
them from sharing their health experiences (Hawn, 2009; Warner et al., 2020). Social media, like
communication, are not a panacea.
Demographic and health variables can predict participation in online health-related support
groups. Analysis of ten years of HINTS data indicated that among Internet users, living in urban
areas, having a college degree, and having personal or family cancer experience increased the
possibility of participating in health-related online support groups (Prestin et al., 2015). A recent
meta-analysis of studies of social support on social networking sites revealed that females on social
network sites gave and received greater social support than did males (Tifferet, 2020). The HINTS
data, however, suggested that the traditional gender difference in support group participation
might be changing because men were equally likely to participate in online support groups as
women, with the anonymity of online communication probably making men feel more comfort-
able seeking support online (Prestin et al., 2015). As social media might be changing the gender
dynamics of supportive communication and health communities online, it is reasonable to assume
that using social media for health experience sharing, supportive communication, and commu-
nity development will be increasing. With more and more people using social media for health-
related purposes, social media are also becoming important platforms for crisis management and
communication.

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Social Media and Crisis Communication in Public Health

Social media have the capacity to function as communication and education tools in public health
crises (Sharma et al., 2017). Social media are not only important information sources for risk and
crisis communication but also platforms for the public to discuss issues related to the risks and crises
(Oh et al., 2020). Studies have examined the use of social media to communicate messages on public
crises such as floods (Sutton et al., 2015), wildfires (Sutton et al., 2014), H7N9 outbreaks (Vos &
Buckner, 2016), the Middle East respiratory syndrome coronavirus (MERS-CoV) outbreak (Oh
et al., 2020), and the COVID-19 pandemic (Chan et al., 2020).
It is increasingly clear that social media can facilitate crisis communication about infectious dis-
eases. With rapid-spreading and life-threatening outbreaks, timely and effective communication is
needed to control the crises, and social media have been used as primary information channels for
the public to receive and exchange information related to the disease during recent infectious disease
epidemics (Oh et al., 2020). Specifically, the CDC has used social media to disseminate information
on infectious disease outbreaks such as Zika, Ebola, and COVID-19.
Social media can help individuals make sense of a crisis. A content analysis of 25,598 tweets about
the 2013 H7N9 outbreak indicated that 88.3% of the tweets included sensemaking information
about the virus through placing the crisis in a framework, allowing individuals to understand what
was happening, accommodating the unexpected, identifying patterns, and suggesting interaction
(Vos & Buckner, 2016). Furthermore, a study of the 2015 MERS-CoV outbreak in South Korea
found that exposure to risk information on social media was positively related to fear and anger,
which, in turn, were positively related to individuals’ personal-level risk perception, and this per-
sonal-level risk perception was positively related to preventive behaviors (Oh et al., 2020). In other
words, social media shape individuals’ risk perceptions and preventive behaviors through emotions
such as fear and anger (Oh et al., 2020).
A recent study of using social media to disseminate information on COVID-19 also illustrates the
power of social media in facilitating timely communication of information during a pandemic. The
Prince of Wales Hospital in Hong Kong developed an infographic addressing principles of airway
management to help control infection and protect staff and patient safety during the COVID-19
pandemic (Chan et al., 2020). The infographic was communicated through social media platforms
(Twitter and WeChat) and the organization’s website. The international community responded to
this information dissemination method rapidly and effectively, as locally facilitated translations into
multiple languages (e.g., Italian, Polish, Turkish, Japanese) were completed and made available to
users within ten days. The infographic was also edited to accommodate local practices. Within one
month of initial publication of the infographic, it received 63,440 impressions on Twitter, and many
reputable health organizations in the world (e.g., Australian and New Zealand College of Anaesthe-
tists, Brazilian Anaesthesiology Society) have used the infographic as a source for their own com-
munities (Chan et al., 2020).
Although social media can facilitate communication in public health crisis management, infor-
mation about health crises on social media could be misleading or insufficient. For instance, despite
the fact that Facebook posts with accurate information on the Zika virus led to a significant number
of Facebook users communicating about this health crisis, misleading posts that perpetuated con-
spiracy theories and unfounded rumors were much more popular than posts that communicated
accurate information (Sharma et al., 2017). In addition, content analysis of tweets about the H7N9
outbreak revealed that whereas most tweets had sensemaking information about the virus, less than
2% of the tweets covered efficacy information (e.g., travel restriction, hand washing), indicating
the limitations of Twitter messages in helping people respond appropriately to the epidemic (Vos &
Buckner, 2016). Like all too many information campaign efforts, too little regard is given to the
importance of efficacy in the development and communication of social media messages.

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Social Media and Health Campaigns

Social media are being used increasingly in health campaigns and health education programs
(Capurro et al., 2014; Gold et al., 2011; see also Chapter 23, this volume). Much like their tradi-
tional mass media counterparts, campaign designers develop messages to increase audience aware-
ness (Platt et al., 2013), offer education and instruction (James et al., 2013), and ultimately persuade
the audience to change their attitudes and behavior (Laranjo et al., 2015). Social media campaigns
and interventions have been shown to increase real-time interactivity (Owen & Humphrey, 2009),
mobilize people and increase engagement (Paek et al., 2013), and influence health behaviors (Lar-
anjo et al., 2015) in a variety of contexts. Theories that are frequently used in traditional education
and campaign programs (e.g., extended parallel process model, theory of planned behavior) can be
applied to social media-based education and campaign programs, and social media’s social and com-
municative functions can be integrated into campaign and education research (e.g., Emery et al.,
2014; Namkoong et al., 2017). Because the HINTS FDA 2015 and 2017 data indicated that about
30% of U.S. adults had seen, heard, or read a message about health effects of tobacco use from social
media during the past 30 days (NCI, 2015, 2017), we focus on social media and anti-smoking
campaigns in this section to illustrate the role of social media in communicating health campaign
messages.
Twitter is particularly useful for dispensing campaign messages to the public because of the built-
in communication tools that include the opportunity for users to repeat or retweet the messages of
others (Boyd et al., 2010). Chung (2016) reported that 40% of tweets about the CDC’s “Tips From
Former Smokers” (Tips) campaign were posted by individuals and 30% were from nonprofit organi-
zations, indicating the importance of individual social media users and nonprofit organizations to
the success of government-initiated campaign messages. Meanwhile, the fact that 70% of the tweets
were retweets and included hashtags suggested that Twitter can easily help disseminate campaign
information in efficient ways (Chung, 2016).
In terms of audience acceptance, Emery and colleagues (2014) analyzed tweets related to the
Tips campaign and found that most of the tweets indicted acceptance of campaign messages. This is
consistent with research suggesting that the campaign produced a 12% increase in quit attempts and
may have added a tremendous number of quality-adjusted life years to the U.S. population (McAfee
et al., 2013). Emery et al. (2014) further argued that the fear responses produced by the “hard hit-
ting” or graphic messaging approach used in the campaign may have helped produce changes in the
audience’s attitudes and beliefs, which could potentially have affected audience behaviors. Analysis
of YouTube videos from the Tips campaign also suggested that comments on the videos had more
positive emotions than negative emotions and the majority of the comments supported the cam-
paign cause (Chung, 2015).
Namkoong and colleagues (2017) investigated the effects of interactive communication in an
anti-smoking campaign on social media. They found that the interactive social media campaign
increased further information seeking online and decreased both descriptive and subjective norms
on smoking. They also found that the descriptive norms mediated the effect of the interactive cam-
paign on intention to smoke and that further information seeking from the Internet mediated the
effect of the campaign on attitudes toward smoking. The study highlighted the importance of social
interactions in social media campaigns (Namkoong et al., 2017).
Research discussed in this section reveals the positive role of social media in disseminating health
campaign messages. Users generally respond positively to campaign messages distributed on social
media platforms, although two-way communication is limited (Chung, 2016). It is important to
encourage social media users to contribute to the campaigns, to post relevant messages, and to
participate in relevant discussions to pursue positive behavioral changes (Namkoong et al., 2017).
It is also important to recognize how the ubiquity of social media in terms of content creation can

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be a source of inaccurate health information and the appearance of norms that may or may not be
veridical with reality.

Social Media, Psychological Well-Being, and Mental Health

It is well documented that social media can affect individuals’ psychological well-being and mental
health. As young adults and adolescents are more likely to be frequent social media users, they are also
more likely to experience negative consequences of social media use. Theories such as social com-
parison theory, social cognitive theory, and objectification theory have been applied to research on
the relationship between social media use and psychological well-being and mental health (McCrory
et al., 2020). A systematic narrative review provided mixed evidence on social media’s effects on
adolescent well-being (Best et al., 2014). On the one hand, social media use can help increase ado-
lescents’ self-esteem, perception of social support, social capital, opportunities for self-disclosure,
and identity experimentation. On the other hand, social media use can also have negative impacts
on adolescents through increasing social isolation, depression, exposure to harm, and cyberbullying
(Best et al., 2014). A more recent review of research that focused on visual social media, including
Facebook, Snapchat, and Instagram, revealed that most of the studies published between Janu-
ary 2010 and March 2019 found negative relationships between social media use and young peo-
ple’s mental health (e.g., increased loneliness and depression, decreased self-esteem; McCrory et al.,
2020). Only a small number of studies identified positive effects of social media use on young people
(e.g., enhanced social connection, facilitating the expression of empathy towards others), although
these positive effects had their negative counterparts in those same studies (McCrory et al., 2020).
Numerous empirical studies have suggested negative effects of social media on young people’s
psychological well-being and mental health. For instance, a survey of a representative sample of 753
middle and high school students in Ottawa, Canada, suggested that using social networking sites for
more than two hours a day was associated with reporting poor mental health, need for mental health
support not being fulfilled, psychological distress, and suicidal ideation (Sampasa-Kanyinga & Lewis,
2015). Furthermore, a study of 386 college students in the United States revealed that time spent on
social media was related to fear of missing out (a feeling that one might be missing out on what their
peers are doing), and fear of missing out was positively related to depressive symptoms and physical
symptoms (e.g., headaches, chest pain) and negatively related to mindful attention (Baker et al., 2016).
Another important line of research focuses on the effect of social media on body image. A limited
number of studies have reported positive relationships between social media use and body image. For
example, researchers have found that taking and posting a selfie was associated with self-confidence
(Boursier & Manna, 2018) and body satisfaction (Cohen et al., 2018). More often, however, social media
use, like traditional mass media use, is associated with negative body image. Fardouly and Vartanian
(2016) found that correlational studies generally revealed that social media use was associated with a drive
for thinness, internalization of the thin ideal, increased body surveillance, body dissatisfaction, and self-
objectification. Longitudinal studies indicated that the relationship between social media use and nega-
tive body image seems to strengthen over time, whereas experimental studies suggested that the effect
of social media on body image might be limited if the exposure was brief (Fardouly & Vartanian, 2016).
A more recent review of research on the relationship among social media use, body image, and
food choices found that exposure or engagement to image-related content on social media was
associated with body dissatisfaction, dieting/restricting food, overeating, and choosing healthy foods
(Rounsefell et al., 2020). Meanwhile, a qualitative analysis identified five themes: “social media
encourages comparison between users,” “comparisons heighten feelings about the body,” “young
adults modify their appearance to portray a perceived ideal image,” “young adults are aware of
social media’s impact on body image and food choices,” and “external validation via social media
is pursued” (Rounsefell et al., 2020, pp. 19–20). Studies investigating alteration of photos on social

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media have also generally found negative relationships between photo manipulation and body image
(McCrory et al., 2020).
Given the relationship between social media use and negative body image, researchers have iden-
tified moderators that can potentially help attenuate the effect of social media on body image. Tam-
plin and colleagues (2018), for example, found that although exposure to appearance-ideal images
on social media had a negative effect on body satisfaction for young women and men, commercial
social media literacy, which measures critical thinking toward commercially generated social media
content, had a protective effect on body satisfaction: For women with high commercial social media
literacy, exposure to appearance-ideal images did not change body satisfaction significantly, whereas
body satisfaction decreased significantly for women with low commercial social media literacy.
Studies like this provide important insights into designing education and intervention programs to
decrease negative effects of social media use on psychological well-being in general and body image
in particular. Experimental studies that can control for the direction of causality are needed.
Social media also provide opportunities for people to discuss mental health issues and to engage
in social support. “Social media is changing the way people self-identify as suffering from a disorder
and how they communicate with others with similar experiences, often asking about side effects
from treatments, or sharing coping skills, and thereby feeling less isolation or stigma” (Gkotsis et al.,
2017, p. 1). As discussed earlier in this chapter, individuals who self-identified as having mental ill-
ness have used YouTube to share experience, share coping strategies, reduce sense of isolation, and
support each other (Naslund et al., 2014).
Social media users express their feelings, thoughts, and behaviors related to their mental health
on platforms such as Facebook, Twitter, and Reddit, which allows researchers a window into the
mental lives of social media users, and researchers can analyze these unobtrusive naturalistic data to
investigate the psychological well-being of individuals, as well as populations (Conway & O’Connor,
2016; De Choudhury et al., 2016). For instance, a study investigating impacts of childbirth on new
mothers’ emotional and behavioral changes suggested that new mothers’ tweets before and after birth
could help predict their risk of postpartum depression (De Choudhury et al., 2013). Similarly, De
Choudhury and colleagues (2016) studied data from mental health and suicide support subreddits to
identify the likelihood of individuals who participated in mental health discussions on Reddit shift-
ing to suicide ideation. They developed markers such as increased self-attentional focus and poor
linguistic coherence to help identify these shifts. Studying mental health–related content on social
media can contribute to our understanding of patients’ concerns from perspectives of patients them-
selves instead of from healthcare providers, and it can also help us identify the underlying mechanism
of mental health conditions (Gkotsis et al., 2017).
Information on social media, however, can also misinform users about mental health issues. An
analysis of 13,000 tweets related to five mental health conditions (autism, depression, eating disor-
ders, obsessive compulsive disorder, and schizophrenia) and five physical conditions (HIV/AIDS,
asthma, cancer, diabetes, epilepsy) revealed that compared to physical conditions, mental health
conditions were significantly more stigmatized and trivialized, with schizophrenia being the most
stigmatized condition and obsessive-compulsive disorder being the most trivialized condition (Rob-
inson et al., 2019). It is, therefore, important to increase factual information in discussions of mental
conditions on social media to reduce stigma and misunderstandings (Robinson et al., 2019). It is also
important to encourage participants in social media exchanges to provide evidence of their claims
and to correct information that is not accurate.

Social Media and Research Methodology in Health Communication

Social media are providing health communication researchers with exciting opportunities from a
methodological perspective. Although self-report, other’s report, and real-life observation continue

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to be important measurement techniques in health communication research, social media allow

researchers to reach research samples in unprecedented ways and to use more innovative measures.
Conway and O’Connor (2016) pointed out that Twitter has been used in various health research
contexts, including influenza surveillance, sentiment analysis of discussions on vaccination, analysis
of attitudes toward new tobacco products, and drug abuse investigation. Other social media plat-
forms such as Facebook and YouTube also allow researchers to gather naturalistic data and conduct
qualitative and quantitative research.
Researchers can use various research approaches and methods to study social media and health
communication. They can conduct content analysis to study content and patterns of health commu-
nication on social media, as evidenced by many studies discussed in this chapter. Researchers can also
conduct digital observation by observing peer communication in a health-related support group on
social media. Moreover, researchers can use data provided by social media to measure independent
and dependent variables. For example, the number of likes a health-related Facebook post receives
could be a dependent variable measuring attitudes toward the health message in the post. Similarly,
the number of followers that a Twitter account has could serve as an independent variable, poten-
tially predicting the influence of a specific health message disseminated by that Twitter account.
These types of measurement could complement traditional measurement techniques, and together
they could provide more comprehensive and accurate measurements of important health communi-
cation constructs. In addition, researchers have been using the big data approach to studying health
communication. As discussed in the previous section in the chapter, analyzing social media content
with a big data approach can help identify mental health issues such as depression and suicide idea-
tion in an unobtrusive manner (De Choudhury et al., 2013, 2016).

Directions for Future Research

Social media are changing the way people acquire health information, contact their healthcare pro-
vider, and interact with family and friends. In addition, social media can increase access to healthcare
services, provide avenues to give and receive social support, and broaden awareness of emerging
health crises. Social media can also play a significant role in tracking illness in ways that have never
before been possible. Furthermore, social media can be used to share health information with seg-
ments of society that are notoriously difficult to access. In much the same way that a snowball sample
can provide researchers a group of people with a particular set of characteristics, a single individual
can inform or notify one or more followers who would otherwise go unreached—who can then
spread the word using social media or face-to-face interaction.
Although social media can help people remain socially integrated, they can also be a burden and
negatively impact people’s physical and mental health. Moorhead and colleagues (2013) concluded
that using social media for health communication has many benefits, including improving interac-
tions; providing more viable, shared, and tailored information; increasing access to health informa-
tion; facilitating support; providing public health surveillance; and potentially influencing health
policy. However, using social media for health communication has numerous drawbacks, including
misinformation, information overload, confidentiality and privacy concerns, potential risks of online
self-disclosure, and negative health behaviors and outcomes (Moorhead et al., 2013). From a health-
care perspective, social media can contribute to patient empowerment and more patient-initiated
communication between patients and healthcare professionals than traditional communication chan-
nels, but use of social media can also have negative effects such as decreasing users’ subjective well-
being and risking social media addiction (Hawn, 2009; Smailhodzic et al., 2016).
With social media becoming increasingly important in health communication, research is needed
to help bridge the digital, mobile, and social media divides. Despite the reality that most people in the
United States are using social media, a recent survey found that 19% of Americans still did not have

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a smartphone and more than a quarter of U.S. adults are still not using social media (Pew Research
Center, 2019a, 2019b). In emerging and developing economies, only 24% of people reported hav-
ing a smartphone in 2013–2014, and although the percentage increased to 42% in 2017–2018, the
majority of the populations still did not own a smartphone (Poushter et al., 2018). Use of social
media for health-related purposes is still limited, especially among older people, and there might still
be gender differences in using social media for supportive communication and online community
engagement. Health communication researchers need to explore ways to help bridge these divides
and decrease health disparities (see Chapter 29, this volume). They may consider social media as
effective channels to deliver messages targeting young people (e.g., messages on drug abuse or sexual
health) and complement social media platforms with traditional channels to communicate messages
targeting older demographics (e.g., messages on colorectal cancer screening; Prestin et al., 2015).
Meanwhile, they may consider partnering with younger adults so that the younger adults could pass
the information on to the older adults in their social networks (Prestin et al., 2015).
Health communication researchers need to be mindful of both the bright and dark sides of social
media use. Studies that help us better understand why inaccurate health information is popular in
social media and how to overcome the echo chamber effect are sorely needed. Researchers need to
work with health organizations and health professionals to pursue responsible use of social media
when disseminating health information, further investigating methods to improve accuracy and
transparency of information transmission and to provide timely and effective corrections to misin-
formation in social media (Chan et al., 2020). A recent meta-analysis of studies attempting to cor-
rect misinformation suggested that appeals to coherence were more effective than fact-checking or
appeals to credibility and that rebuttals were more effective than forewarnings (Walter & Murphy,
2018). Therefore, health communication researchers need to further examine the effectiveness of
different corrective strategies for various health contexts where individuals may have different levels
of biases and misperceptions. The role that traditional media effect theories and traditional health
communication theories play in this process also deserves further examination in the context of
social media.
Meanwhile, it is important for health communication researchers to identify effective mecha-
nisms to educate the general public and to help individuals become more critical social media
users. Critical processing of health information plays a key role in maximizing the positive effects
and minimizing the negative effects of social media. Researchers, therefore, need to investigate
innovative ways (e.g., using entertaining education or interactive gaming) to help social media users
improve social media literacy, including both commercial and peer social media literacy, to attenuate
negative effects of social media use on individuals’ health and behaviors (Tamplin et al., 2018). Edu-
cating the public on issues such as privacy and security is also essential for responsible use of social
media. Furthermore, because social media’s social and communicative function is still underutilized,
researchers need to investigate mechanisms that can increase two-way communication and reciproc-
ity to promote communication on important health topics.
Finally, health communication researchers can take advantage of the unobtrusive nature of social
media data to innovate communication research methodology (e.g., text mining, digital ethnog-
raphy) and to complement traditional social scientific measurement techniques with new metrics
enabled by social media. There is also room for more interpretive and critical-cultural research using
naturalistic data in social media. Researchers can use social media as research and education platforms
to better understand users, identify mental and physical problems, communicate important health
messages, and help users translate health discussions and health knowledge into health behaviors.
The philosopher George Santayana (1955) is credited with having said that those who cannot
remember the past are doomed to repeat it, and those words are particularly salient here. Whenever
new technologies emerge, there is a rush to adore the innovation and assume that it will solve the
world’s ills. Almost simultaneously, there is another rush to condemn the new technology as the

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devil’s handiwork. The various social media channels are an opportunity to better understand and
practice communication in general and health communication in particular. However, it is impor-
tant to recognize that most of the things we will discover about social media will be quite consist-
ent with what we already know about the mass media and face-to-face communication. The real
question is, how can we harness this technology to improve public health? That remains to be seen.

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 22
HEALTH MISINFORMATION
Xiaoli Nan, Yuan Wang, and Kathryn Thier

Reliable health information is crucial to making informed decisions about one’s health. Because
most of us are not medical experts, we turn to professionals who have the expertise for reliable
health information. Indeed, when it comes to health information sources, Americans trust doctors
or healthcare professionals the most, followed by government health agencies (Jackson et al., 2019).
However, when asked “the most recent time you looked for information about health or medical
topics, where did you go first?” more than 72% of Americans reported “the Internet” (Health Infor-
mation National Trends Survey [HINTS], 2019). Moreover, 64% of U.S. adults reported “some” or
“a lot” of trust in the Internet as a health information source (HINTS, 2018). The frequency with
which the Internet is used as a health information source combined with the level of trust people
have in this source is troubling given the prevalence of health misinformation online (Southwell &
Thorson, 2015).
Swire-Thompson and Lazer (2020) define misinformation as “information that is contrary to
the epistemic consensus of the scientific community regarding a phenomenon” (p. 434). Health
misinformation is a specific type of misinformation that contains one or more health-related claims
inconsistent with scientific consensus. Ever since the arrival of the Internet, there has been rising
concern about online health misinformation and its potential impact on Internet users (Oravec,
2000). In recent years, such concerns have intensified amid the anti-vaccine movement that aggres-
sively utilizes the Internet and social media to spread vaccine misinformation and anti-vaccine
sentiment (Kata, 2012). The 2016 U.S. presidential election, which was mired in controversies of
political misinformation and foreign interference via social media, allegedly ushered in the “post-
truth” era where even health information is being manipulated by foreign entities to stir social
discord and polarization. For example, Russian Twitter bots have amplified not only anti-vaccine
messages but also pro-vaccine content, sowing social discord on a critical public health issue (Bro-
niatowski et al., 2018).
The Internet and social media are not the only sources of health misinformation. Much health
misinformation originates from traditional media reports, which then gets amplified on the World
Wide Web. In this chapter, we provide an overview of prominent sources of health misinforma-
tion that include both online and offline sources, followed by a review of evidence concerning the
prevalence of health misinformation in diverse settings. We then describe the key characteristics of
health misinformation, in terms of both content and diffusion features, as compared to accurate or
scientific information. Finally, we review evidence concerning the impact of health misinformation

318 DOI: 10.4324/9781003043379-27

 Health Misinformation

on its receivers and the effectiveness of communication strategies in mitigating the impact of health
misinformation.

Sources of Health Misinformation

Health misinformation comes from many sources, including media, industry, government and poli-
ticians, healthcare providers themselves, and social/interpersonal groups or community networks.
Within media, the emergence of the Internet has radically changed how health misinformation is
generated and distributed, with power shifting to non-experts (Mahoney et al., 2015). Next, we
explain how health misinformation is disseminated from each source.

Media
Perhaps the most common source of health misinformation is the media. Journalistic media may
disseminate health misinformation through oversimplification, misrepresentation, and overdramati-
zation as reporters repackage science for a mass audience and adhere to the journalistic principles of
“balance” (Lewandowsky et al., 2012, p. 110; Thomas et al., 2017). For instance, the popular press
misinforms the public about nutrition by confusing correlation with causation, seizing on initial
research, and citing non-scientists, such as celebrities and fitness professionals (Ayoob et al., 2002).
By engaging in core functions such as surveillance and attracting public attention to gain advertisers,
TV reporting can overemphasize or sensationalize novel but rare diseases, such as West Nile virus,
ultimately increasing the public’s threat perception beyond the actual risk (Gollust et al., 2019).
Production and marketplace pressures, along with diminishing resources, can lead TV journalists
to oversimplify health research, as can their emphasis on short-form storytelling via stations’ social
media accounts (Gollust et al., 2019).
In covering health misinformation as news, traditional journalistic media spread falsehoods that
are in turn dispersed by Internet news and users. After former U.S. Representative Michele Bach-
man falsely proclaimed on the Today Show that the HPV vaccine causes mental retardation, an
increasing number of Google News and Twitter articles included her inaccurate statement, despite
some Twitter users correcting it (Mahoney et al., 2015). Following news reports that Italian courts
awarded compensation for alleged MMR-vaccine-induced autism, Google searches, tweets, and
Facebook posts about the false connection between vaccines and autism rose, spreading misinforma-
tion and anti-vaccination sentiment (Carrieri et al., 2019).
People encounter health misinformation online through searches, content generation, and
engagement with mobile health apps (Swire-Thompson & Lazer, 2020). Sometimes digital tools
such as online drug information compendia (Randhawa et al., 2016) and online cancer risk calcula-
tors (Levy et al., 2008) contain misinformation even though they are designed to help healthcare
providers, patients, or health information consumers. Despite positive outcomes such as patient
empowerment (Kata, 2012), the Internet allows non-experts to spread misinformation as they create
new content in online health forums or communities for people with specific diseases or health con-
cerns (e.g., Bakke, 2019). Additionally, social media can foster “digital pandemics,” the widespread
online dissemination of medically inaccurate information, including disinformation by anti-vaccine
activists who employ interaction and user-generated content to sow apprehension, ambiguity, and
misgivings (Seymour et al., 2015, p. 517).
Finally, entertainment media have been a source of health misinformation. Prime time network
TV shows and horror films, for example, convey inaccuracies and promote stereotypes about mental
illness (Goodwin, 2014). Moreover, medical TV talk shows, which blend facts and entertainment,
offer accurate advice only 30% to 50% of the time (Thomas et al., 2018).

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Industry
With a decades-long campaign to withhold information about the dangers of smoking and create
confusion about the science, the tobacco industry set the standards for industry dissemination of
health misinformation (Cappella et al., 2015). In response to legal and government sanctions, the
tobacco industry undermines plain packaging rules by replacing banned words (“mild” and “light”)
with other misleading ones (“smooth”) and choosing lighter colors for brand names to reinforce
misperceptions that “light” cigarettes are less harmful (Evans-Reeves et al., 2019). The global, indus-
trialized food industry has adapted the tobacco industry’s earlier tactics by advertising non-nutritious
food to children, promoting conflicting data about fats and sugars, and employing misleading words
such as “natural” and “light” to create health claims unsupported by science (Hindin et al., 2004).
Similarly, the limited information conveyed in direct-to-consumer pharmaceutical advertisements
of complex and nuanced topics, such as genetic testing and specialized cancer center treatment, can
lead to misperceptions (Hlubocky et al., 2020).

Government and Politicians

Exploiting vaccine hesitancy is now part of the arsenal of populist political discourse, with gov-
ernment-sponsored Russian Twitter trolls seeding debate to undermine the 2016 U.S. elections
(Broniatowski et al., 2020) and Polish right-wing politicians aligning with anti-vaccine activists as
they construct a nationalist populist narrative (Żuk et al., 2019). In the United States, politicians on
the right, including the former U.S. president Donald Trump, have spread misinformation about
oral contraceptives to attack the Affordable Care Act (Hogue et al., 2017), vaccines (Mahoney et al.,
2015), and the emergence of COVID-19 and possible treatments (Jaiswal et al., 2020).

Healthcare Providers
Providers, including doctors, nurses, dental hygienists, medical students, and pharmacists, spread
misinformation to patients in various ways. For example, they may have inadequate knowledge
(e.g., Clovis et al., 2012). They also may adhere to false beliefs prevalent in their specialty, such as
psychiatrists who discount the evidence that antidepressants create physical dependence and sig-
nificant, common withdrawal symptoms (Hengartner & Plöderl, 2018). In addition, some provid-
ers may rely on unsound clinical evidence (Ioannidis et al., 2017) or literature tainted by citation
bias, as when studies about the high prevalence of smoking among schizophrenics are over-cited
despite an average smoking prevalence in that population (Chapman et al., 2009). As with non-
professionals, practitioners also disseminate and consume misinformation via social media (Chua &
Banerjee, 2018).

Informal Groups/Community Networks

Informal networks, in-group attitudes, and rumors often serve as health misinformation sources
in communities with a history of medical mistrust (DiFonzo et al., 2012). For instance, conspiracy
theories thrive in situations of “inequality-driven mistrust” (Jaiswal et al., 2020, p. 1), such as HIV/
AIDS conspiracy narratives among some African Americans (Heller, 2015). Rumors tend to circu-
late through “trust and knowledge networks” created among ethnic or racial subgroups due to social
constraints (Heller, 2015, p. 43). Several studies document how women in developing countries
or who are low-income learn health misinformation from interpersonal rumors, including about
contraception among women in India, Nepal, and Nigeria (Diamond-Smith et al., 2012). Also,
cultural reliance on word-of-mouth and informal networks likely led to health misinformation

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among African American cancer patients (Matthews et al., 2002), MMR vaccine-hesitant Somali
Americans (Bahta & Ashkir, 2015), and Latinas with respect to sexual health (Cashman et al., 2011).

Summary
Sources of health misinformation are largely similar to general misinformation sources. The ability
of non-experts to create and spread misinformation via online user-generated content and social
media is shifting the landscape of health misinformation sources. Informal groups and community
networks, such as those derived from race, ethnic, and gender identities, can be misinformation
sources and warrant more systematic investigation, as does the interplay between these offline and
online networks.

Prevalence of Health Misinformation

We are concerned about health misinformation because we believe it is prevalent and has the
potential of reaching large audiences. So, how prevalent is health misinformation according to past
research? And in what communication settings is health misinformation more prevalent? Many
studies have examined the prevalence of health misinformation in such diverse contexts as tobacco
products (Evans-Reeves et al., 2019), cancer (Chen et al., 2018), immunization (Goodyear-Smith
et al., 2007; Thomas et al., 2017), and infectious diseases (Kouzy et al., 2020). These studies pro-
vided insights regarding the prevalence of health misinformation in interpersonal and mediated
communication settings.

Interpersonal Settings
People often rely on informal and familial word-of-mouth channels for health advice, especially
when formal sources of information, such as the medical community, are distrusted (DiFonzo et al.,
2012). Anderson et al. (2014) interviewed a diverse sample of women regarding how they commu-
nicate information about contraceptives with others in their social networks. Participants reported
that information about negative aspects of contraceptive methods, which often was incorrect, was
both more prevalent and more memorable than positive information about contraceptive methods
in their communication with friends and family members. In another study about cancer misinfor-
mation, DiFonzo et al. (2012) had participants recall a statement they heard about cancer from a
nonmedical source. Results showed that around 83% of these statements were rumors (i.e., unveri-
fied statements in circulation) and 85% of the rumors came from friends or family. These findings
suggest that health misinformation likely is quite common in interpersonal settings, especially in
communication with close social ties.
Health misinformation also occurs in patient-provider communication. In a study assessing the
prevalence of misinformation about emergency contraception in communication between pharma-
cists and adolescents, Wilkinson et al. (2012) telephoned 759 pharmacies in five U.S. cities while
posing as 17-year-old adolescents. They found that around one in five pharmacies spread misinfor-
mation regarding who can take emergency contraception, and almost half of pharmacies commu-
nicated incorrect age guidelines to callers. In another study of patients’ postpartum contraception
perceptions, Sundstrom et al. (2018) found that although participants overall demonstrated trust in
their healthcare provider’s advice, some patients also mentioned receiving conflicting advice and
misinformation regarding risks of contraception from their providers. Provider recommendations are
among the most important information patients refer to when making health decisions (Anderson
et al., 2014). Therefore, any health misinformation circulated in patient-provider communication,
regardless of prevalence, raises serious concerns.

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Mediated Settings
Although misinformation does occur and can be fairly prevalent in non-mediated, interpersonal
communication, misinformation is often considered a mass communication phenomenon (South-
well & Thorson, 2015). Fear of misinformation in mass media likely stems from the perceived ability
of the mass media to quickly and widely spread misinformation. In general, research has shown misin-
formation to be prevalent in the mass media, including traditional media and especially online media.
Journalists for traditional media outlets perform a gatekeeping function, yet research has found
that misinformation is still a serious problem in traditional media. In a study concerning the preva-
lence of vaccine misinformation in media reports, Goodyear-Smith et al. (2007) analyzed the con-
tent of 400 national publications in 2001 and in 2003 throughout New Zealand. They found that
17% of the articles contained anti-immunization messages, which were seldom backed up by scien-
tific evidence. In another study examining how news and public affairs articles reported on the false
statement “HPV vaccine causes mental retardation,” Thomas et al. (2017) found that about half of
these articles included the statement without explicitly stating the claim was false.
The increasing popularity of social media as a venue for seeking and sharing health information
amplifies the prevalence of health misinformation on social media (Southwell & Thorson, 2015). In
a study of medical misinformation pertaining to the COVID-19 pandemic on Twitter, Kouzy et al.
(2020) examined 673 tweets related to the virus; they found that 153 tweets (24.8%) included mis-
information and 107 tweets (17.4%) included unverifiable information related to the pandemic. In
another study of psoriasis-related misinformation on YouTube, Qi et al. (2016) analyzed the content
of 47 videos and found that 21% of these videos were misleading, containing inaccurate or unproven
information about psoriasis based on current evidence. Health misinformation was also found to be
prevalent on other social media platforms, including Facebook (Jamison et al., 2020), WhatsApp
(Al Khaja et al., 2018), and Weibo (Chen et al., 2018). These findings highlight the importance of
curbing the dissemination of health misinformation on social media.

Summary
A wealth of studies has examined the prevalence of health misinformation in various communica-
tion settings. Although the specific proportion of misinformation varies across health contexts and
communication settings, health misinformation overall appears to be quite common in both inter-
personal and mediated communication.

Characteristics of Health Misinformation

Although evidence is growing on the prevalence of health misinformation, less is known about
the characteristics of health misinformation. Examining how health misinformation differs from
scientific information in terms of content characteristics (Moran et al., 2016; Zollo et al., 2015) and
diffusion patterns (Chen et al., 2018; Kouzy et al., 2020) is an emerging trend.

Content Characteristics
How are the content characteristics of health misinformation different from those of typical scien-
tific information? Current research suggests differences in at least two areas—sentiment and evi-
dence. Moreover, health misinformation is reliant on an anti-science rhetoric and is often misleading
rather than ostensibly false.
In terms of sentiment, health misinformation tends to be more negative in tone than scientific
messages. In a study examining word usage and sentiment differences between pro- and anti-vaccine

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headlines of online articles, Xu and Guo (2018) found that anti-vaccine headlines were 1.3 times
more likely to use words related to negative sentiments, including fear, anger, and sadness, than pro-
vaccine headlines. In another study that analyzed the sentiments of a collection of conspiracy posts
and scientific news posts on Facebook, Zollo et al. (2015) drew a similar conclusion; they found that
54% of conspiracy posts used negative sentiment, double the amount in scientific ones.
Regarding the evidence underlying the claims of the message, health misinformation is often
based on anecdotes and personal stories, whereas scientific messages are usually backed up by facts
and statistics (Teoh, 2019). For instance, in a content analysis of anti-vaccine websites, Moran et al.
(2016) found that 66.9% of these websites used pseudo-scientific evidence (e.g., confusing correla-
tion for causation) and 30.6% of them used anecdotal evidence to support their claims. Instead of
emphasizing the scientific evidence, these websites promoted anti-vaccine statements by connect-
ing anti-vaccine behavior to various values, such as choice, individuality, and freedom. In another
study of vaccine misinformation, Grant et al. (2015) analyzed the content of two pro-vaccine and
two vaccine-skeptical websites; they found that pro-vaccine websites concentrated on conveying
evidence-based scientific research about vaccines, whereas vaccine-skeptical websites focused more
on creating communities of people affected by vaccine-related practices.
With regard to rhetorical tactics, studies show that health misinformation often uses anti-science
narratives. In a study of vaccine misinformation on social media, Steffens et al. (2019) found that
the misinformation spread by anti-vaccine activists was characterized by resistance to mainstream
expertise and skepticism of scientific evidence. In another study of anti-vaccination movements,
Kata (2012) identified three tactics that anti-vaccine activists used to argue against vaccination: skew-
ing science, shifting hypotheses, and attacking critics. The author concluded that these tactics make
vaccine misinformation look convincing despite lacking scientific support.
Moreover, misinformation is not always easy to discern. Past research has tended to focus on
misinformation that is unequivocally false, whereas real-world misinformation can be misleading
in subtle ways, with misdirection resulting solely from hints, framing, word choices, and relative
placement of various pieces of information (Ecker et al., 2014). In a content analysis of drug-related
messages on social media, Al Khaja et al. (2018) found that potentially misleading claims (i.e., claims
that omit important facts about the drug, use poor-quality clinical evidence as scientific support, or
exaggerate the clinical importance of poor-quality evidence) comprised the majority of the messages
(59.1%), more than twice the amount of false claims (27.3%) that directly contradict evidence or lack
any supporting evidence. In sum, the most prominent types of misinformation in real-life settings
might be misleading claims rather than explicit falsehoods.

Diffusion Patterns
Do lies travel faster than truths, as people have lamented? It sure does seem so in a study conducted
by Vosoughi et al. (2018), who analyzed 126,000 news stories circulated on Twitter from 2006 to
2017 and found that misinformation spread significantly farther, faster, deeper, and more broadly
than did accurate information. The authors posited that misinformation spread more widely than
facts because it elicited more high-arousal emotions such as disgust, fear, and surprise, which moti-
vated the recipients to share the misinformation. In a specific health context, Xu and Guo (2018)
found that anti-vaccine information was shared, commented on, and liked more than pro-vaccine
information.
Other studies have provided contrary evidence, however. In a recent analysis of medical mis-
information in the COVID-19 pandemic on Twitter, Kouzy et al. (2020) found that neither false
claims nor unverifiable information received a significantly different number of likes and retweets
than scientific claims, suggesting that misinformation is as likely to spread as truthful information.
In a network analysis of cancer-related misinformation, Chen et al. (2018) analyzed the diffusion

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pattern of cancer-related misinformation on Weibo, a popular Chinese social media platform similar
to Twitter. They found that although several false tweets had been extremely popular and received a
large number of retweets, most of the false tweets received fewer retweets and comments than truth-
ful tweets; in addition, truthful tweets showed better diffusion performance in terms of range and
structural virality of retweet networks. These findings suggest that although a few pieces of misinfor-
mation could be extremely viral, scientific messages may have a better diffusion performance overall.

Summary
Health misinformation is characterized by negative sentiments, anecdotal evidence, and anti-science
narratives. It is often subtly misleading rather than explicitly false. There are mixed findings regard-
ing whether health misinformation diffuses more broadly than scientific messages. We need more
studies, in more diverse health and media platform contexts, to further evaluate the diffusion char-
acteristics of misinformation versus accurate information.

Impact of Health Misinformation

Although misinformation has always been a significant part of human communication, the unprec-
edented proliferation of misinformation in general and health misinformation in particular on social
media and other forms of online and traditional media in recent years has led to grave concerns
among conscientious citizens, scientists, and government officials (Chou et al., 2018; Southwell &
Thorson, 2015). The concerns rest on the assumption that misinformation has the potential to
significantly impact how people think, feel, and behave with regard to the issues tainted with misin-
formation, undermining the integrity of democracy and jeopardizing public health. In the political
arena, for example, it is believed that online misinformation propagated by Russian trolls influenced
the outcome of the 2016 American presidential election (Jamieson, 2018). In the public health
domain, recent measles outbreaks in the United States have been attributed to misinformation about
vaccine safety (Centers for Disease Control and Prevention, 2019).
Despite the high level of concern about online misinformation and its potential effects, empirical
evidence regarding the impact of misinformation remains limited. In a study of fake news sharing by
registered voters on Twitter during the 2016 presidential election, Grinberg et al. (2019) found that
engagement with fake news sources was extremely concentrated; only 1% of individuals accounted
for 80% of fake news source exposures, and 0.1% accounted for nearly 80% of fake news sources
shared. Tracking visits to fake news websites, Guess et al. (2020a) showed that these sites made up
a small share of people’s information diets on average and were largely consumed by a subset of
Americans with strong preferences for pro-attitudinal information. These findings suggest that fake
news or political misinformation may have had less impact on the election outcome than previously
assumed. On the basis of emerging correlational and experimental evidence concerning the effects
of misinformation exposure in political contexts, Guess et al. (2020b) concluded that fake news may
have limited effects beyond increasing beliefs in false claims and that many claims about the effects
of exposure to false news may be overstated.
What about health misinformation? To what extent are people’s health beliefs, attitudes, and
even their behaviors influenced by health misinformation? Given the widespread concern about the
potential detrimental impact of health misinformation (Swire-Thompson & Lazer, 2020), there is
surprisingly limited research directly examining such impact, and the evidence that is available so
far appears to be mixed. In a longitudinal study examining the lagged associations between young
adults’ exposure to misinformation about cancer-related risks (e.g., indoor tanning, e-cigarette use,
reuse of plastic bottles, and use of artificial sweetener) and related beliefs, intentions, and behaviors,
Tan et al. (2015) found that exposure to misinformation predicted misperceptions for only one of

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the four contexts examined; people who reported more exposure to the false statement that reusing
plastic bottles can cause cancer were more likely to believe it is true. Believing in this false statement,
however, was inconsequential to reported intentions or behaviors.
In the context of vaccination, Smith et al. (2008) found that news media coverage of the MMR-
autism controversy following the publication of the 1998 Lancet article linking MMR vaccination
to childhood autism bore no relationship with the rate of selective MMR nonreceipt (cases where
children received all childhood immunizations except MMR) in the United States. This finding
suggests that news media coverage of vaccine misinformation may have limited influence on parental
decisions to vaccinate their children, but it cannot rule out the potential impact of vaccine misinfor-
mation distributed in other media platforms such as social media. Edelstein et al. (2020) examined
childhood vaccine coverage in the United Kingdom and anti-vaccination sentiment on Twitter.
They found that vaccination coverage among children had been in decline since 2012–2013 even
though there was a decrease in the proportion of anti-vaccination messages on Twitter. These find-
ings show that online anti-vaccination messages might have limited impact on vaccination behavior.
The authors warned that exaggerating the potential impact of the anti-vaccination movement may
bring more attention to anti-vaccination messages that health professionals wish parents to avoid in
the first place.
The impact of health misinformation can be more convincingly demonstrated in experimental
studies where causal inferences can be made. In an experimental study of tobacco misinformation,
for example, Gratale et al. (2019) exposed current and former smokers to cigarette ads that con-
tained misleading claims (e.g., “100% additive free and U.S. grown—no chemicals, flavourings or
preservatives,” p. e44). Participants exposed to an ad with misleading words (e.g., “additive free” or
“no chemical,” p. e44) reported stronger misperceptions about the tobacco product and, among cur-
rent smokers, greater intention to use it than participants who saw a similar ad with the misleading
words removed. These findings suggest that misinformation can lead to misperception and change
in behavioral intention.
In another experimental investigation, Lyons et al. (2019) had participants read information about
the Zika virus with or without a conspiracy theory (i.e., the Zika epidemic was the result of the
release of genetically modified mosquitoes by a pharmaceutical company that would profit from
the need for a Zika vaccine). They found that exposure to the information containing a conspiracy
theory significantly increased participants’ conspiracy beliefs. They also tested the impact of the
explicitness of conspiracy cues (i.e., whether the conspiracy theory was explicitly stated or merely
suggested) and found that misinformation with explicit conspiracy cues resulted in greater con-
spiracy beliefs. Yet, misinformation did not have a tangible impact on behavioral intentions (i.e.,
intentions to uptake the Zika vaccine).

Summary
Overall, health misinformation significantly influences health beliefs, often leading to mispercep-
tions. Evidence concerning the influence of exposure to health misinformation on other outcome
variables such as attitudes, behavioral intentions, or behaviors is limited, and the findings tend to be
mixed.

Mitigation of the Impact of Health Misinformation

In the past few years, we have seen a rapid expansion of research on mitigating the impact of
misinformation in health and other contexts, fueled by the pressing concern about the potential
negative impact of misinformation. Numerous studies emerged that explored the efficacy of cor-
rective messages in reducing misperceptions in general (for reviews see Walter & Murphy, 2018;

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Walter & Tukachinsky, 2020) and health misperceptions in particular (Bode & Vraga, 2018; Lee
et al., 2020). Other studies have examined ways to build resistance to misinformation through pre-
interventions such as forewarning (Cook et al., 2017) and innovative education (Roozenbeek &
van der Linden, 2019).

Misperception Correction
Given the prevalence of vaccine misinformation in the social media space, several studies examined
the effectiveness of corrective messages in changing vaccine misperceptions. For example, Nyhan
et al. (2014) studied a national sample of parents and exposed them randomly to one of several
pro-MMR vaccine messages or no information at all. Among the pro-MMR vaccine messages was
a corrective message that presented scientific evidence debunking the vaccine/autism link. The
authors found that the corrective message successfully reduced belief in the vaccine/autism link
but did not influence overall concern about the side effects of the MMR vaccine. The corrective
message did not change parents’ intention to give a future child the MMR vaccine. Among parents
who held the least favorable initial attitudes toward vaccines, the corrective message actually back-
fired by decreasing these parents’ intentions to vaccinate their children. The backfire or boomerang
effect was similarly observed in a study on flu vaccination, where participants with high levels of
concern about vaccine side effects decreased their intent to get the flu vaccine after viewing a mes-
sage debunking a flu vaccine myth (that the flu vaccine gives one the flu; Nyhan & Reifler, 2015).
Although the backfire effects of debunking messages on vaccination intentions are disconcerting,
future research is needed to examine the extent of this phenomenon across different health behav-
iors. A recent study examining backfire effects of debunking messages on belief change in various
contexts of political issues suggests that the backfire effect might be an exception rather than a rule
(Wood & Porter, 2019).
Other health contexts that have received considerable attention in terms of misinformation
debunking and misperception correction include tobacco products (Sangalang et al., 2019) and
infectious diseases such as the Zika virus (Bode & Vraga, 2018; Lyons et al., 2019). In addition to
examining the general effects of corrective messages, studies have assessed the effects of corrective
messages as a function of message type (Sangalang et al., 2019), source of the message (Pluviano
et al., 2020; Vraga & Bode, 2017), and audience characteristics (Nyhan et al., 2014).
In terms of message type, Vraga et al. (2019), for example, compared the efficacy of logic-
based versus humor-based corrective messages in changing misperceptions about three science or
political topics (climate change, gun control, and HPV vaccination). The authors found that logic-
based corrective messages were consistently effective across topics, whereas humor-based correc-
tive messages were effective only in correcting misperceptions about HPV vaccination. For HPV
vaccination, logic-based messages also performed better than humor-based messages in correcting
misperceptions.
In terms of message source, Vraga and Bode (2017) found that corrective messages delivered by
a known credible source (e.g., Centers for Disease Control and Prevention) were more effective in
reducing misperceptions about the Zika virus than those posted by an unknown user. Pluviano et al.
(2020) further demonstrated that when it comes to correcting health misperceptions (e.g., belief in a
rumored link between a vaccine and ADHD), source trustworthiness is more important than source
expertise; sources high (vs. low) in trustworthiness were found to be more effective in reducing the
use of misinformation in inferences, whereas source expertise did not make a difference.
Perhaps the most common audience characteristic researched in health misperception correction
studies is individuals’ initial belief in misinformation. Because individuals tend to be more accept-
ing of cognitively consistent information and more skeptical of inconsistent information—a phe-
nomenon called motivated reasoning, in which motivation (to reach a particular conclusion) affects

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reasoning through reliance on a biased set of cognitive processes (Kunda, 1990)—there is reason
to believe that corrective messages are less effective the more people believe in the misinformation
in the first place. Empirical evidence tends to be mixed, however (Lewandowsky et al., 2012). In
health domains, corrective messages either have similar effects on beliefs for people high and low in
initial misperceptions (Nyhan et al., 2014; Nyhan & Reifler, 2015) or tend to work more effectively
for those high in initial misperceptions (Vraga & Bode, 2017). In the latter case, the lack of effects
among those low in initial misperceptions might be due to a floor effect, where the ability of cor-
rective messages to further reduce misperceptions could be diminished.

Pre-Interventions
Through a meta-analysis, Walter and Murphy (2018) found that, in general, forewarning is not as
effective as debunking or misperception correction in mitigating the impact of misinformation.
However, studies show that forewarning could be a useful complementary strategy. In the context of
climate change, for instance, Cook et al. (2017) found that preemptively explaining the potentially
misleading effect of false-balance media coverage or conveying scientific consensus was effective in
neutralizing the negative influence of misinformation on climate change perceptions. Further, inno-
vative educational tools such as a “fake news game” confer psychological resistance against online
misinformation (Roozenbeek & van der Linden, 2019).

Summary
In sum, important work is being carried out to evaluate the efficacy of corrective messages and pre-
interventions in combatting health misinformation. The good news is that corrective messages tend
to work well to reduce health misperceptions, at least in the short term. It is less known whether the
effects might be long lasting given the lack of longitudinal studies. We also know that the efficacy
of corrective messages may vary as a function of the type of sources, formats, and recipients of the
messages. Further, messages correcting vaccine misperceptions seem to have a worrisome backfire
effect on vaccine-hesitant parents’ intention to vaccinate their children. More research is needed
to assess potential backfire effects in other health contexts. Finally, pre-interventions are promising
strategies for mitigating the impact of health misinformation, although research on pre-interventions
in health contexts is sparse.

General Conclusions
Health misinformation is a serious threat to public health and warrants systematic research into its
sources, prevalence, characteristics, impact, and mitigation. Although current research on health
misinformation is still largely descriptive in nature, recent work has begun to use experimental
methods to document the impact and mitigation of health misinformation. Overall, researchers have
taken a predominantly empirical, positivistic approach to investigating the various facets of health
misinformation. Future research could incorporate more interpretive, critical-cultural perspectives
to bring about a more complete understanding of a phenomenon as complex as misinformation in
health contexts.
A few general conclusions can be drawn based on the current landscape of the health misinfor-
mation literature. First, health misinformation comes from many sources, including personal social
networks, industries, government and politicians, and even providers themselves. Perhaps the most
common source, however, is the media. Health misinformation reported through traditional jour-
nalistic media is amplified by online and social media, where health misinformation increasingly is
disseminated through user-generated content.

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Second, health misinformation is prevalent in our information environment, both in interper-

sonal and mediated settings. The overall prevalence of health misinformation presents a significant
challenge not only for consumers to obtain accurate and useful health information but also for
providers in their interaction with misinformed patients. Third, health misinformation is charac-
terized by negative sentiments, anecdotal evidence, and anti-science narratives. It is often subtly
misleading rather than explicitly false, making it challenging to detect or counteract. Although
there is concern that misinformation may reach more people than accurate or scientific informa-
tion, there is limited evidence that health misinformation diffuses more broadly than scientific
messages.
Finally, although health misinformation has been shown to result in health misperceptions, evi-
dence concerning the influence of exposure to health misinformation on other outcome variables
such as attitudes, behavioral intentions, or behaviors is limited and mixed. Efforts to mitigate the
impact of health misinformation through corrective messages are well under way. Corrective mes-
sages tend to work well to reduce health misperceptions, at least in the short term. Their long-term
effects and impact on behaviors, however, are less understood.

Directions for Future Research

Future research should continue to monitor the sources of health misinformation. User-generated
content in online and social media is becoming a common and worrisome source of health mis-
information. Such content can originate from individuals or organized groups (e.g., anti-vaccine
activists). As access to digital and mobile information sources increases, more research is needed to
investigate how online users create and disseminate health misinformation, including the techniques
used to increase influence and reach. Another area that needs more attention is misleading advertis-
ing and marketing by the food, alcohol, and tobacco industries. The “next frontier on misinforma-
tion and smoking” is the recent emergence of vaping and e-cigarette use, with accurate information
hampered by conflicting views on safety, inconsistent regulations, and questionable YouTube videos
and social media ads (Krishna & Thompson, 2021, p. 8).
More research is needed to understand the exposure to and consumption of health misinforma-
tion. What types of individuals are more likely to be exposed to and consume health misinforma-
tion and therefore are more vulnerable to its detrimental impact? Older adults or people with lower
media literacy, for example, could consume a larger quantity of health misinformation or be targeted
disproportionally with misleading health information (e.g., online direct-to-consumer pharmaceuti-
cal advertising). Identifying vulnerable groups will inform future interventions to reduce exposure
and consumption of health misinformation.
Future research should continue to investigate the content and diffusion characteristics of health
misinformation as qualified by other aspects of the misinformation. For instance, although nega-
tive sentiments are often used in health misinformation (Xu & Guo, 2018; Zollo et al., 2015), in
certain health contexts (e.g., e-cigarettes; Martinez et al., 2018) positive sentiments tend to be more
common. Additionally, content characteristics might differ by source. For example, activists often
use personal stories and anti-science narratives to support their false claims (Steffens et al., 2019),
whereas industries are more likely to present misinformation in a subtle way, often by omitting
important facts or overstating the efficacy of products (Al Khaja et al., 2018). Furthermore, a fruitful
avenue for future research is to examine the linkage between misinformation’s content/source and
diffusion characteristics. Do certain features of misinformation make it more viral? Does misinfor-
mation from certain sources spread more widely than that from other sources? Studies have found
that health messages that presented controversial, emotionally evocative, and familiar content are
more likely to go viral (Kim, 2015); however, it is unclear whether the same applies to the virality
of health misinformation.

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Finally, an important direction for future research is to document the impact of health misinfor-
mation. So far, empirical evidence shows health misinformation influences health beliefs and mis-
perceptions, but its impact on attitudinal and behavioral outcomes is not well understood. To what
extent does health misinformation lead to actual harm beyond simply implanting bad ideas? It seems
intuitive to assume bad ideas or beliefs will eventually lead to harmful behaviors. Until more empiri-
cal evidence supports such a link, however, it remains inconclusive. On the other hand, there is a
growing interest in evaluating the efficacy of corrective messages in mitigating the impact of health
misinformation. Research suggests that the efficacy of corrective messages varies widely depending
on the characteristics of such messages (e.g., pre-bunking vs. debunking, fact checking vs. alterna-
tive explanation). More research is needed to identify factors that strengthen or weaken the effects
of corrective messages. Finally, just as there is no robust evidence that health misinformation leads to
harmful behavior, efforts to mitigate the impact of health misinformation have not been empirically
linked to reduction in harmful behavior. Clearly more work is needed to investigate the relation-
ships between exposure to health misinformation or corrective messages and behavioral outcomes.

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 SECTION VI

Campaigns, Interventions, and

Technology Applications
 23
PUBLIC HEALTH
COMMUNICATION CAMPAIGNS
Kami J. Silk, Tara L. Smith, Charles T. Salmon, Brandon D. H. Thomas,
and Thanomwong Poorisat

“Mask up America.” “Don’t go viral.” “Face it. Masks fight COVID-19.” These were the themes of
campaigns organized by the states of New York, New Hampshire, and Tennessee, respectively, to
educate the public about life-saving health protocols during the COVID-19 pandemic. It is unclear
what type of formative research went into the message creation and what measures were put in
place to assess their effectiveness, but it is clear that these public health messages were necessary to
influence the behavioral outcome of wearing masks to reduce risk of disease exposure and spread.
Health communication researchers engaging in COVID-19 media exposure survey research might
be able to capture some of the effects, but a planned evaluation of the different campaigns would
help to determine whether individuals were exposed to “mask” or “social distancing” message recom-
mendations, where or how they were exposed to the recommendations (e.g., social media, television,
radio, billboards, etc.), and how they responded to the risk reduction messages (e.g., changed attitude,
intention, or behavior). Beyond COVID-19 campaigns, which provide a global illustration of the
importance of health messaging for the public good, there are literally thousands of communication
campaigns addressing an enormous range of health and environmental issues for different audiences
at local, regional, national, and global levels.
In their comprehensive review of communication campaigns, Rogers and Storey (1987) extracted
four essential elements across definitions that remain true decades later. Essential elements include
that a campaign (a) is intended to generate outcomes or effects, (b) in a relatively large number
of individuals, (c) usually within a specified period of time, and (d) through an organized set of
communicative activities. Campaigns have a long, well-established, and respected heritage as an
instrument for achieving social change (Paisley & Atkin, 2013; World Health Organization, 2009)
and as an apparatus for promoting public health (Hornik, 2002; Salmon & Poorisat, 2020). Health
campaign research and coursework often follow a social scientific process for campaign develop-
ment, implementation, and evaluation, but other approaches exist and even challenge this approach.
For example, Dutta-Bergman (2005) discussed common theoretical approaches to health commu-
nication campaigns and then made the case for campaign theorizing and decision-making so that
marginalized groups remain central at all times in the campaign process. Dutta and de Souza (2008)
also provided an excellent overview and exemplars of the critical-cultural approach to health com-
munication campaigns, illustrating that reflexivity is necessary as one considers the roles of structure,
locus of responsibility, knowledge politics, culture, and media in health communication campaigns.
In this chapter, we discuss the essential components of health communication campaigns from a

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 Kami J. Silk et al.

social scientific perspective, including formative research, persuasive message strategies, channel and
source selection, dissemination decisions, and evaluation of effects.

Approaching Campaign Design

Keeping pace with constantly changing content platforms, media consumption habits, and health
behaviors in a global world shaped by technological disruption has become the “new normal”
for communication strategists, health communication practitioners, and researchers charged with
designing public health campaigns. Keeping pace requires a nimble orientation paired with a fun-
damental understanding of communication theory so that informed decisions are made about
audience assessment, message content, and evaluation strategies. High-quality campaigns involve a
systematic approach that requires campaign planners and stakeholders to perform a thorough situ-
ational analysis, develop a pragmatic strategic plan, and create and place messages in accordance with
principles of effective media campaign and social marketing practices (O’Sullivan et al., 2003). To
maximize campaign effectiveness and reduce potential negative consequences, it is necessary to base
campaign decisions on formative research. This type of pre-production research involves gathering
data for audience research, concept development, message testing, and identifying optimal channels
(Atkin & Freimuth, 2013).
The first step for planning is to conduct a conceptual analysis of the situation to understand the
behavioral aspects of the health problem and to determine which actions should be performed by
which people in order to improve health outcomes (O’Sullivan et al., 2003). The campaign team
needs to specify focal segments of the population whose health-related practices are to be changed and
the bottom-line focal behaviors the campaign ultimately seeks to influence (Atkin & Rice, 2013). The
next step is to trace backwards from the focal behaviors to identify the proximate and distal deter-
minants and then create models of the pathways of influence via attitudes, beliefs, knowledge, social
influences, and environmental forces. For example, campaign strategists may decide that females of
reproductive age are a primary focal segment because of the need to reduce neural tube defects in
newborns, and they might identify that these females need to increase their daily folic acid intake to
prevent such defects, even if they are not trying to get pregnant.
The next step is to assess the model from a communicative perspective, specifying intended audi-
ences and intended responses that can be directly influenced by campaign messages. The communication
campaign can then be designed to influence the most promising pathways, and measurable campaign
objectives can then be created to inform further planning, implementation, and later evaluation of
effects. For example, to get women of reproductive age to take folic acid, researchers would prior-
itize them as the intended audience, and then they would create objectives and campaign messages
that promote the ease and attractiveness of taking a daily multivitamin that has the medically recom-
mended amount of folic acid to reduce neural tube defects (Lindsey et al., 2009). A comprehensive
plan is necessary so that strategic decisions can be made about different campaign components.
A practical consideration is the allocation of resources for the campaign, and strategists are faced
with a range of issues to consider. Should the campaign seek to change fundamental behaviors or
chip away at more readily altered behaviors? Who should be prioritized and targeted? Should the
most resistant or most receptive audience segments be the focus of the campaign? What proportion
of resources should be devoted to direct and indirect pathways of influence on the focal segment?
What is the optimum combination of awareness messages, instructional messages, and persuasive
messages? How many messages should attack the competition (the unhealthy behavior), and how
many should promote the healthy alternative? Should campaign messages be scheduled in concen-
trated bursts or spread out over a lengthy period of time?
Formative research can help answer these questions and resolve differences of opinions among
campaign stakeholders, such as funders, health experts, communication strategists, and ethicists. For

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example, feedback from audience research can reveal whether the tone of a message is too righteous,
whether a recommendation is too extreme, whether a message is culturally offensive, or whether the
execution of a message is too self-indulgent (e.g., letting creativity and style overwhelm substantive
content as with “Meth. We’re on it.”; Zaveri, 2019). In particular, research can help bridge the gap
between health experts who differ substantially from their target audiences in knowledge, values,
priorities, and level of involvement.
As message concepts are designed and refined, qualitative reactions to message concepts should
be assessed through interviews or focus group testing (Pace et al., 2016), and quantitative ratings
should be assessed in message-testing labs or online experimental testing (Lee, 2018). Pretest feed-
back prior to final production and dissemination of campaign messages is particularly helpful in
assessing whether the audience regards the content and style as informative, believable, motivating,
convincing, useful, on target, and enjoyable rather than too preachy, disturbing, confusing, irritating,
or dull. Focus group approaches for testing message concepts are common and useful because they
are an accessible method for priority audiences to provide in-depth feedback about potential mes-
sage concepts (Stewart & Shamdasani, 2017). For example, the U.S. Centers for Disease Control and
Prevention (CDC) have used focus groups extensively for their “Screen for Life: National Colorectal
Cancer Action Campaign.” Data from more than 225 focus groups with older men and women of
diverse ethnic/racial backgrounds have been collected in dozens of U.S. cities since 1999 (CDC,
2020b). This formative research with intended target audiences helped in understanding audience
perceptions and behavior related to colorectal cancer and their reactions to campaign messages.
Campaign strategists may want to consider how to apply the PESO media model (paid, earned,
shared, owned) to selection of tactics and messages in order to effectively engage the intended target
audience (Robinson, 2016), particularly as awareness must be raised before persuasion occurs. For
example, if the audience has low levels of awareness, the mix of media channels used in a campaign
may differ vastly from channels used to persuade the audience. Will paid media, such as social media
and mobile ads, TV and print ads, direct mail, and search engine and email marketing, be more
effective in the early stages of a campaign? Which earned media tactics, such as media and blogger
relations or partnerships, could help provide credibility on a complex issue? Will shared media activi-
ties, such as influencer engagement and organic social media posts, have enough audience reach?
Which owned media, such as content marketing, webinars, podcasts, white papers, social media
posts, user-generated content, and mobile apps, might be feasible for the organization to develop?
Strong formative research at the planning stage informs these questions.
Strategists must anticipate audience reactions to campaign messages, and they should not under-
estimate what it takes to get audience members to respond at all. In responding to campaign stimuli,
individuals proceed through the basic stages of exposure and processing before campaign effects can be
achieved at the learning, yielding, and action levels (McGuire, 2013). Exposure includes both the initial
reception and degree of attention to the campaign messages, which can be amplified by subsequent
campaign-instigated seeking of further information or sensitization to other relevant media messages
that are encountered. Processing encompasses mental comprehension, interpretive perceptions, pro and
con arguments, cognitive connections, and emotional reactions produced by the campaign message
along with subsequent interpretation of other relevant stimuli (e.g., resistance to counter-messages).
Audience predispositions play a crucial role in determining responses to campaign messages.

Intended Audiences
A public health campaign that relies heavily on traditional media might subdivide the population
by age, sex, ethnicity, readiness to change, susceptibility, self-efficacy, values, personality character-
istics, social context, or media usage variables (Rodgers et al., 2009). Each of these dimensions has
multiple levels that could ultimately create thousands of potential subgroups that might be specially

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targeted. For example, the CDC’s national “Physical Activity. The Arthritis Pain Reliever” cam-
paign encourages a subgroup of Spanish-speaking persons with arthritis to exercise as a means of
pain management through its “Buenos días, artritis” campaign messages (CDC, 2020a). There are
two major strategic advantages of segmenting groups. First, message efficiency can be maximized
if audience segments are prioritized based on who is most in need of change and most receptive to
influence. Second, effectiveness can be increased if message content, form, and style are targeted
to the predispositions and abilities of the distinct subgroups (Atkin & Freimuth, 2013). Defining
and segmenting audiences based on psychographics, demographics, geographics, and other relevant
theoretical constructs and variables increases campaign strategists’ ability to target messages to the
needs of the intended primary and secondary audiences (see Slater, 1996, for a review and critique
of audience segmentation strategies). Importantly, segmentation based on digital behavior has grown
significantly due to the ongoing use of social media for campaign messages and the reach and fre-
quency of exposure it provides (Evans et al., 2019).
Campaign strategists can choose to collect background data about audience predispositions, chan-
nel usage, and other necessary information, or they may choose to use available data collected via
standard inventories of demographic and psychographic variables for use in campaign development.
For example, the Health Information and National Trends Survey (HINTS) provides free access to
nationally representative data from U.S. citizens. The survey routinely tracks health information pat-
terns, cancer risk perceptions, channel usage, and demographic information (National Cancer Insti-
tute, 2020). Research programs such as HINTS help campaign strategists segment their audiences
across relevant variables so that messages can be tailored to audience characteristics. Although the
HINTS dataset supports a strong targeting approach, technology has advanced so significantly that
there are opportunities to maximize individual-level tailoring for health behavior change purposes.
Kreuter et al. (2013) provide a compelling case and approach for using technology to customize
messages at the individual level. Additionally, the passive data that computer users leave behind as
they navigate the Internet are collected relentlessly and can be used to understand individual prefer-
ences for message tailoring. Many data mining tools are available (e.g., Tweet Binder, MonkeyLearn,
Google Alert, and Mentionlytics) to access users’ social media data. For social listening purposes,
these tools can be used to gather and analyze online public comments by, for example, sorting them
into positive, negative, or neutral sentiments. Unique digital footprints of users’ identities, sites fre-
quently visited, postings to social media, interests, and other personal and media usage data offer a
wealth of information for campaign strategists interested in placing tailored health messages online
(see Chapters 21, 25, 26, and 37, this volume, for further information on social media, technology
interventions, and analytics).
Three basic types of audiences can be targeted in health campaigns. First, messages may be aimed
directly to the focal segments whose behavior is to be changed; second, the campaign might target
individuals who are in a position to influence the focal segments; and third, messages might focus on
decision makers who can shape policy that can alter the environments within which health decisions
occur. For example, campaigners might target adolescents directly in an anti-vaping campaign warn-
ing of risks, educate parents on the rising numbers of teens who vape to increase parental awareness,
and/or focus on legislators to increase funding for tobacco-related education. The nature of the
health problem dictates the broad parameters of the focal audience(s) to be influenced. Campaigns
often focus on receptive or favorably disposed audiences because they are ready to be influenced
(Prochaska & DiClemente, 1983), which will increase the likelihood the campaign will achieve
some impact. A less receptive but important target audience is composed of “at risk” people who
might try an unhealthy behavior in the near future—for example, teenagers who might experiment
with flavored e-cigarettes. On the other hand, those committed to unhealthy practices are not read-
ily influenced by campaigns that target them directly (Webhe et al., 2017). So, a heavy investment
of resources to get adult smokers to quit smoking immediately is likely to yield a marginal payoff.

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Campaign strategists also need to consider other demographic, social, and psychological-based sub-
groups such as high- and low-income groups or high and low sensation seekers. Influencing these
varied population segments requires a complex mix of narrowly customized messages and broadly
applicable, multi-targeted messages that use diverse appeals sensitive to the needs of subgroups.

Intended Responses
Campaigns should be designed with measurable objectives that define an intended response by
prioritized audience members. In health communication campaigns, the focal behavior is usually
a specific behavioral practice or discrete action, such as “get 150 minutes per week of moderate-
intensity physical activity” or “wear a seatbelt when you drive.” The two fundamental approaches for
campaigns are to promote healthy behavior (e.g., exercise more, wear sunscreen, get enough sleep)
or to reduce or prevent unhealthy behavior (e.g., sugar-sweetened beverage consumption, tobacco
use, indoor tanning). Supporting the regulatory focus theory (Higgins, 1997), studies have shown
that a promotion-focused frame works better for audiences concerned with improving their health,
whereas a prevention-focused frame works better for audiences concerned about avoiding disease
(Keller, 2006; Latimer et al., 2008).
There are numerous intermediate responses that might be targeted, such as awareness, knowledge,
salience priorities, beliefs, expectancies, values, and attitudes, to help facilitate behavior change.
Communication responses on social media, such as the number of comments, mentions, shares, and
likes, have also been included as intended responses (Shi et al., 2018). For policy makers and other
decision makers, responses might be to prioritize and initiate policy discussions, formulate new poli-
cies, or increase awareness to adopt or comply with laws or regulations (Bou-Karroum et al., 2017).
Health campaigners typically attack the competition by threatening dire consequences for per-
forming the proscribed behavior. As an alternative, campaigns can present a balanced message of the
short-term challenges and long-term advantages to selecting healthier lifestyle choices. For example,
the Truth Initiative’s “This is Quitting” anti-vaping campaign includes a free text message–based
program where users share text and video messages that “show the real side of quitting, both the
good and the bad, to help young people feel motivated, inspired and supported throughout their
quitting process” (This is Quitting, n.d.). The campaign also partnered with social media influencers
on the video-sharing social network service TikTok to create videos featuring the hashtag #Thisis-
Quitting (Ducharme, 2020). Although threats can be effective if handled skillfully, a heavy reliance
on negative attacks tends to restrict the strategic arsenal. A softer tactic is to discount the perceived
benefits of the unhealthy practice, such as assertions that smoking does not really impress peers.
In campaign messages that promote a positive product directly to a focal segment, a continuum
of prospective target responses can be explicitly recommended for adoption. These actions can vary
in their acceptability to the audience, based primarily on the effort and sacrifice required to perform
the behavior and the monetary expense. Barriers can be overcome with smaller or softer products
that demand lower investment and generate fewer drawbacks. For example, it may be fruitless to
advocate for a sizable degree of change, such as asking heavy smokers to quit smoking, because it is
beyond the audience’s latitude of acceptability (Sherif et al., 1965); however, an incremental “foot
in the door” strategy (Freedman & Fraser, 1966) that asks smokers to cut back on smoking may be
more effective for resistant audiences.
A major challenge in prevention campaigns is that the positive product or outcome is essentially
“nothing.” For example, terminology and imagery such as “drug-free lifestyle” and “abstinence”
have not been overwhelmingly effective in the alcohol, tobacco, and drug domains because “non-
use” is not an appealing option—creative labeling and packaging is necessary in these instances.
Some campaigns might instead promote modestly demanding products such as pre-behaviors (e.g.,
sign pledge cards, state intentions publicly, wear red ribbon) or limited forms of abstaining (e.g., keep

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drug-free for a week, delay use until later). For example, the “Not in Mama’s Kitchen” (NIMK)
campaign effectively employed pledge cards as a commitment strategy to reduce exposure to second-
hand smoke (SHS) among African American residents in Georgia (VanGeest & Welch, 2008). Again,
realistic expectations of intended campaign responses are developed from strong formative research
with the focal behavior and priority audience segments.

Message Types
Awareness, instructional, and persuasive messages are the three basic message types used to influence
target audiences. Awareness messages inform people about what to do, specify who should do it,
and provide cues about when and where it should be done. Instructional messages present “how to
do it” information. Persuasive messages feature convincing reasons that the audience should adopt
the advocated action or avoid the proscribed behavior. For audiences that are favorably inclined,
the campaign has the easier persuasive task of strengthening a positive attitude, promoting recom-
mended behaviors, and motivating behavioral maintenance over time. The relative emphasis on the
three types of messages will vary at different points of the campaign and for different target audiences
because the pathways to impact depend on the existing pattern of knowledge and attitudes of the
audience.

Persuasive Message Strategies

The most central and fundamental element of health communication campaigns is the content,
form, and style of individual messages. Sophisticated message design includes strategic selection of
substantive material, systematic construction of message components, and creative execution of sty-
listic features. In addition to the central need to focus on incentives in persuasive messages, several
additional message qualities for most pathways of influence increase effectiveness. Credibility, the
extent to which the message content is believed to be accurate and valid, is primarily conveyed by
the trustworthiness and competence of the source and the provision of convincing evidence (Ham-
ple & Hample, 2014). Whether it is Michael J. Fox for Parkinson’s disease, the American Diabetes
Association for diabetes, or Dr. Anthony Fauci for COVID-19, perceptions of source credibility
affect the believability and influence of a message. Campaign messages can be made engaging by
using stylistic features that are superficially attractive and entertaining (or less pleasing features that
are nevertheless arresting or refreshing) and including substantive content that is interesting, mentally
stimulating, or emotionally arousing. To influence behavior, the presentation must be personally
involving and relevant so receivers regard the recommendation as applicable to their situation and
needs. Finally, the understandability of the message contributes to recipient processing and learning. In
sum, the messages should be simple, explicit, sufficiently detailed, comprehensive, and understand-
able (see Chapter 28 on health literacy, this volume).

Incentive Appeals
The approaches used in health communication campaigns generally incorporate positive or nega-
tive incentive appeals. Message content that links desired health behavior to positive incentives
like valued attributes or outcomes (or unhealthy behavior with negative incentives) helps to move
audience members closer to recommended or desired behaviors (Smith et al., 2020). The classic
incentive strategy in health messages is to build on the existing values of the target audience and
offer a series of substantive arguments for or against a particular behavior, buttressed by credible
evidence or source assertions. Messages for high-involvement health practices tend to empha-
size incentives, presenting persuasive arguments supported by credible messengers and evidence

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to move the audience through a hierarchy of output steps such as attention, attitude change, and
action (McGuire, 2013).
Several widely used frameworks (theory of reasoned action, protection motivation theory, social
norms, and health belief model) employ a basic expectancy-value mechanism, wherein attitudinal
and behavioral responses are contingent upon each individual’s valuation of different outcomes pro-
moted in campaign messages. Appeals can emphasize the subjective probability of a consequence
occurring or the degree of positive or negative valence of that outcome (vulnerability × severity).
The prime communicative strategies are to either change beliefs regarding the probability com-
ponent or intensify the valence of the messages by emphasizing negative consequences, positive
benefits, or already salient advantages to engaging in recommended practices. For example, a breast
cancer prevention campaign message may strive to increase women’s perceived vulnerability by
citing a statistic that one in eight women will be diagnosed with breast cancer in her lifetime; the
same message might address severity by focusing on the fact that early detection via mammograms
increases survival rates, whereas late detection can lead to death.
Incentives can focus on physical health, time/effort, economic, psychological, and social dimen-
sions, with each one having both negative and positive value associated with them. The most fre-
quently used dimension is physical health, with negatively valued unhealthy outcomes like death,
illness, and injury featured more often than positive reinforcements. There is a need to diversify the
negative incentive strategies to include appeals not directly related to physical health per se (e.g.,
psychological regret or social rejection in anti-obesity messages) and to give greater emphasis to
reward-oriented incentives (e.g., valued states or consequences such as well-being, altruism, and
attractiveness as rewards for exercise).

NEGATIVE APPEALS

Health campaigns rely heavily on loss-framed messages designed to motivate behavior change by
threatening the audience with harmful outcomes from initiating or continuing an unhealthy prac-
tice. Beyond strong fear appeals, messages can include threats of a less severe nature and negative
incentives beyond the physical health domain. For many health topics, it might be best to select a
mildly valenced incentive that is highly probable. In the case of drug campaigns, for example, minor
negative physical incentives might be loss of stamina or weight gain, whereas negative social incen-
tives might include looking uncool, alienating friends, incurring peer disapproval, losing the trust of
parents, or deviating from social norms. Psychological incentives might include reduced ability to
concentrate, low grades, feeling lazy and unmotivated, losing control, and making bad decisions, as
well as anxiety about getting caught or experiencing harm, guilt, or loss of self-respect. Among the
economic incentives related to drugs are diminished job prospects, fines, the cumulative cost of pur-
chasing drugs, and the inability to spend money on other needs and desires. Finally, messages might
highlight penalties for violating laws and policies, such as incarceration, loss of a driver’s license, or
suspension from school.

POSITIVE APPEALS

Campaigns should diversify by presenting a proportion of gain-framed incentives (see O’Keefe &
Jensen, 2006, for a meta-analytic review). For most negative consequences of performing a rec-
ommended practice (e.g., not enough time to exercise), there is usually a mirror-image positive
outcome that can be promoted for performing the healthy alternative (e.g., exercise contributes to
longevity). In the physical health dimension, messages can offer incentives ranging from improved
mood to enhanced athletic performance. Similarly, social incentives might include being cool, gain-
ing approval and respect, forming deeper friendships, building trust with parents, and being a good

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role model, whereas psychological incentives might promise outcomes like gaining control over
one’s life, achieving a positive self-image, attaining one’s goals, and feeling secure. Incentivizing audi-
ence members through rewards that are relevant to them may work well as motivators.

MULTIPLE APPEALS

Dozens of persuasive appeals are potentially effective, and the degree of potency is roughly equiva-
lent in many cases. It is advantageous to use multiple appeals across a series of messages in a cam-
paign to influence different segments of the target audience (especially with channels where precise
targeting is difficult) and to provide several reasons for the individual to comply, while also repeating
a core message (Backer et al., 1992). In selecting incentives, the key criteria are the salience of the
promised or threatened consequences, the malleability of beliefs about the likelihood of experienc-
ing these outcomes, and the potential persuasiveness of the arguments that can be advanced. For
messages about familiar health subjects, it is important to include novel appeals to complement the
standard arguments. For example, because tobacco users often are attuned to health risks such as
emphysema and lung cancer, a novel approach might focus on how smoking can lead a smoker to
engage in disgusting behaviors such as picking up others’ half-smoked cigarettes when desperate for
tobacco (South Dakota Department of Health, 2020). Comprehensive and recent research on the
effectiveness of persuasive appeals includes reviews from both health advertising (see Chapter 20, this
volume) and health campaigns (Hornik et al., 2016), a meta-analysis of social norms (Rhodes et al.,
2020), and a state-of-the-evidence article on fear appeals (Ruiter et al., 2014).

Evidence
It is typically necessary to provide evidence to support claims made in campaign messages (Ham-
ple & Hample, 2014), particularly when belief formation is a central mechanism and when the
message source is not highly credible. One exception may include conservative audiences who are
less likely to change their beliefs according to new evidence (Pennybrook et al., 2020). The type of
evidence featured varies according to each audience, as research demonstrates that individuals sub-
jectively interpret different types of substantiation, with the inclusion of more than one type of sub-
stantiation often being most beneficial (Perrault & Silk, 2014; Van Stee, 2018). Statistical evidence
is more likely than narrative evidence to influence beliefs and attitudes, whereas narrative evidence
is more likely to influence intentions (Zebregs, 2014). Personal relevance or involvement also influ-
ences the effectiveness of evidence (Petty & Cacioppo, 1984). Messages should demonstrate how the
evidence is relevant to the situation experienced by the target audience. Special care should be taken
with the presentation of extreme claims (rare cases, implausible statistics, overly dramatic depictions
of consequences), as well as biased and misleading information.1 These elements may strain credulity
and trigger counterarguing among audience members and may be challenged by critics in rebuttal
messages. Reinard (1988) is a classic and strong primer on the evidence literature.

One-Sided Versus Two-Sided Content

Compliance with campaign message recommendations is impeded when audiences perceive obsta-
cles, drawbacks, and forsaken alternatives. The strategist faced with handling disadvantages can con-
sider the potential effectiveness of one-sided and two-sided messages (see O’Keefe, 1999, for a
review of these effects). A one-sided message strategy presents only the case favoring the desired
behavior, ignoring the drawbacks. In a two-sided message, the elements of the opposing case are
strategically raised and discounted in order to counteract current and future challenges. The three
basic techniques for addressing drawbacks are refutation, diminution, and tactical concession. First,

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supposed advantages of the unhealthy behavior or disadvantages of the promoted behavior can be
directly refuted by contrary evidence or emotional attacks. In other words, messages can acknowl-
edge that the competition has certain attractive aspects and then argue that each seemingly positive
consequence is either unlikely to occur, not so positive after all, or relatively unimportant. Second,
drawbacks of the focal behavior can be mentioned and then downplayed by arguing that these fac-
tors are relatively unimportant compared with the beneficial features. Third, minor disadvantages of
engaging in the recommended behavior can simply be conceded as a tactic for enhancing credibility,
which may increase the believability of the overall message.
Two-sided messages are more persuasive if the audience is sophisticated and knowledgeable about
the topic, predisposed against the position being advanced, wary of a manipulative intent, and already
aware of the pro arguments or likely to be exposed to them in the future. Additionally, a two-sided
message is often seen as more credible than one-sided content (O’Keefe, 1999). The main weakness
of a two-sided presentation is that it may heighten the salience of certain drawbacks that may not
have been considered by audience members when they weighed their decisions.

Awareness and Instructional Strategies

In addition to motivational appeals, communication campaigns typically include awareness and
instructional messages that highlight the health problem and solution, trigger appropriate behaviors,
and teach coping skills.

Awareness Messages
Awareness messages may be designed to create recognition of the topic or practice for a large por-
tion of the public; trigger activation among favorably predisposed audiences; use interpersonal influ-
ences or environmental forces as motives for compliance; encourage further information seeking about
the topic; and sensitize individuals to subsequently encountered messages. Encouraging information
seeking (see Chapter 27, this volume) is an especially crucial function of awareness messages because
campaigns with the broadest reach are not tailored to carefully segmented audiences and are gener-
ally superficial in content. Thus, awareness messages aim to stimulate interest and motivate audience
members to actively seek further information from additional sources like websites, hotline numbers,
counselors, parents, and opinion leaders. In both mass and social media, news stories, advertise-
ments, entertainment portrayals, online stimuli, and/or other public service campaigns may present
content that is consistent with campaign goals. Similarly, individuals may not be conscious of social
norms, interpersonal influences, behavioral models, or social conditions relevant to the focal behav-
ior. Thus, some campaign messages can sensitize audiences to attend to additional stimuli related
to the campaign topic. In the age of social media, one click or one search for a topic will create a
consistent stream of related advertisements, articles, and information.

Instructional Messages
In many health communication campaigns, there is a need to provide information that produces
knowledge gain and skills acquisition. If the behavioral components are elaborate or complex, messages
can educate the audience by providing a detailed blueprint. If the focal segment is subject to peer
pressure or exposed to unhealthy media portrayals, instructional messages can teach peer resistance
and media literacy skills. And messages can provide encouragement or training to enhance personal
efficacy. Given the potentially detrimental health effects of commercial advertising, entertainment
media portrayals, and low-credibility online sources, it may be wise to devote a modest proportion
of campaign messages to inoculating viewers and listeners against influences that might undermine the

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campaign. For example, Ohio teenager Ethan Lindenberger gained national media attention when
he sought advice about getting vaccinations on the social news aggregator, Reddit, during a 2018
measles outbreak in the United States, despite his mother’s belief in disproven vaccine conspiracies
(Epstein, 2019). When asked to testify before a 2019 Senate committee hearing about preventable
disease outbreaks, he expressed support for a national media campaign to combat the spread of mis-
information about vaccines (Johnson, 2019). Campaign efforts to promote COVID-19 vaccinations
in the coming years are likely to face a similar or even greater challenge because anti-vaccination
views proliferate more easily online than pro-vaccination views (Johnson et al., 2020).

Influential Source Messengers

The messenger, the model or character in the message that delivers information, demonstrates behav-
ior, or provides a testimonial, is distinct from the institutional sponsor and the message creator.
Atkin (1994) provides an elaborate discussion of the strengths and weaknesses of various types of
messengers. Messengers can enhance the content of the message by being engaging, credible, and
relevant; increase exposure by attracting attention; facilitate comprehension through personalization
or modeling of recommended actions; elicit positive cognitive responses through message evalua-
tion; heighten emotional arousal through identification and transfer of affect (from messenger to
message content); and increase message retention by being memorable.
Five key dimensions to source selection are expertise and trustworthiness (source credibility) and
familiarity, similarity, and likability to the target audience (facets of attractiveness). Expertise and
trustworthiness both contribute to the persuasive influence of a message with differential effects
based on variables of interest (Yoon et al., 1998). Furthermore, trustworthiness is effective when
audiences perceive the messenger as honest in character, sincere, or lacking self-interest (Hunt &
Frewer, 1999). Familiarity, existing knowledge of a source through previous exposure, is useful
when the familiar source is trusted and/or an expert. Similarity, typically based on target audience
demographics, shared attitudes, and common experiences, is used as a strategy when it is necessary
to model message recommendations or demonstrate consequences. For example, peer models are
important for youth, minority, and other nonmainstream audiences because they can increase identi-
fication and engagement with campaigns (Moran et al., 2012). Finally, likability seems to be an influ-
ential factor when the arguments are weak or when the target response is regarded as unappealing.
Eight types of messengers are often featured in campaigns: celebrities, public officials, expert spe-
cialists (e.g., doctors/researchers), organizational leaders (e.g., hospital administrators), professional
performers (e.g., models/actors), average people (e.g., blue-collar workers), especially experienced
people (e.g., victims/survivors), and unique characters (e.g., animated/costumed characters). Selec-
tion of the messenger depends on the predispositions of the target audience, persuasion mechanism
underlying the strategy, and type of message. Awareness messages might include celebrities, charac-
ters, or public officials, whereas instructional messages often rely on experts and persuasion messages
may feature ordinary people and organizational leaders. Professional performers appear in all types
of messages. Each source has its advantages and disadvantages.
For example, a medical authority or scientist would strengthen the expertise dimension of a
message but might be less engaging due to the complex information often featured in appeals that
rely on specific expertise.2 In contrast, a message that features a well-known celebrity can bring
great interest to a campaign message, especially if the celebrity has special competence or relevant
experience as a victim or survivor of the health problem. For example, rapper, actor, and activist
Common revealed his struggle with mental health in interviews and in his 2019 memoir, which also
helped shed light on the stigma of mental health in Black communities. Many celebrities are highly
respected and perceived as trustworthy on a broad array of topics; however, some celebrities may
elicit skepticism, distract from message content, lose their luster, or be perceived as unhealthy role

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models. Social media influencers (“micro-celebrities” who have a high number of followers; Carter,
2016) also have emerged as effective messengers who can extend campaign reach and engagement
(Kostygina et al., 2020). Despite certain drawbacks, the personalized, credible, and engaging quali-
ties of a source figure offer clear advantages over presenting message material without a manifest
messenger or only with attribution to an impersonal organization. Multiple messengers can increase
the odds of success in some cases, but this tactic may risk information overload and undermine con-
tinuity across message executions.

Selecting Appropriate Channels and Formats

According to an analysis of HINTS data, about 75% of adults in the United States go to the Internet
first to seek health information (Rutten et al., 2019). In disseminating messages, media campaign
designers should consider an integrated marketing approach that includes both digital media (e.g.,
social media, mobile apps, email) and traditional mass media (e.g., television, radio, newspapers).
Recent research demonstrates the increased reach of campaign messages via social media (Kostygina
et al., 2020). Even with the countless opportunities available to leverage media analytics and create
personalized digital content, campaigns can still benefit when they are supplemented by secondary
channels and vehicles (e.g., billboards, posters, theater slides), entertainment-education materials
(e.g., songs, program inserts, comics), and interactive technology (e.g., blogs, websites, mobile apps).
Email also can extend the interpersonal components of campaigns as in the Digital Heroes Cam-
paign (DHC; Rhodes et al., 2006), and smartphones are well suited to offer tailored, wide-reaching,
interactive, and continuing campaign interventions. Although channel selection is dictated by usage
patterns, limited resources play a pragmatic and pivotal role because public communication cam-
paigns do not enjoy the large budgets of commercial advertising campaigns.
In assessing each option for channeling campaign messages, campaign strategists can consider
myriad advantages and disadvantages along the following communicative dimensions:

• reach (proportion of community exposed to the message),

• specialization (targetability for reaching specific subgroups),
• intrusiveness (ability to overcome selectivity and command attention),
• safeness (avoidance of risk of boomerang or irritation),
• participation (active receiver involvement while processing stimuli),
• meaning modalities (array of senses employed in conveying meaning),
• personalization (human relational nature of source–receiver interaction),
• decodability (mental effort required for processing stimuli),
• depth (channel capacity for conveying detailed and complex content),
• credibility (believability of material conveyed),
• agenda setting (potency of channel for raising salience priority of issues),
• accessibility (ease of placing messages in a channel),
• economy (low cost for producing and disseminating stimuli), and
• efficiency (simplicity of arranging for production and dissemination).

Atkin (1994) provides a consideration of key strengths and weaknesses associated with each of these
communicative dimensions.
Research on the effect of social media features on positive health outcomes is limited but indi-
cates potential benefits of engaging users in digital behavior change interventions (Elaheebocus
et al., 2018). Regardless of the behavior targeted, many interventions reviewed by Elaheebocus
et al. (2018) included social media features such as communication (e.g., participants communi-
cate via chat rooms, email, or by indicating approval with “thumbs up” or “likes”), peer grouping

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(participants grouped by age, geography, or interests), activity data viewing (e.g., participants can
access peers’ activity data through notifications or by leaderboards), and data sharing. For example,
interventions that encourage physical activity and smoking cessation frequently incorporate data
sharing (e.g., participants in the intervention shared data about an activity or goal).
Messages appearing in the informational media tend to have greater credibility than packaged
messages that utilize an advertising format, and their credibility facilitates the formation of beliefs
regarding health consequences and the acceptance of recommended behaviors. Messages placed in
mainstream and social media can attract the attention of key informal influencers, who can exert an
indirect influence on the focal individuals. Health issues that gain visibility in the media can benefit
from the agenda-setting effect (e.g., the obesity epidemic in the United States), whereby problems
and solutions are perceived as more urgent and significant. This is particularly important in media
advocacy strategies targeted at opinion leaders and policy makers.
Entertainment-education, the practice of embedding health-related material in entertainment
programming or creating entertainment programming as a vehicle for health education, attracts large
audiences and conveys information in a relevant and credible manner. This approach has been quite
successful in promoting health across the world. Chapter 19, this volume, considers this strategy in
more depth.
There are thousands of websites and digital media resources offering a wide variety of health
materials, and many campaigns utilize these channels. In addition to providing prepackaged pages
and streaming video, these technologies have an interactive capacity that gives them an advantage
over standard media. Screening questionnaires can assess each individual’s capabilities, stage of readi-
ness to change, stylistic taste, knowledge level, and current beliefs and then direct the individual
to narrowly tailored, customized messages. Not only does this approach increase the likelihood of
learning and persuasion, but it also decreases the possibility of unintended effects (for a discussion of
unintended effects, see Cho & Salmon, 2007). Furthermore, entertaining interactive formats such as
games and other technology-based approaches are particularly well suited to youthful focal segments
(see Chapters 25 and 26, this volume).

Influencers and the Health Environment

It is often valuable for communication campaigns to supplement the direct approach (educating and
persuading the focal segment) by influencing other target audiences that can exert interpersonal
influence or help reform environmental conditions that shape the behaviors of the focal segment.
Health campaigns that integrate a range of media have considerable potential for producing effects
on institutions and groups at the national and community level, as well as motivating personal influ-
encers in close contact with individuals in the focal segment. These influencers can provide positive
and negative reinforcement, exercise control (by making rules, monitoring behavior, and enforcing
consequences), shape opportunities, facilitate behavior with reminders at opportune moments, and
serve as role models. Furthermore, influencers can customize their messages to the unique needs and
values of the individual.

Interpersonal Influencers
An important goal of campaigns is to stimulate interpersonal influence attempts by inspiring,
prompting, and empowering influencers. For example, a variety of peer and authority figures are in a
position to personally educate, persuade, or control adolescents: parents, siblings, friends, coworkers,
bosses, teachers, club leaders, coaches, medical personnel, and police officers. Social media influenc-
ers also can exert interpersonal influence as illustrated by “mommy bloggers” sharing breast cancer
risk reduction messages to followers (Wright et al., 2019). Influencers are likely to be responsive to

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negative appeals that arouse concern about harmful consequences to those they are trying to help
behave appropriately. Thus, some campaign messages should be designed to motivate facilitators and
enforcers to take action directly.

Social Policy Makers

Individuals’ decisions about health practices are strongly shaped by the constraints and opportunities
in their social environment, such as monetary expenses, laws, entertainment and social media role
models, commercial messages, social forces, and community services. Through the interventions of
government, business, educational, medical, media, religious, and community organizations, many
of these influential factors can be engineered to increase the likelihood of healthy choices or discour-
age unhealthy practices (e.g., banning of smoking in public spaces). These initiatives include direct
service delivery, restrictions on advertising and marketing practices, and taxation. More fundamental
long-range approaches might seek to restructure basic socioeconomic conditions by reducing pov-
erty, improving schools, broadening access to the healthcare system, and enhancing employment
opportunities.

Evaluation
Researchers have assessed the impact of media-based health campaigns using survey and experimen-
tal designs over the past several decades. The findings from a range of studies have been summarized
in literature reviews by Atkin (2001) and Backer et al. (1992) and in a meta-meta-analysis by Snyder
and LaCroix (2013). The preponderance of the evidence shows that mediated campaigns typically
have limited direct effects on most health behaviors; specifically, data suggest that although cam-
paigns are capable of exerting moderate to powerful influence on cognitive outcomes, they have less
influence on attitudinal outcomes and still less influence on behavioral outcomes. Further, the con-
ventional wisdom is that behavioral outcomes are more likely to occur in proportion to such factors
as dose of information, duration of campaign activities, integration of mass and interpersonal com-
munication systems, and integration of social-change strategies (enforcement, education, engineer-
ing). Social media analytics can provide more data for understanding dose-response relationships.
Additionally, campaigns that pair free or reduced-priced health products with mediated channels
have also been found to have increased effects (Robinson et al., 2014).
Still, campaigns do not always influence their intended audiences. Audience resistance barriers
arise at each stage of response, from exposure to behavioral implementation. Perhaps the greatest
challenge is reaching the audience and gaining its attention, particularly as audience fragmentation
has occurred along with the proliferation of media channels (Franklin et al., 2005). Other key bar-
riers include misperception of susceptibility to negative outcomes, deflection of persuasive appeals,
denial of applicability to self, rejection of unappealing recommendations, and inertial lethargy. Given
the many links in the effects chain necessary to lead an individual from initial exposure to sustained
behavioral change (McGuire, 2013), it is not surprising that expectations regarding campaign effec-
tiveness have become modest.
In addition to expected outcomes, campaigns are also capable of producing outcomes that are
both unexpected and undesirable (Cho & Salmon, 2007). For example, in his research on the “off-
setting effect,” economist Samuel Peltzman (1975) found that although seatbelts have saved the lives
of motorists, they may have increased deaths of pedestrians by inadvertently promoting higher rates
of reckless driving. In a comprehensive evaluation of the National Youth Anti-Drug Media Cam-
paign, Hornik et al. (2008) reported finding “unfavorable effects” in which the campaign may have
led to an increase, rather than decrease, in initiation of marijuana use. More recently, Iles et al. (2015)
found that public service announcements about eating disorders resulted in undesirable attitudes

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toward people with eating disorders. Although the obvious remedy would seem to be to conduct
more extensive pretesting, unintended effects of various types and magnitudes can occur in spite of
best intentions and state-of-the-art practices. Mass audiences are heterogeneous by definition, chock
full of sensation seekers and risk avoiders, precontemplators and contemplators, health zealots and
health resisters (Pirrone et al., 2020)—all who may respond to campaigns.
Campaign effectiveness typically is defined in relative rather than absolute terms. If a campaign
meets the objectives set by its planners, then it is labeled “effective,” and if it does not, then it is
labeled “ineffective.” Prescriptions for improving campaign effectiveness frequently have suggested
that campaign planners set readily attained goals and objectives (Fishbein, 1996). Lowering the bar
does not improve campaign performance per se, but it lowers expectations and thereby increases the
odds that the campaign will be viewed as a success. For instance, two campaigns could induce the
same level of behavioral change, but one might be judged effective and the other ineffective based on
the idiosyncratic goals and objectives that were set for each (see Salmon & Murray-Johnson, 2013).
Additionally, most of the published evaluations of campaign effects provide little useful information
about which components of the campaign contributed to the effect that was measured. Typical field
experiment designs, for example, do not permit examination and isolation of “what works.”

Conclusion
Drawing on this substantial body of scholarship, it is evident that many public health communication
campaigns have attained a rather modest impact because of meager resources, poor conceptualiza-
tion, and narrow strategic approaches. It is advisable to have realistic expectations and to leverage
the scalability of media that allows for great reach to audiences for marginal costs. Campaigns should
be prepared for the long haul because many will take years to achieve a significant impact (Sny-
der & LaCroix, 2013). More emphasis should be given to relatively attainable effects by aiming at
more receptive focal segments and by creating or promoting more palatable positive products with
a favorable cost-benefit ratio. Campaigns should play to the evident strengths of mass and social
media channels by imparting new knowledge (e.g., a TV spot informing people about the risks of
vaping), enhancing salience (e.g., news publicity stressing the importance of social distancing dur-
ing the COVID-19 pandemic), providing instruction (e.g., a website describing protective sexual
behaviors), triggering action (e.g., a radio announcement reminding listeners to not text and drive),
and stimulating information seeking (e.g., a Facebook ad linking to a website). Mediated campaign
messages should be augmented by supplementary education, persuasion, and control via classroom
instruction, physician advice, social influence, and environmental constraints, using the media cam-
paign to shape and energize these forces. The use of these approaches improves the likelihood of
campaign effectiveness.
Health campaign researchers have many opportunities to expand the theoretical and applied
literature on the processes and effects of campaigns, particularly as the channels of dissemination
have rapidly evolved to include a wide range of social media possibilities. Future investigations will
help us gain a better understanding of the complex combination of factors that determine campaign
effectiveness. Anker et al. (2016) provide a recent meta-analytic review of campaign effects. Cam-
paign-level analyses remain a priority over a narrow focus on message variables. Researchers should
address the impact of various quantities of campaign messages (e.g., point of diminishing return
for total volume of messages, wear-out point for specific message repetition), the optimum mix
of incentives across a diverse range of messages over the course of a campaign (e.g., physical health
vs. non-health dimensions, gain vs. loss frame), the appropriate ratio of direct vs. indirect pathways
(e.g., for simple vs. complex behavioral responses, willingness vs. apathy of potential influencers),
and the relative impact of varied combinations of channels and modes of directly disseminating key

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types of campaign messages. In each case, careful attention must be given to differential effectiveness
contingent upon the characteristics and predispositions of audience segments.
Ongoing research is needed to keep pace with the rapidly evolving technological landscape and
to assess the ever-changing potential of new technologies for enhancing health campaigns. Inves-
tigators can identify the most efficient approaches for utilizing traditional and emerging media to
drive key audiences to websites featuring information-rich content, individually tailored messages,
or immediate opportunities for behavior enactment. Moreover, campaign strategists have promising
avenues to further exploit social media connectivity in order to stimulate interpersonal influence
processes. Finally, researchers should continue the pursuit of interactive entertainment formats to
promote health-related learning and behavioral enactment.

Notes
1. In 2020, for example, misinformation and disinformation related to COVID-19 and political issues prolifer-
ated, intentionally and dramatically influencing audience members’ beliefs, attitudes, and subsequent behav-
iors in negative ways.
2. Evidence-based appeals that rely on the expertise of a credible authority drawing on a credible evidence base
are distinct from authoritarian appeals that rely on a “do it because I said so” approach.

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 24
COMMUNITY-BASED HEALTH
INTERVENTIONS
Taylor Goulbourne, Charles R. Senteio, Kathryn Greene, and Itzhak
Yanovitzky

Community-based interventions encompass a range of models reflecting different conceptions of

both the intervention target and the degree of community ownership and participation. In gen-
eral, four conceptions of community-based interventions emerge from the public health and health
communication literature: community as setting, community as target, community as resource, and
community as agent (McLeroy et al., 2003). The community as setting approach treats community as a
place or a space where the intervention is implemented. Interventions in this category target change
in community members’ health behaviors as a means of reducing the population’s risk of disease. The
community as target strategy aims to create healthy community environments through broad structural
changes in public policy and/or modifications to the physical, economic, or social environment. The
community as resource model is aimed at mobilizing a community’s internal resources or assets across
community organizations and sectors to strategically prioritize and promote public health goals.
Lastly, the community as agent conception is focused on building and supporting the natural adaptive,
supportive, and developmental capacities of communities.
The primary focus of this chapter is on the application of health communication strategies and
tools to build and support community capacities to respond to or otherwise cope with public health
challenges. Health communication campaigns are routinely employed to promote individual health
behavior change in an effort to address health disparities, and therefore they naturally complement
interventions that treat community as a setting. Campaigns also have an important role in drawing
community attention to social determinants of health and advocating for collective action (Nied-
erdeppe et al., 2008; see also Chapter 23, this volume). At the same time, there has been a growing
interest from health communication scholars in the role of communication to support community
capacity as a crucial mediating variable between health promotion interventions and population-
level health outcomes (Viswanath & Emmons, 2006; Wilkin, 2013; Yanovitzky & Weber, 2019).
This approach to health communication is better aligned with interventions that view communities
as a target, resource, or agent and deserves more systematic treatment in the health communication
literature. We begin with a brief overview of the types of interventions that have been implemented
to close gaps in communities’ access to and/or utilization of critical health information. We then
move to do the same for communication capacity-building interventions, which are interventions
that seek to build, leverage, or enhance a community’s communication infrastructure as a means to
improving the flow and exchange of critical health information. Given space limitations, our goal
is to showcase theoretical approaches and intervention models that drive this work and assess their
potential to advance health communication scholarship and practice.

DOI: 10.4324/9781003043379-30 353

 Taylor Goulbourne et al.

Health Information Technology (HIT) Interventions

The barriers that a particular social group or a community experiences in attempts to access critical
health information are an important determinant of differential health outcomes (Viswanath & Ack-
erson, 2011). Information-rich environments afford easy access to an abundance of information that
can be used to improve community preparedness, response, and recovery from shocks and stressors.
Information-poor environments, by contrast, present barriers to accessing critical health information;
these barriers then may hinder the community’s ability to respond effectively to challenges (Goulding,
2001). The existence of systemic inequity in the diversity, quality, access, and credibility of health infor-
mation available across different groups is well documented in the literature (Friedland et al., 2012).
Our focus in this chapter is on interventions that target improvements in access to health information.

Theoretical Foundations and Approach

Health information technology (HIT) has significant potential to engage individuals in managing
their health by providing tools to track, manage, and interpret personal health metrics. Such tools
can help to overcome barriers to the acquisition and use of critical health information by empower-
ing individuals to ask questions, communicate concerns, identify and assess alternatives, reflect on
progress, and alter their health behavior. However, the reach of HIT among underserved groups
remains limited. Interventions that seek to improve community access to and/or utilization of health
information draw upon a range of theories and frameworks to develop and test models that explain
information behavior (Gray & Sockolow, 2016).
Community engagement and participatory design (PD) are increasingly recognized as the
foundation of effective HIT interventions, particularly those that target improvements in access to
and use of health information by underserved groups (Unertl et al., 2015). For more than 20 years,
community-based participatory research (CBPR) has been used to develop and implement HIT
interventions, in part because this approach has proven to be a better fit with efforts to address
health inequities with direct input from the community (Lucero et al., 2016). The CBPR approach
is well suited for guiding these types of interventions because it calls for engagement with com-
munity members at each stage of the research process. This engagement includes the identification
and refinement of the focus of the intervention along with content creation, intervention develop-
ment, and initial implementation; research design and data analysis; intervention dissemination on
a broader scale; and policy advocacy and creation (Belone et al., 2014). Community input is essen-
tial in order to select, refine, and engage in culturally centered methods (Dutta, 2007). Engaged
research such as CBPR better positions the investigation for describing and addressing the various
barriers known to influence health outcomes (e.g., social determinants of health) that define
health inequity across various populations and clinical conditions. This approach continues to be
refined to clearly articulate the linkages between specific CBPR processes and outcomes (Hicks
et al., 2012). In general, CBPR and similar approaches (e.g., user-centered design and PD) bring
a number of important benefits to the development and implementation of HIT interventions:
more relevant research, wider impact, better fit between interventions and target beneficiaries,
more effective recruitment and retention of diverse populations, improved internal validity, more
rapid translation of research into action, and further development of people (e.g., community
health workers transitioning to higher-level research positions; Unertl et al., 2015).

Examples of HIT Interventions

A useful way to classify HIT interventions is by functionality (see Finkelstein et al., 2012), and one
such function is promoting patient-centered care. For example, care management tools such as elec-
tronic health records and fitness tracking apps are designed to guide and support patients’ self-care;

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telehealth and telemedicine are intended to improve timely access to healthcare providers for patients
who have limited access to care; patient portals can improve the coordination of care and the delivery
of patient education resources; and shared decision-making tools are developed to facilitate patient
engagement and participatory medical decision-making.
HIT interventions that are targeted to communities typically have a built-in community engage-
ment component. Magasi and colleagues (2019), for instance, designed a community-informed
mHealth (i.e., mobile health) tool for peer support and information sharing to address the needs of
people with cancer and disabilities. By engaging this group, they created a tool (the WeCanConnect
app) that is designed to leverage existing strengths within this community and promote connectivity
and emotional support. However, community engagement can be expanded to include community
members beyond patients. For example, in research by Senteio (2019), a group of older adult African
Americans with diabetes and young adults connected to them via familial or naturally occurring
social networks partnered with researchers on the design of a self-management health education
intervention that leveraged intergenerational information exchange to overcome digital literacy bar-
riers that many patients in this group experience.

Community Norms-Based Health Communication Interventions

A second group of community-based health communication interventions is focused on influencing
community culture. Community culture evolves from community members’ shared experiences,
values, and aspirations. As such, it serves as a powerful prism through which group or community
members make sense of health information and form normative expectations regarding their per-
sonal behavior or conduct. The primary objective of this type of community-based intervention is
to influence or otherwise leverage community culture to promote individual and population health.

Theoretical Foundations and Approach

Culture is frequently used as an audience segmentation variable in health communication interven-
tions, specifically for targeting and tailoring health information (Kreuter & McClure, 2004). Tar-
geting involves the delivery of health information that is relevant and responsive to the needs of a
particular cultural group. Kreuter et al. (1999) defined tailoring as “any combination of information
or change strategies intended to reach one specific person, based on characteristics that are unique to
that person, related to the outcome of interest, and have been derived from an individual assessment”
(p. 277). Some—but certainly not many—of these interventions draw on community members and
their experience(s) in developing the intervention/messages. The absence of community participa-
tion in the design of such interventions can undermine message acceptance, in part due to culturally
driven suspicion and mistrust (Benkert et al., 2019).
Normative influence offers another mechanism for integrating health communication interven-
tions within community culture. Social norms marketing campaigns are a familiar example of this
approach (DeJong, 2010). They are based on the premise that individuals misperceive (i.e., under- or
overestimate) their group or community norms regarding a certain health behavior or practice and
that correcting these misperceptions puts pressure on individuals to align their behavior with the
true group norms. Two types of norms, in particular, appear to be relevant in this context: injunctive
norms, or the perceived approval of a behavior by others, and descriptive norms, or perceptions regard-
ing others’ engagement in behaviors (Lapinski & Rimal, 2005). An alternative strategy to correcting
misperceptions is to make a particular norm more salient—thereby temporarily increasing its acces-
sibility from memory—to increase the influence of this norm on behavior (Rhodes & Ewoldsen,
2009). Neither strategy, however, appears to be capable of producing a community-wide change in
behavior (Dempsey et al., 2018).

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In addition to culture-based tailoring and normative approaches, inoculation-based strategies

present a third venue of community norm-focused interventions. The primary objective of these
strategies is to build individual and community resilience to potentially harmful cultural influences
that are propagated via advertising, social media, and other similar channels. The point is to influ-
ence group or community members to collectively reject a potentially harmful practice or norm.
Media literacy-based interventions are familiar examples of this strategy (Austin & Pinkleton, 2016;
Banerjee & Greene, 2007). Group members (often youth) are first educated (forewarned) about the
manipulative practices employed in advertising of substances such as alcohol and tobacco and then
provided with strategies or skills to resist their influence. Similar strategies are employed to decrease
the spread and harmful effects of health misinformation and disinformation within communities, for
example, by building community members’ capacity to detect and delete information from unveri-
fied sources (Swire-Thompson & Lazer, 2020).

Examples of Community-Based Interventions

We provide three examples of substance use prevention interventions that seek to involve community
members in a central way in their design and implementation. The examples are selected because of
the multiple phases or repetitions of interaction with the target audience members, which is optimal
to developing effective community-based interventions (Senteio, 2019). The first two interventions
(YMD and REAL media) function by increasing information literacy and building skills to resist
influence from substance use advertising. The last intervention (kiR) focuses on building resistance
to substance use offers as key to improving individual- and community-level outcomes.

Youth Message Development

Youth Message Development (YMD; Greene et al., 2016) is a face-to-face, active involvement media
literacy intervention designed to prevent alcohol use among early high-school-aged youth. The
formative research to adapt the YMD curriculum included three distinct components across two
years, conducted in partnership with a youth leadership program in one state and public schools
in another state. First, a post-test-only pilot study compared two versions of the preliminary cur-
riculum. One version used a strategy that analyzed and critiqued pro- and anti-alcohol ads; the
other version also analyzed and critiqued ads but then engaged youth in developing plans to create
an anti-alcohol poster. Program developers obtained written and oral feedback from both partici-
pating students and adults who accompanied students to the program and viewed the interven-
tion. The second component of development included interviews with a separate cohort of high
school students to assist with selection of advertisements and other curriculum refinements. The
third component consisted of focus groups with an additional cohort of high school students
and teachers to solicit feedback on a revised version of the curriculum and related materials (see
Greene et al., 2016). The resulting test of YMD curriculum produced desired outcomes three to
four months later, such as youth reporting talking more about the curriculum and media literacy
with friends and family and youth reporting greater self-efficacy to develop counter-arguments to
advertisements (Banerjee et al., 2015). The intervention was designated “effective” and listed in
the Substance Abuse and Mental Health Services Administration (SAMHSA) National Registry of
Evidence-Based Programs and Practices (NREPP) review. Although the YMD program adaptation
was iterative and engaged multiple stakeholders in the process, the researchers did not work col-
laboratively with the community in terms of program development or identification of the prob-
lem/focus. The program also did not lead to the creation of ongoing and sustainable community
relationships.

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REAL Media
REAL media, an extended e-learning version of YMD, was developed and adapted iteratively with
a national community partner, 4-H (head, heart, hands, and health), one of the largest positive
youth development programs in the United States. REAL media is grounded in the theory of active
involvement (TAI; Greene, 2013; Greene & Hecht, 2013; Greene et al., 2017) and focuses on
individual engagement with the intervention itself (see Greene et al., 2021; Ray et al., 2020). The
program targeting strategy included some superficial features (logos, 4-H images), but the examples,
format, and features were developed in conjunction with 4-H partners across two states. Participants
in the development (see Ray et al., 2019) included 4-H staff, 4-H club leaders, and 4-H club mem-
bers in the target age range. The iterative nature included rounds of interviews, focus groups, and
usability testing such that the content was modified (but not developed, as would be ideal) in phases
with the target 4-H youth (age 13–16). The draft online program was then piloted by target-age 4-H
club members (and several 4-H leaders) for usability feedback to further refine the intervention and
ensure maximal community engagement. There are opportunities within such a program for tailor-
ing, such as “gamifying” the program with individual scores on activities, but the limited tailoring
in REAL media included choices of program paths (optional depth) and feedback on activities, as
well as level-ending “challenges.” One test of REAL media across nine U.S. states indicated that use
of the program improved youth self-efficacy and substance use norms (Greene et al., 2020), and the
project developed a continuing relationship (more than seven years to date) with 4-H at both state
and national levels, including multiple publications with a 4-H leader.

Keepin’ it REAL
Keepin’ it REAL (kiR) is a school-based substance use prevention intervention that has been itera-
tively refined across a number of years. The project now spans decades and is disseminated world-
wide with multiple variations, and the communities involved in its development include schools/
staff and youth in multiple states, as well as Drug Abuse Resistance Education (D.A.R.E.) as a
partner. The kiR curriculum is founded on principles of “from kids through kids to kids” (Kreiger
et al., 2013; Miller-Day & Hecht, 2013). This perspective argues that stories resonate best with and
have a greater impact on people if they arise from their experiences (Lee et al., 2011; Miller-Day &
Hecht, 2013). In the context of substance use prevention, for example, if the story of drugs is one of
users being mature, adventurous, and popular (Miller-Day et al., 2000), the goal may be to provide
positive counter-narratives about nonuse. The intervention social influence strategy was predicated
on teaching “resistance skills” or strategies for resisting negative peer influence (Miller-Rassulo et al.,
2000) to promote competent resistance without implying that “everyone is doing it” (i.e., the risky
behavior) while also conferring anti-drug norms. The involvement of members of the target audi-
ence is vital to this process in both message generation (e.g., basing messages on narratives) and
message production (i.e., having kids create the messages). Ultimately, these rich narratives produced
resistance strategies that were labeled REAL (refuse, explain, avoid, and leave), and these strategy
categories have been replicated across age, ethnicity, gender, and regional differences (Colby et al.,
2013; Miller-Day et al., 2013).

Communication Capacity-Building Interventions

Improving community members’ access to critical health information alone rarely leads to popula-
tion-level improvements unless it can stimulate social interactions among community members that
lead to collective action (Fox, 2011). For this reason, the communication infrastructure of a com-
munity provides a crucial bridge between knowledge acquisition and action. The communication

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infrastructure refers to the formal and informal communication channels and networks that mem-
bers of a social group or community utilize to interact with one another and to exchange and discuss
health information (Goulbourne & Yanovitzky, 2021). In general, a community’s communication
infrastructure serves three important functions: (a) enabling all members of the community to access,
share, and exchange timely, relevant, and accurate health information, (b) facilitating community
members’ meaningful engagement with health information via social interactions, and (c) promoting
greater social integration among community members that builds collective efficacy and capacity
to engage in collective action. Communities with a robust communication infrastructure are more
likely to recognize real problems, develop solutions, and include stakeholders who partner with the
research team and coordinate with the team on the application and evaluation of those solutions
(Hossain & Kuti, 2010; Wilkin, 2013).

Theoretical Foundations and Approach

Communication capacity-building interventions have a rich history in development communica-
tion (Hornik, 1993), with a particular focus on building or supporting communication platforms for
the effective dissemination of health information via strategies such as diffusion, social marketing,
and entertainment-education (Melkote, 2003). Although the primary focus of these interventions
is on improving population health by targeting individual behavior change, recent theoretical con-
tributions such as the communication infrastructure theory (Kim et al., 2006; Wilkin, 2013), the
structural influence model of communication (Ackerson & Viswanath, 2009; Viswanath & Emmons,
2006), and the communication theory of knowledge brokering (Yanovitzky & Weber, 2019) are
focused on building or otherwise leveraging the community’s communication infrastructure as a
means for improving knowledge flow and mobilizing knowledge into action.
The communication infrastructure theory (Kim et al., 2006) proposes that neighborhoods have
unique multilevel communication infrastructures that influence the capacity for resident health.
These communication structures, known in the theory as storytelling networks, consist of com-
munity organizations, geo-ethnic media (media that target a particular geographical region or cul-
tural group), and residents (Kim et al., 2006). Neighborhood factors that can facilitate or impede
communication, such as spaces where people can meet and discuss issues facing the community,
constitute the communication action context. Both people as individuals and the community as
a whole are more likely to experience positive health outcomes when the communication action
context facilitates a strong storytelling network. The theory has two important practical implications
for community capacity-building efforts (Wilkin, 2013). First, mapping the storytelling network
in a community can inform the implementation of more targeted strategies to reach and engage
residents, particularly groups that are not already reached through use of regular channels. Second,
creating spaces and opportunities for residents and community organizations to exchange informa-
tion and discuss responses to health issues they face can increase levels of collective efficacy and civic
engagement needed to produce effective response to health challenges.
The structural influence model of communication (Viswanath & Emmons, 2006) posits that
communication inequalities mediate, at least partially, the effect of social determinants and health
outcomes. Communication inequalities are defined as “differences in the generation, manipulation,
and distribution of information among social groups; and differences in (a) access and use, (b) atten-
tion, (c) retention, and (d) capacity to act on relevant information among individuals” (Viswanath &
Emmons, 2006, p. 242). According to this model, structural antecedents such as socioeconomic
status and community resources influence both the information environment and the resources that
are available for group consumption, therefore disproportionally disadvantaging some communities
and groups and benefiting others (Viswanath & Ackerson, 2011). Communication and information
inequalities can be addressed through interventions that build the capacity of socially disadvantaged

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communities and groups to access and comprehend critical health information while at the same
time ensuring that the information provided is less general or generic and more reflective of the
group’s experience with a health issue or stressor.
Another theoretical contribution is focused on building the capacity of community interme-
diaries, or knowledge brokers, to improve the flow of health information to and among individu-
als, groups, and community institutions. According to the communication theory of knowledge
brokering (Yanovitzky & Weber, 2019), knowledge brokers such as local news outlets and com-
munity-based organizations have a crucial role in improving knowledge flow by performing five
crucial functions: awareness (drawing attention to relevant health information), accessibility (making
health information more accessible and comprehensible to users), engagement (connecting health
information to the unique problems and challenges faced by the community), linkage (connect-
ing and coordinating information dissemination activities in the community), and mobilization
(pushing for specific individual and collective actions based on available health information).
Building and supporting the capacity of intermediaries to perform these five crucial functions—
whether through communication skills training, technical assistance, or collaboration tools—is
therefore expected to improve individual and community-level knowledge acquisition, transfer,
and mobilization, which in turn can lead to improved health outcomes for individuals, groups,
and communities.
These theories are centered on the principles of community participation, empowerment,
and action, but they do not explicitly theorize about the optimal scope and nature of community
involvement in communication capacity building. That is, they intentionally avoid the common
distinction between interventions that treat community participation as a means and those that treat
community participation as an end (Melkote, 2003) in favor of a looser definition of community
participation as a function of community capacity and readiness to participate. Moreover, they do
not prescribe a single strategy for building communication capacity but rather envision a range of
possible interventions. These interventions range from building a capacity that does not already
exist in the community to leveraging an existing capacity to supporting the sustainability of crucial
capacities. Capacity building, leveraging, and/or supporting interventions may also be tailored to the
unique circumstances of each community. For this reason, we chose to organize examples of com-
munication capacity-building interventions according to goal (building, leveraging, or augmenting
communication capacity), recognizing that the level of community participation in the design and
implementation of these interventions varies as a function of intervention philosophy and commu-
nity circumstances.

Interventions That Build Community Communication Capacity

Interventions that fall into this category typically seek ways or mechanisms to build community
capacity to produce and disseminate hyperlocal health information, or information that is tailored to
a well-defined community and is responsive to the concerns and information needs of community
members (Napoli et al., 2017). One class of interventions in this category aims to build the capacity
of local communities to map and assess information needs, as well as identify optimal channels for
reaching diverse groups (see Wilkin et al., 2011). For example, the Racial and Ethnic Approaches
to Community Health (REACH) 2010: Charleston and Georgetown Diabetes Coalition program
involved a partnership among community organizations, public libraries, and community health
advisors who collected and analyzed survey and focus group data collected from Black community
members to identify communication needs and assets. The group then formulated an action plan to
increase the dissemination of diabetes information to this population (Carlson et al., 2006).
A second type of intervention in this category is focused on the production of hyperlocal informa-
tion that is not available from other sources. For example, researchers created and operated Ozioma,

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a cancer information news service that compiled community- and race-specific cancer news releases
that were disseminated to Black weekly newspapers (Caburnay et al., 2012). The National Cancer
Institute subsequently created the Multicultural Media Outreach program to provide local ethnic
media outlets with tailored, ready-to-use evidence-based cancer education information for wide-
spread community dissemination (Alexander et al., 2013).
A third general strategy is to build the capacity of key intermediaries in the community. Some
local news outlets, for example, are important and trusted sources of hyperlocal health information
in many communities (Napoli et al., 2017). Many local journalists lack health reporting skills; pro-
viding them with relevant training about how to acquire, evaluate, and interpret health information
for lay audiences can improve the quality and relevance of health information that is circulating
in communities (Friedman et al., 2014). Unfortunately, systematic disinvestments in local news
(Walker, 2019) have devastated the local news media market and created many news deserts, particu-
larly within rural areas (Grieco, 2019). Although this situation calls for structural interventions such
as the creation of a state-funded nonprofit entity in New Jersey (the Civic Information Consortium)
to fund local news organizations (Nossel & Vilk, 2020), interventions in this category may seek to
improve the community’s capacity to advocate for such resources and public investments (Kim &
Ball-Rokeach, 2006).

Interventions That Leverage Existing Community Communication

Capacity
Interventions in this category seek to leverage, rather than build, existing communication capacity
within communities. Most familiar are interventions that seek to leverage existing spaces and events
in the community as alternative channels for communicating health information, particularly for
populations that are not effectively reached by mainstream channels or that have limited contact with
the healthcare system. Public libraries (Whitney et al., 2017), barbershops and beauty salons (Linnan
et al., 2014), and places of worship (Campbell et al., 2007) are all examples of alternative channels
that have been utilized to this end. In addition to improving health communication outreach, the
opportunity to be in regular contact with other community members that frequent these spaces is
essential for building communicative social capital (i.e., access to information and knowledge that
is available through community networks), community integration, and collective efficacy to cope
with health stressors (Matsaganis & Wilkin, 2015).
A second class of interventions is focused on stimulating community dialogue regarding health
issues as a means to promote broad community engagement, inclusiveness, and diversity of perspec-
tives that can inform collective decisions regarding local solutions to public health challenges. This
form of community dialogue is essential to improving the flow and exchange of health information
in the community but is also necessary for cultivating collective trust and building collective efficacy
to respond to challenges. For example, opioid town hall meetings provide officials and public health
experts who influence policy an opportunity not only to educate residents about the opioid addic-
tion problem in their community and what is being done to prevent it but also to listen and learn
firsthand about residents’ concerns and information needs (Bejarano, 2019). Community dialogue
can also be supported by leveraging community storytellers, such as geo-ethnic media and local
activists, to produce and share authentic stories that become the topic of conversations in the com-
munity (Brown et al., 2018), therefore keeping residents educated and engaged regarding health
challenges that are affecting their community.
Another class of interventions is focused on improving linkages among sectors and organiza-
tions in the community to leverage their pooled resources and existing relationships with resi-
dents to better coordinate dissemination efforts and improve community outreach. Many such
interventions are focused on building partnerships within the community to provide essential

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resources and information to diverse groups of residents, particularly in times of public health
emergencies. For example, the Emergency Community Health Outreach (ECHO) network
in Minnesota has established a unique partnership with a public television station to regularly
broadcast short programs presented by representatives from ethnic refugee and immigrant groups
in the state about a range of topics such as family disaster preparedness plans and crisis counseling
(Andrulis et al., 2007).

Interventions That Augment Community Communication Capacity

Interventions in this category seek to enhance a community communication capacity by introducing
and institutionalizing evidence-based practices. To be efficient and effective, community communi-
cators and storytellers can benefit from research-based insights, whether from communication science
or public health, to make informed choices regarding communication strategy: what to communicate,
to whom, how, when, and where. The idea is not to simply expose community communicators and
storytellers to general guidelines or best practices of communicating health information effectively
but rather to build their capacity to routinely collect and analyze data that can inform local strategic
communication decisions and allow for a coordinated communication approach, particularly within
nearly impossible time constraints. This type of intervention is most common in the context of efforts
to build well-integrated systems of emergency preparedness because effective communication before,
during, and after disasters to culturally diverse audiences of wide-ranging health literacy is a critical
component of any preparedness effort (Institute of Medicine & National Research Council, 2005).
Building communicators’ capacity to effectively present research findings through data visualiza-
tion tools is an example of one type of intervention that is designed to augment existing community
communication capacity. As the use of national and local surveillance systems to track population
health indicators is increasing, there is an opportunity to compile and share such hyperlocal infor-
mation with members of the community to promote accurate assessment of risks. Tools such as
infographics and interactive data dashboards improve the ability to communicate this information to
diverse groups of audiences. For example, the Connect2HealthFCC platform (www.fcc.gov/health/
maps) allows communicators to generate customized maps displaying broadband access, adoption,
and speed paired with various health measures (e.g., obesity, diabetes, and physician access) in every
U.S. state and county, including urban and rural areas. Maps of this type can be used not only to
facilitate residents’ comprehension of health risks but also to support policy advocacy efforts.
A similar type of intervention involves the creation of surveillance (infodemiology) systems to
track changes in residents’ access, comprehension, and use of health information. The goal is to
identify gaps in resident awareness of, access to, and engagement with health information, as well as
to identify opportunities to improve communication. In principle, infodemiology, which is akin to
tracking and monitoring the epidemiology of diseases, conditions, and other health-related factors,
aims to track and monitor information needs of diverse groups, assess the degree to which available
information matches their needs and ability to process health information, and generate insights
regarding ways to improve outreach and engagement (Eysenbach, 2009).
Finally, research-community partnerships offer another venue for further building the capacity
of local officials, public health professionals, and community organizations to communicate health
information effectively through evidence-guided audience analysis and message design. Research-
community partnerships are long-term collaborations between researchers and community stake-
holders that are focused on addressing problems of practice (Green et al., 2001). They are intended
to support local knowledge networks by collecting and analyzing relevant social and behavioral data
for environmental scanning (e.g., community climate and readiness), stimulating the sharing of ideas
and perspectives among community stakeholders, coordinating activities, and mobilizing resources
in the community (O’Hair et al., 2010). This type of collaboration, for example, has been shown to

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produce an effective combination of a social marketing campaign and efforts by community stake-
holders to collect unused opioid medications stored in residents’ homes as means to decrease the risk
of opioid addiction in the community (Yanovitzky, 2017).

Discussion
Access to critical health information is key to improving positive health outcomes for all people
(Viswanath & Ackerson, 2011), and communities that maintain a rich, diverse, and inclusive flow of
information and structured mechanisms and opportunities for public discussion are better positioned
to recognize health problems, develop solutions, and mobilize into action (Hossain & Kuti, 2010).
Communication provides both the infrastructure and the basic mechanism through which health
information is exchanged and interpreted (Rimal & Lapinski, 2009), yet many communication-
based interventions treat communities as merely a setting or a place for the dissemination of health
information. Although community membership can be a useful dimension of audience segmenta-
tion and subsequent targeting and tailoring of health information to diverse social groups (Kreuter &
Wray, 2003), the overview of community-based health interventions provided in this chapter sug-
gests a greater role of communication-based interventions in building the capacity of communities
themselves to access and communicate health information. In this way, communities are transformed
into agents of change (McLeroy et al., 2003), with the power to leverage local communication net-
works and localized knowledge and capacity to respond more effectively to health risks and build
resilience and collective efficacy to cope with health stressors.
Over the past two decades, there has been growing interest from health communication and
health informatics scholars in the potential of structural communication interventions to improve
access to and utilization of relevant, credible, and useful health information in communities with
diverse information needs, circumstances, and capabilities. As a result, much progress has been made
toward constructing empirically valid theories that explain how and under what circumstances
building, leveraging, or augmenting a community’s information and communication infrastructure
can facilitate the flow and exchange of health information, contribute to social integration and col-
lective efficacy, promote coordination among stakeholders, and mobilize residents and community
organizations into action. This has challenged old conceptions about the use of communication in
health and introduced new perspectives on health communication. Despite this, we note the relative
paucity of studies that have tested the effects of such interventions. Interventions that target changes
in communication ecologies are notoriously challenging to implement and evaluate (Houston et al.,
2014), but they also provide a better fit to the complexity of promoting healthier behaviors and
lifestyles and helping residents navigate the health challenges they experience in their communities
than do interventions that neglect a community’s communication infrastructure. With the increasing
ubiquity of information and communication technology as a means for improving access to and flow
of information and recent theoretical and methodological advancements in the study of communica-
tion ecologies, we fully expect to see increased use of this type of intervention as the field of health
communication advances.
Looking ahead with an eye toward developing robust communication and information commu-
nity-based interventions, it is important to consider that detailed accounts of how relationships were
established and maintained with communities, the nature and scope of the partnership, and what
new knowledge was gained as an outcome of the partnership are notably missing from the current
literature. Without having this information, it is difficult to construct a generalizable body of knowl-
edge that can support the scaling up of these types of interventions and also facilitate evaluation of
these interventions by establishing common metrics of impact. In this respect, it is important to
recognize that community engagement comes in different sizes and forms that may be organized on

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a continuum ranging from passive community involvement (e.g., an informed community) to a full
partnership model. The challenge moving forward is to develop a better sense of how to choose and
implement a particular model of community engagement that is optimally matched to the particular
circumstances and existing capacity of each community.

Future Directions
Community-based health interventions have significant potential to improve health outcomes for
diverse groups and communities by improving their engagement with health-related information
and mobilizing key stakeholders and institutions into action. The question of how to engage with
communities most efficiently and productively to access, comprehend, assess, manage, and act on
health information that is available to them may prove to be transformative to the health communi-
cation field. In particular, it presents an opportunity to shift the traditional focus on communication
as an information transmission and translation tool toward a deeper consideration of the role of com-
munication mechanisms and processes in building capacity to organize, coordinate, and collectively
promote the types of social and structural changes that are necessary for eliminating existing health
disparities. As we demonstrate in this chapter, there is already a sound body of theoretically informed
scholarship that can inform this line of research, but empirical research that tests these theories is still
lagging. As this body of work continues to grow in the coming years, we fully anticipate that it will
significantly expand the currently limited understanding of the contribution of communication to
public health outcomes within the social determinants of health framework.

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 25
TECHNOLOGY-BASED
INTERVENTIONS FOR HEALTH
PROMOTION AND DISEASE
PREVENTION AND TREATMENT
Jessica Fitts Willoughby

As technology has continued to advance and change, so have the opportunities for communicating
health content and providing intervention materials to audiences. Technology-based interventions
for health promotion, disease prevention, and treatment can go by a variety of names. Electronic
health (eHealth) is a broad category encompassing the use of electronic devices to communicate
health information; it includes a wide variety of health applications ranging from interventions to
use in online communities to interventions designed for disease management and care (Noar & Har-
rington, 2012). Mobile health, or mHealth, is the use of mobile devices and applications to gather
health-related data and/or provide mobile intervention (Cameron et al., 2017). This can involve
applications ranging from something as basic as text messaging, which can be delivered on mobile
devices (e.g., Willoughby, 2015), to more sophisticated interventions that involve biosensors (e.g.,
Liao & Schembre, 2018) or just-in-time adaptive interventions (JITAI) that provide tailored support
to participants in a moment of need (e.g., Graham & Bond, 2015).
In this chapter, I will be discussing technology-based interventions for health promotion, disease
management, and treatment, providing an overview of the field, including examples in practice and
a description of the role of theory. I will also provide an overview of limitations and potential future
research directions. As noted, technology-based interventions go by a variety of names (eHealth,
mHealth, digital interventions, health apps, Internet-based interventions [IBIs], etc.; see Chapter 26,
this volume), and they are broad and frequently evolving, in part due to the ever-changing nature
of technology. Therefore, this chapter is not meant to encompass all available information related
to technology-based interventions; it is instead meant to provide an overview, giving the reader an
understanding of what technology-based interventions can offer and examples that have been used
for health communication efforts in various topic areas. It should also be noted that much research
on technology-based health interventions, including most of the information presented in this chap-
ter, tends to be from the post-positivist paradigm. Other research, however, examines technology-
based interventions from different frameworks (e.g., a critical realist framework; Wall et al., 2019).

An Overview of Technology-Based Interventions and Important

Considerations
Many technology-based interventions for health promotion, disease prevention, and treatment exist.
As noted, a number of names have been used to refer to such interventions. These interventions can

DOI: 10.4324/9781003043379-31 367

 Jessica Fitts Willoughby

take place across channels, distributed through text messaging, social media, websites, online games,
mobile applications (apps), and other digital spaces. Reviews cover eHealth technology-based inter-
ventions for specific topic areas (e.g., HIV prevention; Noar & Willoughby, 2012). Sama et al. (2014)
describe a variety of mobile applications in the health and wellness category of the Apple iTunes
store, categorizing different uses and functions of such applications. For example, some applications
aim to influence the environment in which a participant experiences the intervention (e.g., the
inclusion of relaxing music during a meditation app) or allow for the tracking and self-monitoring
of behaviors (e.g., trackers that allow you to log meals and calculate calorie consumption).
The different technologies through which interventions are offered come with various affor-
dances that can influence users’ experiences with the technology and therefore the intervention.
A technological affordance is the possibility for action and opportunity that are available to users
when engaging with a technology (Faraj & Azad, 2012). For example, the opportunities presented
to users when an intervention is conducted through Instagram (an image-based social networking
site that allows users to follow and interact with others) would likely differ from those available to
participants using a text message intervention in which a single message was pushed directly from an
organization or individual to the user. In this chapter, I will discuss the different types of interven-
tions together, specifying the channel through which an intervention was developed, as appropriate,
and highlight specific features and/or affordances that were part of the intervention that could influ-
ence intervention success.
Although evidence has often found that technology-based interventions for health promotion,
disease management, and treatment may be efficacious (e.g., Marcolino et al., 2018; Seiler et al.,
2017; Yang & Van Stee, 2019), much is still unknown about the mechanisms that make an inter-
vention most effective. New methods of testing can help provide insights into the effects of specific
intervention features (e.g., Guastaferro & Collins, 2019), and researchers and developers can work
to design effective interventions by following best practices in health communication and message
development research (e.g., Noar, 2006). The use of formative research, for example, which can
include gathering information from the target audience to understand their experiences with the
behaviors or actions, their preferences in messages, and the channels useful for reaching them, can
aid in the development of successful interventions (Noar, 2006).
When developing technology-based health communication interventions, researchers may
use a combination of formative research techniques, including pretesting (e.g., eliciting feedback
from participants during the message development process), piloting (e.g., a small-scale test that
includes the delivery of the messages on the platform intended for use), and/or usability testing
(e.g., gathering feedback on the technology and the system from potential participants or target
audience members). Such feedback differs in terms of the information it provides to developers.
For example, pretesting can influence the content researchers’ plan to include in an intervention,
whereas usability testing may instead influence features built into the platform, such as the level
of interactivity. In this chapter, I will discuss some of the more common methods for conducting
such research.
Another important consideration for successful interventions is the use of theory (Noar, 2006).
Previous research has noted that theory use in general may be lacking in technology-based interven-
tions (e.g., Bull & Ezeanochie, 2016). However, more recent work has found increased discussion
of theory in intervention studies (e.g., Yang & Van Stee, 2019). Most apparent may be psychosocial
constructs related to behavior change theory, which are used during intervention development
(Bull & Ezeanochie, 2016). Such theories can provide information about when and how a partici-
pant may be encouraged to engage in a behavior. An example of a behavior change theory that could
inform an intervention’s development is stages of change, which comes from the transtheoretical
model; this framework describes how an individual will progress through a series of stages (e.g., pre-
contemplation, contemplation) before changing a behavior (Prochaska & Norcross, 2001). I will not

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go into all the different theories that could inform intervention development in this chapter; other
work describes in detail various health behavior theories and their related constructs (e.g., Glanz
et al., 2015) that may be relevant to intervention development. I will instead highlight work that has
attempted to incorporate different theories to further technology-based health promotion, disease
prevention, and treatment efforts.
As research into technology-based interventions has continued to grow, enough evidence has
accumulated that researchers can conduct work looking at trends across studies. Meta-analyses, sys-
tematic reviews, and scoping reviews have all been conducted in an attempt to further describe the
effects of such interventions and consider the mechanisms through which interventions may have an
effect. Meta-analyses are quantitative research syntheses that look at effect sizes across studies. Sys-
tematic reviews are assessments that use a predetermined set of criteria and a methodical process to
gather studies that are included in an examination of a line of research. Scoping reviews are another
type of research synthesis that aims to look at the research on a specific topic and identify opportuni-
ties and gaps in the research; they differ from systematic reviews in that they have a broader scope and
less restrictive inclusion criteria (see Munn et al., 2018, for a more detailed discussion on differences
between a systematic and scoping review).
In the next section, I will discuss the findings of some of the meta-analyses, systematic reviews,
and scoping reviews conducted related to the use of technology for health promotion, disease pre-
vention, and treatment efforts. I draw heavily from these reviews, considering the findings across
studies to point out similarities and differences in results, as well as highlighting limitations of the
research.

Effectiveness of Technology-Based Interventions

Systematic reviews and meta-analyses of technology-based interventions for health promotion
and/or disease prevention have found evidence of efficacy, often noting small to moderate effects
(e.g., Marcolino et al., 2018; Seiler et al., 2017; Yang & Van Stee, 2019). In their meta-analysis of
64 studies, Yang and Van Stee (2019) noted that mHealth interventions were more effective than
comparison interventions or control groups, with small but significant effect sizes (d = .31). In a
meta-analysis of JITAIs, a type of intervention that provides tailored support at specific time points,
researchers found that across the 33 empirical studies they assessed, interventions had moderate to
large effects when compared to control groups or non-JITAI interventions (Wang & Miller, 2020).
In a systematic review of systematic reviews of mHealth interventions, Marcolino et al. (2018)
found mHealth to have effects in a number of topic areas, such as in chronic disease management,
HIV viral loads, and attendance and adherence rates to certain treatments. No effects were evident
on chemotherapy-related symptoms through interventions that included symptom self-report and
suggestions for self-care. Related research that looked at eHealth interventions (including Internet,
computers, mobile, and telehealth) delivered in school-based settings found small effects with inter-
ventions that addressed physical activity, screen time, and fruit and vegetable intake; however, effects
did not sustain over time when follow-up assessments were available (Champion et al., 2019).
Although researchers have found positive effects of technology-based interventions, it should
be noted that it is common for authors to mention limitations to their reviews and meta-­analyses
based on the quality of data available. For example, Marcolino et al. (2018) noted that of the
23 systematic reviews they analyzed, ten were rated as “low-quality,” seven as “moderate quality,” and
only six were rated as “high quality” (see Marcolino et al., 2018 for more discussion of how to assess
study quality in systematic reviews). These authors had to conclude that there is limited evidence of
efficacy in mHealth interventions. This was due in part to the mixed nature of results (i.e., finding
positive effects in some content areas and not in others), as well as the methodological limitations of
the original research.

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Effects for eHealth interventions are also evident in specific target audiences or health issues.
For example, Seiler et al. (2017) found that eHealth interventions were effective for managing
cancer-related fatigue. Hutchesson et al. (2015) reported that eHealth interventions could be useful
as a treatment option for obesity in some ways, but evidence was insufficient in terms of effects of
eHealth interventions for weight loss maintenance or preventing weight gain. Bennett et al. (2020)
determined eHealth interventions could improve depression, anxiety, alcohol-related problems,
and general mental health in a review and meta-analysis of how eHealth is used in psychotherapy,
although they did note mixed effects when comparing certain approach types (i.e., guided versus
unguided interventions).
Such similarities and differences also occur when examining specific technology channels of
intervention delivery. A systematic review and meta-analysis of text message interventions for
physical activity found that such interventions led to greater physical activity (i.e., increased post-
intervention steps per day; Smith et al., 2020). In a review that looked at randomized controlled
trials and quasi-experimental studies of text messaging to improve anti-tuberculosis treatment,
researchers found that mobile messages led to a small increase in treatment success over the care
that patients would normally receive (i.e., “standard of care”; Gashu et al., 2020). In another review
and meta-analysis of randomized controlled trails, researchers found that text message interventions
did significantly improve adherence to medication among adults with chronic diseases (Thakkar
et al., 2016).
In part, some of the differences found in such reviews and meta-analyses can likely be attributed
to differences in the interventions themselves. Marcolino et al.’s (2018) review noted that a variety
of intervention types were used, with text messaging interventions being the most frequent. They
also reported, however, that text messaging was used for a variety of purposes, such as for a reminder
or for instruction. Focusing just upon the channel of text messaging and the content area of sexual
health, for example, Willoughby and Muldrow (2017) described different types of text message
interventions. Some sexual health text message-based interventions were user driven, requiring the
user to send a text either to a person (e.g., Willoughby, 2015) or an automated system (e.g., Levine
et al., 2008) to receive information on a specific topic. Alternatively, there were interventions that
sent push messages to people who had signed up to receive messages that provided sexual health
information on a regular basis (e.g., Sheoran et al., 2014). Even in just this single channel and topic
example, one can see how interventions may differ in terms of their make-up, intervention offerings,
and level of engagement experienced by users.
Overall, the meta-analyses and systematic reviews seem to highlight that eHealth and mHealth
interventions can be effective at influencing key outcomes, but more work is needed to further
differentiate the types of technologies and uses of these technologies as they relate to interven-
tion effectiveness. In Yang and Van Stee’s (2019) meta-analysis, which they believed to be “the
most comprehensive meta-analysis to date that examined the overall effectiveness of mHealth inter-
ventions across health topics” and “the first study that statistically tested moderators” (n.p.), the
researchers noted small effects of mHealth interventions, with theory, engagement, intervention
channel, and follow-up length moderating effects. In terms of channel, for example, the use of
mobile phones with another type of media led to interventions with stronger effect sizes than inter-
ventions that used mobile phones only. Additionally, the use of text messaging when combined with
a mobile app produced stronger effect sizes than interventions that used only text messaging or only
mobile apps. The authors examined eight types of engagement, finding that changing the personal
environment (e.g., including soothing sounds for mediation) and reinforcement tracking (e.g., the
app providing reinforcement based on user data) were moderators that led to significantly stronger
intervention effects.
Such research highlights the fact that technology is a platform for dissemination that can be lever-
aged for greater effects depending on the characteristics included in the intervention and intervention

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content. Indeed, a recent National Academies of Science, Engineering and Medicine report that
focused on the epidemic of sexually transmitted infections (STIs) in the United States made a similar
point, noting that “technology itself is just a platform/tool and therefore not problematic or beneficial, but how
technologies are used is what affects STI acquisition, prevention, and control” (National Academies of
Sciences, Engineering, and Medicine, 2021, p. 285, emphasis in the original). To further explore this
idea, in the next section I will talk about the elements of technology-based interventions that have
been found to influence intervention effectiveness.

Elements of Influencing Intervention Effectiveness

Technology-based health promotion, disease prevention, and treatment interventions offer benefits
for health communication efforts, often due to the interactive nature of their platforms and the
functionalities that can be built into the technology. Noar and Harrington (2012) noted that the
advantages of eHealth include anonymity, automated data collection, appeal, convenience, flexibil-
ity, increased access to information, interactivity, the use of web-based delivery systems, low cost,
multimedia platforms, networkability, simulated environments, and tailoring potential. Although
such affordances can be considered advantages of the technology, research has not consistently found
that certain affordances to lead to improved health outcomes. Chib and Lin (2018) noted in their
systematic review of mobile health apps that evidence of mechanisms that may lead to mobile health
effects was sparse. Additionally, Bull (2018) noted,

another challenge we face in digital health is not understanding whether and how specific
elements of effective programs work. Too often our research explores the outcomes of
interventions in their entirety without critical considerations of whether and how people
engage with specific program elements and whether increased engagement or the program
results in greater efficacy.
(p. 18)

Tailoring
In some areas, researchers looking at what may moderate the effectiveness of mobile interventions
may find confusing or conflicting results across studies. Take, for example, the area of text message-
based health interventions and tailoring. In a meta-analysis of text message-based health promotion
interventions, Head et al. (2013) found that message tailoring and personalization were associated
with greater intervention efficacy. Alternatively, a meta-analysis of text message interventions that
were focused on preventative health behaviors did not find differences in efficacy based on tailor-
ing, targeting, or personalization of messages (Armanasco et al., 2017). In the area of physical
activity promotion, tailored messages were associated with nonsignificantly greater effect sizes than
non-tailored interventions (Smith et al., 2020). In a review of tailored text message interventions
focused on type 2 diabetes, one meta-analysis found moderate, positive, and significant effects of
such interventions on HbA1C values (i.e., a measure of how well controlled blood sugar has been
for about three months; Sahin et al., 2019). The discrepancies in findings across these reviews and
meta-analyses of the role of tailoring in intervention effectiveness may be due in part to inadequate
research designs in the original studies. Researchers have noted concerns related to variance in
methods and selection and randomization bias (Taylor et al., 2019). Others have called for addi-
tional extensive, well-controlled studies with stronger designs to aid in text message intervention
meta-analysis interpretations (Smith et al., 2020). To obtain clearer, more definitive conclusions, an
option would be to include in reviews and meta-analyses only those studies with well-controlled
and well-operationalized designs.

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In addition to possible limitations based on the research used to inform meta-analysis results and
interpretations, interventions likely differ in terms of their application of tailoring. In a systematic
review of tailoring in mobile health interventions that used experimental or quasi-experimental
designs, Liu (2018) found that interventions tended to most often tailor to health habits specific to
the topic, risk factors, and behavior theory constructs. Liu noted that the transtheoretical model
and/or stages of change were theories often used in the tailoring of messages. However, it is often
unclear exactly how such theories are being used to inform tailoring, and research in health commu-
nication more generally has pointed to the need to tailor not only based on health behavior theory
but on message design theory as well (Noar et al., 2009). It is possible that by focusing primarily on
health behavior theory, intervention developers are missing other informative theories upon which
to base their work. Indeed, although not specific to tailoring, in their meta-analysis of 64 mobile
health intervention studies, Yang and Van Stee (2019) found that mHealth interventions based on a
combination of cognitive and behavioral theories had stronger effect sizes than interventions using
only one type of theory (cognitive or behavioral) or no theory.
In addition to the limitations posed by the type of theories used in tailoring efforts, discrepancies
in findings about the effectiveness of tailored interventions may also occur based on the methods
through which an intervention is tailored and the timing of tailored content. In Liu’s (2018) review,
mobile interventions often appeared to use baseline assessments for tailoring efforts instead of further
using the ability of the digital platform to collect data and dynamically tailor intervention content.
Dynamic tailoring involves providing interventions with active assessments of constructs that can
provide the basis for updated tailored feedback on an ongoing basis (Krebs et al., 2010). Dynamically
tailored interventions have increased efficacy over time when compared to tailored interventions
based on a single assessment (Krebs et al., 2010). Similarly, the results of Wang and Miller’s (2020)
meta-analysis that looked at JITAIs, which have similarities to dynamically tailored interventions due
to the adaptive nature of the intervention based on participant feedback, showed that interventions
that were both tailored based on an initial, one-time trait assessment and included tailored feedback
that varied based on state (i.e., something an individual is experiencing at a certain point in time)
had a stronger effect. This finding indicates the importance of tailoring content appropriately for the
goals of the intervention, such as whether key outcomes vary and need to be addressed at specific
time points, to achieve maximum effectiveness.

Interactivity
Interactivity can be thought of as the attributes in a mediated environment that allow for reciprocal
communication (Bucy & Tao, 2007). Lustria (2007) found that interactivity can influence compre-
hension and attitudes toward a health website. A meta-analysis on web interactivity (not focused
solely on health) that included 63 studies found that interactivity was significantly associated with
user enjoyment, positive attitudes, and behavioral intentions (Yang & Shen, 2018). In the topic area
of sexual health, Swanton et al. (2015) found through their meta-analysis that technology-based
interventions with increased interactive components led to significant effects. However, another
meta-analysis that examined technology-based interventions for sexual health did not find an impact
of interactivity level on STIs and unintended pregnancies (Widman et al., 2018).
These discrepancies in findings could be due in part to varying conceptualizations of interactivity
(see Bucy & Tao, 2007, for a discussion on differing explications of interactivity). In a meta-analysis
of web interactivity, Yang and Shen (2018) found differences based on the type of interactivity, with
modality interactivity (i.e., the tools available to interact with information through the interface;
Oh & Sundar, 2015) more effective than source interactivity (i.e., how the technology enables users
to be a primary source of information or information gatekeeper; Sundar et al., 2012) or message
interactivity (i.e., the extent available to which a user can reciprocally communicate with the system;

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Oh & Sundar, 2015). Additionally, the researchers found that perceived interactivity was significantly
more effective than objective interactivity (Yang & Shen, 2018). Also focusing on sexual health and
digital technologies, Willoughby and L’Engle (2015) found that adolescents’ perceived interactivity
of a sexual health text message service was associated with increased service use and more positive
attitudes toward the service, although health effects were not assessed.
The discrepancies noted here highlight a few things. First, the research on technology-based
health promotion, disease management, and treatment interventions would benefit from clear dis-
cussion of the constructs being assessed. This would allow researchers to more effectively compare
across studies and examine effects. Some work has proposed guidelines related to the reporting
of interventions, highlighting the information about content, context, and technical features that
should be included (see Agarwal et al., 2016). Second, mechanisms that lead to effects are less well
studied and understood. Research could benefit from examining these mechanisms so that develop-
ers can focus on incorporating such elements into intervention design (see future directions section
in this chapter for additional discussion). Third, the fact that certain elements (e.g., tailoring, interac-
tivity) can be effective in certain situations again highlights the notion that technology itself is a tool
through which intervention developers can deliver potentially effective content to target audiences.
As such, work needs to continue to focus on crafting effective intervention content, but it could also
benefit from taking the affordances of the technology into consideration so that practitioners can
leverage the offerings of the technology to increase intervention efficacy.

Relevant Principles of Effective Health Communication

Although the previous sections have discussed some of the elements of technology-based health
interventions that may enhance appeal and effectiveness, research from health communication more
generally also can inform technology-based health promotion and disease prevention and treatment
efforts. For example, Noar (2006) noted that the use of formative research and theory to inform
campaign efforts could lead to increased campaign success. The same principles of formative research
can apply to developing technology-based interventions. In the following section, I will briefly dis-
cuss formative research and theory as they relate to technology-based health interventions.

Formative Research Use in Technology-Based Health Intervention

Development
Formative research can be helpful for technology-based intervention development in a number of
ways, influencing both intervention content and delivery. Pretesting is a component of formative
research that can inform intervention content development, but it is one that Willoughby and Furb-
erg (2015) found to be lacking in a systematic review of text message-based health behavior change
interventions. Indeed, the authors found that pretesting was rarely described in manuscripts, and in
the few articles that did discuss pretesting, most methods included qualitative data collection through
either focus groups or in-depth interviews. The authors could not determine whether description
of pretesting was simply not presented or pretesting of intervention content was not taking place.
However, they recommended four things: (a) Content developers should use and modify existing
and tested content when possible, (b) messages should be pretested with members of the target audi-
ence, (c) pilot tests should be conducted to provide feedback from potential audience members on
messages and message timing, and (d) the results of these pretests and pilot tests should be reported in
stand-alone articles or manuscripts describing intervention effects, with intervention content shared
when possible.1
Although Willoughby and Furberg (2015) noted in their systematic review that traditional meth-
ods tended to be used in developing text message-based interventions, some research has explored

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alternate methods for pretesting content. Levine et al. (2011) conducted focus groups, synchro-
nously and asynchronously, over social media for the development of an Internet intervention. The
researchers found that asynchronous focus groups allowed for greater engagement with populations
that were hard to reach. Willoughby and Brickman (2020) proposed an ecological momentary
assessment-style mobile approach to pretesting mHealth intervention content. (Ecological momen-
tary assessment is a method of surveying participants in near real time through repeated assessments;
Shiffman et al., 2008.) The authors used a method to pretest text message intervention content
in which participants received intervention content multiple times a day on their mobile devices,
answering short questions about each message. The method was seen as acceptable to participants,
and most participants preferred the method of assessing multiple messages throughout the day over
the course of a week to completing a traditional long-form survey.
Formative research to inform content development is not the only aspect of intervention design
that tends to rely on more traditional methods. Indeed, Maramba et al.’s (2019) scoping review of
eHealth usability testing found that 105 of the 133 articles they examined reported the use of ques-
tionnaires. The authors concluded that such methods, while common, do not offer clear direction
in terms of how changes may be made to improve technology-based intervention efforts. Qualita-
tive methods could offer feedback that would be useful in terms of modifications of interventions,
but these methods were relatively rare. Specifically, only 13 of the 133 articles used focus groups in
usability testing and only 37 of the 133 indicated the use of interviews; 47 of the 133 articles noted
the use of a think-aloud technique. Maramba et al. concluded that additional research was needed
to help refine which methods work best for usability testing for different applications and target
audiences.

Theory Use in Technology-Based Health Interventions

As mentioned, Yang and Van Stee’s (2019) meta-analysis showed that the use of behavioral and cog-
nitive theory in combination was associated with increased effects in mobile health interventions.
This finding not only supports the importance of the use of theory in technology-based health
interventions but also emphasizes the importance of using certain types of theory. Yang and Van
Stee found that 47 of 64 mobile interventions included at least one of the following theories: social
cognitive theory, the transtheoretical model, self-determination theory, the health belief model,
the theory of reasoned action or the related theory of planned behavior, and self-regulation theory.
Although this review highlights the notion that theory may be included in some form in the devel-
opment and/or assessment of mHealth interventions, previous research has found the inclusion of
theory to be rare. For example, in a review of published mHealth manuscripts, Bull and Ezeanochie
(2016) found that only 10% of manuscripts reported using theory in their intervention design,
implementation, or analysis. Research in mobile health in specific topic areas, such as diabetes and
other chronic diseases, has also noted a lack of theoretical grounding (Bashi et al., 2018; Sahin et al.,
2019). Such differences may be due to changes over time in the use and description of theory in
interventions and/or differences in sampling strategy.
Although it appears that health behavior theory is being used to inform some mobile health
efforts, more could be done to incorporate other kinds of theory, particularly communication
theories, into technology-based health promotion efforts. Bull and Ezeanochie (2016) proposed
an integrated theory of mHealth that combined health communication, social networking, and
psychosocial theories and constructs. The framework begins with access and engagement. Access
considerations take into account the value added by such interventions and whom they are reaching.
Engagement includes the use of theories and frameworks that can enhance user involvement (e.g.,
message framing, the elaboration likelihood model) and that should be considered at intervention
development. The framework then specifies concepts related to behavior change that are worthy of

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consideration in intervention development, such as social support; it also suggests attention be paid
to social network sharing because networks can aid in intervention adoption and scale.
Related, Patel and Arya (2017) proposed the BUS framework, combining principles from behav-
ior change theories, user-centered design, and social marketing in the development of health apps. The
authors concluded that the use of the BUS framework could help to most effectively use technology
for behavior change and improving people’s health. In a discussion of JITAIs, Nahum-Shani et al.
(2018) noted that one limitation of this work is the lack of a dynamic theories. They also argued
that reliance on disciplinary silos is a limitation that affects intervention development. The authors
encouraged additional cross-disciplinary collaborations to aid in the application of appropriate theo-
ries when building JITAIs.

Disparities and Technology-Based Health Communication

It is important to note that although technology-based health promotion, disease prevention, and
treatment interventions may have positive effects and may reach a wide audience, disparities and
inequities remain (see Chapters 24 and 29, this volume). In fact, in some cases they may be exac-
erbated through technology use. One issue relates to access to technology. In a secondary analysis
of data from a study on the impact of using smartphones to demonstrate tuberculosis medication
adherence, Bommakanti et al. (2020) examined whether such mHealth interventions could perpetu-
ate health disparities based on smartphone ownership inequalities. They found that about a third of
possible target audience members did not have a smartphone prior to the initial study; these indi-
viduals were older, more likely to be male, and had lower incomes and less education. This finding
is supported by statistics from the Pew Research Center (2019), which found that although 96% of
Americans owned cellphones, only 81% owned smartphones, and ownership was lower for older
adults, those living in rural areas, and those with lower incomes and less education. Such data high-
light the importance of the discussion of the digital divide and how mHealth interventions might
exclude a substantial portion of their target population.
The digital divide is traditionally considered the gap between people who have access to commu-
nication technology and those who do not, but work has also shifted to take into account whether
people have the necessary skills and competencies to navigate digital technology (Van Dijk, 2017).
In addition to physical access, which may differ based on demographics, the Pew Research Center
found that digital knowledge varies by education level and age, with people who have more educa-
tion or who are younger having greater digital knowledge than people who have less education or
who are older (Vogels & Anderson, 2019). Smith and Magnani (2019) noted that as the use of tech-
nology for health continues to proliferate, limitations on digital health literacy might further exac-
erbate disparities. The authors suggest a universal precautions-based approach to designing eHealth
efforts to assist with accessibility for all populations.
Although limitations and the potential of technology-based health interventions to further dis-
parities are important to note, research has also examined whether technology can be useful in help-
ing to address health disparities. For example, noting that Latina breast cancer patients report worse
symptom burden and health-related quality of life than non-Hispanic White patients, Iacoelli et al.
(2018) developed an intervention to increase health literacy and, in turn, quality of life for these
women. The development process used a community-centered approach, which the researchers
recommended for the development of technology-based interventions for underserved populations.
Ginossar and Nelson’s (2010) intervention development work conducted with low-income Hispanic
communities also highlights how community-based participatory research can be useful for creating
eHealth interventions that can reduce disparities in technology access and health information. Work
in the area of sexual health has found that an mHealth intervention designed to improve media lit-
eracy, STI/pregnancy prevention, and sexual communication had a positive impact on sexual health

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outcomes among older adolescents attending community college, a population that traditionally has
been difficult to reach (Scull et al., 2018). Such efforts highlight the role that technology can play in
addressing potential disparities, either by targeting specific populations or specific skills. However,
digital interventions have been criticized because there is still considerable room for improvement
in the way their content and delivery could be designed to better address disparities (Bull, 2018).

Additional Limitations Related to Technology-Based Health

Interventions
Some of the limitations of technology-based health promotion, disease management, and treatment
interventions have been discussed throughout the chapter, such as the lack of theoretically grounded
work or the emphasis on only health behavior theory (e.g., Bull & Ezeanochie, 2016), the difficulties
with disparities that technology-based interventions can potentially exacerbate (e.g., Bommakanti
et al., 2020), and the methodological limitations of technology-based intervention research (e.g.,
Marcolino et al., 2018). However, there are a number of other potential limitations, many of which
relate to some of the points made previously in the chapter.
For example, an additional limitation in the field of technology-based health interventions
includes the proliferation of technology that is developed without components relevant to strong
intervention design. In a review of apps related to sexual education, Kalke et al. (2018) found that
very few could be considered comprehensive in terms of the sexual education content included, and
the app designs were lacking important affordances (e.g., they had limited interactive components).
Such research highlights potential problems on the development side but also has impacts related to
research. For example, the lack of research specifically examining how certain design features may
influence intervention effectiveness means that it is difficult to assess the mechanisms through which
interventions may be made most effective.

Future Directions for Research and Practice

The limitations to technology-based interventions for health promotion, disease management, and
treatment can help us recognize some of the areas in which the field may continue to advance. It
would be beneficial for researchers to further describe the use of theory and formative research in
intervention development, as well as operationalizing constructs assessed in research so that clear and
accurate comparisons across studies and interventions can be made. Additionally, when describing
the development of interventions, more explicit information about the functionalities and affor-
dances built into the technological innovations would be helpful (e.g., how the creators concep-
tualized and applied interactivity to their work). This can help us move from finding that such
interventions can be efficacious (e.g., Yang & Van Stee, 2019) to understanding how to make inter-
ventions even more successful.
Future work would also benefit from more focus on the mechanisms that may influence efficacy
and effectiveness of interventions. An area of research that has developed in this regard is the mul-
tiphase optimization strategy, or MOST, which “inserts a phase of optimization of an intervention
prior to its [randomized controlled trial] evaluation for effectiveness. Optimization is the process
through which an intervention is identified that produces the best expected outcome obtainable
within key constraints” (Guastaferro & Collins, 2019, p. S128). Spring et al. (2020) used MOST to
create a technology-based weight loss intervention, using the method to help inform intervention
development and remove components (i.e., additional coaching calls) that were expensive but did
not increase weight loss. Further understanding which elements of a technology-based intervention
can lead to stronger effects can help us create more cost-effective interventions and interventions that
lead to greater effects by removing potentially unnecessary components.

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In addition to examining different intervention design and effectiveness assessment strategies,

future research could continue to focus on further leveraging affordances of technology to create
more effective interventions. The greater effectiveness found in JITAIs highlights the potential ben-
efits of tailoring intervention information based on participant feedback. Research has found that
technology, including mobile devices, can be useful for collecting data. Lim et al. (2010) found that
technology-based data collection was preferred by most participants, with text messaging diaries
less likely to be submitted late, although they were sometimes incomplete. Other research has also
found that text message-based surveys are seen as acceptable (Willoughby et al., 2018), although
the authors noted that the surveys needed to be kept short and had limitations that some other
methods may not. These included possible limitations related to platform capabilities for collecting
survey responses. Knowledge of such acceptability further reinforces the potential for interventions
to require participants to provide data that can then be used to tailor intervention content. Nahum-
Shani et al. (2018), in a review of JITAIs, described how such interventions could be tailored based
not only on participant-inputted information but also on passive assessments, which require little or
no information from participants. An example of passive assessment might be the use of location-
based data to tailor intervention content, although there may be ethical concerns to consider with
this practice (see Chapter 34, this volume). Further advancing our interventions that tailor to indi-
vidual needs, taking into account the dynamic nature of emotions, cognitions, and human behavior,
would be beneficial.
As technology continues to evolve, so do opportunities for technology-based health promo-
tion, disease prevention, and treatment interventions. Although these interventions have been found
to have impacts on health, the specific features that lead to the greatest effects are not yet clearly
established. The field can continue to benefit by focusing on the elements that lead to interven-
tion success in both development and implementation so that we can utilize technology to benefit
population health.

Note
1. Some journals may be less interested in publishing stand-alone pretesting articles, so consideration of specific
outlets is warranted. Authors may also want to look to other methods for sharing such information, such as
through the use of online supplementary materials as part of the push for more open communication science
practices.

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 26
THE ROLE OF TECHNOLOGY IN
HEALTH COMMUNICATION
Trends and Trajectories
Ronald E. Rice, S. Shyam Sundar, and Hyang-Sook Kim

People are using online media and a diverse host of other Internet-based technologies for their
health communication needs at an unprecedented rate, a reality that has been in the making for
more than 20 years and has been exacerbated during the COVID-19 crisis. The latest Health
Information National Trends Survey (HINTS, 2019) reports that, within the prior 12 months,
71.9% of U.S. adults used the Internet to find health-related information for themselves, 47.4%
have one or more apps related to health and wellness on their tablet or smartphone, 26.7% have
used an electronic wearable device, 14.4% shared health information on social networking sites,
36.7% watched a health-related video on YouTube, and 36.5% have sent a text message to or
received a text message from a doctor or other healthcare professional. This chapter provides
an overview of significant trends and trajectories for studying digital and online health commu-
nication technology. Because of the vast literature in this area, we can only provide a snapshot
based on mostly very recent publications that largely emphasize these topics. The reviews and
studies in this chapter are characterized by a strongly social science and scientific perspective and
thus provide little by way of interpretive or critical-cultural studies. Other sources, however,
such as Neto and Flynn’s (2019) edited comprehensive review of information and communica-
tion technologies and health in the Brazilian context, do apply qualitative methods and critical
perspectives.
Health communication technologies can be categorized in a variety of ways. The Medical
Futurist Institute (2020) discusses examples of health innovations, applications, and contribu-
tions of 3D printing, artificial intelligence, augmented reality, genomics, health sensors, medi-
cal robots, nanotechnological devices, social media and smartphones, and virtual reality. Risling
et al. (2017) categorize based on purpose: one-way discrete (reminders, announcements),
two-way discrete (assessment/Q&A, consultations), one-way ongoing (reference material),
and two-way ongoing (community building, knowledge sharing, engage/coordinate extended
healthcare team). Our review of the literature suggests that there are three broad, overlapping
classes of health communication technologies—electronic media (or eHealth, the broadest of
the three, which focuses on traditional web-based technologies and more general institutional
and societal systems), mobile media (or mHealth, which relies on smartphones, tablets and their
apps), and ambient media (or aHealth, technologies such as conversational agents, wearables,
and games).

DOI: 10.4324/9781003043379-32 381

 Ronald E. Rice et al.

eHealth

Definitions and Uses

The widespread diffusion of computers and the Internet at the turn of the century led to the birth
of “eHealth,” which refers to “health services and information delivered or enhanced through the
Internet and related technologies” (Eysenbach, 2001, p. 2). Early definitions of eHealth have been
extended to include both platforms and user experiences of eHealth, “from interventions or services
such as apps, websites, online discussion groups to real-life medical data collection, for instance by
using wearables” (Boogerd et al., 2015, p. 2). A recent taxonomy includes three areas of utility of
eHealth: user behavior (i.e., monitor, track, and inform health), interaction affordance (i.e., interac-
tion between and among patients and healthcare providers), and big data analytics (i.e., collecting,
managing, and using health data; Shaw et al., 2017). Haldar et al. (2020) synthesized 60 definitions of
eHealth found in the literature into three levels (conceptual, empirical, and indicator) and 14 themes
(e.g., using mobile, digital/electronic approaches; enhancing healthcare; organizing data and activi-
ties), emphasizing that eHealth involves interactions between the technical and the social.
A major focus of eHealth is to increase patient empowerment. In addition to tailoring health
media by adapting message content (see later), allowing users to customize a health site’s mode
(audiovisual, textual, visual) can improve perceptions of control, relevance, engagement, and cogni-
tive load (Nguyen et al., 2020). Akeel and Mundy (2019) identified five categories of empowering
eHealth technologies: personalized, for self-directed patients; assistive, for confident patients; par-
ticipative, for engaged patients; knowledge-based, for informed patients; and access, for connected
patients.
The variety of technologies, ranging from activity trackers and interactive voice response features
to smartphone or tablet apps, social media, and text messaging (Nouri et al., 2020), provides a range
of benefits related to self-monitoring, medication management, symptom tracking, coping skills,
and appointment notifications (Inside Digitalhealth, 2020). A meta-analysis of randomized con-
trolled trials revealed that intervention programs featuring various health communication technolo-
gies (e.g., websites, smartphones, wearable technology) improved sedentary behavior in the short
term (Stephenson et al., 2017). As many national populations are aging, technological solutions such
as video consultations can help overcome challenges by increasing cost-benefit ratios and providing
greater choice to both patients and providers (ECDC, 2019). For aging populations with mobility
restrictions, eHealth holds the promise of maintaining their independence (Verloo et al., 2020), with
their informal caregivers prioritizing daily living support and fall and location detection and profes-
sional caregivers valuing integration of systems among all stakeholders.

Health Websites
Health websites are an online platform providing a variety of health resources. However, users
should be skeptical. For example, an evaluation of 197 websites providing information for parents
of preterm infants found moderate scores for reliability, treatment, and overall quality, with fewer
than an eighth having Health on Net code approval (Dol et al., 2019). Papa et al. (2020) analyzed
characteristics of 138 apps and 86 websites for informal caregivers of older people in five European
countries and found that only 17% were explicitly oriented toward these caregivers, with focus
groups indicating very low uptake because of low awareness of these resources, low skills in using
the apps and sites, and concerns about content reliability.
A central question about web-based mental health therapies is the extent to which they can
replicate face-to-face ones. There are certainly some benefits, such as accessibility, scheduling, and
cost. However, not much research has considered their use for routine mental healthcare, focusing

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more on health professionals’ assessments of barriers and facilitators. Davies et al.’s (2020) systematic
review considered six factors: uses and types of therapy, organizational and system factors, patient
factors, health professional factors, therapeutic relationships, and models of care (e.g., alone or in
combination, self-directed or guided, monitoring, and support). They concluded that appropriate
and successful provision of routine mental health therapies should be part of an integrative support-
ive system, including work practices, technology, confidentiality, and managerial support.

Social Media Sites

The last ten years have seen a phenomenal increase in the use social media such as Twitter, Face-
book, Instagram, and YouTube, expanding the forms of health information and support available
to the public (see Chapter 21, this volume). The widespread diffusion of social media across broad
swaths of the population throughout the world has attracted health providers as well, not only to
disseminate information but also to implement interventions for improving population health (see
Huo & Turner, 2019; Shi et al., 2018; and Chapter 25, this volume, for reviews). Moorhead et al.
(2013) reviewed six major benefits of social media use for health communication, including tailored
information, public health surveillance, and potential to influence health policy. However, they also
noted 12 limitations having to do with information overload and credibility, loss of individual pri-
vacy, and potential for negative health behaviors. Indeed, toward the latter part of the last decade, and
especially during the COVID-19 pandemic, social media have suffered a credibility crisis with the
scourge of misinformation about a number of contentious health issues such as vaccination efficacy
and infection trajectory (see Chapter 22, this volume). This challenge has prompted commentar-
ies and editorials in leading medical journals (e.g., Chou et al., 2018; Trethewey, 2020) that urged
medical professionals to be vigilant and proactive in disseminating credible health information, fact-
checking social media posts, strategically infiltrating online echo chambers, and launching counter-
campaigns. Vraga and Bode (2018) have shown encouraging experimental findings suggesting that
corrective information produced by Facebook algorithms, and by other users of the platform, is
quite effective in reducing health misperceptions, even among individuals with high belief in con-
spiracy theories.
YouTube is a source of innumerable videos on health topics, whether created by the general pub-
lic, those with specific health conditions, professionals, vendors, or institutions and agencies. Those
videos also provide vast resources for health research, including assessments of the quality of their
health content and users’ comments about those videos. An evaluation of such videos for type 2 dia-
betes self-management (Gimenez-Perez et al., 2020) revealed that fewer than half related to AADE7
Self-Care Behaviors™ (a standard set of seven patient-centered self-care diabetes self-management
behaviors), and misleading and alternative medicine information was frequent. Julian et al. (2020)
assessed the top 111 YouTube videos about sunscreen. There were slightly more recommendations
in those provided by healthcare providers than by end users, with a quarter of them negative about
sunscreen due to concerns about chemical ingredients; in general, the videos did not cover key
recommendations.

mHealth

Definition and Uses

“Mobile health (mHealth) technology is defined as wireless devices and sensors intended to be worn,
carried, or accessed by patients or health care providers for monitoring health status or improving
health outcomes” (Choi et al., 2020, p. 939). Mobile phones and mHealth apps blur the bounda-
ries between mass and interpersonal communication and facilitate network interactions, sometimes

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combining both individual use with community sharing or participation or with computer-based
interventions and interaction (Chib & Lin, 2018).
Because smartphones combine mobility, computing power, data storage, cameras, microphone,
GPS, sensors, and connectivity, they provide an integrated platform for health communication
applications. Smartphone apps with sensors can now assess neurocognitive conditions, provid-
ing useful information to both patients and care providers (Templeton et al., 2020). They can
somewhat compensate for the absence of healthcare services in some areas. For example, an app
(Peek Community Screening app) with clinical algorithms was used by community volunteers in
Kenya to identify and refer patients with eye problems (Rono et al., 2020). Analyzing the data of
cancer patients and survivors from the Health Information National Trends Survey 4, Cycle 4 in
2014, Jiang et al. (2017) reported that the adoption of mobile applications for self-management
among cancer survivors was relatively low compared to the general adult population, although
the perceived benefits of using such technology were evident, especially in rural areas. A review
of 17 studies revealed that various mobile technologies, from text messaging to patient portals to
smartphone apps, have been widely used to monitor cancer patient status after treatment (Osborn
et al., 2020). Guzman-Parra et al.’s (2020) study of 1,086 dyads of patients with dementia and
their caregivers analyzed how the participants use smartphones, tablets, or apps to support their
memory.

Mobile Apps and Features

By mid-2017, there were more than 325,000 downloadable mHealth apps, all “part of the digital
health ecosystem” (Magrabi et al., 2019, p. 4). mHealth apps can provide a wide range of uses and
features, including exercise instruction or modeling, performance feedback, goal setting, planning,
social support, self-monitoring, support for physical activity, weight assessment, support for healthy
eating, motivational strategies, and personalized feedback. In general, mHealth apps emphasize
information, advice, communication, measurement, monitoring, and motivation.
Scholars have documented the benefits of mHealth across a wide range of health issues, includ-
ing cancer (e.g., Osborn et al., 2020), mental health (e.g., Firth et al., 2017), pregnancy (e.g., Feroz
et al., 2017), and physical activity (e.g., Mateo et al., 2015). Qudah and Luetsch (2019) reviewed
37 articles about patient perceptions of mobile communication with physicians, concluding that
patients were willing to adopt mobile technology to communicate with their physicians and that
doing so offered them autonomy in collaborative medical decision-making. However, they also
found resistance to active adoption of mobile technology among healthcare providers.
A review and content analysis of 243 smartphone apps for depression showed that about a
third were designed mainly to provide therapy and another third for psychoeducation, with
smaller percentages for medical assessment, multiple purposes, mood or depression trackers, and
positive affirmation (Shen et al., 2015). A synthesis of mHealth research focusing on diabetes and
hypertension self-management identified three main features or applications: patient self-man-
agement (reminder, data entry, feedback, education), clinical decision-making (interpretation
of measures, alerts for exceeding threshold values, appointment urgency), and shared decision-
making (sharing reports, communication for scheduling, exchanging support and answers) (Choi
et al., 2020). This review found generally positive results on health outcomes from mHealth
use (such as improvement in biomarkers and adherence). Analyzing the top 30 mobile health
and lifestyle apps (physical activity, diet, sleep) in the top two app stores, Antezana et al. (2020)
concluded that mobile health apps are not explicitly driven by behavior change techniques and
theory, although different but small percentages of behavioral control theories appear in different
categories of apps.

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mHealth Outcomes
mHealth can provide many health benefits. Traditional mHealth applications (e.g., text messaging or
voice messages via mobile phone) were most popular for antenatal care and postnatal care services
primarily aimed at educating pregnant and postpartum women (Feroz et al., 2017). Mobile apps can
promote physical activity associated with changes in body mass index (Mateo et al., 2015). García et
al.’s (2019) month-long study provided four daily text messages and requested self-reported health
measures, showing significant declines in self-reported depression. Complementing text with visual
appeals in a text messaging intervention for healthy eating by college students was associated posi-
tively with attitudes and intentions for both gain- and loss-framed text messages (Niu et al., 2020).
Just as mobile apps grow in deployment and adoption, newer technologies are incorporating
them as part of more integrated health technologies. For example, the 2020 Consumer Electronics
Show introduced several health-related devices that can hang on a neck lanyard and that combine
artificial intelligence (AI), microphone, and video, allowing for a wide array of benefits. Examples
include hearing aids that allow a hearing impaired person to identify who in a crowd is speaking,
baby breathing monitors that come in wearable fabric, and a smartphone app that tracks develop-
ment of a child and provides age-specific care advice (MobiHealthNews, 2020).
A user’s sense of connectedness through mHealth can enhance their feeling of control over health-
related decisions (e.g., Qudah & Luetsch, 2019), as well as amplify the effectiveness of mHealth.
Analyzing eight studies about mobile-based interventions for type 1 diabetic patients, Wang et al.
(2019) concluded that the interactive nature of mobile technology significantly decreased the level
of glycated hemoglobin by creating a sense of social connection. Lazard et al. (2020) found that
simple treatments that triggered the feeling of being part of a conversation (i.e., greeting message) or
belonging to a community (i.e., “tips and strategies based on people like you”; p. 139) significantly
increased social presence, trust in the apps, perceived usefulness, and user intention across three dif-
ferent health topics: healthy eating, physical activity, and tobacco use. As mobile health apps become
more sophisticated, they are likely to morph into a larger eHealth ecosystem of flexible, mobile, and
connected technologies.

aHealth
Whereas websites and mobile devices require users to purposively access health information and
services, the next generation of technologies promises better health by being present in the user’s
natural or mediated environments, as indicated by the growing use of conversational agents, health
wearables, and digital games for health communication. We call this ambient health (aHealth).

Conversational Agents
This past decade saw a dramatic increase in the use of conversational agents for health communica-
tion. Although prototypes for computer therapists have existed for several decades (Weizenbaum’s
ELIZA, 1966), they are now being deployed in the form of chatbots (Cameron et al., 2017) and
smart speakers or assistants (Motalebi et al., 2019). Physicians see chatbots as “surrogates” for non-
medical caregivers that “support, motivate and coach patients,” in addition to streamlining tasks
for the organization (Palanica et al., 2019, p. 1). Providing therapy in the form of a conversation,
albeit via a machine, appears to carry distinct advantages, not just in terms of cost but also health
outcomes. For example, Fitzpatrick et al. (2017) found that depression symptoms were significantly
lower among study participants who interacted with a text-based conversational chatbot (Woebot)
than participants provided the same information in eBook format. However, a review of chatbot use

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by Abd-Alrazaq et al. (2020) concluded that they can improve some mental health conditions (e.g.,
depression, stress) but not subjective psychological well-being. Chatbots providing social support
can be useful in everyday contexts as well. Motalebi et al. (2019) showed that random utterances of
“Hmm,” “Yeah,” “Go on,” and “I see” by a smart speaker can make users feel that the bot is listening
to them attentively and is thereby providing emotional support. Interviews with users of Replika
(https://replika.ai/), a companion chatbot, revealed six major themes of social support from chat-
bots: information (advice), emotion (trust, positive affect), companionship (loneliness), and appraisal
(introspection, skill building), negative experiences (uncanny valley, nonsensical or repetitive), and
no/not sure of impact (Ta et al., 2020), with companionship the most frequent theme. The literature
on social robots and digital assistants for health purposes is extensive but beyond the scope of this
chapter.

Health Wearables
Wearable health device adoption has grown over the past decade (Vogels, 2020), attracting attention
from health interventionists. By mid-2017, there were more than 340 consumer-wearable devices
(Choi et al., 2020). Sensor data (movement, location, height, body functions) can be combined
with self-reported data (awareness, physical, mental) (Pardamean et al., 2020). Uses of wearable
devices have evolved from fitness and obtaining self-information (the “quantified self ” movement;
Pardamean et al., 2020), to managing and monitoring one’s health, lifestyle, physical activities, and
mental health, and to broader use by groups and healthcare providers (Lorenzo, 2019). Passive sen-
sors (e.g., Internet of Things devices, smartphone location history, and physiology monitors) may be
combined with participant-provided input. However, consumer wearable devices may not have high
accuracy or validity (Pardamean et al., 2020).
For examples, the Ubiquitous Cognitive Assessment Tool (UbiCAT) was developed as an app in
a smartwatch to assess cognitive performance of patients in the field (Hafiz & Bardram, 2020). The
Remote Oral Behaviors Assessment System (ROBAS) links electronic toothbrushes and a smart-
phone to collect brushing data and provide feedback to users, such as changing settings or provid-
ing coaching (Shetty et al., 2020), showing promise in their ability to promote preventive health
actions. The prototype Wear-IT is a smartphone app that offers adaptive, low-burden, and personal-
ized intervention and monitoring, balancing real-time passive and active input (Brick et al., 2020).
A meta-analysis of randomized controlled trials of using wearable technology to provide objective
feedback about physical activity also revealed a positive effect on behavior (Braakhuis et al., 2019).

Health Games
Health games have now become a staple part of the “serious games” genre because individuals are
intrinsically motivated by their entertainment experience. Lieberman (2015) distinguishes three
major types of serious (intervention) health games: self-care (motivate and support individual health
behavior change, e.g., healthy lifestyle or disease self-management), active (requiring physical move-
ment, such as exergames, workouts, physical therapy, activity levels, or physiological response, etc.),
and healthcare delivery (e.g., diagnosis, treatment, training, or administration). A meta-analysis of
the use of narratives in health-oriented serious games concluded that they were positively associated
with changing knowledge, behaviors, enjoyment, and self-efficacy, although some of the relation-
ships were moderated by genre, collaborative play, and user age (Zhou et al., 2020).
A systematic review of health apps assessed the extent to which 17 oral healthcare education apps
included gamification aspects and reflected best dental practice (Fijačko et al., 2020). The authors
also rated each study’s results on usage and behavior change scores. While on average the apps
included only 6.9 out of 31 gamification features, the most frequent features were time pressure,

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virtual characters, and fantasy. Brushing time was correctly included in all but one app, and both
usage and behavior change scores were sufficient to high. Derksen et al. (2020) reviewed how vali-
dated elements in 14 serious health games were associated with changes in smoking behavior and
influences (e.g., attitude, self-efficacy, or perceived risk). The 24 elements were grouped into five
categories (narrative and identity, social, manipulation and control, reward and punishment, and
presentation). The games averaged 5.5 of the 24 elements, with the most frequent categories being
reward and punishment and narrative and identity.

Use Patterns of Online Health

Aside from individual-level information seeking, online health technologies also afford communica-
tion with others, most notably among and between peers and medical professionals. (Due to space
limitations, we do not discuss the important and intriguing, but less visible, forms and use of health
communication technologies, such as among physicians/healthcare providers, especially in hospital
settings. See Chapter 14 on provider and patient communication skills training, Chapter 15 on
patient-provider communication and outcomes, and Chapter 17 on interprofessional communica-
tion, all in this volume.)
A meta-analysis of 43 studies on online support groups showed a wide range of effect sizes, with
generally positive outcomes for stress, depression, quality of life, self-efficacy in dealing with health
problems, and physical health (Yang, 2018). As Wright (2015) notes in his summary of research on
computer-mediated support for health outcomes, a key feature of such interventions is “optimal
matching” between the resources of support providers and needs of support seekers. Group-based
online support is particularly beneficial for patients with stigmatized health conditions and those
who lack offline sources of support. However, that also means that online support and discussion
groups can reinforce and share information about non-healthy and risky behaviors (e.g., Park, 2020).
Baker and Watson (2020) show that use of online health information is related to patients’ com-
municative behaviors (such as willingness to disclose, communication competence, and communica-
tion anxiety) with their health professionals. Physicians and nurses have reported varying perceptions
of patients’ use of online health information. Positives include preparing for, following up on, clari-
fying, or obtaining more information provided in physician consultation; gaining more familiarity
with health information; empowerment and engagement; self-evaluating to determine whether a
physician meeting is necessary; and reducing anxiety. Negatives include users bringing irrelevant,
inappropriate, or contradictory information to consultations; perceived challenge to medical exper-
tise; concerns about accuracy and reliability; and additional work to interpret the online health
information the patient found. Online reviews can provide extensive and natural evaluative content,
such as patients’ comments on Yelp about their obstetrician-gynecologists (Peuchaud, 2019).

Technological Features and Affordances

The widespread diffusion of digital media and technologies for health communication has given rise
to a large corpus of research on their uses, effects, and effectiveness. Whereas most early research
tended to treat these media as technological objects, emergent research has focused on specific
technological features (or differently conceptualized as affordances) that may be directly associated
with health and wellness outcomes. For example, mobile apps offer a variety of choices of diet and
fitness programs to undertake and track, each with a plethora of features relating to customizing
one’s profile, posting photos of one’s milestone achievements, and networking with other users of
the app, which have been shown to predict user adherence to health regimens (Molina & Sundar,
2020). Such features tap into a variety of user needs—awareness, monitoring, self-care, autonomy,
connectedness, self-efficacy, behavior change, and healthy lifestyle, to mention just a few. Such needs

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are fulfilled by a growing number of technological features relating to interactivity, tailoring (i.e.,
personalization and customization), mobility, community, and ubiquity. We illustrate two central
features here: interactivity and tailoring.

Interactivity
Interactivity is perhaps the most fundamental feature of digital media. Sundar (2007) conceptualizes
it as a technological affordance that enables users to experience mediated content in three distinct
ways—by acting on the interface using a variety of interaction techniques such as clicking, sliding,
tapping, and zooming (modality interactivity); by exchanging highly contingent messages with and
via the medium (message interactivity); and by customizing, curating, and creating content (source
interactivity). In a series of studies on anti-smoking websites, Oh and colleagues have shown how
simple interactivity tools can persuade online users. Modality interactivity, in the form of tools such
as sliders and animation, can increase “perceptual bandwidth” (Oh & Sundar, 2015) and telepres-
ence, with consequent reduction in defensive processing and greater quitting intentions among
smokers with low or moderate self-efficacy (Oh & Jin, 2018). Message interactivity, in the form of
contingent message exchanges, can foster more mindful engagement with the information, particu-
larly among those less involved with the health topic (Oh & Sundar, 2015). Source interactivity, in
the form of like, comment, and share buttons, seems to provide a greater sense of personal agency
and promote more systematic processing of the health message (Oh et al., 2020).

Tailoring
The contingency of user-system interaction is best realized when an online health system actively tai-
lors content based on each individual user’s needs, preferences, and system actions. Tailoring targets
the individual based on characteristics salient in a health situation and has the potential to provide
personalized care in a manner that is more feasible and efficient than face-to-face health communica-
tion. Meta-analyses have overwhelmingly confirmed the positive health outcomes of tailoring (e.g.,
Lustria et al., 2013).
Tailoring has become very sophisticated with recent advances in personalization technologies.
These technologies are powered by machine learning algorithms that track individual users’ behav-
iors on the system with great accuracy; the algorithms design, select, and provide highly person-
ally relevant messages based on user behavior. For example, Rabbi et al. (2017) have shown that a
mobile app (MyBehavior), which provides personalized suggestions in the form of easy-to-follow
action items (based on tracking one’s diet and physical activity), can be quite effective in promoting
preventive health behaviors. Yet, tailoring based on personalization comes with a potential risk to
one’s privacy and fear of surveillance.
Another form of tailoring is customization, where the users, not the system, do the tailoring. In
most modern health systems, users are given an opportunity to indicate their preferences, including
self-reporting their health activities and setting the privacy options. Such customization is theorized
by the motivational technology model (Sundar et al., 2012) to provide a sense of autonomy to
users. The model also posits that other technological affordances such as interactivity and navigabil-
ity provide opportunities for users to relate to others and gain a sense of competency, respectively.
And, based on self-determination theory (Ryan & Deci, 2000), fulfilling the needs for autonomy,
relatedness, and competency can help enhance intrinsic motivation to engage with the health sys-
tem and thereby reap its well-being benefits. For example, Molina and Sundar (2020) showed how
various features in a social media app for bodybuilders and weightlifters reflected the three needs:
autonomy (selecting different workout programs, and self-disclosures), competence (uploading and
display of photos), and relatedness (number of followers and followed, and naming others or named

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as inspirational). Use of these features was differentially associated with behavioral outcomes such as
weight goals achieved, tracked workouts, and weight lifted.

Conceptual Challenges and Theoretical Opportunities

The increasingly integral role played by the increasingly wide range of digital and online technolo-
gies to seek, receive, and produce health communications has required scholars to revisit established
communication concepts, such as source and credibility, as well as many other issues such as qual-
ity, privacy, and access, and to pay more attention to the affordances of media technologies, such as
interactivity and tailoring.

Sources, Sourcing, and Source Layering

The sender or source is the originator of communication and therefore quite central to any consid-
eration of user reception to mediated information. Whereas the source is quite obvious when we
receive information via traditional media, it is quite murky in online media (Sundar & Nass, 2000).
In addition to the “original source” (i.e., the person providing new information), various “selecting
sources” edit, disseminate, tag, rate, forward, retweet, search for, aggregate, and oppose information
via the Internet. In their typology of online selecting sources, Sundar and Nass (2000) distinguish
between visible sources (those that are seen as delivering the information, such as a doctor or medi-
cal organization), technological sources (a medium or media that the user psychologically perceives as
the source, such as Facebook or Twitter or even the Internet), and receiver sources (users themselves
either individually or collectively—your friend who posted this on Facebook or other members
of an online support group). Depending on which of these sources is salient during the course of
communication, online users are likely to perceive the content differently because they apply differ-
ent decision rules when they encounter different sources (further, affordances available in different
platforms would likely interact with source differences).
Some research suggests that visible sources are obscured by health campaigns on social network-
ing sites (SNS), based perhaps on the belief that “SNS audiences may rely less on the attributes of
visible sources to evaluate information” (Shi et al., 2018, p. 50). However, there could be consider-
able value in prominently displaying credible and established sources of health information even
in social media. For example, Lin et al. (2016) found that the authority cue (i.e., associated with a
legitimate source such as Centers for Disease Control and Prevention) increased positive assessment
of health information on Twitter, an effect that was more pronounced when other cues, including
the bandwagon cue (i.e., number of replies and retweets), were also present.
Although each source can be aligned along any one dimension (e.g., level of professional gatekeeping
or medical expertise, for instance) in an ordinal fashion, source layering can lead to combination effects.
For example, Lee and Sundar (2013) discovered that a doctor’s tweets are more credible than the doc-
tor’s retweets, whereas a layperson’s retweets are perceived as more credible than the layperson’s original
tweets about health issues. Considering that health information is often conveyed via different aggrega-
tor sites or source layering, it is important to recognize that user trust in one site may be partially condi-
tioned upon the perceived credibility of related sites. Shi et al. (2018) extend the source layering concept
to the dualism of social media messaging impact: Initial receivers/viewers can potentially create massive
impacts beyond the initial campaign message via forwarding, linking, reposting, and recommending.

Credibility
The problem of health information credibility has been an issue since the early days of the Internet
(see Rice, 2001, for an early review of health information credibility assessments and experiments).

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A content analysis of 197 websites using the DISCERN tool, which helps individuals assess the qual-
ity of written health information online, found that the overall reliability and quality of treatment-
related information and general health information was modest, although very few websites (12.2%)
were certified to provide such health information (i.e., Health on Net code approval; Dol et al.,
2019). With the diffusion of conversational agents providing health information (e.g., Siri, Alexa,
and Google Assistant), there is renewed attention to the quality of that information.
Scholars have identified a range of strategies that people use for credibility assessment of online
health information (e.g., brand credibility, source credibility), especially via search engines (e.g.,
Google), and related those to users’ assessment of search results (e.g., name of the site triggering
authority or expertise heuristics; search rank cueing machine heuristic). Among savvy Internet users,
peer-to-peer sources of health information, appearance of the site, and author credibility play an
important role in determining the perceived credibility of health information (Klawitter & Hargit-
tai, 2018). Real-user search data in an experimental setting, along with interview data, revealed that
people generally use five heuristic strategies for health information seeking: reputation, endorse-
ment, consistency, expectancy violation, and persuasive intent (see also Chapter 27, this volume).
Such heuristics-based approaches to evaluating credibility of online information are dependent
on the clear visibility of cues on the interface of the medium, according to the theory of interactive
media effects (TIME), which is inspired by dual process models in social psychology (Sundar et al.,
2015). The basic mechanism is that such cues trigger relevant cognitive heuristics (or rules of thumb,
such as “experts’ statements can be trusted” and “if so many people like it, then it must be true”),
which in turn shape the perceived credibility of the underlying content. A post with a doctor or
journalist label may trigger the “expertise heuristic,” whereas reminding consumers that other users
of the health website rated this as the most important item, or a high number of “likes,” may lead
to application of the bandwagon heuristic (Sundar, 2008). TIME refers to this as the “cue route” to
user perceptions and distinguishes it from the more effortful and involved “action route,” which is
based on users engaging the affordances of the medium and thereby realizing the aforementioned
effects of interactivity and customization by expanding their information processing, agency, and
self-determination.

Privacy, Quality, and Access

No review of health technologies would be complete without highlighting the significant concern
that has arisen in recent years with privacy, especially as it pertains to sensitive personal health infor-
mation, as well as issues related to quality and access.
Choosing to use wearable health devices with network connectivity entails trade-offs between
risks (e.g., privacy) and rewards (e.g., pain management). Robinson (2019) lists 21 types of person-
ally sensitive identifiable data and notes which of those are collected by five chronic pain wearable
devices. Information collected by wearable health devices and sensors, if not linked to medical
information systems that are governed by HIPAA and other regulations, is generally not protected.
Health device wearers are generally concerned about privacy and security of such sensitive person-
ally identifiable information, but they are not well-informed about what is collected, how it is used,
and the extent to which their data are protected (Cilliers, 2020; Robinson, 2019). Ethical concerns
exist for established AI care providers (AICPs) for the mentally ill. The general quality of AICPs is
well established, following guidelines set by reputable medical organizations, but patient privacy is
still a significant concern (Luxton, 2014).
Torous and Roberts (2017) expressed grave concern about the use of mobile applications for
mental health problems due to a lack of transparency and reliability in the data shared with users.
Unverified information delivered by mobile apps (e.g., drug dosage calculator) could result in fatal
consequences. Although an initiative to avoid extremely harmful cases has begun (e.g., Apple not

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allowing unverified apps, setting guidelines for health-related apps), how the market will deploy
feasible ways to establish the credibility of mobile apps is uncertain (Torous & Roberts, 2017).
Given the easy access of mobile applications for voice talk and chatting, digital psychotherapy has
become popular (Martinez-Martin & Kreitmair, 2018). Known as “peer counseling” (p. 2), direct-
to-consumer digital psychotherapy does not require certified counselors. As a result, the quality of
the therapy is not verifiable, so the consultation might not be safe for users.
Scholars have consistently pointed out that access to eHealth technologies is limited among low
socioeconomic populations, racial and gender minorities, and those living in rural areas, as well
as those with disabilities (who also tend to be predominantly seniors; Anderson & Perrin, 2017)
and particularly so in the COVID-19 context (Khilnani et al., 2020; see also Chapter 29 on health
disparities and Chapter 35 on marginalized, groups both in this volume). As a result, the benefits
of many of the new technologies described in this chapter might not be available to, usable by, or
applicable for these groups. For example, reviewing articles from 2000 to 2016, Verhoeks et al.
(2019) summarized barriers to and expectations of women’s use of eHealth treatment. Barriers were
lower than for face-to-face treatment, due to issues such as shame and scheduling, although women
preferred more face-to-face support complementing their eHealth treatment. Ensuring equality in
access to eHealth across diverse populations continues to be an important policy goal (Rajkomar
et al., 2018). Limited access to eHealth among marginalized groups might also be due to a lack of
diversity in the design of technology. A systematic review of 74 studies published between 2010
and 2014 revealed that difficulty in finding and accessing appropriate health information online was
largely associated with both readability and usability of online health information. With a low level
of health literacy (see Chapter 28, this volume), including language barriers, many people are still
not able to locate or process the information they need online. In this sense, mobile applications
(mHealth) can help meet some needs of people with low health literacy by providing tailored ser-
vices in a more usable form (Kim & Xie, 2017).

Future Research Directions

Improving access and equity continue to remain important areas for research and development in
eHealth, as marginalized groups in our society and large segments of the population in the devel-
oping world are unable to make use of or benefit from online deployment of health resources and
services. The rapid diffusion of mHealth services has addressed this somewhat, but strategies for
increasing their use continue to evolve with a focus on persuasion (i.e., persuading users to seek
care, take medication, follow a regimen, and so forth). For aHealth applications, the biggest chal-
lenge is user retention. Although wearables, conversational agents, and health games have attracted
widespread adoption, they have struggled to retain users after the novelty has worn off. Therefore,
understanding motivations for or against sustained adherence is a key priority for future research and
design.
As the number of health technologies continues to rise, with increasing involvement of a variety
of smart media incorporating AI, the role played by new technological affordances in influencing
health outcomes will continue to attract research attention. For example, with deployment of smart-
phone apps, smart speakers, and smartwatches, the source signal will get even murkier than what we
encountered with web-based media, stimulating more research on source layering and credibility.
Much of the extant research on the effects of health information sources has focused on websites and
social media, but future research will likely focus on source layering effects when receiving health
information from a variety of newer technologies. Likewise, the range and scope of technological
affordances related to interactivity and tailoring will expand with increasing diffusion of AI-based
technologies that not only provide users a variety of cues for decision-making but also offer a range
of actions for users to collaboratively shape their health outcomes. How these affordances empower

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consumers with credible, tailored information and how they disempower them with misinformation
are fertile areas to research in the future. Finally, given the sensitive nature of personal health infor-
mation, future research would do well to address privacy and security concerns that invariably arise
as technologies become increasingly networked, pervasive, and embedded.

Conclusion
Our review of eHealth, mHealth, and aHealth technologies reveals that the landscape has grown tre-
mendously just within the last 10–20 years, as has research examining these technologies in a variety
of new and challenging domains. However, much of the research pertains to evaluations that tend to
conceptualize (often by assumption) technologies as objects or media vehicles. Research that expli-
cates and analyzes specific features or affordances of technologies and systematically investigates their
role in health outcomes is much needed as we look toward a future that promises more powerful and
complex features, such as AI-based automated technologies that not only offer conveniences (e.g.,
personalization) but also bring risks (e.g., privacy intrusion, errors). How users engage with specific
features or affordances of these emergent technologies as they attempt to maximize their benefits and
minimize their risks will vastly advance our understanding of the role of technology in promoting
health and well-being among individuals as well as the public at large.

Acknowledgements
The authors wish to thank Hyun Yang for her research assistance with the bibliography and Bingjie Liu for
her collaboration on an earlier outline of the chapter and assistance with the bibliography. Rice acknowl-
edges support through his endowed Arthur N. Rupe Chair in the Social Effects of Mass Communication.

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 SECTION VII

Overarching Issues in Health

Communication
 27
HEALTH INFORMATION
SEEKING
Nehama Lewis, Nancy Shekter-Porat, and Huda Nasir

The novel coronavirus (COVID-19), which originated in Wuhan, China, in late 2019, rapidly
developed into a global pandemic. In January 2020, COVID-19 became a focal topic in news media
coverage, on social media, and on traditional media outlets (TV, print newspaper, and radio). Only
17 years earlier, the world faced a similar threat, when another coronavirus—severe acute respiratory
syndrome (SARS)—broke out in a wet market near Hong Kong, killing 774 people and infecting
8,098 between November 2002 and July 2003 (World Health Organization, 2020a). A comparison
of these outbreaks illustrates the ways in which our information environment has been profoundly
altered by technological changes that have occurred during the interim. These developments have
also impacted the ways in which individuals seek health information and the sources they use to
obtain it. In this chapter, we define health information seeking (HIS) and review the theoretical
frameworks and methods that have been used to study HIS, as well as its impact on cognitive and
behavioral outcomes. We then discuss challenges and opportunities for research on HIS.
One of the most significant changes that has taken place during this period has been a shift
toward the use of online and social media platforms as important sources of health information. In
2003, during the SARS outbreak, a significantly lower proportion of the public used social media
platforms, and the Internet was not yet as central a source for health information as it is today.
According to a survey by the Pew Research Center, in March 2003, 66% of U.S. Internet users, or
77 million American adults, reported having gone online to look for health or medical information
(Pew Research Center, 2003). Similarly, a 2003 survey of the Canadian public during the SARS
pandemic found that traditional mass media were the most used information source for information
about the virus, with only a quarter of respondents reporting seeking information from the Internet
(Jardine et al., 2015).
In contrast, many people today are connected via a global network of online and mobile informa-
tion and communication technologies (ICTs) and social media channels, and they have access to a
vast array of health information (Zimmerman & Shaw, 2020). In countries with unrestricted access
to the Internet and social media, access to these new channels has made HIS more pervasive. Results
of the 2017 Health Information National Trends Survey (HINTS; National Cancer Institute, 2020)
found that 80.2% of U.S. adults (an estimated 165 million adults) reported seeking health infor-
mation online. This was a sharp increase from the estimated 66 million U.S. adults who reported
seeking health information online in the 2003 HINTS (National Cancer Institute, 2020). In China,
during the first few months of the SARS outbreak, while social media was only beginning to emerge
as a source of health information, the government was able to prevent the spread of information.

DOI: 10.4324/9781003043379-34 399

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Today, with the high prevalence of social media use, including sites such as WhatsApp, YouTube,
and Weibo, it is increasingly more challenging to control the spread of information or ensure that
information that is disseminated is accurate (see Chapter 22, this volume). However, the public can
also access information more readily, even when attempts are made to control the press.

Definition of Health Information Seeking

Health information seeking has been defined and measured in various ways (Lambert & Loiselle,
2007), but most definitions suggest that information seeking is motivated by a person’s informa-
tional needs and is a deliberate behavior that aims to fulfill these needs (Case, 2012). Information
seeking refers to an active effort to obtain information about a specific topic, using any source(s)
to obtain desired information, that occurs outside of routine patterns of interpersonal commu-
nication or general media use (Case, 2012; Griffin et al., 1999; Lewis, 2017; Niederdeppe et al.,
2007). Health-information-seeking behaviors (HISB) have been defined in relation to their
trigger, channel, source, search, strategy, type of information sought, and outcomes (Galarce
et al., 2011).
Health information seeking is a subject of growing scientific interest and importance in com-
munication research and in other disciplines. One of the first conceptualizations of HIS was offered
by Lambert and Loiselle (2007), who conducted an extensive analysis of health-information-seeking
behaviors, offering insights into its key components, including its antecedents, characteristics, and
outcomes. Lambert and Loiselle characterized HISB by the type and amount of health-related infor-
mation sought, the specific action implemented to obtain the information, and the sources that were
used to obtain it (p. 1013). Research on HIS has grown significantly since that time, driven by the
rapid increase in the amount of health information in our environment and the continued shift from
a paternalistic model of patient-clinician interaction to a model of shared decision-making (Légaré &
Witteman, 2013).
The importance of HIS has also been supported by studies showing evidence that information
seeking impacts behavior, as well as other outcomes. Health information seeking has been found to
predict outcomes such as emotional well-being, disease management, and the behavior of cancer
patients (Tan et al., 2012), fruit and vegetable consumption and unhealthy snack and sweetened
beverage consumption (Beaudoin & Hong, 2011; Lewis et al., 2012), and certain cancer screening
and prevention behaviors (Ramírez et al., 2013). In this chapter, we examine how HIS has been
conceptualized within communication theory and research, and we outline some of the ways in
which research on HIS has been affected by technology. We then address challenges and discuss new
directions for research on HIS.

State-of-the-Science Review of HIS Research (2010–2020)

In this chapter, we examine the ways that HIS has changed in the digital age and how these changes
are reflected in published research. In order to assess the breadth and diversity of theoretical frame-
works and methods that have been used in research on HIS, we conducted a narrative review of
published studies on this topic. Our review examines (a) theories used to study HIS, (b) the contexts
(health behavior or topic) in which it was investigated, (c) the populations studied, (d) the research
methods and measures used, and (e) the channels examined.
Our sample included studies that were published between January 1, 2010, and December 31,
2019, in five of the highest impact journals: two specific to health communication (Health Com-
munication and the Journal of Health Communication) and three from the field of communication more
broadly (Communication Research, Journal of Communication, and New Media and Society). The inclusion

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criteria for this analysis were adapted from reviews by Lambert and Loiselle (2007) and Zimmerman
and Shaw (2020) and were as follows:

• The scholarly works were published in English in one of the selected peer-reviewed journals
between January 1, 2010, and December 31, 2019. We included articles that were published
online (and were accessible) ahead of print, even if the print publication date was after Janu-
ary 1, 2020.
• The study focused on actual behaviors of individuals when seeking health-related information.
• The term “health information seeking” had to appear in the title or abstract or within the pri-
mary study measures or core theoretical framework.

We searched for articles on each of the journal websites, as well as through Web of Science, MED-
LINE, and PubMed databases. The search was conducted using the words “health information seek-
ing,” using Google searches to supplement results from the journal databases. For our final analysis,
170 journal articles were found to have met the inclusion criteria, of which 92 were published the
Journal of Health Communication, 69 in Health Communication, five in Communication Research, three in
the Journal of Communication, and one in New Media and Society. Two authors thoroughly read each
article and coded them to identify the following six elements:

• The theoretical frameworks or constructs applied to examine HIS

• The context (health behavior or topic) in which the study was conducted
• The sample or population studied
• Method(s) used to study health information
• Measure(s) used for HIS
• Channels and sources of health information examined in the study

Our review is not intended to be an exhaustive content analysis of this topic, and it includes only
a small sample of the universe of published research on HIS. Rather, our aim is to describe recent
trends in theory and research and to identify new directions and approaches that have been used
to study this topic. The majority of the research found in this review used quantitative methods,
applying a scientific paradigmatic perspective. However, some studies used other perspectives, such
as Kosenko et al. (2014), who conducted qualitative in-depth interviews with female patients with
HPV, and Dutta et al. (2018), who used a critical-cultural analysis of sensemaking and HIS among
adults in Singapore.

Theories
Our review identified the theoretical frameworks used to study HIS. The most prevalent theoretical
frameworks for studies in our sample were the structural influence model (SIM; Viswanath et al.,
2007), the planned risk information seeking model (PRISM; Kahlor, 2010), uncertainty manage-
ment theory (UMT; Brashers, 2001, 2007), media complementarity theory (Dutta-Bergman, 2004),
the comprehensive model of information seeking (CMIS; Johnson, 1997; Johnson & Meischke,
1993), the risk information seeking and processing model (RISP; Griffin et al., 1999), and the
theory of motivated information management (TMIM; Afifi & Weiner, 2004). Other studies in our
sample applied theories that have been used more broadly within communication research, such as
uses and gratifications (Katz et al., 1973; Rubin, 1994), diffusion of innovations (Rogers, 1962),
McGuire’s communication-persuasion model (McGuire, 1989), Slater’s reinforcing spirals model
(Slater, 2007), and the extended parallel process model (EPPM; Witte, 1992).

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We also noted a growing number of studies that have examined HIS using theories from psychol-
ogy, such as self-affirmation theory (Steele, 1988), the theory of planned behavior (TPB; Ajzen &
Fishbein, 1980), the integrative model of behavioral prediction (IMBP; Fishbein & Ajzen, 2011),
and self-determination theory (SDT; Ryan & Deci, 2000; Deci & Ryan, 2008). Our review also
identified studies that have examined HIS using models of health behavior, such as the health belief
model (HBM; Rosenstock, 1974), and information behavior, such as Wilson’s model of informa-
tion behavior (Wilson, 1999). In addition to studies that applied these theories, a number of studies
examined HIS as a focal construct (e.g., Lewis et al., 2012) or in conjunction with information
scanning (e.g., Waters et al., 2016).

Contexts
Our review revealed that a substantial proportion of research on information seeking investigated
HIS in the context of cancer. This is consistent with the fact that cancer is the second leading cause
of death globally, accounting for an estimated 9.6 million deaths, or one in six deaths, in 2018
(World Health Organization, 2020b). Cancer is also the second leading cause of death in the United
States, after coronary heart disease (Xu et al., 2020). The focus on cancer is also related to trends in
the allocation of public research funding. For example, in 2018, the National Institutes of Health
(NIH) allocated the highest amount of funding for cancer-related research (U.S. Department of
Health and Human Services, 2020).
Although cancer (breast cancer, brain cancer, and prostate cancer, among others) was the most
common health context, other contexts for research on HIS included smoking (Noh et al., 2016),
nonmedical drug use (Cheng et al., 2017), mental illness (Francis, 2018; Lee, 2019), cystic fibrosis
(Dillard et al., 2010), reproductive health (Zimmerman, 2018), diabetes (Yom-Tov et al., 2016;
Zhang et al., 2020), and physical activity (Valle et al., 2015), among others. In addition, a number
of studies focused on psychosocial and emotional correlates of information seeking, such as worry
(Lee & Hawkins, 2016), regret (Ahn & Kahlor, 2020), trust (Lee et al., 2018; Mendes et al., 2017),
and fatalistic beliefs (Valera et al., 2018). Other studies examined the relationship between health
literacy and information seeking (e.g., Kim et al., 2015). Thus, our review reveals a diverse range of
contexts for research on HIS, which includes examining effects of information seeking on behavior.

Populations
Our review also showed an increasing number of studies examining HIS across diverse populations.
This trend reflects a growing awareness among health communication scholars of the role of social
determinants in shaping information seeking and of health and digital disparities. For example,
research has examined HIS among women (Chae & Quick, 2015; Zimmerman, 2018) and men
(Francis, 2018; Pask & Rawlins, 2016), among older (Hall et al., 2015) and younger populations
(e.g., Cheng et al., 2017), across people from different ethnic backgrounds (e.g., Geana et al., 2011),
and among immigrant communities (e.g., Nguyen et al., 2010; Oh et al., 2012).
The focus on diverse populations and on examining disparities is also evident in the structural
influence model (SIM; Viswanath et al., 2007), a widely used theory in HIS research, which looks
at the impact of social determinants on the information seeking process. The SIM asserts that health
outcomes and health disparities are a result of social demographics (i.e., age, gender, race/ethnicity,
education and socioeconomic status; Galarce et al., 2011; Viswanath et al., 2007). Since 2010, health
communication scholars have applied this theoretical framework to examine HIS among diverse
contexts and populations. For example, Bigsby and Hovick (2018) applied the SIM to examining
seeking and scanning in the context of risk behaviors. The SIM has also been applied to examine
cancer information disparities of cancer survivors (Blanch-Hartigan & Viswanath, 2015). This body

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of research offers important insights into how individual-level factors, including race and ethnicity,
influence information seeking and how these factors jointly shape health beliefs and behavior.
The focus on disparities in HIS is also reflected in growing support for research that uses technol-
ogy to reduce disparities in health-information-seeking behaviors. The National Institutes of Health’s
current grant allocations (National Institutes of Health, 2020) include a number of funded projects
aimed at making health information more accessible and at training professionals to help information
seekers. These projects include research on HIS that targets marginalized groups, including African
American and Hispanic populations, low-income populations, and physically challenged popula-
tions (i.e., elderly, physically frail, hearing impaired, disabled). In addition, these projects include
research that tests ways to make health information more comprehensible for populations with lower
eHealth literacy, such as infographics and chatbots, based on artificial intelligence (AI).

Research Methods
Our review revealed that the range of methods used to study HIS has expanded significantly dur-
ing the last decade. The majority of the studies in our sample used observational methods. These
included several studies that analyzed data on HIS that were collected through the National Cancer
Institute’s HINTS (e.g., Kim & Kwon, 2010; Nan et al., 2012). Other studies have analyzed data
collected through the Annenberg National Health Communication Survey database (e.g., Hovick &
Bigsby, 2016; Yang et al., 2017). These datasets are an important resource for scholars, and studies
analyzing these data offer valuable insights into HIS. The use of cross-sectional data, however, limits
the extent to which it is possible to infer causal relationships between information seeking and other
constructs. For example, HIS may be driven by a person’s interest in a particular health topic or
behavior (e.g., vaping), which may then motivate them to seek information about the same topic.
Thus, it is not possible to determine whether an observed association between HIS and behavior is
driven by the health behavior or by information seeking or is possibly bidirectional.
Several studies in our sample used longitudinal analyses to show evidence for lagged causal rela-
tionships between HIS and outcomes that include health behaviors (e.g., Lewis et al., 2012; Ramírez
et al., 2013; Yang et al., 2019), as well as emotional outcomes (Mello et al., 2013). According to this
approach, evidence for causal effects of HIS must show significant associations between information
seeking at baseline and the behavioral outcome at follow-up, controlling for the same behavior at
baseline. In addition, the observed association must account for the effects of potential confounders
(Shadish et al., 2002). For example, Yang et al. (2019) found that seeking information about vaping
at baseline was related to higher likelihood of vaping six months later, controlling for smoking, vap-
ing status, intention to vape, and demographics at baseline.
Studies testing lagged effects have used different analytic strategies, including ordinary least
squares regression models, logistic regression analyses, and cross-lagged structural equation models.
In addition, studies testing longitudinal models have used sensitivity analyses to test for associations
in the reverse direction of those hypothesized (e.g., Yang et al., 2019), as well as propensity scoring
methods (e.g., Lewis et al., 2012). Propensity scoring aims to replicate the conditions of random
assignment in experimental designs by creating a propensity score for participants to estimate their
probability of seeking information, conditional on confounders (Rosenbaum & Rubin, 1983). The
results of these studies provide evidence to enhance confidence in claims of temporal order and
reduce the likelihood that observed effects might be due to confounding variables. However, even
with the use of longitudinal data and propensity scoring methods, these studies use observational
methods rather than a randomized controlled experimental design. Thus, they cannot offer conclu-
sive evidence regarding causal effects of seeking on behavior.
Although the majority of studies in our sample used observational methods, other stud-
ies examined HISB by conducting interviews (e.g., Kosenko et al., 2014), through web tracking

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(Neuberger & Silk, 2016), and through content analysis (Merten et al., 2020). We also noted an
increasing number of studies that used experimental methods to test causal claims related to individ-
ual factors and theoretical constructs that may predict information seeking or be affected by it. For
example, Lee and Hawkins (2010) used a randomized controlled trial to understand how the unmet
informational needs of patients diagnosed with breast cancer impact patterns of health-related Inter-
net use. Goodall and Reed (2013) tested effects of print news stories about bed bugs on participants’
intention to seek information about this topic within the framework of the EPPM (Witte, 1992).
Cunningham et al. (2014) used a discrete choice experimental method to model mental health
information seeking processes, using constructs from the TPB (Ajzen & Fishbein, 1980). A study by
Demetriades and Walter (2016) used a longitudinal (three-wave) online experimental design to test
whether self-affirmation impacts information seeking and water-conserving behavior across time.
This research design is methodologically superior to cross-sectional observational designs, as it com-
bines the benefits of high internal validity with measures over multiple points in time, accounting
for potential confounds.

Measures of HISB
The majority of studies in our sample measured HISB using self-reported measures, which can be
readily adapted across contexts and populations. However, as self-reported measures of information
seeking are reliant on participant recall, they may be inaccurate reflections of the actual frequency
of seeking behaviors or of the sources from which information was sought (see Lewis, 2017). To
address these concerns, scholars have attempted to validate measures of HISB in the context of
cancer (Kelly et al., 2010) and substance use (Lewis et al., 2017). These studies used longitudinal
cohort studies to test the discriminant, nomological, and test-retest validity of these measures and to
offer evidence that they represent valid indicators of information seeking. However, more research
is needed to validate these measures of HISB in other contexts.
Another approach to improving measurement has been to incorporate new technologies as alter-
natives to self-reported measures of HISB. For example, researchers have used eye-tracking meth-
ods (Kessler & Zillich, 2019), think-aloud protocol software (Macias et al., 2018), web tracking
(e.g., Lee & Hawkins, 2016; Neuberger & Silk, 2016; Yom-Tov et al., 2016), and network analysis
(Himelboim & Han, 2014) to assess HISB. These methods can offer new insights into HIS, while
addressing some of the methodological challenges posed by self-report.
The use of new measures, including functional magnetic resonance imaging (fMRI) and software
tracking technology, has been facilitated by research funding from large funding organizations such
as the NIH to support interdisciplinary research. These projects benefit from a multidisciplinary
research team with supplementary expertise from researchers in data science, psychology, neurosci-
ence, statistics, and other fields. Interdisciplinary collaborations also facilitate the use of multiple
methods and measures to study HIS. For example, a recent study on HIS among college students
in Germany used an integrative approach employing computer eye tracking to follow participants’
online information seeking about vaccinations, together with the traditional communication method
of content analysis of the tracked online information (Kessler & Zillich, 2019).

Channels
In the 20th century, health information channels were classified as either interpersonal (family,
friends, colleagues, healthcare providers) or mediated (mass media, newspaper, radio, television).
However, the Internet challenged this typology, which was then further complicated when social
media platforms (such as Facebook, Twitter, and WhatsApp) were developed. These changes to our

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media landscape have prompted scholars to expand their research to reflect the new ways in which
individuals seek health information. This trend was evident from our review of research, which
revealed an increasing diversity of channels for HIS that were studied (from 2010 until 2020). For
example, recent studies have focused on HIS from social media platforms such as Facebook (e.g.,
Syn & Kim, 2016), Twitter (Himelboim & Han, 2014; Lee & Oh, 2013), Instagram (Wilson et al.,
2019), Reddit (Record et al., 2018), and Pinterest (Merten et al., 2020). We also noted a growing
proportion of international studies, as well as those that have examined HIS from channels that are
popular in non-Western countries, particularly in China. For example, our sample included research
on HIS from the Chinese platform WeChat (e.g., Zhang & Jung., 2019) and on the microblogging
site Sina Weibo (Yang & Wu, 2019).
Although this expansion of research on channels for HIS is a positive and necessary progression
for health communication literature, it also poses methodological and conceptual challenges for
researchers. For example, the pace at which our media environment is developing threatens to out-
strip the slower, deliberate process of scientific research and publication. As a result, research on HIS
from channels that are popular at one point in time can become rapidly outdated when the channel
or source fades into obsolescence (e.g., Myspace).
In addition, as people obtain health information from a broader range of channels, measures of
self-reported information-seeking behaviors become more susceptible to inaccurate recall and thus
become less reliable. In an interconnected information environment, in which people can (and
do) access multiple channels concurrently, this measurement challenge becomes even greater. For
example, individuals who seek health information from an online search engine may continue their
online search on a forum, a news site, or a social media platform. In this case, or similar cases, study
participants who are asked to recall and report which channel they used to seek health information
may not be able to clearly distinguish between channels.

Methodological Advances in HIS: Opportunities and Challenges

The development of new methods to study HIS offers new opportunities for researchers to conduct
innovative, interdisciplinary research that can help move the field of health communication forward.
These methods also enable scholars to explore HIS in different contexts and to test new hypotheses
and research questions. However, many newer research methods demand specialized expertise in
big data analysis and/or computational methods. The value of these methods and of the expertise
necessary to use them may be perceived quite differently by scholars at earlier stages of their career
than those at a more advanced stage.
Some researchers who have investigated HIS prior to the digital era might be reluctant to invest
the time and effort needed to master these new methods. The digital “learning curve” required to
keep up with new research methods can be steep, particularly for scholars who are juggling compet-
ing research and professional demands. The investment in learning new research methods may also
prove to be frustrating for scholars who learn a new research method, only to find that the field has
since moved on to even newer methods.
In contrast, researchers who are at an earlier point in their career are often at the forefront of
these methodological advances and may be more open to acquiring new methods. The growing
interest in these methods is evidenced by the International Communication Association’s newly
established Communication and Technology (CAT) division, which promotes research on the role
of ICTs in the processes of human communication. Discrepancies in perspectives regarding newer
methods between scholars at different stages in their career can be challenging to bridge. However,
this process of methodological change is an important mechanism by which research fields generally,
and research on HIS specifically, can advance.

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Conceptual Challenges and Theories of HIS

Our review suggests that the theories and concepts we use to study HIS also need to be reexamined.
Many of the theories we use to study HIS, including some of the most frequently applied theories in
our review, pre-date the Internet and the widespread adoption of social media channels. As a result,
assumptions about how and why people seek health information that underlie these theories should
be reconsidered. To remain useful, theories and models of HIS must be applicable to a media envi-
ronment that facilitates interactivity and user-generated content and enables rapid access to informa-
tion through mobile phones and social media channels.
In addition, some theories may work well in particular contexts but be less applicable in others.
For example, theories such as CMIS (Johnson, 1997; Johnson & Meischke, 1993) focus on infor-
mation seeking in the context of cancer but may be less applicable to understanding HIS in other
contexts. In addition, information seeking about controversial or sensitive health topics or about risk
behaviors may be driven by different factors, through different channels, and have different effects.
Our review revealed that research on HIS is beginning to consider potential negative effects of
information seeking, not only positive effects of HIS on behaviors that are beneficial to people’s
health. This perspective challenges the assumption that individuals who seek information will obtain
positive information about recommended behaviors and will be more likely to adopt these behav-
iors. The idea that information seeking might also lead to negative outcomes was raised by Johnson
and Case (2012), who proposed that information seeking that is driven by motivations other than
health protective ones may lead to different outcomes. They argue, “it is not that people do not
gather information or learn things, but often they gather the wrong information for the wrong rea-
sons from the wrong sources” (p. 133).
Another factor that may influence effects of HIS on behavior is the valence and diversity of informa-
tion that is available to information seekers. For topics such as cancer screening, the public communica-
tion environment is likely to offer information that is largely supportive of this behavior. However, for
other topics, such as drug use or e-cigarettes, individuals seeking information are likely to encounter a
more diverse range of information, including information that is supportive of these behaviors. This is
particularly relevant for topics about which the scientific evidence base is controversial, such as nonmed-
ical use of marijuana or other substances. For example, a study of information seeking about nonmedi-
cal marijuana and amphetamine use among college students in Israel and the United States found that
information seeking was often motivated by curiosity and that students reported obtaining conflicting
information about drug-related topics from different sources (Cheng et al., 2017; Lewis et al., 2016).
This body of research shows preliminary evidence that HIS may, in some cases, stimulate curios-
ity about risk behaviors and drive additional information seeking or reinforce intention to perform
these behaviors (Yang et al., 2019). This process is similar to the mechanisms of effects of HIS that
have been found for recommended behaviors (e.g., Lee & Kim, 2015). Recent research has also
found cross-sectional (Emery et al., 2014) and longitudinal associations (Yang et al., 2019) between
information seeking about e-cigarettes and vaping intention and behavior among young adults.
Other studies have found cross-sectional associations between information seeking about marijuana
and amphetamines and intention to use these drugs (Martinez & Lewis, 2016), as well as lagged
effects of information seeking on marijuana use among Israeli college students (Lewis & Martinez,
2020). Future research should continue to consider both negative and positive outcomes of HIS and
the theoretical and individual factors that might modify and mediate these effects.

New Directions for HIS

Research on HIS has undergone major changes in the last decade and will continue to adapt as
new technologies develop and are adopted. For example, the trend toward personalized health

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information is likely to influence the ways in which we seek health information. Information-seek-
ing behaviors may be augmented in the coming years by information that is tailored to the search
words (and, presumably, the underlying informational needs) of the user. For example, information
seeking may be mediated through the use of chatbots that are programmed to respond to human
queries and to provide interactive tailored health information. This approach was recently consid-
ered by Bibault et al. (2019), who looked at how chatbots could be used to provide personalized
health information to breast cancer patients. Health information seeking may also be facilitated by
the use of mobile applications that can be used to monitor health symptoms, as well as information-
seeking behaviors. For example, Scherr and Goering (2020) examined the utility of smartphone
applications for individuals diagnosed with depression for monitoring and facilitating HIS about
their condition. Finally, as social media become an increasingly central source of health information,
we expect that a greater proportion of research will focus on HIS from this channel, in contrast to
traditional media channels.

Conclusion
This review shows that HIS has been examined across a sizable and diverse body of research in our
leading health communication journals and continues to be a key topic within health communica-
tion scholarship. However, our findings also suggest that interest in HIS is not limited to health
communication scholarship. We identified a small but growing number of studies on HIS that were
published in leading communication journals that aim to appeal to a more general audience. We
expect that this trend will continue, particularly as the COVID-19 pandemic has underscored the
value of health communication research generally and the role of HIS in addressing disparities and
influencing public attitudes and health behaviors more specifically.

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 28
INROADS INTO HEALTHY
DECISION-MAKING
The Role of Health Literacy in Health
Communication

Sarah A. Aghazadeh and Linda Aldoory

Health communication researchers and practitioners strive to increase healthy decision-making and
positive health behavior, and over the last ten years, many have acknowledged the centrality of health
literacy in their efforts to do so. If people have inadequate health literacy, their health outcomes
suffer and a community’s health systems are taxed. Several studies have documented a relationship
between low health literacy and lower medication adherence (Zhang et al., 2014), less knowledge
of disease management (Al Sayah et al., 2013; Fransen et al., 2012), poorer health status (Berkman
et al., 2010), and higher medical expenses (Morrison et al., 2013). Thus, health literacy has become
a critical consideration in tailoring health messages and designing campaigns, as communication can
aid those with low health literacy to make better decisions about their health. Indeed, in some cases,
communication may actually increase health literacy levels when messages are tailored and culturally
appropriate.
Traditional health literacy research can be found in the field of medicine and has focused on
how well patients can understand prescriptions, discharge instructions, and doctor-patient forms
of communication. Much of the earlier research tested different ways to screen, score, and test
patients’ health literacy levels. Although these types of studies are still prevalent, health communi-
cation research has studied health literacy in broader ways. For example, researchers have included
non-patient audiences and have explored health literacy outside of medical contexts, such as in
communities, in schools, and online. This chapter reviews some of the traditional notions of health
literacy, but then it describes the different contexts for health literacy research in health communi-
cation and the opportunities that exist in health communication to explore health literacy and its
important role in positive health outcomes.
We begin this chapter with a review of health literacy definitions, territorial questions for schol-
arship, and common paradigms. Then we describe particular populations of interest and well-tested
measures used in health literacy research. We next cover some applicable models of health literacy
and offer a case example that represents these models and a community-based approach to a health
literacy campaign. We conclude the chapter with suggestions for future research.

Health Literacy Defined

One of the most common definitions of health literacy is “the degree to which individuals have the
capacity to obtain, process, and understand basic health information and services needed to make

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 Inroads Into Healthy Decision-Making

appropriate health decisions” (Institute of Medicine, 2004; Ratzan & Parker, 2000, p. vi). The World
Health Organization (WHO) has identified health literacy as a determinant of health itself (Kutcher
et al., 2016; WHO, 2013). Although literacy and health literacy are interrelated, they are not syn-
onymous. Indeed, much of the existing health literacy research has looked at the similarities and
differences between general literacy and health literacy (Ishikawa & Kiuchi, 2010). For example, lit-
eracy and health literacy both encompass skills-based and application components, requiring that the
skills be applied to a variety of situations (Nutbeam, 2000; Nutbeam et al., 2017). However, studies
have suggested that adequate general literacy (via reading, writing, and numeracy) does not guaran-
tee adequate health literacy (van der Heide et al., 2013). Although a person’s reading, numeracy, and
writing skills do influence their health literacy, health contexts are often unfamiliar and complicated
for most people (Centers for Disease Control and Prevention [CDC], 2019). This means that people
with high general literacy can still have low health literacy (Office of Disease Prevention and Health
Promotion [ODPHP], 2020).
Health literacy necessitates a range of communication skills. Nutbeam (2018) conceptualized it
as an “observable set of skills that can be developed and improved through effective communication
and education” (p. 4). This inextricably links health literacy with communication, and Berkman
et al. (2010) suggested the following modification to the health literacy definition: “The degree to
which individuals can obtain, process, understand, and communicate about health-related information
needed to make informed health decisions” (emphasis added; p. 16). Although Parker and Ratzan
(2019) argued that their definition should be used for reliability and consistency across contexts and
studies, they also agreed that it was time to explore the role of media and digital communication in
how people can obtain, share, and understand information.
In addition to skills in reading and communication, multiple researchers have found that health
literacy also includes components of self-efficacy and perceived health status (Aldoory, 2016; Squiers
et al., 2012). In other words, people with high health literacy believe they have good health and
are capable of carrying out behaviors to maintain and improve their health. Other factors such as
emotional state, anxiety level, access to care, and critical thinking skills can act as mediators in the
relationship between health literacy and health outcomes (Squiers et al., 2012).
Thus, a variety of factors beyond just reading skill comprise someone’s health literacy level. The
factors include a host of communication skills, such as listening and oral communication skills, self-
efficacy, numeracy, critical thinking skills, and some level of technological skills.

Disciplinary Encroachment and Questions of Territory

Although health literacy has begun to be considered its own “field” or “discipline” (Paasche-Orlow
et al., 2017, p. e14), debates over territory continue, probably because health literacy is such a
new scholarly domain. We have found that the field of health education includes health literacy
as a subdiscipline, although most researchers who claim to be doing health literacy research come
from medical schools. Meanwhile, the ties between health communication and health literacy are
strengthening, with the recognition that health literacy is highly dependent on strong communica-
tion skills (Nutbeam, 2000). As Ratzan (2001) argued, meaningful opportunities to use communica-
tion for improved health literacy exist, including “integrated marketing communication, education,
negotiation and social capital” (p. 211).
Health education has been defined as learning experiences designed to help individuals and com-
munities acquire the knowledge and skills needed to make good health decisions; it encompasses
methodical efforts to encourage people to take on healthy behaviors (Sharma, 2017). Scholars have
suggested that health literacy mediates the relationship between general education and health (van
der Heide et al., 2013) and that health literacy is a successful outcome of health education (Nut-
beam, 2008; Werts & Hutton-Rogers, 2013). Limited health education is linked to low health

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literacy (Ratzan, 2001). In addition, because the healthcare system has become more complex over
time, people need more health education to be able to navigate it successfully.
As with any relatively new discipline, health literacy and its growing body of knowledge come
with territorial conflicts. Health literacy began as a concept in the medical field, where communi-
cations such as discharge instructions, pharmaceutical labeling, and treatment plans were the inter-
ventions studied and where reading and comprehension were the main measures. These studies in
medicine still occur and comprise the major approach to health literacy. However, provider-patient
communication has become a helpful bridge between medical and health communication contexts
for health literacy. Understanding the role of health literacy in nonmedical contexts is also important
and is a space where health communication research can contribute. For example, community-based
health literacy campaigns, health messages on social media, and text message campaigns are examples
of health literacy efforts that are outside the medical domain and yet still important to improving
health outcomes.
Effective and well-orchestrated health communication, health education, and medical informa-
tion can all improve health literacy for individuals and communities. Communication and education
are not only meaning-centered human processes but are also tools to influence health literacy in
a strategic way, using evidence and targeted approaches (Allen et al., 2017). Both communication
and education empower people to change health behaviors. Thus, communication fuels the formal,
strategic, and accumulated education and promotion efforts to develop individual skills and address
contextual circumstances for improved health literacy over time.

Health Literacy Paradigms

As we considered the ways that scholars examine health literacy via health communication, educa-
tion, and medical research, we noticed that two paradigms have emerged for understanding what
health literacy is and what it can do for health outcomes. The first paradigm is a clinical one, which
mainly focuses on patient-provider communication and looks for opportunities to improve indi-
vidual health literacy and/or create materials that meet the needs of individuals who lack adequate
health literacy. The second one grew out of public health, which takes into account existing social
and health systems and seeks to empower people to face the social determinants that may block them
from improved health outcomes.

Clinical Paradigm: Deficit Perspective

Concern about health literacy emerged in the United States to “help physicians better communicate
their prescriptions and to help patients better understand and comply with treatment regimens”
(Pleasant & Kuruvilla, 2008, p. 152). From this clinical perspective, doctors should address low
health literacy through effective patient-provider communication. Clinical perspectives often are
framed within a deficit view where health literacy is a problem to fix, which prioritizes the adapta-
tion of processes and materials to address inadequate health literacy (Aldoory, 2016; McCormack
et al., 2016; Pleasant & Kuruvilla, 2008). This perspective also implies that the communication
burden is on the practitioner to develop health messages that are appropriate for a given population
(Aldoory, 2016), with little emphasis on improving patient or population capabilities to understand
complex health information.
The clinical perspective is also essential as providers consider individual patient outcomes; it was
born from the needs of medical and clinical disciplines to quickly assess and screen patient risks
(Nutbeam, 2008). The focus on a more clinical and individual notion of health literacy is also associ-
ated with the first decade of health literacy research, which primarily acknowledged and catalogued
inadequate health literacy (Parker & Ratzan, 2010). Yet, no matter how interesting and important

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individual skills are, the systems and environments in which individuals operate provide both oppor-
tunities and constraints in developing and applying those skills. As scholarship progressed and health
literacy research moved into the 2000s and 2010s, researchers and practitioners began to look at
health literacy not only as an individual health problem but also as a systemic, political, and health
equity challenge (Parker & Ratzan, 2010).

Public Health Paradigm: Engagement Perspective

The second paradigm derives from a fundamentally different worldview of health, where systems
and structures are the focus as they influence how people interact with and act on health informa-
tion. People must not only develop their skills and abilities but also equip themselves with assets and
proficiencies that increase resilience to the demands of their environment (Parker & Ratzan, 2010).
From this perspective, health communication can inspire people to want to establish a sense of con-
trol over their health, and health literacy can help them do so (Nutbeam, 2008). A public health
paradigm is also based upon an engagement approach to health literacy, where messages are tailored,
useful, and relevant to everyday lives (Aldoory, 2016).
The public health perspective assumes that inadequate health literacy is not simply a problem or
risk factor for socially disadvantaged groups but also a symptom of larger structural issues that inter-
twine with a variety of other social determinants (Rüegg & Abel, 2019). Yet, this perspective also
looks to health literacy as a solution (Pleasant et al., 2015). Empowerment is a key component of this
perspective, and health messages and materials must align with people’s level of skills and abilities to
be useful and not intimidating (Aldoory, 2016; Schulz & Nakamoto, 2013).
The clinical and public health paradigms for health literacy have helped define the field. Although
the two seem counter to each other, they may be able to complement each other. For example,
perhaps an initial step for health communication research is to outline the missing links between
communication and health literacy for different target populations. Then engagement strategies,
skills development, and community assets—such as local health clinics, supportive service organiza-
tions, and healthy food options—can be explored for their influence on health literacy. From either
perspective, it is imperative that research not only examine the burden of low health literacy but also
demonstrate the power of health literacy to improve individual and collective health (Pleasant et al.,
2015). In particular, research should focus on certain populations that are more vulnerable to low
health literacy and poor health outcomes.

Populations of Special Interest

The relationship between health literacy and health outcomes suggests that populations facing sub-
stantial health disparities may especially benefit from health literacy interventions. Therefore, these
populations have become of special interest to health literacy researchers. In this section, we high-
light the need to address health literacy in four of these populations: older adults, underserved health
populations, rural populations, and children.

Older Adults
One of the most significant determinants of health literacy is age (Cutilli, 2007; Keene Woods &
Chesser, 2017). Physical impairments related to aging, such as loss of hearing and vision, affect the
ability to process information (Chesser et al., 2016), which then compromises health literacy. Indi-
viduals over 65 years of age typically have more interactions with healthcare than do younger adults,
as the older adults manage health issues related to aging. Furthermore, older adults face challenges as
more and more health information is shared digitally and requires more digital literacy skills, which

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older adults tend to lack (Tsai et al., 2017). Older adults will likely continue to appeal to health
literacy researchers and practitioners as they try to adapt to and meet the needs of aging populations
(Bongue et al., 2016; Chesser et al., 2016).

Underserved Health Populations

Underserved health populations gained attention in health literacy research because such commu-
nities often experience poorer health outcomes caused by social determinants. The term “under-
served” is used to describe groups who lack access to healthcare and thus are not receiving equitable
health services and quality of care compared to other groups. Although health literacy can be a
challenge for anyone, those who come from low socioeconomic backgrounds, racial and ethnic
minorities, and those living in rural communities are considered some of the most underserved
health populations.

Socioeconomic Status
Low socioeconomic status (SES) is linked with lack of access to health services (Baker, 2014), lower
health literacy, and poorer health outcomes. Positive relationships exist between income, educational
attainment, and health literacy (Rikard et al., 2016). Additionally, unexpected health challenges
can increase economic burden and care responsibilities for individuals from lower SES households
that lack the resources to “buffer” the negative consequences of health crises (Leonard et al., 2017,
p. 125).

Race and Ethnicity

Disparities in health literacy levels affect racial and ethnic minorities, such that non-white popula-
tions have significantly lower health literacy than white populations (Dunn-Navarra et al., 2012;
Kutner et al., 2006; Rikard et al., 2016). Particularly, Black/African American, Hispanic/Latino,
Native American, and immigrant communities show the lowest health literacy levels (Dunn-Nav-
arra et al., 2012; Kutner et al., 2006). A variety of individual, physical, environmental, and social
determinants interconnect and can result in decreased health and health literacy for specific groups
(Neuhauser, 2017).

Rural Populations
People who live in rural areas grapple with different health challenges than do people who live in
non-rural areas. Although the term rural can be defined in a variety of ways based on the context,
it is often used to refer to “geographic isolation” and/or differences in population density (United
States Department of Agriculture, 2019, para.1). Rural communities have gained attention in health
literacy research because they are more likely to have poor health outcomes as a result of lower
health literacy (CDC, 2017). Zahnd et al. (2009) found that people who live in rural areas have
lower health literacy. Rural areas are likely to have fewer health resources and less opportunity for
their residents to develop health literacy.

Children
Developing health literacy in childhood can improve health into adulthood (Borzekowski, 2009).
Thus, researchers, administrators, and policy makers are paying attention to children’s health literacy
(Borzekowski, 2009; Fairbrother et al., 2016). Children make decisions about their health on a daily

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basis, and instilling health literacy early could help them navigate a complex health environment
as they age (Borzekowski, 2009; Manganello, 2008). Furthermore, children and adolescents are
increasingly presented with health information from online and school system sources. Preliminary
research into school-based interventions for young children indicates that health literacy interven-
tions show promise for improving their health literacy. Furthermore, integrating interventions into
existing curricula can address the needs of children. It also allows school systems to meet their learn-
ing requirements because the existing curriculum does not change (Rajan et al., 2017).

Health Literacy Measurements

The majority of research in health literacy has focused on the creation of measures and scales. Some
authors have claimed that the ability to measure health literacy will increase its legitimacy as a field
of study in medicine and public health (Pleasant et al., 2015). Critics, however, have argued that
by focusing on measurement, the field has created a myopic view that prevents comprehensive and
culturally sensitive frameworks to be applied to health literacy (Guzys et al., 2015).
Dozens of published studies have touted different measures, but three instruments remain the
most popular and most well-tested (Cameron et al., 2010). These measures assess functional literacy
and basic literacy skills applied to medical contexts. Cameron et al. (2010) explained how the Rapid
Estimate of Adult Literacy in Medicine (REALM) and the Test of Functional Health Literacy in
Adults (TOFHLA) have gained wide use and how the measures are highly correlated with each
other. The REALM measures health vocabulary with a 66-item survey of medical terms. The
respondent is asked to read aloud the list of words (Davis et al., 1993). The TOFHLA measures read-
ing comprehension by asking the respondent to fill in missing medical terms in sentences (Parker
et al., 1995). The Newest Vital Sign (NVS) is another popular measure of health literacy, but it is
applied to an everyday context rather than a medical one. It consists of only six questions and relies
on reading and analyzing a nutrition label from an ice cream carton (Weiss et al., 2005). Its use has
been supported in a variety of contexts as a relatively quick, valid, and reliable measure (Hoffman
et al., 2013). The NVS incorporates reading, numeracy, and information navigation (Hoffman et al.,
2013; Weiss et al., 2005).
The medical researchers who developed these measures created them primarily to measure read-
ing and comprehension of medical terminology. There have been limited attempts to capture the
multiple factors that lead someone to have high health literacy. In the previous edition of this hand-
book, Cameron et al.’s (2010) chapter outlined how health literacy measures need to align with
health outcomes. Current health environments demand more than the ability to read health-specific
information, and critics have questioned the limitations of existing health literacy measures (Orm-
shaw et al., 2013; Pleasant et al., 2011). The health literacy measures that are used the most rely on
screening participants rather than developing a multifaceted construct of health literacy (Nutbeam
et al., 2017; Ormshaw et al., 2013).
Pleasant et al. (2011) proposed guidelines to improve health literacy measurement. The guidelines
included ensuring that measures align with conceptual frameworks of health literacy and addressing
the multidimensional nature of health literacy. As a multidimensional construct, however, health
literacy continues to be a measurement challenge. An appropriate operational definition, neverthe-
less, will be crucial in order to pave a way forward for health literacy research across disciplinary
boundaries.

Applicable Health Literacy Models

Various scholars have developed conceptual models and frameworks to explain health literacy and
the factors that contribute to it (Manganello, 2008; Nutbeam, 2000; Sørensen et al., 2012; Squiers

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et al., 2012). Many of the health literacy models, however, have failed to bridge the clinical and pub-
lic health paradigms or to integrate the diverse set of concepts related to health literacy, such as self-
efficacy, motivation, and communication (Sørensen et al., 2012; Squiers et al., 2012). Sørensen et al.
(2012) reviewed 12 models that had been developed to explain health literacy and found Nutbeam’s
(2000) and Manganello’s (2008) to be the most comprehensive and heuristic. These two models are
briefly described here. Then Sørensen et al.’s proposal for an integrated model is explained.

Nutbeam’s Model for Health Literacy

Nutbeam’s (2000) health literacy model distinguishes between different types of health outcomes to
help draw connections between health interventions and the goals of those interventions. Within
this model, health literacy is divided into three different levels. Functional health literacy includes
the application of basic skills to different health contexts. Communicative health literacy involves col-
lecting health information and deriving meaning from that information when applied to dynamic
situations and interactions. Critical health literacy is when people make evaluations and comparisons
for empowered health decision-making (Ishikawa & Kiuchi, 2010; Nutbeam, 2000). Most of the
research in health literacy tests variables and contexts that are at the functional level, and the skills
being measured are typically in hospital settings or when doctor-patient communication is observed
(Aldoory, 2016). Communicative health literacy is decidedly significant for health communica-
tion scholars, as this level is where strategically designed messages and media campaigns are used to
increase awareness about and reduce barriers to health literacy. Critical health literacy is the most dif-
ficult to achieve because it requires the development of self-efficacy and agency to advocate for one’s
health and make informed choices. According to Nutbeam (2000), people can exert more power
over their own health as they progress from functional health literacy into critical health literacy.

Manganello’s Model for Health Literacy

Manganello (2008) created a comprehensive model for health literacy based on her work with
adolescents. Starting from an ecological approach, she argued that there were different levels of
influences that impact someone’s health literacy: (a) individual characteristics such as age, race, and
gender, (b) peer and parent influences, such as family values and peer support, and (c) systems, which
included healthcare, education, and media.
Individual traits, peers and parents, and systems all combine to influence someone’s health lit-
eracy. Manganello (2008) argued, however, that systems have a direct impact on health literacy and
can hinder or help to improve health literacy. When healthy and positive, all the factors within each
level can support and facilitate high health literacy. Thus, measures for health literacy should assess
the impact of systems and family, for example, on one’s decision-making about health.

Integrated Model for Health Literacy

With the dearth of comprehensive models available, Sørensen et al. (2012) proposed an integrated
model to push toward more complete conceptualizations of health literacy and include both indi-
vidual- and population-level considerations. Sørensen et al. presented four competencies: accessing,
understanding, appraising, and applying health information (see also Massey et al., 2017). These
competencies are situated within healthcare, disease prevention, and health promotion domains
(Massey et al., 2017; Sørensen et al., 2012).
Health literacy remains a ripe area for theoretical development, and health communication schol-
ars are well positioned to contribute to the body of knowledge. However, until scholars and practi-
tioners develop meaningful and comprehensive theoretical models about health literacy, it is unlikely

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that the knowledge will transcend statistical associations and individual-level reading comprehension
measures (Rüegg & Abel, 2019). There are some examples of health literacy interventions, though,
that take a more integrated and community-based approach, and we offer one of those examples
next.

Case Example of a Health Literacy Campaign

We have offered several arguments in this chapter about how health literacy should be defined and
studied by health communication researchers. First, health literacy is not just the ability to read and
comprehend text, but rather it is a comprehensive concept that encompasses several communica-
tive factors, self-efficacy, and critical thinking. Second, health literacy not only is about individual
skills but also involves family context, community supports, and mediated environments. Third,
health literacy research should focus on vulnerable health populations. Lastly, as the models we
described earlier suggest, community-based approaches will produce greater impact on health
literacy.
Community-based participatory efforts to address health literacy are not typically funded or
evaluated rigorously. Indeed, we found few such documented cases in the scholarly literature (see
Chapter 24, this volume, on community-based health interventions). We also were unable to find
published examples of health literacy campaigns that were developed by a community, for that com-
munity. But we include here a case example from a funded project that we were engaged in to illus-
trate the health literacy principles we have presented in this chapter and how they guided a locally
developed health literacy campaign.
A local health department received funding from the U.S. Centers for Disease Control and Pre-
vention to open five new primary care clinics in a medically underserved community. The second
author of this chapter was a partner with the local health department in the grant application. As part
of this structural change, we, as health communication researchers, were tasked with developing an
“on the ground” health literacy campaign to improve the chances of residents not just going to the
new clinics but knowing when to go, what to ask, and how to know when to get a second opin-
ion. This was a community with low health literacy levels, low treatment adherence rates, and high
health burdens. Thus, the concern was that they would not utilize the new clinics or take advantage
of the healthcare options. The clinic development project was called a Health Enterprise Zone, and
our campaign was the HEZ Health Literacy Campaign.
The key elements outlined in this chapter were used to design the messages and activities of the
health literacy campaign in the community. First, we invited residents, community organizations,
and local religious and business leaders to create a steering committee of decision makers to inform
the communication work. The committee met frequently, over years, to establish trust with us and
to slowly build an understanding of not only what health literacy was on a community level but
also why formative research, campaign materials, and evaluation were key elements in the process.
Importantly, the members were trained in health literacy skills and were the ones to recruit residents
to events and subsequent trainings. We discussed with the steering committee how health literacy
had several communicative components, as well as self-efficacy, critical thinking, and technological
skills. We explained what self-efficacy was and included technology skills training for those who had
need. The steering committee came up with a way to complete a door-to-door resident survey with
residents as interviewers to gather feedback about health literacy levels and the best messages to use
for the campaign.
Based on resident survey feedback, the steering committee decided what messages and com-
munication tactics worked best in the context of their lived experiences and their community. For
example, they developed a booklet to “fit in a woman’s purse” and a mobile app for cell phones.
They hosted church meetings and countywide health literacy fairs to talk to residents and distribute

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the materials. Importantly, the materials developed by the community focused on health literacy
skills development, self-efficacy, and critical thinking. For example, the booklet provided informa-
tion on how to ask questions of a healthcare provider, what questions to ask, how to deal with con-
fusion, and where to go for help navigating the new health clinics. The residents were photographed
for the booklet’s images so that the booklet would be more personalized and salient for the local
community. The booklet included spaces to fill in information when talking to a healthcare practi-
tioner and included a list of community health resources.
The community residents were also the ones who pilot tested a mobile app that presented
dynamic health literacy content. Importantly, the content did not rely on reading comprehension. In
fact, it stayed away from reading as an essential skill needed for health literacy, given the low literacy
levels of this target community. It instead emphasized oral communication and use of technology to
record doctor-patient interactions. The app also provided resources to assist with low health literacy,
such as a glossary of terms.
The community-based participatory process that was used to form the health literacy campaign
was positively perceived by both the residents and the health department. Feedback indicated the
importance of establishing trust with the communication researchers and medical clinic staff, invest-
ing time in creating the partnerships with the residents, valuing community feedback that went
into the materials and messages, and encouraging active engagement and communication tools as a
result. In the end, the campaign showed promise in addressing the health literacy needs of the target
community. Local community organizations, churches, and community health workers requested
hundreds of booklet copies. The health department distributed 10,000 copies to residents. Residents
reported levels of confidence in asking questions and getting second opinions, whereas before they
did not have that confidence. Also, the steering committee decided to continue to meet beyond the
funded project time frame to continue ongoing health literacy projects for the community’s residents
(Trivedi & Aldoory, 2018; Trivedi et al., 2017).

Future Research Directions

Although health literacy research has been moving beyond functional health literacy for some time,
there is still work to be done to ensure that such inquiry develops robust theories and conceptualiza-
tions. We suggest three areas for future research. Specifically, more focus should be placed on critical
health literacy, community-based approaches, and the role of digital media in health literacy.

Critical Health Literacy

Researchers need to move past functional descriptions of health literacy and focus on what is miss-
ing from health literacy research, who is privileged by it, and what needs to be changed. Critical
health literacy can inspire social change (Chinn, 2011). Chinn (2011) divided critical health literacy
into three parts. First, health information is to be critically analyzed for not only what it conveys
but also what is invisible or for who is voiceless. Second, social determinants that may be affecting
health literacy need to be interrogated and acknowledged. Third, Chinn believes in the importance
of collective action and engagement by target populations, health professionals, and others who can
influence health literacy and health outcomes.
Addressing critical health literacy would allow researchers to question the systems that have privi-
leged affluent populations. White populations, high SES communities, and other privileged health
populations have had access to the best healthcare and have the highest health literacy levels. Critical
health literacy suggests that researchers and practitioners can take action to address the inequities that
exist for people with lower SES, from diverse racial/ethnic backgrounds, and from other marginal-
ized identities that have lower health literacy.

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Community-Based Approaches
This chapter described an example of a community-based approach to a health literacy campaign,
although these types of health literacy campaigns are still rare. Community-based participatory
approaches give community stakeholders an active role in shaping the research, messages, and strate-
gies in health communication that affect them.
Importantly, community-based approaches to health literacy expand the definition and meas-
ures of health literacy. They recognize that health literacy is not just an individual-level construct
measured by a single skill such as reading. Instead, health literacy becomes a community concept,
a community problem to address, and a set of resources to build capacity that helps people under-
stand health information and make better health decisions (Neuhauser, 2017). Community-based
participatory approaches can lessen participant attrition in research studies, produce more sustainable
health interventions, and increase cultural sensitivity of messages (Minkler, 2005). Researchers can
also address critical health literacy using community-based approaches because such approaches align
with an empowerment model and situate communication interventions within people’s everyday
lived experiences (de Wit et al., 2018).

Digital Media
Medical professionals used to be the main source of health information for almost everyone, but as we
know, this is no longer the case for many populations (Ishikawa & Kiuchi, 2010). Although the Inter-
net has made health information readily available, information can still be difficult to understand, and
messages from different sources can conflict. Experts have outlined the ways in which digital media can
serve as an asset to health literacy, particularly with video and other digital technologies that captivate
audiences, communicate in nontraditional ways, and reach a variety of groups (Roberts et al., 2017).
Although the ubiquity of health information might improve health literacy, individuals must play
increasingly active roles in evaluating sources, vetting health information, and comparing conflicting
information. eHealth literacy has been defined as the many skills that are essential to searching for,
obtaining, evaluating, and using electronic information to make health decisions (Norman & Skin-
ner, 2006; Paige et al., 2017). Norman and Skinner (2006) presented a model of eHealth literacy that
included the following constellation of literacies: traditional literacy, computer literacy, media literacy,
science literacy, information literacy, and health literacy. Although electronic and online forms of
health communication have in some ways improved access to health information, researchers have
found that these forms of information still present challenges to people with low eHealth literacy
and people who distrust online health information (Paige et al., 2017). Furthermore, online health
information may present an opportunity for confirmation bias, where people only search for or accept
information that already aligns with their beliefs (Meppelink et al., 2019). Thus, it is crucial to under-
stand how people assess and use online health information to make health decisions, particularly as
more and more health information moves to electronic and digital formats. However, social media can
threaten health literacy by spreading misinformation related to vaccination, untreated mental illness,
and a host of other health issues (Gold et al., 2019; see also Chapters 21 and 22, this volume). Because
of the complex nature of digital media environments, the health, education, and communication fields
must work together to accumulate lessons learned, optimize the benefits of new media, and address
the challenges that the media now present for new forms of health literacy (Gold et al., 2019).

Conclusion
In this chapter, we provided several arguments about health literacy. First, health literacy is not just
the ability to read and comprehend text, but rather it is a comprehensive concept that encompasses

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several communicative factors, self-efficacy, and critical thinking. Second, health literacy is not only
about individual skills alone but is also about family context, community supports, and mediated
environments. Third, health literacy research should focus on vulnerable health populations that
require greater support and clearer communication to aid them in making health decisions. Finally,
the models of health literacy suggest that community-based approaches will produce greater impacts
on health literacy and, ultimately, on the health outcomes of community residents.
Health literacy has played a central role in health communication research because of the ways it is
influenced by communication and can influence how people communicate about their health. This
chapter has outlined the definitions, models, and main areas of research in health literacy. It reviewed
an applied health literacy intervention and offered future research directions. We anticipate that health
literacy will continue to challenge communication researchers as the health information landscape and
health systems become increasingly digitized. However, we also anticipate that the time and attention
devoted to health literacy, particularly as a multidimensional asset to empower people to make health
decisions, will be worthwhile and will make meaningful differences in people’s health outcomes.

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 29
COMMUNICATION, HEALTH,
AND EQUITY
Structural Influences
Kasisomayajula Viswanath, Rachel F. McCloud, and Mesfin A. Bekalu

That disparities in health among population groups are persistent and unyielding is arguably the
best-documented phenomenon in population and individual health. These inequalities manifest
along the fault lines of gender, age, class, race and ethnicity, and geography in a variety of disease
conditions and across the entire healthcare continuum—from prevention to survival and end
of life. Several models and frameworks have sought to provide the reasons behind the dispari-
ties, suggesting how “social determinants” of health (SDOH) may contribute to unequal health
outcomes directly through maldistribution of fiscal, social, and health resources or indirectly
through biological and psychosocial factors such as stress or racism (Krieger, 2011; Williams
et al., 2019).
Although the focus on social determinants is appropriate, other phenomena such as communica-
tion have received insufficient attention as a factor that contributes to disparate health outcomes, as
well as a promising force for change in bridging these disparities. That the centrality of communi-
cation in the debate on health inequalities1 has not been raised is somewhat perplexing given how
information and communication technologies (ICTs) have upended social life with transforma-
tive impact on how we live, work, and play and with profound implications for health and health
inequalities (Viswanath et al., 2013). And, more importantly, even much less attention has been
paid to communication inequalities, differences among individuals, social groups, and organizations
in access to, processing of, and using information to better one’s health and well-being (Viswanath
et al., 2013). We contend that communication inequalities are a type of social determinant and are more readily
addressable than other SDOH.
The question then is how we elucidate the relationship between communication and health, with
a specific focus on how communication, particularly communication inequalities, may exacerbate
health disparities and whether bridging communication inequalities could help narrow disparities in
health. We contend that investigating the myriad communication factors and their interactions with
health-related outcomes at multiple levels requires going beyond debates about empirical or critical
theoretical traditions to examining a broader cascade of factors through well-articulated theoreti-
cal frameworks and fundamental questions about social power. The goal of the chapter is to discuss
how selected communication factors at different levels contribute to health and health inequalities,
discuss gaps in research, and highlight why a better understanding of communication’s role in health
is critical for policy and practice.

426  DOI: 10.4324/9781003043379-36

 Communication, Health, and Equity

Social Drivers of Inequalities: A Precis

On almost any risk factor, disease condition, or health outcome, adverse effects on morbidity
and mortality are disproportionately borne by certain social groups; these groups include peo-
ple from lower socioeconomic positions (SEP), racial and ethnic minorities, different genders,
and people of different geographies such as rural residents or neighborhoods within communi-
ties (Meyer et al., 2013). Non-Hispanic Blacks and Hispanics have a higher prevalence of, and
chance of dying from, most chronic diseases than have whites, and disparities are also observed
by income and education (Meyer et al., 2013). Equally important, these disparities are more
pronounced when people share multiple social status categories such as race or ethnicity and sex,
or sex and socioeconomic position—a widely known phenomenon referred to as intersectionality
(Crenshaw, 2017).
An expansive and, by now, exhaustive body of work under the broad umbrella of social epidemi-
ology—with contributions from public health, health communication, and social sciences—offers
frameworks, models, and theories to explain these well-documented disparities in health (Berk-
man & Kawachi, 2015; Krieger, 2011). Briefly, this body of work establishes several tenets about the
relationship between social determinants and health:

• Documents that factors external to the medical realm, or more prominently as social determi-
nants of health, influence individual and population health (Braveman et al., 2011);
• Categorizes the SDOH as downstream and upstream factors. The downstream factors include
characteristics measured at the individual level, such as race and ethnicity, gender, income,
employment, health insurance, and education. The upstream factors include structural-level
social determinants, such as neighborhood levels of poverty (“concentration”), “food deserts”
(lack of availability of healthy food options), pollution or air quality, residential segregation by
race or ethnicity, social justice, and social risks (lack of education, employment and housing at
group or community level), among others;
• Proposes that these upstream factors may influence downstream social determinants including
knowledge, beliefs, and health behaviors in the causal pathways toward health status, encourag-
ing the move to create policies to address SDOH.

A few additional points are worth noting. One, some causal pathways connecting upstream to
downstream SDOH have been better documented than others, which suggests that pathways to
health are complex, cumulative, and multilevel, including social, individual, and biological levels. Two,
the causal factors are interactive, and an understanding of population and individual health is better
explained at the intersection of these social determinants. Three, addressing SDOH requires solutions
at a structural level in the form of policy and practice changes, which offer an opening for the role
of communication in advocacy and agenda setting to enact those changes.

Ecological Influences, Health Communication, and Inequalities

Inequalities in health, like other complex phenomena, are products of developments at multiple
levels and over time; these inequalities are sown much earlier than they manifest. Although the
inventory of social determinants includes factors at individual levels, such as one’s race or educa-
tional status, it is also clear that the effects of these variables on health are moderated or exacerbated
by factors at a higher level; examples include cultural influences such as racism or sexism or policy
decisions such as taxation or zoning. It is this recognition that the ultimate influences on individual

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 Kasisomayajula Viswanath et al.

and population health are multilevel and that factors across levels interact with each other that has
led scholars to focus on ecological frameworks or models (Golden & Earp, 2012).
Because researchers are bounded by either the discipline of their study or the nature of communi-
cation practice, attention to what drives illness and health and subsequent interventions to promote
health and well-being have focused generally on one level. An ecological perspective, however,
calls attention to how people interact with, react to, and negotiate with larger social, structural, and
cultural forces and how individual agency confronts social structure. Sallis and Owen (2015), in a
review of ecological models, laid down some principles that are relevant to elucidating the role of
communication in health and health disparities.
One, variables at all levels are important, although the degree of influence of each level and
the conditions under which they have influence require greater specification. For example, within
communication, although exposure to health information may be an individual choice based on
preferences, backgrounds, and experiences, it is also driven by such environmental factors as influ-
ences of social networks, availability of media channels in a given market, and access to information
resources. Two, individual health communication behaviors are influenced by variables at multiple
levels and across levels. Motivation to maintain a healthy diet is an important factor in staying healthy
but is also influenced by targeted advertising promoting consumption of sugar-sweetened beverages;
normative influences in one’s social networks; availability of, access to, and affordability of healthy
food choices; and local zoning laws that determine grocery markets siting (Gortmaker et al., 2015).
Three, larger social and cultural contexts are significant determinants of health behaviors potentially
leading to health disparities.
In Figure 29.1, we propose a pathway through which these multilevel factors may interact with
communication inequalities to impact inequalities in health and well-being. Throughout this chap-
ter, we will illustrate the ways in which upstream societal forces, such as culture, policy, and con-
centration of poverty at the community level, along with the influences of social networks and
individual factors, may determine who is able to access, engage with, process, and benefit from
health information.

Levels of Influence on Dimensions of Health

Health and Well-being Communication Inequalities Outcomes

Culture

Policy
Engagement
Community,
Organizations Inequalities
in health and
Social Access Ability to Act well-being
Networks outcomes

Individual Processing

Figure 29.1 Communication and equity: Structural influence model

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Access to information, a key first step in the communication process, relies on a relationship
between place, economy, and policy, particularly in the case of broadband availability. Complex,
multilevel forces may impact engagement with (e.g., paying attention to or actively seeking health
information) and processing of (e.g., understanding the content delivered in health messages or cop-
ing with a flood of information) health-related messages. Furthermore, not all message recipients
have the ability to act upon the information presented in a message; barriers ranging from a lack of
community resources, pressures exerted by social norms, or the stress of competing priorities may
serve to impact the audience’s ability to perform the health behaviors promoted in communica-
tion campaigns. Thus, disseminated health information may not lead to equal benefits of increased
knowledge or health behaviors for all groups and may exacerbate inequalities in health and well-
being outcomes. This disparate flow of information often provides opportunity for more harmful
messages to more successfully reach vulnerable groups. For example, tobacco advertising is often
targeted toward racial minorities, such as menthol advertisements directed toward Blacks (National
Cancer Institute, 2008), leading to heavier consumption of menthol cigarettes in this group. Tobacco
smoking portrayals in movies remain a potent influencer across the globe in general and in low- and
middle-income countries in particular (Bekalu & Viswanath, 2018; Viswanath et al., 2010). At a
community level, the heavier density of tobacco retail outlets in low-income areas leads to greater
exposure to tobacco advertising and products, and thereby greater tobacco use in these areas (Lee
et al., 2020; National Cancer Institute, 2017).
However, the link between multilevel context and health outcomes is not a unidirectional rela-
tionship; ample research has shown how inequalities in health can interact with ecological levels of
influence, serving either to deepen inequalities or to foster community mobilization or other efforts
in response to these disparate outcomes to facilitate change. For example, changes in individual
smoking-related knowledge, beliefs, and behaviors over time have provided support for more restric-
tive tobacco control policies, setting the environment for greater regulation and restriction on the
industry’s practices, strategies, and tactics. The renowned “Truth” campaign engendered awareness
of tobacco industry deception, leading to a reduction in the number of youths who initiated smok-
ing and promoting cessation (Farrelly et al., 2002).
The following sections explore a selection of ecological factors that may influence communica-
tion inequalities to bring about inequalities in health. Although community/organization-level fac-
tors are not discussed in their own section, the implications from these influences, such as poverty or
education quality, as well as the importance of gathering community input and support, are woven
in throughout, demonstrating how levels are linked as they exert influence on, and are potentially
influenced by, communication.

How Culture and Communication Influence Health and Inequalities

Culture is the set of distinctive features of a social group, such as spiritual, material, and emotional
features, that are reflected in that group’s values, beliefs, norms, and practices (Kreuter & McClure,
2004). The interplay of cultural identity, relationships, and cultural empowerment places culture at
the connection of how individual perceptions and actions regarding health are shaped and defined
by upstream factors (Iwelunmor et al., 2014), such as those mentioned previously in this chapter.
The cultural characteristics of any group, including values and beliefs, may be directly or indirectly
associated with health-related priorities, decisions, and behaviors (Kreuter & McClure, 2004; Tan &
Cho, 2019).
Health communication messaging often relies on cultural characteristics of an audience to inform
message tailoring (Kreuter & McClure, 2004). Language is a key feature within culturally focused
health communication programs and strategies; the formal language (e.g., English, Spanish), use
of vernacular language, and the way messages are shaped using normative speech styles within that

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culture can have key impacts on their ability to be accessed and understood (Bonvillain, 2011).
Beyond words on a page, using culture as a way to contextualize and understand a group’s health
literacy (the ability to understand, evaluate, and communicate information about health; see Chap-
ter 28, this volume), and particularly how culture shapes responses to health issues, may help alleviate
health disparities by allowing researchers to more fully understand the literacy levels of the popula-
tions they are trying to reach (Mantwill et al., 2015).
There is also a need to consider the “deep structure” of culture, defined as the cultural values,
traditions, and cultural identity, along with the historical and social environments, that may impact
a population’s health behavior in public health program planning and implementation (Tan & Cho,
2019). When communications about health do not account for the life situations of audiences, such
as their cultural beliefs and practices, messages may be ineffective; this issue is often amplified for
messages that attempt to target marginalized populations (Neuhauser, 2017). Errors in properly
identifying culture, such as conflation of culture with race and ethnicity or the focus on certain
health-harming cultural beliefs and behaviors, and creating interventions based on these assumptions
can lead to ineffective interventions that do not address—or in some circumstances exacerbate—
health disparities through their narrow and improperly defined focus (Kagawa Singer, 2012; Kreu-
ter & McClure, 2004). In contrast, a focus on addressing the deep structure of culture within health
communication research and practice may serve as an avenue to address health disparities. For exam-
ple, there is evidence to support that deep structure components are linked to central processing of
information, influencing the understanding and interpretation of health communication (Singelis
et al., 2018), with tailoring that focuses on the deep structure of culture having a greater impact
on persuasion in communication interventions targeting minority groups (Huang & Shen, 2016).
In addition to accounting for cultural beliefs, culturally rooted health messages should consider the
ability to act on information, particularly due to structural or social barriers that may be present for
that culture (Viswanath et al., 2013), and link culturally tailored messages with how to access avail-
able resources such as nearby free clinics (Chen et al., 2018).
Another component of the deep structure is cultural norms (Huang & Shen, 2016), which are
“socially negotiated and enforced rules of conduct that maintain the collective order” (Rimal & Lap-
inski, 2015 p. 404) and often serve as guidelines for what is socially acceptable. Cultural norms can
link individual beliefs and behaviors with larger social contexts and provide guidance on individual
perceptions of how other group members are behaving (Rimal & Lapinski, 2015). Communica-
tion acts as a central part of this process as it is the way through which members of a social group
understand, negotiate, and accept these norms (Rimal & Lapinski, 2015). The direct link between
norms and communication inequalities is not well studied. However, scholars are now integrating
the power of norms as a way for larger, systemic change to address disparities, providing greater
opportunities for individuals to have agency and influence within their culture and to shift norms to
provide greater power to health messages and communication campaigns (Yamin et al., 2019). This
highlights a key factor in mobilizing underserved communities: Addressing health disparities will be
most successful by focusing on not only the availability of health resources but also the norms sup-
porting those changes (Thompson et al., 2016).
More research is urgently needed to capture the impact of structural, cultural, and racism-related
factors to create health communication research and practice that addresses issues from an ecological
perspective (Tan & Cho, 2019). Beyond considering culture as a singular influence, aspects such as
international travel and global media have given rise to an environment that may lead to an individual
identifying with multiple cultures—and levels of cultural identity may shift and change over the life
course (Tan & Cho, 2019). Given the influence of culture on health, the World Health Organiza-
tion has called for a greater focus on the fluid nature of culture and its intersection with factors such
as socioeconomic status, age, sexual orientation, and gender (Napier et al., 2017). Understanding
culture and its interplay with health disparities at a structural level allows for culture, when defined

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appropriately, to be leveraged as a bridge for health communication to address the more changeable
components of the determinants of health.

Socially Constructed Harms: Racism

Key socially constructed drivers of health and communication inequalities such as racism, sexism,
and heterosexism, among others, all of which often separate people into superior and inferior
groups and through which unjust treatment reverberates through social inequalities down to
biophysical harm, are also central concepts for consideration (Krieger, 2019). Such concepts,
although heavily intertwined with beliefs and societal and cultural norms, are also rooted in his-
tory and real-world conflicts over power and property. The structural implications of these beliefs,
such as segregation and limited access to goods, services, and information, as well as the impacts
on mental and physical well-being, have implications for communication at multiple levels (see
Figure 29.1).
One key example that illustrates the interplay of historical, structural, cultural, and communica-
tion forces is racism and its impacts on communication and health. Racism is an organized system
that often leads to the development of negative attitudes, beliefs, and stereotypes of groups by both
individuals and institutions (Williams & Mohammed, 2013a). Racism influences health and commu-
nication inequalities through multiple pathways. These include several upstream channels through
which the implications of racism, in the way it has both structured society and shaped messaging,
may affect the ability to receive, process, and act upon health information. Institutional racism serves
to reduce actual availability of resources at the structural level, restricting availability of the basic
needs that contribute to health (Bailey et al., 2017; Williams & Mohammed, 2013a). The historical
construction of segregated cities and towns has led to the presence of food deserts that limit access
to healthy foods. These are more prevalent in low-income Black neighborhoods, which impairs the
ability to act upon health-related messaging about food and nutrition. Advertising agencies have
long targeted vulnerable groups such as Blacks with tobacco and alcohol messaging, taking advan-
tage of the stressors these populations face to offer fixes in the form of harmful substances (Krieger,
2019; Lee et al., 2020; McCloud et al., 2017).
Communication, in some forms, may be a direct contributor to exacerbate or alleviate cul-
tural racism, as representations of race in popular culture may influence the thoughts, feelings, and
behaviors of both the dominant and the subordinate groups (Krieger, 2019; Williams & Moham-
med, 2013a). The mass media in particular play a role in the increase or reduction of prejudice,
stereotypes, and discrimination, often on a large scale, with several studies showing the power of
television to alter deeply embedded cultural beliefs about race either positively or negatively (Wil-
liams & Mohammed, 2013b). In turn, the communication of racist beliefs can also influence the
attitudes and practices of the targeted social groups as they internalize this messaging (Krieger, 2019).
On an individual level, this internalized racism, or self-stereotyping, can lead to lower self-esteem
and psychological well-being (Williams & Mohammed, 2013a), with actions such as active coping
and vigilance and the tensions that arise from self-stereotyping negatively affecting health (Viruell-
Fuentes et al., 2012).
The impacts of stress, anxiety, and impaired decision-making due to discrimination and stereo-
type threat have profound implications for the ability to process and act upon health information.
For example, communication research has long shown the role of emotions in influencing infor-
mation processing, message acceptance or rejection, and information recall (Nabi, 1999). How-
ever, although studies on emotions in information processing and message acceptance or rejection
often focus upon the emotional experience provided by the media message to which the individual
attends, they hardly account for any other external or distant stimuli or stressors that influence
individuals’ processing of a given piece of information. These other stimuli or stressors may include

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social, economic, or environmental factors that influence directly or indirectly how an individual
processes, understands, and responds to a given piece of information.
For example, Mullainathan and Shafir (2013) posit that scarcity taxes the mind or steals mental
capacity wherever it occurs. They argue that if the mind is focused on one thing, such as hunger
or poverty, other abilities and skills, including attention, often suffer. As such, although the impact
may differ depending on the type and magnitude of scarcity one experiences, scarcity fundamentally
reduces cognitive resources that one is able to allocate to process and decipher a given piece of infor-
mation. This explanation provides an interesting pathway for explicating how stressors such as racism
or poverty may have an impact on how communication messages are attended to and processed,
leading to health inequalities.

Policies, Inequalities, and Health Communication

Inequalities are not inevitable but are socially constructed and are a direct outcome of how social
structures are designed, organized, and operated. For example, one of the most consistent findings
in health is that schooling (“education”) matters. Irrespective of any disease condition or any stage of
the health continuum, the association between education and health is arguably one of the strongest
findings in the literature (Glymour et al., 2014). In communication, too, a variety of communication
measures are strongly associated with schooling (Viswanath, 2005).
What is not widely recognized, however, is the underlying reason for these associations. The
quality of schools that provide education is primarily dependent on structural factors such as
wealth, neighborhood poverty, and residential segregation (Duncan & Murnane, 2011). As an
example, in the United States, property taxes ensure that students in wealthier school districts
enjoy more privileges in education than do children in relatively poorer districts. Findings such as
these have led researchers and activists to pay greater attention to social policies and their role in
health disparities. For example, Thornton et al. (2016) argued in their review that policy inter-
ventions targeting early childhood education, community development, housing, lower income
levels, and employment could blunt the divides across social groups and the adverse effects of those
divides on health.
Communication inequalities, too, start with advantages that are baked into the design of social
structures (see Figure 29.1). Communication policies of a given system influence such issues as
availability and affordability of broadband and other telecommunication services, which thereby
influence access to Internet-based health information (Viswanath et al., 2013). For example, recent
reports show that rural Americans remain less likely than urban or suburban adults to have home
broadband or own a smartphone, although they have generally made large gains in adopting digital
technology over the past decade (Perrin, 2019). Similarly, among other factors, Internet use is influ-
enced by consistency and reliability of services, access to devices, and pricing, all of which can lead
to differences and disparities. For example, although equipment to access the Internet has grown
cheaper, which allows most people to make the one-time investment, recurring expenditures such as
for data use may keep certain groups from lower SES away from availing digital services (Viswanath
et al., 2012).
But access to and use of broadband Internet is a multilevel and reciprocal phenomenon between
communication and social policies at the structural level and individual behavior level (see Fig-
ure 29.1). In analyses that drew from the U.S. Census Bureau’s Current Population Survey and
National Broadband map, Whitacre et al. (2015) attempted to explain the gap in broadband adop-
tion between urban and rural areas. They reported that both supply and demand sides influence the
adoption of broadband. Although infrastructure availability explains more than one-third of the vari-
ance, other characteristics such as education, income, race, and age also contribute to the adoption
or the lack of it. The inference is to focus on both sets of factors to promote broadband adoption.

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This brief review suggests that both communication and social policies may aid in bridging com-
munication inequalities and health disparities even while individual agency matters.

Social Networks, Interpersonal Communication, and Health Inequalities

The link between social networks and health has long been established; people are interconnected,
and so is their health (Smith & Christakis, 2008). Research on social networks has noted the capac-
ity of networks to provide access to valuable resources (Dimaggio & Garip, 2012). Social networks
enable individuals and communities to form and maintain social capital, which allows individuals to
draw on resources such as information and social support from other network members (Viswanath,
2008). People who are members of a given social network have access to information, social sup-
port, and other resources such as other network members’ skills and knowledge due to their net-
work membership or social connections. Such access to resources, in turn, is linked to a variety of
positive social outcomes such as trust and reciprocity that engender better health (Nieminen et al.,
2013). In the realm of health communication, social network effects may refer to social learning
effects that operate when network members, such as mavens (see later), circulate health information
that increases the utility and benefits of a new behavior or reduces its cost or risk. Social networks
may also have a more direct impact on health behaviors through modeling of healthy or unhealthy
behaviors or lifestyles from network peers.
Unfortunately, that social networks influence health means individuals belonging to different
social networks can have different health outcomes, depending on the resources afforded by their
respective networks. For example, individuals from low SEP groups are less likely to access relevant
health information and resources from their homogenous social networks. Because of this, research-
ers argue that homogenous social networks may have the potential to exacerbate socioeconomic-
based health disparities. For example, Pampel et al. (2010) argue that because high-SES individuals
adopt healthy behaviors and associate with other high-SES individuals, their networks of social sup-
port, influence, and engagement promote health and widen disparities. Similarly, Freese and Lutfey
(2011) argue that network effects (including communication) may contribute to the greater capacity
of high-income individuals to exploit advances in medical science, causing such advances to widen
rather than reduce disparities in health outcomes (Dimaggio & Garip, 2012).
Although most of the evidence on the role of social networks in health comes from studies of
“offline” social networks, researchers now argue that online social networks also have the potential
to enhance the opportunity to form and/or maintain offline social capital (Ellison et al., 2007; Nabi
et al., 2013). For example, Ellison and colleagues found that apart from the bonding (within a group)
and bridging (across groups) forms of social capital, online social network tools enable individuals
to remain in touch with a social network after physically disconnecting from it and thereby benefit
from a form of social capital called maintained social capital. A recent study in the United States also
found that social media networks may be helpful to promote social and psychological well-being,
while also drawing attention to the detrimental effect of emotional connection to social media sites
on health and well-being (Bekalu et al., 2019). This study also suggested that the benefits and harms
associated with social media use, such as positive or negative impacts to mental well-being, might
be patterned by demographic, socioeconomic, and racial/ethnic identities. Although the harms
associated with social media use seemed to be higher among older, less educated, and minority
racial/ethnic groups, the benefits seemed to be generally higher among younger, better educated,
and white racial/ethnic groups. However, research in this area is scarce and inconclusive in general,
and little is known regarding whether and how online social networks are associated with health
disparities in particular.
Health communication research on social networks and/or interpersonal sources of health infor-
mation has looked at the role of health mavens (Hayashi et al., 2020; Kontos et al., 2011) and health

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e-mavens (Sun et al., 2016). Health (e-)mavens are individuals with a general interest in a health
topic and who actively participate in health information exchanges in their offline and online social
networks (Hayashi et al., 2020). Health mavens have been shown to be important brokers of health
knowledge, and it has been suggested that they could serve as an ideal point of intervention in
attempts to maximize exposure to health messages and modify perceptions and beliefs in a commu-
nity or social network. However, mavens in low SES and minority groups have been shown to be
no different from non-mavens in maintaining accurate beliefs on some health-related topics (Kontos
et al., 2011).

How Ecological Influences Manifest at the Individual Level

At the individual level, the main health communication outcomes include an individual’s health-
related cognitions, beliefs, and behaviors, which are posited to influence health. Health promotion
and disease prevention programs often target these factors through communication interventions.
Historically, most research and interventions in health communication have predominately focused
on these factors with little or no emphasis on social and environmental factors (Viswanath &
Emmons, 2006; Viswanath et al., 2007). The influence of communication on health disparities may
be studied through communication inequalities along the dimensions of engagement with health
information and platforms and channels that provide health information, how information is pro-
cessed, and communication effects (see Figure 29.1).
These communication antecedents—health information exposure, attention, and seeking or
avoidance, as well as processing and use—may have an impact on downstream factors such as knowl-
edge, beliefs, and behaviors along the pathway to health disparities. The knowledge gap hypothesis
research program, for example, has explicitly implicated social class and community structure as
central explanations for the finding that information flow into a system generally widens rather
than narrows health knowledge gaps among social groups. Since the original formulation (Tichenor
et al., 1970; Viswanath & Finnegan, 1996), a number of studies have identified different factors at
individual (concern, attention, salience, and participation) and structural levels (e.g., community-
boundedness and community conflict) that may be responsible for the knowledge gap phenomenon
(Viswanath & Finnegan, 1996).

Access to and Engagement With Health Information and Platforms

A partial explanation of health disparities can be given in terms of differential engagement with com-
munication channels among different socioeconomic, racial and ethnic, and geographic groups (see
Figure 29.1). Forms of engagement such as access to, use of and time spent with different media,
health information seeking, and health information avoidance vary across social groups. Studies have
documented that low SEP individuals are less likely than higher SEP individuals to seek health infor-
mation from any source, even when diagnosed with serious health conditions (McCloud et al., 2016).
Furthermore, a growing body of evidence shows that, beyond access, socioeconomic-based dis-
parities exist in how individuals use the Internet. Although recent reports show an increasing trend
in Internet access, with 90% of American adults using the Internet for various purposes (Anderson
et al., 2018), crucial questions persist with regard to disparities in “how” rather than “if ” people
use the Internet. Although the full extent of the impact is not yet known, the COVID-19 crisis
has made it clearer that the digital divide is indeed a longstanding and unbridged chasm between
people of different socioeconomic status and different geography (Gross & Opalka, 2020; Viswa-
nath et al., 2020).
The explanations for the digital divide lie, partly, in larger structural factors such as communica-
tion policies that influence broadband penetration in a given geography but also because of choices

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made by individuals. These choices, in turn, are influenced by cross-level characteristics such as
education, income, and race/ethnicity (Whitacre et al., 2015). Data from the Pew Research Center
(2014) also highlight this point. People with higher education are generally likelier to see positive
benefits of the Internet than are those with less education, even though majorities in many nations
see an overall positive benefit. It is not just a perception of the benefit, however. Our own work on
addressing the digital divide, Project Click to Connect, repeatedly documents other challenges among
those who are from a lower socioeconomic status: Time constraints, family dynamics and conflicts
over the equipment, lack of social and technical support, connectivity issues, problems with usabil-
ity, frustrations with information search, and technical assistance have all emerged as critical factors
(McCloud et al., 2016).

Communicating Disparities: A Multilevel Phenomenon

In some ways, the label “social determinants” of health is unfortunate because it communicates
a lack of mutability given how much effort is needed to address issues of class, place, or race and
ethnicity. Obviously, some types of determinants are much more readily addressable, whereas others
require a heavier lift. Whatever it is, tackling structural-level changes, whether they are changes in
communication, social or health policies, or regulations, requires public support. Any changes will
incur social or financial costs, and these may be differentially borne by various groups or institu-
tions. For example, raising taxes to equalize educational opportunities may find opposition among
those whose taxes are increased. The criticality of public opinion and public support for policy
changes cannot be overemphasized (Lynch & Gollust, 2010). Public opinion and communication
have a direct impact on health, as is evident from support for and against healthcare reforms (Soroka
et al., 2013).
It is important to consider whether the condition of disparities is defined as a social problem and
to determine the causal attributions made to describe why the disparities exist. Social problems, by
definition, are considered unjust and unacceptable (Mauss, 1975). If causal attributions are made to
individual responsibility, then the solutions, too, are likely to be offered at the individual level. For
example, in one survey for our Project IMPACT (Influencing the Media and Public Agenda on Cancer
and Tobacco Disparities) study, when respondents were asked to rank why some people suffer from
poorer health than others, “personal health practices” came up first, followed by social determinants
such as insurance and environment. This is not surprising given how news media cover health. In an
examination of local news media coverage of health, out of 650 news stories, just 3.2% of them dis-
cussed health disparities (Nagler et al., 2016). Additionally, much of the discussion focused on indi-
vidual reasons for health disparities such as “poor dietary habits” rather than social contexts such as
availability of food choices. A crucial question, then, is how to generate support among the publics
by making them aware of differences in health among social groups either through governmental,
academic, media, or grassroots advocacy (Niederdeppe et al., 2013).
The advantage of using an ecological framework for communication with the primacy on social,
structural, and cultural communication drivers lies in illuminating the factors that lead to dispari-
ties and the potential for addressing them. These drivers allow for adoption of population-level as
opposed to solely individual-level strategies; population-level strategies are more sustainable than
individual-level strategies. Yet, except in a few cases such as tobacco control or school-based physi-
cal activity, multilevel interventions are rare because of the time and resources necessary to design
and execute them (Golden & Earp, 2012). Population-level strategies, although they broaden the
reach, have also shown that certain groups do not benefit equally from health-promoting strategies
and policies. In fact, they have potential to cause even more disparate outcomes. This demonstrates
the importance of understanding the complex interactions among levels. Last, in a related vein, the
more recent attention to modeling complex systems to study health behaviors also applies to health

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communication given the current media ecology that encompasses mass, interpersonal, and social
media channels and the interaction among them (Kaplan et al., 2017).
This is where translational communication matters (see also Chapter 3, this volume). Transla-
tional communication is the study and practice of how research from controlled settings is translated
for public consumption to influence policy and practice. The definition may imply a linearity of
communication from experts to consumers, but in practice successful translational communica-
tion is a reciprocal and participatory process through which the public, policy makers, and media
influence each other. Collective mobilization then depends on how the messages about disparities
are constructed and disseminated to build support for social changes (Bigman, 2014). This process
actively engages members of a culture or group to understand their traditions, customs, and beliefs
and how to incorporate these into communication strategies, research, and practice (Butel & Braun,
2019). In turn, reaching beyond the health sector for partners and encouraging social participation
and empowerment from stakeholders of all levels of the ecological model may be the levers for more
systemic mechanisms for change (Levy et al., 2020).

Conclusions
A clearer elucidation of how communication fits into the larger discussion on social determinants of
health is hindered by the inadequacy of our methods and theory. For example, the pathways through
which communication connects larger forces such as social or economic policies on education,
housing, or racism to influence individual and population health across levels requires greater theo-
retical integration and sophistication. Although current work, selectively cited in this chapter, has
done much to advance knowledge of communication’s influence on health outcomes, much more
remains to be done. There are also many methodological challenges. One of them is data absentee-
ism (Lee & Viswanath, 2020), a lack of representation of underserved groups in most experiments
(field or lab), in large scale surveys and in big data. The problem of underrepresentation is often
dismissed as a challenge in reaching underserved groups because they are “hard to reach.” However,
these groups are “hardly reached” given our unwillingness to invest in resources to recruit and retain
them in our studies (Nagler et al., 2013). Any inferences from such undersampled studies are there-
fore inadequate and partial, posing a serious impediment to our understanding of communication
in, and of, health disparities and our attempts to address them.
Another issue for consideration is how we define health. The 1948 Constitution of the WHO
defines health not as an absence of disease but as a complete state of physical, psychological, and
social well-being. Yet much research in health communication has been on diseases and risk factors
rather than well-being and the assets that foster it. What roles communication plays in broader well-
being remain to be explored.
The review so far on how larger social factors shape individual and population health and the
role of communication in either exacerbating or bridging health inequalities makes it clear that
understanding communication’s influence across multiple levels is critical, as it is a potent force in
addressing the divides. Additionally, we argue that addressing communication inequalities, one of the
more addressable social determinants, offers great promise for equitable health. Given the growing
inequalities globally, there is a “fierce urgency” for communication scholars to address the inequali-
ties through theory, policy, and practice.

Note
1. Although we will use both “health inequalities” and “health disparities” in this chapter, we must note that
some have noted distinctions between these terms and explicit preferences for one or the other.

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 30
INTERCULTURAL HEALTH
COMMUNICATION
Rethinking Culture in Health Communication
Elaine Hsieh

Culture is an essential factor in shaping individuals’ understanding and behaviors in healthcare settings.
Traditionally, health communication has been heavily influenced by Western scholarship and has treated
culture as an important caveat, noting that many of the findings may not be valid or applicable to indi-
viduals and organizations from non-Western cultures. How can culture be an important contextual
factor yet function as a “caveat,” an outlier that creates noise in observed patterns? More importantly,
such an approach to culture in health communication also fails to account for the roles, functions, and
impacts of culture in the West. This is reflected in the lack of systematic discussion and conceptualiza-
tion about how culture, as a contextual factor, (a) serves as a resource and a product of individuals’ health
behaviors, (b) influences communities’ responses in offering support for some while silencing suffer-
ing for others, and (c) shapes institutional structures and policies that reinforce disparities or minimize
injustice. In other words, culture in the WEIRD-based literature (i.e., studies relying on participants
who are overwhelming Western, Educated, and from Industrialized, Rich, and Democratic countries;
Henrich et al., 2010) becomes invisible. If Western, modern, and/or industrialized societies are under
the influence of culture, how can we theorize culture to explain our understanding and behaviors of
health and illness—not just as a caveat or a contextual factor for non-Western people but for all people?

Conceptualizing Culture in Health Contexts

Scholars from different disciplines have different ways to think and talk about culture. Some see
culture as a relatively fixed or stable set of beliefs, values, and behavior patterns, often demarcated by
national or ethnic boundaries. Others see culture as a continual process of renewal and of integrat-
ing new information from external environments and indigenous experiences. In this chapter, I will
review four of the primary ways culture has been conceptualized: (a) culture as group, (b) culture as
speech community, (c) culture as worldview, and (d) culture as a living process. By conceptualizing
social interactions as intercultural encounters, I will explore the new frontiers expanded by diverse
and fluid approaches to conceptualizing culture in health communication and the transformed land-
scape of intercultural health communication.

Culture as Group
Conceptualizing culture as groups assumes that the group identified has unique characteristics com-
mon to all group members. The literature is dominated by studies that conceptualize intercultural

DOI: 10.4324/9781003043379-37 441

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communication through social interactions between racial and/or ethnic groups. Individuals’ gender
or minority/at-risk status (e.g., LGBTQ+ populations and the homeless) can also be conceptualized
as social groups, shaping individuals’ experiences of health and illness.

Demographic Concordance
Some studies have suggested that demographic concordance between physicians and patients has a
positive effect on provider-patient interactions and quality of care. For example, African American,
Asian American, and Hispanic patients rated their physicians, their medical care, and overall satis-
faction higher when they shared the same race with their physicians (LaVeist & Nuru-Jeter, 2002).
Compared to racially discordant patients, patients in racially concordant provider-patient interac-
tions were found to receive more information and to be more active in provider-patient communi-
cation (Gordon et al., 2006). Although only 10% of patients in a survey reported a preference for a
physician of their own race, in practice, minority patients appear to actively seek care from a racially
concordant physician: A quarter of Blacks and Hispanics and nearly one-half of Asians reported shar-
ing the same race/ethnicity with their physicians (Saha et al., 2003). Gender concordance between
patients and their providers also has a positive impact on cancer screening (Malhotra et al., 2017).
A review of the effect of gender concordance in medical encounters found that the effects were real
but typically “small in magnitude” (Street, 2002, p. 205).
Despite the positive effects of demographic concordance between patients and physicians,
researchers have also found that patient-centered communication style has a significant effect in
mitigating racial and cultural differences between providers and patients: “all immigrant racial/eth-
nic groups preferred providers who listened, spent enough time, and explained things well” (Chu
et al., 2019, p. 5). Saha et al. (2003) found that patient health literacy positively contributed to the
quality of provider-patient interaction, patient satisfaction, and use of health services; in contrast,
“patient-physician race concordance was not associated with better patient-physician interactions
or with greater physician cultural sensitivity” (p. 1716). However, a review of a large-scale national
survey between 2003 and 2010 identified a disconcerting finding: Hispanic patients seen by Hispanic
providers received breast and colorectal cancer screening at significantly lower rates than Hispanic
patients seen by non-Hispanic providers (Malhotra et al., 2017). Recognizing that influences of
gender are situated in sociocultural and interpersonal contexts, Street (2002) argued, “gender may
influence provider-patient interaction to the extent that it can be linked to the interactants’ goals,
skills, perceptions, emotions, and the way the participants adapt to their partner’s communication”
(p. 201). In short, the effect of demographic concordance can be mitigated by various factors,
including participants’ communicative skills and goals.

Providers as Cultural Beings

Historically, the medical literature presumes that clinicians are neutral professionals who are trained
to follow guidelines based on objective, evidence-based biomedicine and are unaffected by their
own personal variables and prejudice. The conceptualization of cross-cultural medical encounters
generally centers on patients as the cultural Other. However, one in four physicians in the United
States and Canada are international medical graduates (IMG; i.e., physicians who received their
medical school education outside of the United States or Canada; Ranasinghe, 2015). The lead-
ing source countries for IMGs include India, the Philippines, Pakistan, and Mexico. This does not
include U.S. citizens who received their medical education abroad. More than 20 million Americans
live in areas where at least half of the physicians are IMGs (American Immigration Council, 2018).
The literature suggests that a physician’s race and ethnicity can contribute to different clinical
practices and communicative behaviors. Physicians’ practices regarding end-of-life care mirror the

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preferences of the ethnic or racial group with which they identify (Mebane et al., 1999). Asian
American primary care residents are least likely to address cervical cancer, whereas African American
residents are most likely to do so (Arredondo et al., 2003). A national survey of primary care physi-
cians found that physicians’ race/ethnicity contributed to significant variation in treatment recom-
mendations for depression, anxiety, and medically unexplained symptoms (Lawrence et al., 2015).
Several studies also have identified gender as a factor impacting physicians’ communicative styles.
A study of Japanese primary care physicians found that female physicians substantially modified
their communication behaviors based on patient gender, whereas male physicians did not (Noro
et al., 2018). A meta-analysis found that compared to male physicians, female physicians adopt more
patient-centered communication, including more partnership behaviors, psychosocial counseling,
and emotion-focused talk (Roter et al., 2002). Another meta-analysis found that patients interact
with male and female physicians differently (Hall & Roter, 2002). Specifically, patients speak more to
female physicians (e.g., disclosing more biomedical and psychosocial information), are more assertive
with female physicians, and are more likely to interrupt them.

Culture as Speech Community

Gumperz (1968/2009) argued that a speech community is defined by “the speech varieties employed
within [the community] because they are related to a set of social norms” (p. 67). In other words,
conceptualizing culture as speech communities means that a cultural group can be classified accord-
ing to their communicative practices: “their usage, their origins, and the relationship between speech
and social action that they reflect” (Gumperz, 1968/2009, p. 67).

Language Barriers
When conceptualizing cultural differences as variations in speech communities, the literature has
traditionally relied on provider-patient language discordance (i.e., providers and patients do not
share the same language) to illustrate the challenges to cross-cultural care. Compared to the general
population, language-discordant patients are at risk of low health literacy. For example, a U.S. survey
found that whereas 44.9% patients with limited English proficiency reported low health literacy,
only 13.8% of English speakers did so (Sentell & Braun, 2012). Sentell and Braun (2012) found that
the impacts of language barriers supersede the impacts of low health literacy for poor health out-
comes. In an extensive review, Terui (2017) explained that language discordance can contribute to
patients’ experience of health disparities through direct and indirect pathways that impact their access
to care, process of provider-patient interactions, and outcomes of healthcare services. For example,
language discordance may motivate patients to delay help/care-seeking behaviors (Karliner et al.,
2012). Patients may also feel less satisfied with the quality of their care and interactions with provid-
ers (Harmsen et al., 2008). They are also more likely to experience problematic outcomes, such as
having unplanned emergency department (ED) visits within 72 hours after being discharged from
the ED (Ngai et al., 2016).
Many medical schools now require training in cultural competence to ensure that providers have
sufficient cultural and linguistic proficiency (Vela et al., 2015). With only ten weeks of medical
Spanish, providers were able to reduce their use of interpreters, but data indicated an increase in
patient satisfaction (Mazor et al., 2002). Such training, however, tends to adopt a biomedical per-
spective, emphasize physicians’ informational needs, and focus on information gathering for clini-
cal decision-making. When there is poor mutual understanding, language-discordant patients are
likely to be silenced by providers’ increased control over the content and process of communication
(Meeuwesen et al., 2007). Compared to providers in language-concordant interactions, providers
in language-discordant interactions are likely to spend more time directly advising the patients and

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less time engaging them in the decision-making process (Butow et al., 2011). As a result, although
providers may feel satisfied because their informational needs have been met, they may fail to address
their patients’ informational and emotional needs. Diamond and Jacobs (2010) concluded, “teach-
ing ‘Medical Spanish’ or related courses may actually contribute to healthcare disparities if clinicians
begin using these non-English language skills inappropriately with patients” (p. s189). Although
many studies have noted that language-concordant care results in higher ratings for patient satisfac-
tion, patient compliance, and perceived quality of care, such effects may be a function of rapport
rather than an indicator of quality care (Hsieh, 2016).
Interpreters have traditionally been viewed as the solution for language and cultural barriers in
healthcare settings. A comprehensive review by Diamond et al. (2019) found that when patients with
limited English proficiency were provided with interpreters, including professional and untrained
interpreters, they were likely to have better health outcomes in patient-reported measures (e.g.,
satisfaction and understanding of diagnosis) and objective health measures (e.g., glycemic control
and blood pressure). In the model of bilingual health communication, Hsieh (2016) proposed that
interpreter-mediated medical encounters are goal-oriented communicative activities, requiring pro-
viders, patients, and interpreters to actively negotiate their task, identity, and relational goals to
achieve quality and equality of care. To develop mutually agreeable and effective strategies to achieve
their collaborative goal of optimal care, providers, patients, and interpreters co-evolve with one
another: They learn to recognize each other’s strengths and weaknesses, negotiate their individual
perspectives, and adapt to others’ needs. For example, Guntzviller et al. (2017) found that when
bilingual children serve as interpreters for their Spanish-speaking parents, they adopt a team-effort
model, working together as a team to utilize both parties’ strengths, compensate for partner limita-
tions, and achieve mutually desirable outcomes. Bilingual children actively intervened in order to
enhance their parents’ self-efficacy, while their parents assisted in enhancing their children’s health
literacy. When their children believed that the parent-child dyads share the task and responsibility of
interpreting, Spanish-speaking mothers reported less frequent depressive symptoms even when they
were ambivalent about whether the interpreting activity was a shared task/responsibility (Kam et al.,
2017). In fact, Spanish-speaking mothers’ support for their children’s role as a family interpreter is a
protective factor against these low-income, bilingual adolescents’ depression (Guntzviller & Wang,
2019). The parents and children thrived together when they coordinated and collaborated with one
another to achieve mutually shared goals.
Finally, experiences of language barriers are situated in sociocultural contexts. Hsieh (2018)
argued that (a) language discordance is a social phenomenon that may entail diverging meanings
and experiences in different countries, (b) patients in language-discordant interactions may not share
similar experiences even if they are in the same country, and (c) disparities in language concordance
may be confounded with other disparities and cultural particulars that are unique to a host society.
For example, in the United States, discordant language healthcare generally means that the patient
has limited English proficiency (rather than the provider using a second language); in contrast, in
Japan, discordant language healthcare may mean that both patients and their physicians communicate
in their second language (e.g., English; Terui, 2017). In addition, depending on patients’ ethnicity
and/or country of origin, patients in language-discordant interactions may experience preferential
treatment (e.g., an English-speaking, white patient from France) or potential discrimination (e.g., a
Bantu-speaking, Black patient from Zimbabwe) in a host society even though both would be par-
ticipating in language-discordant communication.

Preferences for Information Management

A comprehensive review found that physicians from Anglo-Saxon cultures mostly believed that
patients should be informed about their advanced life-limiting illnesses; in contrast, most physicians

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from non-Anglo-Saxon countries were less likely to explicitly offer a poor prognosis (Hancock
et al., 2007). Parsons et al. (2007) identified significant cultural differences: Whereas 65% of U.S.
physicians reported that they always tell children about their cancer diagnoses, only 9.5% of Japanese
physicians reported the same. In fact, less than 1% of U.S. physicians reported rarely or never tell-
ing children about their cancer diagnoses; in contrast, 34.5% of Japanese physicians reported doing
so. When asked to find a way to balance the family’s desire to shield the patient from bad news and
telling the truth to the dying patient, an American physician responded, “When I was in medical
school, it was driven home to us that autonomy was the lynchpin concept. You’re destroying my
moral compass” (Solomon, 1997, p. 90). For the physician, information disclosure becomes not just
about patient autonomy but a claim of the physicians’ moral character.
In Spain, Italy, Greece, and many other collective cultures (e.g., Saudi Arabia, Egypt, Japan, and
China), physicians often disclose a poor prognosis to family members before informing the patient,
following the family’s requests for information management rather than disclosing bad news directly
to the patient (Mystakidou et al., 2004). Even when patients wish to know about their diagnosis,
cultural backgrounds may lead patients to prefer obtaining only basic (rather than extensive) infor-
mation, receiving euphemistic messages (to soften the blow), hearing the news from specific persons
(e.g., physician, nurse, or family members), and maintaining hope (Mystakidou et al., 2004). In
other words, the information management of illness disclosure is dependent on the cultural consid-
erations of appropriate place, time, process (e.g., who should disclose), and purpose (e.g., maintain-
ing hope or respecting patient autonomy).
It is important to note that these communicative patterns are culturally situated and are driven by
system norms, reflecting corresponding beliefs, ethics, and values. It is also important to remember
that parents and physicians in the United States do not always subscribe to such disclosure practices.
Prior to 1960, both parents and physicians in the United States believed that children should not be
informed about their cancer diagnoses (Chesler et al., 1986). The shift in U.S. physicians’ and par-
ents’ attitudes further highlights the socially constructed nature of provider-patient interactions. In
other words, what appears to be a universal value within Western biomedicine (e.g., patients’ right
to information) is, in fact, a recently emerged social construct of the U.S. culture.

Speech Community-Based Normative Beliefs

Language barriers and cultural differences are some of the most observable challenges in cross-cul-
tural care. However, health disparities due to differences in speech communities need not be about
people who speak different languages. For example, gender stereotypes and gender role expectations
about how men and women communicate differently can lead to disparities in the diagnosis and
treatment of illness that compromise women’s quality of care.
For example, even though women are more likely than men to die from a heart attack, physicians
are less likely to attribute symptoms to possible cardiac causes when female patients report stressful
life events than when male patients report stressful life events. In other words, when patients reported
stress, only female (but not male) patients’ cardiac symptoms were misinterpreted or discounted,
shifting from a diagnosis of coronary heart disease to a psychogenic disorder (Chiaramonte & Friend,
2006). As men’s report of pain is situated in their gender stereotype (e.g., “stoic men” and “brave
men”), men’s report of their pain is taken seriously and more likely to result in additional lab tests
(Samulowitz et al., 2018). When men appear frustrated or angry about their pain management, they
must be in serious pain; if they appear stoic, their complaint is equally real because that’s just the
way they talk (Dusenbery, 2018). In contrast, women’s reports of their pain are interpreted through
gender stereotypes and social norms (e.g., “emotional” or “hysterical” women who are crybabies).
As a result, if they appear emotional (e.g., crying or expressing anger/frustration), they are just being
feminine and are not perceived to be experiencing a high level of pain; but if they calmly discuss

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their pain in an objective manner, they must not be experiencing that much pain after all (Dusen-
bery, 2018; Samulowitz et al., 2018). The gender bias is so pervasive and normative that adults are
more likely to believe that a child suffered a higher level of pain when the child was described as a
boy instead of a girl—despite identical behaviors and circumstances (Earp et al., 2019).
Because women’s reports of their illness are more likely to be attributed to psychological prob-
lems and providers do not perceive their report of symptoms as reliable as men’s, women also face
disparities in diagnosis and treatment. For example, Lyratzopoulos et al. (2013) found that being a
woman significantly doubled the likelihood of requiring three or more pre-referral visits with their
primary physicians before being diagnosed with bladder cancer by a specialist. For renal cancer,
women’s odds of requiring three or more pre-referral visits is nearly double that of men’s as well.
Compared to men, women experience delayed diagnosis (i.e., longer duration from the first presen-
tation of symptoms to the official diagnosis) in a wide range of illnesses (Dusenbery, 2018).
Traditionally, research on cross-cultural care often centers on the experiences of health dispari-
ties as a result of the unique characteristics and conditions of specific groups. However, this line
of research demonstrates that addressing health disparities is not limited to fixing what is “wrong”
with the specific groups (e.g., low health literacy or limited English proficiency). Rather, society’s
normative beliefs can result in bias and discrimination that contribute to individuals’ unnecessary
and avoidable suffering.

Culture as Worldview
Worldviews are more than speech practices or social actions. Worldviews are the “fundamental cog-
nitive, affective, and evaluative presuppositions a group of people makes about the nature of things,
and which they use to order their lives”; in other words, worldviews are “what people in a com-
munity take as given realities, the maps they have of reality that they use for living” (Hiebert, 2008,
p. 15). Worldviews allow cultural participants to orient to their social worlds and to comprehend
events taking place in their realities (Note et al., 2008). That is, worldviews function as a compass,
creating boundaries of what is right, true, real, ethical, and moral. These guiding posts function as
beacons, allowing cultural participants to make sense of their experiences in their everyday life.

Medicine as Culture
Some researchers have argued that provider-patient communication should be considered intercul-
tural encounters because providers as medical experts and patients as laypersons do not share the
same worldviews (Ruben, 2016). In the theory of communicative action, Habermas (1981/1985)
proposed that individuals’ understandings of the world are not grounded in instrumental or objec-
tivistic terms but are structured through communicative acts. By highlighting the tension between
human communications in the lifeworld and the system, Habermas noted that the two communica-
tion modalities are motivated by different types of rationality. For Habermas, communication in the
lifeworld is communicative actions that are sensitive to contexts, orient to mutual understanding,
and result in coordinated actions through consensus. The system, in contrast, imposes a calculated,
impersonal, purposeful rationality that is devoid of sentimentality or morality. The world of the
system involves a purposeful, instrumental understanding of the social world.
Mishler (1984) drew on Habermas’s concepts and applied them to the field of medicine, pro-
posing the concepts of the voice of the lifeworld and the voice of medicine. The voice of the lifeworld
recognizes how a patient’s experiences of health and illness are always situated in their everyday life,
encompassing their unique perspectives and understandings (Lo & Bahar, 2013). Their lifeworld is
infused with their cultural beliefs, social experiences, and folk ideologies. In contrast, the voice of
medicine is oriented to and framed by the biomedical framework. The voice of medicine involves a

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technical understanding of health and illness that defines and controls the scope of a provider’s work.
Physicians actively frame and reframe a patient’s illness narratives and subjective experiences through
the voice of medicine.
Physicians’ training often socializes them to become the enforcer of the system, speaking as the
voice of medicine. For example, when medical students present their cases during the morning
reports, they are socialized to display a professional identity. When students deviate from the bio-
medical framework to include the voice of the lifeworld, faculty members often respond by reinforc-
ing the voice of medicine, telling students to “consider the diagnosis purely from technical evidence
rather than from information contributed by the patient” (Apker & Eggly, 2004, p. 422). Medi-
cal specialists in certain areas have basically no patient contacts (e.g., radiology and pathology) or
only brief patient contact (e.g., surgery, anesthesiology, and emergency medicine). In other words,
the patient’s lifeworld may have little impact on these medical specialists’ practice. Fadiman (1997)
observed an emergency care physician who worked on a patient with life-threatening conditions for
more than 12 hours straight without realizing that the patient was a girl. Fadiman concluded, “Here
was American medicine at its worst and its best: the patient was reduced from a girl to an analyz-
able collection of symptoms, and the physician, thereby able to husband his energies, succeeded in
keeping her alive” (p. 147).

Religion as Worldview
Although normally not thought of as intercultural health communication, religion and spirituality
can exert significant influences on individuals’ health beliefs and health behaviors, impacting the
process and quality of care (Pitaloka & Hsieh, 2015). Tensions and conflicts can arise when people’s
religious worldviews collide, resulting in diverging process and quality of care.
Conscientious refusal is defined by healthcare providers’ refusal to provide medical services or
goods, including medication and information, due to their religious, moral, philosophical, or ethical
beliefs. In end-of-life care, physicians who report being nonreligious “were more likely than others
to report having given continuous deep sedation until death, having taken decisions they expected
or partly intended to end life, and to have discussed these decisions with patients judged to have the
capacity to participate in discussions” (Seale, 2010, p. 677). In contrast, compared to physicians with
low religiosity, highly religious physicians are 4.2 times more likely to object to physician-assisted
suicide and 2.6 times more likely to object to terminal sedation (Curlin et al., 2008). Compared to
physicians of other religions, Catholic physicians are 2.8 times more likely to object to withdrawing
life support, which may reflect the Catholic doctrine of prohibiting actions intended to shorten life
(Curlin et al., 2008). Religious intensity is the strongest predictor for whether a physician believes
that they are never obligated to do what they personally believe to be wrong, with Catholic and
Orthodox physicians most likely to hold such beliefs (Lawrence & Curlin, 2009). The most religious
physicians were more likely than the least religious physicians to support refusing to accommodate
a patient’s request (Brauer et al., 2016). In fact, physicians’ religious intensity was a stronger predic-
tor for treatment recommendations for advanced cancer care than patient deposition (e.g., age and
preferences; Frush et al., 2018).
Religion as a worldview can prevail at the institutional and even national levels, impacting the
general public’s access to and process of care. Religious freedom is of such importance to the identity
and culture of the United States that it is incorporated into its constitution. The desire to protect
individuals’ religious freedom is so intense that 44 states and Washington D.C. also instituted religious
exemptions to the mandatory vaccination requirements for children despite the potential to jeopard-
ize the health of local communities (National Conference of State Legislatures, 2021; the excep-
tions are California, Connecticut, Maine, Mississippi, New York, and West Virginia). As religious
and philosophical (i.e., nonmedical) exemptions have drastically increased since the early 2000s,

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researchers have found an increase in outbreaks of preventable diseases in areas with high exemption
rates (Bradford & Mandich, 2015). More recently, employers have relied on religious exemptions to
deny employees certain health insurance coverage (e.g., birth control; Gasper, 2015). In July 2020,
the Trump administration proposed to allow homeless shelters to turn away transgender people from
single-sex facilities to better accommodate the “religious beliefs of shelter providers” (Cameron,
2020). A study found that whereas none of the 30 non-Catholic hospitals surveyed prohibited staff
from discussing emergency contraception with rape victims, 12 of the 28 Catholic hospitals in the
study had such a policy and seven of the Catholic hospitals also prohibited physicians from prescrib-
ing emergency contraception even if patients asked for it (Smugar & Spina, 2000). Patients may not
realize they received limited care due to the hospitals’ religious affiliation (Takahashi et al., 2019).

Hostile Lived Environments

Finally, individuals’ lived experiences may lead them to hold specific worldviews, shaping their
normative beliefs and health behaviors. Minority stress theory proposes that members of minority
groups experience health disparities because they are subject to perpetual and/or unique stressors
in everyday life as a result of stigma, prejudice, and discrimination in the larger society (Meyer,
2003). Miller et al. (2007) explained, “From early in childhood to late in adulthood, chronic stress is
accompanied by worse health, and the magnitude of this effect is substantial: In some cases, exposure
to chronic stress triples or quadruples the chances of an adverse medical outcome” (p. 25). Repeated
exposure to and witnessing of aggressive policing that results in fatal injuries of Black men and the
injustice of the legal system can trigger traumatic reactions for many Black people, with cumulative,
collective effects that can be passed across generations (Bryant-Davis et al., 2017). Such experiences
lead minorities to hold unique worldviews about their lived realities that contribute to their health
disparities.
Relatedly, medical mistrust (i.e., distrust of medical personnel and organizations) is a known con-
tributor to health disparities, resulting in reduced use of preventive care, poor treatment adherence,
and lower patient satisfaction (Williamson & Bigman, 2018). In a national survey, researchers found
that African Americans, Hispanics, and Asians are more likely than whites to perceive that (a) they
would receive better medical care if they belonged to a different race/ethnic group and (b) medical
staff judges them unfairly or treats them with disrespect based on race/ethnicity and how well they
speak English (Johnson et al., 2004). Minorities’ distrust of government and healthcare providers
not only reflects their marginalized status in society but also often reflects the chronic struggle and
tumultuous histories they share with the dominant groups (e.g., Tuskegee Syphilis Study during
1932–1972 and forced sterilization laws from the early 1900s to 1980s in the United States; Hsieh &
Kramer, 2021).
In contrast to whites’ expectations of the presumed trustworthiness of a governmental health
campaign or healthcare providers, minorities and immigrants have learned from past experiences that
health interventions and government-sanctioned medical projects may pose serious threats to their
interests and well-being. For the victims from these minority and/or marginalized populations, their
surviving relatives, and even the community at large, these events are not simply forgotten and for-
given when a president apologizes or court settlements are reached. Schembri and Ghaddar (2018)
explained,

Hispanic consumers are highly dependent on trust relationships with friends and family,
with a strong familial network interwoven throughout the community. Hispanic profes-
sionals within the Hispanic community are trusted professionals and especially so with
many local professionals being friends and family.
(p. 150)

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To a certain degree, the uneasy histories of minority groups’ experiences with healthcare authorities
and the government help explain their preferences for different sources of information for health
decision-making.

Culture as a Living Process

Increasingly, researchers have recognized that culture is neither a static nor a fixed “thing” attached to
a specific group of people. Rather, culture is a living process, entailing varied meanings and perspec-
tives that are situated in contexts and co-evolve with the larger communities. As such, cultures and
cultural perspectives are constantly being performed, negotiated, contested, and reconciled through
the dynamic interactions and pan-evolutions—changes in one aspect/element/member can lead to
changes in all others that are connected in the system.

Informed Consent
An example of culture as a living process is informed consent. Informed consent is an essential ele-
ment in Western medicine. By operationalizing informed consent as individuals’ exercise of patient
autonomy and self-determinism, Western medicine has embedded individualism in its vision of best
practices (Hsieh & Kramer, 2021). The practice of informed consent has become increasingly rigid
as it embodies the philosophy of medical ethics, practice guidelines of healthcare delivery, and legal
actions of malpractice claims (Maclean, 2009). Nevertheless, informed consent as a cultural practice
can be exploited, contested, and resisted.
For example, informed consent can be exploited in a way that reinforces medical paternalism and
creates a direct threat to patient autonomy. A provider may purposefully increase disclosure about
surgical risks to manipulate a patient’s decision-making (Hsieh et al., 2016). Similarly, the recent
rise in states’ regulations on provider disclosure for patients seeking abortions is couched under the
concept of informed consent. For example, South Dakota now requires physicians to state that abor-
tion will “terminate the life of a whole, separate, unique, living human being” (S.D. Codified Laws,
2019). Oklahoma law prohibits a medical provider from performing an abortion unless he or she first
performs an ultrasound, “display[ing] the ultrasound images so that the pregnant woman may view
them,” and provides a verbal description thereof (Okla. Stat. tit. 63, 2019). The Pennsylvania Abor-
tion Control Act (1982/1989) requires a physician to obtain informed consent at least 24 hours prior
to performing an abortion. In addition to informing the patient about “the nature of the procedure,
the health risks of the abortion and of childbirth, and the ‘probable gestational age of the unborn
child,’” the physician must also disclose

the availability of printed materials published by the State describing the fetus and provid-
ing information about medical assistance for childbirth, information about child support
from the father, and a list of agencies which provide adoption and other services as alterna-
tives to abortion.
(Planned Parenthood of Southeastern Pennsylvania v. Casey, 1992, p. 881)

Although these compelled disclosure statutes claim their legitimacy through the process of
informed consent, many researchers, providers, and legal professionals have raised concerns about
the coercive nature of the disclosure. In his concurring opinion, Supreme Court Justice Black-
mun analogized such requirements to compelling “a visual preview of an operation to remove an
appendix,” which he argued “plays no part in a physician’s securing informed consent to an appen-
dectomy” and “does not constructively inform” medical decision-making (Planned Parenthood of
Southeastern Pennsylvania v. Casey, 1992, p. 937).

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In response, providers may develop creative strategies to resist organizational policies regarding
information disclosure. As discussed earlier, due to the cultural preference for (or deference to) reli-
gious exemptions in the United States, some Catholic hospitals circumvent the practice of informed
consent by explicitly prohibiting physicians from discussing or prescribing emergency contraception
for rape victims (Smugar & Spina, 2000). However, in these hospitals, physicians “tell victims that
they have a policy prohibiting discussion of emergency contraception,” refer the victims to another
provider where the information would be provided, invite rape counselors to the emergency depart-
ment to provide such information, or just discuss the information despite hospital policy (Smugar &
Spina, 2000, p. 1373). From this perspective, healthcare providers actively interpret and reconcile the
tensions between different cultural perspectives (i.e., their professional responsibility as a healthcare
provider, their personal beliefs regarding patient autonomy, and the institutional policy of prohibit-
ing certain disclosure) through strategic actions.

Cultural Fusion and Dialogic Space

Kramer’s (2013) theory of dimensional accrual and dissociation argues that as individuals encoun-
ter different cultures, they accumulate diverse repertoires, allowing them to create innovative
blends of cultural perspectives—an integral fusion worldview. Hsieh and Kramer (2021) argued
that an integral fusion approach is a commitment to maintaining a dialogic space that protects,
promotes, negotiates, and reconciles different ideas and perspectives. A dialogic space is where
people with different perspectives and interests engage with one another—with the goal to under-
stand the Other and a willingness to change. Essential to the process is the openness to hear, and be
influenced by, the Other—to risk one’s hermeneutic horizon so that we may evolve together—
emotionally, rhetorically, and cognitively (Kramer, 2000). Using the LGBTQ+ movement as an
example, Hsieh and Kramer explored how LGBTQ+ groups do not passively accept stigmatiz-
ing labels but actively redefine in-group and out-group boundaries that challenge the existing
framework imposed by the larger society. Rather than focusing on their stigmatized status, the
LGBTQ+ community focused on efforts to facilitate the pan-evolution of the larger society. By
embracing opportunities for cultural fusion and securing allies, LGBTQ+ groups secured equal
rights for themselves (Obergefell v. Hodges, 2015), lent voices to others (e.g., Black Lives Matter),
and transformed the larger community to support and even celebrate their uniqueness (e.g., Pride
Month and Pride Parades).
From this perspective, an integral fusion approach is consistent with the concept of justice as
fairness proposed by Rawls (2001). Reflecting on the process through which a society with differ-
ent cultural groups and values can create and maintain sustainable justice from one generation to
the next, Rawls argued that when community members can believe that institutional structures and
social practices are just and fair because the agreed-upon principles are established with their voices
incorporated, they would be ready and willing to do their part to follow those arrangements if they
can reasonably expect others to do the same.
Similarly, Dutta (2008) proposed the culture-centered approach (CCA) to address health dispari-
ties in marginalized populations. Members of these marginalized groups are more likely to belong to
different speech communities and experience hostile lived environments than are members of domi-
nant groups. CCA is a commitment to listen to and include marginalized populations’ voices while
critically and reflexively interrogating one’s biases and presumptions. CCA has been widely applied
in community-based interventions (see Sastry et al., 2019). CCA invites members of marginalized
communities, practitioners, and the larger society to engage in dialogues that challenge existing
social structure and address historically situated social injustice. Dialogic spaces are necessary for all
members to collaborate and co-create structures and knowledge of their shared communities. In
other words, CCA “seeks to build dialogic spaces in subaltern communities to interrogate, theorize,

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and formulate participatory communication in locally meaningful and contextually-situated ways,

putting forth subaltern theories of health and wellbeing” (Dutta, 2018, p. 240). Because structural
stigma and structural discrimination are foundational to marginalized populations’ experiences of
injustice and disparities, meaningful and effective solutions can only emerge when marginalized
populations’ voices are not only heard but also integrated into the structures and cultural orientations
of the larger society.

Future Research Directions

We can only recognize our own cultural perspectives and limitations when we encounter differences.
When we recognize the diverse and fluid approaches to conceptualizing culture in health communi-
cation, we can develop a deeper understanding of not only the Other but also ourselves. The field of
intercultural health communication is transforming and expanding in the following ways.
First, we need to look beyond a group-based approach to conceptualize cultures. Researchers
have cautioned that the different approaches to conceptualize culture and categorize groups can
create blind spots in our ability to identify problems and develop solutions (Epstein, 2007). When
interventions are designed for specific population-based labels, we may overlook populations that are
not named. For example, by focusing on racial/ethnic Other, we can inadvertently fuel racism while
silencing the suffering of the poor white Americans (Kawachi et al., 2005). Similarly, by highlight-
ing specific characteristics, traits, or behaviors as risk factors, we may inadvertently pathologize these
variables and overlook the underlying sociocultural issues that interact with and even fuel the dis-
parities. For example, by viewing gender as a risk factor without recognizing our normative beliefs
and cultural bias about gender differences in speech, we will continue to fuel women’s experiences
of health disparities in pain management, diagnosis, and treatment.
Second, we need to recognize that culture is not just about differences in patterned behav-
iors. Rather, health behaviors and normative beliefs are situated in value systems imposing moral
structures on its cultural participants. The actions of Catholic physicians whose religious intensity
overshadows their patients’ treatment preferences or the Catholic hospitals that prohibit physicians
from discussing or prescribing emergency contraception even if patients ask for it cannot be truly
understood unless we can recognize (a) the importance of religious beliefs in shaping their moral
compass for healthcare services and (b) the prominent role of religious freedom in shaping the U.S.
healthcare and legal systems. Rather than attributing low health literacy to marginalized populations’
distrust of government and health authorities, we need to appreciate the role of historical and gen-
erational trauma of injustice in shaping their health behaviors. What appears as risky or uneducated
(e.g., smoking and drug use) can be valuable resources to perform identities and relationships for the
marginalized as they build resilience and survive in a hostile lived environment (Factor et al., 2011).
We must not only understand but also appreciate how such health behaviors and normative beliefs
are meaningful and valuable to the cultural Other. As we engage in dialogues with the Other, the
goal is not to force conformity or assimilation. Dialogic spaces represent a commitment to collabo-
rate and co-evolve with the Other—a willingness to change and to develop a fair and just system
based on reasonable consensus of all parties involved.
Finally, intercultural health communication should not be limited to identifying, understanding,
and addressing differences and disparities of the cultural Other. Rather, as we learn more about the
Other and ourselves, we should aim to build infrastructures and social policies that are capable of
ensuring sustainable justice. We need to be vigilant against exploitations and manipulations of our
cultural practices that no longer serve the underlying cultural values we embrace. Recognizing how
the cultural values of some may impose unfair burdens on others, we have moral obligations to seek
solutions and reconciliations so that all people in our communities are free and equal. Equity and
justice are public health issues. Without addressing structural injustice in our systems and institutions,

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we will continue to view the cultural Other as deviants and ills of our society—when the truth is
that the suffering and disparities of vulnerable populations are the symptoms of an ill society that has
failed to maintain a just and fair system for all.

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 31
GLOBAL HEALTH
COMMUNICATION
J. Douglas Storey

The term “global health communication” refers to a huge domain of research and practice. If we
break this down, the World Health Organization defines health from a wholeness perspective as
“a state of complete mental, physical, and social well-being and not merely the absence of disease
or infirmity” (Callahan, 1973, p. 77), indicating a universe of opportunities and responsibilities for
researchers and practitioners. Global health adds additional complexity. It is characterized by such
diverse elements as (a) decision-making based on data and evidence (vital statistics, surveillance and
outbreak investigations, laboratory science), (b) a focus on populations rather than individuals, (c) a
goal of social justice and equity, and (d) an emphasis on prevention rather than curative care. It does
not focus only on health issues that affect low- and middle-income countries (LMICs), nor does it
focus on infectious diseases that literally cross national borders; instead, it refers to “any health issue
that concerns many countries or is affected by transnational determinants” (Koplan et al., 2009,
p. 1993).
As readers of this volume know, communication is also an expansive, multilevel, multidisciplinary
field. It is humbling to think of merging two such complex disciplines as communication and global
health. Communication scholars and practitioners who choose to work in global health must not
only address the broad range of health issues and approaches across levels of the social ecological
continuum (described elsewhere in this volume). They must also take into account and adapt to
the almost limitless variations in context and lived experience of people and communities around
the world that affect local health and communication about it, including the values and capacities
within many communities that can enhance health and enable social change (Airhihenbuwa et al.,
2009; Sen, 1999), as well as structural inequities, globalization, climate change, institutional racism,
and other social determinants that we now recognize have pernicious impact on health outcomes.
If nothing else, for more than 50 years the field of global health communication has been an arena
for intense multilevel dialogue about the means and ends of research and praxis; that dialogue has
profoundly affected the whole discipline of communication.
It is beyond the scope of this chapter to address all of these challenges, so it will focus on some
higher order themes that inform research and practice and may suggest productive directions for the
future of this field, namely, (a) priorities and gaps in global health communication, (b) opportunities
for cross-national theorizing and comparative study, including the role of donor agencies, and (c)
the quest for impact at scale. In addition, two brief case studies are presented to illustrate aspects of
these themes.

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 Global Health Communication

Priorities and Gaps

Although there is a wealth of evidence about what health communication can achieve in both the
Global North and Global South (Global Alliance for Social and Behavior Change, 2021), that evi-
dence is scattered across many scholarly journals representing communication and non-communi-
cation specialties. Also, much valuable evidence from LMICs exists in the gray literature that is not
widely accessible within international scholarly and professional networks, especially in the Global
South. The literature that does flow from North to South, when access is not constrained by sub-
scription fees or limited technology, is, often with good reason, criticized for being too WEIRD,
that is, from Western, educated, industrialized, rich, and democratic countries (Henrich et al.,
2010), and therefore, too culturally, politically, or ethically suspect, insensitive, or inappropriate. To
be sure, some—although certainly not all—of the health communication in the South is becoming
more participatory and culture-centered (Airhihenbuwa & Dutta, 2012), but limited opportunities
for South-South and South-North exchange constrain dialogue and the growth of a truly global
health communication field (Storey & Sood, 2013).

Scanning the Literature

Although systematic reviews of aspects of global health communication have been conducted in the
past decade, none have attempted to survey the field at large. Systematic and comprehensive reviews
in recent years have focused on specific theoretical approaches such as the culture-centered approach
(Sastry et al., 2019), the health belief model (Green et al., 2020), and health literacy (Altin et al.,
2014; Sheridan et al., 2011; Sørensen et al., 2012). Other reviews have focused on specific health
topics such as female genital mutilation (Berg & Denison, 2013), violence against children (Edberg
et al., 2015; Sood, Kostizak, et al., 2021), nutrition and children’s media exposure (Borzekowski &
Pires, 2018), uptake of routine immunization (Cairns et al., 2012; Thomas et al., 2010), and men-
strual hygiene management (Sumpter & Torondel, 2013; van Eijk et al., 2016).
Still other reviews have focused on the use of specific technologies or channels, such as artificial
intelligence (Ismail & Kumar, 2021), use of short message services for disease control in developing
countries (Déglise et al., 2012), community media and participatory storytelling (Granger et al.,
2018), mass media for child survival (Naugle & Hornik, 2014), use of social media in health and
medicine (Giustini et al., 2018, itself a systematic review of 38 systematic reviews) or in response to
Ebola outbreaks (Fung et al., 2016), and mHealth interventions in general (Braun et al., 2013; Gur-
man et al., 2012), as well as more specifically for chronic disease prevention (Beratarrechea et al.,
2014; Nimkar & Gilles, 2018), for adult physical activity (Davis et al., 2020), and for maternal and
neonatal care (Sondaal et al., 2016). Yet others have focused on intervention approaches such as
entertainment-education (Riley, Sood, & Robichaud, 2017; Riley, Sood, Mazumdar et al., 2017;
Shen & Han, 2014; Sood et al., 2017), global health education in the Americas (Mendes et al.,
2020), risk communication for COVID-19 (Porat et al., 2020), microcredit strategies for women’s
empowerment (Vaessen et al., 2014), and use of narrative evidence about COVID-19 in social media
(Gesser-Edelberg, 2021).
Research on health communication around the world is found in the literature of non-commu-
nication disciplines as well. For example, since 2019, an ongoing initiative of the Global Alliance
for Social and Behavior Change, mentioned earlier, has been to build a searchable database of com-
munication intervention evaluation studies compiling evidence of impact across the United Nations
Sustainable Development Goals (SDGs; The United Nations, 2021). As of this writing, reviews of
intervention studies from SDG 5 (Gender Equality), SDG 13 (Climate Action), and SDG 16 (Peace,
Justice and Strong Institutions) have been completed. Of the 203 studies reviewed in these three

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domains, 15% of the interventions addressed some aspect of health in relation to the environment,
gender, or peace and justice.
Going back a little further, a global social and behavior change communication (SBCC) land-
scaping effort was commissioned in 2011 by the Bill & Melinda Gates Foundation (Storey et al.,
2011). It reviewed 625 unique peer-reviewed program evaluations, intervention research studies,
and randomized control trials of social and behavior change interventions conducted in high-, mid-
dle-, and low-income countries between the years 2000–2010 across the reproductive, maternal,
neonatal and child health, and nutrition domains. Communication intervention approaches repre-
senting the related fields of health communication, health education, and health promotion included
many forms of face-to-face and interpersonal communication strategies, group-based approaches,
community-based engagement approaches, and media and social marketing approaches, including
advocacy, social media, online, and mHealth interventions.
During that decade, the most-studied health communication intervention topics were repro-
ductive health and HIV/AIDS, followed in order by (1) nutrition (much more in higher than in
lower income countries), (2) neonatal health, (3) maternal health, and (4) child health. Much of the
communication work on neonatal health was related to the initiation and duration of breastfeed-
ing. Child health beyond the first year of life was a relatively neglected area of research in lower and
higher income countries alike. There were few interventions addressing noncommunicable diseases.
Although many interventions employed multiple communication strategies, the most-studied
intervention approach by far was interpersonal communication, notably counseling, especially
in higher income countries. There was relatively more research on the use of community-based
approaches in LMICs than in higher income countries. Key attributes of successful community-based
approaches emphasized the engagement of community members and mobilization of resources. Very
few community-based intervention studies measured population-level impact on health behavior
outcomes, focusing instead on improvements in localized social determinants (e.g., access to quality
services) and social processes (e.g., inclusive program planning or equitable service delivery) that are
thought to improve the sustainability of health outcomes. Interpersonal communication approaches
received by far the most research attention, with such studies claiming the ability to personalize
information and tailor it to the needs of patients/clients. Successful providers had at least some
training in counseling techniques and behavioral science, a commitment to client-focused practice,
empathy, and access to quality job aids, including print materials, electronic assessment tools, and
science-based processes like motivational interviewing. Group-based approaches tended to empha-
size social structural factors, the role of norms and normative perceptions, and the extent to which
social resources (social capital) were available and equitably distributed. Social network approaches
worked best when desired behaviors were reinforced by social pressures, whereas social capital inter-
ventions worked best when structural changes in the social environment (e.g., access, equity), rather
than change in behavior alone, were attempted. Mass media and social marketing approaches used
a broad range of media technologies from large (e.g., national television) to small (e.g., community
radio) and from one-to-one technologies (e.g., texting) to one-to-many technologies (e.g., televi-
sion, Facebook). Media were often used in an integrated way with multiple channels designed to
have complementary and reinforcing effects. One of the main strengths of these approaches was their
ability to reach large numbers of people quickly with consistent high-quality information, although
this often came at the expense of personalization of messages.
At the time of the Gates study, behavioral economics (BE) was a relatively new intervention
approach, and few communication-related studies were identified. Those studies focused mainly
on the messaging implications of how behavioral decisions were influenced by anticipated gain or
loss, which could be literally financial, as in receiving a subsidy or voucher for service utilization, or
subjective, as in a gain or loss of status or self-esteem. Since then, the literature has grown dramati-
cally, and several meta-analyses of BE and health communication are available, including studies on

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nutrition education (Guthrie, 2017), family planning and reproductive health (Hutchinson et al.,
2018), noncommunicable disease and lifestyle risk (Blaga et al., 2018), COVID-19 (Soofi et al.,
2020), and the use of nudges and prompts in lifestyle interventions (Ledderer et al., 2020). Although
BE may be seen by some as a new form of manipulative persuasion, it may also be seen as a way to
understand and respect the unique, nonrational forces and endogenous preferences that affect per-
sonal choice in a particular setting (Rice, 2013). In some applications, this might be empowering
and even lead to greater personal agency (Akbas et al., 2016).
More recently, a WHO review of global social, behavioral, and community engagement
(SBCE) efforts, also in the broad domain of maternal, child, and newborn health, used the Child
Health and Nutrition Research Initiative (CHNRI) method to prioritize SBCE research topics
(Chan et al., 2020). The authors recruited 310 researchers, health professionals, and policy makers
around the world to identify gaps in the literature and prioritize particular areas for future scholar-
ship. Identified priorities included research to strengthen the agency of families and communities
to practice self-care, family care, and service utilization behavior. Pathways to these goals included
more integration of SBCE into facility-based and community-based health services, more focus
on breastfeeding and child nutrition, and strengthened commitment by national-level stakeholders
to these goals.
Finally, as recent experience with the COVID-19 pandemic has made clear, national lockdowns
and social isolation have drawn worldwide attention to the importance and reliability of the infor-
mation resources people have available to them and how that affects their health and coping with
a health crisis (Ihm & Lee, 2021). Although access to digital and online technologies is far from
equitable (Watts, 2020), many communities and individuals, even in remote and marginalized areas,
do have at least periodic access to mobile phone technology and, through that, to the Internet (Islam
et al., 2019).

Cross-National Theorizing and Comparative Study

An important takeaway from this scan of research is that although research and practice span many
aspects and contexts of global health communication, there is a continuing need for comparative
research and theoretical synthesis. Global health communication, almost by definition, requires us to
think across contexts, cultures, and peoples; to identify lessons learned from those comparisons; and
to bring those lessons into new settings for replication and testing. This does not mean overlook-
ing or downplaying the unique characteristics of local communities or cultures. Rather, it means
respecting those differences while seeking to understand what they may have in common.
Scholars and practitioners around the world typically work within the academic traditions in
which they are trained; many are unaware of or unfamiliar with perspectives from other scholarly
traditions or perspectives that grew out of research in very different sociocultural settings. Global
health communication as a field may help encourage the multilevel, multicultural dialogue that can
overcome these gaps. The question is how “portable” theories and approaches are—not strictly
generalizable, but adaptable—beyond the context in which they originated. Culture, including the
culture of research, is not static; in cognitive anthropology culture is a dynamic, socially constructed
version of the world as experienced and expressed by members of a group (Goodenough, 1981).
From a critical perspective, it may seem impossible to reach cultural convergence through debate
in the margins of elite, scholarly exchange. But Barbero (2009), writing about the globalization of
digital experience, asserts that convergence can emerge through genuine connectivity and cultural
interaction. If we acknowledge the limitations and biases of scholarly networks, work in the global
health communication space may nevertheless help to foster connectivity as scholars and practition-
ers step out of their own worlds, immerse themselves in local cultures, reflect on their own para-
digms, and act as bridges or weak ties (Granovetter, 1973) between various types of communities.

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The Role of Donors

In the 1940s, the instrumental use of communication to achieve national/global, social, and political
objectives first emerged as a field of academic research and program practice. Communication for
health was an early focus of development communication; it is hard to separate the two historically.
UNESCO was an early institutional player with a series of investments in pilot studies of rural radio
for mass publics in the 1950s–1960s in India, Pakistan, and Burma that directed attention to the role
of communication in marginalized communities (Mathur & Neurath, 1959; Schramm, 1964).
Besides UNESCO, one of the first funders of health communication on a large scale was the
United States Agency for International Development (USAID), which supported a series of media-
based educational studies in American Samoa, El Salvador, and Mexico in the 1960s–1970s (Mayo
et al., 1974; Ray et al., 1978). But by the mid-1970s, partly in response to neo-Marxist arguments
from Latin American scholars like Paolo Freire, Juan Diaz Bordenave, and Luis Ramiro Beltrán
and groups like the UNESCO-supported CIESPAL (International Center of Higher Studies in
Communication for Latin America) in Ecuador, the focus was shifting to approaches that were
needs-oriented, endogenous in origin, self-reliant, ecologically sound, and structurally transforma-
tive (McAnany, 2012).
While this debate catalyzed and intensified programmatic emphasis on grassroots communica-
tion, international donor agencies like USAID were beginning to fund centrally planned exper-
iments specifically in the use of communication for health, such as the Mass Media & Health
Practices project (1978–1983) in Honduras, Peru, Ecuador, The Gambia, and Swaziland (Foote
et al., 1985; Green, 1985; Miller, 1987). This project overlapped with the Population Informa-
tion Program (1972–1992), which aimed to make information about population and reproductive
health widely accessible to communities of practice globally. They were followed in succession by
the Population Communication Services project (1990–2002), the Health Communication Partner-
ship project (2002–2007), the C-Change Project (2007–2012), the Health Communication Capac-
ity Collaborative (2012–2017), and Breakthrough ACTION (2017–2022). All of these long-term
investments were aimed at providing technical assistance to host country agencies and organizations
in the design, implementation, and evaluation of health communication and other development
initiatives, including some gender, environmental, and democracy and governance efforts. The mul-
tiyear timeframe of these projects and the number of countries they covered allowed unusual levels
of continuity of effort and sharing of research tools, engagement strategies, local capacity building,
and lessons learned across national borders. Other projects during this same era experimented with
communication strategies to address other social issues (e.g., AIDSCOM, 1987–1993 for AIDS pre-
vention and GreenCom I & II, 1993–2006, for environmental resource management).
Although these global efforts often included participatory, grassroots, and community-initiated
elements in the strategies they developed and tested, the primary emphasis typically was on mass
communication (to a somewhat greater extent than interpersonal or community-based communica-
tion) and on changing health-related and other behaviors that offered individual/household benefits,
rather than on changing fundamental social, economic, and political determinants and disparities
that weakened health and constrained development progress in the first place.
Critiques of this tendency were highlighted in two important global conferences: the Bellagio
Conference on Communication and Social Change (1997) sponsored by the Rockefeller Founda-
tion and the World Congress on Communication for Development (2006) sponsored by the World
Bank and the UN Food and Agriculture Organization. Both conferences—a decade apart—stressed
a focus on social rather than (merely) behavior change. The Bellagio Declaration of Principles took a
particularly strong stance against behavior change communication (BCC) as too narrow and inher-
ently manipulative, preferring to label the field as “Communication for Social Change.” The Rome
Consensus, signed at the end of the World Congress a decade later, described many of the same

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principles as the Bellagio Declaration but returned to use of the “Communication for Development”
label.
A new source of confusion and tension in the world of communication and development came
with the authorization in 2003 of the President’s Emergency Plan for AIDS Relief (PEPFAR) in the
United States. Since then, more than USD 85 billion has been allocated for HIV/AIDS prevention,
treatment, and care (PEPFAR, 2021), much of it redirected from population and maternal and child
health budgets. Management of programs under this mandate fell increasingly to the United States
Centers for Disease Control and Prevention, which prioritized biomedical solutions to the HIV/
AIDS threat, thus de-emphasizing and reducing funding for behavioral solutions, including com-
munication, on the grounds of “soft” evidence of communication effectiveness to reduce disease
burden.

Mainstreaming Global Theories

The conceptual frameworks underlying most of these efforts included some degree of participation
and community-based approaches, but the large scale, population-based projects were still largely
shaped by Western psychosocial theories of behavior change communication. Absent from these
theories were many constructs that are fundamental to the philosophy and practice of communica-
tion in other cultural traditions.
For example, Kincaid (2013), in his edited volume, Communication Theory: Eastern and Western
Perspectives, described how Buddhist, Confucian, Taoist, and Hindu philosophy dating back as early
as 551 BCE reflects beliefs about the nature of human communication. Asian theories are diverse
yet share a basic belief in the interconnectedness of social relations across space and time and the
constructs of compassion, emotion, collective response, and spiritual calmness as they relate to com-
munication processes. Some of these constructs have already proven useful in empirical research. For
example, Kapadia-Kundu (1994) tested the Hindu concepts of compassion and collective response
from the Hindu tenets of Sadharanikaran in a study of communication about defecation hygiene
behavior in Maharashtra, India. More recently, she used the constructs of compassion, emotional
well-being, and community response in a cluster randomized control trial of a school-based men-
strual hygiene and nutrition intervention for adolescent girls in Uttar Pradesh, India (Kapadia-
Kundu et al., 2014).
African communication traditions, too, reflect a diverse and complex mix of cultural values and
practices spread across the vast continent. The literature remains limited (Okigbo, 1987), but impor-
tant key constructs appear repeatedly in studies, including cultural identity, norms, social systems,
and oral media (e.g., storytelling, dance, town criers). Recent models building on these traditions
challenge “deficit” and “needs” perspectives and instead promote the “value” approach where com-
munity strengths are identified and acknowledged, particularly with respect to social relationships
and expectations, cultural empowerment, and cultural identity (Airhihenbuwa & Dutta, 2012).
Latin American perspectives provide their own insights into the role of communication in social
change and a tradition of critical appraisal. These perspectives introduced the concept of “praxis” or
“action,” which is essential for transformational goals, and championed a focus on participation and
the essential nature of communication as dialogue (Beltrán, 1980; Díaz Bordenave, 1998). And, of
course, the Freirean concept of “conscienticization” (critical awareness) has become a touchstone
of communication scholarship leading to an emphasis on self-determination, local ownership, and
empowerment as central to praxis in communication, with participants and media actively engaged
in the processes of change, resistance, and transformation (Freire, 1970).
Finally, although Euro-American communication theories are overrepresented in the global lit-
erature and are often criticized for being overly focused on individualistic, rationalistic, and apolitical
conceptions of communication and society, the origins of “Western” theories are also extremely

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diverse and rich: classical Greek philosophy, rhetoric and persuasion theory, cybernetics, social con-
structivist theories of communication and empathy, literary theory, the complex systems perspective
of diffusion, French social structural theory, and the Frankfurt and Birmingham Schools on cultural
industries and power. Beginning in the 1970s, the critical theories from Latin America began to
infiltrate Western communication in the form of constructs related to power, equity, transparency,
legitimacy, and communicative action. Like all others, Western theory has evolved in a synthetic
and cumulative way, rather than as a succession of paradigm victories, one over another (Neuman &
Guggenheim, 2011).
The point to emphasize here is that involvement by global donors in international health com-
munication, as described in the preceding section, encouraged these conceptual debates, enabling
global perspectives to emerge as national governments, civil society organizations, international
nongovernmental organizations (NGOs), local communities, and scholars and researchers engaged
in social change projects, many of them health-related (Fox, 2012). Through this process, theories
bumped up against theories; motives were questioned and debated; and approaches were tested,
refined, adapted, and sometimes abandoned. It is hard to imagine the emergence and evolution of
global health communication without noting the role that donor agencies have played in encourag-
ing synthetic—even critical—thinking and the portability of theories and approaches.

Comparative Study and Exchange

International and regional conferences are another way that theoretical synthesis and global dia-
logue occur. For example, over a period of 22 years from 1989 to 2012, a series of five international
entertainment-education (EE) conferences was held in the United States (Los Angeles, CA, and Athens,
OH), the Netherlands, South Africa, and India, with funding support from USAID, the Bill & Melinda
Gates Foundation, UNICEF, and other international and country-level partners. A sixth EE conference
was merged with the 2018 International Social and Behavior Change Summit in Indonesia (Center for
Communication Programs, 2018). Entertainment-education itself is a broadly synthetic domain of com-
munication research and praxis that—some are disappointed to note and others to celebrate—has had a
significant historical focus on Western perspectives on health. For example, the first EE conference in
1989 was heavily focused on population and reproductive health issues. More broadly, an analysis of those
five conferences (Storey & Sood, 2013) showed that whereas 65%–75% of the programs and studies pre-
sented at the first three conferences were from the Global South, that percentage increased over the next
decade to 95% in 2011. Similarly, the range of theoretical perspectives diversified from a predominant
focus on Western-oriented psychosocial theories to include theories of narrative and discourse, empathy
and emotional response theory, culture-centered theory, cultural discourse theory, performance theory,
empowerment approaches based on Freirean dialogic principles, discussions on the role of subversion and
shock humor, semiotic analysis, and transmedia theory.
Besides the periodic EE conferences, other international conferences such as the International
Communication Association (ICA; which has a large and growing health communication division)
and the International Association for Media and Communication Research (IAMCR; which has a
health communication working group) move their venues around the world on an annual basis, pro-
viding a basis for global exchange of research scholarship and practice experience and opportunities
for synthesis, comparative analysis, and paradigm dialogue that may foster the emergence of global
theories of health communication (Storey & Figueroa, 2012).

The Quest for Impact at Scale

No discussion of donor involvement, theory development, or comparative study would be com-
plete without some attention to the issues of scale and sustainability. This section of the chapter will

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consider two dimensions of this: the use of integrated communication strategies to improve the
efficiency and impact of programs, and efforts to increase capacity, sustainability, and accountability.

Integrated Programs
Integrated programming is recommended under the Sustainable Development Goals (WHO, 2008).
It refers to efforts to address more than one health issue within a single program, usually by devel-
oping a unified strategy that considers how multiple topics or behaviors relate to each other. The
strategy may be linked in practice through phased implementation (addressing each topic in turn
over time), use of shared branding, coordination at a common service delivery point, or use of a
common service approach such as counseling that addresses multiple health issues in a single session
(Center for Communication Programs, 2017). Studies of integrated programming have found it
effective in combinations of HIV prevention, testing, counseling, and outreach and legal support for
men who have sex with men (Firestone et al., 2014); maternal and child health and family planning
(Hess et al., 2012); child health, nutrition, and cognitive development (Yousafzai et al., 2014); and
possibly for health, nutrition, and agriculture, although better metrics are needed to assess the impact
of integration, per se, in this domain (Masters et al., 2014).
An example of integration is the provision of both HIV and tuberculosis (TB) services at a single
facility, so that clients can obtain information, counseling, and treatment for both conditions during
a single clinic visit. Integrated services may also require integrated, coordinated communication with
the public about how the combined service areas, benefits, and behaviors are related. Promotion of
integrated services in the media, interpersonal communication, and counseling may be part of the
strategy, as well as other forms of communication for service management, service provider training,
policy support and regulation, and in some cases advocacy for adoption of the integrated approach
itself among hesitant program managers and health professionals (WHO, 2008). Other integrative
communication strategies include the health competence approach (Pollock & Storey, 2012; Sto-
rey & Figueroa, 2012; Storey et al., 2008), which focuses on strengthening underlying competen-
cies such as health literacy or information seeking that facilitate multiple health behaviors, and the
gateway behaviors approach, which focuses on the promotion of early-stage behaviors that—once
established—facilitate multiple subsequent behaviors. For example, encouraging spousal communica-
tion about family health and timely utilization of prenatal care have been shown to facilitate an array
of later postnatal, neonatal, child nutrition, and immunization behaviors (Schwandt et al., 2015).
Integrated programs add value because they can extend reach through the coordinated use of
multiple channels that serve different audience segments. They can also reinforce message effects for
people who engage with multiple channels and receive similar information from multiple sources.
Integrated messaging can also capitalize on similarities between behaviors, such as adherence to both
antiretroviral therapy for HIV and multidrug treatment for TB. Patients who master one set of skills
may find it easier to enact other similar behaviors if those are strategically linked in health messaging.
Another aspect of integration related to scale is methodological. Research, monitoring, and eval-
uation of integrated programs often require multiple data collection techniques and data sources not
only to understand the processes and effects for each health objective but also to measure the value-
added effects of integration itself (FHI 360, 2016; Masters et al., 2014). For example, besides meas-
uring individual-level psychosocial variables such as attitudes, self-efficacy, perceived norms, and
exposure to messages about behavior change, evaluators must also develop and measure indicators
specific to integration itself: coordination processes, types and extent of integration, harmonization
and branding of messages and services, task shifting and resource sharing among the related services,
and cost-effectiveness, to name just a few. Data sources may include a combination of household
surveys, facility-based observations and interviews, analysis of service statistics, policy and process
monitoring, and various complexity-aware methods (Britt & Patsalides, 2013) such as “outcome

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harvesting” (Gurman et al., 2018), which involves qualitative, retrospective, participatory program
review with stakeholders. Complexity-aware methods are often more suitable than randomized trials
or post-intervention surveys for monitoring and evaluating long-running programs with multiple
components and extended causal chains of effects. Triangulation across multiple data sources is often
needed to tell a complete story about what worked and why.
The global health communication perspective adds to the complexity of these challenges, of
course, because integrated approaches must be tailored to the unique circumstances of each health
system and how it is designed to meet local stakeholder and community needs. Nowhere is cultural
tailoring (Kreuter et al., 2005; Noar et al., 2007) more important than in designing programs that
address multiple needs of stakeholders simultaneously within their own local context. Although each
local solution must be unique, the integrated program approach is portable and can be deployed
on a large scale for greater population-level impact on public health (Center for Communication
Programs, 2017).

Sustainability
Another aspect of scale is program sustainability. Donor investment has played a key role in expand-
ing attention to this concern. Three global investments in the past decade stand as exemplars: the
Shaping Demand and Practices (SDP) project supported by the Bill & Melinda Gates Foundation,
the Health Communication Capacity Collaborative (HC3) funded by USAID, and the Breakthrough
ACTION project, also funded by USAID. As described later, these multiyear, multinational invest-
ments not only leave behind local capacity to do effective health communication but also enable
an unusual level of opportunity for cross-national sharing of experience and comparative research.
In 2010, the Bill & Melinda Gates Foundation funded the SDP project to improve use and
effectiveness of reproductive, maternal, neonatal and child health, and nutrition services (note the
integration goals) in Bihar state of India. In soliciting bids for this five-year (2010–2015), $40 million
grant, the foundation mandated the following objectives: (a) to impact knowledge, attitudes, and
practices to achieve behavior change and uptake of key family health interventions and approaches,
(b) to build on lessons learned from past foundation investments, and (c) to sustain grant outcomes
by leaving behind communication products, tools and approaches within the National Rural Health
Mission (NRHM) and Integrated Child Development Services (ICDS) programs and a wide range
of capacitated and actively engaged media and private sector players.
Overlapping in time with the SDP project, USAID continued its historical support for global
health communication dating back to the 1980s with a $113 million cooperative agreement for the
HC3 project (2013–2018) with the mandate to (a) increase the capacity of indigenous organizations
to design, implement, manage, and evaluate evidence-based health communication interventions
and (b) establish proven systems for professional development in health communication. By the end
of 2018, the HC3 project had been active in 34 countries in South and Southeast Asia, the Middle
East, Sub-Saharan Africa, Latin America, and the Caribbean, supporting local governments, civil
society organizations, and communities to design, implement, and evaluate health programs in fam-
ily planning, reproductive health, maternal and child health, HIV, TB, malaria, and—as outbreaks
emerged during that period—Ebola and Zika.
USAID’s most recent global health communication investment is the Breakthrough ACTION
project (2017–2022), a $300 million effort with a continued focus on sustainability and these objec-
tives: (a) to improve social and behavior change (SBC) capacity demonstrated by host-country
governments and local health and development program implementers, (b) to develop and apply
strategies for improved coordination and integration among SBC programs, service delivery, and
development program implementers, (c) to develop and deploy multi-institutional platforms at global
and regional levels, leveraged to share and coordinate around SBC challenges, and (d) to influence

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global, regional, and country SBC programming and investment agendas created to address priority
gaps and opportunities (Center for Communication Programs, 2021). As of this writing, Break-
through ACTION was providing technical assistance to social and behavior change activities (mostly
on health topics) in 30 countries. Such projects leave behind increased local capacity and enable
considerable cross-national comparative research.

Two Case Studies

This section of the chapter briefly describes two examples of health communication research and
practice that illustrate the chapter themes of gaps and priorities, cross-national theorizing and donor
involvement, and impact at scale.

Case Study 1: Improving Contraceptive Method Mix (ICMM) in Indonesia

The Improving Contraceptive Method Mix (ICMM) Project in Indonesia began in October 2012
and ended in November 2016 (Wahyuningrum & Harlan, 2017). It involved coordination from
multiple donor organizations and national, district, and local entities. It was jointly funded by
USAID, the Australian Department of Foreign Affairs and Trade (DFAT), and the Gates Institute at
Johns Hopkins University. Program implementation was provided by a partnership consisting of a
local NGO (the Cipta Cara Padu Foundation), the Directorate of Family Health at the Indonesian
Ministry of Health (MOH), the National Family Planning Coordination Board, and by district- and
community-level health offices and NGOs. Research activities were led by the Center for Health
Research at the University of Indonesia. Technical assistance was provided by the locally staffed
Indonesia office of the Johns Hopkins Center for Communication Programs.
Although Indonesia was once regarded as a family planning (FP) success story, progress had stalled
since the early 2000s when the government decentralized the health infrastructure, leaving decisions
about policy and funding to the local level. Baseline data showed that more than half of Indonesian
couples who wanted to stop childbearing and not merely space their next birth were still relying
on short-acting methods such as oral contraceptive pills and injectables, sometimes for ten years or
more. This mismatch of method with fertility intentions pointed to the lack of availability with and
familiarity with longer-acting contraceptive methods to those who wanted them. Evidence-based
advocacy—such as that applied through ICMM—can help overcome the effects of decentralization
and ensure that family planning programs are strong throughout the country. The ICMM project
was designed to address this concern through targeted district-level advocacy by local decision mak-
ers and local outreach groups to revitalize local advocacy and health promotion activities and make
the case for larger family planning budgets and increased availability, training, and communication
about long-acting contraceptive methods.

The ICMM Approach

Wilkins (2014) argues that advocacy communication almost always has a political dimension because
it aims to support a particular cause that has personal or public value and the distribution of material
and immaterial resources in pursuit of those values. In the broader context of development com-
munication, Jacobson (2016) describes economist Amartya Sen’s theory of social choice, in which
development equals the people’s freedom to choose the things they value (functionings) coupled with
the ability to achieve what is valued (capabilities; Sen, 1999).
The advocacy work of ICMM reflected these principles and was modeled on the methodology of
the earlier Advance Family Planning (AFP) initiative (Bill & Melinda Gates Institute, 2020). Dating
from 2009, AFP is a global, evidence-based advocacy effort designed to improve access to and use of

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FP services, information, and supplies by increasing financial resources, decreasing policy barriers,
and increasing the perceived importance of family planning among policy makers at global, regional,
national, and subnational levels. The approach uses locally gathered data and evidence to develop
advocacy activities, which inform knowledge exchange activities (through mapping and identifica-
tion of knowledge needs). An advocacy package is then developed to expand district mobilization
of FP-related resources and activities in underserved areas.
The ICMM project began by identifying multi-sectoral FP “champions” (existing spokespeople,
advocates, and stakeholders) at the province and district levels who were considered to have resources
and networks to support the implementation of FP programs. These champions were invited to an
advocacy planning workshop, where the participants developed and agreed to a shared vision and
commitment to the project, discussed how contraceptive choice and empowering couples to manage
their fertility could have an impact on multi-sectoral issues (e.g., education, labor, health, women’s
empowerment, human resources) and identified constraints (e.g., financial, programmatic, budget-
ing, and investment) that would need to be addressed by local communities and government units,
as well as benefits that strong local FP programs could bring.
At the national level, the ICMM team designed and implemented advocacy activities based on
input from the subnational stakeholders. Existing District Working Groups (DWGs) were revitalized,
or new ones formed in project areas, and a Core Working Group (CWG) of FP experts provided
overall technical guidance. The overall goal was to create an enabling environment: developing or
revising policies/regulations to support FP, facilitating official authorization letters, enabling smooth
implementation of health insurance services, and ensuring the allocation of resources (human, net-
works, equipment, facilities) to be managed by local stakeholders and partners.
The advocacy communication was designed to encourage legislation and policy agreements at
the regional and district levels that permitted relevant stakeholders to allocate resources and engage
in activities to address family planning challenges they had identified themselves. Advocacy com-
munication also made a case for resource allocations to fund and support family planning services,
commodity procurement, and outreach/health promotion activities, especially at the community
level. These advocacy efforts were carefully timed to match planning and funding cycles and targeted
to the decision makers and interest groups responsible for family planning and village development
programs. Three districts in East Java province (Kediri, Tuban, and Lumajang) and in three districts
in Nusa Tenggara Barat province (Sumbawa, East Lombok, and West Lombok) were selected as
treatment sites, and six comparison/control districts in each province were also selected.
Multiple sources of data were needed to document program results. Cross-sectional pre- and
post-intervention household surveys (n = 13,127 in intervention sites and n = 13,137 in control
sites) assessed community exposure to the local outreach and communication activities, as well as
knowledge, attitudes, and practices related to FP use. Service statistics were collected from health
facilities in control and intervention districts about contraceptive commodity supplies and distribu-
tion, staffing levels, client volume, and service delivery outcomes. District-level working groups
carefully documented the number and types of advocacy, outreach, and communication activities,
as well as the direct outcomes of advocacy, including policies published and enacted, authorization
letters provided, and details of funding allocations at the district and community levels.

ICMM Results
This is one of the first studies to demonstrate the causal link between advocacy communication,
political commitment (in terms of the amount of money and other resources that communities
allocated for family planning), local health communication activities, and the increased use of
long-acting contraceptive methods. In the six treatment districts where ICMM was implemented,
budget allocations at the district level for family planning communication activities and community

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outreach increased from an average of Rp 985 million (USD 74,000) in 2013 to an average of Rp
1.3 billion (USD 100,000) in 2016. This advocacy approach was also effective in engaging stake-
holders in family planning working groups at the sub-district and village levels and helped imple-
ment effective family planning programs in a decentralized context. In ICMM-supported districts,
village budget allocations for family planning increased by more than 300% from Rp 2.2 billion
(USD 165,000) to Rp 6.7 billion (USD 503,000) between 2012 and 2015. These were not external
funds; they were allocations from local discretionary budgets, reflecting local commitment to family
planning as a personal and public health need. Women in the intervention districts were signifi-
cantly more likely to be exposed to messages about and to use long-acting contraceptive methods
after the advocacy intervention than they were before it. The study showed that the odds of mar-
ried women using long-acting methods was higher, ranging from 12% higher in East Java to 31%
higher in West Nusa Tenggara. In control districts, there was no significant change. These results
show that evidence-based advocacy can be effective to elevate family planning programs, expand
the method mix, and more fully meet the family planning needs at scale, but it took multilevel
integration from the national level down to local community organizations and households to make
the program work.

Case Study 2: COVID-19 Communication Research and Pandemic

Response
Concerns about COVID-19 have gripped the world since early 2020, and it is possible that more
communication research will have been conducted on the virus in the first year of the pandemic than
on any other health topic. This case study describes one aspect of the global response that illustrates
again the chapter themes of gaps and priorities, donor involvement and integration, and impact at
scale.
In 2005, the WHO began to organize the Global Health Security Agenda (GHSA), now a con-
sortium of 69 countries united “to address priorities and gaps in efforts to build and improve country
capacity and leadership in the prevention and early detection of, and effective response to, infectious
disease threats” (GHSA, 2021, para 2). One of the GHSA initiatives is to support joint external
evaluation (JEE) exercises at the country level to assess national capacity and foster effective response
to infectious disease outbreaks (WHO, 2018). This includes nationally oriented risk communication
and community engagement (RCCE) working groups. These groups, consisting of national and
civil society entities in each participating country, are formed to help plan and support these com-
munication efforts. They have played an active role in COVID-19 communication response since
that outbreak began to emerge in January 2020, with activities supported by national funding sources
as well as international donor organizations.
Other organizations have also played a global role. Early in 2020, Facebook’s Data for Good
initiative (Facebook, 2021) funded efforts to conduct a series of global COVID-19 Preventive
Surveys in collaboration with the WHO, the Massachusetts Institute of Technology (MIT), Johns
Hopkins CCP, and the Global Outbreak Alert and Response Network (GOARN). Beginning on
July 6, 2020, active adult Facebook users in 67 countries were randomly recruited via invitations
on Facebook. Of the 67 countries, 23 were multi-wave countries, in which data were collected
approximately every other week. The remaining countries were surveyed three times (July 2020;
November 2020; March 2021). Sample size varied by country and was generally between 3,000 and
6,500 participants. To partially compensate for potential bias related to disparities in online access,
samples were weighted to match national socioeconomic profiles. By late March 2021, 19 waves of
data collection were completed and nearly two million people had participated in the survey. Ques-
tions on the survey were the same across all countries (translated into the main national languages)
and covered the following topics: COVID-19 prevention behaviors, sources and trust in sources of

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information about COVID, vaccine acceptance, locus of control, self-reported health status, gender,
employment, risk and efficacy perceptions, and perceptions of social norms.
The data are publicly available upon request. One major use has been to support RCCE task
forces around the world to develop COVID communication prevention strategies. An interactive
KAP (knowledge, attitudes, and practices) COVID data dashboard (Babalola et al., 2020) allows
users to explore trends over time and relationships between psychosocial, demographic, communica-
tion, and behavior variables cross-sectionally and over time in wave countries, as well as to explore
audience segmentation strategies at a national level in most countries and at a state level in two of
the biggest countries, the United States and India. By late March 2021, more than 57,000 users had
accessed the data dashboard.
Gathering data and making them publicly available through a dashboard are only the first steps,
though. Public health scholars and professionals also need training in how to use theory- and evidence-
based data for risk communication planning. To address this need, webinars with RCCE task forces in
eight countries and with working groups from UNICEF, the WHO, the Red Cross, and USAID were
hosted, with USAID funding through the Breakthrough ACTION project, to teach users how to
navigate the dashboard and analyze the data. The goal of this global technical assistance was to gener-
ate recommendations for nationally tailored communication strategies based on the unique patterns of
demographic, psychosocial, and media use predictors of prevention behavior at national and regional
levels revealed by the survey data. Although the survey used standardized forms of questions across all
countries surveyed, responses to those questions clearly represent different orientations to the underly-
ing constructs, such as perceived norms and what norms mean in one country compared to another.
When attention began to shift toward vaccination against COVID-19, vaccine acceptance
became a major focus for analysis of these data, and additional questions were added to the survey to
support vaccination rollout communication strategies. In April 2021, the KAP COVID survey was
merged with another global Facebook-supported COVID-19 Symptoms Survey (Facebook, 2021),
jointly managed by Johns Hopkins University, MIT, Carnegie Mellon University, and the University
of Maryland, to further support coordinated global response to the pandemic. The KAP COVID
dashboard with interactive data visualization was updated to cover the new content.

Concerns and Controversies

The COVID-19 pandemic has exposed many gaps in our ability to respond to global health issues
(Strathdee et al., 2021). International donor investment is not the solution to all health challenges,
but the history of global health and development indicates that it does provide unparalleled opportu-
nities for cross-national comparative study, longer project timelines that allow more continuity over
time, and interventions at a scale that can produce significant population-level impact in health and
development outcomes.
There continue to be disconnects between academic and applied research in international set-
tings. Academic research funding often supports independent researchers with scholarly agendas
but is relatively limited in scale. Publications that result tend to be disseminated at conferences and
in journals that do not gain wide exposure in LMICs. Donor-funded projects in the Global South
typically have pragmatic public health interests in mind and operate on a much larger scale, but they
sometimes pursue goals in ways that are not always aligned with local values and priorities or with
sufficient participation by local stakeholders. Results of these efforts tend to circulate among govern-
ment agencies and implementing partner organizations but are disseminated less within academic
networks. These gaps are overcome to some extent through international conferences and through
exchange among international donor-funded projects, but more intentional effort is needed to build
truly global multilevel dialogue and synthesis.

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In 2021, there is some indication that widely recognized trends toward ethnic nationalism,
populism, and authoritarianism in the preceding decade may be receding, but if these tendencies
continue, they will pose challenges for international cooperation and investment in health commu-
nication. Growing attention to and support for anti-racist policies in many parts of the world suggest
increased openness to analysis of race-, gender-, and age-related disparities and the structural forces
that sustain them. Blindness to the social determinants that perpetuate disparity will continue to
plague global health communication efforts to achieve the goals of social justice and equity embod-
ied in the WHO definition of global health, unless we devise better ways for communication to
address them (see Chapters 29 and 35, this volume).

Future Directions for Research

As noted earlier in this chapter, continued multinational comparative research may be needed to
develop more nuanced theoretical frameworks that explain cultural differences in response to com-
munication processes. There is considerable literature on culture-centered theorizing, but more
often than not it is Western theories that are applied in non-Western settings. Relatively little
research explores how non-Western constructs such as compassion or the wholeness of a person
might pertain to or be incorporated into widely-used theories, leading to more nuanced global
theorizing.
Multinational comparative research may also help identify where communication resources and
programmatic attention are insufficient to meet needs, as well as the subnational and even local stake-
holder groups that require tailored communication strategies to ensure better and more equitable
health outcomes. Earlier parts of this chapter identified some health areas that have been understud-
ied, specifically communication to address noncommunicable and lifestyle diseases and issues affect-
ing certain demographic segments such as children over the age of five and the elderly.
Mental health is another relatively neglected area of communication research (see Chapter 5, this
volume). The Ebola outbreak in 2014–2016 drew attention to mental health issues resulting from
pandemic illness, and the COVID-19 era again brought to light how isolation, social disruption, and
unequal access to testing, vaccines, medical care, and information have caused a massive increase in
anxiety, depression, and domestic violence, as well as dementia among the elderly. It may be that
various applications of communication can help address these issues by improving information flow
and social connection (Amsalem et al., 2021), but much more research is needed to understand these
phenomena.
Finally, the challenges posed by social determinants and structural inequity—and how to address
them through communication—deserve far more research attention. The fundamental causes of
inequity are well-known: discrimination, poverty, caste, location. But how they are manifested and
addressed vary across settings in the world, particularly as they may apply to health and personal
agency to pursue it. Wherever we work, we typically assume too much homogeneity within social
categories, but often multiple systems of inequality affect an individual’s lived experience. Global
health communication research could develop better theories of communication and disparity and
of communication structures and agency, as well as evidence-based guidelines with practical implica-
tions for communication practitioners. What can communication do to effectively address disparity
without further exacerbating the problem?
The challenges of global health communication are enormous, but so is the promise of com-
munication to address those challenges. More than most domains of communication research and
practice, the breadth and vision of global health communication presents opportunities to effect
population-level social change and contribute to the growth of the communication discipline, if we
ourselves are up to that challenge.

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 32
PUBLIC HEALTH CRISES
Lindsay Neuberger and Ann Neville Miller

In public health crises, diverse stakeholders must comprehend threats and understand how to
act in order to reduce risk and lessen negative consequences. Effective communication (i.e., the
right messages from the right sources at the right time) during public health crises saves lives by
equipping individuals and organizations with information needed to make safe and responsible
decisions.
Research on public health crises came to prominence globally following the anthrax-related bio-
terrorism incidents in the United States in 2001 and the severe acute respiratory syndrome (SARS)
outbreak of 2002. At that time, the Centers for Disease Control and Prevention (CDC) established
public health emergency preparedness (PHEP) cooperative agreements to work with local stake-
holders in guiding U.S. public health crisis responses (CDC, 2005). On the global stage, Interna-
tional Health Regulations were formulated, defining a public health emergency of international
concern (PHEIC) as a serious, sudden, unusual, or unexpected event that has implications beyond
state borders and could necessitate international action for effective management (World Health
Organization [WHO], 2005). Since SARS, the World Health Organization (WHO) has declared
five more PHEICs: swine flu, polio, Ebola, Zika, and COVID-19.
The four-legged stool approach advanced by Gamhewage (2014) of the WHO identifies health
communicators and health communication scholars as essential components of effective public
health crisis preparation, response, and management. The model proposes that four equally strong
components are required for public health crisis preparation and response. One leg is made up of
social scientists, health educators, and behavior change experts who are able to perform outreach
in communities. Another leg consists of media (including social media) experts, communication
professionals, and spokespeople who assist in spreading messages. The third leg is experts in health
systems who use policies, plans, procedures, and management to help strengthen essential health
systems. Operational research experts who produce evidence and technical guidance constitute
the fourth leg. These four legs of the stool rely on each other to be optimally effective, and they
must also be supported by a broader network ready and willing to engage as necessary in crisis
situations.
This chapter proceeds by providing an overview of the current state of public health crisis com-
munication research before describing major types of public health crises, outlining key theories of
crisis and risk communication, and providing insights into future directions for communication-
focused work about public health crises.

DOI: 10.4324/9781003043379-39 475

 Lindsay Neuberger and Ann Neville Miller

Current State of Public Health Crisis Communication

Health and risk communication research have become increasingly integrated in both national and
international preparation for, response to, and recovery from public health crises. Although it still
lags behind more frequently researched health communication issues such as cancer and tobacco,
public health crisis research is a robust field of study (Nazione et al., 2013). This literature is charac-
terized by a strongly scientific perspective, and we have focused our review on that work. However,
some research about differential effects of crisis by poverty, culture, or race adopts a critical-cultural
perspective (e.g., Balaji, 2011; Kim & Dutta, 2009). Because each crisis is unique, case studies are
the most frequently used approach to studying crisis communication (Veil, 2011). Quantitative
approaches to investigating the field include surveys (Yang, 2015), experiments (Smith, 2012), tab-
letop exercises (Zhou et al., 2015), program evaluation (Nakano et al., 2019), and content analysis
(Ihekweazu, 2017; Sutton et al., 2015). Qualitative work has been equally rich, with interviews (Ste-
phens, 2020), critical discourse analysis (Solman & Henderson, 2019), memorable message examina-
tions (Miczo et al., 2013), and narrative analysis (Su, 2012) being frequently employed.
Later we review evidence generated by this wide range of research methods about organizational
issues in public health crisis communication and crisis messaging. Our summary draws heavily from
a recent set of systematic reviews commissioned by the WHO (2017). The reviews were conducted
by an international body of experts to probe the current state of knowledge in major topical areas of
public health crisis communication.

Organizational Factors in Crisis Communication

Public health crises vary dramatically, ranging from hurricanes to influenza to oil spills. They can
be highly localized as is the case with tornadoes, broadly destructive like drought, international like
COVID-19, or planetary in scope like climate change. These varying scopes require different levels
of preparation and response. At all levels, however, intra- and inter-agency coordination and infor-
mation sharing, staff capacity building, and organizational trust are critical concerns. Research indi-
cates that emergency risk communication should be accorded a strategic role in global and national
emergency preparedness and response leadership teams (Jha et al., 2018). Organizational networks
must be built across geographical, disciplinary, and, where appropriate, national boundaries. Such
communication planning must occur well in advance and be a continuous process with a focus on
both preparedness and response (Toppenberg-Pejcic et al., 2019).
Stakeholders are individuals or organizations with a connection to a community facing a public
health crisis (Sopory et al., 2019). Close partnerships and open communication between diverse
stakeholders are essential in ensuring effective preparation, response, and recovery; it is best to
develop these partnerships before public health crises and not during or after them (Jha et al., 2018).
Stakeholder communities will vary across contexts, but frequent stakeholders in public health crises
include residents, business/community/political leaders, schools, community groups, cultural and
faith-based organizations, union or labor organizations, media, federal and local government agen-
cies, healthcare providers, and nonprofit organizations.
Although community engagement is frequently extolled as valuable in public health crises, sys-
tematic review findings reveal that it is rarely explicitly studied (Novak et al., 2019). Extant research
indicates that communication planning is most effective when it is sensitive to stakeholders’ needs,
is participatory, and incorporates feedback from affected groups. Thus, international agencies are
advised to identify people whom the community trusts and build relationships with them far in
advance of any crisis event. Involving such people in decision-making can promote interventions
that are collaborative, contextually appropriate, and community owned; it can also promote the free
flow of information across sectors (Toppenberg-Pejcic et al., 2019).

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Despite the vitality of scholarship on public health crisis communication, empirical evidence on
the specifics of effective capacity building and training is scant. What little evidence there is suggests
that preparation and training of personnel should be organized regularly and focus on coordination
of communication across agencies (Miller et al., 2017). Trainings and tabletop exercises (activities in
which key emergency management personnel are gathered together to discuss responses to simulated
emergency situations) can be useful for accomplishing this (Jha et al., 2018). However, with rigor-
ous investigations of training effectiveness largely absent in literature, it is not possible to say with
confidence what elements of training should be emphasized (Miller et al., 2017).

Messaging Channels and Characteristics

It is essential that communication in public health crises contain clear, comprehensible informa-
tion customized for diverse audiences and presented via trusted sources and channels (Sopory et al.,
2019). Among the many options available, mass media campaigns (e.g., earthquake preparedness
messages), media outreach/advocacy (e.g., coordination with media organizations to promote stories
about infectious diseases), social media (e.g., hurricane pathway status updates), interpersonal com-
munication (e.g., speaking with someone about gun violence), and integrated methods combining
multiple strategies are the most frequently employed in public health crises.
Effective social media engagement has become a core issue in crisis communication. Social media
are frequently used for emergency risk communication purposes, but they have varied effects (Eckert
et al., 2018). Therefore, they should not fully replace traditional modes of communication (Top-
penberg-Pejcic et al., 2019). Rather, social media and traditional media can be part of an integrated
strategy with other forms of communication to achieve convergence of verified, accurate informa-
tion. Social media may be used to engage the public, facilitate peer-to-peer communication, create
situational awareness, respond to rumors, monitor public reactions and concerns, and facilitate local-
level responses (Sopory et al., 2019). Audiences frequently turn to traditional media for in-depth
explanations after they have first been alerted to disastrous events via social media.
Recent work on social media use before, during, and after natural disasters provides insight into
the ways organizations communicate essential health and safety information with the public, as well
as details about how citizens use social media. In their examination of messages about flooding in
Colorado, Sutton and colleagues (2015) found that terse social media messages can deliver impera-
tive/instructional and declarative/explanatory messages, both of which can be beneficial in crisis
situations. Spence and colleagues (2015) examined Twitter use before Hurricane Sandy and found
that expressions of information and affect were most frequent, yet humor, insults, and spam were
also present. Usable information about recommended behaviors actually became more difficult to
locate as the storm progressed.
With respect to message content, research indicates that effective communication is linked to
functioning and accessible services; is transparent, timely, and easy to understand; acknowledges
uncertainty; addresses affected populations; and promotes self-efficacy (Reynolds & Seeger, 2005).
Messaging before, during, and after public health crises can be appropriately adapted to cultural
contexts if it is pretested with relevant audiences and then evaluated and edited as crises evolve.
Furthermore, evidence is strong that explaining risk in technical terms does not promote risk
mitigation behaviors. Messages in times of crisis that promote specific and realistic actions that peo-
ple can take to protect themselves are more likely to result in risk mitigation behavior than more
general messages. Both the accuracy of messages and their tone are important. Messages need to
express compassion and concern (Sellnow et al., 2019). They need to promote self-efficacy (Top-
penberg-Pejcic et al., 2019). They should emerge early in the outbreak (Reynolds & Seeger, 2005),
and they should come from different information sources but be consistent (Sellnow & Seeger,
2013). For cases in which guidance changes, reasons for the change must be explained and puzzling

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elements clarified (Toppenberg-Pejcic et al., 2019). Importantly, uncertainties inherently present

in public health crises should be acknowledged and effectively communicated instead of avoided
(Reynolds & Seeger, 2005; Sopory et al., 2019). Communication to the public by authorities should
include explicit information about what is known and not known about risks, events, and interven-
tions at a given time. This is true regardless of type of public health crisis.

Types of Public Health Crises

Three main types of public health crises frequently investigated by health communication scholars
are infectious diseases (e.g., H1N1, Ebola, Zika, COVID-19), natural disasters (e.g., hurricanes,
earthquakes, tornadoes, floods), and human-caused disasters (e.g., climate change, radiation, fires,
gun violence, oil spills). Of these emergency risk communication contexts, infectious disease is most
commonly studied (see Eckert et al., 2018). This section provides a broad overview of each major
type of public health crisis, concluding with examples of health communication scholarship in the
area and identifying themes in the extant literature.

Infectious Diseases
Infectious diseases are caused by bacteria or viruses and are often spread from person to person or are
passed to humans by animals or insects. Infectious diseases are particularly problematic when they
are highly contagious, and International Health Regulations clearly outline communication as a core
part of public health responses to this type of crisis (WHO, 2005). Increasing sanitation and immu-
nization practices were thought to greatly attenuate infectious disease risk; however, modern highly
infectious diseases, including SARS, H1N1, Ebola, Zika, and COVID-19, have demonstrated the
need for continued vigilance and effective communication with the public and between organiza-
tions (Holmes, 2008).
Health communication research in infectious disease contexts has focused on themes such as
stigma (Smith & Hughes, 2014), cultural differences (H. Oh et al., 2012), efficacy messaging (Even-
sen & Clarke, 2012), media portrayals (Jerit et al., 2018), and campaigns (Poehlman et al., 2019). For
example, Sastry and Lovari (2017) examined Ebola narratives on the WHO and CDC Facebook
pages, finding evidence of a clear Western lens and three phases of narrative development (contain-
ment, international concern, impact on the United States) over time as the 2014 Ebola situation
evolved. Another example of health communication research in the context of infectious disease is
a longitudinal survey of Americans about their trust in government and spokespersons regarding
H1N1 pandemic messaging (Freimuth et al., 2014). Emerging research on COVID-19 (e.g., Ma &
Miller, 2020) suggests continued utility of health communication research in this space.

Natural Disasters
Natural disasters vary widely across global climates and include environmental disruptions ranging
from hurricanes, tsunamis, and tornadoes to water events such as floods and draughts, as well as
extreme winter weather, earthquakes, landslides, and even volcanic eruptions. These natural disasters
have varied warning periods ranging from months to moments, and thus a diverse body of litera-
ture focused on communication in these widely ranging contexts has emerged. Reported natural
disasters have increased over recent history, and impacts (e.g., human, environmental, economic) are
similarly intensifying over time (Guha-Sapir et al., 2004). Climate change is also likely to increase the
number of extreme natural events, so this work remains vital (see Chapter 33, this volume).
There are substantive differences among types of natural disasters. For example, hurricanes often
make slow and clear progressions that allow considerable time for preparation, whereas earthquakes

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and tsunamis develop on a much more rapid timeline. Because of this variation, a case study approach
is common in this literature (Zhou et al., 2015). For example, Balaji (2011) analyzed media coverage
following the Haiti earthquake in 2010 and exposed problematic discourses of pity that reflect the
power relations that existed between racial groups. Stephens (2020) gathered stories from Houston
residents after Hurricane Harvey and found insufficient persuasive communication regarding evacu-
ation. He quite simply suggests, “communication can make a difference” (p. 527) in natural disaster
preparation and recovery.

Human-Caused Disasters
Although some public health crises are unavoidable, many are a direct result of human influences.
These crises range from those that are global and long term in nature (e.g., climate change) to more
localized, shorter-term crises (e.g., water quality, gun violence), and they are related to industrial
(e.g., nuclear and chemical accidents), regulatory (e.g., food safety), and politically motivated (e.g.,
bioterrorism) factors. Health communication research can provide valuable analysis and recom-
mendations for governments, organizations, and publics in these contexts. Research focused on
effective communication surrounding climate change issues, which has ranged from examining fear
and humor appeals to identifying media narratives about climate change, has maintained a consistent
presence in the health communication literature for decades (Anderson, 1991; Chadwick, 2016).
Communication scholarship on human-caused crises like gun violence is growing. Quantitative
content analysis of newspaper coverage of several gun violence incidents revealed various frames
ranging from pro and con gun control arguments to mental health issues, school/workplace security,
and even explicit framing as a public health issue (DeFoster & Swalve, 2018). Another example of
health communication research in the context of a human-caused public health crisis is the system-
atic development, revision, and testing of a radiation-focused health literacy toolkit following the
Fukushima nuclear disaster (Goto et al., 2018).

Theoretical Bases for Understanding Public Health Crises

Crisis theory has largely been driven by practice. After a crisis, practitioners have tended to reflect
on agency performance, often through after-action reports, seeking to formulate models that would
help them respond more effectively to future crises. These findings are then leveraged in subsequent
crisis training. Eventually, the accumulated lessons learned crystalize into theorizing and systematic
programs of research (Sellnow & Seeger, 2013). The result of this practitioner-centric origin is a
wide range of theories generated from an equally broad range of disciplinary perspectives. Further-
more, many theories have been developed via case study research methods to aid understanding of
specific types of crises. Given this multifarious background, as well as space limitations, it is impos-
sible to present a comprehensive theoretical overview in this chapter. Therefore, we have limited
our examination to three types of crisis theories that are especially relevant to public health commu-
nication: (a) stage models of crises, (b) theories of crisis response, and (c) organizational learning as
an outcome of crisis. For each of these categories, we discuss two or three specific theories, and we
point to their application toward understanding public health crises. Readers interested in a broad
array of health communication theories, including those related to crisis communication, should
refer to Thompson and Schulz (2021).

Stage Models of Crises

Public health crises not only upend individual lives but they also disrupt economies, alter ecosystems,
displace populations, and unsettle social structures (Sellnow & Seeger, 2013). With one of the defining

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features of crisis being disorder, a classic approach to theorizing has been to identify common clusters
of events across crisis types (e.g., Fink, 1986). As the label implies, stage models attempt to help prac-
titioners make sense of crisis events by identifying a series of discrete phases in the way crises unfold.
Stage models assume that failure to respond quickly and decisively at early stages may result in
the extension of subsequent stages. Decision makers typically have to act very quickly to reduce the
threat of crisis and may not have time to gather complete information about cause or how the inter-
connected system of public health organizations and stakeholders will behave. Thus, early responses
hold the very real possibility of not only failing to reduce the severity of the crisis but also accen-
tuating harm. Shifting behavioral advice in the COVID-19 pandemic regarding mask wearing, for
example, may have decreased credibility of public health sources among certain sectors of the public
and fueled resistance to the practice.
Numerous stage models exist. According to Veil (2011), the most commonly applied is the three-
stage model, which posits pre-crisis, crisis, and post-crisis phases. Pre-crisis is the time during which
threats are incubating and growing. The biggest issue in this stage is preparation. The crisis stage is the
actual trigger event. Crises are usually dramatic. Systems designed to mitigate potential crises often
fail, and new response patterns must be developed. In the post-crisis phase, the threat dissipates, and
people feel a sense of relief. Post-crisis is characterized by sensemaking about the event, analysis, and
evaluation. Other stage models emphasize variations on this theme. Jacques (2007), for instance, rather
than focusing on sequential steps, advanced four major clusters of related issues that come into play
in each stage of a crisis. Hale et al. (2005) proposed a spiral rather than linear model, in which actors
make rapid, judgment-based evaluation of potential actions and then correct course as they evaluate
response effectiveness. Mitroff (1994) and Coombs and Holladay (2002) each divided the pre-crisis
stage into an initial signal or prevention stage at which warning signs can be detected and then a prob-
ing or preparation stage at which organizations search for risk factors and attempt to mitigate them.
The stage model most specific to public health crises is the crisis and emergency risk commu-
nication (CERC) model (Reynolds & Seeger, 2005). Developed by the CDC following the 2001
anthrax crisis, CERC was part of a comprehensive effort to build capacity among public health
agencies (Miller et al., 2021; U.S. Department of Health and Human Services and CDC, 2018; Veil
et al., 2008). The model divides public health crises into five stages and prescribes communication
strategies to implement at each point. During the pre-crisis stage, communication activities should
focus on risk messages such as urging publics to prepare and establishing inter-agency partnerships
in case the identified threat evolves into a crisis event. When the initial event occurs, messages to the
public and individuals affected by the crisis should be designed to reduce uncertainty, promote reas-
surance, and foster self-efficacy. During the maintenance stage, as the crisis unfolds, messages should
serve similar functions as at crisis onset, but they should also provide more information about the
crisis and correct any misperceptions held by the public. In the resolution stage, after the crisis is
resolved, communication to the public and affected individuals needs to prioritize restoration and
rebuilding and honest reporting of findings about factors that caused the crisis. Finally, in the evalua-
tion stage, public health practitioners should reflect on lessons learned and suggest actions for future
such crises. The CDC has provided CERC training to tens of thousands of public health profes-
sionals through both face-to-face classroom and computer-based education across the United States.
Principles of CERC have been leveraged to address such varied public health crises as Ebola (Kieh
et al., 2017), avian influenza (Vos & Buckner, 2016), depleted uranium exposure (Cicognani &
Zani, 2015), winter storms (Rice & Spence, 2016), and chemical spills (Thomas et al., 2016).

Theories of Crisis Response

In this section, we focus on two theoretical perspectives that have been influential in the study of
public health crisis response: chaos theory and community resilience. Whereas chaos theory centers

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the unpredictable nature of crises, theories of community resilience foreground the integral role that
communities play in mitigating disaster. Each offers an important perspective toward crisis response.
With origins in the physical sciences, chaos theory holds that systems act in nonlinear ways and
their behavior depends on surrounding conditions. Several principles of the theory are especially
relevant to human systems in crisis (Murphy, 1996). The principle of sensitive dependence on initial
conditions, often referred to as the butterfly effect, states that something as seemingly tiny as the flap-
ping of a butterfly’s wings can start a chain of events that leads to massive consequences. Minor com-
munication errors, oversights, and misinterpretations have led to a range of famous crises, from Pearl
Harbor to the Shuttle Challenger disaster (Seeger, 2002). The principle of bifurcation is the sudden
change in a system’s direction or structure that occurs with a crisis-induced collapse of sensemaking.
When bifurcation occurs, interventions will be unsuccessful until people and organizations abandon
established routines and innovate (Freimuth, 2006). Strange attractors are elements in a system that
help it find new order and begin to emerge from bifurcation (Murphy, 1996). In public health cri-
ses, these could be factors like family, a particular community leader or organization, or economic
resources (Seeger, 2002). Finally, self-organization is the point at which the system moves toward sta-
bility. Chaos theory has been applied to understanding several types of public health crises, including
flooding (Seeger, 2002), H1N1 flu (Speakman, 2010), water contamination (Getchell, 2018), SARS
(Nicholas et al., 2008), and hurricanes (Vanderford et al., 2007).
Theories of community resilience focus on responses that emerge from communities themselves
rather than public health agencies. The term resilience is a metaphor from physics and mathematics,
referring to the capacity of a material to return to equilibrium after a disturbance (Norris et al.,
2008). Resilient materials bend and bounce back when stressed; they do not break. Community
resilience in the face of crisis is the ability of a community to recover using its own resources (Cutter
et al., 2010); it is the ability to cope, pull through, and adapt to a crisis (Sellnow & Seeger, 2013).
Indeed, friends, neighbors, and family are usually the first responders in a crisis and are often highly
innovative in solving community problems. Resilience can be promoted through specific interven-
tions (e.g., Aldrich & Kyota, 2017).
Generally, factors affecting community resilience can be divided into two categories: (a) charac-
teristics of the community (e.g., number of resources, training, speed with which resources can be
deployed) and (b) characteristics of the disaster event (e.g., level of disruption, specific form it takes,
suddenness). For example, the 4R theory by the Multidisciplinary Center for Earthquake Engineer-
ing Research (MCEER), along with the Natural Hazards Center at Colorado State University, posits
such key community characteristics as (a) robustness, or strength of the system and its resistance to
failure and loss of functionality, (b) redundancy, or the ability to create back-up systems or substitu-
tions, (c) resourcefulness, or the capacity to mobilize resources (material, financial, human) for crisis
response, and (d) rapidity, which is the speed of response and recovery. Norris et al. (2008) propose
similar qualities but also emphasize the interaction between stressors and resources. If stressors are
too great or resources inadequate, communities will be disrupted. Theories of community resilience
have been applied to public health emergencies such as E. coli outbreaks (Lisnyj & Dickson-Ander-
son, 2018), the Flint, Michigan, water crisis (Fortenberry et al., 2018), earthquakes (Nian et al.,
2019), and refugee crises (Alameddine et al., 2019).

Organizational Learning as an Outcome of Crises

Finally, we turn to theorizing about the aftermath of crises. In a best-case scenario, crises can
become catalysts for change in the way organizations view themselves, their mission, and their
audience (Seeger, 2002). That is, they are opportunities for organizational learning. Simply stated,
learning occurs when organizations detect errors and, in response, make changes in policies, pro-
cedures, and structures (Veil, 2011). Organizational learning has been applied to such topics as the

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response of city, state, federal, and nonprofit organizations to the Ebola crisis in Dallas (Keyes &
Benavides, 2018), the Chinese government’s response to SARS and a baby formula contamina-
tion crisis (Zhang, 2009), HIV/AIDS (Ferlie & Bennett, 1992), internal hospital communication
(Simonsson & Heide, 2018), and the anthrax crisis (Veil & Sellnow, 2008). Although organizational
learning can happen on an ongoing basis through systematized processes, sometimes it takes the
shock of a crisis to bring about fresh understanding and openness to change (Roux-Dufort, 2007).
For governmental organizations, crises may facilitate learning by overcoming the inertia of bureau-
cracy and political considerations (Zhang, 2009). In this section we look broadly at organizational
learning as well as high reliability organization theory.
It is a hallmark of crises that they initially shock a system so radically that individuals and organi-
zations experience a collapse of sensemaking. Not only have familiar, orderly systems collapsed but
the mechanisms for addressing the crisis have collapsed as well. Members feel confused, ambiguous,
and disoriented. Weick (1993) refers to this as a cosmology episode. He described the necessary
response to cosmology episodes with the phrase, “Ready. Fire. Aim” (Weick, 2001, p. 177). That
is, in the midst of a crisis, organizations often have no choice but to act first and then examine the
consequences. The sooner they give up relying on the status quo and move toward new ways of
understanding, the better chance they have of navigating the crisis. They can develop that under-
standing in three stages: enactment (i.e., looking back at actions taken), selection (i.e., interpreting
which actions worked and why), and retention (i.e., subsequently preserving new meanings in
organizational memory). Sensemaking has been used to examine organizational response to health-
related crises like the water crises in Flint, Michigan (Nowling & Seeger, 2020), and Walkerton,
Ontario (Mullen et al., 2006), Hurricane Katrina (Castor & Bartesaghi, 2016), and a warehouse fire
in Nantes, France (Roux-Dufort & Vidaillet, 2003).
Making sense of experience is not enough, however, unless it translates into meaningful long-term
change. Change may take the form of shifts in structural elements like mission, general practices, or
organizational hierarchy (Seeger, 2002), but it may also involve attitudinal changes. Organizations
must work on moving past the crisis to heal. That means moving beyond anger, anxiety, insecurity,
and sadness and becoming positive and confident again. Unfortunately, it is not clear that most
organizations approach the outcome of crises in this way. It is much easier to prioritize returning
to the status quo as quickly as possible or convincing the public that the organization did not do
anything wrong (Roux-Dufort, 2000).
One approach to understanding the characteristics of organizations that learn and change effec-
tively is the study of so-called high reliability organizations (HROs), that is, organizations that oper-
ate in high-risk and potentially hazardous environments but are nearly error free (Roberts, 1989).
Researching tightly coupled and complex systems in nuclear submarines, flight deck operations, and
air traffic control, Weick and Sutcliffe (2011) asserted that five key principles distinguish HROs from
other organizations whose risk levels are less dramatic. First, high reliability organizations recognize
that even small things that go wrong are often early warning signs. That is, they are preoccupied with
failure. Second, they view small failures as indicators of trouble and therefore insights into the whole
system. They resist simplification and attend to nuances. Third, they are sensitive to operations in
the sense that they pay attention to what is actually happening rather than what workers intend or
plan to do. Fourth, HROs quickly correct events that have already occurred and continue to learn
even when facing serious setbacks. Fifth, they are careful to defer to expertise when responding to
crises. Often, it is not people at the top of the hierarchy who know the most but employees with
hands-on experience. The HRO model requires mindfulness at all levels of the organization. These
qualities can be purposefully cultivated, although the process will be neither quick nor easy, and no
well-documented blueprints exist to provide guidance (Tolk et al., 2015).
In summary, theories of crisis communication are derived from a broad spectrum of fields,
including communication, public health, emergency management, sociology, marketing, geology,

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meteorology, agricultural studies, organizational behavior, media studies, and rhetoric. They are
practitioner centered and often arise organically out of specific crises or crisis types. Given the
complex and multi-sectoral nature of major crises, this is not surprising, but it can present a bewil-
dering array of options for understanding how communication works in a public health crisis. We
also note that, like research in crisis communication more broadly, theory addressing crisis com-
munication has heretofore primarily been generated from Western nations, particularly the United
States (Eckert et al., 2018; Miller et al., 2017; Sopory et al., 2019). The culture-centered approach,
which is explicitly value laden and not only acknowledges but also privileges how health meaning
is culturally embedded, should be employed more extensively (see Dutta, 2008). Recent research
has used the culture-centered approach to examine public health crises such as benzene exposure in
China (E. L. Tan & Dutta, 2019). That such an approach is being applied to non-Western contexts
is encouraging, but there is a need for culturally appropriate theorizing from these same contexts if
crisis response is to be maximally effective.

Future Research
Given the strengths and weaknesses of existing literature, as well as trends in global health, the fol-
lowing topic areas appear especially important as foci for future research in the field.

Culture/Inequities
Communication inequalities across racial, ethnic, and socioeconomic groups are not uncommon
in public health crises. At-risk populations experience compounding uncertainties in public health
crises that only exacerbate the difficulties in their daily lives. For example, differential impacts of
infectious diseases have been well documented over time (e.g., the 1918 influenza pandemic) and
continue to this day (e.g., COVID-19) due to persistent societal norms of inequality (see Roberts &
Tehrani, 2020). Evidence from the MERS outbreak suggests that individuals with less education and
lower incomes and those from marginalized groups were less likely to be aware of useful information
about past pandemics (Lin et al., 2016).
Communication inequalities also persist in natural disaster contexts; research following Hurricane
Katrina (Taylor-Clark et al., 2010) and the 2010 earthquake in Haiti (Balaji, 2011) demonstrates
clear racial and political injustice in terms of preparation, response, media coverage, and public per-
ception. Even when considerable knowledge surrounding effective emergency risk communication
in natural disasters exists, it does not always reach the populations that need it, when they need it.
Yet the picture is complex. Although minoritized populations often harbor mistrust of public health
officials (e.g., Shoff & Yang, 2012), Freimuth and colleagues’ representative study of U.S. popula-
tion’s trust in government recommendations during the H1N1 crisis (2014) found that Black and
Hispanic participants reported higher government and spokesperson trust than did white people.
The authors suggested that this inconsistency with previous findings could be reflective of a temporal
rise in trust among Blacks and Hispanics early in the Obama administration, but they also pointed
out that the total variance in trust explained by demographic variables in the study was just 4%. They
argued that researchers need to look beyond demographics to understand factors influencing trust in
government during public health emergencies.

Social Media
Although it is important to note that access to social media in public health crises, or at any time, is
a privilege not all global citizens enjoy, social media are frequently used to communicate in public
health crises (Eckert et al., 2018). When effectively employed, social media can be used to both

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communicate information to and meaningfully connect with stakeholders and publics in times of
crisis. Emerging work on the influence of social media is present across public health crisis con-
texts (see S. Oh et al., 2020; see also Chapter 21, this volume). In their examination of tweets from
national ministries of health around the world, Guidry and colleagues (2019) found that infectious
diseases were frequently highlighted in social media but both coordination across nations and two-
way communication with the public were rare.
Evidence suggests that social media can have meaningful effects in public health crises, but sys-
tematic review work by Eckert and colleagues (2018) indicates that social media tools have not been
adequately employed, especially by government agencies. Future research about the role of social
media in public health crises should continue to analyze the large datasets available through the
platforms and also seek to better understand motivations for the use of social media in the human
experience. That is, social media are only truly social when people are involved; most substantive
research in this space currently focuses on analyses of content and does not examine the humans
involved in these processes.

Misinformation
Increased ease of content creation and rapid proliferation of potential social media outlets have led
to a crisis of misinformation (see Chapter 22, this volume). Put simply, misinformation is anything
explicitly false or considered incorrect by expert consensus (A. S. Tan et al., 2015). Misinformation
can lead to “confusion, frustration, indifference, information overload, or resistance to evidence-
based health recommendations” (A. S. Tan et al., 2015, p. 675) and represents a major issue in pub-
lic health crisis communication. Consider the potential implications of individuals knowingly (or
unknowingly) sharing false information about an approaching storm or infectious disease treatment
option; the effects of health misinformation can be harmful and even fatal.
Combatting the potentially negative effects of misinformation is essential, and fortunately there is
emerging evidence that refuting false information, elaborating facts, and accompanying information
with strong sources can address these issues (van der Meer & Jin, 2020). Importantly, the correction
of misinformation is more effective when there is a robust explanation and not just a refutation (van
der Meer & Jin, 2020). For example, a direct refutation stating there is no link between vaccines and
autism may correct misperceptions to an extent, but messaging with clear, corrective factual infor-
mation from a trusted source will likely result in stronger and more persistent effects.

Conclusion
In closing, it should be noted that as a relatively young area of communication research, there are
some gaps in crisis communication work in the field of public health. Relatively little research exists
addressing community involvement and communication training, and theory remains disparate.
However, the rapid growth of the field suggests that these gaps should be viewed more as opportuni-
ties than weaknesses. The work of health communication scholars who apply rigorous, theory-based
methods to investigating crisis communication is essential to the four-legged stool of effective public
health crisis preparation, response, and management. Most importantly, by equipping individuals and
organizations with information needed to make safe and responsible decisions during the cosmology
episodes of health-related crises, health communicators save lives.

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COMMUNICATING ABOUT THE
ENVIRONMENT AND HEALTH1
Amy E. Chadwick1

The environment and human health are linked through our exposure to toxic chemicals; air, water,
and ground pollution; climate change; extractive and energy industries; contaminated food; and
natural disasters. The theories, questions, and research areas of environmental health communica-
tion have many similarities to those of health communication. One key difference between envi-
ronmental health communication and health communication is a greater emphasis on community
and society-level behaviors as opposed to individual and interpersonal behavior. However, health
communication theorists, researchers, and practitioners can play important roles in addressing envi-
ronmental issues and their health effects (Chadwick, 2016).
This chapter reviews communication literature that links environmental and health issues.
Specifically, I discuss essays and research about (a) the social construction of environment and
health, including media coverage and media framing, (b) factors affecting public responses to
environmental health issues, including political ideology, risk and benefit perceptions, and social
support, (c) environmental health literacy, (d) persuasion and message design, including mes-
sage strategies and information seeking, (e) communication by organizations, including non-
governmental organizations, governmental organizations, industry, and health organizations, and
(f) environmental health, environmental justice, and climate justice movements. Approaches
to studying environmental health communication include humanistic-rhetorical analyses,
critical-cultural analyses, interpretive qualitative studies, and social scientific quantitative sur-
veys and experiments. The chapter also identifies future directions for environmental health
communication.

Social Construction of Environment and Health

How media cover and frame environmental issues and their connections to health plays a key role in
the construction of the public’s understanding of the environment, health, and risk. Communica-
tion researchers often conduct thematic or content analyses of media to determine content coverage
and framing of environmental health risks. Understanding what themes and frames dominate media
is important for understanding public knowledge, attitudes, and beliefs about environmental health
issues. However, nearly all these studies or essays assume, rather than test, the effects of the themes
and frames on public understanding, attitudes, beliefs, or behavior.

DOI: 10.4324/9781003043379-40 489

 Amy E. Chadwick

Media Coverage
Media coverage studies assess whether the media are connecting environmental risks to health.
Other research examines whether media coverage represents scientific understanding of the risks.
Content analyses investigate the effect of sociopolitical context on media coverage. Lastly, commu-
nication research also describes the effects of news outlet characteristics on media coverage.
Overall, media coverage connecting environmental issues to health risks is rare but increasing.
A content analysis of four Western U.S. states revealed that coverage of water issues rarely mentions
health risks associated with water (Mayeda et al., 2019). Five countries (Canada, China, India, the
United Kingdom, and the United States) have increased media coverage that connects heat waves
and wildfires to climate change. Although coverage increased, the frequency of media mentioning
climate change when covering heat waves or wildfires differed between the countries. Notably,
despite heat waves that have lowered living standards, media outlets in India often are not connecting
heat waves to climate change (Hopke, 2020). Coverage of climate change in five U.S. newspapers
has declined in the last four years; however, emphasis on the public health aspects of climate change
has increased (Weathers & Kendall, 2016).
Media coverage often does not fully represent scientific understanding of environmental health
risks. A content analysis revealed that although information about prenatal and pediatric environ-
mental health is likely to be encountered by new and expecting mothers, the environmental health
topics covered do not include several issues that are considered “concerning” by the U.S. Environ-
mental Protection Agency (Mello, 2015). Similarly, when U.S. newspapers mention water-related
health risks, they are only short-term, local risks. Given the health burden of waterborne diseases
resulting from aging infrastructure, chorine-tolerant and biofilm-related pathogens, and other fac-
tors (Collier et al., 2021), accurate media coverage is and will continue to be important to public
decision-making about water quality. Media coverage associates longer-term health hazards such as
climate change and drought with people who live in other countries or the global population, which
does not accurately represent the distribution of these risks (Mayeda et al., 2019).
Several studies demonstrate the effect of national political context on media coverage. In both
U.S. and Canadian newspapers, fracking coverage is primarily about water quality. Canadian news
stories focus on economic benefits, fracking moratoriums, and energy independence, whereas U.S.
news stories have a more mixed message with coverage of water pollution, economic benefits,
energy independence, and harm to wildlife (Olive & Delshad, 2017). In contrast, both U.S. and
Canadian newspapers use scientific sources to report on bisphenol A (BPA), but U.S. newspapers are
more likely to cite industry sources. Canadian newspapers emphasize the health threat of BPA sig-
nificantly more than U.S. newspapers (Brewer et al., 2014). Political context also affects news media
coverage of climate change, such that U.S. news media highlight greater uncertainty about climate
change than do U.K. media (Boykoff & Boykoff, 2007).
Media coverage also depends on characteristics of the news outlets themselves. The ideology of
media outlets affects their climate change coverage. Across ten years of newspaper coverage in the
United Kingdom, researchers identified five dominant discourses about climate change. Which dis-
courses dominated in a particular newspaper depended on the ideology of the newspaper, social and
political factors, and key events that drew attention to climate change (Doulton & Brown, 2009). In
the United States, Fox News is more likely to dismiss climate change and interviews a greater ratio
of climate change deniers to believers than does CNN or MSNBC (Feldman et al., 2012). Similarly,
how climate change is covered in the media reflects both regional media systems and cultural percep-
tions of relevance, responsibilities, and regional power related to climate change (Eskjær, 2013). In
a time when media outlets are downsizing and cutting specialty reporting, it is worth nothing that
media outlets with dedicated environmental and/or climate reporters and editors are more likely to
make connections between extreme weather events and climate change (Hopke, 2020).

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Media Framing
Framing theory states that how information is presented, or framed, influences how people pro-
cess the information and what they do with that information (Entman, 1993). Media can frame
information by emphasizing certain perspectives on or facets of an environmental health issue and
de-emphasizing or omitting other perspectives or facets. Communication research has examined
framing of environmental health problems, differences in framing by media outlet or type, interac-
tions between frames and ideology, effects of framing on perceptions and behavior, and how to
counteract the effects of framing.
Framing can affect our understanding of a problem and its solutions. Media coverage about urban
communities often describes them solely in term of their problems (Ettema & Peer, 1996). This
“urban pathology” frame can give readers the sense that urban problems are unfixable and that these
communities have no assets or strengths. In describing the Flint, Michigan, water crisis, the Wall
Street Journal and The New York Times frequently used urban pathology language and rarely cited local
residents as information sources (Carey & Lichtenwalter, 2020). When media sources quoted resi-
dents, the quotations focused on blame and anger rather than community organizing, environmen-
tal justice, or community strengths. The articles on Flint also ignored systemic injustices (Carey &
Lichtenwalter, 2020). Similarly, an analysis of discourse around Beijing’s hazardous smog indicates
that Chinese and international news coverage downplay environmental injustices. The coverage
uses a “leave-it-to-experts” frame, implying that because of the complexity of environmental issues,
government structures using scientific expertise are the only ones who can address the problem.
This framing erases potential roles for citizens to be involved in solutions, de-emphasizes existing
inequalities, and creates a sense of victimhood (Chen, 2018).
Like media coverage, framing can depend on characteristics of the news outlet. During a haze
crisis in Singapore, traditional news media were more likely to provide positive messages about the
government’s efforts to reduce haze and tended to cite governmental sources. In contrast, social
media in Singapore presented negative views about the haze from citizens and were critical of the
government’s response (Lin, 2019). Similarly, mainstream newspaper coverage of gold mining in El
Salvador aligned with state and conservative perspectives focusing on the economic benefits of the
mine and did not include pro-environmental frames until the Catholic Church engaged in oppo-
sition to the mine. In contrast, alternative media provided frames that challenged the economic
benefits of the mine and raised concerns about community rights, citizen health, and environmental
protection (Hopke, 2012).
Framing can interact with ideology but often cannot overcome the influence of ideology. News
media have framed climate change in a variety of ways, including framing it as an issue of public
health, economy, national security, environment, morality, or political conflict. A public health
frame leads to greater likelihood of choosing to read climate change news by liberal Democrats and
moderate Independents. However, conservative Republicans’ selection of news is unaffected by
framing (Feldman & Hart, 2018). Similarly, when exposed to differently framed images of fracking
(environmental risk and economic benefit frames), those who are opposed to fracking are more
likely to express concern for the environment regardless of the image frame they are shown. Unde-
cideds and opponents of fracking are also more likely to express concerns about human health than
are supporters of fracking regardless of the image frame, indicating that image framing is unable to
overcome ideology (Krause & Bucy, 2018).
Framing studies assume, but rarely test, the effects of framing on perceptions and behavior. An
exception is an analysis by Mello and Tan (2016) that connects the effects of media framing, media
consumption, and attributions of responsibility. The study reveals that media sources most frequently
attribute responsibility for childhood environmental chemical exposure to parents. Websites more
heavily emphasize parent responsibility, whereas general news focuses on government agencies’ and

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manufacturers’ responsibility. These frames directly affect mothers’ perceptions of responsibility.

Reading websites is associated with perceived personal responsibility, and scanning general news is
associated with perceived government and manufacturer responsibility (Mello & Tan, 2016).
Interventions can counteract the effects of framing. Several studies have examined how to moder-
ate framing effects through cost-benefit analyses (e.g., Kahneman & Tversky, 1984; Tversky & Kah-
neman, 1981), group discussion (e.g., Druckman & Nelson, 2003), or exposure to alternative frames
(e.g., Druckman, 2004). These interventions tend to require substantial time and effort to moderate
framing effects. An experiment demonstrated that an alternative approach that simply describes
what framing is and highlights the frames in a message moderated or eliminated the framing effect
(Baumer et al., 2017). Although ideology interacted with framing, the highlighting technique did
not increase polarization between opposing ideological viewpoints.

Factors Affecting Public Responses to Environmental and Health Issues

Environmental health communication fits within the larger fields of science communication and risk
communication. A substantial body of research in environmental health communication describes
and identifies factors that affect risk perceptions. Identifying factors that affect public responses to
environmental health issues can assist communication practitioners in designing appropriate mes-
sages and interventions and can help them effectively segment their audiences for different types of
messages. Communication researchers have examined the effects of ideology, risk and benefit per-
ceptions, and social support on public responses to environmental and health issues.

Political Ideology
Communication researchers have conducted surveys and experiments to assess the effects of political
ideology on environmental and health risk perceptions. Most of this research takes place in the con-
text of U.S. political party and ideological divisions. The studies show that ideology affects concern
about risks and support for policies to address risk. Political ideology also interacts with framing,
word choice, and social identity to influence risk perceptions. In addition, ideology affects how
people process messages about environmental and health issues.
Political ideology affects concern for climate change and support for policy measures to address
climate change. As political ideology moves from more liberal to more conservative, concern about
climate change decreases, as does support for measures to address climate change (Asim & Todd,
2010). Political ideology and party identification predict perceptions of scientific consensus, beliefs
about the timing of climate change, belief in humans as a cause of climate change, and perceptions of
the seriousness and threat of climate change (McCright et al., 2014). College education is typically
associated with greater concern for climate change (Lee et al., 2015); however, education interacts
with ideology, such that having a college education does not increase concern about climate change
for conservatives (Asim & Todd, 2010).
Political ideology interacts with framing and word choice. For example, conservatives are more
likely to believe that “climate change” exists than they are to believe that “global warming” exists
(Baumer et al., 2017; Schuldt et al., 2011). Conservatives are also more likely to believe that the
government is less responsible for addressing “global warming” than “climate change” (Baumer
et al., 2017; Hart, 2011).
Political ideology also interacts with social identities. Environmental group affiliation affects envi-
ronmental attitudes, which in turn affects beliefs that fracking has health risks. Political party affiliation
and ideology have direct effects on beliefs about environmental risks, with Republicans and conserva-
tives less likely to believe that fracking poses environmental and health risks. Party affiliation and ideol-
ogy also have indirect effects on risk perceptions through partisan media use (Veenstra et al., 2016).

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Political ideology has a strong influence on how people process information. Motivated reasoning
is the tendency to interpret information in a way that supports pre-existing beliefs (Kunda, 1990).
Motivated reasoning based on political ideology is particularly prevalent in the interpretation of cli-
mate change evidence (e.g., McCright et al., 2014; Zia & Todd, 2010), but it also is prevalent in the
interpretation of other environmental health risks (Veenstra et al., 2016). Therefore, communicators
need to consider the potential effects of ideology and motivated reasoning on messages.

Risk and Benefit Perceptions

Risk and benefit perceptions influence a variety of environmental and health attitudes, beliefs, and
behaviors. Theory-driven surveys have assessed the role of risk and benefit perceptions in predict-
ing responses to environmental health issues. Surveys have also investigated how risk perceptions are
related to media use.
Perceptions of risks and benefits affect how people respond to environmental health issues. Defer-
ence to scientific authority and perceptions of the benefits of genetically engineered (GE) mosquitos
have the greatest influence on support for GE mosquitoes to prevent the spread of Zika (Lull et al.,
2019). Most people in the United States think foods with genetically modified organisms (GMOs)
are risky. Believing GMOs only benefit manufacturers, are unnatural, and cause allergies and illness
are the strongest predictors of GMO food rejection (Rose et al., 2020). Self-efficacy and subjec-
tive norms are the strongest predictors of intention to eat a plant-based diet. The greatest perceived
benefit of a plant-based diet is health and well-being, whereas the strongest barrier is the challenge
of changing current eating habits (Urbanovich & Bevan, 2020).
Media can strongly influence risk perceptions. Non-white rural North Carolina residents’ per-
ceived risks are not associated with their objective risk or demographics. Instead, media use affects
risk perceptions and efficacy beliefs, such that watching local television news is associated with
increased risk perceptions, whereas national TV news and newspaper consumption is associated with
increased self-efficacy. Risk exposure, risk perceptions, and self-efficacy do not predict information
seeking (Watson et al., 2013).

Social Support
Social support can be an important coping resource in response to an environmental hazard. How-
ever, environmental hazards often evolve slowly and have long-term health consequences, which
may require different forms of social support than shorter-term hazards like earthquakes or torna-
does. A qualitative examination of social support needs in Libby, Montana (where a vermiculite mine
contaminated with asbestos created an environmental and health disaster), identified information,
emotional, and instrumental support needs (Cline et al., 2015). Residents of Libby needed informa-
tion to address uncertainties about asbestos-related disease, information about what is known (even
if there are many unknowns), and consistent risk information. Emotional support needs included a
desire to find normalcy and a unique emotional burden from watching family members suffer and
die, knowing one might also go through the same experience. Instrumental support needs included
help maintaining daily activities, assistance with the financial costs of caretaking for someone with
asbestos-related disease, and help managing one’s own asbestos-related disease (Cline et al., 2015).

Environmental Health Literacy

A growing area of environmental health communication is environmental health literacy. Environ-
mental health literacy (EHL) focuses on the knowledge and skills needed to access, understand,
evaluate, and use environmental health information. These skills include understanding how the

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environment affects health and how to manage exposure to environmental health risks (Finn &
O’Fallon, 2017, 2018). Environmental health literacy has close ties to environmental justice because
communities that face environmental health inequities often have low environmental health literacy.
Communication scholars have described the structure and content of EHL interventions, evaluated
the effects of EHL interventions, and assessed information quality that would affect EHL.
Interventions to address EHL require multiple approaches. Simonds et al. (2019) use a three-level
framework derived from Nutbeam’s (2008) health literacy schema to assess complexities around
building environmental health literacy. The three-level framework consists of functional EHL (i.e.,
reading, writing, speaking, and math skills and the ability to apply those skills), interactive EHL
(i.e., capacity to act on information and knowledge), and critical EHL (i.e., collaborative action for
change; Simonds et al., 2019). Water-related environmental health cases on American Indian tribal
lands demonstrate the importance of partnerships and sharing of expertise to enhance understanding
of scientific evidence by community members and to enhance understanding of community culture
and needs by scientists. Hands-on education, training, and participatory research are important to
collaborative skill building. Understanding laws, regulations, and policies related to environmental
health issues is a key need for critical literacy (Simonds et al., 2019).
Environmental health literacy interventions can improve outcomes related to both literacy and
environmental health. An environmental health literacy project used an intergenerational “train the
trainer” approach that trained high school youth to use an interactive map visualizing traffic pollu-
tion in Boston’s Chinatown. The youth then trained older Chinatown residents. The intervention
led to increases in older adult knowledge, efficacy using maps, and positive attitudes toward environ-
mentalism (Wong et al., 2019).
Information quality is an important aspect of advancing environmental health literacy. An analysis
of public information on air pollution indicated poor information quality and poor information
reach (Ramírez et al., 2019). Air pollution information is difficult to understand, vague, and either
too simple (e.g., “poor air quality”) or too technical to be useful. Messages about air pollution lack
information about behaviors to mitigate risk behavior and information about the long-term health
effects of environmental exposures. In addition, the channels used to communicate air pollution
information are unlikely to reach the most vulnerable populations (Ramírez et al., 2019). Design-
ing environmental health messages that are understandable and enhance literacy is a vital role for
communication researchers and practitioners. Message design should be theory-driven and follow
a communication science approach that includes formative, process, and evaluation research (Silk &
Totzkay, 2018).

Persuasion and Message Design

Persuasion and message design is an area of environmental health communication that has received
limited attention. A few studies are identifying and applying the most effective message strategies
(e.g., types of appeals, visuals, channels, sources, etc.) for encouraging engagement with environ-
mental health issues. In addition, researchers have examined predictors of risk information seeking.
Understanding how to affect persuasive outcomes enables communicators to develop messages and
campaigns that effectively encourage attitudes, beliefs, and behaviors that mitigate environmental
health risks.

Message Strategies
Although message design research is a substantial area in health communication, there is relatively
little message design research in environmental health communication. Researchers have investi-
gated how to create clear and culturally appropriate risk messages. In the context of climate change,

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scholars have assessed the effects of message framing and emotional appeals on a variety of persuasive
outcomes (see Chadwick, 2017a).
Environmental health messages need to convey complex interactions between the environment
and health in an understandable and culturally appropriate way. A systematic review of literature on
effective environmental health risk communication strategies with Indigenous populations identified
factors associated with effective risk communication, including vocabulary and language, message
design, and channel factors (Boyd & Furgal, 2019). Vocabulary and language are important to ensur-
ing that risk messages are understandable because there might not be a word or phrase for the hazard
in the Indigenous language (Charley et al., 2004; Furgal et al., 2005). The preferred language for
environmental risk messages may depend on the generation of the message audience. Older genera-
tions may be more fluent in the native language, whereas younger generations may not be as fluent
in the native language, but they may be more fluent in other common languages such as English,
French, or Spanish (Furgal et al., 2005). Other important message features may be literacy level and
visuals. In Bangladesh, banners with simple language and colorful pictures effectively raised aware-
ness across different social strata about the health effects of arsenic poisoning (Hossain et al., 2003).
Communication researchers have also analyzed the effects of message framing and emotional
appeals on persuasive outcomes. Uncertainty and message framing (positive or negative) interact to
affect likelihood of climate protective action (Morton et al., 2011). When high uncertainty mes-
sages are combined with positive frames, participants have stronger intentions to engage in climate
protective behaviors, whereas when high uncertainty messages are combined with negative frames,
intentions to act are significantly lower (Morton et al., 2011). Similarly, research has shown that
gain frames result in more positive attitudes toward climate change mitigation and greater perceived
severity of climate impacts than do loss frames (Spence & Pidgeon, 2010).
Like the research on framing, studies of the effects of emotional appeals show that positive emo-
tional appeals are more effective than negative appeals for environmental health risks. Although fear
appeals have potential for attracting attention (O’Neill & Nicholson-Cole, 2009), they can often
be counterproductive, leading to maladaptive attitudes and behaviors such as denial, derogation of
the message source, selective exposure, and paralysis (Swim et al., 2009). In contrast, hope appeals
show promise for encouraging engagement with climate change (Chadwick, 2015, 2017b; Swim
et al., 2009). Hope appeals increase attention to messages about climate change (Chadwick, 2015)
and increase mitigation behavior and intentions to take mitigative behavior (Chadwick, 2010). In
addition, feelings of hope increase interest in climate change protection (Chadwick, 2015) and
are positively correlated with pro-environmental behaviors and support for climate change policies
(Lorenzoni et al., 2007).

Information Seeking
A substantial body of research in environmental health communication focuses on factors that predict
information seeking about environmental and health risks. Two models are prevalent in this research:
the risk information seeking and processing model (RISP; Griffin et al., 1999) and the planned risk
information seeking model (PRISM; Kahlor, 2010). The RISP model predicts information-seeking
behavior with seven factors: individual characteristics, perceptions of the hazard, affective responses,
social pressure, information sufficiency, capacity to learn, and beliefs about information usefulness
(Griffin et al., 1999). The PRISM model builds off the RISP and the theory of planned behavior
(TPB; Fishbein & Ajzen, 1975). It predicts risk information seeking using the variables of attitudes
toward information seeking, information seeking subjective norms, perceived information seeking
control, risk perceptions, affective responses to the risk (worry and hope), and perceived knowl-
edge sufficiency threshold. PRISM has greater explanatory power than either RISP or TPB alone
(Kahlor, 2010).

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Using the RISP model, researchers determined that uncertainty plays a strong role in infor-
mation-seeking behavior but not in preventative behavior. Perceived threat to future generations,
perceived degree of personal control, and level of trust in the government affect uncertainty about
the risk of eating contaminated fish from the Great Lakes. Worry and anger also predict uncertainty
about the risk. Uncertainty affects perceptions of information insufficiency, which in turn predict
information-seeking behavior (Fung et al., 2018).
Researchers have used the RISP to investigate the role of emotion in risk information seeking.
People who perceive there to be a problem with their water quality feel anxious and hopeless. Anxi-
ety increases information-seeking intentions, whereas hopelessness makes people less likely to seek
information (Hmielowski et al., 2019). In addition, response efficacy moderates the path between
problem perception and hopelessness, such that people with low response efficacy feel more hopeless
as their perception of the problem increases (Hmielowski et al., 2019).
PRISM has also guided research on the role of emotion and other variables in predicting infor-
mation seeking. Except for attitude toward information seeking, all the variables of PRISM directly
or indirectly predict information seeking about the risks and benefits of carbon capture and storage.
Two additions to the model, hope and perceived benefits, both significantly predict information-
seeking intentions (Kahlor et al., 2020). Using both RISP and PRISM, researchers determined that
not having enough information, negative affect, information-seeking attitudes, and self-efficacy for
information gathering are positively related to Chinese people seeking information about air pol-
lution. People with high knowledge and higher risk perceptions are more likely to want more air
pollution information (Yang & Huang, 2019).
As with other behaviors, efficacy plays a strong role in risk information seeking and civic engage-
ment. Risk information seeking about climate change is predicted by having high risk and efficacy
perceptions (Mead et al., 2012). However, low efficacy perceptions can deter information seeking.
Despite most Chinese citizens believing that a new nuclear power plant in their community would
lead to health, safety, and environmental risk, few people were actively engaged with the issue.
Perceptions of efficacy play a strong role in online behaviors of information seeking, discussing
benefits and disadvantages, communicating to decision makers, and mobilizing for collective action.
Participants had low internal efficacy (e.g., believing they did not know much and were simple
people), low external efficacy (e.g., not believing the government would respond to the issue), and
low collective efficacy (e.g., believing there was no collective unity against the government; Qiu
et al., 2018).

Communication by Organizations
Organizations have a key role in communicating about the environment and health. Nongovern-
mental organizations advocate for individual and social changes to decrease environmental and
health risks. Government organizations often have the power to address environmental health risks
and communicate about these risks. Industries that are responsible for risks also contribute to com-
munication about these risks. Finally, health organizations can help connect environmental risks to
health issues.

Nongovernmental Organizations
Nongovernmental organizations (NGOs) face many challenges in communicating about environ-
mental health risks. Organizations must consider their sociopolitical context when choosing their
advocacy goals. Organizations have to make strategic decisions between pushing for substantial
changes to achieve their mission and risking being seen as extreme or pushing for more modest
changes that are acceptable for a wider audience (Laestadius et al., 2016). NGOs tend to promote

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diets with less meat or meat from grass-fed animals rather than promote diets with no meat. Research
suggests that promoting meat-free diets would be against the NGOs’ economic and political interests
(Lerner et al., 2013), be unpopular (Bristow, 2011), or challenge cultural norms (Freeman, 2010).
Fear of alienating supporters or asking too much leads NGOs to focus on small reductions in meat
consumption or a switch to more environmentally friendly meat. Promoting a meat-free diet can
also conflict with other environmental and health goals of the NGOs (e.g., supporting grass-fed meat
production). The views and behavior of NGO staff also influence their messaging choices, such that
staffers who consume meat are less willing to promote meat-free messages (Laestadius et al., 2016).

Governmental Organizations
Government organizations often engage in information dissemination and participatory communi-
cation with the public. These tasks can come in conflict. The Alaska Earthquake Center developed
a community forum that contained scientific information and enabled people to comment about
earthquakes. During times of low seismic activity, the forum served as a way for people to seek
validation of minor earthquakes, find scientific information about a specific earthquake, access gen-
eral information about earthquakes in Alaska, express feelings, receive support, and tell earthquake
stories (Lambert, 2020). The sense of being a member of “earthquake country” built community.
However, during significant earthquakes, posts from community members obscured the vital health
and safety information that the Alaska Earthquake Center was trying to provide to the public.

Industry
The U.S. fossil fuel industry has had a substantial impact on public communication about envi-
ronmental health. Industry actors have engaged in a concerted effort to spread a message of scien-
tific uncertainty about environmental risks, particularly those associated with climate change and
hydraulic fracturing or “fracking” (Hoggan & Littlemore, 2009; Matz & Renfrew, 2015; Oreskes &
Conway, 2010). In particular, industry actors have sophisticatedly manipulated the language used
to describe environmental risks (Hoggan & Littlemore, 2009). An industry public relations cam-
paign about fracking in the Marcellus shale framed fracking as safe and environmentally clean. The
campaign used environmental imagery, claimed the industry was protecting the environment, and
employed appeals to patriotism and economic and social progress. The campaign also used the
authority and imagery of science along with materials and titles to make the information appear to
be based in science and facts (Matz & Renfrew, 2015). A similar pro-fracking campaign emphasized
economic growth, pitted jobs and the economy against the environment, and romanticized regional
identities associated with extractive industries through appeals to pride and patriotic duty (Rich,
2016).
The communication efforts of industry try to delay or stop policies or regulations that would
address environmental health risks. In particular, appeals to the uncertainty of science delay action
by policy makers and the public to address environmental health risks (Oreskes & Conway, 2010).
Communication from industry actors and conservatives encourage non-decision-making by chal-
lenging the legitimacy of environmental health science and policy (McCright & Dunlap, 2010a,
2010b). In addition, industry communication works to discredit those who question or oppose
extractive industries by portraying activists as irrational and obstructionist and scientists as self-inter-
ested elitists (Matz & Renfrew, 2015; Oreskes & Conway, 2010).
Industry communication has evolved over time. In a meta-analysis of 38 studies on how the fossil
fuel industry has communicated about climate change, Schlichting (2013) identified three phases of
industry communication. First, scientific uncertainty dominated industry communication. Next,
industry focused on socioeconomic consequences of emission reductions and regulations. Finally,

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discourse concentrated on industry leadership of climate protection, which is the dominant frame
worldwide today (Schlichting, 2013).

Health Organizations
Health organizations also have a role to play in communicating about the environment and health.
Several researchers have examined roles for public health and healthcare providers in addressing
climate change. Maibach et al. (2008) assessed the preparedness of public health systems to address
climate change, indicating a need for greater activity in the public health sector around climate
change issues. Other researchers have investigated the potential roles of healthcare providers in com-
municating about the effects of climate change on health (Villagran et al., 2010).

Environmental Health and Justice Movements

Concerns about environmental health risks have generated social movements to address these risks.
The environmental health movement focuses on mitigating health effects of exposure to toxic chem-
icals and other hazards in the environment. The environmental justice movement focuses on civil
rights, particularly the inequity of environmental and health burdens on low-income people, Black
people, Indigenous people, and people of color. The climate justice movement attempts to address
global inequities in the distribution of the causes and consequences of climate change.

Environmental Health Movement

The environmental health movement arose in the 1970s in response to concerns about toxic expo-
sures that were harming health. Lois Gibbs, an environmental activist, is often credited with starting
the movement when she organized the Love Canal Homeowners Association to protest the health
effects of a toxic chemical dump under their homes and schools. Advocacy communication in the
environmental health movement often stems from firsthand experiences with health effects from
environmental toxins. For example, Sandra Steingraber, an ecologist and a cancer survivor, uses her
experiences and expertise to describe toxins in our everyday environment and their impact on health
(Steingraber, 2010). Biographical health narratives aided community members in negotiating emis-
sions reductions from a plastics plant in southwest Ohio (Zoller, 2012). These narratives pushed back
against traditional definitions, attributions, and communication about risk, enabling the voices of the
community to be effective in advocating for fewer chemical releases (Zoller, 2012). A critique of the
environmental health movement is that it often focuses on concerns relevant to white, middle-class
people. The environmental justice movement addresses this critique.

Environmental Justice
Black people, Indigenous people, people of color, and people with low socioeconomic status dis-
proportionally face environmental and health hazards (US General Accounting Office, 1983). With
roots in the U.S. civil rights movement, the environmental justice movement grew out of protests
against toxic contamination. Communication research about environmental justice typically consists
of qualitative or rhetorical case studies about the design and function of advocacy campaigns.
Case studies in environmental justice often describe community and academic partnerships to
address environmental justice issues. A four-year multistate, community-based project between aca-
demics and Indigenous communities attempted to address research inequities and environmental
injustices in risk management (Quigley et al., 2000). The goal of the project was to build capacity for
Indigenous communities to manage health risks from nuclear contamination. Providing resources

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(e.g., sharing funding, research, training), having community control and shared leadership, creat-
ing a positive experience with research, engaging in two-way communication, and co-developing a
hazard management plan built Native community environmental health infrastructure and increased
community capacity to address environmental health issues (Quigley et al., 2000).
Environmental justice campaigns and organizations often face challenges because they disrupt
norms and need to create collaborations across differences. The Women’s Voice for the Earth (WVE)
advocacy organization had to work across difference and challenge norms in their advocacy against
environmental and health risks from cleaning products, hair and nail salons, feminine care products,
and fragrances (Zoller, 2016). WVE has strong female leadership, which challenges the norm of
male understanding of chemical and environmental issues. The organization appealed to common
experiences of women as both workers and consumers exposed to toxics, which enabled them to
bridge class differences. WVE focused on intersectionality in environmental health to help bridge
race, class, and gender differences and appealed to the collective identity of women and minorities
as people whose health, risks, and voices are often overlooked. Together these approaches enabled
collaborative work across differences on an advocacy campaign and the development of broader alli-
ances with other health and environmental groups (Zoller, 2016).

Climate Justice
The climate justice movement takes a human rights approach to the impacts of and solutions to cli-
mate change. The effects of climate change will be disproportionally borne by developing counties,
island nations, women, and youth. Currently, most of the research on the climate justice movement
exists in sociology and political science journals. An exception is an examination of Australian media
coverage of climate justice and a participatory process in which representatives from small island
developing states (SIDS) identified preferred media themes (Dreher & Voyer, 2015). Overall, there
has been relatively little application of public participation theory to the climate justice movement.
This area presents an opportunity for more research to understand how citizens engage with climate
change and justice.

Future Directions
Although the related fields of environmental health, risk communication, and health communica-
tion are well-established, environmental health communication is relatively nascent. To thrive, the
field needs to increase the diversity of scholars and contexts represented in the literature; rely more
heavily on theory to drive scholarship and practice; and center issues of race, class, and country in
theory, research, and practice. In addition, media effects, climate change, and persuasion present
opportunities for growth.
Environmental health communication needs to increase the diversity of scholars and contexts
represented. Scholars in the United States, United Kingdom, Australia, and Canada conduct most
of the environmental health research published in communication journals. Consequently, most of
the environmental health communication literature studies these countries. As we have seen in the
field of health communication, theory, research, and practice can benefit from a diversity of scholars
studying varied contexts (see Chapter 35, this volume).
A greater reliance on theory to guide research and practice is vital to a thriving field of environ-
mental health communication. Group, organizational, political, and societal level communication
theories could inform the study of organizational communication, effects of media content and cov-
erage, academic-community partnerships to address environmental health literacy and environmen-
tal justice, social movements, and more. Scholars may need to modify existing theories or develop
new theories to adequately explain and predict aspects of environmental health communication.

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Inequities related to race, class, and country should be central in the examination of all environ-
mental health issues. Given the disproportionate burdens of environmental and health risks, all areas
of environmental health communication, not just research and practice related to environmental and
climate justice, should address issues of race, class, and country. Academic-community partnerships
are particularly useful for understanding and mitigating inequities.
Although descriptive studies of media coverage and framing are important, environmental health
communication researchers should also connect media coverage with outcomes. Media coverage
and framing likely affect understanding, attitudes, beliefs, and behavior for individuals, organizations,
and governments. At present most media studies assume rather than test the effects of coverage and
framing.
Climate change has clear effects on health. As countries and communities make changes in trans-
portation systems, land use, energy production, food and product consumption, and other areas,
scholars and practitioners will have an opportunity to be involved in and study community, national,
and international negotiations, decision-making, public communication, and policy support. There
will also be opportunities to help develop and evaluate climate solutions that protect health. Climate
change communication also presents a fruitful area for media and persuasion studies.
Compared to health communication, environmental health communication has a limited examina-
tion of persuasion and message design. Although some theory and research from health communica-
tion may apply to environmental health contexts, much of it may not. Unlike many health issues, the
causes of and solutions to environmental health risks often are outside an individual’s control. There is,
thus, an opportunity for environmental health communication to identify the most effective strategies
for influencing attitudes, beliefs, and behaviors of individuals, organizations, and governments.

Note
1. The New York Times, the Washington Post, the Atlanta Journal Constitution, the Houston Chronicle, and the
Tampa Tribune.

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 SECTION VIII

Challenges and Challenging

Contexts in Health Communication
Research and Practice
 34
ETHICAL ISSUES IN HEALTH
COMMUNICATION IN CLINICAL
AND DIGITAL SETTINGS AND
IN HEALTH COMMUNICATION
CAMPAIGNS
Nurit Guttman, Eimi Lev, and Maram Khazen

Communicating about health inherently raises ethical issues because it concerns people’s private
lives and what they should know or do in order to avoid health-related risks or adopt health-related
practices. The main purpose of this chapter is to present ethical issues as they emerge in health com-
munication in various settings. The first section provides an overview of several ethical approaches
and guiding precepts that can direct our thinking on ethical issues in health communication. The
second presents several ethical issues in clinical settings. Because health communication increasingly
takes place through the Internet and digital information technologies, the third section concentrates
on ethical issues associated with health communication in digital and social media contexts. The
fourth section focuses on ethics in health communication campaigns and social marketing. The
chapter concludes by underscoring the importance of identifying and attending to ethical issues in
various health communication contexts and noting implications for advocacy.

Ethical Approaches and Guiding Precepts

The consideration of ethical issues in health communication can be informed by international dec-
larations of human rights. In particular, the United Nation’s Universal Declaration of Human Rights
provides a basis to argue that pro-health interventions must promote autonomy and equity (Gordon
et al., 2016). Discussions regarding ethics in healthcare are often guided by ethical obligations as
articulated by bioethicists, most notably Beauchamp and Childress (2009), drawing on a principlist
approach. These principles refer to fundamental ethical obligations, beginning with the obligation
to avoid doing harm, whether physical, psychological, or social, and the basic tenet of the helping
professions to “do good” (beneficence). By implication, communicating about health should aim to
help people promote their health and avoid health-related risks, but it is also imperative to consider
how this communication could cause unintended harm (e.g., raising anxieties or stigmatizing).
Another central obligation is respect for autonomy, based on the premise that people have an intrin-
sic right to exercise their free will to make decisions for themselves on matters that affect them, so
far as such decisions do not harm others. This obligation is rooted in a liberal Western tradition and
democratic theory that places high importance on individual choice in political life and personal
development. It is also the basis for the obligation to respect people’s privacy and is the foundation

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for medical care codes such as patients’ rights, informed consent, and confidentiality rules. Respect-
ing autonomy is also the basis for the obligation to be truthful and to refrain from deceptive or
manipulative persuasive tactics when communicating about health. However, the prominent empha-
sis on autonomy has also been criticized as based on Western assumptions of individualism and as
not reflecting cultural diversity in moral reasoning (Carrese & Rhodes, 1995). Different conceptions
of autonomy or fairness can be found in collectivist cultures (Cortese, 1990), according to which
people are interdependent, a person is a person through others, and one’s well-being is connected
with one’s family and community (Metz, 2010). An emphasis on connectedness and caring can also
be found in the ethics of care in feminist literature (Tong, 1998) and in the communitarian approach,
which stress a sense of common purpose and tradition and prioritize values such as generosity, com-
passion, solidarity, sympathy, and reciprocity (Bouman & Brown, 2010). Therefore, messages that
mainly focus on personal autonomy could be perceived as inappropriate in cultures that emphasize
communal obligations.
An additional central precept refers to equity and the obligations to promote a just and fair dis-
tribution of resources, access, opportunities, benefits, and risks within and across populations. This
principle includes the obligation to provide for those who are disadvantaged, vulnerable, marginal-
ized, or have special needs. A contentious issue associated with equity is the debate regarding moral
relativism versus the obligation to adhere to universal principles. For example, should one respect
cultural values regarding gender-role norms when communicating about health-related issues and
consequently avoid using messages or images that challenge these norms? That is, when targeting
members of societies with traditional gender roles, should health communicators disseminate mate-
rials that refrain from gender equity and depict only women practicing behaviors associated with
traditional female gender roles (e.g., cooking or childcare) and show only men in roles associated
with male gender roles? Another guiding precept is associated with utility and effectiveness, accord-
ing to which the approach should be chosen to maximize the greatest benefit to the largest number
of people, especially when resources are limited. For example, should one choose a specific digital
platform to disseminate health information because of its popularity, although it is not accessible to
certain groups?
The communication ethics literature presents guiding ethical precepts associated with respect for
autonomy that specify communicators’ obligations to truthfulness, correctness, reliability, sincerity,
and comprehensibility of the information provided. They also add the obligation to include relevant
individuals and groups in the process of developing and disseminating information aimed to influ-
ence and persuade them (Johannesen et al., 2008), which can be associated with both autonomy
and equity. Similar precepts can be found in the advertising literature, as may be seen in a frame-
work called TARES, which underscores obligations to truthfulness of the message, authenticity of the
persuader, respect for the people whom one intends to persuade, equity of the persuasive appeal, and
social responsibility for the common good (Baker & Martinson, 2001). The literature on ethics in
social marketing adds the obligations not to model inappropriate or undesirable behavior, not to be
offensive, and to avoid stereotyping (Donovan & Henley, 2010; Smith, 2001). These precepts and
obligations can help health communicators identify ethical concerns when communicating in clini-
cal settings or digital platforms and when developing persuasive appeals for the purpose of informa-
tion campaigns.

Clinical Settings
Communication between healthcare providers and patients in clinical settings elicits a host of ethical
issues. This section focuses on dilemmas regarding truth telling and conveying uncertainty in diag-
nosis, communication about sensitive issues (see also Chapter 13, this volume), crossing boundaries
of professional roles, and whistleblowing.

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Truth Telling and Communicating About Diagnostic Uncertainty

Being truthful as a central moral tenet in communication ethics is associated with the obligation
to respect people’s autonomy and to provide people with information that is as truthful as possible
(Johannesen et al., 2008). However, the obligation to be truthful raises ethical dilemmas in the
healthcare context, for example, when healthcare providers do not feel it is morally right to provide
patients with complete information. One such dilemma is whether to disclose costly treatment
options that are not covered by the patient’s insurance in order to protect the feelings of those with
limited income who might possibly feel shame or frustration from not being able to afford these
treatments (Iezzoni et al., 2012; Marcus, 2007). Another dilemma concerns disclosing an unfavora-
ble diagnosis. Contemporary “patient rights” bills emphasize individuals’ right to know their diag-
nosis and prognosis, in contrast to the past when physicians decided what to disclose. Concealing
or misrepresenting what is known about a diagnosis, even when healthcare providers believe this is
for a good cause (e.g., not wanting to upset patients), infringes on respecting their autonomy. Yet,
critics propose that the preoccupation with patients’ autonomy indicates a cultural bias of Western
medicine and contradicts the values of certain patients and their families (Blackhall et al., 1995). For
example, some people do not want to hear a negative prognosis, and in some cultures it is not cus-
tomary to disclose a negative prognosis to elderly members of the family. Consequently, in certain
situations healthcare providers face the dilemma of whether it is their moral obligation to disclose the
prognosis to their patients or to respect their families’ preference not to (Rising, 2017).
A related dilemma is how to communicate to patients about an uncertain diagnosis. Uncertainty
is an integral part of illness. Diagnostic uncertainty can result from undeveloped symptoms or insuf-
ficient information about the progression of the illness. However, disclosing diagnostic uncertainty
could distress and overwhelm patients coming to seek reassurance that the condition is not serious
(for example, a persistent headache). Healthcare providers need to decide how to communicate
and acknowledge diagnostic uncertainty without risking harm to the patient by creating anxiety
(Heritage & McArthur, 2019). A related concern is that some patients might be inclined to request
various diagnostic tests to reduce the uncertainty, and such tests could be costly, invasive, or produce
worrisome “false positive” responses. To address such dilemmas, it is recommended that healthcare
providers receive training and tools to discuss diagnostic uncertainty with their patients (Stacey
et al., 2017).

Communication About Sensitive Topics

Discussions about health issues necessarily raise sensitive topics because they refer to people’s bodies
and private and intimate practices. Some topics (e.g., mental illness, domestic and intimate part-
ner violence, death) are considered highly sensitive or even taboo and difficult to discuss (Ferdous
et al., 2018). Providers face the dilemma of how to engage in discussions about such sensitive topics
with members of diverse populations when they believe discussing them is part of their obligation
to promote the welfare of their patients. Yet, if they attempt to do so, this could result in causing
discomfort or even resistance on the part of their patients. One example is initiating discussions
on preferences for end-of-life medical treatments (see Chapter 9, this volume). Due to the use of
invasive medical technologies that prolong life but do not necessarily enhance its quality, patients
are accorded the right to express their preferences about the use of such technologies in end-of-life
situations. As people might be unable to voice their preferences when the actual decision needs to
be made, their autonomous decision needs to be established in advance by completing an “advance
directive” or naming a proxy. Because this topic is considered difficult to discuss, it is infrequently
raised in medical encounters. Consequently, many patients in end-of-life situations are deprived of
the opportunity to realize their preferences. This poses a dilemma to healthcare providers: if, when,

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and how to raise the issue of preferences for end-of-life treatments, even if people want to avoid
thinking and talking about death-related issues (Olson et al., 2020).
Another sensitive issue related to end of life is communicating with families regarding organ
donations from the deceased. Organ transplantation can substantially benefit individuals with
serious medical conditions and can literally save lives, but across nations fewer organs are avail-
able for transplantations than the patients who need them. In order to maximize the availability
of organs for transplantation, it is customary that trained medical staff approach close family
members of the recently deceased and ask them if they would agree to donate the organs of
the deceased and convey to them the urgency of this difficult decision. This request is typically
made when the loss is relatively sudden and families are grieving, and therefore it raises ethi-
cal concerns. First, some families welcome the organ donation request because it corresponds
to their values or to the wishes of the deceased; others would feel it adds to their distress or is
disrespectful of their beliefs (Siminoff et al., 2011). Further, in order to help other patients, the
staff is trained to employ persuasive communication to encourage families to agree to the dona-
tion, and a persuasive approach raises ethical concerns. Staff training needs to include attending
to ethical concerns associated with discussing organ donation with grieving families from diverse
backgrounds.
Sensitivities regarding health-related topics vary across individuals, age groups, and cultures, each
raising ethical concerns. For example, talking about issues related to sexuality could be difficult for
many people, especially for individuals living in traditional cultures, adolescents, the elderly, or indi-
viduals who are gay, lesbian, bisexual, or transgender. Some of these individuals would find talking
about sexuality offensive or an invasion of their privacy. This is illustrated in a study that found that
in a traditional culture some unmarried women avoid consulting their doctors about urinary tract
infections (which can be associated with sexuality) because they fear they will be judged as immoral
(Khazen & Guttman, 2021). Studies find similar hesitation among transgender populations because
healthcare providers may not know how to address trans issues, such as checking with trans patients
about preferences to be treated as a male or a female or how they want to talk about their body
(Vincent, 2020). Meanwhile, providers face the dilemma of how to encourage individuals belonging
to diverse groups to talk about sensitive topics while respecting their privacy and how to manage
the challenge of overcoming cultural taboos that associate the topics with fear or shame (Alexander
et al., 2020).

Boundary Crossing in Clinical Settings

The imbalance in relationships in clinical settings is strongly tilted toward the healthcare provider
due to their professional expertise. It is also perpetuated by the organizational structure of healthcare
facilities and the legal or administrative authority accorded to practitioners as gatekeepers of medi-
cal treatments and medications. Yet, practitioners find themselves in situations that blur professional
boundaries when communicating with patients and therefore elicit ethical dilemmas. Choosing to
express empathy to patients by self-disclosing their own personal health experiences would be one
such example (Arroll & Allen, 2015). Thus, professionals can face dilemmas about whether their
communication with their patients should be guided by professional norms or by their personal
beliefs about how they can help their patients.
Blurring personal and professional boundaries can also be found in community settings in socie-
ties with a collectivist orientation that prioritize connectedness and values of loyalty to other mem-
bers. Practitioners who are part of this society and have personal ties with their patients/clients
report that they feel the pressure of conflicting obligations (professional versus connectedness) to
accede to their customers’ requests for medications and treatments (e.g., the provision by commu-
nity pharmacists of antibiotics without a prescription; Khazen, 2019). To address ethical dilemmas

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associated with professional boundaries, scholars recommend that practitioners be provided with
training and tools (Chen et al., 2018).

Whistleblowing
Invariably, unsafe, unethical, or illegal acts take place in healthcare organizations (Gagnon & Per-
ron, 2020). Although professional ethical standards typically require that such practices be reported,
healthcare providers face the dilemma of whether to report them: They do not want to betray the
trust of their colleagues or fear negative consequences to themselves. Hence, even when health-
care professionals believe it is their moral duty to expose misconduct in their workplace, many
refrain from communicating about it. But many also believe it is important to expose misconduct.
Such reporting on misconduct in organizational settings is referred to as “whistleblowing.” Whistle-
blowing requires moral courage and strength to do the right thing because whistleblowers may be
victimized or portrayed as troublemakers; indeed, they face considerable stress in such situations
(Mannion & Davies, 2015). Recommendations to encourage the reporting of misconduct include
providing support and protection to those who do report about the misconduct of someone in a
higher position, offering support to the healthcare provider under investigation, and emphasizing
the positive outcomes of such reporting to patients and organizations (Gagnon & Perron, 2020).

Ethical Issues in Health Communication in Digital Media and Social

Media Platforms
The Internet and digital communication platforms increasingly serve as a central and significant
resource for health information (Millar et al., 2020), and they have become an integral part of
healthcare practice and delivery (referred to as eHealth; for a review see Chapter 26, this volume).
These platforms include information “search engines” that can help reach vast sources of health-
related information; telemedicine, which enables remote communication between providers and
patients; a proliferation of health-related smartphone applications that encompass various purposes
(e.g., illness monitoring, offering motivational support; Tokgöz et al., 2019); and digital social media,
which can serve a wide range of health-related functions (e.g., peer support; Partridge et al., 2018).
These technologies offer opportunities to enhance communication between providers and patients,
increase the effectiveness of healthcare service delivery, and personalize health-promoting messages.
They also raise a wide range of ethical concerns. The following section focuses on concerns related
to equity, autonomy and privacy, and healthcare quality and potential harm.

Equity Concerns
A prominent concern regarding the health-related opportunities afforded by digital technologies is
digital inequality, which is primarily associated with access to various digital platforms and digital
literacy skills (see Chapter 29, this volume, for a discussion of health equity and the digital divide).
The Internet contributes to health inequities because even in high-income countries certain popula-
tions (e.g., people living in rural areas, the elderly, linguistic and cultural minorities, disadvantaged
or marginalized populations) suffer from “digital exclusion” by not being able to utilize the Internet
and digital information and healthcare-related resources due to myriad technological, economic,
cognitive, language, social, and cultural issues (Hargittai & Hsieh, 2013; Watts, 2020). The oppor-
tunities afforded by these technologies (e.g., obtaining relevant health information, communicating
remotely with healthcare experts, customized resources on how to stay healthy or manage dis-
eases), which can help assist in making informed healthcare decisions (Kreps, 2020), are less available
to them. In addition, biases that privilege those with certain sociocultural backgrounds could be

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incorporated in the development of the technology, and these biases are unlikely to be transparent
(Terrasse et al., 2019).
The increasing use of telemedicine exemplifies how the use of digital technologies exacerbates
concerns regarding health communication and inequity. Telemedicine has become a prominent phe-
nomenon in healthcare, and recent pandemics such as H1N1 and COVID-19 served to accelerate
this trend. Healthcare organizations responded to social distancing requirements by increasing and
encouraging use of telehealth services (Olayiwola et al., 2020). Telemedicine has the potential to
increase remote access to general and specialized healthcare services to people living in remote geo-
graphical areas, and it can offer greater flexibility in scheduling appointments, save travel time, and
reduce costs (Kruse et al., 2018). However, it also raises concerns regarding equity. It is less accessible
to populations with limited Internet connectivity and linguistic and digital literacy (Kaplan, 2020).
In addition, it limits face-to-face interaction, which could be particularly important for members of
diverse cultural groups for whom such a connectedness is important to maintain trust and enable the
communication of their concerns. To address equity concerns it is important to ensure that technol-
ogies used to communicate with patients respect their needs, do not exclude those who feel uncom-
fortable using them (Skär & Söderberg, 2018), and that alternative means to communicate with the
healthcare system are provided for those who are reluctant to use them (Terrasse et al., 2019).
The use of health-related smartphone applications (apps) similarly raises concerns regarding
equity. Apps have proven benefits (e.g., related to nutrition, physical activity, medication manage-
ment, coping skills) but are less available to people without easy access to the expensive technology
needed to use them (see Chapter 25, this volume, on social media-based interventions). Apart from
the costs of the smartphones themselves, many of the apps are not free of charge, are unavailable for
fair and equal usage (Tokgöz et al., 2019), and have content less suitable to the sociocultural needs of
marginalized populations (Denecke et al., 2015). Researchers propose that to address health-related
inequities associated with digital information technologies, their design should not require that
potential users have specialized knowledge or skills to benefit from them. If certain skills are needed,
those persons needing them should be provided with training and assistance or alternative venues
such as printed materials or phone helplines.

Autonomy and Privacy Concerns

The use of digital platforms in health communication raises ethical issues regarding the extent to
which such use infringes on people’s ability to make health-related autonomous, informed choices
and threatens their privacy. This is true across platforms. For example, a central tenet in health-
care provision is that patients be given the opportunity for informed consent. Using telemedicine
technologies can jeopardize this because the digital platform is likely to limit certain nonverbal
signals that could convey their hesitancy or some patients might feel less comfortable expressing
themselves through the technology. Consequently, important patient concerns could go unnoticed
or their values could be misunderstood, thus impairing the process of informed consent. Scholars
add that communication through telemedicine channels raises ethical concerns regarding differ-
ences in the decision-making process when the communication between patients and healthcare
providers is conducted at a distance. They propose that the clinical encounter enables the develop-
ment of relationships, which allow healthcare providers and patients to partner in medical deci-
sion-making that involves moral considerations. This occurs through dialogue, body language, and
touch. In this process, providers can learn about the patient’s personal values, concerns, anxieties,
and preferences (Cheshire, 2017). Researchers cite the philosopher Lévinas (2005), who proposes
that a human meeting is necessary to elicit ethical aspects such as respect, responsibility, and trust.
These are considered to be critical for making moral decisions in healthcare. Since provider-patient
face-to-face interactions are more limited in telehealth, this could affect the process of informed

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consent and decision-making (Skär & Söderberg, 2018). Researchers are also concerned that with
the increasingly complex information structures involved in eHealth or telemedicine, patients could
find it more difficult to make informed decisions. Ethical issues are also associated with teleconsulta-
tions conducted in crowded spaces with limited options for privacy. This raises concerns regarding
infringement on autonomy, in that patients have to resort to using a less preferable communication
channel with their healthcare providers because of administrative or economic considerations. These
concerns are also associated with equity because lack of privacy when using teleconsultations is more
likely to happen with individuals from vulnerable populations whose access to private surroundings
is more limited (Kruse et al., 2018).
Privacy is a central issue in the use of digital platforms for health communication-related pur-
poses. One important issue is that these platforms (e.g., websites, applications) obtain users’ consent
to monitor their activities and collect and utilize their personal information. Although users are
often asked to agree to these privacy policies, some of which are mandated by law, these policies
are generally difficult for most users to comprehend. This raises ethical concerns regarding both
autonomy and privacy because individuals are likely to be unaware of the way organizations or
companies gather, use, or sell data for purposes related or unrelated to healthcare (Kaplan, 2020).
Further, there is a risk that despite companies’ declarations, personal health data could be exposed
to other individuals or third parties that provide services such as advertising (Parker et al., 2019).
To address these concerns, potential users need to receive clear and relevant information about the
process, possible alternatives, and any risks to their personal data when they use digital platforms
for health-related purposes (Stanberry, 2001). This information should be adapted to meet various
cultural and linguistic differences (Skär & Söderberg, 2018).
Concerns regarding autonomy and privacy are also central in social media platforms because
many individuals share health-related information on these platforms (Denecke et al., 2015). This is
encouraged by the very design of the social media platform (e.g., Facebook), which is intended to
motivate users to disclose and share personal information and content. Although users often believe
that the privacy of the information they share is protected within the groups, rules guiding the
online activity of presumably closed groups cannot guarantee that personal or health information
disclosed within an online group will not be shared outside of it (Miller et al., 2016). Healthcare
providers may also infringe on patients’ privacy even when they describe anonymous medical cases
online on social media platforms because if enough details are shared, even though anonymized,
patients could identify themselves or others (Terrasse et al., 2019).

Healthcare Quality and Potential Harm Concerns

The increasing use of digital health-related technologies in patient-provider communication, accel-
erated as a result of the COVID19 pandemic (Watts, 2020), raises concerns regarding missing out
on relevant signals, which can reduce the quality of healthcare delivery (Cheshire, 2017) and erode
healthcare providers’ therapeutic relationships with patients (Terrasse et al., 2019). A related con-
cern is that greater use of digital applications in healthcare service delivery means less human social
interaction, which can contribute to the social isolation of patients, especially the more vulnerable
(Denecke et al., 2015).
Concerns regarding quality and accuracy also are associated with the widespread availability
of health information from a variety of online sources. Internet users often have limited skills to
detect the poor quality of online sources and content, which puts them at risk for using incor-
rect or incomplete information (Linn et al., 2020). Further, the Internet, including popular social
media, is a fertile ground for health-related online disinformation (Smaldone et al., 2020) or “fake
news” disseminated by individuals or groups who spread false facts or statements (Klein & Wuel-
ler, 2017; see also Chapter 22, this volume). This can be exacerbated by social media platforms’

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methods that automatically recommend content similar to users’ presumed interests in order to
promote engagement that serves the commercial goals of their paying advertisers. Such recom-
mendations can result in giving disproportionate visibility to anti-health claims (Terrasse et al.,
2019). Exposure to inaccurate or incomplete information, or to misinformation and disinforma-
tion, which present biased or distorted facts, can cause negative outcomes, including distress,
incorrect self-treatment (Tan & Goonawardene, 2017), vaccination avoidance, or non-adoption
of mitigating practices (e.g., not wearing protective facemasks during a pandemic). To address
the challenge of potentially harmful health-related information disseminated in digital channels,
scholars recommend helping people to develop eHealth literacy skills that can enable them to
critically evaluate online health information and make appropriate health decisions (Quinn et al.,
2017; see also Chapter 28, this volume).

Ethics in Information Campaigns and Social Marketing

Health communication campaigns are persuasive communicative initiatives that aim to influence
people’s health-related choices and behaviors (see Chapter 23, this volume). As such, they elicit
ethical concerns associated with infringing on people’s autonomy and equity. Further, by employing
social marketing approaches that draw on commercial marketing strategies, which include targeting
specific segments of the intended populations and identifying costs, barriers, and benefits associ-
ated with adopting the health-related practice, these strategies also prompt ethical concerns (Lee &
Kotler, 2015). Attending to ethical concerns in health campaigns also has utilitarian implications
because messages scrutinized for ethical concerns are more consistent with people’s values, less likely
to be rejected as offensive, and more likely to have a long-term impact (ten Have et al., 2011). The
sections that follow illustrate how ethical issues can be found in different facets and approaches of
health communication campaigns.

Choice of Topics and Segmentation

The very choice of the health topic is fraught with ethical concerns because it could serve to
moralize practices associated with the particular topic. For example, regular physical activity can
be associated with virtue and good character, and not engaging in exercise can be characterized as
being lazy (this is further elaborated in the later section on appeals to responsibility). Topic choice
also raises concerns regarding equity because certain topics are more relevant or beneficial to cer-
tain groups. For example, choosing to focus on promoting physical activity could be more benefi-
cial to individuals who have the means and time to engage in physical activity (e.g., have safe and
lit paths or exercise facilities). Ethical concerns also emerge regarding selecting groups with specific
characteristics as the campaign’s intended population (referred to as segmentation). This approach
is based on the assumption that being attuned to specific groups’ cultural values and norms is
more effective than targeting the larger population. Adopting this utility-based (cost-effectiveness)
rationale, which involves choosing to target the segments most likely to adopt the recommended
practice (e.g., smokers planning to quit smoking rather than all smokers), raises concerns regarding
equity (other groups are less likely to benefit from the campaign). A related concern is when the
campaign aims to target those least likely to adopt the recommendations (e.g., low-income heavy
smokers who do not intend to quit smoking). Although that decision is based on considerations of
helping those most in need, it raises concerns regarding spending public resources inefficiently. Lee
and Kotler (2015) propose that one way to address the segmentation dilemma is to have a long-
range plan to reach groups not included in the first stages of the communication/social marketing
initiative.

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Labeling and Stigmatizing

The strategy of targeting certain groups also raises concerns regarding stereotyping and stigmatiz-
ing when the health issue is associated with a negative stereotype or a behavior considered mor-
ally unacceptable (see also Chapter 6, this volume). One example is a study of fathers who smoke,
who reported having internalized a negative image of themselves as parents (Greaves et al., 2010).
Although stigmatization raises ethical concerns, some argue it can be an effective and morally justi-
fied approach by “de-normalizing” unhealthy/risky practices (e.g., depicting smoking as “deviant
behavior” or shaming drunk driving). Opponents contend that not only is it immoral to purposely
stigmatize people but from a utilitarian perspective it is likely to be ineffective. First, those whose
behavior is stigmatized will reject the message (Bayer & Fairchild, 2016; Thompson & Kumar,
2011). Second, stigmatizing messages do not address the conditions that contribute to the health/
risk problem (Puhl et al., 2013). For example, men who consume alcoholic beverages and do not
refrain from driving do so because their culture encourages heavy drinking among “buddies” when
they go out. This is reinforced by the alcohol industry’s advertising. Thus, stigmatizing messages of
men who drink and drive that do not address sociocultural and economic factors are unlikely to be
effective.

Risk Messages, “Fear Appeals,” and Provocation Tactics

Disseminating information about a health hazard (e.g., from smoking, lack of physical activity, a
pandemic) involves the moral obligations to inform people about its risks in order to ensure they
understand its gravity and to motivate them to adopt protective measures. The obligation to convey
the gravity of the risk involves ethical concerns associated with autonomy and avoiding doing harm.
One dilemma is how to get people to take seriously or to fear potential dire outcomes of a health-
related hazard without being manipulative, which can occur when the appeal emphasizes emotional
arousal. There is an ongoing debate about the ethics and effectiveness of using communication
tactics that aim to evoke strong negative emotional responses (e.g., anxiety, horror, distress, disgust)
to meet these obligations. Proponents argue it is essential to use strong threats or negative emotional
appeals to motivate those at risk to change their behavior (Bayer & Fairchild, 2016). Critics contend
that although such tactics gain attention and are memorable, they have a limited long-term impact.
Additionally, many people react by dismissing the threatening message, arguing that the threatened
outcome will not happen to them (Ruiter et al., 2003). Such threatening risk messages can also
have negative unintended outcomes when people exposed to them, especially vulnerable popula-
tions, experience anxiety and distress, a sense of helplessness, or even fatalism (Hastings et al., 2004).
However, there are different approaches for presenting risks, though they might be referred to under
the general term of “fear appeals.” Thus, alternative approaches can be used to explain damage to the
lungs from smoking. For example, one approach utilizes graphic images of diseased lungs, whereas
another utilizes abstract illustrations that show potential damage, as well as the fact that the lungs can
undergo a repair process when one quits smoking. As information about the risk is likely to distress
people, scholars contend it is ethically imperative that risk messages avoid exaggerations; further-
more, such messages should include elements on how to successfully cope with the threat and should
strengthen intended populations’ conceptions of self- or collective efficacy (Stolow et al., 2020).
As indicated by its name, provocation tactics are also employed to elicit strong negative emotional
responses. Justifications for using such tactics include raising an issue that does not get sufficient
attention in the public agenda, forcefully presenting an alternative point of view on an issue, or gain-
ing attention in a “saturated” media environment (Vezina & Paul, 1997). For this purpose, campaigns
use graphic images or language considered obscene or offensive in order to shock or create a sense

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of outrage by challenging people’s moral sense or social norms and taboos. By definition, provoca-
tive messages raise ethical concerns because they endeavor to make people feel uncomfortable (e.g.,
by using images that elicit disgust or graphic images of death). Further, people could respond to
provocation with anger, retreat, guilt, and despondency rather than feeling empowered to adopt pro-
health practices (Lupton, 2015). Another concern is that the strong emotional impression created by
provocation could overshadow a more in-depth discourse about social norms and values and what
is needed to create a meaningful change to promote the health practice (Brown et al., 2010). Thus,
using risk messages, fear appeals, or provocative tactics needs to be carefully scrutinized because
doing so can infringe on people’s autonomy (e.g., be emotionally manipulative), equity (e.g., mainly
scaring the vulnerable), and utility (e.g., having only short-term effectiveness) and cause harm (e.g.,
be offensive, raising anxiety).

Narratives and Entertainment Strategies

Some campaigns employ entertaining narratives (e.g., stories, drama, comedy) to influence people’s
pro-health beliefs and practices. The success of such a strategy is largely based on people’s enjoy-
ment and the ability of narratives to captivate their interest by drawing them into the storyline
(Singhal et al., 2004). This approach can get people to think about a health-related issue about
which they were not inclined to think (e.g., cancer, sexuality, mental health, family planning, and
domestic violence) and present them with a different perspective about it (Moyer-Guse, 2008).
For example, it could get them to consider that it is one’s responsibility to try to stop a friend from
drinking and driving. As this approach is based on eliciting emotional involvement, it raises ethical
concerns about being manipulative. Proponents maintain that narratives could elicit moral thinking
by depicting various characters, perspectives, and dilemmas true to the lives of the intended popula-
tion and could enhance self-efficacy by depicting positive role models. The production of narratives
as a strategic communication approach requires careful consideration of ethical concerns, including
providing misleading information (e.g., when depicting medical conditions or treatments) and use
of stereotypes (Asbeek et al., 2015). Scholars recommend employing a participative approach when
developing the narratives to help ensure that their content reflects issues that are relevant to the
intended population, which can help address autonomy and equity concerns (for an elaboration of
ethical concerns in health-communication entertainment approaches see Bouman & Brown, 2010).

Appeals to Responsibility
Appeals to personal responsibility are often used as a means to encourage people to adopt health-
promoting and risk-mitigating practices. A common message emphasizes that people should take the
responsibility for their own health (e.g., eat healthier foods, have an early-detection test). This can
contribute to one’s sense of autonomy and corresponds to the notion of “agency,” or people’s ability
to make choices that have an impact on their lives. Yet, it also elicits the concern that people will be
held accountable (it is “their fault”) if they do not succeed in adopting the recommended practices
and get ill, when in fact other factors prevent them from doing so (e.g., psychological, logistical,
socioeconomic). A focus on personal responsibility could also cause harm by exacerbating people’s
feelings of self-blame, helplessness, and low self-image among those unable to make recommended
changes (e.g., lose weight; Carter et al., 2011). It can also serve to blame, shame, or stigmatize
groups as a whole, especially members of vulnerable groups who do not have the social support
or resources to adopt recommended practices. Research indicates that people from disadvantaged
populations feel more pronounced self-blame for their illness (Chapple et al., 2004). Appeals to per-
sonal responsibility could also reinforce gender roles or cultural stereotypes. Examples would include
women urged to cook healthier foods for their families or young women in road safety campaigns

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encouraged to act as “angels” by keeping male drivers from taking risks (Guttman, 2014). Thus, even
when appeals to positive social norms are employed, they should be scrutinized to avoid placing the
sole responsibility on individuals and eschew gender-role stereotypes.
Another concern associated with the emphasis on personal responsibility in health campaigns is
that a discourse emphasizing personal responsibility makes it appear that individuals have control
over their health outcomes. This can be seen when campaigns emphasize the responsibility to adopt
a healthier lifestyle by choosing healthier foods and engaging in physical activity. This shifts the
focus away from structural, environmental, and social conditions that have a major impact on peo-
ple’s health-related practices. Holding people morally accountable for their health condition could
also serve policies using this argument to avoid providing insurance coverage for health conditions
which some consider caused by people’s voluntary behaviors (Voigt, 2013) or to reduce funding
for healthcare resources (Gordon et al., 2016). Thus, employing appeals to personal responsibility
as a motivator in health communication needs to be accompanied by resources ensuring that the
intended populations have fair opportunities to pursue healthier practices and the capacity to make
informed choices.

Appeals to Positive Social Values

Related to appeals to responsibility are appeals to people’s positive social values. These include
appeals to solidarity, reciprocity, and caring for others. Such appeals have been used to encourage
people to help others in situations of crisis, such as pandemics (e.g., to wear a face mask in order to
protect others from contracting a virus; Dawson & Verwij, 2012), or to engage in prosocial behav-
iors, such as blood or organ donation (Siminoff et al., 2011). Their use can be justified by represent-
ing basic human values. Researchers studying social values cross-culturally have found that people
consistently consider benevolence among the most important human values (Schwartz & Bardi,
2001). Yet, employing appeals to positive social values raises ethical concerns. Although proponents
argue that they reflect the kind of society in which people strive to live, some consider prosocial
appeals as less effective than self-benefit appeals (e.g., reducing consumption to help the environ-
ment). Another concern is that an emphasis on solidarity (e.g., people helping others in need during
a pandemic), similar to an emphasis on personal responsibility, can serve to reduce an emphasis on
the authorities’ obligation to ensure health-promoting policies and resources.

Depriving
An ethical issue often overlooked in health communication campaigns is that the behavior being
discouraged may be important to members of the audience in some significant way. For example,
perhaps the behavior gives members of the target population one of the few pleasures readily avail-
able to them in their lives (e.g., consumption of alcoholic drinks after a long day of work with bud-
dies and then driving home), or perhaps it serves an important sociocultural function (e.g., food with
high caloric fat and sugar content prepared as traditional holiday dishes; sweets given to children
as part of holiday traditions). Therefore, trying to influence practices of socially and economically
marginalized communities raises concerns regarding equity and unintended harm. For example, the
recommendation to avoid the consumption of foods with low nutritional value may require relin-
quishing food consumption practices considered culturally significant or highly pleasurable among
certain populations. Often these practices are part of people’s daily routine and social relations, and
the practices may provide them with emotional satisfaction and social cohesion or serve as a means
for coping with stress (for example, smoking when meeting others as part of a social encounter). But
people with limited economic means cannot easily find ways to replace such practices (MacAskill
et al., 2002). Consequently, health communication campaigns could have an inadvertently negative

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impact on disadvantaged groups by urging individuals to eliminate a practice without offering ways
to replace it with pro-health alternatives. This poses a moral challenge in that health communica-
tion professionals should provide satisfying alternatives to the unhealthy practices people are asked
to give up.

Conclusions and Challenges

Each setting of health communication presents challenges associated with ethical issues—whether it
is meeting the obligation to respect people’s autonomy and refrain from manipulative tactics, avoid-
ing causing harm, avoiding increasing social and health inequities, or efficiently utilizing healthcare
resources for the public good. Therefore, it behooves health communicators to scrutinize each stage of
the health communication process for ethical concerns. This requires engaging relevant stakeholders
in the process, including healthcare providers, patients and their family members, and members of the
community, with a special effort to include the most vulnerable and disadvantaged. This obligation
corresponds to the oft-cited theme that health communication should be carried out as a dialogical
process rather than a one-directional approach. A participative and deliberative approach can also help
address ethical concerns about paternalism and concerns regarding equity by identifying and focusing
on issues and values that are important to patients or intended populations. To avoid causing unin-
tended harm when targeting populations, communication initiatives that aim to promote pro-health
practices need to consider barriers to their adoption, propose ways to address the barriers, and advo-
cate for policy solutions (e.g., policies to reduce the detrimental impact of a media environment satu-
rated with messages from commercial sources that promote the consumption of unhealthy products).
Health communicators also have to be attuned to ethical challenges associated with healthcare’s
increasing reliance on digital communication technologies because digital inequities can be found
within and across countries. Advocacy is needed to ensure that these technologies can be effectively
used by diverse populations, especially those hindered by economic, cultural, social, and language
barriers. The accelerated developments of health-related technologies and the popularity of the
Internet as a health information resource have preceded the development of ethical codes of conduct
for providers, users, and organizations. Recent pandemics illustrate the importance of attending to
ethical concerns associated with privacy and autonomy because various nations employed unprec-
edented surveillance (Eck & Hatz, 2020) and a host of persuasive tactics as part of their national
mitigation efforts (Stolow et al., 2020). By implication, health communicators should be part of
advocacy efforts to identify and address the nuances and complexities of ethical dilemmas and chal-
lenges in digital and non-digital contexts from a health communication perspective.

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 35
RETHINKING IMBALANCES OF
POWER THROUGH HEALTH
COMMUNICATION
Challenges for Scholars, Practitioners,
and Activists

Angela Cooke-Jackson, Andrew Spieldenner, Nicole Hudak,

and Crystal Ben

In the year 2020, the health impacts of COVID-19 are being felt in the United States and across the
globe. During this same year, George Floyd, Ahmaud Arbery, Breonna Taylor, Dominique Clayton,
Eric Reason, and many other African Americans have been killed as a result of police brutality. The
overwhelming sadness of these unwarranted killings and the impact of COVID-19 on communities of
color speak to larger systemic issues that are important to acknowledge and locate in the field of health
communication, especially as we talk about people historically located on the margins. This chapter
aims to describe these extant oppressive systems prior to addressing the health disparities prevalent
within our communities. By doing so, we hope to present an argument that encourages health com-
munication scholars to understand, challenge, and hold themselves accountable as practitioners and
educators. By recognizing the power structures extant within the forms and processes of scholarship
itself, we aim to highlight and acknowledge the truths and experiences of Black, Indigenous, and
other peoples of color, as well as people who identify as LGTBQ+ and individuals with disabilities.
As the number of deaths across the country has escalated from the pandemic, it has put a spotlight
on the social and racial dynamics that influence people’s health. Research demonstrates that there is
a direct correlation between the disparate health outcomes experienced by Black and Brown Ameri-
cans and the systematic racial inequalities that they face (National Research Council, 2004). Barbara
Ferrer, director of the Los Angeles County Department of Public Health, states,

We know that black Americans fare worse than other groups on virtually every measure
of health status and it has become all too common to blame this on individual behaviors,
when in fact the science is clear. The root cause of health inequities is systemic racism and
discrimination and how it limits access to the very opportunities and resources each of us
need for optimal health and well-being.
(Public Health Alliance of Southern California, 2020, para 5)

The Centers for Disease Control and Prevention (CDC) acknowledge that deep racial disparities
across a range of health conditions (e.g., HIV, asthma, diabetes, infant mortality, and life expectancy)
(CDC, 2020) deeply impact marginalized, vulnerable people.

522  DOI: 10.4324/9781003043379-43

 Rethinking Imbalances of Power

People of color and LGBTQ+ communities are diverse, and the impact and context of health
conditions differ broadly. Because these groups do not fit into the dominant culture paradigm, they
are often treated differently (Ford & Yep, 2003). Black and Indigenous people, for example, face
particular challenges that other minority groups may not in the settler colonial system of the United
States. Anti-Blackness persists in U.S. institutions and social contexts, devaluing Black contribu-
tions, communities, lives, and culture (Andrade & Cooper, 2019). Indigenous communities face
persistent erasure, neglect from public institutions, and ongoing disparities despite being the original
inhabitants of the country (Jolivette, 2016). Latinx, Asian Pacific Islander, and Muslim individuals or
people perceived as Muslim are often framed by “immigrant” narratives in the United States, with
its concurrent anti-immigrant policies, beliefs, and practices (Beydoun, 2019; Chavez, 2013). We
bring these facts forward because it is important to highlight contextual realities for various groups
on the margins (Ndiaye et al., 2011).
For all people of color and other marginalized groups, these health disparities are fueled by
structural discrimination and under-resourced communities. Further, Black, Brown, and other
marginalized bodies have always been located in the rhetoric of misrepresentation—underserved,
marginalized, and vulnerable. It is a part of the country’s historical fabric. These terms, like the
people they represent, have been problematized and knowingly relegated into the vernacular of
a systematic approach to healthcare that is precipitated by the weight of racial discrimination.
The oppressive and exploitative histories of Black, Indigenous, Latinx, and other people of color
are extensive and beyond the scope of this chapter. However, without acknowledging them, we
minimize and erase the pervasive grips of supremacy, privilege, and power that continue to erode
the nation.
This chapter is disruptive. It asks the field of health communication to consider our relationship
to marginalized groups. It asks health communication scholars to acknowledge that our ways of
knowing health have historically been “embedded in our taken-for-granted assumptions about what
it means to be healthy, what it means to be ill, how we approach disease and illnesses” (Dutta, 2008,
p. 2). As such, we offer a compilation of health topics from health communication experts who share
membership identity within marginalized groups. Through the lens of their lived experiences, the
authors discuss the role of communication in the health of Black, Latinx (a/o), Native/First People,
LGTBQ+ populations, and individuals with disabilities in the context of the United States. By
making known their membership identity in the communities they study, they are responding to a
“greater consciousness of situational identities and to the perception of relative power” (Angrosino,
2005, p. 734), while also emphasizing the value of recognizing the researcher’s context (race, ethnic-
ity, gender, class, etc.) as part of the narrative analysis.
Disability has gained much-needed visibility in the past decade. Most health communication
research and courses assume able-bodiedness in the approach to conceptualizing bodies, commu-
nities, and communication: what is “normal,” how communities are constructed, and even how
consent is obtained (Kattari, 2019). Critical disability studies have brought focus to how these
regimes of able-bodied norms lie invisible and unnoticed. Centering disability allows for a broader
range of discussions on issues such as life expectancy and capacities where people, populations,
and regions differ (Spieldenner & Anadolis, 2017). Yet much of disability studies remains largely
un-raced, leading to perpetuation of Whiteness in the field: a phenomenon that perhaps makes
disability more palatable for white health communication researchers and students to embrace
(Bell, 2010).
This chapter addresses “difference” in the context of health communication, which in the
white dominant power structure results in health disparities. Some disparities are the result of
oppressive frameworks like racism, and others are the product of capitalism. For some communi-
ties and in some regions, the ongoing pressures of labor, military or police force interventions, or
the reduction of social support and health services produce maiming, or debility—a process that

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“functions not as an incomplete death, or an accidental assault on life, rather the end goal in the
dual production of permanent disability” (Puar, 2015, p. 11). In that context, we see health dis-
parities as intended products of marginalization, so particular identities and key health disparities
are explored.
Because the authors cannot address every aspect of difference, marginalization, or identity, this
chapter focuses on particular communities, highlighting some health issues and contexts in and
around vulnerable groups. Each section begins with an explanation of identities and terms, recogniz-
ing that the processes of working with and in communities requires the capacity to, minimally, call
us by our names. Then we explore specific health disparities and the cultural and social contexts that
guide them. Next, we offer a succinct overview of particular challenges, and then we end by inviting
“researchers and practitioners concerned with fostering and maintaining ethical relationships with
disenfranchised and dispossessed communities and all of those troubled by the possible hidden costs
of a research strategy that frames entire communities as depleted” to confront this problematized
construct and do the work to change this paradigm (Tuck, 2009, p. 409).

African Americans and Health Communication

Identities and Terms

Racial labels provide a distinct place marker for Black people. From chattel slavery to Negro,
Colored, Afro American, Black, and/or African American, this vernacular speaks to the loss of
our core personal identities, tribal affiliations, kinship ties, languages, and other cultural attributes
(Smith, 1995). As such, terms like marginalized, neglected, underrepresented, and other diminutive
constructs are as problematic as the historical descriptors that were placed on Black people when
they were brought to North America as slaves. Jan Nederveen Pieterse (1992) says these terms speak
to the “pathos of hierarchy” (p. 51). These stereotypic terms are reconstructed and reasserted pre-
cisely when existing hierarchies are challenged and inequalities are lessened. They serve to humiliate,
debase, and degrade populations on the margins.
This means that the writing of health in the United States leaves African Americans out, prob-
lematizing reform efforts and making Black health disparities invisible (Smith, 1995). Numerous
historians have scrutinized the ways in which racism and segregation have limited access to health
services and social welfare institutions in the past (Smith, 1995). Understanding these inefficien-
cies is critical as we move to locate the recurring health disparities of Black people and their
communities. For instance, in antebellum America the dominant belief among white Southern-
ers was that innate racial differences between Black and white people created Black and white
health disparities and fitted Black people to be slaves (Smith, 1995). Conversely, many believed
that if Black people became sick, it was because of an inherently weaker constitution rather than
a result of unhealthy living and working conditions. This premise was acceptable among most
white physicians, who believed that African Americans were less likely than whites to experi-
ence certain diseases like malaria or yellow fever, making them better suited to do field labor
(Krieger, 1987).

Focus on African American Health Issues

African American communities in the United States experience health disparities in relation to
white health outcomes across a range of health issues. This section calls attention to two such con-
cerns: COVID-19 and type 2 diabetes, an ongoing and long-term illness that has been intensified
by the current pandemic.

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COVID-19
COVID-19, which is a new disease, has spread widely through African American communities
(CDC, 2020). African Americans are testing positive for the virus at a higher rate than whites, Lati-
nos, and Asian Americans. At the time this chapter was written, African Americans had died from
COVID-19 at a rate of 69.7 per 100,000 people, compared with 30.2 for whites, 33.8 for Latinos,
and 29.3 for Asian Americans (APM Research Lab, 2020). Although Black Americans continue to
experience the highest COVID-19 mortality rate, age-adjusting serves to widen the gap between
Black and white mortality—from 2.3 to 3.8 times as high (APM Research Lab, 2020).
There are already comparatively high numbers of underlying health conditions in Black com-
munities: heart disease, lung disease, asthma, diabetes, and obesity, among others (CDC, 2020).
These health disparities are the result of pre-pandemic realities. Additionally, we know that there are
socioeconomic conditions that intensify the deadly potential of COVID-19. African Americans are
overrepresented in essential jobs, which increases their potential for exposure to the virus (Gould &
Wilson, 2020), and they are more likely to live in multigenerational homes (CDC, 2020). This is a
perfect storm for Black people, causing Black communities in different American cities to see dis-
proportionate impacts when it comes to infections and deaths from COVID-19 (Godoy & Wood,
2020). During this time, we have also witnessed a lack of proper support and missed opportunities for
communication to Black communities about how to prevent COVID-19 (Godoy & Wood, 2020).
Reports show that community leaders and local doctors begged state and federal governments to
send educational information and testing supplies to figure out who was dying in Black communities
(Godoy & Wood, 2020). However, in many cases, state and federal officials did not heed the call of
community activists and local health officials who implored them for support as COVID-19 spread.
During the early months of the COVID-19 outbreak, poor Black communities experienced the
impact of the disease via deaths and joblessness at an alarming rate (Gould & Wilson, 2020).

Type 2 Diabetes
Type 2 diabetes (T2DM), a condition whereby the body does not make enough insulin or does not
use insulin well, has gravely impacted African Americans. Over time, it results in other health prob-
lems such as heart disease, nerve damage, eye problems, and kidney disease (CDC, 2020). Although
everyone is at risk of getting COVID-19, extenuating chronic health issues like T2DM may make
African Americans more likely to get the virus. If they do, they are then more likely to experience
severe illness, long-term complications, and death.
Diabetes has increased at an alarming rate in the United States across many ethnic groups, but it
presents a significantly greater mortality risk factor for African Americans than for whites (CDC,
2020). Indeed, life expectancy for Blacks has been substantially lower than for white Americans
for as long as records have been available. African Americans have numerous risk factors and suffer
high rates of diabetic complications (Office of Minority Health, 2019). Even more alarming are the
familial risk factors among individuals whose parents have had T2DM, factors such as obesity and
heart disease, which are more prevalent among African Americans (CDC, 2020).
Diagnosis of T2DM (historically referred to as late-onset diabetes) among Black children and
adolescents has risen at an alarming rate (Temneanu et al., 2016). This increase has resulted in a
higher percentage of Black children and adolescents living with multiple, lifelong complications and
suffering a profound decline in quality of life. These problems are exacerbated by long-term health-
care costs and lack of access to care (CDC, 2014) and by the fact that many poor Black young adults
live in families where one or both parents suffer with T2DM and where communities lack access to
quality food, safe living environments, and accessible open spaces in which to exercise (NIH, 2017).

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Although lifestyle change has been demonstrated as effective in preventing or delaying the onset
of T2DM in high-risk individuals, poor living environments, below median income, and food inse-
curity can impede one’s ability to make changes. Given its association with older age, obesity, family
history of diabetes, prior history of gestational diabetes, impaired glucose tolerance, and physical
inactivity, T2DM puts marginalized racial groups in dire situations, especially when considering the
expectations to maintain appropriate blood sugar levels with proper diet and exercise programs, to
lose excessive weight, or to follow a medication regimen (CDC, 2020).

Challenges for Health Scholars, Practitioners, and Activists

Health communication performs a central role in the delivery of healthcare and the promotion of
public health (Kreps, 2006). As health communicators, we must grapple with the reality that when
communities of color experience systemic assaults, our inability to address the dominant position
will only exacerbate the underlying issues of systemic racism and structures of inequity and inequal-
ity. Understandably, it takes considerable effort to unpack the role of power and privilege in research
relationships, but it is imperative that researchers understand and interrogate their power and privi-
lege positions. Not doing so only perpetuates and gives insufficient attention to the historical con-
struction of policies and laws that create and sustain the marginalization of certain groups.
Beyond this, we must accept that the impact of systemic racism in Black communities intensifies
the deep mistrust African Americans have for certain structures (medical systems, policing, banks,
etc.) and the people who oversee them (doctors, etc.; Smith, 1995). Only at this point can we con-
sider whether different person-centric or community-centric research perspectives are useful. For
more than two decades, community-based participatory research (CBPR) has become a research
method believed to be effective for undoing the implications of systemic racism and oppression
(Ford & Yep, 2003). Wallerstein and Duran (2006) believe that CBPR is useful because it starts
with a research topic of importance to the members of the community and seeks to combine their
unique perspectives toward social change to improve the community’s health and eliminate health
disparities. Other models like the culture-centered approach or cultural humility have also been
useful (Dutta, 2008; Fisher-Borne et al., 2014). Health scholars must understand that undoing these
injustices will be “incomparably difficult,” because it can be done only after the dominant culture
understands what it has collectively perpetrated and accepts responsibility to dismantle these systems
of racism, oppression, and supremacy (Rothstein, 2017, p. 217).

Latinx and Health Communication

Identities and Terms

In the United States, terminology about Latinx communities continues to change. For instance,
in much of the United States, popular discourse conflates Latinx with Mexican, a reduction that
obscures the various differences and issues across the populations (Chavez, 2013). Over time, vari-
ous words have come to identify people from South and Central America and the Spanish-speaking
Caribbean: Iberian, Hispanic, Latino/a, Chicano/a, other ethnic-specific terms, and Latinx. Each
includes particular histories and politics (Rinderle & Montoya, 2008). For example, Iberian refer-
ences the Iberian Peninsula, the landmass where Spain and Portugal sit, thus directly connecting to
the Spanish and Portuguese colonial roots. Other terms are rooted in different sociohistorical and
political contexts and speak to different Latinx people differentiated by immigration status, regional
background, and personal identity.
Hispanic indicates something or someone related to the Spanish language. In the United States,
this term has carried different political values. Whereas some ethnic groups, like Puerto Ricans, have

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adopted Hispanic as a viable self-reference, others view Hispanic as a direct connection to colonial-
ism. Depending on region, ethnic group, and generation, the use of Hispanic can carry multiple
connotations, from useful to exclusionary (Rinderle & Montoya, 2008).
Latino/a refers to Latin America and points to the region specifically. Although this term has
been useful in crafting Latino/a as a political and cultural identity in the United States, it also
excludes people from the Spanish-speaking Caribbean. Latino/a is a pan-ethnic identity formed in
the United States to organize people with similar issues and challenges in their engagement with
institutions such as education, government, and healthcare.
Within Latin America and across the Spanish-speaking world, ethnic identity is primary and
ethnic-specific terminology is more common. It reflects nuances of history, culture, and language
that have been the source of community, as well as conflict. Ethnic-specific terminology is also more
important for recent immigrants, who are trying to find others like them or to situate themselves
in relationship to the Latinx communities they encounter (Magaña, 2020). Knowing when ethnic-
specific terms are more appropriate requires researchers and health practitioners to understand the
history and social context of the local community. For instance, the large Salvadoran community
in Los Angeles may be resistant to Latino/a as a category because of its conflation with Mexican
identity in the social discourse; the history of migration and political contexts of Salvadorans differs
from Mexican narratives (Chavez, 2013; Magaña, 2020).
The complex interrelationships of the terms Hispanic, Latino/a, and Latinx are important in
determining the audience and engaging the community. In this chapter, we use Latinx, as it is not
gendered in the same way that other Spanish terms are, thus providing space for people of all gen-
der expressions within the identity. As terminology evolves, care must be taken regarding which
terms are used to engage the Latinx community so that health communication may be effective in
researching and intervening in health disparities.

Focus on Latinx Health Issues

Latinx communities in the United States experience health disparities across a range of health issues.
Here, we will focus on childhood obesity and syphilis, as these two conditions exemplify key differ-
ences from white counterparts in cultural constructions of communication, community, and family.
We will outline cultural contexts that affect these particular health disparities, as well as considera-
tions for developing interventions.

Childhood Obesity
Latinx communities experience high rates of childhood obesity. According to the CDC, in 2015–
2016 obesity rates among children 12–19 years old in the United States was at 18.5%, yet the rate
among Latinx youth in that age range was 25.8% (Hales et al., 2017). In the U.S. discourse on
obesity, a focus is placed on individual behavior (Niederdeppe et al., 2014). Rather than looking
at structural challenges to weight control, public health interventions and media messages focus on
individual choices and actions: how much people eat, exercise, and diet. Structural barriers persist
and perniciously impact Latinx youth obesity. These barriers include the cost of food, the time and
other resources necessary to obtain more nutritious food options, impacts of labor and schools, lack
of appropriate preventative health education, cultural and social values, and policies influencing food
availability in schools and other institutions (Holub et al., 2013; Ramirez et al., 2011).
Interventions focused upon Latinx youth obesity have recognized the importance of addressing
cultural and structural barriers. Culture-based interventions have assessed, utilized, and attempted
to effect change in Latinx ethnic-specific food, body, and health concerns (e.g., diet, diabetes;
Holub et al., 2013; Ramirez et al., 2011). Other interventions have pushed community advocacy

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on policies in organizations and in government to effect changes in menu labeling, food offerings,
the fixed environment, and recreation areas that better fit Latinx communities in schools, neighbor-
hoods, and workplaces (Holub et al., 2013; Ramirez et al., 2011). Some interventions have explored
building community by bringing together parents and other stakeholders to focus efforts on Latinx
youth obesity challenges (Holub et al., 2013; Ramirez et al., 2011).
Obesity remains a stigmatized condition in the United States. When obesity is observed, certain
discourses, such as laziness and disgust, are invoked and directed at the individual. Obese Latinx
young people and their parents become implicated in these discourses, blamed for their weight as if
it were a matter of choice (Greenhalgh & Carney, 2014). Health communication research and inter-
ventions must recognize and adjust for the sociocultural context in which obesity occurs in order to
be effective for Latinx communities.

Syphilis
Sexually transmitted infections (STIs) persist in the United States, even with large-scale health and
sex education initiatives and public health clinics. As in other health outcomes, racial and ethnic
disparities exist in STI rates. Among Latinx men, for instance, syphilis rates in 2018 were 144 per
100,000 compared to 80 per 100,000 among white counterparts in the same year (CDC, 2019).
Syphilis is transmitted directly from person to person based on exposure to an active syphilis infec-
tion. It is associated with the appearance of chancres at the site of exposure before these sores gradu-
ally spread throughout the system as the infection progresses. Syphilis is treatable with appropriate
medication, as long as clinical services are accessible, appropriate, and acceptable.
The majority of syphilis diagnoses in the United States are among men who have sex with men
(MSM), where Black and Latinx gay and bisexual men are disproportionately affected (CDC, 2017).
Homophobia about homosexual sex prevents fruitful public discussion about sexual health, includ-
ing STIs. For Latinx men, there remains a dearth of culturally and linguistically appropriate sexual
health interventions (Ayala et al., 2009). Currently, the majority of sexual health interventions in the
United States for gay and bisexual men of color are about HIV pre-exposure prophylaxis (PrEP),
initiatives funded by the pharmaceutical industry and government agencies (Spieldenner & Hawk-
ins, 2020).
Disparities in syphilis rates will continue in the United States if structural and cultural factors are
not considered. School-based health promotion programs may have limited impact if they do not
account for LGBTQ+ sexual health. However, Latinx communities have the lowest rate of high
school graduation among all racial/ethnic groups in the United States, thus limiting exposure to
school-based programs (Beckles & Truman, 2013). Language and cultural values around sex and
sexuality must be embedded in research and interventions designed for Latinx gay and bisexual men.

Challenges for Health Scholars, Practitioners, and Activists

Like other marginalized groups, Latinx communities benefit from knowledge and consideration of
history, cultural values, and social and structural contexts when health research and interventions are
developed. The ways that issues are researched, discussed, and communicated through interventions
often repeat and reinforce discourses about knowledge, culture, community, and the body in ways
that limit productive understandings of health issues. In the Latinx community, these discourses
include particular notions of belonging and exclusion that are historically and politically based. The
discourses have material impact, as Latinx communities are often pushed out of the education system
and its ancillary social and economic benefits. Finally, communicating effectively is not just about
the use of Spanish, English, or Portuguese; it is also about understanding a community’s cultural
constructions around health, illness, healing, community, sex, relationships, and family.

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Native, Indigenous, American Indian/Alaskan Native and Health

Communication

Identities and Terms

As the first inhabitants of what is now the United States, Native peoples hold a distinctive position
in U.S. society. Nearly 2% of the U.S. population claims Native ancestry, with 5.2 million reporting
having some American Indian/Alaskan Native (AI/AN) heritage and 2.9 million reporting solely
AI/AN heritage (Norris et al., 2012). Not only are they often categorized as a singular racialized
minority group but members of the 574 federally recognized tribes also maintain a unique legal
and political status as both citizens of the United States and of their sovereign tribal nations. The
existence of Native peoples in these lands is central to the formation of the settler colonial state,
and their treaties with the federal government have ensured a degree of sovereignty to engage in
government-to-government relationships. Although these tribal citizens are eligible for federal pro-
visions like land, education, and basic healthcare secured through the U.S. Constitution, treaties,
court decisions, and federal statutes, hundreds of non-federally recognized tribes are not included in
these federal obligations (National Congress of American Indians, 2021).
Given the social, historical, and linguistic diversity among these peoples, the terminology for how
we refer to regionally and tribally distinct Indigenous groups has shifted over time and is in continual
flux. The general term Native American is often used to describe AI/AN, as well as Native Hawaiians
and First Nations of Canada. The use of the term Indigenous more commonly denotes original popu-
lations affected by colonization and links common experiences and struggles across international
borders. Whereas most terms continue to be used interchangeably, many AI/AN peoples prefer to
be identified first by their particular tribal designation(s) rather than the pan-ethnic terms of AI/AN,
Native, Native American, or Indigenous.
American Indian and Alaska Native are the official terms used to describe a “person having origins
in any of the original peoples of North and South America (including Central America), and who
maintains tribal affiliation or community attachment” according to the U.S. Office of Management
and Budget (Norris et al., 2012, p. 2). AI/AN people are the only group in which the federal gov-
ernment calculates membership by using blood quantum, or the calculation of AI/AN ancestry
based on the percentage of “Indian blood” one has. This practice has been contentious, as many
Native people see it as an imposed system using imprecise census rolls that recorded “full blood”
Natives in the early 20th century. Due to miscegenation and other forms of Indigenous erasure, the
use of blood quantum threatens to diminish tribal membership and therefore compulsory federal
protections.
The variety of terms used to classify Indigenous peoples compels health communication research-
ers to address the trade-offs between using aggregate categories and smaller, tribally specific units
of analysis (Blankenau et al., 2010). Interrogating the terminology used to refer to Native people
frames the health issues at hand, potential interventions, and available resources based on the specific
political and legal category Natives might assume. Although some health research that generalizes
the health of Native people is valuable, health communication researchers must be cognizant of how
research can be distorted if only conceptualized from the aggregate level.

Focus on Indigenous Health Issues

The impact of colonization on the health of Indigenous populations cannot be overstated. Infec-
tious disease and war in the frontier era and later attempts at cultural genocide through assimilation
strategies intended to eradicate Indigenous bodies, land, language, and culture underpin the range
of health disparities currently experienced by Native peoples. Although enrolled tribal citizens are

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eligible for healthcare through the Indian Health Service (IHS), an agency within the Department
of Health and Human Services, accessing quality care is still fraught with challenges. Chronically
underfunded IHS facilities are predominantly located on or near tribal reservations or in rural areas,
and the majority and growing population of Natives who live off-reservation or in urban communi-
ties often lack access to no-cost health resources. Further, the impact of high rates of poverty, land
loss, disruption to traditional food systems, and environmental contamination, among other atroci-
ties, has left a legacy of generational and historical trauma that continues to underlie and cause many
ongoing negative Native health outcomes.
Indigenous peoples in the United States experience steep disparities in access to healthcare in
comparison to other Americans, with high rates of premature death due to diabetes, cancer, and
other cardiovascular diseases (Sancar et al., 2018). This section calls attention to two such concerns:
COVID-19 and cancer. Here, cultural contexts that affect these health disparities are outlined and
interventions are mentioned.

COVID-19
COVID-19 has had a devastating impact in Indigenous communities and has called attention to
many of the existing health disparities in Indian Country. With a COVID-related death rate of 60.5
per 100,000, Indigenous Americans are dying at a rate that is 3.5 times higher than whites (APM
Research Lab, 2020). Poor healthcare, inadequate infrastructure, and generational poverty are con-
tributing to more severe illness and higher mortality rates. The 1918 flu pandemic and the 2009
H1N1 pandemic have shown that tribes are particularly at risk for respiratory infectious illness, with
mortality rates that were four to five times higher than U.S. averages (CDC, 2009). Further, a greater
proportion of Native people have underlying health conditions (e.g., chronic liver disease, cirrhosis,
chronic lower respiratory diseases, and diabetes) that make them more vulnerable to contracting and
dying from COVID-19.
The prescribed pandemic precautions of washing hands, wearing masks, and maintaining physi-
cal distance from others have proven difficult for the Navajo Nation, which has been particularly
devastated by COVID-19. With severe housing shortages on their reservation, about half of the
citizens live in overcrowded and multigenerational homes, which poses a significant risk for spread
of the virus. The expansive reservation, which is about the size of West Virginia, also lacks water
infrastructure—about 15% of houses do not have running water. Further, business shutdowns have
impacted the tribal tax base as well as the financial solvency of many families. In response, tribal and
public health officials are operating alternative care sites where sick tribal members can convalesce
away from their families. Handwashing stations, devised for use in the developing world, have been
deployed across the reservation. Health communication has proven key in conveying important mes-
sages, but a small healthcare workforce and limited medical resources and supplies are continuing to
exacerbate the existing cracks in the system.

Cancer
Although cancer was reportedly rare among AI/AN populations in the early 20th century, it is now
the second leading cause of death among American Indians and Alaskan Natives nationwide, making
it consistent with the data in the general population in the United States (Rhoades, 2001). Unfortu-
nately, cancer death rates are rising more among AI/AN people than among whites, and Native can-
cer patients are living shorter lives post-diagnosis than whites (CDC, 2020). In the Northern Plains,
Southern Plains, Pacific Coast, and Alaskan regions, lung and colorectal cancer rates are nearly two
and a half times higher in AI/AN males and nearly three times higher in AI/AN females than in
whites (Melkonian et al., 2019). Disparities for lung, female breast, and liver cancers are widening as

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well. Researchers attribute high incidence rates to variations in the social and environmental factors
that contribute to population differences in obesity, physical inactivity, alcohol consumption, and
smoking (Cobb et al., 2014). Strained resources and the lack of culturally tailored cancer treatment
also contribute to cancer incidence disparities (Joe, 2003).

Challenges for Health Scholars, Practitioners, and Activists

Indigenous distrust for the research community is longstanding, and infamous instances of abuse are
many (Deloria, 1980). As Maori scholar Linda Tuhiwai Smith notes, “The word itself, ‘research’, is
probably one of the dirtiest words in the Indigenous world’s vocabulary,” and she argues that research
is “inextricably linked to European imperialism and colonialism” (Smith, 2012, p. 30). To avoid
reproducing the imbalance of power between the researcher and their subjects, Indigenous scholars
have called for the development of desire-centered rather than damage-centered research (Tuck, 2009).
This approach allows Native people to guide the work rather than allowing outsiders to simply
document the pain of Natives. Even when the intention of outsiders may be to hold the powerful
accountable for their oppression, their methods still often cause additional harm and injury to the
population under study. Engaging in research in Indian Country requires considering the “goals and
aspirations” of Indigenous peoples as “inform[ing] the methods and the shape of our theorizing and
analysis” (Simpson, 2007, p. 68).
Community-based participatory research has been championed as a “decolonizing methodology”
that more fully acknowledges the power dynamics in research by eschewing the once-dominant
extractive model of research (Smith, 2012; see also Chapter 24, this volume). However, CBPR
is often initiated by outside researchers and aims to foster Indigenous participation or partnership
(Peterson, 2010). Taking CBPR a step further, tribes are increasingly engaging in tribally driven par-
ticipatory research (TDPR), which ensures that tribal governments retain the authority to set their
own research agendas that align with tribal nation-building (Mariella et al., 2012). This exercising of
their sovereignty and self-determination has recast the role of outside health researchers as important
contributors to the goals of building capacity within tribal nations.

LGBTQ+ and Health Communication

Marginalization occurs across bodies and includes sexuality and gender identity. This has particular
impact in health communication and limits the kinds of conversations, policies, and discourses that
we are able to have about gender identity, sexual partners, companionship, and intimacy. Sexuality
and gender identity do not exist without race: In fact, power gets played out differently where these
intersectional identities meet. In this section we will look at sexuality and the ways that sexuality and
gender identity impact the LGTBQ+ community in health communication.

Identities and Terms

Sexual and gender identities continue to change, expanding beyond the binaries of gay/straight or
trans/cis. LGBTQ+ stands for lesbian, gay, bisexual, transgender, queer, and the other diverse sexual
identities that include pansexuality, asexuality, and those still evolving. The acronym represents those
who are not defined by rigid gender and sexual definitions, and it accounts for those who experi-
ence marginalization and discrimination based on gender and sexual identity. The United States has
a long history of criminalizing and pathologizing sexuality and gender when it falls outside of the
prescribed heterosexual and cisgender norms (Mogul et al., 2012). From imprisonment to manda-
tory treatment to loss of employment and housing, being identified as LGBTQ+ has always had a
cost. LGBTQ+ rights have been and continue to be precarious and up for debate. Even within and

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among LGBTQ+ populations, some bear a heavier weight from discrimination and marginalization
through lack of resources (socioeconomics, employment, education), how intersectional identities
(including race, class, gender identity, and ability) converge, and distance from the LGBTQ+ com-
munity norms around race, gender, and class (white, cis, and middle class; Ferguson, 2019).
Heterosexuality is not—and never has been—a stable and static identity category. Rather,
LGBTQ+ individuals and behaviors have existed across communities, regions, and time (Ferguson,
2019). People and cultures develop language to account for experiences, and these languages are
sociohistorically situated. Even as language develops and becomes part of usage both among and
about LGBTQ+ individuals, history serves as a record of normativity, a norm that silences LGBTQ+
possibilities (Snorton, 2017). This has particular impact in health communication, specifically for
groups already marginalized in society. Clinicians, researchers, and students may be unfamiliar with
the LGBTQ+ presence within groups such as immigrants, communities of color, poor people, and
people with disabilities.
Transgender is an umbrella term used to describe those gender identities that are not cisgender.
Cisgender refers to those who identify with the gender identity they were assigned at birth. For
example, if you were labeled as female at birth and identify with the female gender, that means you
are cisgender. People can mistakenly believe that transgender identity requires a medical transition
of the body. However, transgender people include those who may or may not change their physi-
cal appearance to reflect their gender identity. People of trans experience are often included in the
LGBTQ+ acronym but remain underserved by service providers, researchers, and community cent-
ers focused on gay men and lesbians (Ferguson, 2019).
The term queer has multiple meanings and captures aspects of gender and sexual identities that
fall outside of cisgender and heterosexual identities. In this context, we use queer to represent those
who identify outside of gender and sexual binaries. Queer is sometimes used in the literature to
encompass the entire range of the LGBTQ+ acronym; however, researchers should be cognizant
that queer can have multiple meanings and need to define their use of this term in academic work.
The LGBTQ+ acronym tends to conflate gender and sexual identities. Health issues relevant to
those with diverse sexual identities are not necessarily the same as for those with diverse gender iden-
tities, though there may be some commonalities. The experience of disclosure in a health setting,
for example, can be vastly different for queer sexual identities versus trans identities when seeking
medical intervention. The bodies of literature for gender and sexual identities are often separated for
this reason. When talking about LGBTQ+ health, it is essential to note whether the whole range of
identities and experiences is being discussed or whether only gender or sexual identity is the focus.

Focus on Health Issues

Healthy People 2020 lists queer communities as a disparate health group accounting for multiple
health issues. Here we will focus on STIs/HIV and mental health concerns. Healthy People 2020
lists these health disparities as concerns for the population, and much of the current literature on
LGBTQ+ health focuses on these topics (ODPHP, 2020).

STIs/HIV
Sexually transmitted infections and HIV are often a focus of queer health. Healthy People 2020
reports that gay men (especially among communities of color) and transgender individuals have
higher risk and prevalence of STIs/HIV (ODPHP, 2020). Although these issues are significant,
when health literature and interventions focus primarily on them, other elements of queer health
remain unaddressed. Additionally, findings that may apply to some groups encompassed by the
LGBTQ+ acronym can be misconstrued as applying to all. In a study on heterosexism in healthcare,

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homosexual participants described incidents where their healthcare providers not only assumed that
they had STIs or HIV based on their sexual identity alone but also often tested or even treated for
STIs/HIV without the patients’ knowledge or consent (Hudak, 2016).
One of the reasons healthcare providers and researchers emphasize and focus on STIs/HIV
among LGBTQ+ populations is that medical education perpetuates heterosexism. By assuming
that all patients are heterosexual (until proven otherwise), healthcare providers and researchers can
overlook critical health indicators and interventions. Further, medical schools do not require any
training on queer health issues, and those that do address queer health offer an average of five hours
of training on the topic (Obedin-Maliver et al., 2011). Even medical textbooks often ignore queer
identity and discuss only heterosexual individuals in their materials (Murphy, 2016; Zuzelo, 2014).
When researchers discuss queer identity in health contexts, it becomes either a discourse on STIs/
HIV (Robertson, 2017) or on queerness as a “special topic,” which then labels an LGBTQ+ identity
as something exotic (Murphy, 2016). Medical education often does not include LGBTQ+ identities
in everyday health encounters, such as family practice clinics where LGBTQ+ families might bring
their children (Murphy, 2016). Therefore, healthcare providers may only operate from an STI/HIV
health paradigm when seeing queer patients if their education did not include a balanced exposure
to LGBTQ+ health issues.
Finally, there is a distinction between sexual behavior and sexual identity. The sexual practices in
which a person engages may not match their identity, which is why in the medical literature there
is often a discussion of men who have sex with men versus a gay/bisexual/pansexual male identity.
Because of this distinction, it cannot be assumed that sexual behavior is the only thing that matters
in a health context (Hudak, 2020). However, in medicalizing sexual behavior, there is a tendency to
believe that sexual identity does not matter in a healthcare interaction and to leave it aside. Unfor-
tunately, by doing so, healthcare providers may fail to see the “whole person” when treating queer
individuals (Bjorkman & Malterud, 2007), therefore failing to follow core principles of patient-
centered communication.

Mental Health
Historical and current factors must be addressed when discussing mental health in the queer
community. First, the medicalization of both diverse gender and sexual identities has problem-
atically shaped the relationship between healthcare and queer folk. The Diagnostic and Statistical
Manual of Mental Disorders (DSM), an authoritative publication of the American Psychiatric Asso-
ciation, initially labeled homosexuality as a mental disorder. Even with the removal of homo-
sexuality from the DSM in 1973, this history of pathologizing queerness is still impacting care
(Carmack, 2014).
For the trans community, the DSM can still be used to label transgender identity as something
medically deviant while it can also function as a resource for authorizing health insurance coverage
(Redfern & Sinclair, 2014). Having gender dysphoria listed as a mental health disorder in the DSM is
both necessary and problematic. The problem is that it defines a transgender identity as an illness that
needs to be treated, which is not a view held among those who identify as transgender. However, the
DSM listing is also necessary because it provides an argument for surgery and medical intervention
to be covered by health insurance for those who believe that “gender variance is not a psychiatric
disease; it is a human variation that in some cases requires medical attention” (Whalen, n.d., para. 4).
When looking at mental health statistics for the queer population, it is vital to recognize that
queer identity does not cause mental health disorders. A person may be queer and have a separate
mental health issue, like depression (e.g., stemming from family caregivers reacting poorly to their
child coming out; Ryan et al., 2020). It is also possible that factors like minority stress (Rogers et al.,
2017) may influence levels of depression and anxiety among LGBTQ+ individuals.

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Challenges for Health Scholars, Practitioners, and Activists

Health communication challenges pertaining to the queer population are not about lowering rates
of STIs/HIV, getting lesbians to weigh less, or reducing alcohol consumption but rather are about
addressing the systemic discrimination that promotes these health issues. Medical education needs to
improve to account for all bodies in medical spaces. The examples used in texts and classrooms should
include a diverse range of bodies, not just the white, cisgender, heterosexual, middle-class male.
Queer bodies across racial/ethnic groups need to be fully represented in all aspects of healthcare.
Many vital health topics for the queer community are significantly underrepresented in research
and interventions. First, we are missing how fear of discrimination can prevent queer and trans
folk from seeking medical care (Bjorkman & Malterud, 2007). Second, negotiating disclosure of
LGBTQ+ identity is seen in the literature (Venetis et al., 2017), but researchers are still trying to
understand how healthcare providers should initiate the conversation. For the transgender commu-
nity, healthcare providers need medical education not only on the nuances of medical transitioning
but also on offering affirmation for trans people whether they are transitioning or not. Overall, we
need more research and education on queer health matters that emphasize how systems of power
create and sustain health disparities.

Takeaways for the Future of Health Communication

Health communication can be a powerful intervention in addressing health disparities across race and
other kinds of marginalization. In this chapter, we explored how various communities understand
and experience particular health disparities. We have centered this discussion within the cultures
of the communities and language about the communities and their health conditions in order to
excavate the social contexts that can be missed in health communication research when researchers
narrowly focus on the health condition and not the community experiencing it. Looking at how
communities and individuals communicate about health and illness provides key insights to public
health and community-driven actions and policies. Yet health communication and other related
fields experience challenges with communities of color and other marginalized groups, defining
them as “difficult to reach,” “vulnerable,” or “at-risk” rather than as thriving communities with cul-
ture and life. The president of the American Public Health Association (APHA), Dr. Camara Phyllis
Jones (2016), asserts,

to move forward in these sad and perilous times, we need to overcome helplessness, over-
come fear, and overcome inaction in the face of need. We must organize and strategize to
act to dismantle this system and put in its place a system in which all people can know and
develop to their full potential. No more helplessness! No more fear! No more inaction in
the face of need.
(p. 1717)

Within health communication, moving forward would include centering the meaningful participa-
tion (as research partners, for example) and voices of people of color and other marginalized groups
in order to focus on community needs and strengths. We are tasking our colleagues in research and
health services with looking at mechanisms beyond a community advisory board; we ask for research
and health services that do not merely chronicle health disparities but look at policy and structural
changes that impact health disparities. For instance, pervasive and institutionalized transphobia and
its intersections with racism, sexism, and stigma lead to reduced socioeconomic and educational
opportunities, adverse health impacts, and a heightened criminalization of individuals living the trans
experience (Redfern & Sinclair, 2014).

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In research, cultural and sociohistorical contexts are key to understanding what questions to ask
and where to intervene. Too often, research can become a way of confirming researcher assump-
tions about a health condition. Data points are narrowed down for ease of analysis; data that emerge
from the research process can be seen as extraneous rather than central to understanding phenomena.
When looking at interpersonal dynamics, for instance, larger structural issues may come into view
(e.g., poverty, institutionalization), but those data are often left out rather than centered.
We offer three key points for health communication and marginalized communities. First, cultur-
ally driven interventions that address specific health disparities among Black, Indigenous, and Latinx
people of color tailored to the social and cultural context of their communities is essential (Liburd,
2010). Second, social context matters. For instance, research that addresses LGTBQ+ health dis-
parities must transcend heteronormative models and expectations that are entrenched in reductive
perspectives. Finally, health disparities cannot be solved by “fixing” communities: Policy and other
structural conditions must be considered. Interventions must take an intersectional approach (Cren-
shaw, 1989) while considering the social determinants of health, but, more importantly, understand-
ing the historical injustice that frames how marginalized groups are viewed should be a mandate.

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 36
CONVERSATION ANALYSIS AND
HEALTH COMMUNICATION
Kristella Montiegel and Jeffrey D. Robinson

For at least 30 years, health communication research focusing on provider-patient interaction has
struggled with an inconvenient truth: Concrete communication behaviors documented in (tran-
scripts of) audio- or videotapes of medical visits (e.g., a patient’s inquiry about appropriate treat-
ment for migraines or a provider’s treatment recommendation to alter diet) are rarely significantly
correlated with providers’ and patients’ post-visit self-reports of the occurrence of such concrete
behaviors; in many cases, these correlations are close to zero (Beckett et al., 2009; DiMatteo et al.,
2003). Given that collecting and analyzing health-related audio- or videotapes is relatively expen-
sive, time consuming, and procedurally complex in terms of institutional review board require-
ments, and given that patients’ self-reports of communication behaviors are routinely associated
with health outcomes (Roter & Hall, 2006), some researchers have used the aforementioned
inconvenient truth to support the position that “A successful . . . communication event is one
that a [patient] recognizes as having occurred, it is not merely one that a trained observer can say
technically occurred” (Beckett et al., 2009, p. 1746). However, in our view, this justification to
circumvent the analysis of concrete behavior is untenable. First, as we demonstrate in this chapter,
concrete communication behaviors are associated with health outcomes. Second, an understanding
of how such behaviors are or are not associated with health outcomes is essential to both accurately
understand behavior-perception (dis)connections (because perceptions are also important) and to
competently train providers and patients how to improve their healthcare communication toward
the goal of better outcomes.
Given that analyzing concrete behavior is necessary, this chapter reviews several ways in which
the dominant, contemporary, theoretical, and methodological framework for the analysis of social
interaction—that is, conversation analysis (hereafter, CA; Heritage, 2009; Sidnell & Stivers, 2013)—
contributes to the study of provider-patient interaction. CA is a naturalistic, inductive, qualitative
approach to the study of generalizable patterns of interaction. Across the field, researchers have
pursued a variety of perspectives, such as comparative (Sidnell, 2009), feminist (Kitzinger, 2000),
and applied CA (Antaki, 2011). In general, CA research has two main foci: ordinary/mundane con-
versation (e.g., between friends, family members) and talk in social institutions, such as healthcare
settings. A thorough review of the CA literature on provider-patient interaction is beyond the scope
of this chapter; therefore, we limit our review to lines of CA research that fulfill the full definition
of health communication provided by the Centers for Disease Control and Prevention (2020): “the
study and use of communication strategies to inform and influence decisions and actions to improve
health” (para. 1). In other words, rather than reviewing the entirety of CA’s qualitative findings in

DOI: 10.4324/9781003043379-44 539

 Kristella Montiegel and Jeffrey Robinson

the context of provider-patient interaction (for reviews, see Leydon & Barnes, 2020; Maynard &
Heritage, 2005), we limit our review to such findings that have ultimately been quantified for the
purpose of demonstrating their systematic association with health outcomes. Even this review is
selective.
This chapter is divided into two sections. The first section reviews a selection of CA’s purely
qualitative findings, emphasizing elements of a CA perspective that distinguish it from alternative
approaches to the analysis of interaction, such as the use of pre-existing coding schemata (e.g.,
Roter & Larson, 2002). The second section reviews how these qualitative findings are associated
with health outcomes and have been translated into successful interventions to influence providers’
behaviors (e.g., in the form of randomized controlled trials).

Conversation-Analytic Contributions Through a Selection

of Qualitative Findings
In this subsection, we use select qualitative CA findings to review three CA contributions to the
analysis of provider-patient interaction: (a) action agendas; (b) sequential organization; and (c) the
position of actions relative to medical activities.

Action Agendas
CA has powerfully demonstrated that (a) people produce and understand interaction primarily in
terms of “social action,” as opposed to “information” (Schegloff, 1995) and (b) different actions
constrain subsequent talk in subtly different ways (this latter point is developed further in the
next section on “sequence organization”). CA’s conception of action is distinct from grammati-
cal form and extends far beyond “information seeking” and “information giving.” This is one
crucial distinction between CA and many pre-existing schemata used to code interaction (e.g.,
Roter & Larson, 2002). For example, rather than conceptualizing providers as “asking ques-
tions,” it is more accurate to conceptualize them as performing medical actions, such as soliciting
patients’ chief medical concerns, taking patients’ medical histories, etc. These actions can all be
performed through a similar grammatical format—such as an interrogative (or, vernacularly, a
“question”)—yet each action is understood and responded to very differently (as shown later).
Other categories of social action include providing diagnoses and treatment recommendations.
These actions can all be performed through a declarative grammatical format (e.g., I think you
have a sinus infection, I’d like to put you on an antibiotic), yet they, too, are understood and responded
to very differently.
Purely qualitative CA studies of provider-patient interaction have a major goal of describing and
explaining action formations, that is, all of the conduct-in-context (e.g., words, sounds, gestures)
required to produce recognizable action and “correctly” understand others’ actions. This represents
another crucial distinction between CA and other methods of coding interaction with pre-existing
schemata, namely that CA attempts to first discover and describe actions that are relevant to partici-
pants’ lifeworlds (Mishler, 1984). This stands in contrast to many pre-existing schemata embodying
a questionable analytic assumption that their finite code categories represent an exhaustive list and
description of actions that matter for participants (Patton, 1989). The result is that many coding
schemata exclude important actions and frequently misrepresent the actions they are designed to
capture (Sandvik et al., 2002; Stiles & Putnam, 1995).
These points are put into relief by the fact that the nature of action is rarely intuitively obvious,
as demonstrated by the following three examples: (a) soliciting patients’ chief medical concerns, (b)
recommending that parents vaccinate their children, and (c) providing treatment recommendations.

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 Conversation Analysis

Soliciting Patients’ Chief Medical Concerns

One key medical goal is soliciting patients’ chief medical concerns, including their circumstances,
symptoms, etc. Consider the three bolded questions in the excerpts below.

Extract 1 (adapted from Heritage & Robinson, 2006, p. 92)

01 DOC: What can I do for you today?
02 (0.5)
03 PAT: Well- (0.4) I feel like (.) there’s something
04 wrong down underneath here in my rib area.
Extract 2 (adapted from Clemente et al., 2008, pp. 8–9)
01 DOC: Tell me a little bit from your point of
02 view (.) What’s going on?
03 (0.7)
04 PAT: Well, (0.3) uhm (0.5) since I was twelve
05 years old I- (0.2) produced- (.) uhm (0.2)
06 ovarian cysts so I have (0.2)
07 DOC: Mm hm,
08 PAT: Pain from that.. hhh And then (.) it kinda
09 just got outta hand and they did a laparoscopy. . .
Extract 3 (adapted from Robinson, 2006, p. 33)
01 DOC: How are you feelin’ to[da:y.]
02 PAT: [.hhhh]h Better,
03 DOC: And your sinuses?

Many coding schemata, which tend to conflate grammatical form and action by operationalizing
code categories according to the former, would effectively (but incorrectly) represent the above three
questions as accomplishing “the same” action; that is, they would be coded as “open-ended questions”
designed to seek medical information. However, Robinson (1999) demonstrated that these questions
constitute subtly different actions that have dramatically different consequences for patients’ responses.
The question in Extract 1 is a Wh-interrogative that encourages patients, as a first order of business, to
present their chief concern. Furthermore, as designed, this question tacitly claims that the physician
lacks information about the patient’s concerns, which encourages expanded problem presentation.
Compared to Extract 1, although the question in Extract 2 ends with a similar Wh-interrogative
(e.g., “What’s going on?”), it is packaged in (prefaced by) a Tell-me format, which specifically
encourages patients to produce narratives (Clemente et al., 2008). Qualitative evidence suggests that,
compared to standard problem presentations as in Extract 1, narratives are longer and more detailed,
resulting in more medical context, symptoms, etc. (Halkowski, 2006).
Common sense might suggest that the question format in Extract 3 (“How are you feeling?”) is
“open” and psychosocially sensitive. However, Robinson (1999) demonstrated (perhaps counterin-
tuitively) that this format performs the action of soliciting, as a first order of business, an evaluation
of a particular, recipient-owned, currently experienced condition that is known by the speaker and
typically related to physical health. Thus, “How are you feeling?” is actually narrow and biomedically
focused and tailored to visits in which patients are following up on problems for which they have
already been treated. As expected, the patient responds with, “Better,” (line 2), which is a report
of improvement on, and thus a positive evaluation of, the state of a particular and ongoing health
condition. Heritage and Robinson (2006) found that, compared to questions like that in Extract 1

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 Kristella Montiegel and Jeffrey Robinson

(“What can I do for you today?”), “How are you feeling?” actually generates shorter and less medi-
cally complex problem presentations.
We have just seen how the question format “How are you feeling?” operates more like a closed-
ended question than an open-ended one. Heritage and Robinson (2006) also found that true closed-
ended formats (used to solicit chief concerns), such as that in Extract 4, are even more restrictive.

Extract 4 (adapted from Heritage & Robinson, 2006, p. 95)

01 DOC: You’re having knee problems since June?
02 PAT: Yes.
03 DOC: Okay what have you done for that? Since then?

This question format (“You’re having knee problems since June?”) is a request for confirma-
tion that encourages patients, as a first order of business, to produce tokens of either confirmation
or disconfirmation (as opposed to a presentation of an actual medical concern), which the patient
does: “Yes” (line 2). Furthermore, as designed, this question tacitly claims that the physician already
has information about the patient’s concerns, which discourages expanded problem presentation.
The rules of turn taking (Sacks et al., 1974) provide physicians with a formal opportunity to speak
immediately after patients’ (dis)confirmations, which can result in patients losing the opportunity
to present their problems according to their own agenda. This is what happens at line 3 when the
physician launches into history-taking.

Recommending That Parents Vaccinate Their Children

A key medical goal for pediatricians is ensuring that children are adequately vaccinated, and thus a
routine medical action during (at least) pediatric well-visits is seeking vaccination adherence. Opel
et al. (2013) found that this action can be designed (and thus can vary) in at least two different ways,
represented by Extracts 5–6.

Extract 5 [GS01]
01 DOC: So he has some pokes to do today?
02 (0.2)
03 MOM: Oh: great.
Extract 6 [P2MB02]
01 DOC: What’s your plan for tod[ay?] (re: vaccines)
02 MOM: [.hh]hh I don’t know.

In Extract 5, the physician’s “So he has some pokes to do today” embodies a presumptive format,
or one that linguistically presumes compliance and encourages patients, as a first order of business, to
either accept or reject the vaccination proposal. Alternatively, in Extract 6, the physician uses a par-
ticipatory format, in this case an open-ended Wh-question that, rather than presuming compliance,
solicits the mom’s desires regarding vaccination (as opposed to her acceptance or rejection of a vac-
cination proposal). Qualitative evidence suggests that, compared to the participatory format (which
might be more patient-centered; Opel et al., 2012), the presumptive format results in increased
vaccination rates (Opel et al., 2015).

Recommending Treatment
Another example of the nuance of medical action is Stivers et al.’s (2018) work on primary care treat-
ment recommendations. Drawing from a large set of U.S. and U.K. data, the authors identify five

542
 Conversation Analysis

different types of treatment recommendation actions: pronouncements, suggestions, proposals, offers, and
assertions. Although all of these actions are regularly understood as possible treatment recommenda-
tions, one key dimension in which they differ involves the amount of deontic medical authority they
communicate (Stevanovic & Peräkylä, 2012), or the degree of rights and legitimacy that physicians
claim to be able to make to enforce the treatment recommendation. In U.S. contexts, treatment
recommendations most commonly come in the form of pronouncements, which accentuate physicians’
authority and agency over the treatment recommendation. As such, pronouncements discourage
patient resistance and minimize their opportunity for involvement in treatment decision-making.
For an example, see Extract 7 (analyzed in greater detail by Stivers et al., 2018):

Extract 7 (adapted from Stivers et al., 2018, p. 1337)

01 DOC: I think we have to investigate you for anemia.
02 (0.3)
03 PAT: Oka:y?
04 DOC: I’ll start you on treatment with iron tab- supplements.
05 PAT: R(h)ight. Okay?=

In the wake of diagnosing the patient, “I think we have to investigate you for anemia” (line 1),
the physician’s pronouncement, “I’ll start you on treatment with iron tab- supplements,” presents the
treatment decision as already determined. Accordingly, the patient responds by simply agreeing and
accepting: “Right. Okay” (line 5).
In contrast to pronouncements, assertions are designed so as to imply treatment recommendations
rather than as directing patients to follow a course of action. In the U.K. context of neurology, Toe-
rien (2018) demonstrated that assertions—sometimes called option-lists (Chappell et al., 2018)—are
produced and understood as extremely cautious treatment recommendations by indicating the exist-
ence of treatments without demanding immediate acceptance/rejection and highlighting patients’
right to choose. For example, see Extract 8.

Extract 8 (adapted from Toerien, 2018, p. 1359)

01 DOC: Um in the meantime for your pain um (0.2)
02 (you-/you’c-) (0.7). tc.hh u::m (0.2) there’s a tablet
03 called <there’re a couple of tablets that we often use=
04 [There’s one called (.) gabapentin. [.hhh u:h=and
05 PAT: [((slight nod)) [((nods))
06 DOC: there’s one- <which is an antiepileptic drug but
07 (0.3) it’s quite good for neuropathic pain.
08 =.hh[h There’s one called amitriptyline=
09 PAT: [Uh
10 DOC: =which is an (0.2) old type of antidepressant
11 (0.2) but again it’s quite helpful for um
12 neuropathic type of pain.
13 (0.1)
14 PAT: Yeah.

The patient responds by nodding at line 5, producing a continuer (Schegloff, 1982) at line 9, and
agreeing at line 14 (vs. accepting), all of which treat the physician’s assertion more as merely provid-
ing information than as a treatment recommendation, per se. Compared to treatment pronounce-
ments, treatment assertions—at least in the form of option-lists, as in Extract 8—have been argued
to offer patients more say in treatment decision-making (Chappell et al., 2018; Toerien, 2018).

543
 Kristella Montiegel and Jeffrey Robinson

The example of treatment recommendation actions reminds us that responses/answers are actions,
too, with their own cascading consequences for ensuing interaction. For instance, in the context
of pediatric neurology, Stivers and Timmermans (2020) found that parents’ differential responses to
treatment recommendations embody different types and levels of resistance, which lead providers to
counter with different methods for pursuing their treatment recommendations. For example, one
type of resistance is preference based (i.e., what parents personally want, or feel is best, for their chil-
dren; e.g., anti-medication ideology). As Stivers and Timmermans note, “Clinicians treat this as the
most problematic basis for resistance because it directly contests the deontic and epistemic grounds
of their authority” (p. 5). Providers tend to pursue preference-based resistance (in bold) by pressuring
parents to accept recommendations. We see this in Extract 9, which follows the provider’s recom-
mendation that the child begin taking a second medication:

Extract 9 (adapted from Stivers & Timmermans, 2020, p. 65)

03 MOM: We jus- we wan- we- we ultimately want her medication free.
04 DOC: Okay.
05 MOM: Yeah. #We don’t want to have her live her whole life on
06 prescription drugs.#
   .
   .
   .
07 DOC: The thing is that at [some point (.) <in order to keep her
08 MOM: [(.hhhh hhhhh)
09 DOC: seizure free we might need to like |you know| add -some
10 medication, or something else on top of it_
11    .hh [to make sure we get better control.
12 MOM:    [Yeah.

At lines 7–11, the provider pressures the mother to agree to a second medication “in order to
keep her seizure free” and “to make sure we get better control.”
An alternative type of resistance is experience based (i.e., evidence grounded in parents’ concrete
experiences with their children’s treatment regimens, such as the side effects of medicines or symp-
toms associated with changing dosage levels). Here, “[p]arents adopt a stance that their knowl-
edge should be on par with clinicians in discussing treatment” (p. 12). Providers tend to pursue
­experience-based resistance (in bold) by accommodating (e.g., backing off from original recommenda-
tions, offering concessions, providing alternative treatments). We see this in Extract 10, which fol-
lows the providers’ recommendation to come off of a particular medication (Depakote).

Extract 10 (adapted from Stivers & Timmermans, 2020, p. 72)

01 MOM: Yeah he- Every time that we try to lower the Depakote?
02 DOC: Mm hm.
03 MOM: He has a break through seizure.
04 DOC: Mm:::.=
.
.
.
31 DOC: Uh:m, ’cuz I mean there’s still room to increase the
32 Lamictal? so #n you know that’s (.) Usually like hundred
33 milligram twice a day is kind of like the starting dose?
34 MOM:      Mm hm.

544
 Conversation Analysis

35 DOC: So: we could try to increase it ^further: an’ then try

36 again tuh come off of it.
37 MOM: Okay.

At lines 31–36, the provider backs off of the recommendation to lower the dose of Depakote and
instead recommends increasing the dosage of a medication (Lamictal) that the child is already taking
and tolerating.
The fact that different actions can lead to different reactions that can themselves lead to differ-
ent outcomes complicates the analytic question: What is the appropriate unit of observation (for X
context, Y participants, Z outcome, etc.)? In some cases, it may be a singular action (either that of
providers or patients), but in other cases it may be an action-reaction sequence.

Sequence Organization
CA has demonstrated that there are differences between actions that demand answers and thereby
initiate a sequence of action—such as solicitations of patients’ chief concerns (e.g., “What can I do
for you today?”) and treatment proposals (e.g., “I’d like to put you on a course of Prednisone”)—and
actions that are themselves answers (e.g., the presentation of a concern or acceptance of a proposal).
One of these sequence-organizational differences involves the concept of conditional relevance
(Schegloff, 1968): Initiating actions make accountable the production of particular answers. The pre-
vious section on “action agendas” involved sequence organization insofar as subtly different actions
demand subtly different types of answers. Another example of how conditional relevance can matter
is that answering with something other than, or in addition to, a conditionally relevant answer can
fundamentally change the “meaning” of the answer as an action. This was demonstrated by Stivers’s
(2002) analysis of parents’ responses to pediatricians’ prompts to present children’s chief concerns.
Such prompts make conditionally relevant the presentation of concrete symptoms as somehow being
experienced in the here-and-now (Robinson & Heritage, 2005). This is what happens in Extract 11,
where the parent presents “symptoms only”:

Extract 11 (adapted from Stivers, 2002, p. 305)

01 DOC: And so: do- What’s been bothering her?
02 (0.4)
03 MOM: Uh:m she’s had a cough?, and stuffing- stuffy
04 nose, and then yesterday in the afternoon she
05 started tuh get really goopy eyes,

However, Stivers (2002) noted that parents sometimes additionally present candidate diagnoses,
which are not conditionally relevant, as in Extract 12:

Extract 12 (adapted from Stivers, 2002, pp. 308–309)

01 DOC: ((prompts mom to present concerns))
02 (1.2)
03 MOM: Just (.) I came down with it last Wednesday, so
04 she’s probably had it (0.2)
05 DOC: Uh huh_
06 MOM: (Like) over- four days?
07 (1.0)
08 MOM: An’ she’s been complaining of headaches.
09 (.)

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 Kristella Montiegel and Jeffrey Robinson

10 MOM: So I was thinking she had like uh sinus in[fection=

11 DOC: [.hhh
12 MOM: =er something.=
13 DOC: =Not necessarily:, Thuh basic uh: this is uh virus
14 basically:, an’=uh:. hh (.) thuh headache seems tuh
15 be:=uh (0.5) pretty prominent: part of it at first . . .

Stivers demonstrated that pediatricians perceive parents’ candidate diagnoses as applying pressure
to prescribe antibiotics. This is supported by the fact that the pediatrician responds by disagreeing,
“Not necessarily” (line 13) and then justifies his disagreement by asserting “this is uh virus” (line 13),
which is not effectively treated by antibiotics.
Another sequence-organizational difference involves the concept of preference organization
(for a review, see Pillet-Shore, 2017). In addition to making answers, per se, socially accountable (Rob-
inson, 2016), initiating actions tend to prefer certain types of answers over others. A controlled study
of preference organization was conducted by Heritage et al. (2007). A majority of U.S. adult patients
who visit primary care physicians for acute concerns (e.g., a recent spider bite) also have at least one
more additional, distinct concern (e.g., vaginal dryness). However, these additional concerns com-
monly do not get addressed (Robinson & Heritage, 2016), resulting in patients leaving with “unmet”
concerns. Heritage et al. examined the difference between physicians soliciting additional concerns
with virtually the same turn format (i.e., a positive interrogative that effectively performed the same
action) in two subtly different ways: The question either included the word “any” (Extract 13) or
“some” (Extract 14).

Extract 13 [MC.18]
01 DOC: Is there anything else that you wanted to talk to
02 me about today?
03 PAT: No, that’s it.
04 DOC: Okay.
Extract 14 [MC.14.09]
01 DOC: Are there some other issues you’d like to discuss?
02 PAT: Uhm: I do have some family history things that I
03 wanted to discuss with you too
04 DOC: Oh: okay

Although the action of soliciting medical concerns (i.e., the questions in both Extracts 13 and 14)
prefers the presentation of a concern, research has shown that this preference can be weakened or
strengthened by the inclusion of the words any or some, respectively (Heritage & Robinson, 2011).
Accordingly, Heritage et al. (2007) observed that the any form of the question was less likely to result
in the presentation of additional concerns than the some form. (We comment more on this study later
in the “outcomes” section.)
Another example of preference organization involves the action of recommending a particular
treatment. Although acceptance and rejection are both conditionally relevant answers, acceptance
is preferred over rejection (Koenig, 2011; Stivers, 2005a, 2005b). Preference organization is social
and distinct from the personal or psychological preference of its speaker; in fact, the latter is often
attributed to speakers based on the former. For example, a provider may expect a patient to reject a
particular prescription medication and even have personal reservations about its safety, but the action
of proposing a treatment nonetheless prefers acceptance over rejection (Stivers, 2005a). For example,
in Extract 15, the patient immediately accepts with “Alright.”

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 Conversation Analysis

Extract 15 [adapted from Stivers, 2006, p. 300]

01 DOC: .hh So he needs some antibiotics to treat that,
02 PAT: Alright.

Understanding this preference organization is critical for understanding how providers and
patients manage treatment resistance because any response that does not constitute the preferred
answer of acceptance—such as Okay, Alright, That’s fine, Let’s do it, etc.—communicatively fore-
shadows the dispreferred answer of rejection. Resistance can be passive, in the form of continuers
(Schegloff, 1982), such as Mm hm and Uh huh, stand-alone head nodding, and even small pauses,
or more active in the form of questions (e.g., “What type of cream?”) and explicit rejection (e.g.,
“I don’t want to do that”). Even passive resistance is understood as withholding (full) acceptance
(Koenig, 2011; Stivers, 2005b). For example, see Extract 16:

Extract 16 [adapted from Stivers, 2006, p. 284)

01 DOC: I don’t think you need antibiotics?
02 PAT: Mm hm,
03 DOC: I (didn’t/don’t) see any signs. h indicating (.)
04 ya know- (.) uh: for thuh [antibiotics.
05 PAT: [#huh huh# ((cough))
06 PAT: Hm [kay,
07 DOC: [.hh Uhm you probably need some strong cough
08 medication. . .

In response to the provider’s treatment recommendation at line 1, the patient passively resists with
a continuer (Schegloff, 1982): “Mm hm” (line 2). Evidence for this is that the provider pursues the
exact same recommendation in an evidentially justified manner, shifting from “don’t think” (line 1)
to “(didn’t/don’t) see any signs. h indicating” (lines 3–4). After the patient accepts, “Hm kay,” (line
6), the provider moves on to a new treatment recommendation (lines 7–8).

The Position of Actions Relative to Medical Activities

A defining feature of institutional, as opposed to ordinary, interaction is its organization by the
participants around particular and recurrent goals (Drew & Heritage, 1992). One effect of this goal
orientation is that medical interactions are characteristically structured into standard sets and orders
of goal-organized, task-oriented phases, which comprise larger-scale medical activities. For example,
U.S. primary care visits organized around dealing with acute medical problems (e.g., new rash, new
flu, etc.) are regularly composed of six ordered activities: (1) opening the visit, (2) problem presen-
tation, (3) information gathering (i.e., history taking and physical examination), (4) diagnosis, (5)
treatment, and (6) closing the visit (Robinson, 2003). In many cases, the existence and nature of this
normative activity organization is understood by both providers and patients and provides a type of
context that shapes the understanding of actions throughout interactions.

The Positioning of Soliciting Patients’ Chief Concerns

The activity of opening primary care visits is organized around the goal of soliciting patients’ chief
concerns (Robinson, 1998). Achieving this goal involves the negotiation of a transition, or lack
thereof, from a state of non-co-participation to talking about patients’ concerns. Openings are
constructed through the accomplishment of various tasks (social, interactional, and bureaucratic)
that prepare physicians and patients for dealing competently with patients’ concerns, including

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(1) greeting, (2) embodying readiness, (3) securing patients’ names, (4) retrieving and reviewing
patients’ records, and (5) initiating patients’ concerns (Robinson, 1998). Tasks 1–4 are preparatory
for dealing with patients’ concerns, and openings are normatively organized such that tasks 1–4 are
accomplished before dealing with patients’ concerns (Robinson, 1999). One consequence of this
normative organization is that the exact same physician question can be understood differently by
patients—that is, can accomplish an entirely different action—depending on its positioning within
openings. Take, for example, the question “How are you?” which is extremely common in U.S. and
U.K. visits (Rogers & Todd, 2010). When providers ask “How are you?” before they have accom-
plished opening tasks 1–4, it is not typically understood medically (i.e., as a solicitation of patients’
problems), but rather “socially” (i.e., as a solicitation of patients’ current and general state of being;
Sacks, 1975). This can be seen in Extract 17.

Extract 17 (adapted from Robinson, 1999, pp. 93–94)

01 DOC: Hi.
02 (.)
03 DOC: M[ister Bald]win,
04 PAT: [Hello. ]
05 PAT: Yes.
06 DOC: Hi. I’m doct’r Mulad I’m one o’ thuh interns
07 here?
08 (.)
09 PAT: <Okay,>
10 (1.1)
11 DOC: *How are you today? ((* closes door))
12 PAT: Alright,
13 (1.7)
14 DOC: Okay. So. >Can I ask< you what brings you in
15 today?
16 (.)
17 PAT: Yeah. I have lumps, in my uh breasts:.

After the doctor opens the door, he greets the patient (lines 1–4) and then confirms his name
(lines 3–5). As the doctor introduces himself (lines 6–7), he begins to close the door. The doctor
asks “How are you today?” (line 11) just after closing the door. Although the doctor has greeted
the patient, confirmed the patient’s name, and introduced himself, he is standing across the room
from his desk and chair and thus has not yet embodied readiness to deal with the patient’s concern.
Insofar as the doctor has neither sat down nor read the records, he is not sufficiently prepared to deal
with the patient’s concerns. Note that the patient responds with “Alright,” (line 12), despite the fact
that he is visiting the doctor for potentially cancerous “lumps, in my uh breasts” (line 17). Thus, the
patient orients to the doctor’s “How are you today?” as a request for an evaluation of his current and
general state of being rather than as a solicitation of his medical concerns.
In contrast, when physicians ask the question “How are you?” after they have accomplished tasks 1–4,
it is typically understood medically, as a solicitation of the chief concern. See, for example, Extract 18.

Extract 18 (adapted from Robinson, 1999, pp. 67–68)

01 PAT: ((Knock Knock Knock))
02 DOC: COME IN.
03 (1.7)

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04 DOC: Hello: Come in.

05 (0.6)
06 DOC: Mister Hall?
07 (0.5)
08 PAT: Yes ((gravel voice))
09 (0.2)
10 PAT: Mmhhm ((throat clear))
11 (1.9)
12 DOC: Have a seat
13 (2.4) ((doctor reads records; patient sits down))
14 DOC: I’m doctor Masters[on.
15 PAT:    [.h I believe so.
16 DOC: How are you.
17 PAT: hhhhhh I call down fer some=uh::(m) (0.6)
18 breeth- eh: (musname) tablets: water tablets.

Before the doctor produces “How are you?” (line 16), the patient has entered the room and
sat down (line 13) and the doctor has greeted the patient (line 4), confirmed his name (lines
6–8), read his records (line 13), and introduced himself. When the doctor asks, “How are you,”
he is gazing at the patient. At this point, both the doctor and the patient have performed the
typical preliminary opening actions and thus have sufficiently prepared for dealing with the
patient’s concerns. In sum, due to its positioning within the activity of opening, the exact same
question, “How are you?” accomplishes a completely different action. The distinction between
“How are you?” as, for example, social talk or medical question, is not typically captured by
traditional coding schemata, whose code categories are operationalized largely according to
content alone.

The Positioning of Soliciting Additional Concerns

In U.S. acute care practice, providers tend to perform the action of soliciting patients’ additional
concerns “late” in visits, that is, after the activity of information gathering (e.g., after history taking
and physical examination; Robinson et al., 2016). For example, in Extract 19, the provider solicits
additional concerns after completing the activity of treatment.

Extract 19 (adapted from Robinson et al., 2016, p. 719)

Context: Immediately after provider completes treatment discussion
01 DOC: Any other medical problems?
02 PAT: No.

As occurs in Extract 19, when providers issue this action in this position, patients almost always
refrain from presenting additional concerns (Robinson et al., 2016). One reason for this is that
patients understand that the activity of treatment is preliminary to that of closing the visit, which can
cast the action as perfunctory (Robinson, 2001).
Compared to its late positioning in visits, when providers solicit additional concerns early—
for example, immediately after patients present their chief concerns—patients are more likely
to present additional concerns, as happens in Extract 20. One reason for this is that patients
understand this action as a continuation of the activity of problem solicitation (Robinson &
Heritage, 2005).

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 Kristella Montiegel and Jeffrey Robinson

Extract 20 (adapted from Robinson et al., 2016, p. 719)

Context: Immediately after patient presents chief concern
01 DOC: How are you otherwise? Any other concerns?
02 PAT: I’m doing fine, I had a slight reaction to the flu shot,
03 you know I woke up with kinda sore throat.

In sum, the same action of soliciting patients’ additional concerns, worded in virtually identical
ways (e.g., “Any other [concerns/medical problems]?”), is understood and responded to differently
by patients due to its differential positioning within visits.

The Positioning of Other Actions

Space prevents a complete review of the implications of the positioning of actions within the nor-
mative organization of medical activities for the meaning of such actions (e.g., see Stivers, 2007, re:
diagnostic actions). Whereas the prior two examples involved physician actions, medical activity
structures also affect patients’ actions. For example, previously we reviewed Stivers’s (2002) finding
that, when parents include candidate diagnoses (e.g., “sinus infection”) during the presentation of
their children’s upper-respiratory concerns, parents are understood to be lobbying for antibiotics.
This is largely explained by the fact that the activity of diagnosis, which is normally performed by
providers later during visits, is conducted in the service of treatment (Robinson, 2003), and thus
patients’ “early” self-diagnoses are understood as essentially suggesting possible treatments.

From Interaction to Outcomes

The previous section reviewed some qualitative CA contributions to the study of provider-patient
interaction. These qualitative findings raise three questions: (a) In light of the fact that qualitative
findings are sometimes critiqued as being anecdotal, are the proposed communication process out-
comes of different physician actions supported by quantitative evidence more traditionally valued
for the defense of probabilistic claims? (b) If particular actions, or action-response sequences, can
be translated into communication process variables, are they probabilistically associated with extra-
interactional medical outcomes such as patients’ post-interaction evaluations of providers or medical
intentions? and (c) If the answer to (a) or (b) is “yes,” can CA’s cross-sectional findings be leveraged to
intervene in medical behavior in order to improve health outcomes, for example, by training provid-
ers to perform certain actions with particular formats in particular positions within visits?

Intra- and Extra-Visit Outcomes of Action

Although this chapter has been critical of some coding schemata used to analyze provider-patient
interaction, and although CA is a fundamentally inductive and qualitative method of inquiry, a core
branch of CA—referred to as applied CA (Antaki, 2011)—utilizes cutting-edge, social-scientific
methods of coding/transforming actions into variables in order to perform statistical correlation
and probabilistic modeling (Kendrick, 2017; Robinson, 2007; Stivers, 2015). This transformation
involves sacrificing a measure of CA detail for larger-picture features of interaction that translate
across individual cases, as well as sacrificing some CA methodological and theoretical assumptions
for those of statistical analysis (for examples, see Stivers, 2015; see also Heritage, 2009; Schegloff,
1993). One hallmark of applied CA is that it involves the coding of a limited number of actions (or
sequences of action), which contrasts with early schemata designed for coding every bit of talk dur-
ing healthcare encounters. From a CA perspective, the latter mandates a systematic understanding of
every possible type of medical action, which research has not yet provided us, but is a core goal of

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basic CA in health settings. This applied CA philosophy has informed more contemporary schemata,
such as that by Kravitz et al. (1999), which focuses solely on patient requests (for information and
services), and Street and Millay (2001), which focuses solely on patient participation. The following
subsection reviews some applied CA findings, especially as they relate to data presented in the prior
section.
Heritage and Robinson (2006) found that, when providers solicit patients’ chief medical con-
cerns, compared to closed-ended requests for confirmation (re: Extract 4, above: “You’re having
knee problems since June?”), open-ended solicitations of medical concerns, per se (re: Extract 1:
“What can I do for you today?”) result in patients spending significantly more time presenting their
concerns (e.g., M length = 27.10 sec. vs. M length = 15.72 sec.). Open-ended formats also resulted in
patients presenting significantly more symptoms in their presentations. Finally, open-ended formats
were associated with patients rating providers’ visit communication significantly more positively
upon the completion of visits (e.g., providers’ listening and affective/relational behaviors; Robin-
son & Heritage, 2006).
In a series of studies, Opel and colleagues (2013, 2015, 2018, 2020) found that when pediatri-
cians seek parents’ compliance in terms of vaccinating their children, compared to participatory
formats (see Extract 6: “What’s your plan for today?”), presumptive formats (re: Extract 5: “So he has
some pokes to do today”) result in significantly higher rates of vaccine acceptance. In a longitudinal
study across children’s two-, four-, and six-month visits, Opel et al. (2018) found that repeated use
of a presumptive (vs. participatory) format was associated with children receiving significantly more
immunizations. Opel et al. (2015) did find evidence that parents who received a participatory format
reported significantly higher satisfaction with their visit experience than parents who received a pre-
sumptive format. However, satisfaction scores were extremely high across all patients (i.e., a ceiling
effect), and thus presumptive formats did not appear to generate dissatisfaction, per se.
In the context of neurology, Chappell et al. (2018) found that patients were significantly less likely
to agree with neurologists’ treatment recommendations, or significantly more likely to reject or defer
physicians’ recommendations, when physicians formatted their treatment recommendations as asser-
tions in the form of option-lists (see Extract 8: “For your pain . . . there’re a couple of tablets that we
often use, there’s one called gabapentin”) than when physician recommendations were formatted as
pronouncements (see Extract 7: “I’ll start you on treatment with iron tab supplements”). However,
both neurologists and patients reported (and were more likely to agree), after visits, that significantly
more treatment choice had been offered with option-lists. These findings mirror those of Opel et al.
(2015) insofar as different turn formats can come with a trade-off between treatment adherence and
treatment experience (e.g., visit experience, perception of choice).

Intervening in Medical Action

Heritage et al.’s (2007) study involved 20 physicians across two U.S. states (California and Pennsylva-
nia). After seeing control patients (i.e., before receiving training), physicians watched a five-minute
video that trained them to (a) ask for patients’ chief medical concerns with open-ended solicitations
of concerns, per se (re: Extract 1: “What can I do for you today?”) and (b) solicit additional concerns
with either the preference-weakening any question (i.e., experimental condition 1, re: Extract 13:
“Is there anything else you want to address in the visit today?”) or the preference-strengthening some
question (i.e., experimental condition 2, re: Extract 14: “Is there something else you want to address
in the visit today?”). Before visits, patients completed a questionnaire including an open-ended
question asking them to list their “reasons for seeing the doctor today, including the problems and
concerns you want to talk about with the doctor.” These questions were coded for medical concerns
that patients “wanted” to present, and videotapes of visits were coded for medical concerns that
patients actually presented, allowing Heritage et al. to determine the degree to which patients left

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visits with unmet concerns. Physicians correctly implemented the intervention 75% of the time.
Asking the preference-strengthening some question significantly reduced the incidence of patients
leaving visits with unmet concerns (i.e., by generating more concerns). Key reasons for physicians’
reluctance to solicit additional concerns is that doing so will both increase visit length and encour-
age patients to present concerns that are more appropriately dealt with during a separate visit. To
this point, the some question did not significantly increase visit length or the likelihood of patients
presenting concerns wholly unrelated to those they entered visits wanting to manage. Finally, related
to the prior discussion of how actions are shaped by their positioning within visits, Robinson et al.
(2016) found that, compared to positioning these types of agenda-setting questions at the beginning
of visits (as was the case in Heritage et al., 2007), positioning them at the end of visits significantly
reduced the likelihood of patients responding with additional concerns.
The Dialogue Around Respiratory Illness Treatment (DART) program (Kronman et al., 2020) was
a randomized controlled trial testing a CA-based intervention to reduce antibiotic prescribing gener-
ally and inappropriate antibiotic prescribing specifically. The intervention was received at the clini-
cian level in three modules over an 11-month period and involved evidence-based online tutorials,
webinars, booster video vignette sessions, and individualized antibiotic prescribing feedback reports.
The intervention involved clinicians (1) segueing into treatment by reviewing physical-examination
findings in ways that diagnostically forecasted “no problems” (e.g., “His ears look good and his lungs
sound great, so no ear infection or signs of pneumonia. His nose is pretty congested though and his
throat is a little red, but nothing concerning for strep”; based on the following findings: Hersh et al.,
2013; Shulman et al., 2012), then (2) delivering a two-part treatment recommendation that first ruled
out the need for antibiotics (e.g., “This is just a cold, nothing an antibiotic will touch”) and then
provided actionable treatment steps (e.g., “Raising the head of her bed will help with the drainage
from her nose when she’s sleeping so she won’t cough so much”; based on the following findings:
Mangione-Smith et al., 2006, 2015; Stivers, 2005a), and then (3) providing a contingency plan (e.g.,
“Definitely call me if she starts having high fevers or is having a hard time catching her breath”). In
a sample of more than 70,000 acute-respiratory-tract-infection (ARTI) visits across nine U.S. states,
the DART intervention significantly decreased the overall rate of antibiotic prescribing, as well as the
rate of inappropriate prescribing (e.g., prescribing antibiotics for viral infections).
Opel et al.’s presumptive (vs. participatory) format (re: Extracts 5–6) for soliciting vaccination
compliance was a core part of Dempsey et al.’s (2018) randomized controlled trial testing a commu-
nication intervention designed to increase adolescent uptake and completion of the HPV (human
papillomavirus) vaccination series. Additionally, medical professionals were educated about HPV and
its vaccination, and they were trained to use motivational interviewing with parents who resisted
vaccination in response to the presumptive format. The communication intervention was used by
72.2%–90.0% of medical professionals post-training. Among 43,132 patients at 16 practices (in the
Denver, Colorado, metropolitan area), patients in the intervention arm were significantly more
likely to initiate and complete the HPV vaccination series than patients in the control arm. Opel
et al. (2020) are currently in the third year of a five-year, randomized controlled trial testing a similar
communication intervention designed to increase the overall immunization status of children of
vaccine-hesitant parents in 24 primary care pediatric practices across two U.S. states (Washington
and Colorado). In short, the aforementioned studies have shown that CA-based findings on certain
actions and their particular formats can meaningfully inform healthcare communication interven-
tions designed to improve health outcomes.

Conclusion
The goal of this chapter was to review CA contributions to the field of health communication
generally and specifically to the study of provider-patient interaction. CA demonstrates that medical

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encounters are organized around providers’ and patients’ production and understanding of social
actions. These processes are themselves shaped by interactional forms of context, such as different
elements of sequence organization (e.g., preference organization) and the nature of the larger-scale
medical activities (e.g., problem presentation, history taking, diagnosis, etc.) in which actions are
produced. In contrast to other methods for analyzing provider-patient interaction, such as the use of
pre-existing coding schemata that theoretically and/or deductively presume the existence of specific
social actions and their relevance for participants, CA begins by qualitatively (e.g., naturalistically,
inductively, and context-sensitively) identifying social actions that are meaningful (and how they are
meaningful) for providers and patients. Applied CA then transforms interactional structures with
patterned outcomes into variables that are amenable to quantification toward the goal of associating
them with healthcare outcomes. These interactional structures can be taught to providers and have
been incorporated into randomized controlled trials of healthcare interventions, which have, in
turn, led to positive outcomes.

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 APPENDIX: TRANSCRIPTION
CONVENTIONS

The following transcription conventions are based on and slightly adapted from Jefferson’s (2004)
glossary of transcript symbols. Note that CA transcription often includes non-standard orthography
to capture sounds and utterances as participants actually produce them.

1 Temporal and sequential relationships

[ A left bracket indicates the onset of overlapping speech
] A right bracket indicates the point at which overlapping utterances end = An equals
sign indicates latched speech (no break or gap between talk) (0.5) Silences are indi-
cated as pauses in tenths of a second
(.) A period in parentheses indicates a hearable micropause (less than two tenths of a second)

2 Aspects of speech delivery

. A period indicates a falling intonation contour
, A comma indicates continuing intonation
? A question mark indicates rising intonation contour
_ An underscore indicates a level intonation contour
: Colons indicate lengthening of preceding sound (the more colons, the longer the
lengthening)
ye- A hyphen indicates an abrupt cutoff sound (phonetically, a glottal stop) yes Under-
lining indicates stress or emphasis, by increased amplitude or pitch YES Upper case
letters indicates noticeably louder speech
°yes° The degree sign indicates noticeably quiet or soft speech
^ A caret indicates a sharp rise in pitch
>yes< Indicates talk that is noticeably faster than surrounding talk
<yes> Indicate talk that is noticeably slower than surrounding talk
hh The letter “h” indicates audible aspirations (the more hs the longer the breath)
.hh A period preceding the letter “h” indicates audible inhalations (the more hs
the longer the breath)
y(h)es h within parentheses within a word indicates “laugh-like” sound £yes£ A pound sign
indicates smile voice

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3 Other notational devices

(guess) Words within single parentheses indicate likely hearing of that word
((coughs)) Information in double parentheses indicate the transcriber’s descriptions of events
rather than representations of them
(   ) Empty parentheses indicate hearable yet indecipherable talk

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 37
ADVANCING HEALTH
COMMUNICATION RESEARCH
Issues and Controversies in Research Design and
Data Analysis

Ilona Fridman, Brian G. Southwell, Marco Yzer, and Michael T.

Stephenson

We have seen remarkable growth in the amount of health communication literature. Recent edito-
rial experiences at two of the leading journals in this area—Health Communication and the Journal of
Health Communication—illustrate this point. Health Communication began its run in 1989 with four
issues; the journal now publishes 14 issues and has increased the physical size of the journal so that
more articles can be included in each issue. In 1996, the Journal of Health Communication had only
four issues per volume; now it publishes 12. Despite the increase, acceptance rates have remained
low. At Health Communication, for example, journal staff accept roughly 13% of submissions. More
researchers are attempting to contribute to the health communication literature than in previous
decades and are more likely than ever to label their work as being relevant to “health communica-
tion,” a trend that global health emergencies such as the COVID-19 pandemic will amplify further.
We might expect that new health communication researchers would need only to understand
a limited number of basic research tools to conduct their work; much of the action would be in
subtle advances in theory development. However, the growth in health communication literature
and increasing volume of data attracted the attention of researchers to advanced statistical tools that
provide helpful resources for analysis of complex data but also, frankly, sometimes unhelpful tempta-
tion to apply novel methods without developing theory or planning research questions.
The increasingly complicated array of methods employed by health communication scholars
is not solely a function of researcher effort to be novel, of course. Rather than focusing solely on
“communication” projects, for example, health communication researchers are increasingly working
in interdisciplinary teams, as discussed elsewhere in this volume, which can mean the introduction
of new ways of generating or analyzing data. Health communication researchers and reviewers often
face challenges in keeping up with statistical and methodological innovations that characterize recent
literature. For example, we have recently seen applications of machine learning (e.g., Musaev et al.,
2019) that were not widely used until recently. Statistical advancements have informed new norms
and standards that slowly are being adopted by communication researchers. Consider, for example,
the use of multilevel modeling to evaluate exposure to campaigns and political ideology (Hanitzsch
et al., 2016; Southwell, 2005) or using bootstrap methods for mediation analyses (Hayes, 2017).
Scientific journals, in turn, also are establishing new norms of reporting data to ensure replicability
and transparency of science by asking researchers to pre-register studies and statistical analysis plans
(Munafò et al., 2017), conduct a priori power calculations (Anderson et al., 2017), and report effect

558  DOI: 10.4324/9781003043379-45

 Advancing Health Communication Research

sizes and confidence intervals in addition to statistical significance levels (Schmidt, 2016). All such
innovations are noteworthy for their departure from previous health communication literature, but,
as separate methodological tools and advice, such innovations will only be part of an appropriate
strategy to take health communication research to a higher level if they are paired with our contin-
ued effort to ask the right questions.

Chapter Overview
In this chapter, we interpret health communication as comprising processes through which an indi-
vidual or an audience engages, either directly or indirectly, information that can influence health-
relevant beliefs and behavior, regardless of whether that information was intended to affect health
outcomes. We address four themes that have been of particular importance for health communica-
tion researchers in recent years and that we see as being relevant into the foreseeable future: measure-
ment problems related to key variables, machine learning and natural language processing, issues in
model development and testing, and challenging statistical issues.

Measurement Problems Related to Key Variables

Measurement of many key variables such as information exposure, beliefs, summative perceptions
(such as attitudes and norms), and health-related behavior has been weak historically, thereby limit-
ing the confidence we can have in our conclusions based on the use of such measures to date. What
should be important in any survey of methodological innovations are solutions, or at least discussions
of potential solutions, to such fundamental and ongoing problems of measurement.

Independent Variables Tied to Information Exposure

Health communication research has long been complicated by the elusive nature of information
exposure. We know that measuring exposure is both crucial for evaluation and yet often insuf-
ficiently considered as a source of error and complication in some studies (Hornik, 2002; Slater,
2004). People tend to selectively expose themselves to information (see Kim et al., 2016). In addi-
tion, most self-report measures of exposure are vulnerable to the dynamics of human memory
(Niederdeppe, 2016; Southwell, 2005). As a result, understanding the impact of information on
health behavior or the patterns of information seeking among various groups has often hinged on
our ability to accurately measure and subsequently harness variance in exposure. Insofar as a health
communication research project fails to produce variation in exposure among people, it is challeng-
ing to detect any individual-level project impact (Hornik & Kelly, 2007; Scharkow, 2019). Failing
to measure exposure that actually occurred, moreover, tells us no more about project impact than
instances in which real exposure to materials and messages never happened.
What can be done to improve our study of exposure? One approach to improving assessment of
exposure is to replace the commonly employed method of self-report with a researcher-controlled
approach of randomly assigning people to an exposure or control condition. For example, Kim
et al. (2019) manipulated exposure to one of three different messages about smoking cessation. Such
manipulation of message exposure allowed Kim et al. to demonstrate that smokers who viewed a
tailored message evaluated the message more favorably and had a stronger intention to quit smoking.
Longitudinal designs also provide a useful alternative as they offer within-individual or within-
community variance in exposure over time that can allow one to draw causal inferences without
contriving experimental designs. For example, Yzer et al. (2000) modeled levels of campaign expo-
sure to Dutch STD prevention campaigns and found that the likelihood of engaging in preventive
behavior at the final observation was a function of cumulative and varying exposure to different

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campaigns conducted in preceding years. In another example, Southwell et al. (2018) used a time
series approach to demonstrate the effect of the Ask About Aspirin campaign on patient use of a
heart health information tool online.
Latent growth modeling offers the health communication researcher even more options for lon-
gitudinal analysis. Latent growth modeling is based on the idea that individuals have unique growth
trajectories over time; put differently, how individuals change over time is different for different
people. That change over time matters and is potentially predictable. Latent growth modeling allows
the researcher not only to identify individual growth trajectories but also to explain them as a func-
tion of a set of intra-individual and inter-individual variables, including exposure to health messages
(Duncan & Duncan, 2009; McArdle, 1998).

Validity Issues in Measuring Exposure and Some Creative Solutions

Health researchers are often interested in understanding how messages used in a health intervention
work, and for this purpose, they design exposure measures to discern exposure to and engagement
with the exact health message of interest. However, this practice of focusing on the fact of any expo-
sure to the health messages designed for a campaign or intervention is not always optimal. We know,
after all, that the overall diet of content available over time in the media market in which a person
lives is a crucial, if obvious, predictor of his or her engagement with relevant messages, and those rel-
evant messages include much more than a single instance of exposure to a specific message (South-
well, 2005). Hornik (2002) has explained that evaluations of public health interventions often fail
to demonstrate intervention success not necessarily because exposure measures were flawed, per se,
but because underlying interventions were not able to produce enough additional exposure relative
to the thousands of health-relevant messages people get each day from advertising, entertainment
media, news references, or other personal experience. The issue of an overwhelming information
environment is more pronounced today with the proliferation of social media platforms, which can
flood some individuals with messages varying widely in content, accuracy, and length. Our measure-
ment concern should involve not just the fact of any specific exposure but also the extent of topical
exposure relative to those audiences we want to compare.
Some research has focused on the effects of media information that was not planned for a public
health campaign, per se, such as food advertising and media portrayals of food (e.g., Greenberg et al.,
2009). One possibility for such research efforts is to ask people how often they have seen health-
relevant information in entertainment media, for example. From a measurement validity standpoint,
we should be concerned, however, with the possibility that self-reported exposure to relevant health
information may not accurately reflect information exposure because of memory issues or any num-
ber of other biases.
One approach that recognizes both the reality of complex media diets and the validity concerns
associated with recall exposure measures is to obtain non-self-reported indicators of group exposure
likelihood. Such indicators include gross rating point estimates from advertising buys, television
program audience ratings, and content analysis data. Such data can be used to validate self-reported
measures to generate exposure likelihood estimates for particular groups. Researchers can compare
groups that likely have been more or less exposed to key content.
Some researchers have creatively integrated a subjective assessment of the types of media people
use with an independent, objective assessment of the health-relevant content of those media. In their
study of adolescent exposure to sexual content in media, Pardun et al. (2005) provide a rationale for
such an approach. They argue that whereas self-reported data on exposure to different media use-
fully suggest patterns of adolescent media consumption overall, such frequency usage data are not
optimally informative because they cannot speak to the kind of information to which adolescents
were exposed. These authors have demonstrated instead that weighting media use data with the

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extent to which specific media contained sexual content offers a much more powerful predictor of
sexual behaviors than simple self-reports of either general media use or reported exposure to sexual
content alone. In a similar vein, Mejia et al. (2016) asked adolescents which movies they had seen
and then weighted their responses by objective counts of alcohol references in those movies obtained
in separate content analyses. Such lines of research illustrate how combining media use and media
content data can offer creative solutions to measurement challenges.

Dependent Variables Derived From Critical Health Outcomes

A “gold standard” outcome for many health communication projects is behavior, either in terms of
change or maintenance. At issue often is whether a communication event (e.g., message, nonverbal
behavior, verbal interaction) influenced behavior. Harrison et al. (2010), for example, evaluated how
many individuals registered as organ donors as a result of media exposure. The primary dependent
variable was behavior. Behavioral outcomes are critical because the objective of many health inter-
ventions is to contribute to behavior change, and behavioral responses are arguably the most imme-
diate antecedent of health concerns such as obesity, STDs, and certain forms of cancer.
Despite the clear significance of behavioral outcomes in health communication research, behav-
iors often are not feasible to measure, nor are they always appropriate to measure. Feasibility issues
stem from the necessity of prospective analysis (as behavior effects are lagged relative to their causes)
and also include lack of funding or resources for longitudinal data collection. Similarly, with experi-
mental studies, it sometimes is useful to focus more on the mechanisms that influence variables
earlier in the hierarchy of effects, such as time spent communicating with family or friends (e.g., Ste-
phenson et al., 2009), beliefs, attitudes, efficacy, and behavioral intention (e.g., Sheeran et al., 2016).
Rather than solely focusing on behavior, health communication researchers can consider a hier-
archy of effects. Hierarchy of effects models propose mechanisms by which health information ulti-
mately affects behavior. The idea is that health information does not directly change behavior but
instead changes determinants of behavior, and those, in turn, affect behavior (e.g., Stephenson et al.,
2010, van Koningsbruggen et al., 2018). This approach has implications for methods. For instance,
using HIV programs as an example, Yzer et al. (2008) argued,

behavioral theory informs HIV prevention programs by identifying important predictors

of the relevant behavior. Changes in those predictors brought about by program messages
should theoretically translate into behavior change. Program evaluation, however, may
examine only whether message exposure is associated with behavior change, assuming that
if people changed their behavior, the intervention must have effectively changed the deter-
minants. This practice obscures how intervention programs work in the field.
(p. 456)

Yzer et al. (2008) reanalyzed condom use data from the AIDS Community Demonstration Pro-
jects and showed that program effects on condom use, which had previously been published as
the sole dependent variable, could, in fact, be explained by program effects on self-efficacy. Such
explanatory findings are much more meaningful if we are to advance our understanding of how com-
munication programs work, not just the conclusion that they work.
Understanding communication processes requires an examination of both behavioral antecedents
and actual behavior. A singular focus on behavioral determinants is not very helpful in examining
communication processes. Using intention-behavior models as an example, it is not good enough
to argue that tests of communication processes insofar as they affect intention are sufficient because
intention should lead to behavior at some point. Although we readily acknowledge the budget,
time, and other resource constraints encountered by many researchers, claims about communication

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effects on health behavior are most convincing when based on prospective study designs. This does
not mean that cross-sectional analysis is not useful but rather serves to remind us to take seriously the
limitations of our conclusions based on cross-sectional work.
A second issue related to dependent variables in health communication research pertains to con-
struct validity. Although we teach our students to consider construct validity, the literature gives
good reason to repeat here a call to consider whether the dependent measure is a valid indicator of
the concept of interest. For instance, in a review of the perceived message effectiveness literature,
Yzer et al. (2015) found that the operationalization of perceived effectiveness widely varies among
studies. When there is no consensus on valid measures of a concept (because rigorous validation
work has not been done), the choice for operationalization of that concept should be explicitly justi-
fied theoretically. Nonetheless, relevant work published in health communication journals typically
does not include those arguments.
Meta-analysis is potentially useful for measure validation, especially in terms of predictive validity.
If a variable is theorized to predict another, and if across many studies that variable, in fact, is associ-
ated with the criterion variable, even though the predictor variable was operationalized in different
ways, then one could argue that different operationalizations tap the same construct. We offer two
cautionary notes, however. First, because meta-analysis is a method of weighed averages, an analysis
across all available studies can obscure meaningful differences between studies. It is possible that
meta-analytic research that examines predictor-criterion associations for different operationalizations
finds that some operationalizations work better than others, suggesting that not all operationaliza-
tions perform equally well. Second, just as a high reliability coefficient does not mean that we are
necessarily measuring what we think we are measuring, an association between two different sets
of measures is not enough to conclude that we are actually measuring the construct of interest in
either case.

Machine Learning and Natural Language Processing Methods

Recent advances in online communication have resulted in new opportunities for textual data analy-
sis. Behavioral researchers and computer scientists together have developed tools of machine learning
relevant to the advancement of health communication research, including natural language process-
ing (NLP), to collect, organize, and interpret textual communication. These tools allow researchers
to explore large sets of data, test theoretical assumptions within and across populations, and improve
the generalizability of the findings. In communication science, machine learning approaches now
have been used to collect data (Marres & Weltevrede, 2013), examine public perceptions (Surian
et al., 2016), evaluate health communication campaigns (Ayers et al., 2016), and track health condi-
tions and behaviors (Meng, 2016).
In this section, we provide an overview of machine learning approaches that could help in the
analysis of health messages and health communication. In the current discussion, we focus on the
three categories of machine learning tools: rule-based approaches, classification, and topic modeling.
Rule-based approaches are the most intuitive method of text analysis as the typical outcome
has face validity and is transparent for researchers and reviewers. In such work, a theoretical con-
struct is operationalized through a dictionary of words related to the construct. This approach offers
measurement transparency in the sense that the dictionary spells out the operationalization of the
construct. Construct measurement can be based on the frequency of words from the dictionary in a
given communication. This approach can test hypotheses or explore predefined concepts in one or
more sources of textual data. However, it is also possible to use this approach in an exploratory way
to identify and collect data about a targeted concept.
In one example, Kelly et al. (2014) used a rule-based approach to measure the impact of patients’
exposure to emotional versus cognitive explanations in clinical conversations. Analyzing genetic

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consultations related to BRCA (BReast CAncer gene), the researchers counted words associated
with emotions and words associated with cognition in healthcare provider explanations. Their analy-
sis showed that emotional words were associated with higher patient distress, whereas words related
to cognition were associated with lower patient distress.
In another study, Faasse et al. (2016) identified pro-vaccine comments and anti-vaccine com-
ments on Facebook. Using a rule-based approach, they calculated the frequency of words related
to analytical thinking, emotions, health, social relationships, and family. Unexpectedly, they found
that the anti-vaccination group used words associated with analytical thinking and health, whereas
the pro-vaccination group more often used words related to anxiety and family. These findings
highlighted pro- and anti-vaccine groups’ primary concerns, suggesting insights for future targeted
interventions.
Just as rule-based approaches do, classification models require researchers to define the con-
struct, attitudes, or behaviors that they aim to investigate. Unlike rule-based approaches, how-
ever, classification approaches do not require researchers to operationalize the constructs explicitly
before a study begins. Instead, a classification algorithm can learn from a small subset of pre-
labeled data. A main advantage of the classification method is scalability. After coding a small
subset of data, researchers could easily sort a large corpus of data in pre-labeled bins with relatively
high accuracy, and in some cases, the size of that corpus is bigger than a human coder alone could
handle easily.
Classification algorithms often attract the attention of communication researchers because of the
opportunity and dilemma of large datasets of text. For instance, examining Twitter data, Murphy
et al. (2019) used a classification algorithm to measure both exposure to e-cigarette information
and attitudes toward e-cigarettes. The results suggested that the percentage of e-cigarette marketers
among participants’ friends was associated with expressed positive attitude toward e-cigarettes.
Another approach, topic modeling, allows researchers to detect topics (themes) and identify the
thematic structure of multiple text documents. One of the most popular algorithms for doing so
is Latent Dirichlet Allocation (Blei, 2012). The core assumptions of topic modeling are that each
document consists of multiple topics and each word in each document is drawn from a specific topic.
Unlike classification, topic modeling does not require researchers to identify categories, but rather
the algorithm recognizes existing patterns in the data by exploring word co-occurrence in multiple
documents. The words that occur together or close to each other in multiple documents are grouped
into a topic (Blei et al., 2003).
Researchers can use topic modeling approaches when annotating textual data that could be
costly to process otherwise due to volume or time or resource constraints. Health communication
researchers have used this approach to measure exposure to specific themes in a campaign, identify
the content of health messages, and explore themes in social interactions. For instance, Hariman
et al. (2018) used topic modeling to explore the coverage of cancer in news reported by The New
York Times since 1970. The analysis showed that topics related to breast cancer appeared more often
than topics related to other types of cancer. Such work allows researchers to report observational
statistics and test hypotheses. For instance, researchers can map topic appearance in the document on
a timeline, noticing when certain topics have a higher probability of occurring.
Another opportunity is to link topic modeling data to other variables. Dunn et al. (2017) col-
lected tweets related to the human papillomavirus vaccine (HPV) and used topic modeling to iden-
tify what themes appeared in these tweets. They then collected data about the geographic location of
individuals from Twitter profiles and the overall uptake of the HPV vaccine in each state. The results
suggested a negative association between HPV vaccine uptake in states and exposure to tweets that
contained safety concerns, misinformation, and conspiracies.
Rule-based approaches, classification, and topic modeling examples demonstrate the robust
potential of machine learning and natural text processing for analysis of large volume user-generated

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data. One important advantage of machine learning is that it has the potential to extend health com-
munication research beyond exploring messages and behaviors of individuals and investigate behav-
iors of groups and populations (Rains, 2020). Analysis of social networks such as Twitter provides
an opportunity to explore how people perceive and articulate health information and how their
articulations influence others.
Furthermore, the methods of machine learning are scalable and efficient. In a comparative analy-
sis between qualitative manual coding and topic modeling, Bright and O’Connor (2007) found that
whereas ten coders spent 30 to 40 hours searching themes in 200 open-ended responses, a computer
algorithm detected themes in several seconds with comparable quality. Additionally, once developed,
machine learning algorithms could be applied to different sets of data from different sources. That, in
turn, increases the replicability and generalizability of health communication research.
Researchers also could utilize machine learning algorithms to link health communication
and behavior. For instance, Huang et al. (2019) found a correlation between individuals tweet-
ing about the flu vaccine and CDC data on vaccine uptake. Another team of researchers linked
obesity and individuals’ Twitter communication by showing that people who lived in an area
in which more happy and physical activity–related tweets are communicated had lower obesity
prevalence (Nguyen et al., 2017). These examples illustrate that researchers could use novel
machine learning approaches to explore how communication is related to disease prevalence and
health behavior.
Although attractive, machine learning approaches also can lead to deceptive results. Advanced
methodological approaches are not a substitute for a well-defined research question and theory.
Machine learning approaches do not eliminate method validity concerns, nor do they eliminate
the need for careful interpretation of results. Interesting but theory-blind findings discovered with
advanced methods might not be easily generalizable across tasks or populations (Iliev et al., 2015).
For instance, Diermeier and colleagues (2011) identified political affiliations with accuracy up to
92% using a classification algorithm. However, in this sample, they found that some unexpected
words such as “catfish” and “grazing” strongly predicted conservatism, whereas words “fishery” and
“lake” predicted liberalism. These results pose a theoretical and practical challenge as they are dif-
ficult to interpret or generalize.
Another problem with machine learning approaches is that data might contain systematic errors
that are not easily identifiable by exploring or visualizing them (in part because of the volume of
data). For instance, Olson and colleagues (2013) have suggested that some use of algorithms to pre-
dict location and magnitude of influenza outbreaks using Google search queries has led to incorrect
predictions that occurred because algorithms did not account for seasonality, geographical hetero-
geneity, and age distribution of those who generated the search queries. Data might overrepresent
some populations sometimes while underrepresenting others, and that may not be obvious to manu-
script reviewers.
When collecting textual data, researchers need to be aware that textual data often reflect everyday
human culture, including embedded stereotypes in discourse, meaning that identified patterns might
not reflect ethical or normative considerations of what to do about those patterns. To address this
problem, researchers can recruit multidisciplinary teams or validate different stages of the project
with people who contributed to creating the data, those who work in relevant domains, and those
who plan to use the results of the study.
Although more advanced algorithms are still needed to allow researchers to explore and docu-
ment “nontransparent” parts of analyses, researchers can take certain steps now. For instance, detailed
annotation of data collection and analysis, careful data exploration (and explanation to reviewers),
and visualization of the data when possible could reduce the problem of nontransparency. Despite
existing challenges, machine learning approaches offer convenient methods to process large datasets
and potentially to build theory with new and valuable evidence.

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Issues in Model Development and Testing

Communication as a Process
The sheer novelty of new methods in communication research can obscure the original question and
draw the attention of investigators away from providing a theoretical foundation for their findings.
Identifying interesting associations in data is only a part of research; true theoretical contributions
require establishing antecedents and causes of these observations.
Stephenson et al. (2006) argued that because communication is inherently a process, we should
note that there are antecedents to any instance of communication, as well as outcomes that should
follow communication, and we should model the phenomenon as a sequence of events. How people
read, interpret, comprehend, and then act after receiving messages are essential parts of the process
of human communication. For example, Stephenson (2003) argued that an antecedent variable called
sensation seeking would subsequently influence the way individuals responded to anti-marijuana
television ads. In turn, the cognitive and emotional responses to this communication would subse-
quently influence their attitudes toward marijuana. Despite having cross-sectional data, the researcher
ensured that this assumed process—that need for sensation would influence the way the individuals
responded cognitively and affectively to the ad, and those responses, in turn, would influence anti-
marijuana attitudes—was reflected in the analysis. He designed two structural equation models for
high sensation seekers and low sensation seekers exploring paths to different antecedents of mari-
juana attitudes. Future work could challenge these assumptions empirically; nonetheless, the key is
that researchers tested formally articulated assumptions about processes.

Communication as Mediated
If we think of communication as a process, then communication involves multiple variables and
method decisions are critical to assess how those variables are related in sequence. For example, if a
message is designed to elicit a set of processes that culminate in a specified outcome, measurement of
these constructs must occur in a fashion that is consistent with the process. Careful methodological
choices are a necessity.
A study intended to capture a process of exposure and effect often must be designed in a way that
antecedent variables are assessed before outcome variables. For example, we may be interested in
whether an evaluation of a health message informs attitudes toward a particular health behavior. For
this purpose, we could show the health message and then ask about viewers’ response to the message,
followed by questions about attitudes toward the particular health behavior addressed in the message.
The sequence of questions is meaningful.
Researchers have debated the research approach that optimally assesses mediation. For instance,
cross-sectional surveys measure antecedent variables and outcome variables essentially at the same
time. This approach does not allow researchers to distinguish completely whether a mediator causes
changes in the outcome or vice versa based on the time order of data collection (Maxwell et al.,
2011). Experimental or longitudinal approaches could complement cross-sectional surveys to estab-
lish causal relationships between variables.
Also, data collection may need to occur at multiple levels. (See also later discussion of multilevel
modeling as an analysis consideration.) Hannawa (2009) described a three-step model illustrating
how physicians disclosed mistakes. The exogenous variable, physician defensiveness, was negatively
related to the physician’s disclosure competence, which, in turn, influenced beneficial outcomes for
both the physician and the patient. Hannawa noted that in this case physician defensiveness could be
measured at an individual level, whereas the outcome variables should be evaluated at a dyadic level
and should integrate the patient’s reactions.

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Interpretation of communication as a process also should have consequences for analytical

choices. For example, a media health message might not directly change behavior, but it might
do so indirectly by first affecting beliefs about the message, which later should affect beliefs about
the particular health behavior. Change in those health behavior beliefs could change behavior.
The theorized process in this example is one of the mediated effects. Therefore, an analysis that
examines the simultaneous direct effects of message exposure on beliefs about the message, beliefs
about the health behavior, and the health behavior itself does not match with our theorized idea
of mediated effects because it assumes that message exposure affects all three dependent variables
directly.

Multiple Regression, Structural Equation Models, Time Series Analysis,

and Multilevel Models
There are at least two ways to assess the overall picture of relationships between a set of variables
at once (Stephenson et al., 2006). We can examine relationships between multiple variables of
interest through path analysis via ordinary least squares regression or through structural equation
modeling, which uses a host of estimators, the most common being maximum likelihood. Prior
to the availability of user-friendly structural equation modeling (SEM) software, regression-based
path analysis was (and still is) an accepted approach to analyzing systems of equations. Depending
upon the complexity of the model, a path analysis involves running regression analyses for each
dependent variable in the model. Most researchers stop after running the regression equations,
although the next appropriate step would be to compare the predicted regression coefficients to
the observed correlation matrix to determine the fit of the model. In contrast, SEM examines
the entire system of equations simultaneously. Because SEM is based on covariances and not cor-
relations, as well as different estimators, SEM programs can be utilized to determine the fit of
the model.
Increasingly, health communication scholars are recognizing a time period as a unit of analysis
and looking at longitudinal changes in beliefs and behaviors related to health as a function of avail-
able media content and campaign efforts. Instead of associating individual-level variables in cross-
sectional fashion, some researchers have successfully demonstrated how we look at trends in media
content and relate them to trends in relevant beliefs or behaviors. This move resonates with much
of our discussion thus far, as it often allows for adequate variation in exposure and reflects com-
munication dynamics as part of an unfolding process. The disadvantages of this approach include
the need to aggregate data to produce data points for each time period and the difficulty of finding
appropriate longitudinal data stretching back in time. Successful studies that have adopted a time
series approach have to assess outcomes such as the predictive ability of media content trends in
explaining outcomes such as marijuana abstinence (Stryker, 2003), using an online program pro-
moting physical activity (Van’t Riet et al., 2010), and searches for Zika virus information (South-
well et al., 2016).
Our discussion of new methodological directions would not be complete without further
comment on multilevel modeling. Southwell (2005) has argued for the specific theoretical
utility of multilevel modeling for communication research, noting that many of our conceptu-
alizations of media effects implicitly or explicitly involve more than simple bivariate relation-
ships at one level of analysis and often suggest cross-level interactions. Multilevel models allow
the simultaneous estimation of equations at different levels of analysis in a way that permits
­variance in a key outcome to be a function of both macro- and micro-level predictors that can
interact.

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Additional Statistical Challenges

Missing Data
Inevitably, data will be missing from some participants or entities, especially with the growth of
machine learning methods that allow researchers to engage in data mining of massive datasets. While
striving for data completeness, accuracy, and integrity, researchers have to deal with various mistakes,
including missing information. The question, then, is how to handle this issue.
Quantitative researchers tend to avoid mentioning missing data or deal with it using simple list-
wise deletion, pairwise deletion, or single imputation procedures. However, such approaches are
undesirable because using them changes the statistical properties of the data (Dong & Peng, 2013;
Harel et al., 2008). List-wise deletion is simply omitting the cases for all analyses if any of the vari-
ables contain missing data. Pairwise deletion is similar, but data cases are deleted only for the analysis
that includes variables with missing data. The problem is that the researcher has different sets of
data for each analysis. One single imputation approach, called mean substitution, occurs when the
researcher computes the mean value of the variable and replaces all the missing values with the mean.
A second single imputation procedure, similar to the first, is to use a regression-based approach to
estimate the missing value and then replace the missing value with the estimate obtained from the
regression analysis.
Given the limitations of the solutions described earlier, researchers have designed multiple impu-
tation (MI) procedures that replace missing values without compromising the statistical properties of
the datasets. Several MI procedures are available, including k-nearest neighbor (Beretta et al., 2016),
random forest (Tang, & Ishwaran, 2017), and multiple imputations with chain equations (MICE) in
R (He et al., 2010). These solutions deal well with complex datasets and non-normally distributed
variables. Software for multiple imputations is available in SAS and MATLAB; additionally, research-
ers can download free packages for R.

Nonlinear Relationships
Many health communication researchers continue to rely on linear statistics when nonlinear rela-
tionships and non-normal distributions are theoretically relevant and present in the data. A mani-
festation of this tendency is the use of simple linear correlations when curvilinear relationships are
theoretically possible and important to assess. Consider the relationship of fear induced by a mes-
sage and subsequent protective responses. Initial research suggested a linear relationship in which
increased fear was associated with weaker protective responses (Janis & Feshbach, 1953). Other
results suggested a positive relationship, however, such that increased fear produced consistent gains
in protective responses (Leventhal & Watts, 1966). In light of these results, the older view was sub-
sequently replaced by a curvilinear interpretation in which increased fear produces healthy responses
up to the point at which fear becomes too strong, after which we should see decreasing protective
responses (Janis, 1967). Using linear statistics alone to test such relationships would overlook this
theoretical nuance.
Another related problem is a tendency to overlook the distribution of dependent variables and the
potential for violating assumptions of normality. We have seen the widespread adoption of logistic
regression to address instances of dichotomous outcome variables. Less prevalent is the acknowledg-
ment of issues associated with relatively rare outcomes and the problems of zero-clustered data. Con-
sider, for example, family conversations about relatively rare health topics, such as indoor tanning
(Friedenberg et al., 2009). For these instances, researchers can use models that allow zero-clustered

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dependent variables, such as Tobit regression. If researchers would like to measure the frequency of
the conversations about indoor tanning among multiple families, they will likely have a dependent
variable with a few counts and a substantial number of zeros, which indicate the absence of such dis-
cussions. Tobit regression is more appropriate for zero-clustered data as described earlier than OLS
regression (e.g., Shen & Dillard, 2009).
Recent advances in machine learning help to address nonlinearity and interactions in data from
a different perspective. For instance, classification algorithms based on decision tree mathematics
allow researchers to analyze multiple parameters that have various distributions, accounting for the
interactions between parameters (e.g., Wang et al., 2019). Therefore, machine learning approaches
often require researchers to have advanced programming skills and have large sets of data available
for analysis and validation.

Concluding Thoughts
In an increasingly crowded arena of published research, new methods offer a way of making one’s
research stand out. Embracing methods simply because they are trendy, however, can distract schol-
ars from fundamental theoretical considerations and potentially even mask the original research
question. We sometimes do not explicitly ask, “What is the question we want to answer with this
research?”
We have reviewed a series of method-related challenges that have faced health communication
scholars. Some published work suffers from these limitations, whereas other recent pieces have
shown useful paths forward. The most useful work, in our estimation, has applied statistical models
that match the explicit or implied theoretical propositions in question, acknowledge that communi-
cation is a process that unfolds over time, and reflect the fact that there are important questions to be
asked at different levels of analysis using different units of analysis. Ideally, the method section in our
papers should be compelling to read and should generate research questions and theoretical debate
rather than simply being a mundane recitation of details.
Consider a spontaneous drive without a roadmap: It may be fun or stimulating, but we do not
really know where we are headed or, perhaps, how eventually to replicate the journey. Theory
should be our hypothetical map. Methods and statistical procedures, such as those we describe in
this chapter, can be our new telescopes and compasses to explore the terrain of communication and
health in the 21st century. They are inordinately useful devices but also harbor utility that depends
on what it is one wants to measure and analyze.
Our next steps to advance health communication research through new methods need to be
driven by theoretical priorities. Whereas the premise that theoretical questions are the basis of,
and therefore should precede, methodological considerations is by no means new, a tendency for
researchers to simply employ known and preferred techniques persists, driven in part by some
pressures to generate output for publication rather than collaborative effort to answer important
questions. As a result, crucial health communication questions may remain untapped as we churn
out papers that tell the same story while making only modest new contributions. Methodological
advancement alone will not lead to advanced understanding of questions pertinent to health com-
munication if innovative conceptual ideas do not come first.

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 38
HEALTH COMMUNICATION
RESEARCH AND PRACTICE AT
THE LEVEL OF GOVERNMENT,
FOUNDATIONS, PUBLIC POLICY,
AND NGOS1
Bradford W. Hesse

In an invited commentary, Barbara Rimer, dean of the School of Public Health at the University
of North Carolina at Chapel Hill, characterized public service as having “the power to transform”
(Rimer, 2016, p. 2). As she put it, “the concerted, strategic efforts of government leaders can create
rapid accelerations in knowledge and the application of that knowledge for public good” (Rimer,
2016, p. 1). Her words are especially poignant for researchers and practitioners of health commu-
nication, who remember well the ongoing battle between science and private-interest marketing
that has surrounded one of the biggest public health challenges of the last century: the challenge of
reducing addiction to tobacco.
In 1964, just after publication of the U.S. Surgeon General’s report documenting a linkage
between smoking and fatal chronic disease of the lung and heart (U.S. Department of Health, Edu-
cation, and Welfare, 1964), roughly 44% of the adult population reported smoking on a daily basis
(U.S. Department of Health and Human Services [DHHS], 2014). That number had declined to
roughly 20% of the adult population by 2008 after years of public health communication efforts, and
then it fell even more dramatically as the Food and Drug Administration exercised its newly appro-
priated authority in regulating tobacco (Cole & Fiore, 2014). After a renewed period of accelerated
decline, the national adult smoking rate fell to a low of 15.3% by 2015 (Fiore, 2016). According to
the U.S. Surgeon General, however, tobacco use remains as the leading preventable cause of death
in the United States (U.S. DHHS, 2014). Nevertheless, the transformative work initiated by fund-
ing and policy efforts related to health communication led to a documented decrease in preventable
deaths from tobacco over the course of several decades (NCI, 2008). Observations such as these
would prompt leaders at the National Institutes of Health (NIH) to recognize that an “extraordinary
opportunity” (NCI, 2001, p. 37) existed in utilizing the science of health communication to achieve
national goals in mortality reduction (Kreps & Viswanath, 2001).

An Extraordinary Opportunity in Health Communication

Rimer was especially well-suited to offer comments on the role of government and public sec-
tor foundations to transform the public health enterprise. She was called into public service by
the director of the National Cancer Institute (NCI), the largest institute within the NIH, in the

572  DOI: 10.4324/9781003043379-46

 Health Communication Research and Practice

mid-1990s to establish a new organizational entity focused on cancer control and population sci-
ences. As an arm for basic scientific research within the federal pantheon, the newly formed NCI
division was intended to complement—and work with—the broad surveillance and disease control
arms of the Centers for Disease Control and Prevention (CDC). The story of how Rimer was sum-
moned into public service, and the platform she established to reduce disease burden through health
communication research, offers a valuable lesson to anyone wishing to leverage the bully pulpit of
the federal government or nongovernmental organizations (NGOs) to effect lasting change.
To understand the context in which Rimer was pressed into service, it is worthwhile to note that
although the National Cancer Act was passed in 1971 to accelerate progress against one of the big-
gest killers of the 20th century (The National Cancer Act, 1971), the number of age-adjusted deaths
attributable to the disease continued to rise up until the early 1990s. Throughout the latter part of
the 20th century, the so-called war against cancer seemed unwinnable (Whelan & Cunningham,
2020). Then, in the early 1990s, epidemiologists began to notice an asymptote in mortality statistics
attributable in large part to declines in lung and bronchus cancers. These declines are particularly
noticeable in the national statistics compiled annually by the American Cancer Society (ACS) and
as portrayed in Figure 38.1 (ACS, 2020). (Note that the statistics in Figure 38.1 have been compiled
for males, who have historically reported higher smoking rates than females; the chart for females
over the same time period shows an attenuated, though similar, curve.) What is important to recog-
nize is that this decline in cancer deaths represented an echo effect from the relentless public health
efforts aimed at reducing exposure to the carcinogens in tobacco smoke. Health communication and
the behavioral sciences played crucial roles as companions to the more basic biological sciences to
achieve this population.
Lung and bronchus cancers accounted for a lion’s share of cancer deaths in 2020, with 135,720
deaths anticipated from these sites over the course of the year (ACS, 2020). Still, tobacco control
is not the only area in which work in health communication can yield impact at the national level.
According to projections for 2020, the next most frequently occurring cancer sites resulting in
mortality are the colon (53,200), pancreas (47,050), breast (42,690), and prostate (33,330). Of these,
mortality rates for colon, breast, and prostate cancers can be reduced substantially through screening
tests. Promoting compliance with screening recommendations requires effective health communica-
tion efforts (Zapka et al., 2004); in fact, screening has been the target of cancer awareness efforts over
the past several decades through campaigns supported by the ACS, the Susan G. Komen Foundation,

Decreases with Health

100 Communication Implications

Lung & bronchus

Rate per 100,000 male population

80
Government Oversight of Food &
Water Supply

60

Prostate
Stomach Colon & rectum
40

20
Liver† Pancreas†

Leukemia
0
1930 1935 1940 1945 1950 1955 1960 1965 1970 1975 1980 1985 1990 1995 2000 2005 2010 2015

Figure 38.1 Trends in age-adjusted cancer death rates by site, males, U.S., 1930–2017 outcome (NCI, 2008)

573
 Bradford W. Hesse

and others. Indeed, the unprecedented influence that television journalist Katie Couric had on
screening rates for colon cancer in the 1990s warranted its own statistical mention by epidemiologists
as the “Katie Couric effect” (Cram et al., 2003).
There was another reason NCI leadership was considering the role of communication in cancer
control and prevention. By the mid-1990s, investments by the National Science Foundation into
the technologies comprising the much-anticipated “information superhighway” were producing
a surge of speculative investment in the World Wide Web (Eng & Gustafson, 1999; Kreps, 2002).
Early research by communication scientists suggested that almost half of online search queries could
be traced to health and medical topics (Rice & Katz, 2001). Similarly, program evaluations for the
CDC revealed that—contrary to managers’ expectations—up to 66% of the visits to the agency’s
newly launched website came directly from the general public and not just from health professionals
(Hesse et al., 2002). Anecdotally, oncologists were encountering patients who came to their clini-
cal appointments “armed with printouts from the web” before discussing treatment plans for their
own diagnosed cancers (NCI, 2000). Barbara Rimer’s own research highlighted the importance
that online message boards and discussion groups were having in providing social support for cancer
patients and their families (Meier et al., 2007; Rimer et al., 2005).
It was in this context that the NCI director recruited Barbara Rimer—someone with a strong
reputation for applying behavioral theory to the objective of achieving population health gains (e.g.,
Glanz et al., 2015)—to head up the newly formed Division of Cancer Control and Population Sci-
ences. Within the division, Rimer created a research program dedicated to behavioral research, and
within that program she commissioned a branch to lead the charge in health communication and
informatics research (Hesse, 2009; Klein et al., 2014). The NCI leadership reinforced these decisions
by declaring in its annual bypass budget to the president of the United States that an “extraordinary
opportunity” existed for investing in health communication research to reduce the nation’s cancer
burden. The preamble to the budget is included in the accompanying text box.

Few health-related interventions have the potential of interactive health communications to improve health outcomes,
decrease costs, and enhance consumer satisfaction. Indeed, effective communication is central to cancer care, from pri-
mary prevention to survivorship. Today, we are in the midst of a communications revolution. Experts are producing
increasingly refined approaches to health communications, and changes in the role and accessibility of information are
altering health care practices, patient-physician relationships, and the way consumers acquire and use information.
We need to refine and apply these advances to improve outcomes in cancer prevention, early detection, treatment, and
survivorship.
(NCI, 2001, pp. 8–9)

Establishing a Platform for Impact

As Rimer took the reins of the newly formed Division of Cancer Control and Population Sci-
ences, she looked to the experience of other government entities, foundations, and NGOs for
guidance on how best to organize for impact. The model she and her co-director, Robert Hiatt,
arrived at was borrowed from the National Cancer Institute of Canada (Advisory Committee on
Cancer Control [National Cancer Institute of Canada], 1994). What is important to recognize is
that the raison d’etre for most governmental and nongovernmental public service organizations is
to achieve a commonly recognized, mission-critical goal. In the case of the NCI, the common
objective was to reduce cancer burden across the nation as measured by personal, economic, and
community metrics. This was the overriding objective of the Canadian framework. To achieve

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that objective, the model required constituent investments in fundamental research, intervention
research, surveillance, and program delivery (often referred to as “implementation”). It would
then be incumbent on program administrators within the organization working in tandem with
grantees, the public, and extramural scientists/practitioners to synthesize findings and circulate
knowledge from across these investments. Synchronized accordingly, the organizational entity
adopting the model could begin to achieve the transformational momentum needed to create
impact (Hiatt & Rimer, 1999).
The utility of the framework is that it can be applied across many context areas and levels of con-
sideration. At its broadest level, any government entity wishing to reduce the impact of a targeted
disease would need to set aside funds for conducting fundamental research in the basic biomedical
sciences to create the knowledge base needed for generating efficacious therapies. An intervention
pipeline would then be needed to hone the therapeutics resulting from this scientific understand-
ing through clinical trials. The trials would begin with randomized controlled demonstrations of
efficacy, move to trial-based evaluations of safety, and then advance to post-market surveillance once
the therapeutic is available to the public. To know whether the interventions were working in the
aggregate, a surveillance arm would be needed to gauge effectiveness of public health efforts to
reduce burden and to identify targets for further interventions. Public health programs would need
to be ramped up to ensure that evidence-based approaches were replicated equitably and reliably.
Reliable clearinghouses would be needed to synthesize knowledge and mete out reliable conclusions
to professionals and the public in a coordinated effort to reduce the burden of a particular disease
or health condition. Ideally, health communication specialists would work hand-in-hand with the
programs established to operationalize recommendations from the clearinghouse to ensure that all
parties had a reliable representation of the risks posed by a particular disease and a clear course of
action to reduce that risk.
In this broadest sense of the framework, health communication can be considered from the
perspective of an allied discipline that is needed to ensure a reliable translation of basic biomedical
science into broad public impact. Rimer and her colleagues noted that with the promise of digital
media, the field would be in a position to accelerate its efforts in producing sustainable interventions
of its own. Accordingly, these early government leaders set out to establish a catalytic program for
cancer communication research by (a) promoting transdisciplinarity and comprehensiveness within
the field, (b) nurturing a robust portfolio of investigator-initiated research, (c) engaging in active sur-
veillance research on targets of importance in cancer communication, and (d) promoting improved
knowledge synthesis and dissemination capabilities. Each of these objectives, and the actions gener-
ated to realize them, will be explored next.

Promoting Transdisciplinarity and Comprehensiveness

The National Cancer Act of 1971 § 408 authorized the NCI to establish national cancer research
and demonstration centers as a way of linking together the elements of high-quality science, inter-
vention development, surveillance, and clinical program development. The spirit of the legislation
was embodied within the NCI’s prestigious Comprehensive Cancer Centers Program, which uses an
NIH P-30 (Cancer Centers Grant) mechanism to encourage scientists and doctors to work together
synergistically. Grantees funded through the P-30 mechanism conduct basic laboratory research;
they investigate interventions through clinical trials; and they work collectively to study the patterns,
causes, and control of cancer across populations. Many health communication scientists gained fund-
ing through the program’s requirement for comprehensive centers to engage in community outreach
and to take responsibility for prevention efforts within the centers’ catchment areas. Health com-
munication was seen as an interdisciplinary requirement for attaining comprehensive status among
the most prestigious institutions in the NCI grantee network.

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To be sure, Barbara Rimer and many of the highly accomplished scientists she recruited to join
NCI’s newly formed Division of Cancer Control and Population Sciences came to the institute
with this interdisciplinary background; that is, they operated within the sphere of public health
and population science alongside clinical staff and basic biological researchers. One of the first
tasks they set for themselves, now that they had been elevated to a position of national stewardship,
was to use the federal government’s power to convene as a vehicle for bringing together the lead-
ing experts in the field of health communication and behavioral science to lay out an agenda in
cancer communication for their fledgling division. Strategic commentaries from the meeting were
published in a special issue of the Journal of the National Cancer Institute in 1999. One of the strik-
ing features of the meeting and the subsequent commentaries was just how interdisciplinary the
field of health communication would need to be to achieve substantive impact in reducing burden
from disease at the local and national level. Academic theoreticians from schools of communica-
tion, journalism, and the behavioral sciences would be needed to build a new knowledge base for
health communication theory in the 21st century. These behavioral perspectives would need to
be coupled inseparably with a complementary understanding of preventive medicine and clinical
oncology to produce scalable interventions. Biostatisticians and epidemiologists would be needed
to surveil the efficacy of the interventions equitably across populations. Health information tech-
nologists (a.k.a. medical informaticians) would be needed to extend reach even further within
programs that were quickly being deployed in the disintermediated environment of the Internet.
Consequently, in 2003 Rimer and her colleagues announced an award using the NIH’s P-50
(Clinical Research Center) mechanism to accomplish a similar goal to that of the Cancer Centers in
promoting a transdisciplinary and comprehensiveness focus in cancer communication. The name of
the program was the Centers of Excellence in Cancer Communication Research, or CECCRs. The
P-50 mechanism required successful applicants to demonstrate a high level of health communication
research capacity through a review of four research program type projects (i.e., R01), to exhibit a
transdisciplinary approach to health communication, to maintain a cross-project core of connec-
tive expertise in areas such as methodology and dissemination, to promote training of early-career
investigators, to foster innovation through a pilot project program, and to participate in cross-center
knowledge synthesis activities. Four universities were funded during the first cycle of the initia-
tive from 2003 to 2008. The program was expanded to include participation by a healthcare-based
research group during the second cycle from 2009 to 2014.
The topical coverage of work being conducted across each of the peer-reviewed CECCR grants
turned out to be a microcosm of work being done across the field of health communication in the
first decade of the 21st century. Work was done on the public health messaging front to understand
how to improve the reach and effectiveness of health communications in an environment that was
expanding beyond the 20th-century world of “broadcasting” (one to many), to embrace the viral-
ity of messaging through peer-to-peer social networks, and to serve up audience-tailored content
through “narrowcasting” (Smith et al., 2013). Cutting-edge methodologies applied on this front
included the complementary use of sophisticated eye-tracking techniques to elucidate points of
action from public service announcements (Kang et al., 2009), functional magnetic resonance imag-
ing (fMRI) techniques designed to learn more about the neural processing behind message recep-
tion (Falk et al., 2015), and “infodemiological” (Eysenbach, 2009) research conducted by survey
experts who were expanding their surveillance to include the realm of online media and “big data”
(Shah et al., 2015). On the intervention side, the Centers engaged in pioneering efforts to improve
the transportability of motivational interviewing techniques through tailored eHealth applications
(Strecher et al., 2005; Woolford et al., 2012), while researchers working with a journalism school
created an electronic platform through which communities could translate scientific findings into a
parlance understandable to their local communities (Caburnay et al., 2012). On the hospital front,
CECCR-funded researchers were ahead of the curve in demonstrating how health information

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technologies could be deployed strategically throughout a healthcare system to ensure that crucial
patient-provider communications did not falter (Dubenske et al., 2008). Transdisciplinary work
organized through the lens of the chronic care model (Wagner, 2004) demonstrated how hospital
personnel and workflow could be engineered to create a system responsive to the actions of empow-
ered patients (Hesse et al., 2010).

Nurturing an Investigator-Initiated Research Portfolio

The CECCRs initiative, which lasted for two 5-year cycles, was intended to serve as a catalyst for
accelerating the impact of health communication science in reducing suffering from disease. This
specialized funding program was only one way for government program officers to nurture the work
needed to advance health communication knowledge and successes. In any given year, the bulk of
NIH funding is awarded to research investigators through a variety of investigator-initiated grant
mechanisms. Table 38.1 provides an overview of some of the more commonly used funding vehicles,
which are generally available across multiple institutions within the NIH.

Table 38.1 Grant Funding Mechanisms Available Through the NIH*

Mechanism Title, Comments

R01 NIH Research Project Grant Program (R01)

• Used to support a discrete, specified, circumscribed research project
• NIH’s most commonly used grant program
• Advance permission required for $500K or more (direct costs) in any year
• Generally awarded for three to five years
R03 NIH Small Grant Program (R03)
• Provides limited funding for a short period of time to support a variety of types of projects
(e.g., pilot or feasibility)
• Limited to two years of funding
• Direct costs generally up to $50,000 per year
• Not renewable
R13 NIH Support for Conferences and Scientific Meetings (R13 and U13)
• Support for high-quality conferences/scientific meetings that are relevant to NIH’s scientific
mission and to the public health
• Requires advance permission from the funding Institute
• Foreign institutions are not eligible to apply
R15 NIH Academic Research Enhancement Award (AREA)
• Support small research projects in the biomedical and behavioral sciences conducted by
undergraduate and/or graduate students and faculty in institutions of higher education that
have not been major recipients of NIH research grant funds
• Eligibility limited (https://grants.nih.gov//grants/funding/area.htm)
• Direct cost limited to $300,000 over entire project period
• Project period limited to up to three years
R21 NIH Exploratory/Developmental Research Grant Award (R21)
• Encourages new, exploratory, and developmental research projects by providing support for
the early stages of project development; sometimes used for pilot and feasibility studies
• Limited to up to two years of funding
• Combined budget for direct costs for the two-year project period usually may not exceed
$275,000
• No preliminary data are generally required

(Continued)

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 Bradford W. Hesse

Table 38.1 (Continued)

Mechanism Title, Comments

R41/R42 Small Business Technology Transfer (STTR)
• Intended to stimulate scientific and technological innovation through cooperative research/
research and development (R/R&D) carried out between small business concerns (SBCs)
and research institutions (RIs)
• Fosters technology transfer between SBCs and RIs, and assists the small business and research
communities in commercializing innovative technologies
• Three-phase structure:
I—Feasibility study to establish scientific/technical merit of the proposed R/R&D efforts
(generally six months, $150,000)
II—Full R/R&D efforts initiated in Phase 1 (two years, $1 million)
III—Commercialization stage (cannot use STTR funds)
R43/R44 Small Business Innovative Research (SBIR)
• Intended to stimulate technological innovation in the private sector by supporting research
or research and development (R/R&D) for for-profit institutions for ideas that have
potential for commercialization
• Assists the small business research community in commercializing innovative technologies
• Three-phase structure:
I—Feasibility study to establish scientific/technical merit of the proposed R/R&D efforts
(generally six months, $150,000)
II—Full research or R&D efforts (two years, $1 million)
III—Commercialization stage (cannot use SBIR funds)
K99/R00 NIH Pathway to Independence (PI) Award (K99/R00)
• Provides up to five years of support consisting of two phases
• Phase I will provide one to two years of mentored support for highly promising postdoctoral
research scientists
• Phase II will provide up to three years of independent support contingent on securing an
independent research position
• Award recipients will be expected to compete successfully for independent R01 support
from the NIH during the career transition award period
• Eligible principal investigators include outstanding postdoctoral candidates who have
terminal clinical or research doctorates and no more than four years of postdoctoral research
training
P01 Research Program Project Grant
• Support for integrated, multi-project research projects involving a number of independent
investigators who share knowledge and common resources
• Each project contributes or is directly related to the common theme of the total research
effort, thus forming a system of research activities and projects directed toward a well-defined
research program goal
U01 Research Project Cooperative Agreement
• Supports discrete, specified, circumscribed projects to be performed by investigator(s) in an
area representing their specific interests and competencies
• Used when substantial programmatic involvement is anticipated between the awarding
Institute and Center

* taken from https://grants.nih.gov/grants/funding/funding_program.htm

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Ramirez and her colleagues (2013) analyzed data on the number of applications submitted to
the NCI in the area of health communication from 2000 (the beginning of NCI’s “Extraordinary
Opportunity” announcement) to 2012. Data revealed that the most commonly used mechanism
for grant applications was the R01, with 870 applications during the time period, followed by the
R21 mechanism at 660 applications, the R03 at 299 applications, an “other” category at 294, the U
(Cooperative Center) mechanism at 215, the K (career training) award at 189, Small Business Inno-
vation & Research (SBIR) grants at 171, and P (Centers) grants at 162. Program directors can often
steer priorities through special “Requests for Applications” with set-aside funds, special “Program
Announcements” with or without focused review, and more recently through “Notices of Special
Interest” (NOSI). Through the NIH, all applications are peer reviewed according to high standards
for scientific contribution. When discretionary monies were available, NIH program officers would
make a request for “funding by exception” in support of grants that achieved a competitive score
but did not fall below the established thresholds for general funding (lower scores signify higher
quality grants).
Health communication scientists can obtain funding from other government agencies beyond
NIH and from nongovernmental organizations. The Food and Drug Administration, to use one
example, has established a robust funding platform for funding communication research relative to
the risks associated with tobacco usage. Some of those funding mechanisms mirror the Centers’ ini-
tiatives and other specialized programs utilized by the NCI at the turn of the millennium. Similarly,
the public sector Patient-Centered Outcomes Research Institute (PCORI) funds work intended to
improve outcomes among patients, and it values the contributions of health communication scien-
tists as a means to that end. Other public sector organizations of note include the Robert Wood
Johnson Foundation, the Gates Foundation for international efforts, the World Health Organiza-
tion, and many of the disease-focused organizations such as the American Cancer Society, the Susan
G. Komen Foundation, and the American Heart Association. The CDC, the Substance Abuse and
Mental Health Services Administration (SAMHSA), the U.S. Department of Agriculture (USDA),
and the constituent branches within the Department of Defense (DOD) and the Veteran’s Admin-
istration (VA) also contribute annually to health communication funding. Although funders are
notoriously fragmented in their approaches to seeding science, a few notable efforts have emerged to
create a spirit of cooperation across organizations and even across sectors. In the early 2010s, to use
one example, private sector interests along with multiple government agencies contributed resources
through the external NIH Foundation to host some of the more influential scientific meetings on
mHealth held to date. In follow-up to those meetings, the NIH and the National Science Founda-
tion merged their funding for mHealth research through their groundbreaking “Smart and Con-
nected Health” initiative.

Surveillance Research
Another important facet of Hiatt and Rimer’s model for public health impact is the use of surveil-
lance mechanisms to monitor progress in disease control and prevention. The mortality trends chart
depicted in Figure 38.1 provides an example of just how important the national cancer registry
system has been in providing feedback to all members of the “national cancer program” (a term
used to describe anyone with a stake in disease reduction, from hospitals to policy makers to scien-
tists) in steering priorities. Understanding exactly where progress was being made over time at the
population level is what prompted the National Cancer Advisory Board to identify behavioral end-
points as crucial levers for reducing overall disease burden, and it is what prompted a recognition of
health communication as a worthwhile target for strategic investment at the turn of the millennium.
Identifying patterns at the macroscopic level has been a core competency in public health from its
modern inception in the 19th century. As the story is told, epidemiologist John Snow suspected

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that the 1854 cholera outbreak in downtown London was not due to toxic vapors (i.e., “miasma”
as traditionally thought) but was due to contamination of the water supply in the SoHo district of
the city. To convince the city’s administrators, Snow constructed a meticulously populated case map
that used data to demonstrate how cases were geographically clustered around contaminated wells.
Once city administrators addressed the contamination issue, the number of cholera cases decreased.
An important take-away from the London cholera story is not just how important surveillance
data were for addressing a public health issue but also how important communication of those data
was for effecting change in the national landscape. Health communication scholars reiterated this
theme throughout several of the invited papers published in the Journal of the National Cancer Institute
in their Monographs series in 1999. As one scholar explained, risk communication is a vital activity
in which public health officials and healthcare professionals must routinely engage; yet, communi-
cating risk is hard (Fischhoff, 1999). It requires an informed understanding of audience needs and
a mastery of both the quantitative and qualitative aspects of risk in order to support effective com-
munication. At the individual level, it means understanding the self-regulatory processes by which
appraisals of danger (i.e., risk) are converted into strategies and action plans for danger reduction
(Leventhal et al., 1999). At the population level, it means overcoming competing tensions between
the commercial interests of journalism (selling papers, driving traffic to websites) and the structural
incentive of academia (pressures to “publish or perish,” even for early or anomalous findings) to
achieve a public health message that is believable and compelling (Levine, 1999; Nelson et al., 2009;
Viswanath et al., 2008).
In 2001, the NCI launched its own surveillance program to monitor the knowledge, attitudes,
and behavioral outcomes necessary to drive reductions in cancer and other diseases at a time of
intense change in the overarching communication environment (Nelson et al., 2004). Termed the
Health Information National Trends Survey, or HINTS, the program was launched as a general
population survey of noninstitutionalized adults age 18 years and older. It was originally scoped as a
biennial survey but was changed to a yearly administration (Finney Rutten et al., 2012) to monitor
changes more quickly after passage of the Health Information Technology for Economic and Clini-
cal Health (HITECH) Act of 2009 and the Patient Protection and Affordable Care Act of 2010.
HINTS data are traditionally maintained by the NIH for a period of approximately six months dur-
ing which time they are cleaned and deidentified. After that initial period, the data are posted online
for general use by the policy, scientific, and public communities. Following this open science ethos
(Hesse, 2018; Nosek et al., 2015), the HINTS program has produced more than 450 peer-reviewed
publications, 42 data briefs, four technical reports, and two special issues of the Journal of Health Com-
munication, and it has contributed data from more than 40,000 volunteer participants at the time that
this chapter was written. The program has served to benchmark progress for health communication
goals as articulated by the cross-agency “Healthy People” program (Hesse et al., 2014), as well as the
NCI, the CDC, and even some government programs internationally (Finney Rutten et al., 2020;
Hesse et al., 2013).
The evolution of “big data” technologies in the surveillance sphere continues to warrant work
by health communication scientists. As Shah and colleagues (2015) observed, an exponential growth
in the “volume, velocity, and variability” (p. 6) of both structured and unstructured data sources
requires an evolution of computational methods to extract knowledge and engage in interventions
through the new communication infrastructures. Communication scientists involved in the devel-
opment of eHealth and mHealth interventions have adopted their methods and theories to provide
real-time, adaptive feedback following techniques refined through the engineering sciences (Riley
et al., 2011). From the field of artificial intelligence (AI), machine learning techniques can be applied
to terabytes and petabytes of unstructured data to produce new insights on communication patterns.
Most informaticians (e.g., individuals trained in medical informatics) recognize that these types of AI
techniques will be necessary for turning the burgeoning data from electronic health records (EHRs),

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remote medical sensors, pharmaceutical tracking devices, and wearable body monitors into action-
able decision support architectures (Hesse, 2016). Many of these AI-supported tools will take the
form of conversational agents. Public health officials and health communication specialists will need
to be at the table to ensure that the techniques do not inadvertently introduce structural bias, that
the resulting decisional architectures are usable and comprehensible to all users, that the techniques
are safe, and that in the aggregate the tools improve personal and population health (McGreevey
et al., 2020).
Big data architectures are not just fanciful visions for the future; they dominate responses to
information searches through Google, they permeate social interactions on Facebook, and they
shape consumer choices through Amazon. In a meticulously researched tome on the “surveillance
economy,” Zuboff (2019) revealed just how ubiquitous big data techniques are in harvesting online
and offline behaviors for targeted opportunities in personalized advertising. To promote the new
commercial business models, the large social platforms are creating architectures that serve as mag-
nets for attention and encourage content contribution from all comers. The more individuals use
these digital platforms, the more successful data engineers will be in mining the “behavioral exhaust”
(Zuboff, 2019, p. 68) of online interactions to package and sell in pursuit of digital advertising rev-
enue. Granted, many of these transactional exchanges are harmless: Consumers can benefit when
retailers find better ways of customizing their offering to meet individual wants and needs. There
are many unanticipated consequences that should concern the health communication community,
however. Narcotics, alcohol, and tobacco vendors can use the unregulated byways of electronic
communication channels to skirt government regulations (Abroms, 2019). Conspiracy theorists can
sow health misinformation quickly and broadly using social media, while bad actors—such as the
troll houses of adversarial governments—plant the seeds of unhealthy discord through medical dis-
information (Chou et al., 2018). The public needs the credibility of public service, career scientists
working jointly with professional nonprofit organizations to bring these infractions to the surface
and to correct the record with evidence-based medical recommendations.

Knowledge Synthesis
In an information environment inundated with data from conflicting sources, Americans exercise
their trust in the medical establishment to make sense of the cacophony of information around them
(Eysenbach, 2007). This is a weighty and often underappreciated duty for health communication sci-
entists working within the federal architecture: to make sense of the results coming from the myriad
of studies funded by the agency and from other sources so that the results of that research can be used
to guide national decision-making. The results of that knowledge synthesis, especially in the area of
health communication, can have life-and-death consequences if not managed properly.
The challenge of making sense of results in one’s particular niche within the scientific knowl-
edge base has become at once easier and much more complicated with the advent of information
systems. From 1971 to 1997, the National Library of Medicine (NLM) offered an online database
called MEDLINE to institutions as a way of spurring knowledge access and synthesis in medicine. In
1996, NLM published a free, searchable interface to the MEDLINE database through the web called
PubMed. By January 27 of 2020, the PubMed interface provided access to more than 30 million
citations and abstracts dating back fully to 1966 and selectively to 1865. Confronting a demand for
“paywall-free” access to taxpayer-funded research, a presidential executive order in the United States
was issued in 2013 directing federal agencies with more than $100 million in research and develop-
ment expenditures to develop plans for making the results of federally funded research available to
the public through open access (Holdren, 2013). The NIH responded with a requirement that all
federally funded research publications be made available without fee within one year after publica-
tion, giving publishing houses and professional societies time to extract value from their curation

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services (National Institutes of Health, 2016). Data-sharing requirements were articulated for grants
receiving more than $500,000 per year in direct costs.
With so much data and access to publications being made available to the public, the big question
now for health communication practitioners is exactly how best to communicate science in a way
that is empowering to individuals and communities. Journalist David Shenk expressed his concerns
that an unfettered, open access data environment—though important for scientific collaboration—
may leave many members of the general public paralyzed with indecision as they confront the
realities of a communication environment awash in “data smog” (Shenk, 1997). A scientific ally
in thinking through the pragmatics of how to communicate science effectively to the public is the
U.S.-based National Academies of Science, Engineering, and Medicine. This nonprofit scientific
organization routinely assembles leaders from the scientific community to visit a topic of national
interest in a publicly accessible forum, and from those meetings, it produces scientific consensus
reports to steer policy. One such series has focused explicitly on the “Science of Communicating
Science.” A 2017 research agenda based on scientific consensus can be downloaded from their web-
site (National Academies of Sciences and Medicine, 2017).
Another approach is the one taken by the U.S. Preventive Services Task Force funded by the Agency
for Healthcare Research and Quality (AHRQ). Table 38.2 explicates the meaning of grades assigned to
conclusions of net benefit from evidence regarding a targeted practice, such as colorectal cancer screen-
ing, as reviewed by the task force. The levels of certainty reflect evaluations of existing clinical evi-
dence from the scientific literature, with high levels of certainty signaling an available evidence stream
that consistently points to net benefit from the practice in question. Low levels of certainty reflect an
absence of such evidence from the peer-reviewed medical literature. With respect to colorectal cancer
screening, the USPSTF offers a level “A” recommendation for adults age 50–75, and a “C” recom-
mendation for adults 76–85 years of age. Patient communication can be adjusted accordingly.

Table 38.2 Meaning of USPSTF Grades Regarding Levels of Evidence

Grade Definition Suggestions for Practice

A The USPSTF recommends the service. There is high Offer or provide this service.
certainty that the net benefit is substantial.
B The USPSTF recommends the service. There is high Offer or provide this service.
certainty that the net benefit is moderate or there is
moderate certainty that the net benefit is moderate to
substantial.
C The USPSTF recommends selectively offering or Offer or provide this service for
providing this service to individual patients based on selected patients depending on
professional judgment and patient preferences. There individual circumstances.
is at least moderate certainty that the net benefit is
small.
D The USPSTF recommends against the service. There is Discourage the use of this service.
moderate or high certainty that the service has no net
benefit or that the harms outweigh the benefits.
I The USPSTF concludes that the current evidence is If the service is offered, patients
insufficient to assess the balance of benefits and harms should understand the uncertainty
of the service. Evidence is lacking, of poor quality, about the balance of benefits and
or conflicting, and the balance of benefits and harms harms.
cannot be determined.

Source: https://www.uspreventiveservicestaskforce.org/uspstf/about-uspstf/methods-and-processes/grade-
definitions

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Conclusion: A Call to Service

Health communication as a field of scientific endeavor and practice in the 21st century is multi-
faceted. It covers the traditional public health campaigns by which a well-crafted message can raise
awareness of a danger, pique motivation, and instill clarity for personal action. At a population level,
these broad ranging campaigns have the potential of reaching substantial numbers of the popula-
tion quickly, as was necessary during the SARS-CoV2 pandemic of 2020; and they can reduce
risks of mortality from chronic disease, as has been the case with the multitude of hours invested
in tobacco control efforts. At a clinical level, frameworks for patient-centered health communica-
tion have emerged that support the indispensable functions of conveying information, support-
ing decision-making, fostering healing relationships, enabling patient self-management, managing
uncertainty, and responding to emotions (Epstein & Street, 2007). At the contextual level, advances
in health communication technologies have extended the reach and cost-effectiveness of health
communication interventions through just-in-time adaptive interventions; mobile, always available,
communication response systems; structured decision-support architectures; and community-based
platforms for local, targeted messaging, to name just a few (Hale et al., 2018; Hesse et al., 2020;
Noar & Harrington, 2012).
To realize the promise of this work, the field has expanded in its interdisciplinary reach. Schools
of communication expand their reach by forging intellectual alliances with schools of psychology,
computer technology, public health, medicine, sociology, anthropology, social work, and even busi-
ness. Academic theoreticians contribute to the process by identifying the pathways, tested through
hypothesis-driven discovery, by which health-related communications are perceived, internalized,
and acted upon across audiences and populations. Methodologists and surveillance researchers con-
tribute evidence on the efficacy and effectiveness of different public health interventions to facilitate
a self-correcting path toward greater communication coherence. Interventionists assume the indis-
pensable responsibility for translating theoretical understanding and evidence-based approaches into
efficacious and replicable programs. Professional opportunities in health communication now span
the gamut from the university to the private sector to work within government and work within
nongovernmental foundations and nonprofits.
What unifies all of these efforts, I would argue, is a mutually felt call to service. Health com-
munication is the essential pathway by which the evidentiary findings of biomedical discovery are
translated into real benefits for real people (Hesse, 2019). Obstructions within that pathway—as
when health-related signals are drowned out by the noise of an advertisement-strewn marketplace
or when certain populations fail to receive the same fidelity of clinical outreach as others—strike
an internal chord of social justice in everyone. Addressing these obstructions will require work by
all of us. It will require funding for basic science, for the development of effective interventions, for
surveillance on population trends, and for the formulation of reliable institutions and programs to
incorporate best aspects of these endeavors in the service of protected public health. More impor-
tantly, it will require coordination so that all pistons within the public health engine are firing with
equal efficiency. Governmental and nongovernment funding agencies are well-suited to serve as the
platforms through which the endeavors of health communication scientists and practitioners can
achieve even more momentum and collectively achieve sustainable impact.

Note
1. Much of this chapter is based on work conducted by the author while serving as chief of the Health Com-
munication and Informatics Research Branch at the National Cancer Institute, part of the National Institutes
of Health. The author retired from the federal government on July 31, 2019, and has not assumed a new
professional affiliation since that time.

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 39
CHALLENGES IN CONDUCTING
HEALTH COMMUNICATION
RESEARCH
Amy Koerber and Avinash Thombre

Research in any discipline is, by its very nature, challenging. When we are doing scholarly research,
regardless of the discipline, we are refusing to take accepted knowledge, or common-sense beliefs,
as the final word on any subject; this task will inevitably present some challenges. Although we
acknowledge that researchers face challenges regardless of their discipline, our goal in this closing
chapter is to consider some of the particular challenges that are most likely to arise for researchers
in health communication. In addition to highlighting these challenges through examples from our
research, we also summarize recent and relevant literature addressing research challenges and point
toward solutions or resources to help us overcome them.
The chapter is organized around different categories of challenges that are likely to exist for
health communication researchers: gaining access to participants, working in communities, working
internationally, addressing institutional review board (IRB) concerns, staying abreast of scientific
knowledge production, and navigating complex and evolving publication processes. These chal-
lenges are diverse, and the extent to which any individual researcher may face any of these will
depend on the subject matter, geographic location, and methods used in their research. In spite of
this variation, however, some key themes emerge in our discussion of potential challenges and in our
presentation of possible solutions, as will be addressed in our conclusion.

Gaining Access to Participants and Settings

One of the most challenging situations that we may encounter as health communication researchers
is gaining access to the very forms of communication we want to study. In particular, one of the most
important sites where health communication occurs is in patient-provider interactions. And even
though the need to improve patient-provider communication is acknowledged, this is a highly pro-
tected form of interaction, and it can be difficult to obtain the permission needed to conduct first-
hand observations of this form of health communication. Whether studying patients and providers
in clinic settings or other populations in different settings, several health communication researchers
have written about the difficulties and obstacles they have faced in attempting to gain access to the
various forms of health communication they wish to study. These difficulties and obstacles may arise
from several different directions and for different reasons.
Some researchers have addressed problems that arise in gaining access to specific populations.
For instance, Manson et al. (2004) address the complexities that emerge from conducting clinical
research in American Indian and Alaska Native communities. The challenges are multiple, including

DOI: 10.4324/9781003043379-47 587

 Amy Koerber and Avinash Thombre

the fact that many such communities have their own regulating body that functions almost like an
institutional review board. This can cause problems not only for accessing the population to be able
to include community members as research participants but also for issues such as intellectual prop-
erty and being able to publish data that are collected at such a site. However, the authors also point
out how detrimental it is to exclude such communities from clinical research. They point to specific
examples of studies that were seriously deficient because the researchers were not able to enroll
participants from these often-marginalized communities or to carry a study through to completion.
The clear message, as communicated by these authors, is that we must find ways to overcome these
challenges if we want our research to be inclusive of all populations.
Health communication scholars have also offered nuance to our understanding of key concepts
that are central to research across the health disciplines. For instance, informed consent is often
seen as a foundation for the ethical involvement of patients or other research subjects in any kind of
health-related research. But approaching informed consent from the perspective of health communi-
cation, as Bivens (2017) has done, can open up new understandings of this concept, such as “micro-
withdrawals of consent.” As Bivens observes, we are often inclined to think of “informed consent” as
something that is either yes or no: A person consents to a given treatment or research participation,
or they do not. But when we adopt a rhetorical perspective, especially with an emphasis on listening,
we become aware of situations in which people who have previously consented to participate in a
study may gradually begin to withdraw all or part of their consent. For example, Bivens’s research
involved observations of parents and infants interacting with providers in the neonatal intensive
care unit (NICU) setting. In a few cases during her observations, she noticed that participants were
becoming uncomfortable. In such cases, she sensed that it was time for her to leave the scene and
discontinue observation of that particular patient-provider encounter. This can be a difficult deci-
sion for a researcher to make, as we often have to overcome numerous obstacles before we even gain
access to a research site. But an important part of maintaining trust with organizations and individu-
als who grant us access to their research sites is that we must also know when to stop or withdraw.
Angeli (2018) is another health communication scholar who has written about the difficulties
she faced in accessing the site that she wanted to study for her dissertation. Specifically, she wanted
to study patient-provider interactions in the context of emergency medical care. She did eventually
gain access, but she had to compromise her original research plan. She even went so far as to get
paramedic training so she could work alongside the emergency medical crews rather than ride along
as a potentially disruptive outsider. Echoing Bivens’s (2017) argument, the important takeaway from
Angeli’s narrative is that if we want to study the communication that occurs between patients and
providers—especially in highly sensitive situations—the first step is to build trust with those who
can grant access. And once that trust is established, we must do everything we can to maintain it.
In spite of the obstacles that can exist, health communication researchers often succeed in gain-
ing access to the patient-provider encounter, and, in fact, some of the most important research in
our discipline is valuable precisely because of the direct access that researchers have been able to
achieve. For instance, Ellen Barton’s research on communication between oncologists and patients
offers extremely rich insights that never would have been possible if she had not been able to interact
directly with providers and patients (Barton, 2001, 2004). Christa Teston’s research examining the
discourse among cancer specialists from various disciplines is also uniquely valuable because she was
able to observe these physicians in a natural setting while they were interacting with each other to
discuss specific cases (Teston, 2009, 2012).
Finally, even in health communication research that would seem to require less intimate involve-
ment in the patient-provider interaction, we still must think carefully about the power dimensions
of the researcher-participant relationship, and we must be mindful of how we construe the possible
risks of participating in such research. For example, Teston et al. (2019) discuss how the risk of
participating in surveys is different for precarious publics—meaning individuals who are marginalized

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in our society. They caution health communication researchers who use surveys not to do so uncriti-
cally and not to be too quick to assume that survey participation is harmless and risk-free to all
populations.
To summarize, successful health communication research, like almost any research that involves
human subjects, relies largely on a researcher’s ability to build relationships and trust. Health com-
munication research, in particular, poses some challenges because of the protected and private nature
of the healthcare encounter. However, when we approach our research as relationship building, we
come to understand the importance of establishing and maintaining trust with the communities
where we intend to conduct our research. A key component of this relationship building is know-
ing when to step back or when to consider a different approach than what we initially thought was
ideal. Especially in the case of direct observations of patients and providers, we must remain flexible
and aware of cues that indicate when it is better to step back and look for an alternative approach
that still allows us to address our research questions while maintaining relationships. Of course, the
challenge of building and maintaining relationships can become even more complex when external
funding entities are involved, which often means we have less control over the relationships we seek
to build and maintain.

Working in Communities
Effective public health research depends on community-based partnerships and research collabora-
tions with populations that are isolated and hard to reach. In a review of challenges encountered
while doing community-based participatory research, Freeman et al. (2006) emphasized the need
to think creatively about how we conduct our research and more broadly engage diverse groups of
individuals in the research process. A project called “Spit for Science” provides important resources
in this direction by providing opportunities for research to students, raising awareness and under-
standing of the human factor behind research, and lastly by providing generalized feedback to stu-
dents that results from different projects (“Spit”, n.d.). Because stakeholders want research addressing
structural and cultural challenges in health services (e.g., lack of holistic, patient-centered, culturally
safe care), building health professionals’ communication skills should be devised in partnership with
consumers and focus on the needs of vulnerable groups.
Conducting research in this way involves a considerable commitment of time and resources, as
well as fine-tuning of our research tools. Additionally, present-day health communication scholars
are based mostly in urban academic centers and lack the expertise in terms of culture, language,
and ethnic insights to establish community connections. However, in the last few decades, health
communication scholars have made great strides in establishing partnerships with hard-to-reach
communities. For example, recent research has involved understanding health perspectives of Inuit
and Métis Peoples in Canada who face alarming health inequities, subpar access to healthcare, and
culturally discontinuous services (Jaworsky, 2018).
Although community-based research presents multiple challenges, the potential benefits include
raising awareness about health communication research areas and findings, creating a public that is
more connected to and aware of the importance of research, creating opportunities for students, and
increasing participation rates in studies. By thinking creatively about how we conduct our research
and engaging diverse groups of individuals in our research, we can significantly increase the reach
and impact of health communication and science in general (Dick, 2017).
As mentioned earlier, one of the first issues that researchers encounter when forging collabora-
tion with communities relates to establishing trust. Trust building can be difficult given the incon-
sistencies between health communication researchers who are trained in academic research and
community members who lack the same training. The community members approach research
from personal experience and the reality of their day-to-day existence. However, researchers often

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must approach research from the perspective of satisfying the requirements of research institutions
and research timelines. For example, a patient suffering from DVT (deep vein thrombosis) was
approached by researchers to understand her coping experiences. The patient willingly shared her
experiences, thinking that she would be helped in the process with suggestions for coping with
DVT; however, no such promises were made by researchers (Elbahey & Thombre, 2020). Trust
building between the two parties was further hampered given these different expectations for the
ways in which the results will ultimately be returned to and potentially affect the community.
These communication issues related to trust building are particularly challenging when health
communication researchers and community members are from different ethnic and linguistic back-
grounds, which further widens the gap between ways of talking, thinking, and perceiving. Differ-
ing linguistic patterns, coupled with differences in conceptualizing the research process, affect the
interactions and exchanges between both parties, creating a challenging environment for building
trust. However, despite these challenges, community partnerships offer a variety of benefits. One
of the ways to build initial trust and overcome communication challenges is through knowledge
translation, communication strategies, and tools. Before the start of a project, winning the trust
of community partners needs to be accomplished by laying the proper groundwork and spending
enough time communicating about the purpose of research. It is also beneficial to ask the commu-
nity members what their perceived problems are to ensure that the research agenda fits with their
self-identified needs.
Whether community-based collaborations span different geographical areas or occur in the same
city, successful relationship building and trust building take time. Thus, a good place to begin this
process is to have more in-person or face-to-face contacts (Suarez-Balcazar et al., 2005). Even
though it is difficult to accomplish, researchers should strive for equal recognition of professional
qualifications and certifications when these differ among members of the group and a balanced dis-
tribution of resources and power (Cochran et al., 2008; Maiter et al., 2008). Trust and reciprocity
between researchers and community members will promote meaningful engagement and increase
the likelihood of success (Christopher et al., 2008).
In order to build the strong relationships that are vital to this success, using methods that employ
a common language to discuss research components is the first step (Suarez-Balcazar et al., 2005).
Second, an assessment of the levels of literacy among collaborators and end users should be initi-
ated (Minkler & Wallerstein, 2008). Steps such as engaging local professionals and opinion leaders
working in the community are vital; these people include healthcare providers and teachers. Such
individuals can help facilitate understanding between researchers and local residents. These com-
munication efforts may foster a mutual understanding of the research process, methods, results, and
interpretation among all research partners and participants. For example, an evaluation of which
media channels (e.g., community presentations or newsletters) would best reach the target popula-
tion could help to enhance successful communication (Smylie et al., 2004). Identifying the best
methods for the dissemination of research results that include statistics may be particularly impor-
tant: Evidence suggests that statistical literacy is low among the general public (Maiter et al., 2008).
Presenting statistical results in a way that increases accessibility and transparency could help prevent
miscommunication and promote mutual understanding. Effective knowledge translation and com-
munication tools will help collaborators identify which results are most meaningful and which strat-
egies will be most effective for communicating the results to end users.
Research partners should discuss the overall goals of the collaboration and include a statement of
objectives at the beginning of any agreement; this provides context for interpreting the agreement
(Parry et al., 2015). The parties should also discuss their expectations of the research (including ben-
efits, contributions, and timelines) and ensure that provisions of the agreement are consistent with
a shared understanding of expectations. The agreement should include a list of definitions used in
the document. This process will help open communication about a variety of issues that may not

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otherwise have been discussed and help prevent communication challenges later on by providing
written documentation that partners may consult over time. Although tensions exist around com-
munity capacity building as we assemble and maintain a large cohort for investigations, open and
frank discussion and a transparent process upfront about project direction, finances, expectations,
and other dimensions are necessary. As will become clear in the next section, these considerations
can be especially important in handling the intricacies of research conducted in international spaces.

Working Internationally
Synnot et al. (2018) conducted an international survey of patients, caregivers, consumer representa-
tives, health professionals, policy makers, and researchers to identify health communication research
priorities. They found that research addressing structural and cultural challenges in health services
(e.g., lack of holistic, patient-centered, culturally safe care) and building health professionals’ com-
munication skills were perceived as the most pressing needs. They advised that solutions should
be devised in partnership with consumers and should focus on the needs of vulnerable groups.
Addressing these objectives may be facilitated by conducting research that involves international
collaborations.
Designing and conducting international collaborative health communication research can gener-
ate knowledge, enhance the external validity of research completed elsewhere, extend the range of
applicability of existing research, and develop mutually beneficial relationships that can contribute
to solving global problems. When such collaboration works, it creates synergy and fosters ways of
addressing research questions, extending existing research to other populations, constructing mean-
ing, and drawing implications that would not otherwise have been. This also means that both part-
ners optimize the use of their resources and find solutions to intractable problems. Furthermore,
such research should be mutually beneficial to stakeholders across national boundaries and facilitate
sustainable solutions to world problems.
Finding collaborators is an organic process, and the timing needs to be right. An opportunity to
work together might not present itself for years. However, international conferences provide a good
opportunity to network and brainstorm ideas leading to international collaboration. Collaboration
can occur between health communication scholars across continents who have shared ideas and data
through the exchange of emails, resulting in an academic paper from collaborators who have never
physically met (Bennett & Gadlin, 2012).
International collaborations provide a range of challenges and, at times, inconveniences. Some
may be easy to adjust to; others may turn the project into a difficult grind. For example, getting
used to the work culture in another country may be relatively simple. Working across time zones,
though, requires changing work schedules, which can be cumbersome. Another important factor
that needs to be considered is the different languages of researchers, which may lead to problems
with communication. Differing lingua francas can create communication barriers with colleagues
from countries where English is not a common second language; work may have to proceed slowly.
Ad hoc translation and transcriptions can address these challenges.
Researchers need to realize that given the aforementioned differences, conducting international
research simply takes longer. In short, although the challenges of international work may seem
daunting, the rewards of making true differences in the quality of health of hard-to-reach popula-
tions make it worthwhile.

Addressing Institutional Review Board Concerns

As we attempt to gain access to the research sites where health communication occurs, one of the
first challenges we often face is gaining IRB approval. King et al. (2018) frame such challenges as a

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problem of incommensurability. Specifically, these authors argue, health communication researchers

often start with a different definition of communication than that assumed by the medical experts
who can grant permission to the sites where we want to conduct our research. This situation creates
unique challenges from the outset, requiring us to explain the value of our research in language that
will be comprehensible and persuasive to individuals who start from a different set of assumptions.
Such incommensurability can be exacerbated when a health communication researcher is attempt-
ing to gain approval to research patient-provider communication in a medical setting because, prior
to some recent changes that have occurred in federal guidelines, this research would often require
approval from two different bodies: one affiliated with the researcher’s home institution and another
with the medical institution where they intend to conduct their research.
Significant changes occurred in federal IRB guidelines, effective January 2018, that are helping
to address some of the past difficulties encountered by health communication researchers. Spe-
cifically, the “Federal Policy for the Protection of Human Subjects” document, also known as the
“Common Rule,” was revised in 2017 in response to several changes that had recently occurred in
the nature of human subjects research. These changes affect social and behavioral science research,
more generally, and they also have particular significance for health communication researchers.
First, categories of exempt research have been revised and expanded. Second, and most pertinent
to health communication researchers, is the loosening of restrictions on the kinds of research that
health communication researchers often do, including interviews, surveys, and focus groups. These
forms of research include “benign behavioral interventions on adult subjects, in which the subject
prospectively agrees to the intervention and information collection” (Riley & Akbar, 2017, para. 6).
Whereas much of this research used to require expedited review, it is now generally deemed exempt.
Another significant change is a mandate to use a single IRB as the authority for research conducted
at multiple sites, rather than requiring researchers to obtain separate IRB approval from each site
(Riley & Akbar, 2017).
It is hoped that these changes will address the intense criticisms that have long been levied
against IRBs, particularly by social and behavioral scientists. These scientists have drawn attention
to incompatibilities between the biomedical model that governs IRB understandings of research
and their own understandings (e.g., White, 2007). Nonetheless, as health communication research-
ers, we should continue to expect that we will face challenges in our interactions with IRB entities
at our own institutions and the institutions where we wish to conduct our research. Because IRB
principles were initially developed in the context of biomedical research (Grady, 2015), we cannot
always expect that our research protocols will be easily evaluated by these principles. Furthermore,
depending on how the IRB is structured at our institution, we cannot always expect that the experts
who review our research protocols will possess expertise in the social science methods that we typi-
cally use to study communication in the healthcare context. In fact, we need to remember that these
experts may operate with a definition of communication that is very different from what we assume.
When we approach the challenge of IRB review with this awareness, we can see the IRB process as
an opportunity to engage with experts who approach communication from different perspectives,
and we can use this opportunity to expand our own understanding and to raise awareness of our
discipline.

Staying Abreast of Scientific Knowledge Production

The importance of communication in healthcare has become more apparent than ever as the
COVID-19 pandemic has created a situation in which health information—and sometimes mis-
information—is spreading just as quickly across the globe as the virus. For a number of reasons, it
has been suggested that this pandemic may forever change the mechanisms of science communica-
tion—for example, leading to a proliferation in the number of preprint articles and a greater reliance

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on such preprint findings because of the intense demand for rapid scientific advances (Koerber,
2020). Along these lines, one key development of which health communication researchers need to
be aware is the rise of the open science (OS) movement. Much like the open source movement in
software development, the OS movement promotes open collaboration and contribution among sci-
entists in sharing research data, lab notes, and other research processes, making them freely available
under terms that enable reuse, redistribution, and reproduction of the research and its underlying
data and methods (Vicente-Saez & Martinez-Fuentes, 2018).
The significance of OS in the context of COVID-19 became clear in a February 18, 2020, state-
ment published in The Lancet: “Statement in Support of the Scientists, Public Health Professionals,
and Medical Professionals of China Combatting COVID-19” (Calisher et al., 2020). The statement
calls on the global scientific community to stop the spread of conspiracy theories and to unite in
their support of those scientists in China who are working diligently to ensure that the best quality
information is available in formats that ensure such information will be trustworthy, accessible, and
efficient. As the statement says,

The rapid, open, and transparent sharing of data on this outbreak are now being threat-
ened by rumors and misinformation around its origins. We stand together to strongly
condemn conspiracy theories suggesting that COVID-19 does not have a natural origin.
Scientists from multiple countries have published and analyzed genomes of the causative
agent, severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), and they over-
whelmingly conclude that this coronavirus originated in wildlife, as have so many other
emerging pathogens.
(para. 3)

As this statement suggests, in the face of a pandemic that has spread so far and so fast that it is difficult
to even process, scientists across the globe are becoming increasingly aware that they need to com-
municate their findings just as quickly and effectively in order to keep pace. In response, not only
is science being conducted rapidly in hopes of finding some answers, but it also is being distributed
more quickly and efficiently than ever before, partly due to the proliferation of preprint servers that
allow early release of scientific findings and partly due to the ease with which social media outlets
such as Twitter can share these findings with global audiences.
Of particular interest to health communication researchers, the first publication that allowed for
widespread access to the genome sequence of the virus was at a website called bioRxiv, “The Pre-
Print Server for Biology.” As noted in its “about” page, this website allows for preprint publication
of scientific findings, which allows authors to “make their findings immediately available to the
scientific community and receive feedback on draft manuscripts before they are submitted to jour-
nals” (bioRxiv, n.d., para. 1). The COVID-19 genome sequence, authored by a team that had been
working to determine the biological origins of this virus, was published on the bioRxiv server as a
preprint article on February 11, 2020 (Gorbalenya et al., 2020).
But the flip side of this emphasis on the rapid sharing of scientific information that is needed to
understand this virus and its spread is that, in some cases, inaccurate or incomplete information is
being treated and circulated as true and trustworthy. And just as important as effective, efficient, and
accurate communication among scientists is the issue of communication between these scientists and
the general public. The OS movement was started in response to the need for rapid dissemination
of biomedical research. However, in the field of health communication, the movement is equally as
crucial when we consider “infodemiology” and science communication.
Hu et al. (2020) first used the term “infodemic” in a preprint published in February 2020 as a
way to characterize the spread of false names for the virus that occurred well before the scientific
community had agreed on its correct name. At the time of this chapter’s writing in the spring of

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2021, articles on infodemics have already been published in the flagship journal of the field, Health
Communication.
Indeed, the recent COVID-19 crisis has highlighted the importance of effective health com-
munication from several perspectives. An important challenge that emerges from this pandemic is
that in an age where information—both good and bad—can circulate so widely and so quickly, we
are made increasingly aware that we cannot assume that the communication of health information
is separate from the production of that information. The whole knowledge production process is
compressed, so we have a situation where tidbits of scientific data—which might be accurate in
themselves, or at least partially accurate—can easily circulate and become understood as gospel truth.
Sometimes this rapid spread will involve communication professionals, but it often occurs without
the involvement of anyone who has any professional communication expertise.
Thus, health communication experts need to be on the ground with scientists, offering exper-
tise to ensure that the latest scientific findings are communicated efficiently, effectively, accurately,
and ethically to the many audiences that can benefit from them. The current pandemic could have
lasting impact on our work by reminding us that effective and ethical communication of research
findings is every bit as important as the work that scientists are doing in laboratories and clinics, both
now and in future public health crises.

Navigating Complex and Evolving Publication Processes

Publishing research findings presents a set of challenges of which researchers across the disciplines are
aware. Along these lines, some of the changes in scientific knowledge production that were outlined
in the previous section may also present new challenges for health communication researchers as we
develop and submit our own work for publication in scholarly journals. With the increasing avail-
ability of online publication and the rise of open access publication models, 21st-century scholarly
publishing is changing at such an unprecedented rate that it is hard to pinpoint what might be the
best advice to offer health communication scholars. Indeed, such advice might very well become
outdated between the time content is drafted and the time it goes to print.
In the last decade, the world of publishing has evolved beyond anyone’s foresight. In this new
publishing world, traditional print media are increasingly being supplanted by electronic media.
Journals are increasingly accessed through subscription packages rather than individual subscriptions.
Additionally, health research funding agencies and professional associations are increasingly advocat-
ing free public access to scientific publications. The challenge we face is to protect the integrity of
scholarly publishing even as academicians adapt to new technologies, circumstances, and demands.
Universities and academics were accustomed to library subscriptions, which were a major source
of revenue and covered the costs of publishing scholarly journals. However, with the shift to open
access, the new trend is for journals to increasingly finance their business operations by charging
fees to authors whose papers are accepted for publication. Named the “gold open access” model,
one of the big advantages of the new model is the possibility of making research freely available to
any reader who wants it. However, the system that requires authors to pay to publish has created
many unanticipated and negative side effects. Although in the past it was a major business venture to
publish a journal, now with online publishing there is a lower barrier to launching a new scholarly
publishing operation. It is easy for anyone to quickly and cheaply start a new journal or suite of
journals, and with the rapid proliferation of new journals, it becomes increasingly difficult for read-
ers, authors, and science journalists to distinguish legitimate scientific publications from those that
publish work simply because the author was able to pay the publication fee (Richtig et al., 2018).
Most health communication research was traditionally published based on the “green open
access” model, which offers access to an author’s published content under strict rules and restrictions
of the copyright law. Under this system, an author had to sign a legal contract with the publishing

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journal regarding the use and reuse of the work, which differed from one publishing house to
another. Although this system ensured rigorous review processes and quality control, its drawbacks
included less accessibility as most of the fees for access were incredibly high. However, this green
open access is fast changing to a gold open access system (meaning that the publication cost is paid
by the author).
One unintended yet important side effect of these changes in scholarly publishing, as researchers
across the disciplines are becoming increasingly aware, is the rise of so-called predatory publishing.
We are now accustomed to receiving emails inviting us to submit to a journal in a discipline far
afield from our own, with promises of rapid peer review and fast publication. We also receive emails
inviting us to be guest speakers at conferences that sound prestigious but have exorbitant registration
fees. Many of these e-mail messages are easily identifiable as spam, and we are accustomed to hitting
“delete” when we recognize them as such. But the fact is that numerous authors every day submit
their work to journals that they later find out may be labeled as “predatory”—meaning that the
journal publisher is simply interested in collecting fees from authors and accepting their submissions
but is not at all concerned about the quality of work that gets printed (Pyne, 2017).
Predatory journals pose several problems. Most notably, such journals mimic the practice of
charging author publication fees that are adopted by some open access journals. In addition, although
they publish authors’ submissions in a format that may appear to be a legitimate scholarly article,
there has been no peer review prior to publication; thus, scholarly rigor is compromised. Basically,
the promise of easy revenue compels these dishonest publishers to bypass standard peer review and
publish research findings that have not been vetted, even though the journals often present them-
selves as legitimate academic publications. In addition, the pressure to publish makes some research-
ers desperate and therefore more likely to be deceived by these predatory journals. This practice has
led to the unethical publication of numerous papers that are unscientific and should never have been
published (Ferris & Winker, 2017). (Of course, it is also possible that some good-quality research
results are published in predatory journals; however, this is also problematic for the authors of such
research, whose scholarly reputation could later be called into question if the journal is identified as
predatory.) Unfortunately, recent research has suggested that the problem is compounded by the fact
that subsequent researchers are not always able to detect the fraudulent nature of these publications,
so the articles are subsequently cited and thus threaten to diminish the quality of subsequent science
(“How to Spot”, 2020). Using predatory journals, anyone can publish articles that appear scientific,
and such articles are frequently included in academic indexes such as Google Scholar™.
Another dimension of the challenge that scholars currently face is that the number of scholarly
articles published has increased exponentially, making it harder to stay abreast of current research.
Given the volume of publishing, it now takes more time to filter out the irrelevant and low-quality
articles, making it more difficult to keep up with the vast amount of legitimate research available on
any given topic. Recognizing the seriousness of the threat that is posed by these fraudulent publish-
ing practices, a 2017 report by the National Academies of Sciences, Engineering, and Medicine
identified predatory journals as one of the “new forms of detrimental research practices” that cur-
rently threaten research integrity (NASEM, 2017, p. 2). However, experts disagree on the inherent
value of open access publishing as a sustainable publishing model and even on how to define predatory
(Roberts, 2017; Teixeira da Silva et al., 2019; Van Noorden, 2014). Some groups are developing
consensus around agreed-upon definitions (e.g., COPE Council, 2019; Grudniewicz et al., 2019),
whereas others have argued for abandoning the term altogether and replacing it with another term
such as deceptive (Anderson, 2019).
Some scholars have taken up the effort initially launched by Jeffrey Beall, who published a list of
predatory publishers and journals in 2008 but took it offline in 2017 amid great controversy. This
controversy arose because many people, including editors of journals included on his list, questioned
the legitimacy and reliability of the methods he used to distinguish predatory journals from those

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that are legitimate (Beall, 2017). A few individuals have claimed to publish updated lists derived from
Beall’s initial work (e.g., “Stop Predatory Journals”, n.d.), whereas others have taken the opposite
approach, developing lists that include only those journals or publishers that have met their specified
criteria, which can vary greatly from one list to the next (Koerber et al., 2020; Neylon, 2017; Rob-
erts, 2017). Other organizations have been monitoring journals for several decades but have gained
added visibility in recent years with the increased attention to predatory publishing. For example,
Cabells Scholarly Analytics (CSA) has, for at least three decades, been offering fee-based access to
journal lists. These lists were previously referred to as a “Journal Blacklist” and “Journal Whitelist”
(CSA, 2017), but they have recently been renamed as “Predatory Reports” and “Journalytics” (CSA,
2020). Yet another approach has been to eschew journal lists and instead offer criteria that authors
themselves can use to assess the legitimacy and quality of a journal before they submit. One of the
most prominent of these is the Think. Check. Submit. website, which offers researchers a list of easy-
to-follow guidelines such as “Do you or your colleagues know the journal?” and “Can you easily
identify and contact the publisher?” It then advises researchers to submit to a given journal “Only
if you can answer yes to the questions on our check list” (“Think. Check. Submit.,” n.d., para. 1).
In addition to the rise of predatory journals, we are also seeing a resurgence of the vanity press.
This type of publishing requires authors to pay to have their work published and usually also requires
them to give up author publication rights. During the publication process, no peer review is prom-
ised by the publisher and no quality control is conducted. Vanity presses usually offer no editing ser-
vices, and the authors are left to do all the formatting and spell-checking by themselves. Their works
are then published, and physical copies of their books have outrageously high prices. The authors,
of course, receive no income from the sales. Vanity presses usually target young academics with no
experience, such as those who have just finished a master’s thesis. Furthermore, if the author wants
to publish their research in the form of an academic paper afterward, they are usually not permitted
to do so because of the legal contract with the vanity publisher. Whereas predatory publishers make
false claims to have a peer review process in place, vanity presses, by contrast, do not even claim to
have a peer review process. They are, therefore, usually perfectly legal businesses.
Lastly, there is also the emergence of hijacked journals. This process is undertaken by someone
who will create a counterfeit website that pretends to be the website of a legitimate scholarly jour-
nal. The website creators then solicit manuscript submissions for the hijacked version of the journal,
pocketing the money. In some cases, the legitimate versions of the journals are only published in
print form and may not have websites.
It can be difficult to navigate 21st-century publishing. With so many different resources available
and sometimes conflicting information about the best way to identify a predatory journal, health
communication researchers must remain vigilant in order to make sound decisions about where to
publish our work. As communication researchers, however, we can also play a central role in educat-
ing the larger scientific research community. For example, the first author is currently overseeing a
National Science Foundation–funded project devoted to understanding predatory publishing from
multiple perspectives. The STEM Training in Ethics of Publication Practices (STEPP) project will
eventually provide a comprehensive training program designed to teach ethical publishing practices
to researchers in STEM disciplines and other stakeholders, such as science journalists, who rely on
accurate and timely communication of scientific findings to various audiences. The project website
for this grant presents some preliminary data, including a compilation of resources that are currently
available to help authors in health communication and other disciplines navigate the complex terrain
of scholarly publishing in the 21st century (STEM Training, n.d.).
Health communication researchers are encouraged to develop scholarly publishing literacy skills
to recognize and avoid predatory publishers. They should no longer assume that all scholarly journals
are trustworthy and must be on guard against the perils of predatory publishers. Information about
predatory publishing should be part of the regular mentoring of graduate students, research fellows

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and post-docs, and junior faculty. Health communication scholars can refuse to serve on the editorial
boards of predatory publishers, which seek to enhance their reputations by creating affiliations with
scholars at reputable academic institutions. At the same time, as communication researchers, we can
also use our expertise to educate healthcare professionals, consumers, and patients on the existence
and identification of fraudulent scientific publications.

Lessons Learned
Although we have addressed a wide array of challenges in this chapter and not all such challenges
have an obvious solution, in this closing section we leave authors with some practical advice based on
lessons each of the authors has learned through their own health communication research endeavors.
The lessons we have learned center around some key themes that are present throughout all the chal-
lenges our chapter has addressed.

Research Is a Process That Depends on Building Relationships and Building

Trust With Participants and Other Stakeholders. Thus, We Need to Be
Humane
We have learned that being humane means more than just gaining IRB approval and adhering to
institutional requirements. It means always remembering that our subjects are human beings, and
they need to be treated as individuals, not just research subjects. Recruiting diverse participant
pools is essential to conducting quality research, but it also comes with an obligation to meet each
participant on their own ground, to be an effective listener, and to be willing to adapt on the spot,
even if it may seem like that will force us to scale back our expectations and goals. Along these lines,
one of the most important themes we have emphasized throughout our discussion of challenges
in health communication research is that effective research requires effective relationship building.
Whether we are conducting surveys, interviews, focus groups, or field observations, the first and
most important step is to build trust with our participants and other relevant stakeholders. Once
trust is established, the researcher must take care to maintain these positive relationships by honoring
professional commitments and treating people with respect.

Research Is an Activity That Requires Problem Solving and Adaptability. Thus,

We Need to Be Flexible
The first author is undergoing a lesson in flexibility right now with a current project that was sup-
posed to involve a combination of virtual and face-to-face interviews. When the COVID-19 crisis
began in early 2020, the research team was forced to switch entirely to virtual interviews. In some
ways, this has been beneficial as it has facilitated the recruitment of participants from across the globe
without requiring the research team to travel. But it has also presented challenges due to Internet
bandwidth issues and audio quality fluctuation. The research team has adapted by learning to use
different platforms to accommodate what works best for each participant and by using at least two
different recording tools to capture each interview; this comes from having learned that some tools
lead to better quality files than others. As this example illustrates, what a researcher says in their
initial proposal is almost never exactly the way real research plays out in practice. Kaplan (1964) use-
fully captures this in his distinction between “logic-in-use,” or the process through which scientific
inquiry is used to test hypotheses, and “reconstructed logic,” or the intellectual work through which
hypotheses are developed. To allow both of these forms of scientific inquiry to build off each other,
rather than cause limitations, we must be transparent about the differences between the two. Addi-
tionally, we must be flexible and willing to understand that good research almost always involves

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some amount of adaptation, problem solving, and redirection of our original focus. In Kaplan’s
terms, we must be willing to continually embrace the process of reconstructing our logic and to
not be bound to our original line of thinking, while simultaneously acknowledging the weight of
previous knowledge.

Research Requires a Mindset That Understands the World From Diverse

Perspectives. Thus, We Must Embrace and Seek Out Multiple Perspectives
As qualitative researchers, both authors have learned that the most effective health communication
study is one that acknowledges many different perspectives on a problem. This can be accomplished
through effective sampling methods (Koerber & McMichael, 2008) and also by taking the extra
effort that is needed to recruit international participants and achieve global understandings of health-
related subjects, even when we are studying a situation that initially seems to be located in our own
community.

Research Is an Ethical Endeavor That Is Contingent on Geographic Location

and Other Contextual Factors. Thus, We Must Be Mindful of Ethics in Every
Phase of Our Research
Ethics are integral throughout the entire research process, beginning with the selection and treat-
ment of participants and extending through to the end of the research project when it comes time
to publish our findings. With the rapid growth that has occurred in the scholarly publishing industry
and the increasing ease of access that comes with Internet publishing, researchers may be increasingly
tempted to use less credible publishing sources, especially when journal editors promise a rapid review
and high visibility to authors who are eager to get their work disseminated to a wide audience. More
than any of the other challenges we have addressed, the scholarly publishing challenge is growing
every day, as journals continue to proliferate and as the publishing industry finds new ways to persuade
uninformed authors through predatory solicitation efforts. Although we have suggested a few current
resources, we encourage health communication researchers to remain aware of new developments and
to become educated on the politics and ethics of scholarly publishing in the 21st century.

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 INDEX

Note: Page numbers in italic indicate a figure and page numbers in bold indicate a table on the corresponding
page.

academic disciplines 183, 189 public health communication campaigns 340; and
access: and community-based health interventions social support 139
353 – 355, 357 – 363; and decision-making 416; age, health information seeking behaviors 402
to engagement with health information and agency 80 – 81, 428 – 430, 459, 469
platforms 434 – 435; and ethical issues 511 – 513; aging 92 – 93, 415 – 416
and global health communication 457 – 459; aHealth 385 – 387
and health information seeking 399 – 400; AIDS see HIV/AIDS
and imbalances of power 524 – 525, 530; and ambiguity 51, 297, 319
informal caregivers 93; and intercultural health American Indian/Alaskan Native 25, 494,
communication 443, 447; and mental health 529 – 531, 587
64; and palliative care 130 – 131; and research arts engagement interventions 98 – 99
581 – 582, 587 – 589, 594 – 596; and the role of attitudes: consumer advertising 295 – 296;
technology 390 – 391; and social media 304 – 306, and the environment 492 – 496; and global
312; and social support 140; and stigma 78; and health communication 463 – 464; improving
structural influences 429 – 433; and technology- communication skills 199 – 205, 200, 202; and
based interventions 374 – 375 media 277 – 278, 281 – 283; and mental health
action agendas 540 – 545 68 – 69; and misinformation 324 – 326; and public
adherence 188 – 189, 213 – 222, 369 – 370 health communication campaigns 335 – 336,
advanced practice nurses 229 – 230 339 – 342; and research 559 – 565; and technology-
advertising 290; to children and teens 297 – 298; based interventions 372 – 373
corporate social responsibility (CSR) 296 – 297; audience: and community-based health interventions
direct-to-consumer (DTC) 294 – 295; future 355 – 356, 360 – 362; and media 283 – 284;
research 298 – 299; message features and effects and mental health 67 – 70; and public health
292 – 294; regulations and guidelines 290 – 292; communication campaigns 335 – 344, 346 – 349;
weight loss, nutrition, and identity 295 – 296 and research 35 – 39, 42 – 43; and structural
affection exchange theory 95 influences 429 – 430; and technology-based
African Americans 25, 28; and community-based interventions 367 – 370, 373 – 375
health interventions 355; and decision-making autonomy: and difficult conversations 186 – 189;
416; and health information seeking 403; and ethical issues 507 – 509, 511 – 516, 518; and
and imbalances of power 522, 524 – 526; and intercultural health communication 449 – 450;
informal caregivers 93; and intercultural health and mutual persuasion 166 – 167, 172 – 174; and
communication 442 – 443, 448; and media 278, the role of technology 387 – 388; and stress and
281; and misinformation 320 – 321; and narrative burnout 264 – 265
50; and patient-provider communication 219; and avoiding harm 507, 515, 518

601
 Index

awareness messages 336, 340, 343 – 344 channel selection 36, 345
axiology 19 chaplains 232 – 233
charged topics 181 – 182
bad news delivery 179 – 180, 183 – 184, 184 Charon, Dr. Rita 52
behavior change 12, 338 – 341, 373 – 375, 386 – 387, children 416 – 417
457 – 465; social and behavior change (SBC) 458, chronic conditions: managing everyday
464 – 465 communication work about 155 – 158
beneficence 167, 507 clinical evidence 170, 320, 323
bias 24, 220, 238, 450 – 451 clinical outcomes 213 – 214, 220
blame 84, 215, 267, 491, 516, 522 collaboration see interdisciplinary health
body image 280 communication approaches; multidisciplinary
botanicals see dietary supplements health communication approaches;
boundary crossing 510 – 511 transdisciplinary health communication approaches
built environments 246 – 247, 252 collaborative decision-making 170 – 171
burnout 259; dimensions of 264 – 265; emerging collaborative field of inquiry 4 – 5
job stressors within healthcare professions collective efficacy 358, 360, 362, 496, 515
259 – 262; enduring job stressors within healthcare COMFORT communication mode 121 – 129,
professions 262 – 264; ideas for future research 122 – 130
268 – 269; outcomes of 265 – 267; supportive communication-based interventions 362
communication within the health professions communication competence 248 – 249, 251, 254, 387
267 – 268 communication, health, and equity: structural
influences 426, 428 – 434, 436
campaign design 336 – 337 communication inequalities 358, 426 – 436, 483
cancer 8 – 12, 21 – 26, 573; and everyday interpersonal communication infrastructure theory 358
communication 153 – 158; and family health communication load 260 – 261
communication 106 – 107; and health information communication privacy management theory 183
seeking 402 – 404, 406 – 407; and imbalances communication research: challenges in conducting
of power 530 – 531; and intercultural health 587 – 598; defining 19 – 20; issues and controversies
communication 442 – 443, 445 – 447; and media in research design and data analysis 558 – 568;
281 – 282; and misinformation 319 – 325; and at the level of government, foundations, public
multiple voices 235 – 237; and mutual persuasion policy, and NGOs 572 – 583
169 – 174; and narrative 48 – 51, 53 – 56; and communication science 39 – 43
palliative care 119 – 121, 123 – 125; and public communication skills programs (CSPs) 194 – 195,
health communication campaigns 337 – 338, 202; assessment and evaluation of 199 – 200;
341 – 342; and research 42 – 43, 572 – 576, 579 – 592; challenges in developing 206 – 207; cultural
and social media 305 – 307; and social support 201, 203 – 206; future directions for research
138 – 139, 141 – 142 on 207 – 208; humanistic 201 – 203; for patients
capacity building 28, 359, 460, 476 – 477, 591; 200 – 201; pedagogical methods used in 197 – 199;
communication capacity-building 357 – 359 philosophical underpinnings of 195; across stages
caregiver communication 92 – 93 of clinical education 195 – 197
caregiver health 93 – 97 communication theory 37 – 38
caregiver’s health outcomes 97 – 99 communication theory of knowledge brokering 358
caregiving contexts 95 communication work/labor 155 – 156
care-recipient communication 92 – 93, 93 – 97 communitarianism 508
care-recipient’s health outcomes 97 – 99 community-based approaches 421
celebrity impact 282 – 283 community-based arts engagement interventions
Centers for Disease Control and Prevention (CDC): 98 – 99
and conversation analysis 539; and global health community mobilization 429
communication 461; and imbalances of power community organizing 491
522, 527; and media 282; and public health community outreach 360, 575
communication campaigns 337; and public comparative study 459 – 462
health crises 475, 478, 480; and research 42, 564, competency-based medical education (CBME)
573 – 574, 579 – 580; and social media 308 – 309 195, 207
Centers of Excellence in Cancer Communication completeness 567
Research (CECCRs) 576 – 577 compliance 78, 215, 263, 268, 342 – 343, 444, 542,
certified nurse aides (CNAs) 229, 231, 238 551 – 552, 573; see also adherence
challenging contexts 180 – 181 comprehensibility 359, 403, 477, 508, 581, 592
change, catalyzing 53 – 56 computer-mediated communication 20, 140 – 143

602
 Index

computer-mediated support 137, 141 – 142, 387 measurements 417; health literacy paradigms
condoms 283, 561 414 – 415; and intercultural health communication
confidentiality 180, 246, 312, 383, 508 443 – 444; and mutual persuasion 166 – 167,
confrontation 109, 115 170 – 174; and palliative care 120 – 122, 128 – 129,
contact interventions 84 – 85 132 – 134; and patient-provider communication
continuing medical education (CME) 197 214 – 216; populations of special interest 415 – 417;
control theory 108 – 109 and social support 141 – 143
conversational agents 385 – 386 deficit perspective 414 – 415
conversation analysis 539 – 540, 552 – 553; action deliberative model 40 – 41, 40
agendas 540 – 545; intervening in medical action dependent variables 312, 561 – 562, 566 – 568
551 – 552; intra- and extra-visit outcomes of depersonalization 265
action 550 – 551; position of actions relative to depriving 517 – 518
medical activities 547 – 550; sequence organization descriptive norms 296, 309, 355
545 – 547 developing countries 280, 304, 320, 457
corporate social responsibility (CSR) 296 – 297 diagnosis, emplotment process 48, 52
cost 185 – 188 dialogic space 450 – 451
cost-effectiveness 97 – 98, 182, 376, 463, 514, 583 didactic methods 198
counselors, genetic 234 – 235, 282 Dietary Supplement Health and Education Act
counter-narratives 48, 55 – 56, 357 (DSHEA) 295
COVID-19 pandemic: case study 467 – 468; and dietary supplements 295, 299
ethical issues 512 – 513; and everyday interpersonal dieticians 236
communication 152 – 153; and family health difficult conversations: future research on 189 – 190;
communication 105, 113 – 115; and global health strategies for successfully engaging in 185 – 189;
communication 457, 459, 468 – 469; and health theories and methods for studying 182 – 185; types
information seeking 399, 407; and imbalances of of 179 – 182
power 522, 524 – 525, 530; and media 284; and diffusion of innovation (DOI) theory 38,
mental health 71; and misinformation 320 – 323; 152 – 153, 401
and multiple voices 237 – 238; and public health digital divide 375, 434 – 435, 511
communication campaigns 335, 340, 344, 348, digital media 421
349n1; and public health crises 475 – 480, 483; direct-to-consumer (DTC) advertising 290,
and research 39, 43, 558, 592 – 594, 597; and 294 – 295, 320, 328
the role of technology 381, 383, 391; and social disability 522 – 524
media 304 – 308; and stigma 77 – 78; and stress and disciplinary encroachment 413 – 414
burnout 268; and structural influences 434 disclosure 68 – 69, 156 – 157, 179 – 180, 183 – 189,
credibility 292 – 297, 343 – 346, 389 – 391 449 – 450
Crenshaw, Kimberlé 26 disease prevention and treatment 367; disparities and
crisis communication see public health crises technology-based health communication 375 – 376;
critical cultural communication 21 – 23 effectiveness of technology-based interventions
critical health literacy 420 369 – 371; elements of influencing intervention
cross-national theorizing 459 – 462 effectiveness 371 – 373; future directions for
cultural fusion 450 – 451 research and practice 376 – 377; an overview of
cultural sensitivity 24, 67, 232 – 233, 417, 421, 442 technology-based interventions and important
culture 24 – 25, 441; future research directions considerations 367 – 369; relevant principles of
451 – 452; as group 441 – 443; as a living process effective health communication 373 – 375
449 – 451; as speech community 443 – 446; as disrupting 54 – 55
worldview 446 – 451 dissemination strategies 38
culture-centered approach (CCA) 56 – 57, 450 – 451, donors 460 – 461
457, 483, 526 drug abuse 312 – 313, 357; Drug Abuse Resistance
customization 338 – 339, 387 – 390 Education (D.A.R.E.) 357
dying 126 – 127, 130 – 132
data collection 27 – 28, 564 – 565
death 22 – 23, 112 – 114, 120 – 121, 509 – 510 ecological considerations 11 – 12
decision-making 421 – 422; applicable health literacy ecological influences 427 – 429, 434
models 417 – 419; case example of a health literacy education: and decision-making 413 – 414;
campaign 419 – 420; disciplinary encroachment and entertainment-education 283 – 284; and imbalances
questions of territory 413 – 414; and ethical issues of power 527 – 529, 532 – 534; improving
512 – 513; future research directions 420 – 421; communication skills 194 – 199, 202 – 207; and
health literacy defined 412 – 413; health literacy intercultural health communication 457 – 460;

603
 Index

and mental health 69 – 70; and misinformation engagement perspective 415

326 – 327; and multiple voices 229 – 236; and engaging 54
narrative 53 – 55; and palliative care 132 – 133; and entertainment-education 283 – 284, 345 – 346
public health communication campaigns 345 – 348; entertainment media 68 – 70
and social media 308 – 313; and stigma 83 – 84; and environmental concerns, depictions of 279 – 280
structural influences 435 – 436; and technology- environmental health and justice movements
based interventions 375 – 376 498 – 499
effective implementation 41 – 43 environmental health literacy 493 – 494
effectiveness: consumer advertising 292 – 293, epistemology 11 – 12, 18
296 – 297; elements of influencing intervention equity concerns 511 – 512
effectiveness 371 – 373; future directions for errors in care 248 – 251
research and practice 376 – 377; and global health esteem support 138 – 139
communication 463 – 464; and media 283 – 284; ethical issues: clinical settings 508 – 511; in digital
and public health communication campaigns media and social media platforms 511 – 514;
335 – 342; relevant principles of effective health ethical approaches and guiding precepts 507 – 508;
communication 373 – 375; and research 35 – 36, in information campaigns and social marketing
575 – 576; and social support 137 – 138; and stress 514 – 518
and burnout 265 – 266; of technology-based ethnicity 150 – 151, 219 – 220, 402 – 403, 426 – 427,
interventions 369 – 371 442 – 444
eHealth 382 – 383 ethnography 11 – 12
eHealth literacy 403, 421, 514 evaluation 199 – 200, 200, 347 – 348
elaboration likelihood model 183, 374 everyday interpersonal communication (everyday
electronic health records (EHRs) 41 – 43, 219, IPC): about health and illness 159; about illness
259 – 260, 354 and chronic conditions 155 – 158; influence on
e-mail 254, 595 health behaviors and decisions 152 – 155; people,
emotion: and difficult conversations 179 – 186, topics, and channels involved in 149 – 152
189 – 190; emotional exhaustion 265; and the evidence 8 – 9, 11 – 13; and conversation analysis
environment 495 – 496; and ethical issues 515 – 517; 541 – 542, 550 – 552; and the environment
and everyday interpersonal communication 493 – 494; and global health communication
150 – 152, 156 – 157; and family health 456 – 457, 464 – 469; and health information
communication 110 – 111; and global health seeking 403 – 404; and interprofessional
communication 461 – 462; health issues 93; and communication 245 – 246; and mental health
informal caregivers 98 – 99; and intercultural 69 – 70; and misinformation 322 – 329; and mutual
health communication 442 – 445; and multiple persuasion 165 – 166, 169 – 173; and public health
voices 234 – 235; and mutual persuasion 165 – 166; communication campaigns 342 – 343; and public
and narrative 50 – 52; and patient-provider health crises 475 – 478, 483 – 484; and research
communication 220 – 222; and research 562 – 563; 36 – 39, 41 – 43, 581 – 583; and social media
and social media 306 – 309; and social support 310 – 311; and social support 138 – 139; and
136 – 143; socioemotional communication structural influences 433 – 434; and technology-
250; and stigma 83 – 84; and stress and burnout based interventions 368 – 371
262 – 268 exaggeration 323, 325, 515
emotional appeals 495, 515 exchange theory 95
emotional benefits in caregiving contexts 95 – 96 expectancy-value mechanism 341
emotional health issues 93 experiential methods 198 – 199
emotional labor 263 exposure, media campaigns 7, 337 – 338
emotional support 136 – 139, 141 – 143, 306 – 307 expressive writing interventions 98
emplotment 52 extended parallel process model 309, 401
empowerment 141 – 142, 461 – 462
enacting 81 – 82 family 19 – 21, 105; concerns and controversies
end-of-life health communication: communicating 129 – 132; and ethical issues 508 – 510; and
about palliative care with patients and families everyday interpersonal communication 149 – 151,
120 – 129; directions for future research 132 – 133; 155 – 159; family defined and family factors that
patient/family communication barriers 130 – 131; influence health communication 106 – 115; and
provider communication barriers 129 – 130; global health communication 463 – 467; and
supply and demand barriers 131 – 132; system imbalances of power 526 – 528; and informal
communication barriers 131; understanding caregivers 91 – 97; and intercultural health
palliative care 119 – 129 communication 444 – 445; and mental health
engaged partnerships 43 66 – 67; and multiple voices 229 – 236; and mutual

604
 Index

persuasion 171 – 175; and narrative 47 – 56; and contributions through a selection of qualitative
social support 136 – 139; and stress and burnout findings 540 – 550; ethical approaches 507 – 508;
260 – 267; understanding palliative care 119 – 129 ethical issues in health communication in digital
family health histories 150 media and social media platforms 511 – 514; ethics
family meeting 233 in information campaigns and social marketing
fear appeals 341 – 342, 495, 515 – 516 514 – 518; gaining access to participants and
federal government 529, 573, 576 settings 587 – 589; from interaction to outcomes
feedback 198 – 199, 356 – 357, 372 – 374, 419 – 420, 550 – 552; issues in model development and testing
579 – 580 565 – 566; Latinx and health communication
focal behaviors 336 526 – 528; LGBTQ+ and health communication
focal segments 336 531 – 534; machine learning and natural language
focus group testing 337 processing methods 562 – 564; measurement
formative research 373 – 374 problems related to key variables 559 – 562; Native,
Indigenous, American Indian/Alaskan Native
gaming 298, 313 and health communication 529 – 531; statistical
gender 442 – 443, 445 – 446, 451, 516 – 517, 531 – 533 challenges 567 – 568; staying abreast of scientific
genetic counselors 229, 234 – 235, 282 knowledge production 592 – 598; transcription
global theories 461 – 462 conventions 556 – 557; working in communities
governmental organizations 497 589 – 591; working internationally 591
graduate medical education (GME) 197 health communication theory 313, 479, 576
health devices 390
handoff communication: theoretical framework health disparities 204 – 205, 428 – 436, 443 – 448,
248 – 249; tools to facilitate 250 – 251 522 – 524; and African Americans 524 – 526; and
handoff research 249 – 251 Latinx 527; and LGBTQ+ 532, 534 – 535; and
health and wellness 28, 111, 149, 152, 159, 296, Native, Indigenous, American Indian/Alaskan
381, 387 Native 529 – 530
health behaviors and decisions 152 – 155 health games 386 – 387
health belief model (HBM) 152 – 154, 341, 402, 457 health information channels 404
health beliefs 324 – 325 health information exchanges 434
health campaigns see media campaigns; see also Health Information National Trends Survey
interpersonal influence (HINTS) 318, 338, 345, 580; and health
healthcare, narrative nature 48 – 49, 56; humanizing information seeking 399, 403; and the role of
51 – 53 technology 381, 384; and social media
healthcare providers 35; consumer advertising 305 – 309
292 – 294; and ethical issues 508 – 513; and health information seeking (HIS) 399 – 400; channels
everyday interpersonal communication 154 – 155; 404 – 405; conceptual challenges and theories
future research on difficult conversations of 406 – 407; contexts 402; definition of 400;
189 – 190; and imbalances of power 533 – 534; and measures of HISB 404; methodological advances
intercultural health communication 447 – 450; in 405; populations 402 – 403; research methods
and mental health 65 – 68; and misinformation 403 – 404; state-of-the-science review of HIS
319 – 321; and multiple voices 230 – 233; and research 400 – 401; theories 401 – 402
palliative care 120 – 123, 129 – 133; and patient- health information sources 318, 391
provider communication 213 – 221; and the role health information technology 41 – 43, 354 – 355
of technology 382 – 387; strategies for successfully Health Information Technology for Economic and
engaging in difficult conversations 185 – 189; and Clinical Health (HITECH) Act 580
stress and burnout 259 – 269; theories and methods health insurance 64, 264, 427, 448, 466, 533
for studying difficult conversations 182 – 185; health interventions 353, 362 – 363; communication
types of difficult conversations 179 – 182; see also capacity-building interventions 357 – 362;
healthcare teams community norms-based health communication
healthcare provider satisfaction 266 interventions 355 – 357; health information
healthcare teams 229 – 234, 236 – 238, 244 – 247, technology interventions 354 – 355
252 – 254, 264 – 265, 268 – 269 health literacy 21 – 22, 64 – 65, 124 – 125, 412,
health communication curricula 195 – 201 421 – 422; applicable models 417 – 419; case
health communication research 522 – 524, 539 – 540, example 419 – 420; defined 412 – 413; disciplinary
558 – 559, 572 – 582; addressing institutional encroachment and questions of territory 413 – 414;
review board concerns 591 – 592; African future research directions 420 – 421; measurements
Americans and health communication 524 – 526; 417; paradigms 414 – 415; populations of special
clinical settings 508 – 511; conversation-analytic interest 415 – 417

605
 Index

health messages 312 – 313, 338 – 340, 412 – 415, Improving Contraceptive Method Mix (ICMM)
429 – 430, 494 – 495, 560 – 566; diversity in Project 465 – 467
281 – 282; entertainment-education 283 incentive appeals 340 – 342
health misinformation 327 – 328; characteristics of inconsistent nurturing as control (INC) theory
322 – 324; directions for future research 328 – 329; 108 – 109
impact of 324 – 325; mitigation of the impact independent variables 559 – 560
of 325 – 327; prevalence of 321 – 322; sources of Indigenous 204, 233, 441, 464, 495, 498, 522 – 523,
319 – 321; health information communication 529 – 531; see also American Indian/Alaskan Native
technologies (HICTs) industry 497 – 498
health narratives 109 – 111, 172, 498 inequalities 427 – 434
health organizations 498; research in 259 – 269 inequity 93 – 94, 354, 469, 498, 512, 526
health outcomes, health communication, pathways infectious diseases 478
linking 222 influences, structural 426; access to and engagement
health promotion 367; disparities and technology- with health information and platforms 434 – 435;
based health communication 375 – 376; communicating disparities 435 – 436; ecological
effectiveness of technology-based interventions influences, health communication, and inequalities
369 – 371; elements of influencing intervention 427 – 429; how culture and communication
effectiveness 371 – 373; future directions for influence health and inequalities 429 – 431; how
research and practice 376 – 377; limitations related ecological influences manifest at the individual
to technology-based health interventions 376; level 434; policies, inequalities, and health
overview of technology-based interventions communication 432 – 433; racism 431 – 432; social
and important considerations 367 – 369; relevant drivers of inequalities 427; socially constructed
principles of effective health communication harms 431 – 432; social networks, interpersonal
373 – 375 communication, and health inequalities
health system restructuring 261 – 262 433 – 434
health wearables 386 influential source messages 344 – 345
Healthy People: 2020 6, 532; 2030 34 informational support and advice 139
hidden curriculum 199 information exchange perspective 244 – 246,
high-stakes decisions 181 249 – 250
HIV/AIDS 10, 237, 458, 461, 482 information management 444 – 445
home health 120 information processing 37, 260, 390, 431
homophily 22 – 23, 253 – 254 information seeking 495 – 496; see also health
hospice care 50 – 52, 119 – 121, 127 – 132, 230 – 235 information seeking
hospital restructuring 261 – 262 informed consent 449 – 450
hostile lived environments 448 – 449 injunctive norms 296, 355
housekeeping staff 229, 236 – 238, 244 innovation 312 – 313, 558 – 559
human-caused disasters 479 innovation diffusion 38, 152 – 153, 401
humanism 201 – 203 innovative methods 27 – 28
humanization 51 – 53 institutional review boards (IRBs) 591 – 592
human papillomavirus (HPV) 10, 25, 236, 326, instructional messages 343 – 344
552, 563 integrated model for health literacy 418 – 419
integrated programs 463 – 464
identities 24 – 26; and difficult conversations intended responses 339 – 340
179 – 182, 188 – 189; and the environment interactional context 553
492, 497 – 499; and everyday interpersonal interactivity 371 – 373, 390 – 391
communication 155 – 156; and family health intercultural communication 24, 203
communication 108 – 109; and imbalances of interdisciplinary health communication approaches
power 523 – 524, 526 – 527, 529, 531 – 533; 4, 7 – 13
improving communication skills 204 – 205; and Internet 304 – 309, 318 – 319, 381 – 382, 389 – 390
informal caregivers 92 – 93; managing 157 – 158; interpersonal communication 20 – 21, 66 – 67, 81;
and narrative 50 – 51, 55 – 56; and social support see also everyday interpersonal communication
140; and stigma 83 – 86; and stress and burnout interpersonal influence 154 – 155, 346 – 347
261 – 262; and structural influences 429 – 430; and interpersonal messaging 153 – 154
weight loss and nutrition 295 – 296 interpretive communication 21 – 23
illness: family communication patterns concerning intersectionality 17, 26
111 – 112; managing everyday communication intertextuality 48
work about 155 – 158 interventions 97 – 99
impact at scale 462 – 465 investigator-initiated research portfolio 577 – 579

606
 Index

keepin’ it REAL (kiR) 357 metatheory 18

knowledge: and communication theory 37 – 38; methodological diversity 27 – 28
knowledge to action (K2A) framework 35; methodological matters 24 – 29
knowledge-practice gap 39 – 43; knowledge mHealth 383 – 385
synthesis 581 – 582, 582; knowledge translation mindfulness-based interventions 97 – 98
37 – 38, 41 – 43 misinformation (defined) 484; see also health
misinformation
labeling 80, 515 misrepresentation 174, 186, 319, 509, 523, 540
labels 291 – 292 missing data 567
language: barriers 443 – 444; and imbalances of mobile apps 384
power 526 – 529, 532; and interprofessional mobile devices 367, 374, 377, 385
communication 248 – 250; and mental health mobilizing 54 – 55
64 – 65; and palliative care 120 – 121, 130 – 131; moral dilemmas 114 – 115
and research 36 – 43, 589 – 592; role in translational morality 113 – 115
science 36 – 38 multidisciplinary health communication approaches
Latinx 64, 108, 278, 523, 526 – 528 3 – 7, 9 – 13
lectures 198 multileveled field of inquiry 4 – 5
LGBTQ+ 64, 106, 281, 442, 450, 523, 528, multilevel models 566
531 – 534 multiple appeals 342
licensure 230 multiple regression 566
limited English proficiency 443 – 444, 446 multiteam systems (MTS) 251 – 253
listservs 20 mutual persuasion 167 – 174, 169
locus of control 468
longitudinal research 27 narrative medicine 12, 52 – 53, 57
narratives 47 – 48; catalyzing change 53 – 56;
machine learning 562 – 564 continuing the conversation 56 – 57; fostering
malpractice 218 – 219, 449 well-being 49 – 51; humanizing healthcare 51 – 53;
Manganello’s model of health literacy 418 narrative features and forms 48 – 49; transcendence
marks as intrinsic features of a stigma message 79 of 12 – 13; see also health narratives
mass media 309 – 310, 322, 457 – 460 National Cancer Institute (NCI) 53, 282, 360, 403,
masspersonal communication 22 – 23 572 – 576, 579 – 580; Journal of the National Cancer
master narratives 48, 55 Institute 576, 580
media 67 – 70; see also mass media National Institutes of Health (NIH) 577 – 578,
media campaigns 7, 11, 25, 336, 344 – 345, 418, 477 577 – 578
medical education 533 – 534; competency-based Native see American Indian/Alaskan Native;
medical education (CBME) 195, 207; continuing Indigenous
medical education (CME) 197; graduate medical natural disasters 478 – 479
education (GME) 197; undergraduate medical natural language processing methods 562 – 564
education (UME) 196 negative appeals 341, 347, 495
medical information 114, 172, 390, 399, 541 networks and multiteam systems 253
medicalizing 55, 205, 294, 533 news media 67 – 68, 325, 435, 490 – 491
medical outcomes 37, 448, 550 new technologies 284, 313 – 314, 349, 391, 404,
medical storytelling 52 406 – 407, 594
medicine as culture 446 – 447 nongovernmental organizations (NGOs)
mental benefits in caregiving contexts 95 – 96 496 – 497
mental health 533; diagnosis and treatment 64 – 66 nonlinear relationships 567 – 568
mental healthcare disparities 64 nonverbal communication 79, 214, 217, 222
mergers and acquisitions 261 norms: community norms-based health
message: and community-based health interventions communication interventions 355 – 357; and
355 – 357; consumer advertising 290 – 294; and the consumer advertising 296; and the environment
environment 489 – 497; and media 283 – 284; and 499; and ethical issues 508, 514 – 517; and global
public health communication campaigns 335 – 345; health communication 468; and imbalances of
and research 559 – 562, 565 – 566; and the role of power 531 – 532; and public health communication
technology 381 – 382, 388 – 389; and stigma 78 – 80, campaigns 341 – 343; and research 558 – 559;
84 – 85; and technology-based interventions and social media 309 – 310; and stigma 79; and
370 – 374 structural influences 429 – 431
messenger 344 – 345 numeracy 238, 413, 417
metaphors 37 – 40 nurse practitioners 230

607
 Index

nurses 120 – 124, 127 – 132, 194 – 196, 218, 229 – 233, influence 167; the role of influence in 166 – 167;
244 – 253, 260 – 267; certified nurse aides (CNAs) toward shared mind 174 – 175
229, 231, 238 patient/family communication barriers 130 – 131
nurse scientists 230 – 231 patient handoffs 248 – 251
Nutbeam’s model of health literacy 418 patient history 259 – 260
nutrition 295 – 296 patient-provider interaction 181, 266, 587 – 588; see
also patient-provider relationship
obesity 78 – 80, 220 – 221, 525 – 526; childhood patient-provider relationship 186, 213; future
527 – 529 research 222; importance of health outcomes
observational research 27 213 – 215; and malpractice 218 – 219; obesity
occupational therapists 234, 252 and weight status 220 – 221; pathways from
older adults 64, 313, 328, 355, 375, 415 – 416, 494 communication to outcomes 221 – 222; and patient
omission 85, 291 adherence 215 – 217; and patient satisfaction
online contexts 140 – 142 217 – 218; race/ethnicity 219 – 220; socioeconomic
online discussion groups 382 status 220; substance use 221
online health 142, 306 – 307, 318 – 319, 387 – 391, patient satisfaction 217 – 218, 220 – 222, 442 – 443, 448
421; use patterns of 387 patient variables contributing to disparities in
online support groups 140 – 142, 307, 387, 389 provider-patient communication 219 – 221
ontology 18 peer group see social networks
opening primary care visits 547 – 549 people of color 269, 281, 498, 523, 534 – 535; see also
opinion leaders 38, 155, 343, 346, 590; the role and ethnicity; race; and specific racial and ethnic groups
function of 152 – 153 perceptions: celebrity impact on 282 – 283; and
optimal matching model 22 consumer advertising 292 – 298; and difficult
oral communication skills 413 conversations 186 – 190; and the environment
organizational communication 8, 27, 499 489 – 496; and family health communication
organizational culture 249 108 – 113; and informal caregivers 93 – 94,
organizational factors 476 – 477 97 – 99; and media 277 – 280; misperception
organizational learning 481 – 483 correction 326 – 327; and public health
organized systems 431 communication campaigns 337 – 340; and
outcomes 91 – 92; caregiver health and caregiver- the role of technology 382 – 384; and social
recipient communication 93 – 97; future media 308; and structural influences 429 – 430,
research 99 – 100, 222; importance of 213 – 215; 434 – 435
interventions and research-based programming to personal accomplishment, reduced 265
improve caregiver’s and care-recipient’s personal personal benefits in caregiving contexts 95
and relational health outcomes 97 – 99; malpractice personal responsibility 492, 516 – 517
and communication 218 – 219; obesity and weight persuasive messages 299, 336, 340
stigma 220 – 221; pathways from communication PESO model 337
to 221 – 222; physical issues 92 – 93; provider- pharmaceutical industry 528
patient communication and patient adherence pharmaceuticals 320, 325, 414, 528, 581
215 – 217; provider-patient communication pharmacists 235 – 236
and patient satisfaction 217 – 218; psychological physical health issues 92 – 93
and emotional health issues 93; race/ethnicity physical space, restructuring see health system
219 – 220; socioeconomic status 220; substance restructuring
use 221 physical therapists 207, 216, 252
physician assistants 232, 252
palliative care 119; concerns and controversies ahead physician-patient communication 187 – 188, 213 – 217
129 – 132; future research 132 – 133; understanding physicians 231 – 232
palliative care 119 – 129 policies 432 – 433
pandemic: H1N1 530; 1918 flu 530; see also political ideology 492 – 493
COVID-19 pandemic positive appeals 341 – 342
paradigmatic research 20 – 24 positive social values 517
paradigms 19 potential harm concerns 513 – 514
parallel charts 52 praxeology 19
patient adherence 215 – 217; see also adherence; precision messaging strategies 37 – 38
compliance preference organization 546 – 547, 553
patient-centered communication 165 – 166; future prescription drugs 290, 294, 544
directions 175; mutual persuasion as 167 – 174; prevention 367; disparities and technology-based
persuasion in clinical encounters as individual health communication 375 – 376; effectiveness of

608
 Index

technology-based interventions 369 – 371; elements recreational therapists 234

of influencing intervention effectiveness 371 – 373; reductionism 203 – 204, 207
future directions for research and practice reimbursement 206
376 – 377; limitations related to technology- relational benefits in caregiving contexts 95 – 97
based health interventions 376; an overview of relational dialectics theory 94, 183
technology-based interventions and important religion 447 – 448
considerations 367 – 369; relevant principles of reporting standards 28 – 29
effective health communication 373 – 375 research-based programming 97 – 99
primary care 131 – 133, 251 – 253, 546 – 547 resilience 112 – 114
print materials 458 respect 507 – 09
privacy 182 – 183, 312 – 313, 388 – 392, 510 – 513; responsibility 115 – 116, 250, 491 – 492; appeals to
managing 156 – 157; and quality and access 516 – 517; corporate social responsibility (CSR)
390 – 391 296 – 297
problem presentation 541 – 542, 553 rhetorical tradition 77
process: communication as 565; culture as a living risk and benefit perceptions 493
process 449 – 451; research as 597 risk communication 467 – 468, 475 – 478
processing, information 37, 260, 431 – 432, 490 risk messages 515 – 516
promotion 367; disparities and technology-based risky behavior, depictions of 281
health communication 375 – 376; effectiveness role modeling 199, 342, 346 – 347, 516
of technology-based interventions 369 – 371; role play 198 – 199
elements of influencing intervention effectiveness role stress 259, 262, 268 – 269
371 – 373; future directions for research and rural communities 416
practice 376 – 377; an overview of technology-
based interventions and important considerations sample representativeness 25 – 26
367 – 369; relevant principles of effective health scientific communication 20 – 23
communication 373 – 375 scientific knowledge production 592 – 598
protection motivation theory 341 screening 42 – 43, 573 – 574, 582
protest campaigns 280, 498 segmentation 514
protocol for breaking bad medical news self-efficacy 141 – 142, 199 – 200, 356 – 357, 386 – 388,
(SPIKES) 183 418 – 420
provider communication barriers 129 – 130 self-report measures 199 – 200, 215 – 216, 404, 559
provocation tactics 515 – 516 sensemaking 109 – 111
proximity 246 – 247 sensitive disclosures 180
psychological health issues 93 sensitive topics 509 – 510
public health communication campaigns 335 – 336, sequence organization 540, 545 – 547, 553
348 – 349; approaching campaign design 336 – 337; sexual orientation 26, 78, 430
influencers and the health environment 346 – 348; shame 509 – 510; and coping 82 – 83
intended audiences 337 – 339; intended responses shared mind 174 – 175
339 – 340; message types 340 – 345; selecting sharing information 42 – 43, 152
appropriate channels and formats 345 – 346 simulated patients 198 – 199
public health crises 475; current state of public health sincerity 139, 508
crisis communication 476 – 478; future research social action 443, 540
483 – 484; theoretical bases for 479 – 483; types of social and behavior change (SBC) 458, 464 – 465; see
478 – 479 also behavior change
public health policy 55 social capital 23, 433, 458
public relations 497 social cognitive theory 69, 310, 374
social comparison 141
qualitative methods 19, 27, 137, 214, 381 social construction of environment and health
quality of care 129, 131, 230, 442 – 447, 513 – 514 489 – 492
social determinants 353 – 354, 402 – 403, 414 – 416,
race 150 – 151, 402 – 403, 426 – 427, 430 – 431, 426 – 427, 435 – 436; see also social determinants of
442 – 443, 499 – 500, 531 – 532 health
racism 426 – 427, 430 – 432, 522 – 524, 526 social determinants of health 115, 233, 238,
rationality 446 353 – 354, 363, 436, 535
readiness 154, 337, 359, 361, 548 social influence 245, 348, 357
readings 198 socialization 108 – 109
RE-AIM framework 35 – 36 socially constructed harms 431 – 432
REAL media 357 social marketing 54 – 55, 507 – 508, 514 – 518

609
 Index

social media 70, 304; and crisis communication in structural influence model (SIM) 358, 401 – 403, 428
public health 308; directions for future health structure 205 – 206; deep structure of culture 430
312 – 314; and health campaigns 309 – 310; and substance use 54, 108 – 109, 221; substance use
health information and health services 305 – 306; prevention 356 – 357
and health information seeking 404 – 405; and suicide 67 – 70
psychological well-being and mental health supply and demand barriers 131 – 132
310 – 311; and research methodology in health supportive communication 136 – 137; future
communication 311 – 312; and supportive directions for research on 142 – 143; and health
communication and online health communities 137 – 140; in online contexts 140 – 142
306 – 307 surveillance research 579 – 581
social networks 11, 150; and consumer advertising sustainability 462 – 465
298; and everyday interpersonal communication syphilis 528
153; and global health communication 458; and system communication barriers 131
health inequalities 433 – 434; and mental health 63; systems theory 106 – 107, 245 – 246
and public health communication campaigns 339;
and research 41; and the role of technology 389; tailored health communication 37 – 38, 345 – 346,
and social media 307; and social support 136 – 137; 371 – 372
and technology-based interventions 375 targeting 37 – 38
social norms 341 – 343, 516 – 517 team communication 246 – 247
social policy makers 347 team theory 245 – 246
social realities 18, 201 telemedicine 41 – 43, 236 – 238, 284, 355, 369,
social relationships 66 511 – 513
social support 136 – 137; future directions for territory 413 – 414
research on supportive communication and health theorizing: communication 38; the knowledge–
142 – 143; health and supportive communication practice gap 39 – 43
in online contexts 140 – 142; supportive theory and theoretical matters 12 – 13, 17 – 24; see also
communication and health 137 – 140; see also specific theories
online support groups theory of planned behavior 66, 296, 309, 374,
social systems 4 – 5, 38, 153, 461 402, 495
social workers 12, 229, 233, 252 theory of reasoned action 341, 374
socioeconomic status 220, 434 – 435 therapists 229, 234
socioemotional communication 250 time series analysis 566
sociopsychological tradition 77 transcendence of narrative 12 – 13
source as originator of communication 89 transdisciplinary health communication approaches
source layering 389 3 – 4, 9 – 13
sourcing 389 translational health communication 33 – 40, 43 – 44
specialty teams 131, 229, 236 translational research 33 – 34, 37, 39, 44
speech communities 37, 441 – 446, 450 translational science 33 – 36
spiritual healers 233 transporting 54
stage models of crises 479 – 480 treatment 367; disparities and technology-based
standardized patients 198 – 199 health communication 375 – 376; effectiveness
stereotyping 80 – 81, 431, 508, 515 of technology-based interventions 369 – 371;
stigma 67 – 70, 77, 85 – 86, 515; coping of 82 – 83; elements of influencing intervention effectiveness
creation of 79 – 81; effects on health and well- 371 – 373; future directions for research and
being 77 – 78; eliminating 83 – 85; future directions practice 376 – 377; an overview of technology-
85; production of and resistance to 81 – 82; and based interventions and important considerations
vocabulary 79 367 – 369; relevant principles of effective health
STIs/HIV 532 – 533 communication 373 – 375
storytellers 12, 47 – 48, 50 – 53, 360 – 361 trust 21 – 22, 219 – 220, 320 – 321, 419 – 420, 588 – 590;
strategic health communication campaigns 336, creating 174; and research 597
339 – 340 truth 190; truth telling about diagnostic
stress: and burnout 264 – 267; emerging job stressors uncertainty 509
within healthcare professions 259 – 262; enduring type 2 diabetes (T2DM) 525 – 526
job stressors within healthcare professions
262 – 264; future research 268 – 269; and supportive uncertainty 221 – 222, 509
communication within the health professions undergraduate medical education (UME) 196
267 – 268 underserved health populations 416
structural equation modeling 566 underutilized methods 27 – 28

610
 Index

U.S. Department of Health and Human Services: visibility 246 – 247

Healthy People 2030 34 violence, depictions of 278 – 279
use patterns of online health 387 vitamins see dietary supplements
user-centered design 43 vocabulary 79, 235, 417, 495, 531
U.S. Federal Trade Commission (FTC) voice tone 216 – 217
290 – 291, 295 volunteers 237
U.S. Food and Drug Administration 294 – 295, 309,
572, 579 weak tie networks 22, 140, 459
web-based delivery 41 – 42, 371, 381 – 382
validity 560 – 562 webinars 39, 337, 468, 552
values: and ethical issues 508 – 518; and family health websites 323 – 324, 343 – 349, 390 – 391, 491 – 492
communication 111 – 112; and imbalances of weight loss 295 – 296
power 526 – 528; improving communication skills weight stigma 220 – 221
203 – 204; and informal caregivers 91 – 97; and well-being 49 – 51; stigma’s effects on 77 – 78
intercultural health communication 450 – 451; wellness: family communication patterns concerning
and mutual persuasion 165 – 167, 170 – 172; and 111 – 112
public health communication campaigns 339 – 340; whistleblowing 511
and stress and burnout 267 – 268; and structural work-life balance 259, 264, 266 – 267, 269
influences 429 – 430
videos 198 youth message development 356

611