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Enhancing Healthcare and
Rehabilitation
The Impact of Qualitative Research

Edited by
Christopher M. Hayre
Dave J. Muller
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Library of Congress Cataloging‑in‑Publication Data

Names: Hayre, Christopher M., editor. | Muller, Dave J., editor.

Title: Enhancing healthcare and rehabilitation : the impact of qualitative
research / [edited by] Dr. Christopher M. Hayre and Professor Dave J.
Muller.
Other titles: Rehabilitation science in practice series. 2469-5513
Description: Boca Raton : Taylor & Francis, 2019 | Series: Rehabilitation
science in practice series | Includes bibliographical references and index.
Identifiers: LCCN 2018059441| ISBN 9780815360810 (hardback : alk. paper) |
ISBN 9781351116824 (ebook)
Subjects: | MESH: Rehabilitation Research | Qualitative Research
Classification: LCC RA440.85 | NLM WB 320.5 | DDC 362.1072/1--dc23
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 Dr. Christopher M. Hayre would firstly like to dedicate this book to his wife

Charlotte Hayre and his daughter Ayva Hayre. Secondly, he would like to

dedicate this book to his late Grandmother, Beryl Irene Curtis. Love to all.

Professor Dave J. Muller would like to dedicate this to his extended family with

love, Pam, Emily, Lucy, Tasha, Harlie, Toby, Edie, Kaya and Freya.
Contents

Preface ..............................................................................................................................................ix
Acknowledgements .......................................................................................................................xi
Editors ........................................................................................................................................... xiii
Contributors ...................................................................................................................................xv

Section I Introductory Perspectives

1. Qualitative Research in Contemporary Healthcare and Rehabilitative Practices .........3

Christopher M. Hayre and Dave J. Muller

2. The Role of Qualitative Research in Adapted Physical Activity ............................... 13

Samuel R. Hodge, Luis Columna, Beth Myers and Denzil A. Streete

Section II Enhancing Healthcare and Rehabilitation:

Contemporary Applications of Qualitative Research
3. Exploring the Value of Qualitative Comparison Groups in Rehabilitation
Research: Lessons from Youth with Disabilities Transitioning into Work ............. 33
Sally Lindsay

4. Unravelling the Irrational – Addressing the Subjective Nature of Sexual

Risk-Taking through Qualitative Research ...................................................................... 53
Simon Bishop

5. The Phenomenological Experience of Family Caregiving following

Traumatic Brain Injury ........................................................................................................65
Charles Edmund Degeneffe

6. Using Interpretative Phenomenological Analysis to Study Patient and Family

Members’ Experiences of a Mechanical Ventilation Weaning Unit .......................... 79
Craig D. Murray, Jo Jury, Victoria Molyneaux, Jane Simpson and David J. Wilde

7. Using Narrative Analysis to Study Coping and Adjusting to Cardiothoracic

Transplant .............................................................................................................................. 93
Craig D. Murray, Catherine Elson, Zoey Malpus and Stephen Weatherhead

8. Qualitative Research and Osteoarthritis of the Knee ................................................ 107

Nicholas F. Taylor, Samantha Bunzli, Jason A. Wallis and Nora Shields

9. Shaping Rehabilitation after Spinal Cord Injury: The Impact of Qualitative

Research................................................................................................................................ 141
Kristin E. Musselman, Hardeep Singh and Janelle Unger
vii
viii Contents

10. Hand Injuries and Disorders during the Life Cycle; Consequences,
Adaptation and Therapeutic Approach.......................................................................... 167
Ingela K. Carlsson, Anette Chemnitz and Lars B. Dahlin

11. Giving People with Aphasia a Voice through Qualitative Research........................ 185
Linda Worrall

12. The Impact of Qualitative Research in Rheumatology............................................... 199

Claudia Oppenauer, Erika Mosor, Valentin Ritschl and Tanja Stamm

13. Challenging Assumptions about ‘Normal’ Development in Children’s

Rehabilitation: The Promise of Critical Qualitative Research.................................. 209
Yani Hamdani and Barbara E. Gibson

14. Bringing Qualitative Research into Rehabilitation – A Worked Example of

Developing a Rehabilitation Program for Patients with Fibromyalgia...................223
Anne Marit Mengshoel and Merja Sallinen

15. Concept Development through Qualitative Research: The Case of Social

Support Networks for People with Intellectual Disability........................................ 243
Anne E. Roll and Barbara J. Bowers

16. The Importance of Social Support in the Rehabilitation of Female Bariatric

Surgery Patients: Lessons Learned from Qualitative Inquiry................................... 253
Jennifer Paff Ogle, Juyeon Park and Mary Lynn Damhorst

17. Qualitative Research on Caregiving Outcomes............................................................ 271

Shilpa Krishnan, Monique R. Pappadis and Timothy A. Reistetter

18. Multiple Sclerosis................................................................................................................ 285

Yvonne C. Learmonth

Section III Methodological Considerations

for Qualitative Researchers
19. Designing Qualitative Research to Have an Impact on Healthcare from the
Outset..................................................................................................................................... 365
Sally Thorne

20. Ethnography and Emotions: New Directions for Critical Reflexivity within
Contemporary Qualitative Health Care Research........................................................ 379
Shane Blackman, Adele Phillips and Rajeeb Sah

Index.............................................................................................................................................. 395
Preface

This book is primarily a celebration of the qualitative work undertaken internationally by

a number of experienced researchers. It also focuses on developing the use of qualitative
research for health and rehabilitative practitioners by recognising its value methodologi-
cally and empirically. We find that the very nature of qualitative research offers an array
of opportunities for researchers in being able to understand the social world around us.
Further, through experience and discussion this book identifies the multifaceted use of
qualitative methods in the healthcare and rehabilitative setting. This book touches on the
role of the researcher, the participants involved, and the research environment. In short, we
see how these three central elements can affect the nature of qualitative work in attempts
to offer originality.
This text speaks to a number of audiences. Students who are writing undergraduate
dissertations and research proposals may find the myriad of examples stimulating and
may support the rationale for methodological decisions in their own work. For academics,
practitioners, and prospective qualitative researchers, this book also aims to demonstrate
an array of opportunism in the field of qualitative research and how they may reason with
arguments proffered.
This book also offers a lens that primarily focuses on the healthcare professionals per-
spective. As a diagnostic radiographer, the first author offers a perspective in how qual-
itative methods can be utilised in what has historically stemmed from positivism, but
importantly recognises the value of quantitative work in his field. Further, the second
author in his role as editor has a privileged insight into the emergence and development of
qualitative research and its application. In short, the editors do not attempt to view qualita-
tive research as superior to quantitative work, but merely accept the value of each.
In the introduction chapter the editors outline some key discussions for both prospec-
tive and experienced researchers. They offer a methodology that resonates with the role of
a healthcare professional in light of treating and managing patients holistically. Section II
offers contemporary applications of how qualitative research has enhanced the evidence
base by utilising qualitative research. Section III offers two methodological chapters that
address both methodological design and the researchers positionality and reflexivity.
It is anticipated that readers will find this collection of qualitative examples not only
useful for informing their own research, but the editors also hope to enlighten new dis-
cussions and arguments regarding both methodological and empirical use of qualitative
work internationally.

Christopher M. Hayre
Dave J. Muller

ix
Acknowledgements

We would like to thank all contributing authors for sharing their innovative qualitative
work. Your commitment to this book reflects the hard work undertaken, and it has been
a pleasure for us to work with you and bring together this collection of sound works.
The work of all authors demonstrates the multifaceted application of qualitative research
in contemporary healthcare and rehabilitation. Further, we are grateful to have received
methodological position chapters that aim to enhance the use of qualitative research for
prospective researchers. Finally, we are in agreement that this has been an exciting and
prosperous project, which we hope readers will enjoy.

xi
Editors

Christopher M. Hayre, PhD, is a senior lecturer in Diagnostic Radiography and Research

Lead for the School of Health Sciences, located at the University of Suffolk, United
Kingdom. After 10 years working clinically as a radiographer he pursued a PhD exploring
the impact of advancing technology and completed this in 2015. He has published an array
of academic work in leading journals pertinent to medical imaging. In 2016, he founded the
Journal of Social Science & Allied Health Professions and is now editor-in-chief. He is currently
involved in a number of scholarly projects involving dementia, virtual reality, everyday
technology, personalised medicine, dose optimisation (X-rays) and artificial intelligence.

Dave J. Muller is currently editor with Professor Marcia Scherer of the CRC series
Rehabilitation Science in Practice. He was founding editor of the Journal Aphasiology and is
currently editor in chief of the Journal Disability and Rehabilitation. He has published more
than 40 refereed papers and has been involved either as series editor, editor or author of
more than 50 books. He is a visiting professor at the University of Suffolk, United Kingdom.

xiii
Contributors

Simon Bishop Lars B. Dahlin

Bangor University Department of Translational Medicine
Bangor, United Kingdom Hand Surgery
Lund University
Shane Blackman and
Cultural Students Department of Hand Surgery
Canterbury Christ Church University Skåne University Hospital
Canterbury, United Kingdom Malmö, Sweden

Barbara J. Bowers Mary Lynn Damhorst

School of Nursing Department of Apparel, Events, and
University of Wisconsin-Madison Hospitality Management
Madison, Wisconsin Iowa State University
Ames, Iowa
Samantha Bunzli
Allied Health Clinical Research Office Charles Edmund Degeneffe
Eastern Health Rehabilitation Counseling Program
Victoria, Australia San Diego State University
San Diego, California
Ingela K. Carlsson
Department of Translational Medicine Catherine Elson
Hand Surgery Department of Clinical Psychology
Skane University Hospital Lancaster University
Malmö, Sweden Lancaster, United Kingdom

Anette Chemnitz Barbara E. Gibson

Department of Hand Surgery Department of Physical Therapy
Skåne University Hospital Bloorview Research Institute
Malmö, Sweden University of Toronto and Senior Scientist
Toronto, Canada
Luis Columna
Department of Kinesiology Christopher M. Hayre
School of Education School of Health Science
University of Wisconsin at Madison University of Suffolk
Madison, Wisconsin Ipswich, United Kingdom

xv
xvi Contributors

Yani Hamdani Anne Marit Mengshoel

Department of Occupational Science and Department of Health Sciences
Occupational Therapy Medical Faculty
University of Toronto Institute of Health and Society
and University of Oslo
Azrieli Adult Neurodevelopmental Centre Oslo, Norway
Centre for Addiction and Mental Health
Toronto, Ontario, Canada Victoria Molyneaux
Department of Clinical Psychology
Samuel R. Hodge Aintree University Hospital
Department of Human Sciences Liverpool, United Kingdom
College of Education and Human Ecology
The Ohio State University
Erika Mosor
Columbus, Ohio
Section for Outcomes Research
Jo Jury Center for Medical Statistics, Informatics,
Department of Clinical Psychology and Intelligent Systems
St Catherine’s Hospital Medical University of Vienna
Wirral, United Kingdom Vienna, Austria

Shilpa Krishnan Dave J. Muller

Division of Physical Therapy Department of Rehabilitation Psychology
Department of Rehabilitation Medicine University of Suffolk
Emory University Suffolk, United Kingdom
Atlanta, Georgia
Craig D. Murray
Yvonne C. Learmonth
Department of Health Psychology
School of Psychology and Exercise Science
Lancaster University
Murdoch University
Lancaster, United Kingdom
Perth, Western Australia, Australia

Sally Lindsay Kristin E. Musselman

Bloorview Research Institute SCI Mobility Lab
Holland Bloorview Kids Rehabilitation Lyndhurst Centre
Hospital Toronto Rehabilitation Institute
and University Health Network
Department of Occupational Science & and
Occupational Therapy Department of Physical Therapy
University of Toronto Faculty of Medicine
Toronto, Ontario, Canada University of Toronto
and
Zoey Malpus Faculty of Medicine
Department of Clinical Psychology Rehabilitation Sciences Institute
Manchester Royal Infirmary University of Toronto
Manchester, United Kingdom Toronto, Ontario, Canada
Contributors xvii

Beth Myers Timothy A. Reistetter

Department of Exercise Science Division of Rehabilitation Sciences
School of Education University of Texas Medical Branch
CAPE, Syracuse University and
Syracuse, New York Department of Occupational Therapy
University of Texas Medical Branch
Galveston, Texas
Jennifer Paff Ogle
Department of Design and Merchandising Valentin Ritschl
Center for Women’s Studies and Gender Occupational Therapist
Research Section for Outcomes Research
Colorado State University Center for Medical Statistics, Informatics,
Fort Collins, Colorado and Intelligent Systems
Medical University of Vienna
Claudia Oppenauer Vienna, Austria
Section for Outcomes Research
Center for Medical Statistics, Informatics, Anne E. Roll
and Intelligent Systems Hochschule für Gesundheit
Medical University of Vienna University of Applied Science (hsg)
Vienna, Austria Bochum, Germany

Juyeon Park Rajeeb Sah

Department of Design and Merchandising Public Health and Health Promotion
Environmental and Occupational Health School of Allied and Public Health
(Physical Activity and Healthy Lifestyle Professions
Concentration) Colorado School of Faculty of Health and Wellbeing
Public Health Canterbury Christ Church University
Colorado State University Canterbury, United Kingdom
Fort Collins, Colorado
Merja Sallinen
Satakunta University of Applied
Monique R. Pappadis Sciences
Division of Rehabilitation Sciences Pori, Finland
University of Texas Medical Branch
Galveston, Texas and
University of Oslo
Adele Phillips Oslo, Norway
Health Promotion and Public Health
School of Allied and Public Health Nora Shields
Professions Department of Physiotherapy
Faculty of Health and Wellbeing College of Science Health and Engineering
Canterbury Christ Church University La Trobe University
Canterbury, United Kingdom Victoria, Australia
xviii Contributors

Jane Simpson Sally Thorne

Lancaster University School of Nursing
Lancaster, United Kingdom University of British Columbia
Vancouver, British Columbia, Canada
Hardeep Singh
SCI Mobility Lab Janelle Unger
Lyndhurst Centre SCI Mobility Lab
Toronto Rehabilitation Institute Lyndhurst Centre
University Health Network Toronto Rehabilitation Institute
and University Health Network
Faculty of Medicine and
Rehabilitation Sciences Institute Faculty of Medicine
University of Toronto Rehabilitation Sciences Institute
Toronto, Ontario, Canada University of Toronto
Toronto, Ontario, Canada
Tanja Stamm
Section for Outcomes Research Jason A. Wallis
Center for Medical Statistics, Informatics, Allied Health Clinical Research Office
and Intelligent Systems Eastern Health
Medical University of Vienna Victoria, Australia
Vienna, Austria
Stephen Weatherhead
Department of Clinical Psychology
Denzil A. Streete
Liverpool University
Graduate School of Arts and Science
Liverpool, United Kingdom
Yale University
New Haven, Connecticut
David J. Wilde
Nottingham Trent University
Nicholas F. Taylor Nottingham, United Kingdom
Department of Allied Health
College of Science Health and Engineering Linda Worrall
La Trobe University School of Health and Rehabilitation
Allied Health Clinical Research Office Sciences
Eastern Health The University of Queensland
Victoria, Australia Brisbane, Queensland, Australia
 Section I

Introductory Perspectives
1
Qualitative Research in Contemporary
Healthcare and Rehabilitative Practices

Christopher M. Hayre and Dave J. Muller

CONTENTS
Introduction .....................................................................................................................................3
The Value of Qualitative Research for Healthcare and Rehabilitation Practitioners ............4
Credibility, Transferability, Dependability, and Confirmability: Reflections in Practice ......7
Summary ........................................................................................................................................ 11
References ...................................................................................................................................... 12

Introduction
This introductory perspective discusses the value of qualitative research in the field of
healthcare and rehabilitation. We begin by opening a discussion regarding qualitative
research, with reflections of our own methodological and empirical experiences. This is
supported with our roles as academic reviewers and editors, supported with our experi-
ences of peer publication. On the one hand, this introductory perspective (and book) is a
celebration of progressive work undertaken by researchers internationally. In addition,
however, this chapter offers an opportunity to discuss the application of qualitative
research, whilst also challenging commonly held perspectives, in order to drive this
central research methodology forward.
We begin by emphasising how qualitative research offers practitioners unique insights
to their clinical environment. This is supported by an innovative methodological strategy
utilised by the first author whereby his ideology and professional practice (Hayre 2015)
remained interconnected in order to uncover original phenomena. This is later deemed a
‘sequentialist philosophy’. Here, we argue that all healthcare professionals utilise inductive
and hypothetical-deductive reasoning in order to provide sound care for their patients
and thus feel it could be an approach that resonates, but more importantly, be of use to
healthcare researchers. These discussions are central because in recent years there have
been many advances in the use and application of qualitative research aligned to post-
modernist thinking, and here, we again aim to expand our utilisation of this important
paradigmatic approach.
Next, we discuss ‘trustworthiness’ within the qualitative framework and how credibility,
transferability, dependability, and confirmability are used to evidence rigor. For example,

3
4 Enhancing Healthcare and Rehabilitation

we provide contemporary strategies of applying these concepts methodologically within

the clinical environment, but importantly reflect on our own experiences to date. In short,
the purpose of this section is to explore contemporary methodological opportunities sup-
porting and enhancing rigor in the clinical environment. This is important in order to
support prospective qualitative researchers in the field.

The Value of Qualitative Research for Healthcare

and Rehabilitation Practitioners
The forthcoming chapters in this book demonstrate the multi-faceted value of qualitative
research within the clinical environment. Further, they demonstrate and challenge how
qualitative approaches play a pivotal role in enhancing the knowledge base for healthcare
and rehabilitative practitioners.
Qualitative research is generally accepted to explore phenomena juxtaposed to quan-
titative techniques, the latter aiming to generalise findings by statistical inference. Here,
we acknowledge the value of utilising qualitative and quantitative approaches in order to
support and/or refute findings, but importantly strengthen the need for qualitative work
clinically. Further, it is important to affirm that we view each paradigmatic approach as
‘complementary’ to the other and affirm that each offers a unique perspective, depending
on the research question(s), whilst seeking to understand the social world around us. We
embrace these approaches because there utility resonates with the delivery of patient care
clinically.
In the field of education, Maxwell (2012) asserts that qualitative research should be seen
as equal to randomised control trials (RCTs). He importantly recognises how qualitative
work offers causational relationships empirically claiming that scientific research in the
field of education ‘assumes that investigations of causation need to be quantitative, requir-
ing randomised control trials (RCTs)’. In short, Maxwell rejects the use of RCTs as the ‘only’
strategy that can infer causality and accepts that qualitative approaches can be used to
make causational relationships, linking these to a number of everyday circumstances. We
agree and promote that qualitative research can have casual outcomes for practitioners,
researchers, and policymakers alike within health and rehabilitative environments, and if
appropriate, can be supported or challenged by other research approaches.
One example of this causational relationship resonates with the first author whereby
equipment error led to the delivery of X-rays to a patient without any net benefit (the
production of a radiograph) (Hayre et al. 2017). Here, causation was identified by means
of participant observation, a generally accepted qualitative approach, thus negating the
need for further quantification and generalisation by use of statistical inference. Here, it
is important to argue that because this observation remained the lived experience of both
the radiographer and the patient (with potential risks associated with X-rays) it should
be seen as equal to RCTs in terms of advancing knowledge and impacting clinical deci-
sions. One example of this is the rationale for ensuring that patients (and staff) are kept
safe whilst receiving medical treatment and/or care. For example, if a patient (or staff
member) is observed to be at risk or in immediate danger, we are morally, ethically, and
legally obliged to intervene in order to prevent undue harm. Thus, by means of observa-
tion we can detect causality which may (or may not, if prevented) lead to poor outcomes.
Qualitative Research in Contemporary Healthcare and Rehabilitative Practices 5

Put simply, we do not observe poor healthcare delivery and decided to run an RCT or sur-
vey to support whether findings are ‘generalisable’. Our point is that qualitative research
should not be seen as inferior in terms of empirical importance because of its inability to
infer outcomes statistically. Observation and communication remain pertinent tools for
healthcare professionals in order to assess clinical and patient outcomes. Here, then, we
also feel that RCTs should offer a qualitative lens in order to inform research directions
and/or to reflect on the patient’s journey of the trial itself in order to provide a holistic
picture of the clinical setting.
The argument that qualitative work can inform quantitative methods is reflected in the
PhD work by the first author. For example, participant observation remained the tool of
choice, primarily observing diagnostic radiographers within the clinical environment.
This generation of theory and new knowledge was then later explored by utilising semi-
structured interviews and undertaking X-ray experiments. Here, Hayre (2015) argued the
need for inductive approaches (by means of participant observation), enabling him to not
only develop an interview schedule, but also hypothetically deduce X-ray experimentation
based on ‘what had been seen’ of diagnostic radiographers. In short, because X-rays cannot
be seen, felt, heard, nor touched, abutting the human senses, the author remained acutely
aware of the importance of quantifying radiation dose in order to learn and understand
the optimisation of X-rays within the clinical environment, but affirm that without the use
of qualitative causality, these experiments would have been based on the author’s own
biases.
In diagnostic radiography, a plethora of quantitative evidence exists documenting
the optimisation of ionising radiation to patients within the clinical environment.
Yet, recent qualitative research by the author identified a ‘disconnect’ between the
evidence base and clinical practice (Hayre 2016), something, which Snaith comments
as ‘practice drift’, whereby historical evidence may not always be adhered (Snaith 2016).
In short, recent developments, and the utility of qualitative enquiries, have critiqued
the theory practice gap in diagnostic radiography by challenging the application of
evidence-based research. Not only does this re-emphasise the value of qualitative
work in order to support/refute quantitative enquiry, it further recognises how as
healthcare professionals we can utilise qualitative methods in order to critically reflect
on quantitative empiricism.
Our argument that qualitative research can inform quantitative enquiries within the
healthcare environment offers an opportunity to discuss its philosophical application
for prospective researchers. Originally, the first author felt juxtaposed in the early stages
of his research following the utilisation of observational and experimental methods.
Initial assumptions led the author to align his research lens to pragmatism, an approach
that evaluates theories or beliefs in terms of their practical evaluation. However, upon
reflection, this was later challenged because the methods utilised alone were not seen as
‘practical’, but more advocated by my own ideological and professional role as a diagnostic
radiographer. For example, whilst a ‘mixed method’ approach was initially seen to be
utilised by means of polarisation of the paradigmatic approaches, this was later rejected
by adopting a sequentialist strategy whereby the methods utilised were required to be
undertaken ‘in order’, reflected by his [Hayre] own professional practices. This is depicted
in Figure 1.1 (Hayre 2015, p. 74).
The rationale for this sequentialist philosophy was grounded by the author’s role as a
diagnostic radiographer. As healthcare practitioners, we observe and interact with our
patients prior to making clinical decisions about the healthcare we deliver. For diagnostic
6 Enhancing Healthcare and Rehabilitation

FIGURE 1.1
Sequentialism philosophy used as part of an overarching ethnographic methodology.

radiographers, this is primarily aligned to selecting an appropriate X-ray exposure and

imaging parameters that will enable sound image quality – the formation of an X-ray
image in order to detect pathology. By observing and communicating with a patient, this
reflects on the use of inductive reasoning by radiographers in order to hypothetically
deduce an appropriate X-ray exposure based on the type of examination, pathology, and
size of the patient. This ‘sequential’ approach of delivering care within the X-ray room
is not typically seen as polar opposites, but rather as ‘holistic’ when delivering optimum
patient care.
On reflection, then, the utilisation of both inductive and hypothetical-deductive
reasoning remains part of all healthcare professionals day-to-day practices whereby
observation, communication, and treatment/management remain at the centre of an
individual’s care. In response, we offer ‘sequentialism’ as a methodological strategy
that reflects the role of health and rehabilitative practitioners clinical work in order to
enhance a body of knowledge. Further, this utilitarian philosophy offers healthcare
professionals a methodological approach that critically reflects on our day-to-day prac-
tices whereby research tools are incorporated into what Hayre (2015) termed in his
work ‘an ethnographic sphere’. This strategy was later termed ‘an umbrella approach’
which encompassed an array of methods in order to answer the healthcare profession-
als research question(s). This strategy was supported by Holliday (2016) in a recent
monograph:

My personal conclusion to this [Hayre’s] discussion is that there does need to be an

‘umbrella’ strategy of investigation or methodology within any research project that
drives whatever methods of data collection and analysis are used whether they are
quantitative or qualitative. This means that within a post modern paradigm the
Qualitative Research in Contemporary Healthcare and Rehabilitative Practices 7

understanding that both the social phenomena being investigated and the methodol-
ogy for investigating them are socially and ideologically constructed will apply also to
quantitative methods.

Accepting this approach implies a post-modern sequentialist philosophy that is not mixed
methods, but complementary, and one that is used to better understand the social world
of health and rehabilitative environments. This leads to affirm that the value of qualitative
research can not only inform quantitative approaches within the healthcare environment,
but also be seen as a ‘sequentialist methodology’. In short, whilst this sequentialist strat-
egy remained central to the author’s ethnographic work, we argue that this philosophical
lens can be utilised in other methodological contexts in order for researchers to reflect and
engage in original phenomena around them.

Credibility, Transferability, Dependability,

and Confirmability: Reflections in Practice
Ensuring methodological rigor in qualitative research remains paramount. It is important
to note that whilst we accept the importance of rigor, which we will now term ‘trustwor-
thiness’ hereafter, we do not offer a prescriptive model. This is important to recognise, as
different researchers will have different experiences with participants within their unique
research environment(s). We do, however, accept the four generally accepted terms, cred-
ibility, transferability, dependability, and confirmability and feel that these remain central
to ensuring that qualitative research remains ‘trustworthy’ in healthcare and rehabilitative
environments.
We begin by highlighting the importance of the methodological approach in all qualita-
tive research. We affirm that a methodological approach adopted by a researcher should
be informed by the research question(s) and existing gaps within the evidence base. As
academics, we agree that a research methodology is analogous to a ‘car engine’, enabling
a researcher to reach their destination [by answering the initial research question(s)]. This
analogy is also relevant when discussing data saturation and accepting when researchers
should ‘leave the field’. One way of limiting this is by critically evaluating one’s own biog-
raphy. To date, we have seen the value of researchers providing critical auto/biographical
contextualisation of ‘self’ in order to critically examine the context of the researcher and
his/her participants (West 2014). In short, we feel that researchers should offer auto/
biographical accounts in order to help situate the researcher within the context of his/her
research. This will enable outsiders to gain a perspective from the researcher’s standpoint,
a rationale for exploring the topic of interest and outline any inherent biases.
It is generally accepted that researchers need to outline how they have ensured their
research remains ‘trustworthy’ by describing how credibility, transferability, dependabil-
ity, and confirmability have been met. Whilst these are generally accepted, we feel that
the representation of these four terms in peer-reviewed journals can often be omitted,
and as academic reviewers we also appreciate that reviewers may differ in their opin-
ion on the level of detail required in order to ensure the study remains ‘trustworthy’.
The first author has direct experience of the level of detail required by academic review-
ers whereby his own publications have no discussion (Hayre 2016), little discussion
8 Enhancing Healthcare and Rehabilitation

(Hayre et al. 2018), or detailed discussion (Hayre et al. In Press) of these four terms. Again,
whilst we do not propose a linear model, on reflection, we feel that authors and reviewers
should offer sufficient detail that reflects the researchers approach to ensuring rigor in
their qualitative work.
In the classic work of Lincoln and Guba (1985, p. 290), they explain the basic question of
ensuring qualitative rigor:

How can an inquirer persuade his or her audiences (including self) that the findings or
an inquiry are worth paying attention to, worth taking account of?

This statement illustrates the importance of being able to ensure that researchers offer
descriptive accounts that will resonate with peers of that professional community. We will
now discuss the four generally accepted terms, whilst importantly reflecting on our own
research experiences.
Credibility ensures whether a reader can ‘trust’ the work of the researcher. For example, it
refers to researchers ability to check the truth of the data of his/her participants, commonly
termed ‘member checking’. Lincoln and Guba (1985) assert this to be of primary importance
for assessing trustworthiness whereby a researcher follows up with participants to verify
that the findings reflect the intended meaning(s). In our view, member checking remains an
important tool for qualitative researchers whereby participants can verify interview/focus
group transcripts and observational data. In addition to participant verification, Holliday
(2016) recommends that qualitative researchers enhance the credibility of their work by
engaging in ongoing discussions with peers during and post-data analysis. This offers an
alternate form of triangulation whereby the findings are continually discussed with col-
leagues, enabling the researcher to continuously reflect on the empirical findings. We agree
and utilise both member checking and peer-debriefing in our work, whereby discussions
held with PhD supervisors, colleagues (healthcare practitioners/academics), and students
(in seminar led discussions) enhanced the credibility of the qualitative work. In short, we
agree that credibility moves beyond member checking and into the researchers community.
Another facet enhancing credibility is prolonged engagement with participants in the
field. In the author’s ethnographic work, prolonged engagement remained paramount,
enabling the researcher to become familiar with both the environment and his partici-
pants. Whilst prolonged engagement may arise from a ‘researcher position’, we argue that
there may be other elements that enhance prolonged engagement. For example, the author
reflects on his clinical experiences as a radiographer and interactions with peers. On reflec-
tion, the author already knew some of the participants prior to becoming ‘the researcher’
and thus influencing the research context. These historical experiences provided greater
understanding of the clinical environment. Here, however, the balance of remaining
objective was often problematic with some participants, but through critical reflection, the
researcher was often required to balance ‘friendship’ with ‘becoming a stranger’ in order
to provide a balanced and honest approach.
Transferability within the qualitative context is seen as a tool that enables other health-
care practitioners to be able to resonate with the empirical work presented. More specifi-
cally, Lincoln and Guba (1985, p. 290) assert that transferability ‘determines the extent to
which the findings of a particular inquiry have applicability in other contexts or with
other subjects/participants’ and is equivalent to external validity in quantitative research.
Transferability can be achieved if researchers provide thorough description(s) of the
research context in order for readers to judge and transfer the findings into their clinical
environments. We feel this is achieved when researchers offer comprehensive description
Qualitative Research in Contemporary Healthcare and Rehabilitative Practices 9

of the informants partaking in the research, supported with contextual information about
the environment. This, then, enables a reader to judge the extent to which the findings
resonate with the lived experience. This is important because whilst it has been argued
that qualitative findings cannot be generalised, we argue that qualitative work can be gen-
eralised, as it remains the lived [potential] reality of others. We affirm that generalisation
of qualitative work can be achieved (as discussed above), but not by conventional numer-
ism. In short, whilst qualitative work is not typically quantified, it does not mean that it
fails to be generalised by healthcare professionals either nationally and/or internationally
and inform their clinical decisions.
Attempts of enhancing the transferability can also be supported by undertaking multi-sited
research. In the field of diagnostic radiography techniques vary amongst practitioners, which
is dependent on both protocols and workplace cultures. In the author’s (Hayre 2015) work, he
undertook research at multiple sites in order to provide a holistic perspective of behaviours
and actions of practitioners. In this multi-sited ethnographic work, the author aimed to ‘build
a more transferable picture’ of the clinical setting to his readers. Thus, whilst we feel that the
lived experience of an individual can be generalised, the practice of multi-sited work can also
help convince readers of an overarching perspective to the research questions posed.
Transferability can also be enhanced in light of socio-technological advances. For exam-
ple, social media adds an alternate lens to understanding the transferability of empiri-
cism by means of digital dialogue internationally. The evolution of social media, supported
with metric data adds and alternate lens by supporting the ‘transferable nature’ of quali-
tative work via ‘online discussions’. In short, social media offers ‘digital conversations’
of research from healthcare practitioners around the world. For example, some of the
authors’ own work has been discussed by peers from the United Kingdom, Australia, and
New Zealand in the form of ‘tweets’ on the social media platform ‘Twitter’. The following
tweets are readily available in the public domain and are presented verbatim below:

Radiographers: Want to find out if general practices adhere to person-centred care?

*MIT’s* Good insight into patient-centred care in x-ray dept’s. DR = ↓ time with pt’s = ↓
in care?? I can see how it happens!

Gr8 point. ↓ in time should = ↑ time for care. Our 2 min with patient is 2 min more than
reporting radiologist.

This demonstrates the extent in which individuals find qualitative research impactful in
their clinical environment via a digital platform. As technology continues to impact on
how we interact with others, this will arguably impact on our ‘measures’ of assessing
the transferability of empirical work. To surmise, we feel that the use of social media can
be used as a tool to ascertain and enhance transferable attributes of qualitative work in
order to provide a holistic view of supporting the trustworthiness of qualitative findings
internationally.
Dependability is generally achieved when the research questions are clearly connected
to the research methodology. In our discussions above, we have already asserted that
the initial research questions should drive the methodology and that researchers should
avoid being ‘methodologically led’. Whilst this demonstrates linearity in terms of basing
a methodological approach on existing literature and original research questions, we also
suggest that researchers remain reflexive as a study progresses. For example, in author’s
own experiences, the use of inductive reasoning enabled him [Hayre] to ‘explore the
10 Enhancing Healthcare and Rehabilitation

unknown’ within the clinical setting. This is important to recognise in the research envi-
ronment because as a researcher progresses through data collection, analysis, and write
up, inherent discussions and thought processes naturally impact on the interpretation by
the researcher. In response, then, for research question(s) to remain ‘rigid’, this may sug-
gest a lack of critical reflexivity pre and post-data analysis. In short, we accept that whilst
the research questions should initially inform data collection methods, researchers may
find themselves ‘moving back and forth’ (as depicted in Figure 1.1), whereby they remain
impacted by data analysis, empirical outcomes, ongoing discussions with peers, and dur-
ing the ‘write up’ phase. In the authors’ experience, these have all led to amendments to
the initial research questions, and whilst this does not propose that qualitative work is in
danger of losing its ‘scientific finesse’, it merely accepts that a researchers’ positionality
and reflexive journey may impact on pre-emptive conjectures, which may then need to be
refined.
One approach of ensuring dependability is maintained by the representation of an audit
trail. Because qualitative researchers interpret the social around him/her impacting on
any final assertions made, critical reflective accounts need to be traceable by the reader(s).
For example, the researcher’s ‘position’ and ‘presence’ in the clinical environment will
impact on relations with his/her participants (Hayre et al. 2017). In the author’s work,
Hayre (2015) reflects on the impact of being asked to wear a white doctors coat in the
X-ray room, leading participants to challenge his attire. In addition, the author reflects on
how the layout of multiple medical imaging environment(s) both facilitated and hindered
data collection in his PhD work. For example, on the one hand, some environments were
conducive whereby the researcher had ‘space’ to record interactions and communicate
effectively with participants. On the other hand, the author reports of a single occasion
where he was asked to leave the clinical environment because he was ‘in the way’. These
open and honest reflections detail the researchers journey within the research environ-
ment whereby repetition by others elicit similar responses. Marcus (1998, p. 98) reminds us
that when conducting multi-sited research, researchers may become ‘the research activist’,
renegotiating identities in different situations. In short, we recognise the importance of
reflecting on experiences that both hinder and facilitate the research process in order to
create a sound audit trail for prospective researchers.
Lastly, confirmability refers to the adequacy of information reported from the research
question(s). It is generally accepted that different researchers might produce different
constructions with the same data (Glaser and Strauss 1967), yet it should be possible to
trace constructions and assertions to their original sources and make them available to
outside reviewers of the study (Lincoln and Guba 1985). Further, the data should represent
the participant’s responses and not the researcher’s biases or viewpoint. In the authors’
view, the participants can achieve this by offering dichotomous verbatim quotes of partic-
ular phenomena. This will prevent any underlying assertions of researcher bias whereby
a balanced analysis and discussion has taken place.
In addition, we claim that qualitative researchers have a responsibility of critically evalu-
ating their role in the field. We recommend that researchers utilise a reflexive lens in order
to continually assess their relationships with participants (and patients) with the intended
research outcomes. One way of being ‘ethically mindful’ is identifying when a researcher
should ‘leave the field’. There have been numerous papers highlighting ‘when to stop’
and ‘whether one more interview is enough’ when qualitative researchers may find them-
selves discussing sensitive topics and uncovering rich data (National Centre for Research
Methods 2013). Our analogy is, again, reflected in the role of the diagnostic radiographer
Qualitative Research in Contemporary Healthcare and Rehabilitative Practices 11

(and other healthcare professionals) whereby he/she has a duty of care in the X-ray envi-
ronment to take as fewer radiographs as possible to answer ‘the clinical question(s)’. This is
analogous to having a moral duty as qualitative researchers whereby researchers remain
mindful of obtaining data saturation in order to recognise if/when the researcher should
leave the field. Discussions concerning ‘leaving the field’ by researchers are important, but
rarely discussed in accepted manuscripts. This is important because a central element of
all qualitative research is the people who are involved and thus should be reflected upon
(Hayre 2016). Further, where a number of gatekeepers have played central roles in allowing
a researcher to observe and/or access their everyday lives is also another importance facet
to consider. Looking back, upon leaving the field, special thanks were made to all staff.
This was coincided with the feeling of ‘sadness’, whereby friendships had been established
in professional and social contexts. Further, we remind readers that leaving the field is not
too dissimilar from discharging and/or transferring a patient in the hospital setting. For
example, as a diagnostic radiographer, we ensure that patients are aware of the next steps,
signposted to key information, and offer opportunities for patients to reflect on experi-
ences of receiving care via a short questionnaire. In brief, qualitative researchers should
remain mindful of leaving the field, and ensure that it is reflected as part of the method-
ological process, as this will help convince readers of sound ethical conduct by completing
the audit trail of the research process.
It remains generally accepted that qualitative researchers should abide to these prin-
ciples in order to enhance the trustworthiness of qualitative research. Here, we have not
only offered approaches, but provided insight into how this can be achieved in the clinical
environment. We accept that all qualitative researchers will encounter unique challenges,
and the examples outlined here may not resonate with peers. It does, however, aim to
extend our understanding of ensuring trustworthiness in qualitative research within the
healthcare and rehabilitation environment, which can be utilised by researchers.

Summary
Here, we have discussed the value of qualitative work within the health and rehabilita-
tive environment. First, we outlined the growing acceptance of qualitative work and how
it remains central to understanding the lived reality of key participants. We have fur-
ther championed the importance of qualitative approaches by offering a methodological
approach that may be utilised by prospective researchers in healthcare and rehabilitation.
Healthcare professionals are reminded of our need to understand both social and scien-
tific phenomena, whereby qualitative and quantitative approaches are typically used. In
response to this, we argue that ‘sequentialisim’ can be used to strategically complement
our ontology and epistemology. In short, whilst the authors have published quantitative
and qualitative work, we do not see ourselves as ‘mixed method researchers’, but as a
healthcare professional and psychologist utilising techniques to holistically inform and
enhance patient outcomes.
Next, we discussed the importance of ensuring the trustworthiness of research findings.
The generally accepted terms credibility, transferability, dependability, and confirmability
are outlined with examples linking to the author’s experiences. We discuss contempo-
rary approaches to achieving trustworthiness in an attempt to aid prospective qualitative
12 Enhancing Healthcare and Rehabilitation

researchers. Further, we offer original discussions of maintaining trustworthiness within

the clinical environment with discussions pertinent to the healthcare and/or rehabilitative
environment.
The forthcoming chapters not only demonstrate the versatility of qualitative approaches
in the health and rehabilitative settings, but also celebrate the novel and ambitious
approaches utilised by researchers in the contemporary setting.

References
Glaser, B. and Strauss, A. (1967) The Discovery of Grounded Theory: Strategies for Qualitative Research.
New York: Aldine De Gruyter.
Hayre, C.M. (2015) Radiography Observed: An Ethnographic Study Exploring Contemporary Radiographic
Practice. PhD Thesis, Canterbury Christ Church University.
Hayre, C.M. (2016) ‘Cranking up, whacking up and bumping up: X-ray exposures in contemporary
radiographic practices’. Radiography 22 (2), pp. 194–198.
Hayre, C.M., Blackman, S., Carlton, K., and Eyden, A. (2018) ‘Attitudes and perceptions of radiog-
raphers applying lead (Pb) protection in general radiography: An ethnographic study’.
Radiography 24 (1), pp. e13–e18.
Hayre, C.M., Blackman, S., Carlton, K., and Eyden, A. (In Press) ‘The use of digital side markers and
cropping in digital radiography’. Journal of Medical Imaging and Radiation Sciences, doi:10.1016/j.
jmir.2018.11.001.
Hayre, C.M., Eyden, A., Blackman, S., and Carlton, K. (2017) ‘Image acquisition in general radiogra-
phy: The utilisation of DDR’. Radiography 23 (2), pp. 147–152.
Holliday, A. (2016) Doing and Writing Qualitative Research. Los Angeles, CA: Sage.
Lincoln, Y. and Guba, E. (1985) Naturalistic Inquiry. London, UK: Sage.
Marcus, G.E. (1998) Ethnography through Thick and Thin. Princeton, NJ: Princeton University Press.
Maxwell, J.A. (2012) ‘The importance of qualitative research for causal explanation in education’.
Qualitative Enquiry 18 (8), pp. 655–661.
National Centre for Research Methods Review Paper (NCRM). (2013) How Many Qualitative Interviews
Is Enough? [Online] Available at: http://eprints.ncrm.ac.uk/2273/ (Accessed 30 October 2018).
Snaith, B. (2016) ‘Evidence based radiography: Is it happening or are we experiencing practice creep
and practice drift’. Radiography 22 (4), pp. 267–268.
West, L. (2014) ‘Transformative learning and the form that transforms’. Journal of Transformative
Education 12 (2), pp. 164–179.
2
The Role of Qualitative Research
in Adapted Physical Activity

Samuel R. Hodge, Luis Columna, Beth Myers and Denzil A. Streete

CONTENTS
Introduction ................................................................................................................................... 13
Origins of Adapted Physical Activity ........................................................................................ 14
According to the By-laws of the IFAPA ..................................................................................... 14
Qualitative Research in Adapted Physical Activity ................................................................. 15
Qualitative Research Methodologies and Quality Indicators ................................................ 15
Learning about and Individuals with Disabilities through Qualitative Research .............. 21
Exemplars of Scholarly Rigor in Qualitative Research ............................................................ 23
Computer Aided Qualitative Data Analysis Software ............................................................ 24
Transforming Qualitative Research into Practice ..................................................................... 25
Using Qualitative Methodologies to Inform Future Program Directions............................. 26
Qualitative Research and Its Role in the Future of Adapted Physical Activity ................... 27
Summary and Conclusions.......................................................................................................... 27
References ...................................................................................................................................... 28

Introduction
From early traditional research methodologies to current expanded conceptualisations
of scientific research in education, conducting research in adapted physical activity set-
tings has been, at times, a complex endeavour. These complexities necessitate the iden-
tification of qualitative research methodologies and quality indicators that represent
rigorous application of methodology to questions of interest in adapted physical activity
research.
In this chapter, we discuss the role of qualitative research in adapted physical activity
and how qualitative research enhances our learning about and involving individuals
with disabilities and their caregivers. Further, we identify and discuss quality indicators
(criteria) for qualitative research that represent rigorous application of methodology to
questions of interest in adapted physical activity research. Moreover, we discuss trans-
forming qualitative research into practice and its impact on stakeholders (e.g., families,
educators). Lastly, we articulate how qualitative research might enhance the future of
our profession.

13
14 Enhancing Healthcare and Rehabilitation

Origins of Adapted Physical Activity

In the United States, physical education is defined within special education under the
Individuals with Disabilities Education Improvement Act. Specifically, Public Law 108-446,
Individuals with Disabilities Education Improvement Act (2004) defines special education
as ‘specially designed instruction, at no cost to parents, to meet the unique needs of a
child with a disability, including (a) instruction conducted in the classroom, in the home,
in hospitals and institutions, and in other settings; and (b) instruction in physical educa-
tion’ (p. 118). This is important because it means in essence that all students being served
in special education must receive physical education instruction with one exception. The
exception under the Individuals with Disabilities Education Improvement Act is that public
schools ‘must make physical education available to children and youth with disabilities
unless the school does not offer it to students without disabilities in the same grades’ (U.S.
Government Accountability Office, 2010, p. 8). Adapted physical education specialists and
physical education generalists are among those who work with individuals with special
needs in schools.
In 1973, leaders from Canada and Belgium more broadly conceptualised the scope of
adapted physical education to adapted physical activity and founded the International
Federation of Adapted Physical Activity (IFAPA, 2009) in Quebec, Canada.
IFAPA is an international cross-disciplinary professional organisation of individuals,
institutions, and agencies supporting, promoting, and disseminating knowledge and
information about adapted physical activity, disability sport, and all aspects of sport,
movement, and exercise science for the benefit of persons who require adaptations to
enable their participation (IFAPA n.d.).

According to the By-laws of the IFAPA

Adapted physical activity is a cross-disciplinary body of knowledge directed towards the
identification and solution of individual differences in physical activity. It is a service-
delivery profession and academic field of study that supports an attitude of acceptance of
individual differences, advocates access to active lifestyles and sport, and promotes inno-
vation and cooperative service delivery programs and empowerment systems. Adapted
physical activity includes, but is not limited to, physical education, sport, recreation, dance
and creative arts, nutrition, medicine, and rehabilitation (IFAPA n.d.).
IFAPA’s former presidents Hutzler and Sherrill (2007) explained that in some countries
adapted physical activity is not the preferred verbiage, instead such terms as sports for
the disabled, sport therapy, and psychomotor therapy are similar in meaning. Hutzler and
Sherrill (2007) called for more communication and collaboration internationally across
these areas in research and information sharing. Scholarly journals are an important
medium for communication, research collaboration, and information sharing. In 1984,
founded by Geoffrey D. Broadhead, the Adapted Physical Activity Quarterly (APAQ) was
first published. APAQ is now considered the primary international academic journal that
The Role of Qualitative Research in Adapted Physical Activity 15

focuses specifically on adapted physical activity research and is considered a main source
of published research in the field (Haegele, Lee, & Porretta, 2015). It is the official publica-
tion of IFAPA and is published by Human Kinetics.

Qualitative Research in Adapted Physical Activity

In examining the efficacy of adapted physical activity, particularly for school-aged chil-
dren, much of what is involved is the question of impact. While other research methodolo-
gies specifically treat with cause and effect, qualitative research offers the field an approach
which is descriptive and examines the processes involved (Odom et al., 2005). Brantlinger,
Jimenez, Klingner, Pugach, and Richardson (2005) in highlighting the value of qualita-
tive studies to special education defined qualitative research as ‘a systematic approach
to understanding qualities, or the essential nature, of a phenomenon within a particular
context’ (p. 195).
Qualitative research, with no disciplinary allegiance, has made valuable contributions to
adapted physical activity and is believed to have been introduced to the field in Maureen
Connolly’s 1994 article in APAQ ‘Practicum Experiences and Journal Writing in Adapted
Physical Education: Implications for Teacher Education’ (Zitomer & Goodwin, 2014). As in
Connolly (1994), qualitative research seeks to understand ‘insiders’ experiences’ (p. 307),
and in an interactive field such as adapted physical activity, understanding that knowl-
edge is co-constructed, with facilitators and participants both worthy of having their con-
tributions acknowledged and worthy of study is to be valued. As opposed to quantitative
research, qualitative research differs in the following ways: ‘(1) the distinction between
explanation and understanding as the purpose of inquiry; (2) the distinction between
a personal and impersonal role for the researcher; and (3) a distinction between knowl-
edge discovered and knowledge constructed’ (Stake, 1995, p. 37).

Qualitative Research Methodologies and Quality Indicators

In 2014, Zitomer and Goodwin reviewed and synthesised criteria for evaluating the quality
of qualitative research, particularly in adapted physical activity as well as identified strat-
egies towards their achievement. In their words, Zitomer and Goodwin (2014) sought to
articulate ‘a flexible and parsimonious framework that may facilitate researchers, readers,
and reviewers of qualitative inquiry to constructively evaluate research quality’ (p. 193).
They identified six criteria that may be applicable to evaluating the quality of qualita-
tive research conducted in adapted physical activity. The six criteria are: (a) reflexivity,
(b) credibility, (c) resonance, (d) ethics, (e) contribution, and (f) coherence.
Table 2.1 presents the six criteria and common terms that coincide with these crite-
ria based on Zitomer and Goodwin’s review of published qualitative studies. Further,
the quality criteria and accompanying strategies for qualitative research are pre-
sented in Table 2.2. Noteworthy, the editorial board of the APAQ recommended that
 16

TABLE 2.1
Quality Criteria and Coinciding Terms from Published Qualitative Studies
Reflexivity Credibility Resonance Ethics Contribution Coherence

Audibility Adequacy Aesthetic Caring Actualisation Achieve purpose

Aesthetic merit
Balance Authenticity A story that moves Dialogic Advocacy Adequacy
Criticality Commitment Clarity Engagement Community Clarity
Engagement Concreteness Craftsmanship Empathetic Construction of further Coherence
Questions
Explicitness Contextual sensitivity Creativity Empowered Contribution: Congruence
Honesty Credibility Divergent Reactions Ethical Self-Consciousness Heuristic, Delimitation
Methodological,
Practical, Theoretical
Impact Critical interpretation Fittingness Ethics: Procedural Impact Integration
Openness Data sufficiency Formulation Ethics: Situational Importance Internal consistency
Positionality Dependability Generalisation Ethics: Relational Originality Interpretation
Positioning Explication Naturalistic Ethics: Exiting Outcome Meaningful coherence
Process Express a reality Presentation Reciprocity Persuasive Transparency
Researcher Plausibility Relevance Sacredness Rational Understandability
Presuppositions
Self/Social Critique Reliability Resonates Sensitivity Relevance
Sincerity Trustworthiness Responsiveness Scope and Purpose
Subjectivity Validity Social Context Social Validity
Transparency Verification Transferability Substantive
Contribution
Vulnerability Verisimilitude Typicality Usefulness
Voice Vividness Value
Writing Worth/Worthy Topic

Source: Zitomer, M.R., and Goodwin, D., Adapt. Phys. Activ. Q., 31, 193–218, 2014.
Enhancing Healthcare and Rehabilitation
TABLE 2.2
Quality Criteria and Accompanying Strategies for Qualitative Research
Reflexivity Credibility Resonance Ethics Contribution Coherence
Articulate theoretical Abundant detail Aesthetic Collaboration Future research Appropriate research
position suggested aims
Audit trail Adequate data Attention to context Confidentiality Implications for Coherence across
practice aim, purpose,
Bracketing Analysis described Evocative Data safeguarded Influences multiple question, sampling
audiences method, and data
collection
Disclose researcher Code checking Presentation Ethics approval Moves reader to action Methodological
bias congruence
Reflexivity Complex narratives Sample situated Informed consent New methodological
approach
Self-reflective External audits Thick description Legend of cautions Question and
journaling Grounded in Multivocality interpretation
examples grounded in current
research
Transparency Member checks Participant welfare
The Role of Qualitative Research in Adapted Physical Activity

Negative cases Promises to Theory applied in new

participants kept context
Peer debriefing Reflexivity
Prolonged Researcher and
engagement participant hierarchy
Reciprocity challenged
Sampling
Triangulation

Source: Zitomer, M.R., and Goodwin, D., Adapt. Phys. Activ. Q., 31, 193–218, 2014.
17
18 Enhancing Healthcare and Rehabilitation

APAQ contributing authors should consider these criteria in their qualitative research.
Specifically, a new set of instructions to APAQ’s contributing authors includes the criteria
that Zitomer and Goodwin (2014) articulated along with brief explanations (Table 2.3).
Further, APAQ’s editorial board explains,

TABLE 2.3
APAQ Recommendations for Authors of Qualitative Research
Quality Indicator Considerations

Reflexivity is the means by which researcher • Identify your background as a researcher/

background and theoretical assumptions impacting practitioner in the field.
study process and findings becomes apparent. The • Identify your personal bias that may impact the
extent to which reflexivity would be evident in research process and findings and how it was
qualitative papers depends on the paradigmatic addressed (distancing one-self or incorporate it
approach with which you align. into your study).
Credibility encompasses the extent to which findings • Clearly identify the strategies you used
represent experiences shared by participants or throughout your data collection process in order
observed by researcher. to demonstrate the credibility of your work.
• Explain how your chosen strategies align with
your paradigmatic perspective.
Resonance is the impact a study has on readers and • Writing style. Is the writing aesthetic and
its ability to meaningfully reverberate with them. evocative in a way that can make readers feel like
Depending on the paradigmatic approach with they are present in the context with the
which you align, resonance can be achieved by the researcher?
adjacent considerations. • Transferability. Are context and findings
described in depth allowing readers to consider
other situations to which they may be relevant?
Contribution addresses ways in which research • Do the introduction and review of literature
contributes to deeper understanding, clarifying clearly demonstrate the need for the study?
confusion, extending knowledge, and generating • How do the study findings contribute to
insights. professional practice in the field?
• How do the study findings contribute to
enhancing theoretical knowledge and thought in
the field?
• How do study findings enhance other research
findings in the field?
• Is future research suggested based on the study
findings?
Ethics addresses the importance of carrying out • Was ethical approval obtained from a university
research in a respectful, humane, honest, and ethics review board or other form of ethics
empathic way. Ethical considerations are imperative review board?
in all stages of a research process, but may differ in • What was the nature of the relationship between
their relevance and interpretation based on the researcher and participants during the research
paradigmatic approach. process?
• How did your relationship with participants
impact your findings?
• What procedures did you follow for leaving the
field and sharing your findings?
Coherence. A coherent study follows a consistent, • Is there a clear line of thought from the
clear, and concise epistemological perspective from introduction throughout to the conclusions?
its introduction through to its conclusions. • Do your methods align with your methodology
and stated paradigmatic approach?
• Do the strategies you chose align with your
stated research purpose?
• Did your study achieve its stated purpose?
The Role of Qualitative Research in Adapted Physical Activity 19

It is important to note that not all the above mentioned six criteria would necessarily be
equally important or evident in all qualitative studies. Therefore, we recommend the following:

• Be aware of and indicate the paradigm under which you are working.
• Indicate the criteria of importance to your work based on your paradigmatic per-
spective and criteria that can be broken without impacting the quality of your work.
• Demonstrate evidence that your criteria of importance were achieved.
• Demonstrate evidence that your chosen criteria and strategies are consistent with
the overall intent and value of your study. Moreover, APAQ’s guidelines for judg-
ing studies in conducting literature reviews asks several questions for contribut-
ing authors’ consideration (APAQ, 2015).
• How did you assess methodological quality?
• Did you use guidelines or a rubric for systemic review?
• Did you have quality summary scores to distinguish between high- and low-
quality studies?
• Did you exclude studies of low methodological quality?

Zitomer and Goodwin’s suggestions for qualitative studies are quite useful for those con-
ducting literature reviews, examining the extant literature in preparing theses and dis-
sertations, as well as useful for both emerging and advanced scholars conducting adapted
physical activity research. In addition to those articulated by Zitomer and Goodwin,
researchers should consider such quality indicators as those articulated by Brantlinger et al.
(2005) for example, which are relevant to common data collection and analysis methods in
qualitative studies (Table 2.4).

TABLE 2.4
Quality Indicators for Qualitative Research
Interview Studies (or Interview Components of Comprehensive Studies)
• Appropriate participants are selected (purposefully identified, effectively recruited, adequate number,
representative of population of interest).
• Interview questions are reasonable (clearly worded, not leading, appropriate, and sufficient for exploring
domains of interest).
• Adequate mechanisms are used to record and transcribe interviews.
• Participants are represented sensitively and fairly in the report.
• Sound measures are used to ensure confidentiality.

Observation Studied (or Observation Components of Comprehensive Studies)

• Appropriate setting(s) and/or people are selected for observation.
• Sufficient time is spent in the field (number and duration of observations, study time span).
• Researcher fits into the site (accepted, respected, unobtrusive).
• Research has minimal impact on setting (except for action research, which is purposely designed to have an
impact).
• Field notes systematically collected (videotaped, audiotaped, written during or soon after observations).
• Sound measures are used to ensure confidentiality of participants and settings.

Document Analysis
• Meaningful documents (texts, artefacts, objects, pictures) are found and their relevance is established.
• Documents are obtained and stored in a careful manner.
• Documents are sufficiently described and cited.
• Sound measures are used to ensure confidentiality of private documents.
(Continued)
20 Enhancing Healthcare and Rehabilitation

TABLE 2.4 (Continued)

Quality Indicators for Qualitative Research
Data Analysis
• Results are sorted and coded in a systematic and meaningful way.
• Sufficient rationale is provided for what was (or was not) included in the report.
• Documentation of methods used to establish trustworthiness and credibility are clear.
• Reflection about researchers’ personal position/perspectives are provided.
• Conclusions are substantiated by sufficient quotations from participants, field notes of observations, and
evidence of documentation inspection.
• Connections are made with related research.
Source: Brantlinger, E. et al., Exceptional Children, 71, 202, 2005.

TABLE 2.5
Comparison of Criteria for Judging Quality in Quantitative and Qualitative Research
Quantitative Qualitative Description Strategies
Objectivity or neutrality Confirmability The extent to which the Audit trail of the process
findings are the product of data analysis
of the inquiry and not the
bias of the researcher
Triangulation
Member checking
Reflexive research journal
Reliability Dependability The extent to which the Audit trail of procedures
(consistency, study could be repeated and processes
auditability) and variations understood
Triangulation
Reflexive research journal
Internal validity Credibility (truth value) The degree to which the Prolonged engagement
findings can be trusted or Persistent observation
believed by the
participants of the study
Referential adequacy
materials
Peer debriefing
Member checking
Triangulation
Negative case analysis
Reflexive research journal
External validity Transferability The extent to which the Thick description
(applicability, findings can be applied in Purposive sampling
fittingness) other contexts or with
other participants
Reflexive research journal

Source: Petty, N.J. et al., Man. Ther., 17, 382, 2012.

Petty, Thomson, and Stew (2012) compared criteria for judging quality (or rigor) in quan-
titative research and qualitative research with accompanying strategies (Table 2.5). In gen-
eral, quantitative researchers rely on research questions and hypothesis testing, design
The Role of Qualitative Research in Adapted Physical Activity 21

controls, and statistical manipulation and interpretation (i.e., deductive reasoning and
reductionistic logic) using carefully selected research designs in making sample to popu-
lation generalisations. In contrast, qualitative methodologies have relied on the concep-
tion that meaning-making endeavours constitute forms of realities as meaningful, or more
meaningful, to study than physical realities when dealing with phenomena associated
with the human experience. Qualitative studies are situated by inductive reasoning strate-
gies used to explore, describe, understand, explain, change, or evaluate phenomena with
no effort to control variables.
Relevant to this issue, Carano (2014) developed taxonomies useful in evaluating the
strength of quality of research in adapted physical activity from strong to weak. In
other words, she developed matrixes which present a set of quality indicators (criteria)
for judging the rigor of experimental (true and quasi), correlational, single-subject, and
qualitative research designs, respectively (Carano, 2014). Each matrix presents three
levels of strength of quality: level 1 represents strong evidence of rigor (quality), level
2 represents moderate evidence of quality, and level 3 indicates weak evidence of rigor
(Carano, 2014; Carano, Silliman-French, French, Nichols, & Rose 2015). In using the
taxonomies, the user first selects the taxonomy that matches the research design (e.g.,
single-subject design) and then completes the review. Next, the user determines the
level of recommendation (Sharon L. Carano, personal communication, 28 July 2015).
Established scholars as well as emerging professionals such as early career faculty and
graduate students interested in research pertaining to physical education for individ-
uals with disabilities should use quality indicators such as those appearing in these
matrixes in planning, conducting, and analysing research within the quantitative and
qualitative paradigms. The reader is encouraged to consult Carano’s (2014) work to learn
more about this comprehensive process.

Learning about and Individuals with Disabilities

through Qualitative Research
In recent years, Columna and his research teams have led an emergent line of research
involving parents and their children with visual impairments (Columna, Lepore-Stevens,
& Work, 2017; Columna, Rocco-Dillon, Norris, Dolphin, & McCabe, 2017; Columna et al.,
in press, a, b). Columna and colleagues’ scholarly work is positioned in both quantitative
(e.g., survey method) and qualitative (descriptive-qualitative using an interview approach)
research paradigms. Whereas the research teams used quantitative methods to examine
the efficacy of training interventions on treatment groups, they used qualitative meth-
ods to glean valuable understandings of the impact of such interventions from a more in
depth analysis of participants lived experiences and beliefs. The inclusion of observation
reports and extended interviews of the parents involved allowed for the researchers to
explore the lived experiences of the participants and through analysis facilitated a thor-
ough understanding of the impact of adapted physical activity on research participants
and their families.
Disability research has been largely dominated by the medical model of disability, focus-
ing on disability as internal to the person and a trait to be fixed, cured, or rehabilitated
(Haegele & Hodge, 2016). Traditionally, research in this domain has been largely quantita-
tive in methodology (Allender, Cowburn, & Foster, 2006). Large-scale quantitative studies
22 Enhancing Healthcare and Rehabilitation

can capture data trends, but are often unable to reflect issues that underlie the data such
as participant motivation or contextual factors. Methodological positivism, a core ten-
ant of quantitative research, strives for ‘value-free’ (Neuman, 2011) knowledge creation.
Disability studies scholars, on the other hand, argue that neutral knowledge about dis-
ability cannot exist in an ableist world. A positivist approach misses the underlying social
influences that create and maintain disability.
Qualitative methods, however, can provide that deeper look that research sometimes
needs. In adapted physical activity research, instead of solely informing where or when
physical activity increases, qualitative research allows us to more deeply examine the
why or how. In situating research in the qualitative research paradigm, adapted physi-
cal activity scholars, for example, can explore, explain, and interpret barriers to physical
activity and motives for change. In addition, qualitative researchers can delve into the
individual stories that make up the larger data sets. As Creswell (2013) explains, the
use of a ‘disability interpretive lens’ views the research in the context of disability as
human variation. This philosophical framework can influence all aspects of the study.
Therefore, qualitative research is often a recursive process, leading to unanticipated
mid-study changes that bring a more complete understanding of the issues studied
(Creswell, 2016; Leiter, 2015).
When disability policy and practice are informed almost entirely by quantitative
research, the individual and their experience becomes diminished. In an area so criti-
cally important as public health and so determined by motivational factors, qualita-
tive research becomes essential (Allender et al., 2006). Another advantage of qualitative
inquiry is the focus on inductive, rather than deductive, logic, beginning with observa-
tions instead of hypotheses (Leiter, 2015). This allows for revelations that might not
have been anticipated rather than confirming or failing to confirm a sub-theory (i.e.,
hypothesis). Qualitative inquiry also works in contrast to quantitative research’s focus
on statistical techniques, which reduces participants to quantifiable data, whereas, qual-
itative inquiry embraces each participant’s role and reality in the research endeavour.
For example, in the United States, the Fit Families Program (Columna, 2017) have been
a fruitful site for both quantitative and qualitative research (to be described in a later
section) and on the qualitative side focuses on empowering research participants to
create change. The relationship between researchers and participants is critical to the
success of the project, rather than striving for some neutral positivism. This work is
enhanced by the qualitative lens. Participants not only have voice in this research, but
are enfranchised as co-collaborators or research informants (Allender et al., 2006; Berger
& Lorenz, 2015; Creswell, 2013; Leiter, 2015).
As the implications of studies in adapted physical activity are relevant to public health,
this body of research is critical to healthcare professionals, parents, teachers, policymak-
ers, and many other constituent groups. Policy documents, in particular, tend to focus
on quantitative studies despite the need to look at underpinning motivational factors.
Ongoing research in adapted physical activity must prioritise the identification of motiva-
tion and barriers to inform the promotion of health and physical activity for individuals
with disabilities. Additionally, it is essential that this research, as it affects individuals with
disability, their families, and their teachers, be accessible to these constituents. Qualitative
methods, as Agger (1991) explains, help to democratise science, providing analysis that is
more easily understood outside of academia.
The Role of Qualitative Research in Adapted Physical Activity 23

Exemplars of Scholarly Rigor in Qualitative Research

In qualitative research, the ‘process of data collection involves a dynamic interaction
between the researcher and the participants and context under investigation’ (Gerdes &
Conn, 2001, p. 186). Common data collection strategies used in qualitative work include:
interviewing, observing, documenting (artefacts), and researcher immersion (Patton, 2002;
Petty, Thomson, & Stew, 2012). Through the data collection process, the researcher seeks ‘to
develop a “thick” description of the context, the participants, and the dynamic processes
that occur between and among them’ (Gerdes & Conn, 2001, p. 186). Most often researchers
in adapted physical activity use interviewing as the primary or only data source in their
qualitative studies. In those studies, however, multiple sources of data are used in order
to establish trustworthiness. Trustworthiness is one of various criteria used for judging
the rigor, credibility, and quality of qualitative inquiry (Gerdes & Conn, 2001; Zitomer &
Goodwin, 2014). Establishing trustworthiness refers to the techniques used to confirm the
credibility of the research and maintain academic and scholarly rigor (Gerdes & Conn,
2001). There are numerous techniques used in establishing a study’s trustworthiness such
as audit trails, prolonged engagement, persistent observation, triangulation, referential
adequacy, member checking, and peer debriefing (Gerdes & Conn, 2001).
Over the years, scholars of adapted physical activity research have used multiple data
sources (e.g., artefacts, photographs, and documents; researcher’s observations and field
notes; individual and focus group interviews; reflective journaling) to ensure trustwor-
thiness in their studies using multiple techniques as indicators of scholarly rigor (An &
Goodwin, 2007; An & Hodge, 2013; Grenier, 2011; Grenier, Collins, Wright & Kearns, 2014;
Leo & Goodwin, 2014, 2016; Wynnyk & Spencer-Cavaliere, 2013). Exemplars of techniques
used to ensure scholarly rigor in adapted physical activity research situated in the quali-
tative paradigm include multiple data sources and data saturation (An & Goodwin, 2007;
An & Hodge, 2013; Grenier, 2011; Grenier et al., 2014; Wynnyk & Spencer-Cavaliere, 2013);
audit trails (An & Hodge, 2013; Wynnyk & Spencer-Cavaliere, 2013); field notes (Grenier,
2011; Leo & Goodwin, 2014, 2016; Wynnyk & Spencer-Cavaliere, 2013); data triangulation
(An & Goodwin, 2007; An & Hodge, 2013; Grenier, 2011; Grenier et al., 2014; Wynnyk &
Spencer-Cavaliere, 2013); investigator triangulation (An & Goodwin, 2007; An & Hodge,
2013); method triangulation (An & Goodwin, 2007; An & Hodge, 2013); member checks
(An & Goodwin, 2007; An & Hodge, 2013; Grenier, 2011; Leo & Goodwin, 2014, 2016;
Wynnyk & Spencer-Cavaliere, 2013); participant or non-participant observations (Grenier,
2011; Grenier et al., 2014; Leo & Goodwin, 2014, 2016; Wynnyk & Spencer-Cavaliere, 2013);
peer debriefs (An & Goodwin, 2007; An & Hodge, 2013; Grenier, 2011); and reflective
researcher’s and/or participants’ journals (An & Hodge, 2013; Leo & Goodwin, 2014, 2016).
In their study, as a noteworthy example, Leo and Goodwin (2016) explored the meaning
three men and four women who experience disability ascribed to disability simulations
as a pedagogical strategy. In the extensive quote below, Leo and Goodwin explained the
criteria they used for judging the quality of their work.

Criteria for judging the quality of IPA [interpretative phenomenological analysis]

research include sensitivity to context, commitment and rigor, transparency and coher-
ence, and impact and importance perspective on disability simulations. (p. 164)
24 Enhancing Healthcare and Rehabilitation

These criteria are also known as reflexivity, credibility, coherence, and contribution, respec-
tively (Zitomer & Goodwin, 2014). Sensitivity to context was addressed by awareness of
researcher positionality and biases. The researchers possess backgrounds in adapted physi-
cal activity as well as expertise in qualitative inquiry and disability simulation use. They
acknowledge that they do not have impairments, are financially independent, and are white.
Commitment requires attentiveness to the participants and care in the analysis of each
case. The themes and a descriptive summary were shared with the participants by e-mail,
all of whom responded that their thoughts were reflected. The first author established
initial rapport with the participants through e-mail correspondence before the interviews.
Participants’ questions were answered in advance of the interviews. Rigor was established
by piloting the interview guide and completing a thorough ideographic analysis of the
data.
Coherence, or adherence to the underlying principles of IPA, was achieved through
transparent accounting of researcher position and bias and the methods used throughout
the research process (e.g., description of the participants, data collection, phases used in
the analysis). Impact and importance are satisfied if the reader is left with a new perspec-
tive, one that is interesting, useful, or important. The impact and importance of our work
lies in the effort to bring seldom-heard disability voices to the debate of simulation use and
provide the reader with a new perspective on disability simulations (p. 164).
Clearly there are many techniques used and an increasing number of scholars using
multiple strategies in their work, which are essential to scholarly rigor in adapted physical
activity research.

Computer Aided Qualitative Data Analysis Software

The reliability and objectivity of quantitative research are often heralded in their pro-
motion. To address these concerns in the subjective environment of qualitative research,
trustworthiness is of primary concern (Marshall & Rossman, 2017). The use of com-
puter software, particularly in the analysis of interview data and other artefacts, has
revolutionised the trustworthiness of qualitative data – especially when analysis of said
data is being made sense of by a group of researchers. Computer Aided Qualitative
Data Analysis Software (CAQDAS) has assisted in not only data management of the
voluminous data collected as part of the process, but also brings rigor to the analysis of
the data (Wickham & Woods, 2005). In recent qualitative studies, NVivo has been used
to organise, code, and analyse qualitative data with particular usefulness by teams of
researchers (Columna et al., 2018, 2019). Wickham and Woods (2005) further argued that
‘much of the criticism directed at qualitative research stems from a perception that the
process is not always demonstrated to be transparent or rigorous in the same ways that
quantitative research can be’ (p. 699), and that the use of CAQDAS provides for trans-
parency and significantly improves the quality of the qualitative research.
In fact, the rigor espoused by qualitative research is made transparent by the processes
involved in using CAQDAS for analysis in adapted physical activity. In research con-
ducted by the researchers (see studies by Columna et al., 2018, 2019), the process using
CAQDAS has insured that the findings of the analysis have produced findings that con-
solidate the lived experiences of adapted physical activity participants. More important,
the use of CAQDAS facilitated an expansive view of the data since the codes developed
The Role of Qualitative Research in Adapted Physical Activity 25

in NVivo were linked directly to the corresponding transcript passages, allowing for the
easy retrieval of relevant quotes. Additionally, working as a collaborative research team
provided its own organisational challenges. NVivo facilitated the proper organisation of
the data, provided a tool to verify intercoder reliability using Cohen’s kappa coefficient.
Researchers were also able to develop descriptions for each code and write linked memos
and notes to interview transcripts – allowing for the simpler identification of themes and
production of the final manuscript. Moreover, the use of computer software has enhanced
the data analysis process in qualitative studies.

Transforming Qualitative Research into Practice

Scholars in adapted physical activity are calling for the utilisation of evidence-base practice
when developing interventions for underserved populations, such as individuals with dis-
abilities. Quantitative methodologies have demonstrated that individuals with disabilities
faced multiple barriers to participate and have limited access to physical activity settings
(Columna, Fernandez-Vivo, Lieberman, & Arndt, 2015). This lack of access and participation
contributes to individuals adopting sedentary lifestyles (Pan, Frey, Bar-Or, & Longmuir,
2005). Consequently, due to inactivity, individuals with disabilities are prone to second-
ary conditions such as obesity and other health related issues (Augestad & Jiang, 2015).
Quantitative research has a significant role in the field of adapted physical activity. One such
role is the identification of areas of need or concern. Through quantitative studies, we know
that there is a need for physical activity interventions that address the barriers for individu-
als with disabilities and their families. We believe that qualitative research can support the
evidence gained from quantitative research and vice versa. As such, we advocate for the
utilisation of mixed-methods designs when designing and implementing interventions for
individuals with disabilities. Through the utilisation of both approaches, professionals may
have the tools to transform research into practice. Similarly, practice or interventions can
help shape research. One such example is the Fit Families Program (Columna, 2017).
The Fit Families Program (FFP) is a physical activity program designed to maximise
physical activity opportunities for children with visual impairments (Columna, 2017) and
for children with autism and their families (Davis et al., 2017). Prior to the delivery of the
first FFP program, our research team conducted a series of semi-structured interviews
to: (a) understand parents’ perceptions regarding physical activity (PA) experiences for
their family and children with visual impairments (VI) (Columna, Rocco-Dillon, et al.,
2017), (b) explore why families with children with VI seek out and participate in PA, and
(c) describe the strategies and supports (Columna et al., in press, a, b). The findings of
these research studies provided us with an opportunity to identify what areas we needed
to focus our intervention on and provided us an opportunity in regard to what type of
information we needed to share with the families. In essence, prior to their participa-
tion in the FFP, parents identified multiple barriers they faced when trying to engage in
physical activity and voiced the need for a PA program that meets their needs and the
needs of their children.
Based on the parental feedback, Columna and his colleagues and graduate students have
designed the structure of the program with the ultimate aim of maximising the physical
activity opportunities of the participants. This initial program consisted of four one-day
workshops focusing on the areas of: (1) orientation and mobility, (2) physical activity and
26 Enhancing Healthcare and Rehabilitation

motor development, (3) aquatics, and (4) sports. Each workshop had three main compo-
nents: (1) individual workshop for parents, (2) separated physical activities and games for
the children, and (3) joined interaction between parents and their children. This interac-
tion provided parents an opportunity for them to practice the skills learned with their
children. This also provided an opportunity for the children to display to their parents the
skills they acquired during the different activities.
After the first year of the program was concluded, the researchers conducted a series
of post program interviews to explore the impact of the program on the intentions to
participate in physical activity among the participants. The results of these studies are
published elsewhere (Columna et al. in press, a, b). In short, the findings of these studies
highlighted multiple benefits that accrued from the families’ participation in the physi-
cal activity program. For several of the participating parents, being able to take part in
FFP was an ‘eye-opening’ experience. This program allows parents to gain a deeper
understanding of their children’s ability level and allow them to learn more about a
variety of physical activities they can perform as a family. Furthermore, the interven-
tions provided their children with opportunities to socialise with other children with
visual impairments.

Using Qualitative Methodologies to Inform Future Program Directions

Qualitative research has been the foundation of FFP-based research. Whilst the research
teams highly value the contributions of quantitative methodologies, it is through qualitative
methodologies that they have been able to identify what areas are in need of improvement
in order to develop programs that meet the physical activity needs of the participants. As
such, and motivated to explore the impact of the FFP on other populations, Columna and
colleagues designed an intervention for children with autism spectrum disorders (ASD)
and their families. Similar to the previous version of the FFP for children with visual
impairments and their parents, we conducted a series of interviews to explore parents’
perceptions to physical activity, barriers, and facilitators. Preliminary findings indicated
that these families had difficulty motivating their children to take part in PA. In addition,
parents indicated that they lacked the teaching skills to teach and promote PA for their
children (Columna et al., in press, a, b).
As a result of the pre-program interviews, the FFP team designed five workshops:
(1) sensory motor activities, (2) communication, (3) physical activity, (4) aquatic, and
(5) sports. Each of these workshops was carefully designed to address the needs of
the children and their parents (Columna, 2017; Columna, Lepore-Stevens, et al., 2018;
Norris et al., 2018). According to the Diagnostic and Statistical Manual of Mental
Disorders-5, hallmarks of the ASD are sensory processing and communication disorders
(American Psychiatric Association, 2013), thus, the team focused on these issues for the
first two workshops. The present literature related to physical activity among children
with ASD indicate that these children are not meeting national guidelines related to
physical activity (Lee & Hodge, 2017). Therefore, the intent of the third workshop was to
address this issue. Further, drowning is the number one cause of death among children
with ASD, leading us to the inclusion of an aquatic program. Lastly, children with ASD
tend to participate in solitary activities. The team intended to address this through the
final workshop focused on sports.
The Role of Qualitative Research in Adapted Physical Activity 27

At the culmination of the program, the families are to be interviewed to explore the
impact of the program on their intentions to engage in physical activity with their children
with ASD and their entire family.

Qualitative Research and Its Role in the Future

of Adapted Physical Activity
Qualitative research in adapted physical activity can make academic work more acces-
sible to relevant practitioners, parents, and other stakeholders. As professionals seek to
find utility in practical terms for their work, including practitioners, parents, and other
stakeholders in the research endeavour is essential. The purpose of research should
not be limited to generating new knowledge or confirming existing knowledge or
even answering isolated questions with little or no practical use, but instead effecting
change. Qualitative research in adapted physical activity can inform policy in crucial
and practical ways.
Qualitative research provides a lens on data outside of a positivist model, a critical
stance when considering the centuries of marginalisation of individuals with disabilities.
This kind of research can honour the experiences of individuals, their families, and com-
munities. By gaining an understanding of their life experiences, the needs, wants, and
expectations of these groups can be met. Furthermore, qualitative research is essential
to the empowerment of research participants, including individuals, families, educators,
and professionals, to create change (Patton, 2002). They become enfranchised in the work.
The researcher, too, takes on a critical role in the intervention with an emphasis on built
relationships (Creswell, 2016). In the adapted physical activity field, this means listening
to and interacting with the population of interest. It is well known that individuals with
disabilities are constantly facing barriers that negatively affect their participation in phys-
ical activity. By listening to their experiences, some of these barriers can be diminished.
Similarly, research has shown that practitioners often lack the skills to effectively include
individuals with disabilities and their families into physical activity programs. As such,
through qualitative research, their attitudes, expectations, and level of comfort in working
and interacting with individuals with disabilities can be identified.
Qualitative research can help us examine complex and nuanced phenomena such as
the motivation of parents of children with disabilities or complex social issues. Adapted
physical activity researchers are engaging qualitative research endeavours to shed light
on the ways in which phenomena occur, exposing participants’ realities, and effecting
in change.

Summary and Conclusions

Over the years, various educational scholars as well as organisations (e.g., National
Research Council) have asserted that the enterprise of research is shaped by different
types of questions and that different methodologies are needed to address these
questions (Haegele & Hodge, 2015a, 2015b; Haegele & Sutherland, 2015; O’Sullivan, 2007;
28 Enhancing Healthcare and Rehabilitation

Shavelson & Towne, 2002). On the other hand, other entities (e.g., Coalition for Evidence-
Based Policy, 2003) and ‘research clearinghouses’ (e.g., the What Works Clearinghouse)
have focused mostly on the question of ‘‘whether a practice is effective and proposed
that the ‘gold standard’ for addressing this question is a single type of research
methodology – randomised experimental group designs (also called randomised
clinical trials; What Works Clearinghouse, 2003)” (Odom et al., 2005, p. 138). Our view
is broad, in that, we also believe the enterprise of research is shaped by different types
of questions and that different methodologies are needed to address these questions.
In this chapter, however, we identified and discussed quality indicators specific to
qualitative research that represent rigorous application of methodology to questions
of interest in adapted physical activity research. Established scholars and emerging
professionals interested in research pertaining to physical education for individuals
with disabilities should use quality indicators such as those appearing in this chapter
in evaluating theirs and others’ research.

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 Section II

Enhancing Healthcare
and Rehabilitation
Contemporary Applications
of Qualitative Research
3
Exploring the Value of Qualitative Comparison
Groups in Rehabilitation Research: Lessons from
Youth with Disabilities Transitioning into Work

Sally Lindsay

CONTENTS
Introduction ................................................................................................................................... 33
Youth with Disabilities Transitioning into Work – The Importance of Qualitative
Research ..........................................................................................................................................34
Personal Reflections ...................................................................................................................... 35
Qualitative Comparison Groups................................................................................................. 35
Summary ........................................................................................................................................ 47
References ...................................................................................................................................... 48

Introduction
The growing qualitative literature within rehabilitation is helping to inform evidence-
based practice and clinical decision-making (Gibson & Martin 2002; Grypdonck 2018;
O’Day & Killeen 2002; Vanderkaay et al. 2018). Qualitative research sheds light on the
in-depth experiences and perspectives of patients, which can facilitate improvements
to the rehabilitation services they receive (Vanderkaay et al. 2018). A benefit of this
type of research is that it can address the increasing focus on patient-centred care –
referring to the needs, values, and preferences of individual patients who should be
viewed as informed decision-makers in their care (Hammell 2004; Institute of Medicine
2001; Rathert et al. 2012). Understanding patient’s perspectives can enhance their satis-
faction with the services they receive and their outcomes (Rathert et al. 2012). Further,
qualitative research can provide explanations about why certain outcomes occurred
(e.g., employed, unemployed), the perceived impact of a program or intervention, and
shed light on complex processes such as self-care at work or disclosure of a condition to
employers (Grypdonk 2006). Applying qualitative methodology encourages us to look
beyond the condition or disability and to consider the whole person, their needs, and
experiences in an effort to facilitate their integration into their community (Gibson &
Martin 2002).
Given that the aim of rehabilitation is to help patients to participate in the community
whilst improving their quality of life, it is critical to understand their lived experiences
through qualitative approaches (Gibson & Martin 2002). We can do this by considering

33
34 Enhancing Healthcare and Rehabilitation

the unique circumstances, goals, values, and challenges that people with disabilities
may encounter. For example, qualitative research can enhance our knowledge of occupa-
tional rehabilitation by exploring such things as meaning, lived experience, and process
of enabling occupational engagement (Gewurtz et al. 2008). In this chapter, I draw on
examples from my qualitative research exploring youth with disabilities transitioning
into work.

Youth with Disabilities Transitioning into Work – The Importance

of Qualitative Research
Qualitative researchers increasingly recognise the importance of exploring youth’s experi-
ences (Garth & Aroni 2003; Kramer et al. 2012; Lindsay & Cancelliere 2018). Until recently
most research on youth with disabilities focused on the perspectives of healthcare pro-
viders, or their parents, whilst little was known about youth’s first-hand experiences
(Darbyshire 2000; Lindsay et al. 2013, 2015a, 2015b, 2015c). Research examining youth’s
perspectives, particularly on the topic of transition to employment, is relatively sparse
(Foley et al. 2012; Lindsay et al. 2013, 2015a, 2015b, 2015c). Most research on transitions
amongst youth with disabilities concentrates on their healthcare needs, even though
youth frequently mention wanting more assistance with vocational and employment
goals (Lindsay 2014; Lindsay et al. 2015a, 2015b, 2015c, 2018a, 2018b). Drawing attention to
youth with disabilities is salient because they are at a critical stage in their development
and may need additional support, particularly with social development and role func-
tioning (Lindsay et al. 2016a, 2016b, 2016c, 2016d). For example, disadvantages are often
compounded for youth who start life with a disability (Lustig & Strauser 2003), therefore,
gaining early employment experience is critical for enhancing their future employment
outcomes (Lindsay et al. 2013).
Understanding youth’s perspectives is essential because there are often discrepancies
between parent and clinician reports of their functioning and well-being (Lindsay et al.
2017a, 2017b, 2017c; Schiariti et al. 2014). Further, listening to youth’s experiences about
transitioning to work can help to highlight potential gaps and areas for improvement in
the programs and services they receive. Therefore, drawing on qualitative research can
add to our knowledge about how youth with disabilities transition into work by provid-
ing rich descriptions of their lived experiences regarding how their condition affects their
participation in everyday life.
Enhancing employment opportunities of youth with disabilities is important given that
their employment rate for those aged 20 years old–24 years old is 63.7% and 81.5% for those
without disabilities (Statistics Canada 2006). Employment rates are even lower for youth
aged 15 years old–19 years old (i.e., 40.1% for those with disabilities vs 51.4% for those
without disabilities) (Statistics Canada 2006). Using qualitative methodology can help to
uncover the experiences behind these trends and show us where youth may need further
support. This type of research can help us to move beyond focusing only on employment
outcomes (i.e., employed, not employed) and to explore in further depth how youth seek
and maintain employment and other meaningful occupations during their transition to
adult life.
Exploring the Value of Qualitative Comparison Groups in Rehabilitation Research 35

Most transitions to employment programs for youth with disabilities are often a one-
size-fits-all and do not account for the varying needs that youth with specific types of
disabilities have (i.e., accessibility, accommodations, self-care, and personal support needs)
(Foley et al. 2012; Lindsay et al. 2013). Further, little is known about what supports are
required to assist youth in their decisions about transitioning to employment and when
they should receive such supports (Lindsay et al. 2018a, 2018b). Research shows that transi-
tion programs for youth with disabilities have had little impact on improving post-high
school transition experiences (Foley et al. 2012). Therefore, more work is needed to con-
sider youth’s experiences of transitioning to work so we can support them in optimising
successful outcomes.

Personal Reflections
My inspiration for using qualitative comparison groups stemmed from my social loca-
tion of having my office and lab physically located within a paediatric rehabilitation
hospital. Here, researchers are encouraged to have patients, and in my case youth with
disabilities, actively involved in all stages of their research. Our hospital has been lead-
ing the way in regards to patient-engaged research (Anderson et al. 2018). Most of my
projects involve youth as advisors, mentors, or facilitators. I have hired 10 youth and
young adults with disabilities in paid positions within my lab over the past 9 years. At
first, my motivation was to help them gain valuable employment experience and skills,
but now, I find that their insight into project design and implementation is invaluable.
I have learned so much from working with these youth – not only in my day-to-day
projects, but I have the opportunity to see the abilities and future potential of these
young people. In working closely with them I have learned that we (as researchers,
employers, and clinicians) often have many incorrect assumptions about their
capabilities and particularly how they compare to youth without disabilities. As such,
I started to build comparison groups into my qualitative studies, not only to further my
own understanding, but also to showcase to others that we often have many biases and
inappropriate assumptions about people with disabilities.
The objective of this chapter is to provide an overview of why it is important to have
qualitative comparison groups and examples of how to do this within the context of youth
with disabilities transitioning into employment. Next, I describe why we should use quali-
tative comparison groups and highlight three different types of comparison groups that
I have used within the context of transitioning to work amongst youth with disabilities.

Qualitative Comparison Groups

Control and comparison groups are often used in quantitative research, but
rarely in qualitative. In quantitative studies, control groups can help to assess the
effect of an intervention (e.g., Horder et al. 2013; Le et al. 2013; Lindsay et al. 2009;
36 Enhancing Healthcare and Rehabilitation

Thomas et al. 2004). Although some studies have a qualitative component alongside
a randomised controlled trial, there are surprisingly few qualitatively driven studies
that use a comparison group. Having comparison groups embedded within a qualita-
tive design can benefit our understanding of lived experiences, and processes, whilst
highlighting how phenomena vary between groups (Lindsay et al. 2015a, 2015b, 2015c,
2017a, 2017b, 2017c; Ritchie et al. 2014; Lindsay 2019). For example, within rehabilita-
tion research, a comparison group could support us in exploring the similarities and
differences between those who have a particular condition and those who do not
(Lindsay et al. 2015a, 2015b, 2015c).
Qualitative research that uses comparison groups in their design often cite it as
a strength of their study (e.g., Dickie et al. 2009; Lindsay et al. 2015a, 2015b, 2015c,
2017a, 2017b, 2017c). Meanwhile, others note that lacking one is considered a limita-
tion (e.g., Deitrick et al. 2010; Heugten 2004; Rodriquez 2013). For example, one qualita-
tive researcher said, ‘…we have no comparison group. As a result, we cannot draw any
conclusions about differences and similarities’ (Davey et al. 2012, p. 1267). Not hav-
ing a comparison group makes it is challenging to determine whether any differences
exist between those with and without a particular characteristic (i.e., health condition).
Further, lacking a comparison group could potentially introduce bias into your study.
For instance, researchers often make assumptions about their participants by adding
their own interpretations about how they think their sample compares to others. Some
have noted this as ‘pink elephant bias’, where researchers tend to see what is antici-
pated (Morse & Mitcham 2002; Spiers 2016). Having a comparison group could help to
address some of the biases common within qualitative research by enhancing rigour
and credibility (i.e., internal validity) of the findings through persistent observation
and negative case analysis (Morse 2015). Further, comparison groups can enhance the
dependability (i.e., reliability) of the findings through a splitting of the data and dupli-
cating the analysis (see example 2 below) (Guba & Lincoln 1989; Morse 2015).
Applying comparison groups in qualitative research could also facilitate the
incorporation of varying perspectives from people who have different social positions
(e.g., youth with and without disabilities, clinician, and parent perspectives). Further,
having qualitative comparison groups can help to advance rehabilitation science
(e.g., opportunities and challenges) by adding to the rigour, quality, and credibility
whilst potentially enhancing the uptake of research by clinicians to improve clinical
practice (Vanderkaay et al. 2018).
I argue that qualitative health researchers should consider using qualitative com-
parison groups to enhance the rigour of their work and to develop a better under-
standing of how their sample compares with healthy controls. Using a comparison
group encourages researchers to think of other possibilities and also negative cases.
Through using qualitative comparison groups in my own work, I have often found
several surprising similarities and differences between groups with and without a
particular condition (Lindsay et al. 2015a, 2015b, 2015c, 2017a, 2017b, 2017c). In the next
section, I provide examples of three different types of comparison groups: (1) with and
without a condition; (2) split sample comparison; and (3) multiple perspectives com-
parison group (see Table 3.1 for overview).
Exploring the Value of Qualitative Comparison Groups in Rehabilitation Research 37

TABLE 3.1
Overview of Characteristics of Qualitative Comparison Groups
Multiple Perspectives
Healthy Comparison Split Sample Comparison Comparison

When to use • When you want to • When you want to • When you want to
understand differences understand differences understand perspectives
between those who have based on 1 characteristic of different groups on the
the condition and those among a similar group same issue (e.g., patients,
who do not (e.g., gender) caregivers, health
providers)
Sample • Both groups should be • Homogenous sample • All groups should be
homogeneous (similar (all inclusion criteria as homogeneous as possible
ages, gender, and other similar as possible with with sufficient sample
aspects associated with the exception of the 1 sizes to reach saturation
the inclusion criteria) factor that the sample is within each group
• Have at least 10–15 being spilt by (e.g., • Have at least 10–15
participants per group gender) participants per group or
or until thematic • Have a large enough until thematic saturation
saturation achieved sample (e.g., 20–30) to (within and between
(within and between ensure that thematic groups) is reached
groups) saturation is reached
(within and between
groups)
Recruitment • Both groups recruited in • Recruit both sets of • All groups should be
the same way (e.g., participants in the same recruited from the same
mailed, emailed, way, from the same or very similar location
phoned), from the same location using the same
or very similar location • Monitor recruitment to recruitment procedures
• Group with the condition ensure that the groups
should be recruited first are evenly matched as
so that the sample can be possible
matched to those without
the condition
• Closely monitor
recruitment to ensure that
the comparison group is
closely matched to the
group with the condition
Data • Same method of data • Same method of data • Same method of data
collection collection (e.g., collection and same collection and same or
interviews) and same questions for both very similar questions for
questions for both groups; groups; same all groups; same
same interviewer(s) interviewer(s) interviewer(s)
• Same place and mode of • Same place and mode of • Same place and mode of
data collection (e.g., data collection (e.g., data collection (e.g.,
face-to-face over-the face-to-face over-the face-to-face over-the
phone) phone) phone)
(Continued)
38 Enhancing Healthcare and Rehabilitation

TABLE 3.1 (Continued)

Overview of Characteristics of Qualitative Comparison Groups
Multiple Perspectives
Healthy Comparison Split Sample Comparison Comparison

Analysis • Same method of analysis • Same method of analysis • Same method of analysis
for each group (within for each group (within for each group (within
group themes) group themes) group themes)
• At least 2 researchers • At least 2 researchers • At least 2 researchers
reading all transcripts reading all transcripts reading all transcripts and
and compile list of and compile list of compile list of
preliminary themes preliminary themes preliminary themes
• Compare within and • Compare within and • Compare within and
between groups between groups between groups
• Overview table of • Overview table of • Overview table of themes
themes comparing by themes comparing by comparing by group
group group
Benefits • Helps us to understand • Helps to understand the • Highlights the areas that
similarities and role of how one are important to the
differences between those characteristic influences patient and any gaps that
who have the condition the experiences of living might exist within and
and those who do not with the condition between other
• Can highlight areas • Can highlight areas perspectives (e.g., parent
where those with a where further or or clinician)
condition need further or different supports may
different types of support be needed
• Can help to reduce bias
Challenges • Matching participants • Recruiting a large • Difficulty balancing a
for the comparison enough sample size to similar number of
group make the comparison interviews across the
• Added time and cost groups
• Feasibility of the same
mode of data collection
for all groups
Advice • Carefully document any • Recruit both • Have an overview table
ways in which the characteristics of the of themes comparing by
sampling, recruitment, sample at the same time, group
analysis differed but continually monitor • Pilot test the interview
between each group and during the recruitment guide to ensure it
consider how this may phase to ensure that the addresses key issues for
have influenced your sample is evenly all groups
findings matched (by age and
• Have an overview table other characteristics)
of themes comparing by • Pilot test the interview
group guide to ensure it
• Recruit sample with addresses key issues for
disabilities first then both groups
recruit sample without
for optimal matching
• Pilot test the interview
guide to ensure it
addresses key issues for
both groups
Exploring the Value of Qualitative Comparison Groups in Rehabilitation Research 39

Example 3.1: Healthy Comparison Group

In three studies, we compared youth with and without disabilities as they transition to
employment (see Figure 3.1) (Lindsay & Depape 2015; Lindsay et al. 2014a, 2015a, 2015b,
2015c). For example, we compared differences in job interview content between youth
with and without a physical disability. Doing so is important because people with dis-
abilities often encounter barriers based on employer’s stigma and discriminatory atti-
tudes about the abilities of people with disabilities (Lindsay & Depape 2015). Thus, we
wanted to understand how experiences compare between the two groups.
Although studies regularly show that youth with disabilities experience worse
employment rates compared to youth without disabilities (Lindsay et al. 2014a, 2014b),
we know little about how they perform in a job interview. By exploring the content of
job interviews, we can foster an understanding about how youth with disabilities may
vary in their performance compared to those without disabilities. Understanding such
differences can help to inform occupational rehabilitation interventions and also areas
where we can further educate employers about their potential unconscious biases dur-
ing the hiring process (Lindsay et al. 2015a, 2015b, 2015c).
For this study, we drew a purposive sample of 31 youth (15 with a disability and
16 without). Each youth took part in a mock job interview where the questions asked
about their skills, experiences, actions taken during workplace problem-based scenar-
ios, and areas for improvement (Lindsay et al. 2014). Our inclusion criteria involved:
youth with a diagnosed physical disability (without a cognitive impairment); cur-
rently enrolled in grade 11 or 12 of an academic/applied university stream within
high school; and currently attending an integrated high school (Lindsay et al. 2014).
Our comparison group also met the above criteria with the exception of not having a
disability (Lindsay et al. 2014).
We developed job interviews that were based on discussions with a sample of job
counsellors and employers (Lindsay et al. 2014) from industries where youth commonly
work (e.g., retail, entertainment and recreation, hospitality and food services, arts, edu-
cation services) (Marshall 2010). This allowed us to learn about skills that employers
look for when hiring youth (Lindsay et al. 2014a, 2014b). Each youth had the same ques-
tions that were given by a professional actor in the role of a human resource position.
We used a content analysis approach to analyse our data (Lindsay et al. 2015a, 2015b,
2015c). First, we immersed ourselves in the interview transcripts to understand the con-
text and developed the themes (Elo & Kyngäs 2008; Vaismoradi et al. 2013). Second,
we applied an open coding process where we read and coded each transcript whilst
noting themes. We compared and contrasted our themes (within and between the two
groups – see Figure 3.1) and grouped them under higher order headings, then generated

FIGURE 3.1
Healthy comparison.
40 Enhancing Healthcare and Rehabilitation

categories and sub-categories whilst abstracting representative quotes (Elo & Kyngäs
2008; Vaismoradi et al. 2013). Then, we organised the themes by type of participant
(youth with or without a disability) (Lindsay et al. 2014).
Our results highlighted several similarities and differences between youth with and
without disabilities regarding their job interview content (Lindsay & Depape 2015).
Similarities included youth providing examples based on their experiences from school,
emphasising their soft skills, (i.e., people and communication skills) and relevant expe-
rience (Lindsay & Depape 2015). Although both groups of youth shared comparable
examples of things they were proud of, fewer youth with disabilities gave examples
for this question. Variations in their answers between the two groups included youth
with disabilities disclosing their condition, giving fewer examples related to customer
service and teamwork, and challenges with responding to scenario-based problem-
solving questions (Lindsay & Depape 2015). Youth with disabilities also had difficulties
drawing on examples from past experiences (e.g., work, volunteer, and extracurricular
activities) (Lindsay & Depape 2015).
Our results indicate how clinicians should help educate youth on the timing and
process for disability disclosure and how to showcase their marketable skills in an
interview (Lindsay & Depape 2015). Doing this is important because employers expect
workers to have good interview skills, which includes being able to sell their transfer-
able skills (Lindsay et al. 2012, 2014). Further, employers should consider that the experi-
ences of youth with disabilities may differ from youth without disabilities. Our results
help to inform occupational rehabilitation programs and interventions by underscoring
areas where youth with disabilities may need extra support compared to youth without
disabilities (Lindsay & Depape 2015).
Occupational therapists and rehabilitation counsellors should help youth to under-
stand employers’ interest in transferable skills related to the position they are applying
for. Although many youths with disabilities have limited work experience, they could
still highlight the relevant and valuable skills they have acquired through schooling or
volunteer experience. Clinicians and educators should provide youth with opportuni-
ties to practice their interview skills so they can optimise their chances of success in an
employment interview (Lindsay & Depape 2015; Lindsay et al. 2012).
In a second example of using this type of qualitative comparison groups, we focused
on how disability confidence develops during volunteer placements amongst youth
with and without disabilities. Disability confidence refers to having comfort with, and
inclusion of people with disabilities (Lindsay & Cancelliere 2018). Lacking knowledge
about people with disabilities can adversely affect them through stigma/discrimination,
social exclusion, and poor self-image (Lindsay & Edwards 2013; Morgan & Lo 2013).
Therefore, developing a better understanding of how to improve attitudes towards
people with disabilities is critical (Lindsay & Cancelliere 2018).
A strength of our study is that we compared two perspectives including youth with
and without disabilities (Lindsay & Cancelliere 2018). In this study, we conducted 30 in-
depth interviews (16 without a disability; 14 with disabilities) with youth aged 15–25. Our
analysis involved an interpretive, qualitative, thematic approach (Lindsay & Cancelliere
2018). We read all transcripts and applied an open coding, thematic approach (Braun &
Clarke 2006). We noted patterns and themes about the development of disability confi-
dence. We first analysed all of the data together (i.e., youth with and without disabilities)
before we compared and contrasted the themes within and between the groups of par-
ticipants (see Figure 3.1) (Lindsay & Cancelliere 2018).
Our findings showed that youth with and without disabilities both had a similar
process of developing disability confidence, but there were nuances between the two
groups (Lindsay & Cancelliere 2018). For example, both groups (those with and without
disabilities) experienced some discomfort around people with disabilities and lacked
disability confidence to a certain extent. For those without disabilities, this may have
resulted from lacking exposure to people with disabilities in general. Meanwhile, for
Exploring the Value of Qualitative Comparison Groups in Rehabilitation Research 41

youth with disabilities, lacking confidence may have resulted from having disability-
specific related experience. For youth without disabilities, reaching beyond their com-
fort zone referred to being around and developing a sense of ease with people who
have a disability (Lindsay & Cancelliere 2018). Meanwhile, for youth with disabilities,
this involved having exposure to people with different types of disabilities (Lindsay &
Cancelliere 2018).
Our results highlighted that another stage in developing disability confidence involved
broadening perspectives, which included youth having social contact with people who
have a disability and challenging common misperceptions about them (Lindsay &
Cancelliere 2018). Our findings show that the development of disability confidence is
critical for enhancing the social inclusion of people with disabilities. For example, vol-
unteering with people who have a disability, or a disability different from their own,
can help develop disability confidence (i.e., positive attitudes, empathy, and appropriate
communication skills). The implications of our findings included that youth, clinicians,
and employers should consider working with people who have a disability through
employment, volunteering, or service learning to develop their disability confidence
(Lindsay & Cancelliere 2018).

Benefits and Challenges of Healthy Comparison Groups

The benefits of having this type of comparison group includes that it helps us to under-
stand the similarities and differences between those who have a condition and those
who do not. It can highlight areas where those with a condition may need further sup-
port. Further, having a comparison group can help to add rigour and reduce bias within
your study (Tomlin & Borgetto 2011). When a comparison group is not used, researchers
often implicitly use their own socio-cultural comparative perspectives (Morse 2004).
Therefore, researchers should consider using this type of comparison group when they
want to understand differences between those who have the condition and those who
do not (see Table 3.1).
It is important to design your study with a comparison group in mind and not simply
add it in after the data has been collected (see Table 3.1 and Figure 3.1). Indeed, a more
structured approach to data collection is needed so that similar issues are explored
in similar ways (Ritchie et al. 2014). For instance, the sample for both groups should
be homogenous as possible (e.g., similar ages, gender, and other aspects related to the
inclusion criteria). Further, each comparison group should be large enough to reflect
the diversity of the population so that you can look for patterns within and between
comparison groups (Ritchie et al. 2014).
Researchers should aim to have a sample size that is typical for qualitative research
(e.g., 10–15 participants) for each group or until researchers feel that they have reached
thematic saturation (within and between the groups). Researchers should ensure that
they have a similar number of participants for each variable of interest (for both groups).
The same recruitment, data collection, and analysis process should be used for both
groups. I recommended recruiting the sample that has the health condition first so that
a matching technique can be used for the comparison group (see Table 3.1). Matching
techniques are particularly useful in studies that have small numbers of participants
and can help to add rigour for enhancing the comparability of the groups (Cook et al.
2008).
If you are recruiting for both groups at the same time, your comparison sample may
end up being uneven (in number and matched characteristics), making it difficult to
know whether any differences are a result of having the condition or other factors. I rec-
ommend having some checkpoints along the way to assess where you may need to
target more specific recruitment (e.g., more males of a particular age range). Some chal-
lenges to keep in mind include that the matching participants for the comparison group
can be challenging and time consuming.
42 Enhancing Healthcare and Rehabilitation

Example 3.2: Split Sample Comparison Group

A second type of comparison group involves splitting the sample by one characteristic
(e.g., gender) (see Table 3.1 and Figure 3.2). For example, in our Lindsay et al. (2018a,
2018b) study, we compared the role of gender in transitioning to employment amongst
youth with physical disabilities. Exploring this topic is important because employment
rates vary considerably for young females with disabilities (i.e., 1%–27%) compared to
50%–75% of males with disabilities (i.e., 50%–75%) (Lindsay et al. 2018a, 2018b).
Understanding the role of gender in youths’ transition to employment is salient
because young women with disabilities often fall behind their male counterparts on
several health and social outcomes (Hogansen et al. 2008; Lindsay et al. 2018a, 2018b).
Gender shapes career aspirations, engagement in vocational training, and employment
status (Lindsay et al. 2018a, 2018b). Socio-environmental factors (e.g., domestic work and
caregiving) can also influence gender roles in a way that can impact employment out-
comes (Livingstone et al. 2016; Mattingly & Blanchi 2003). Some research shows that
women with disabilities often lack career development opportunities compared to men,
which can impact their ability to engage in paid work (Doren et al. 2011; Lindsay et al.
2018a, 2018b).
Although some research highlights the need for gender specific vocational supports
for youth with disabilities (Blackorby & Wagner 1996; Lindsay et al. 2018a, 2018b; Sung
et al. 2015), surprisingly few studies consider how gender influences employment for
young people with disabilities (Hanif et al. 2017). A recent systematic review on tran-
sitioning to employment for people with disabilities showed that gender was largely
absent (Lindsay et al. 2018a, 2018b). Of the limited research focusing on gender and
employment amongst youth with disabilities, the attention was mostly on employment
outcomes and pay differences. Therefore, there is an important need for more research
to unravel the multi-faceted relationships between gender and employment amongst
youth with disabilities (Lindsay et al. 2018a, 2018b; Magill-Evans et al. 2008), particularly
from a qualitative perspective. Understanding this intersection is imperative because
inequitable employment outcomes are significant for both men and women with dis-
abilities, compared to people without disabilities (Roebroeck et al. 2009). In addition,
investigating the role of gender is important for decision-making, communication,
stakeholder engagement, and implementation of interventions (Tannenbaum et al. 2016).
In the study that we draw on for this example, we had a purposive sample of 23 youth
involving 13 females (mean age 22.9) and 10 males (mean age 21.3) (Lindsay et al. 2018a,
2018b). We also compared youth’s perspectives to 10 clinicians that we interviewed who

FIGURE 3.2
Split sample comparison.
Exploring the Value of Qualitative Comparison Groups in Rehabilitation Research 43

are involved in the transition care of youth whilst also having a multiple perspectives
comparison group (described further in example 3) (Lindsay et al. 2018a, 2018b).
Our results showed several similarities and some difference between young males
and females with physical disabilities as they transition to employment (Lindsay
et al. 2018a, 2018b). Our findings indicate that both groups of youth should be realistic
about their abilities and often made some career adjustments based on their condition
(e.g., self-care, fatigue, etc.). We found that males and females encountered transpor-
tation challenges which they mentioned affected their ability to find employment.
Some females in particular reported problems with travelling independently, mostly
due to unease about safety and parental overprotection (Lindsay et al. 2018a, 2018b).
Further, both males and females received social support from their parents, however,
there were gendered patterns within the types of support they received. For example,
females mentioned that their mothers were often a primary source of support, whilst for
males it was often both parents or their father (Lindsay et al. 2018a, 2018b). Males told
us about contrasting experiences regarding the extent of support they received from
their family. For example, some males received support and others did not. Meanwhile,
females often drew on a more extensive social support network, which is particularly
useful when looking for a job (Lindsay et al. 2018a, 2018b). Gender differences between
males and females with disabilities were also noted in terms of requesting workplace
accommodations and asking for assistance. Specifically, females were often at ease with
requesting help, whilst most males were not. In fact, some males hid their condition
altogether (Lindsay et al. 2018a, 2018b).
Our results emphasise that youth’s decision to discuss their disability with others was
influenced by the visibility of their condition, their comfort level in disclosing, and their
inclination to ask for help (Lindsay et al. 2018a, 2018b). Males and females contrasted in
regards to their comfort level with disclosing to employers, asking for help, and request-
ing accommodations. Females articulated how they needed to feel at ease with their
supervisor before disclosing their condition and requesting accommodations (Lindsay
et al. 2018a, 2018b).
Further, we noted that although most clinicians described gender differences amongst
their clients they were helping to transition, many reported that they did not tailor their
approach based on gender (Lindsay et al. 2018a, 2018b). By comparing youth (i.e., split-
ting the sample by gender), as well as comparing with clinicians, we identified where
youth need further assistance, and importantly, where clinicians should revise their
practice and/or programming to be more patient-centred (Lindsay et al. 2018a, 2018b).
Using a comparative approach helped us to realise that clinicians should tailor their
vocational rehabilitation practices to the gender-specific needs of youth with disabilities
to best support their transition into employment (Lindsay et al. 2018a, 2018b).

Benefits and Challenges of This Approach

The benefits of having this type of comparison group includes that it helps us to under-
stand the role of how one characteristic influences the experiences of living with a con-
dition along with the similarities and differences between the two groups based on this
characteristic (see Table 3.1). This type of comparison group can also highlight areas
where further support, different types of support, or interventions may be needed. The
design, data collection, and analysis should be the same for both groups. Researchers
should aim for a homogenous sample and match as much as possible by the character-
istic that they are exploring (e.g., gender – aim to have a similar number of males and
females). Further, researchers should ensure that the sample size is large enough to
reach saturation to be able to look for thematic comparisons within and between the
groups. Finally, it is also important to give a rationale why this type of comparison is
needed and what it will add to the literature.
44 Enhancing Healthcare and Rehabilitation

Example 3.3: Multiple Perspectives Comparison Group

Another example of a comparison group involves having multiple perspectives (see
Table 3.1, Figure 3.3). Having comparison groups are important because considerable
evidence shows that patients often do not share the same priorities or perceptions
of problems as clinicians or parents (Lindsay et al. 2017a, 2017b, 2017c). Our team
has conducted studies focusing on transition to employment for youth with disabil-
ities whilst comparing different perspectives (e.g., parents, clinicians, and youth).
For example, in our study on school-to-work transitions amongst youth with spina
bifida, we explored three different perspectives (i.e., youth, parents, and clinicians)
(Lindsay et al. 2017a, 2017b, 2017c). Supporting youth with disabilities to transition
to employment is salient because the impact of having limited job experience at a
young age on their longer-term employment outcomes is profound (Lindsay et al.
2015a, 2015b, 2015c; Liptak et al. 2010). Amongst youth without disabilities, being
employed is often seen as an indicator of thriving transition to adulthood (Lindsay
2014; Lindsay et al. 2015a, 2015b, 2015c). Employment is an important and meaningful
activity that offers income, social relationships, social inclusion, and enhanced qual-
ity of life (Lindsay 2014; Lindsay et al. 2015a, 2015b, 2015c). Youth with spina bifida
have unique needs as they transition to adulthood and are susceptible to unemploy-
ment (Zukerman et al. 2010). They may also encounter challenges in caring for the
medical aspects of their condition at work and the associated stigma and discrimina-
tion that often accompanies it (Zukerman et al. 2010). Unemployment rates are high
amongst youth with spina bifida. For example, more than half of those who finish
school do not have a regular job (van Mechelen et al. 2008). Although such unemploy-
ment trends are consistent amongst youth with disabilities, we know very little about
the experiences and perspectives of school-work transitions amongst youth with
spina bifida and their caregivers (Cohen et al. 2003; Lindsay et al. 2017a, 2017b, 2017c).
Therefore, developing a better comprehension of school-work transitions amongst
youth with spina bifida is helpful for informing approaches to assist their entrance
to college and work.
Until recently, most studies on employment amongst people with disabilities focussed
on adults who are returning to work after injury or illness (Paniccia et al. 2018). Much
less is known about youth with disabilities, especially those who are looking for their
first job (Lindsay 2014). Second, there is little research on the work experiences of youth
with physical disabilities and even less so on spina bifida in particular (Lindsay 2014;
Lindsay et al. 2015a, 2015b, 2015c). The relatively sparse literature on this topic tends to
focus on youth with various types of disabilities, without discerning the diverse needs
related to specific disabilities (Lindsay et al. 2017a, 2017b, 2017c).

FIGURE 3.3
Multiple perspectives comparison.
Exploring the Value of Qualitative Comparison Groups in Rehabilitation Research 45

Exploring youth with spina bifida is important because most youth with this condi-
tion do not live independently, are less likely to be employed (34% vs 75%), and to go
to college than youth without disabilities (49% vs 66%) (Cohen et al. 2003; Zukerman
et al. 2010). Although youth with spina bifida are often aware of the benefits of working,
they often lack goal-oriented plans to achieve this outcome (Lindsay et al. 2017a, 2017b,
2017c). Further, some research shows that youth with spina bifida are often delayed in
transitioning to adulthood and may need further support in pursuing education and
finding employment (Lindsay et al. 2017a, 2017b, 2017c; Ridosh et al. 2011). Of the few
studies that explore youth with spina bifida, they are quantitative and focus on employ-
ment outcomes. Thus, having a more qualitative approach is relevant for revealing the
barriers and enablers to realising vocational milestones (Lindsay 2014). Further, few
comparisons have been made between varying perspectives (e.g., youth, parents, and
clinicians) on school-work transitions amongst youth with disabilities. By drawing such
comparisons, we aim to unearth further understandings of the complexities of school-
work transitions amongst youth with spina bifida (Lindsay et al. 2014).
Within this comparison study, we investigated the enablers, barriers, and experiences
of employment and post-secondary education amongst youth with spina bifida, and
how perspectives on these issues vary between youth with spina bifida, their parents,
and healthcare providers (Lindsay et al. 2017a, 2017b, 2017c). We led in-depth inter-
views with 44 participants (21 youth, 11 parents, 12 clinicians). We used purposive sam-
pling procedures to recruit all participants from one paediatric rehabilitation hospital
(Lindsay et al. 2017a, 2017b, 2017c).
We used a qualitative content analysis approach to investigate the data, which is useful
for capturing key themes across a large qualitative dataset (Graneheim & Lundman 2004;
Sawin et al. 2009). First, we used NVivo to extract all relevant quotes from the transcripts,
based on the words ‘school’, ‘employment’, and related synonyms (e.g., job, work, high
school, post-secondary, college, university, co-op, internship, volunteer, scholarship,
accommodation). We also read all the interview transcripts to ensure this stage of analysis
was comprehensive and captured all relevant quotes related to school and employment
(Lindsay et al. 2017a, 2017b, 2017c). Next, we extracted quotes and organised them into logi-
cal categories through an iterative process (Graneheim & Lundman 2004). We reviewed all
of the extracted quotes several times, whilst observing themes and patterns within and
between the groups of participants (i.e., youth, parents, and clinicians) (see Figure 3.1).
Our results indicated similarities and differences across the groups. For example, cli-
nicians wanted to help youth understand the life skills that are needed to support their
employment goals (Lindsay et al. 2017a, 2017b, 2017c). They also underscored that youth
should be capable of managing the medical aspects of their condition at work. Clinicians
described that more assistance is needed to help youth with spina bifida to connect to
employment training. Although many clinicians stressed the value of volunteering for
youth, they were often unaware of the potential benefits it can offer for transitioning to
employment. Some youth who completed high school often saw the advantages of vol-
unteering for acquiring work-related skills, developing social networks, and exploring
career options (Lindsay et al. 2017a, 2017b, 2017c).
Youth shared their worries about transitioning to college and work, struggled to gain
independence skills, which were often due to a lack of resources and/or overprotective
parents (Lindsay et al. 2017a, 2017b, 2017c). Meanwhile, parents also reporting needing
support on how to let go and encourage their youth to develop skills that would help
them with their transition to adulthood. Both groups (parents and youth) found it chal-
lenging to manage the ongoing care of their condition (Lindsay et al. 2017a, 2017b, 2017c).
Many youth and parents recognised the barriers involved in obtaining a job or vol-
unteer placement that matched their interests and abilities (Lindsay et al. 2017a, 2017b,
2017c). Although some supports are available, youth with spina bifida face barriers in
transitioning to work including a discrimination and stigma; challenges coping with
their condition; and lack of information on finances, housing, and transportation.
46 Enhancing Healthcare and Rehabilitation

Our findings highlight that clinicians should assist youth with preparing for their tran-
sition to employment by connecting them to appropriate information and resources.
Starting from a young age, parents and clinicians should help youth prepare for work
transitions by promoting their career goals, independence, life skills, and self-care of
their condition (Lindsay et al. 2017a, 2017b, 2017c).
Another example of multiple perspectives comparison groups included our study
that explored the barriers to employment for youth with disabilities compared to youth
without disabilities whilst also considering the views of employers and job counsellors
(Lindsay et al. 2015a, 2015b, 2015c). Exploring this is important because there have been
very few comparisons of how employment barriers encountered by youth with disabili-
ties differ from youth without disabilities. Understanding these similarities will con-
tribute to the further development of job training and life skills interventions and help
to direct efforts to support for work environments (Lindsay 2011; Lindsay et al. 2012).
Focusing on youth with disabilities is salient because early job experience during ado-
lescence is critical to obtaining future employment and income (Carter & Lunsford
2005; Lindsay et al. 2012). Most previous research focuses on individual level chal-
lenges, whilst a gap exists regarding other socio-structural factors influencing work.
Comparing multiple perspectives is useful for uncovering the multi-faceted barriers to
employment for youth with disabilities (Lindsay et al. 2015a, 2015b, 2015c).
Our study drew on 50 qualitative in-depth interviews with a purposive sample of 31
youth (16 without a disability and 15 with a disability) and youth employers and job
counsellors knowledgeable about employment readiness amongst adolescents (n = 19)
(Lindsay et al. 2015a, 2015b, 2015c). We analysed the data by reading each transcript sev-
eral times to uncover themes about factors influencing work for youth with and with-
out disabilities. We first analysed all groups of participants separately (i.e., youth with
and without disabilities and employers) before we compared and contrasted themes
between the two groups. After developing a list of themes, we compared and contrasted
using a constant comparative method within and between the groups (Lindsay et al.
2015a, 2015b, 2015c).
Our findings showed that only half of youth with a disability were working or
looking for work compared to youth without disabilities (Lindsay et al. 2015a, 2015b,
2015c). The results indicate that this was a result of different attitudes towards youth
with disabilities. For many youths with a disability, their peers, family, and social net-
works often posed a barrier to them getting a job. Many youths lacked independence
and life skills that are needed to get a job (i.e., self-care and navigating public trans-
portation) compared to their peers (Lindsay et al. 2015a, 2015b, 2015c). Job counsellors
focused on linking youth to employers and mediating parental concerns. Meanwhile,
employers appeared to have weaker connections to youth with disabilities. System
level barriers included lack of funding and policies to enhance disability awareness
amongst employers (Lindsay et al. 2015a, 2015b, 2015c). Youth with physical disabili-
ties experience some similar barriers to finding work compared to youth without
disabilities, but to a greater extent. The results highlight that although there are sev-
eral challenges in finding work for youth at the individual level, they are linked
with larger social and environmental barriers (Lindsay et al. 2015a, 2015b, 2015c).
Job counsellors focused on linking youth to employers and mediating parental con-
cerns. Employers appeared to have weaker connections to youth with disabilities
(Lindsay et al. 2015a, 2015b, 2015c).
We found several similarities and differences in the type and extent of barriers
encountered for youth with disabilities compared to youth without disabilities, how-
ever, disadvantages may be compounded for youth with disabilities (i.e., discrimina-
tion and inaccessible environments) (Lindsay et al. 2015a, 2015b, 2015c). There are fewer
youth with a disability who are working or looking for work and may need more help
and encouragement with life skills to help them achieve independence. It is important
to remember that finding employment is not simply about individuals preparing for
Exploring the Value of Qualitative Comparison Groups in Rehabilitation Research 47

work, it is also about society, employers, and work environments accommodating and
being inclusive of people with disabilities (Lindsay et al. 2015a, 2015b, 2015c).
The implications of our findings include that clinicians should help develop skills that
can lead to improved self-confidence and communication skills for youth. They should
encourage youth to engage in extracurricular activities and social networking to build
these skills and to help make connections for finding work (Lindsay et al. 2015a, 2015b,
2015c). Clinicians should support youth and their parents in practicing independence skills
(i.e., self-care, self-advocacy, and navigating public transportation) that they need prior to
looking for employment. Occupational therapists and rehabilitation clinicians should edu-
cate youth about disclosing their condition to potential employers, how to ask for ask for
accommodations, and how to market their abilities (Lindsay et al. 2015a, 2015b, 2015c).

Benefits and Challenges of Multiple Perspectives Comparison Group

Multiple perspectives comparison groups should be used when researchers want to
understand viewpoints of different groups (e.g., patients, caregivers, healthcare pro-
viders) on the same issue (see Table 3.1 and Figure 3.3). Benefits of this type of com-
parison group include that it can highlight the areas that are important to the patient
(and enhance patient-centred care) and also any gaps that might exist within and
between other groups (e.g., parent or clinician). When using this method, researchers
should ensure that all groups are as homogeneous as possible with sufficient sample
sizes to reach saturation (within and between groups). All groups should be recruited
in the same or very similar location using the same methods (e.g., interviews for all
groups, interviewed separately) and data collection procedures. It is also helpful to have
an overview table of themes comparing by the different groups. Challenges in using
this type of comparison group include that it is sometimes difficult to balance a similar
number of interviews across the different groups.

Summary
Qualitative research can help to inform the development and refinement of rehabilitation
services (i.e., clinician-patient interactions, lived experiences, clinical decision-making,
program, and intervention development). Having a patient-centred approach involves
focusing on the values, priorities, and goals of the patient rather than those of the thera-
pist. It can help clinicians to understand how to adapt processes and programs and clini-
cal decision-making (Grypdonck 2018). Further, developing a better understanding of the
lived experiences and perspectives of youth with disabilities can help to inform health
and social programs and interventions, particularly those that can help with their transi-
tion to adulthood (Lindsay et al. 2017a, 2017b, 2017c). Qualitative research can contribute
to the development of theory, practice, and service delivery (Hammell 2004). It can also
help to reaffirm or further develop theoretical frameworks, expose limitations in current
theories, or identify previously unrecognised relationships of a phenomenon (Hammell
2004). This type of research also helps to contextualise research by considering the larger
socio-cultural and environmental structures that affect people’s lives (Hammell 2004).
In considering the use of qualitative comparison groups, it is important that quali-
tative researchers do not make comparisons to healthy controls within their results
and discussion sections if they have not used a comparison group in their study. When
qualitative researchers use a comparison group, they should be clear about their meth-
ods and analysis involving comparison groups (i.e., what they are doing, why, and how).
48 Enhancing Healthcare and Rehabilitation

Although comparison groups may add a bit more time and cost to the study, they can also
add rigour by addressing potential bias, and help us to understand how a group compares
to another. To conclude, qualitative researchers should consider adding comparison groups
to their design because they can offer a valuable approach to enriching their data and
understanding patient experience.

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4
Unravelling the Irrational – Addressing
the Subjective Nature of Sexual Risk-Taking
through Qualitative Research

Simon Bishop

CONTENTS
Sex as a Risk Behaviour ................................................................................................................ 53
Sex Tourism, Risk and Rationalisation in Thailand .................................................................54
The Value of Qualitative Approaches in Sex Research ............................................................ 58
Conclusion ..................................................................................................................................... 60
References ...................................................................................................................................... 60

Sex as a Risk Behaviour

Sex is something that most people engage in, particularly during the middle years of life.
Although commonly a facet of long-term, romantic relationships, not all sex takes place
within this context, some sex is casual, whilst yet more is distinctly commercial. The
results of the 2010 British National Survey of Sexual Attitudes and Lifestyles suggest that,
on average, 3.6% of British men and 0.1% of British women regularly choose to pay for sex
(Mercer et al. 2007). Yet, whether practiced for procreation, recreation, or another social or
economic purpose entirely, throughout recorded history this activity, a blissful pastime for
so many, has walked hand-in-hand with disease and death (Taithe 2001).
Whenever we cross the street, get on our bicycle, or drive our car to work we are tak-
ing a risk. Yet most of us give little thought at all to these sorts of risks because they are
familiar to us, lessened in their perceived danger because of their ubiquity (Thompson
et al. 1990; Tansey and O’Riordan 1999). At apparent odds with logic, such contradiction
between objectively real risk and subjectively perceived risk is present everywhere in our
lives. From road travel, what we choose to eat, and with whom and how we choose to
have sex, there is often a dissonance between what the numbers say about the risks that
we take and how we understand and engage with these risks in practice. This is not to
downplay the importance of numbers, of quantitative data, as they provide an excellent
way to represent risk as a statistical probability and the only way to make robust infer-
ences within and between populations (Bryman 2008). The problem is that quantitative
data can only ever illuminate part of the picture, informed as they are by an epistemology
that seeks to explain complex systems by reduction to their fundamental parts. Whilst of
great utility in identifying at-risk groups, or particularly risky activities or behaviours, this
approach is not well-equipped to engage with people’s subjective understandings of risk,
their motivations for taking risks, or the ways in which they might seek to mitigate such

53
54 Enhancing Healthcare and Rehabilitation

risks in their own mind. In seeking to grapple with this dissonance, this chapter engages
with a very particular type of sexual risk (unprotected sex with commercial sex workers),
practiced by a very particular group of people (Western male sex tourists to Thailand).
Sexually transmitted infections (STIs) represent an especially important challenge to
good sexual health, collectively taking a substantial toll on the well-being of the world’s
population. The WHO (2016) suggests that more than a million new cases of sexually
transmitted infections are contracted globally every day. A large proportion of these are
bacterial infections, including syphilis, gonorrhoea, and chlamydia, all of which are usu-
ally curable with the use of antibiotics. Additionally, there are also a number of viral infec-
tions that can be transmitted sexually, such as genital herpes, human papilloma virus, and
hepatitis B and C that are more difficult to manage clinically (Colson and Raoult 2016).
However, it is the human immunodeficiency virus (HIV) that has had the greatest pub-
lic health impact globally in recent years (Fairchild and Bayer 2011; Mykhalovskiy 2015),
as it can lead, if untreated, to acquired immune deficiency syndrome and a premature
death (Cooper et al., 2013). For those fortunate enough to be able to access it, the advent
of highly active anti-retroviral therapy has meant that HIV has become a chronic dis-
ease, unlikely to significantly shorten life (Delpech 2013). However, infection, whilst not
necessarily life-limiting anymore can still be life-changing, impacting on many of the psy-
chological, physical, and social needs of those with the virus (Webel et al. 2014; Monteiro
et al. 2016). The correct and consistent use of condoms has been shown to be highly effec-
tive at reducing the transmission of STIs, including HIV (Regan and Morisky 2013). Yet
despite this, and for a variety of reasons, many people still do not use condoms, even when
they have sex with multiple partners. Mercer et al. (2013) report that in 2010 in Britain, 7.6%
of men and 4.9% of women had sex with two or more partners without using a condom –
rates that were particularly high (up to 16.4%) amongst younger men. Since the emergence
of the HIV pandemic in the 1980s, the United Kingdom (UK) government’s attempts to
protect the population from the threat of HIV/acquired immune deficiency syndrome have
focused predominantly on promoting safer-sex through the use of condoms (Kippax and
Race 2003). Yet despite these efforts, the prevalence of HIV has continued to rise amongst
heterosexuals (Public Health England 2017). Through an analysis of the UK national HIV
database, Rice et al. (2012) identified that roughly 15% of new HIV diagnoses in UK-born
persons between 2002 and 2010 were acquired outside the UK, the highest number of these
were found amongst men who had been infected in Thailand.

Sex Tourism, Risk and Rationalisation in Thailand

Thailand is located at the centre of the Indochina peninsula in Southeast Asia and is an
important tourist hotspot in the region, attracting in excess of 35 million visitors each
year (Reuters 2018). Most come to enjoy the vibrant cultural heritage and outstanding
natural beauty that the country has to offer, however, Thailand also holds the rather
unenviable reputation of being one of the most important global destinations for sex
tourism (Williams 2002; Singh and Hart 2007). The term ‘sex tourism’ refers to the usually,
although not exclusively, male practice of travelling overseas in order to participate in paid-
for sexual activity with commercial sex workers (Mercer et al. 2007; Manieri et al. 2013).
Although prostitution is technically illegal in Thailand (Khruakham and Lawton 2012), it
contributes significantly to the economy and so remains widespread and highly visible.
Unravelling the Irrational – Addressing the Subjective Nature of Sexual Risk-Taking 55

Patpong and Soi Cowboy in Bangkok throng with go-go bars and massage parlours, as
does Patong on the island of Phuket, and much of the city of Pattaya (Garrick 2005; Hobbs
et al. 2011). In addition to this type of venue-based sex work, there are also large numbers
of women working directly from the street in most towns and cities (Singh and Hart
2007). Of itself, this represents an important social problem for Thailand through the
exploitation of largely poor, frequently disempowered Thai women who come from areas
such as Isaan in the rural heart of the country (Crawford 2006). However, this situation is
made worse because much of the paid-for sex that these women find themselves supplying
takes place without the use of a condom, placing both themselves and their customers
at risk of acquiring sexually transmitted infections, including HIV. During their study,
Manieri et al. (2013) identified inconsistent condom use amongst groups of Swedish male
sex tourists to Thailand, with 20% of those interviewed reporting their planned intention
to engage in unprotected sex with female sex workers there. The study authors reported
that, because of their average age (over 40), these men should have been exposed to the
peak of government safer-sex messages during the 1990s, and yet no explanation for their
contrary risk-taking behaviour was suggested.
Motivated by the absence of an explanation for a behaviour that appeared to suggest
abject recklessness, in 2014, we participated in a piece of qualitative research designed to
try to get a better understanding of the nature of sexual risk-taking by Western male sex
tourists to Thailand (Bishop and Limmer 2017). Whilst some qualitative evidence already
existed around exploring condom avoidance by men, most of this focused on men who
have sex with men (Greene et al. 2014; Goldenberg et al. 2015) or men from economically or
socially deprived backgrounds (Peterson et al. 2010; Bowleg et al. 2011; Limmer 2014). Yet
limited attention had been given to understanding non-condom use amongst heterosexual
men from less disadvantaged backgrounds, with sufficient affluence to be able to travel
overseas and who were likely to be well-educated enough to be aware of the risks that
they were taking. However, it was not just about the men, it was about the women too. The
majority of safer sex interventions in Thailand to date have been geared towards trying
to encourage female sex workers to use condoms with their clients (Wariki et al. 2012) and
moderate success has been achieved through a combination of targeted health promotion
advice and the distribution of free condoms (Treerutkuarkul 2010). However, the peren-
nial problem is that in most commercial sexual transactions of this type, the power lies
firmly with the demand-side of the arrangement, which is the men (Okal et al. 2011; Urada
et al. 2012). Additionally, as many female sex workers in Thailand are trafficked for sex
by a third-party with a vested interest in them, they are often subject to intimidation or
violence should they fail to earn sufficient money (Decker et al. 2011). As a result, although
some negotiation may be possible, there is a tremendous amount of pressure on these
women to give in to demands for unprotected sex. Yet, whilst this may explain why some
Thai female sex workers participate in unprotected sex with male sex tourists, it does not
explain why any Western man would want to take the risk in the first place. Ironically, it
emerged that many of the men in our study did not think that they were taking any real
risk at all.
The study analysed data from two different sources, in-depth face-to-face interviews
with Western men in Pattaya, Thailand and online discussion boards used by male sex
tourists to share ideas and experiences between each other virtually. Across both these
sources, men frequently reported engaging in unprotected sex with female sex workers
in Thailand, primarily because they enjoyed the experience more without a condom. The
most common arguments for not using condoms were that they numbed the pleasure,
a view often expressed by men in other settings (Dove et al. 2006; Calabrese et al. 2012;
56 Enhancing Healthcare and Rehabilitation

Geter and Crosby 2014), and that they stripped away the authenticity of having ‘real’ sex.
Whilst men often sought to engage in unprotected sex with female sex workers, they were
not ignorant of the fact that every time they did so they ran the risk of acquiring an STI.
Collectively, this placed them between the ‘rock’ of not wanting to use a condom and the
‘hard-place’ of not wanting to contract an STI either. Whilst the majority of men acknowl-
edged that engaging in unprotected sex with sex workers potentially carried some health
risks, the perceived relevance and significance of these risks varied substantially. Oral
sex was widely considered not to be a risk behaviour at all, and something that could be
engaged in with impunity. Unprotected vaginal sex (referred to as ‘barebacking’) with
sex workers was more contested, but there was an inescapable tension. Whilst most men
considered participating in vaginal sex without the use of a condom to be a higher risk for
STI transmission than oral sex, the fact remained that condoms were viewed very nega-
tively, not as a source of protection, but as a barrier to pleasure. This tension between risk
and pleasure underpinned negotiations around condoms that were driven by two broad
considerations – firstly, the likelihood of contracting an STI from a sex worker as a result
of participating in an unprotected sexual act, and, secondly, if this occurred, what impact
the STI would have on their lives. Overall, although few men underplayed the seriousness
of HIV as an STI, it was largely viewed as being a homosexual disease, which heterosexual
men need not really fear. This made HIV a high consequence, but low probability infection
for many of these men, they were aware that the disease could be devastating if contracted,
but felt that there was very little risk of that actually happening to them.
Having largely rationalised themselves out of harm’s way with regard to HIV, the men
still had other STIs to deal with. Other viral infections, such as herpes or hepatitis B, did
not figure within their narratives. Bacterial STIs such as gonorrhoea, however, were well
known and the consequences familiar, with men frequently reporting having contracted
one of these infections at some point in the past. In response to this threat, there were a
number of protective strategies employed that were felt to be able to lower the odds of con-
tracting an infection whilst still avoiding the need to use condoms. One of the simplest risk
reduction strategies involved visual appraisal, either based on a woman’s age (younger was
considered safer) or else a subjective evaluation of their physical condition, with excessive
thinness being associated with potential disease and something to be avoided. Beyond
this physical appraisal, there was also a general sense of a geography of risk whereby sex
workers from different venues were felt to have different degrees of sexual risk attached
to them. Women who worked in bars and massage parlours were considered to pose the
least risk as the belief was that they were subject to regular sexual health testing, although
this was never evidenced beyond anecdote. There was sometimes an even more nuanced
approach to this whereby some bars, particularly those with a Western owner, were con-
sidered to be safer than others by only employing sexually healthy women. The rationali-
sation here was that Western bar owners were particularly keen on ensuring that the sex
workers operating from their venues were free of STIs in order to maintain a good reputa-
tion with their customers. In contrast, non-venue-based sex workers, typically those who
worked from the street, were considered to be much higher risk than women from bars,
they were not subject to the same sexual health checks that men believed venue-based sex
workers were and, as such, represented an unknown, an uncontrolled, risk. Further, it was
argued that as all sex workers would probably prefer to work in venues rather than being
out on the street, the only logical reason why they were not doing so was that they were
already carrying an STI and would fail the required sexual health checks. In Pattaya, the
majority of non-venue-based sex workers congregate on Beach Road, a busy road along
the Pattaya shoreline that was frequently referred to as the ‘Coconut Bar’ by interviewees
Unravelling the Irrational – Addressing the Subjective Nature of Sexual Risk-Taking 57

due to the stands of coconut trees that frame its margins. Amongst most of the men inter-
viewed, having sex with a sex worker from Beach Road was considered to present an
unreasonably high-risk, and one which none openly admitted to taking.
Aware that their homebrewed screening systems remained fallible, there were addi-
tional steps that some men felt they could take in order to seek to mitigate their risks of
contracting a bacterial infection once an appropriate partner had been selected. Washing
of the genitals with vinegar or antiseptic, both prior to and following the sexual act, was
one strategy believed to kill potentially harmful bacteria and allow for safer sex, as was
the use of coconut oil as an antibacterial lubricant. The prophylactic use of the antibiotic
azithromycin (Zithromax), available from pharmacists without prescription in Thailand,
was also employed by men to permit planned unprotected sex with sex workers without
fear of (bacterial) consequence. However, the most frequently reported method of reduc-
ing the risk of acquiring an STI was arguably the least scientifically credible and hinged
solely on relabelling a sex worker to a girlfriend, and so recategorising them from high-
risk to effectively no-risk. Across the data, but almost ubiquitously within the interviews
in Pattaya, men argued that they were not really in Thailand for sex, but rather to find
romantic love. They often recounted how they had met their present Thai ‘girlfriend’ or
how long they had been together, occasionally sharing photographs carried around in
their wallets. So common was the phenomenon of the Thai girlfriend amongst these men,
that finding a sex tourist in Pattaya who did not profess to be, or to have been, in such a
relationship represented a notable exception.
Across all of the data, it was clear that many of the Western male sex tourists in this study
were relying on a complex and overlapping system of risk control strategies – some practi-
cal, others conceptual – that they felt reduced the health risks of engaging in unprotected
sex. The question then arose as to where men acquired these beliefs, contrary as they were
to all conventional health promotion messages that highlight risk and advocate condom
use. In the end, it turned out that it was the views of other sex tourists, co-constructed and
distributed internally, that were the primary source of risk information for these men. In
addition to being social venues, bars also operated as informal centres of learning for sys-
tems of peer knowledge and practice (outside of Thailand the discussion boards fulfilled
this purpose). Male sex tourists in Pattaya tended to spend much of the day drinking with
each other in small, gender-homogenous groups, and it is in these settings that beliefs
were reconstructed as knowledge and shared. The men privileged information acquired
from peers over all other sources because it was considered to have been tried and tested,
and so was demonstrably reliable. Of course they were aware of external health informa-
tion and advice that warned them about the risks of having unprotected sex and advised
them to use condoms, the problem was that these messages did not tally with their own
experiences or with those of their peers (insider information). Several even considered
government sexual health advice to be a way of trying to control their behaviour and
stop them from doing what they wanted to. Consequently, information that came to them
via mainstream media (outsider information), whether it was part of a health promotion
campaign or simply a news story, was subordinated, distrusted as having ulterior motives.
There are a number of take-home messages to come from this study that may be usefully
applied in attempting to increase condom usage amongst this, and perhaps other similar
groups of men. To begin with, HIV needs to be reframed more clearly, not only as a homo-
sexual disease, but as an infection that can be contracted by any sexually active person.
Although this may appear obvious to many people, and has long been the central message
of the majority of safer-sex campaigns (Kaye and Field 1997; Treerutkuarkul 2010), it was
strongly contested here. Secondly, other STIs need to take more of a centre stage in the
58 Enhancing Healthcare and Rehabilitation

health promotion arena, emphasising perhaps the potential consequences of acquiring one
of the emerging drug-resistant strains of gonorrhoea (WHO 2016), since this was a disease
that these men felt more vulnerable to as heterosexuals. However, if this is the educational
‘payload’, more thought also needs to be given to the ‘delivery system’, as traditional lines
of health communication were insufficient. Overall, very little weight was given by men
to external health promotion messages, which were largely distrusted and so disregarded.
A similar study conducted in Finland on men who engaged in paid-for sex with female
sex workers (Regushevskaya and Tuormaa 2014) also found that condom use was not at all
a concern among many there. As with the men in Thailand, wider health promotion mes-
sages that should have informed their behaviour were subverted by personal experience,
and this subversion was then shared with other men via online discussion boards. For
groups like these, where internally generated knowledge is valued far more highly than
external knowledge, it seems clear that health promotion information needs to come from
inside the community in order to be accepted within existing internal constructions of
risk. Without this paradigm shift, the wider public health community may shout as loudly
as it wants and still not be heard.

The Value of Qualitative Approaches in Sex Research

It is an empiricist fallacy (Roberts 1997) to suggest that only quantitative research con-
ducted on participants, rather than qualitative research conducted with participants is
the only way, or even the best way, to understand human behaviour. By its very nature,
qualitative research seeks to explore and explain the world through an understanding of
the subjective experiences of social actors. A qualitative approach is far better equipped
to help us to unpick and begin to address sexual risk-taking behaviours, informed as it is
directly by evidence from those taking the risks and not solely on assumptions made by
others. It interrogates the relationship between knowledge, experience, and action, explor-
ing the social factors that influence these interactions. Its pre-eminent strength, particu-
larly when dealing with the subjective nature of social reality, stems from its premise that
there is no single truth in terms of what and how we experience and understand our social
world (Bryman 2008). Even the use of questionnaires, which often promise some degree
of deeper understanding, are a poor tool for interrogating populations as the questions
asked, and the language used, largely depends on the (potentially flawed) assumptions
of the researcher. Whilst these may be mitigated to some extent by attempts at validation,
they will always be born of the researcher and never of the subject. However, contrary
to popular opinion, qualitative research is not the opposite of quantitative research, the
concept of ‘measurement’ is not necessarily absent in the qualitative (Popay and Williams
1998). Qualitative methods may still measure things, albeit in a different way to quanti-
tative approaches, with concepts often being identified as being more or less prominent
within data. Ideas, concepts, or themes may even be physically counted in order to work
out their relative importance within the overarching narrative, words such as ‘more’, ‘less’,
‘better’, or ‘worse’ may also crop up in qualitative data as measurements of the subjective.
A perceived lack of generalisability has frequently been a concern, but although qualita-
tive research may not be ‘probabilistically generalisable’, it is often ‘logically generalisable’
(Popay and Williams 1998), and it has been argued that one of the key measures for good
qualitative research is that its findings should be transferable between similar populations
Unravelling the Irrational – Addressing the Subjective Nature of Sexual Risk-Taking 59

(Hammersley 1992). In terms of Western male sex tourists at least, this appears to be largely
true, with condom avoidance, risk rationalisation, and the romanticisation of essentially
commercial relationships being found across a variety of settings not just in Thailand, but
as far apart as the Dominican Republic (Murray et al. 2007), Mexico (Syvertsen et al. 2015),
and the Philippines (Regan and Morisky 2013). Qualitative approaches have also shown
themselves to be particularly well suited to conducting studies on hard-to-reach at-risk
populations, as well as being a way of identifying and understanding risk behaviours,
because they typically seek to draw out embedded meanings rather than just collect ‘facts’
(Faugier and Sargeant 1997; Peterson et al. 2008; Dhalla and Poole 2011), focusing on the
‘how’ and the ‘why’ rather than merely on the ‘what’. By exploring not just what peo-
ple do, but also why they do what they do, allows such subjective and personal concepts
to be interrogated and hopefully understood (Ailinger 2003). Only through this deeper
understanding may robust health promotion interventions be tailored specifically to best
fit the needs of the target group. Research into HIV, in particular, has highlighted the role
of qualitative research in both understanding the social context of risk behaviours and
for developing pragmatic recommendations for appropriate interventions (Rhodes 2000,
Dowson et al. 2012; Rosen et al. 2018).
Qualitative evidence has been used effectively in several settings in order to guide and
underpin sexual health interventions. The Women’s CoOp HIV intervention described by
Rosen et al. (2018) was designed to address the sexual risk behaviour of women prisoners
who had experienced interpersonal violence. A qualitative approach was used in order
to identify the attitudes, beliefs, and motivations of women – which included difficulty
trusting, poor self-esteem, and poor self-care – and then used this information to develop
an intervention designed to support women to make healthy choices. From their qualita-
tive study on women in Iran, Khalesi et al. (2016) identified a variety of factors under-
pinning sexual risk, including issues around stigma and power, specifically the relative
lack of power, including economic power, for women in sexual relationships with men.
However, there were additional factors too more specific to the setting, such as the role of
religion and fears that the legal system was not capable of protecting them against sexual
abuse. Addressing a more specific aspect of sexual health, Evans et al. (2016) conducted
a successful intervention designed to reduce HIV transmission by increasing the uptake
of HIV testing that was underpinned by a community-based participatory social mar-
keting design. The intervention was derived from evidence around social and structural
barriers to HIV testing that was qualitative in nature and suggested a lack of trust and
a fear of stigma, evidence that would have been extremely difficult to obtain quantita-
tively. Although each of these interventions was different, both in terms of their target
populations and their subsequent approaches, they were all underpinned by qualitative
research that allowed them to be tailored to precisely fit the needs of those that they sought
to help. Simply telling these groups that they should use condoms, or be tested for HIV,
because the epidemiological evidence demonstrated an objective benefit would not neces-
sarily have been sufficient to change their behaviours. This is because these behaviours
were also informed by structures, meanings, and interpretations that sat outside objective,
external ‘truths’, and occasionally in direct opposition to them. Similarly, the men in our
Thai study were well aware that they were supposed to use condoms, and in this sense
were by no means ignorant, they just did not want to and were able to rationalise their
way around the problem of STIs. This highlights the necessity of incorporating qualitative
research into practice. In terms of the highly personal, private, and often hidden world of
human sexuality, each different population that sits within the cross-hairs of a safer-sex
intervention, whether they be Western male sex tourists to Thailand or female prisoners
60 Enhancing Healthcare and Rehabilitation

in the United States, will be different, although the overarching problem of sexual risk
remains the same. Although an effective intervention may exist for one population, apply-
ing the same approach to a different population without really understanding and then
adapting that intervention risks setting oneself up for failure, unique characteristics of a
population, such as ethnicity, gender, age, language, or simply geography may change a
situation entirely.

Conclusion
It is clear that we cannot understand the extent and scope of the problem of sexual risk-
taking without good quantitative data, we need to know which populations are at risk and
whether things are getting better or worse. However, only qualitative approaches have
the power to get under the skin of the data, to explore the social worlds in which sexual
risk-taking takes place, and really understand what is going on, and why. Any interven-
tion aimed at tackling the problem of sexual risk taking, or arguably any other aspect of
human behaviour, without a complete understanding of the ways in which behaviours
and practices are constructed, understood, and performed risks being limited from the
outset. As a consequence, qualitative research has much to offer the study of sexual risk-
taking behaviour that can both complement quantitative approaches, as well as provide
unique insights into the complex world of human sexuality in order to develop and refine
future interventions. Ultimately, the devil is in the detail, and the detail, at least in terms
of human behaviour, is only truly revealed in the qualitative. Without a rich and thor-
ough understanding of those on the receiving end of our well-meaning health promotion
efforts, we may develop interventions that risk being ineffective because they were based
upon how we, rather than our target population, understand and engage with the world.
What is necessary going forward is closer cooperation between qualitative researchers and
practitioners across all aspects of health promotion programme design, implementation,
and evaluation. For researchers, this will better ensure that evidence is generated from the
specific setting of practice, for practitioners, it means that their practice will reflect the best
and most relevant evidence available, whilst the populations at risk have the opportunity
to benefit most of all.

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5
The Phenomenological Experience of Family
Caregiving following Traumatic Brain Injury

Charles Edmund Degeneffe

CONTENTS
Introduction ...................................................................................................................................65
Qualitative Research and Family Caregiving Following TBI ................................................. 67
Caregiver Quality of Life and Personal Development ............................................................ 71
Family Role Specific Experiences................................................................................................ 72
Opinions on Professional Services.............................................................................................. 73
Research and Policy Implications ............................................................................................... 74
Conclusion ..................................................................................................................................... 75
References ...................................................................................................................................... 76

Introduction
A brain injury refers to damage to the brain occurring after birth and is not the result of
congenital, degenerative, hereditary, or birth trauma aetiologies. Clinicians and researchers
characterise brain injuries with the term ‘acquired brain injury’ (ABI), which includes both
traumatic and non-traumatic forms of brain injury. A traumatic brain injury (TBI) refers
to injuries caused by an external force to the head, such as gun-shot wounds or impro-
vised explosive devices, whilst non-traumatic forms of injury can be due to non-traumatic
causes such as strokes and drug overdoses (Brain Injury Association of America, 2018a).
TBI is a pervasive disability throughout the world, resulting for many in life-long disability,
employment restrictions, and reliance on caregivers to manage daily living needs.
Several national ABI advocacy organisations document the high numbers of citizens
incurring ABI through reviews of available data sources in their respective countries. In the
United Kingdom, Headway (2018) noted there were 348,934 ABI-related hospital admissions
in 2013–2014, a 10% increase from 2005 to 2006. Brain Injury Australia (2016) highlighted
the fact that three out of the four of the over 700,000 Australian citizens with ABI-related
activity limitations and participation restrictions are under the age of 65 years. Brain Injury
Canada (n.d.) indicated 160,000 Canadians experience ABI annually, with over a million liv-
ing with life-long impairments associated with ABI. In the United States, the Brain Injury
Association of America (2018b) reported over 3.5 million persons incur ABI each year, with
1 in 60 of those injured each year living with a TBI-related functional impairment.
On a long-term basis, many persons with TBI are able to recover sufficiently to be
able to work, live independently, and re-engage with many of their pre-injury activities.

65
66 Enhancing Healthcare and Rehabilitation

However, those with more severe levels of TBI-related disability need assistance from care-
givers to meet daily support needs. Because of limited funding and insufficient services
in the United States and other parts of the world, this responsibility often falls to family
caregivers (Degeneffe & Lee, 2015). TBI can result in a variety of physical, psychological,
and cognitive changes that can result in life-long and at times pervasive support needs.
Family caregiving can range from limited support to around the clock responsibilities,
attending to all of the injured family member’s needs. In recognition of the magnitude
of this responsibility, the consequences of family caregiving have received considerable
and growing attention by TBI professionals and researchers over the past 20 to 30 years
primarily through quantitatively-based research.
Quantitative studies primarily focus on the negative aspects of caregiving. Several
examples are presented. In an early investigation, Allen, Linn, Gutierrez, and Willer (1994)
examined burdens experienced by 60 spouse and 71 parent caregivers of persons with TBI.
Using the Questionnaire on Resources and Stress-Short Form, both groups reported high
levels of caregiver burden. Kreutzer and associates (2009) examined depression, anxiety,
and somatic complaints amongst 273 family caregivers of persons with TBI supported by
six Traumatic Brain Injury Model System Center programs in the United States. As mea-
sured with the Brief Symptom Inventory-18, approximately one in five caregivers met the
criteria for clinically significant distress in each of these three domains. Norup and asso-
ciates (2015) examined needs endorsed by family caregivers in Mexico, Colombia, Spain,
Denmark, and Norway. Using the Family Needs Questionnaire, the greatest number of
needs across the collective sample related to health information about TBI, whilst the
greatest area of unmet needs related to emotional support.
Additionally, quantitative research advances professional understanding of com-
mon caregiver needs (Schaaf et al., 2013). It provides researchers the means to test
(e.g., Chronister & Chan, 2006) the applicability of caregiving theories and models to ABI
and develop instruments that best capture the ABI caregiver experience (e.g., Degeneffe,
Chan, Dunlap, Man, & Sung, 2011). In summary, quantitative research provides valuable
insights into the quality of life consequences of providing care and support to persons with
TBI. It increases professional recognition of the vital role that families hold for the long-
term care of their injured family members, providing motivation for the development of
policy and programs to alleviate caregiver distress.
Whilst the contributions of quantitative methods are clear, this form of research is limited
in understanding the subjectively experienced worlds of family caregivers. In TBI and other
rehabilitation populations, qualitative research offers scholars and clinicians the tools to under-
stand caregiving through a lens not possible in quantitative research. Qualitative research
advances contextual understanding (Tate, 2006) informed by factors such as race/ethnicity,
gender, social class, and country of origin. It offers researchers a means for better under-
standing reactions to the implementation of policies, interventions, and programs (Chwalisz,
Shah, & Hand, 2008). Qualitative research presents a means for understanding human
behaviour in naturalistic settings beyond the artificial parameters established in quantitative
studies (Hagner, 2010). Qualitative research gives study participants voice to shape public and
professional understanding based on life experiences and needs (Koch, Niesz, & McCarthy,
2014). Qualitative studies present a nuanced perspective that the disability experience reflects
a broad range of potentially negative as well as positive experiences.
In counselling and rehabilitation contexts, clinicians and researchers increasingly recog-
nise these positive aspects of qualitative methodologies as a systematic and scientifically
grounded approach to research. Also, qualitative research is recognised for its utility in
addressing the complex and idiosyncratic worlds of persons with disabilities and other
The Phenomenological Experience of Family Caregiving following Traumatic Brain Injury 67

client populations (Koch et al., 2014). Whilst the use of qualitative research continues to
expand, its presence pales in comparison to the use of quantitative studies. Berríos and
Lucca (2006) analysed all articles published in Counseling and Values, the Journal of Counseling
and Development, Professional School Counseling, and The Counseling Psychologist between 1997
and 2002. Only 98 of the 593 research-based articles published during this period were
qualitative. Hanley-Maxwell, Al Hano, and Skivington (2007) found that over a 30-year
period, only 23 studies published in Rehabilitation Counseling Bulletin employed qualitative
methods. Searching for qualitative research via the PsycINFO and MEDLINE databases
with the search terms ‘qualitative’ and ‘rehabilitation’, Chwalisz and associates (2008)
located only 151 studies using qualitative and 22 studies using mixed methods approaches.
Because of its limited use as a research approach, many clinicians and researchers do not
appreciate the value of qualitative research to understand the disability experience. This
lack of understanding extends to research addressing family caregiving and adjustment
following TBI. The purpose of this chapter is to review and evaluate the extant use of quali-
tative methods in TBI family research. By doing so, readers will gain an enhanced under-
standing of the unique and subjectively lived experiences of family caregivers of persons
with TBI. In the text that follows, three categories of qualitative studies will be reviewed by
identifying common issues and unique perspectives. A review of data collection strategies,
research sites, analytic strategies, and participants is provided. The chapter concludes by
offering recommendations for policy, clinical intervention, and future research.

Qualitative Research and Family Caregiving Following TBI

The review of qualitative research started with the goal of identifying all published
research in peer-reviewed journals only from the perspective of the family caregiver. In
TBI and ABI family caregiver research, there are several qualitative studies offering shared
perspectives from the family caregiver along with the injured family member (e.g., Willer,
Allen, Liss, & Miriam, 1991) and/or professionals (Gan, Gargaro, Brandys, Gerber, &
Boschen, 2010). Also, articles were limited to caregivers of persons with TBI, to not include
other forms of ABI such as strokes. Because impairments can differ (e.g., Zhang et al., 2016)
between those with TBI compared to persons with other forms of ABI, the focus on care-
giving was limited to TBI.
By focusing specifically on the family caregiver, the following review offers a phenom-
enological perspective specific to the experience of caregiving and adjustment following
TBI. Phenomenology refers to research that focuses on participant subjective experiences
and meaning (Patten, 2012) of events unique in nature (Creswell, 2007). In the context of
this chapter, providing care and support to an individual with TBI is offered as a lived
experience unlike any other form of caregiving.
The search for articles was guided by the use of multiple databases, within journal
searches, reviews of article reference sections, and the author’s knowledge of available
research. Databases included Communication Sciences and Disorders, EBSCO, PsycINFO,
SAGE, Web of Science, ERIC, PubMed, Education Full Text, Academic Search Premier, and
Social Services Abstracts. Multiple search terms were used that related broadly to ABI,
TBI, qualitative research, chronic disability, families, and family caregiving.
Tables 5.1 through 5.3 present a summary view of all identified studies, including
information on the study focus, participants, methodology, key findings, and authors.
68 Enhancing Healthcare and Rehabilitation

TABLE 5.1
Caregiver Quality of Life and Personal Development
Study Focus Participants Methods Key Findings Authors

Caregiver reactions 12 female family Semi-structured From the very Broodryk and
in the initial caregivers of interviews/ beginning, family Pretorius (2015)
recovery period persons with TBI thematic analysis caregivers need
following TBI in Western Cape, support,
South Africa education, and
training.
Military-related 45 caregivers of Focus groups/ The most common Carlozzi et al. (2016)
caregiver military-service frequency analysis concern was
health-related members or caregiver social
quality of life veterans with health.
TBI in Maryland,
Michigan
Tennessee, and
Washington,
United States
Caregiver 55 caregivers in Focus groups/ The most common Carlozzi et al. (2015)
health-related Michigan, New deductive and concern was
quality of life Jersey, and Texas, inductive analytic caregiver social
United States approach health.
Family system 277 adult siblings Open-ended survey TBI can both Degeneffe, Gagne,
changes of persons with question/constant compromise and and Tucker (2013)
TBI, with 80.5% comparative strengthen family
from the method of textual systems
Midwest part of analysis
the United States
Perceptions of 279 adult siblings Open-ended survey Siblings express Degeneffe and Lee
quality of life for of persons with question/ deeply felt and (2010)
family member TBI, with 80% grounded theory well-informed
with TBI from the views of the
Midwest part of quality of life for
the United States their injured
brothers and
sister.
Sibling life changes 272 adult siblings Open-ended survey TBI can result in Degeneffe and
of persons with question/ profound positive Olney (2010)
TBI from 23 U.S. grounded theory and negative life
states and one changes.
outside the
United States
Sibling experiences Eight adolescent McCracken’s The siblings’ lives Gill and Wells (2000)
of living with a or young adult long-interview are forever
brother or sister siblings of method/data changed.
with TBI persons with TBI analysis guided by
in Ontario, family system
Canada theory
Caregiving 15 primary Semi-structured Caregiving Ishikawa et al.
experiences of caregivers of interviews/ includes both (2011)
family caregivers persons with TBI Berelson method positive and
in Japan of content analysis negative
dimensions
(Continued)
The Phenomenological Experience of Family Caregiving following Traumatic Brain Injury 69

TABLE 5.1 (Continued)

Caregiver Quality of Life and Personal Development
Study Focus Participants Methods Key Findings Authors

Caregiver quality 52 caregivers in Focus groups/ Quality of life is Kratz et al. (2017)
of life Michigan, New thematic content determined by
Jersey, and Texas, analysis and role demands and
United States matrix analysis changes with
injured family
member.
Family member 11 close relatives Qualitative research Family members Jumisko, Lexell, and
meaning of living of persons with interviews/ are challenged by Soderberg (2007)
with someone moderate of phenomenological own emotional
with TBI severe TBI in hermeneutic reactions while
Sweden interpretation also showing
compassion for
the injured family
member.
Transition from the 10 family Semi-structure Caregivers wished Nalder et al. (2012)
hospital to the caregivers of interviews/ to move past the
community persons with TBI framework injury.
discharged from approach
7 to 12 months
after community
reentry
The maternal Seven mothers of Conducted three Each mother’s Wongvatunyu and
experience of young adults neutral open- experience was Porter (2008)
parenting a young with TBI, injured ended questions/ unique.
adult child with from 8 months to phenomenological
TBI 20 years data analysis
methods
Caregiver Nine family Three unstructured Caregivers are Whiffin, Ellis-Hill,
perceptions of caregivers from narrative agents of making Bailey, Jarrett, and
change in three families of interviews/Life change for Hutchinson (2017)
themselves and persons with TBI Thread Model themselves and
the injured family their injured
member family members

Participant geographical information is provided when specifically identified by authors.

Methods include the studies’ primary data collection and analytic strategy. A total of 22
studies were found, published from 1993 to 2017, with most studies (n = 18; 81.8%) published
since 2007. A majority of the studies (n = 13; 59.1%) employed individual interviews, whilst
other data collection approaches included open-ended survey responses (n = 5; 22.7%)
and focus groups (n = 4; 18.2%). Authors differed on the extent to which they identified
analytic strategies, but most described some form of thematic, content, grounded theory,
phenomenological, and/or constant comparative analysis. Specific countries participants
were drawn from included Australia, Canada, Japan, New Zealand, South Africa, Sweden,
the United Kingdom, and the United States. Most articles were published in nursing (n = 5;
22.7%) and brain injury (n = 5; 22.7%) journals.
In the introductory section of each article, authors described phenomenologically guided
motivations to provide readers an understanding of the family caregiving experience not
70 Enhancing Healthcare and Rehabilitation

TABLE 5.2
Family Role Specific Experiences
Study Focus Participants Methods Key Findings Authors

Parent’s Parents from 20 Semi-structured Parents cope with Carson (1993)

experience families with the interviews/ TBI through a
following TBI person with TBI grounded theory three-phrase
living with at least process of
one parent providing care,
fostering
independence, and
seeking stability
Sibling future 280 adult siblings of Open-ended survey The two most Degeneffe
concerns persons with TBI question/grounded common concerns and Olney
from 24 U.S. states theory were the future (2008)
and one outside the recovery their
United States injured siblings
would obtain and
their roles as
future caregivers
Marital Five male and five Two gender-specific Post-TBI marital Hammond
relationship female spouses of focus groups/ relationships can et al. (2011)
stability persons with TBI constructivist pull closer
approach to together or apart
grounded theory
Spouse/partner Four spouses/partners Two in-depth Decision-making is Knox et al.
decision-making of persons with severe interviews with each largely directed by (2015)
TBI in the Eastern participant/ the non-injured
states of Australia constructivist spouse
approach to
grounded theory

previously examined or poorly understood. Authors described how qualitative methods

gave families a voice not previously heard and took readers into the inner-world experi-
ences of caregiving. Consistent across many articles was the need to justify the use of qual-
itative methods instead of traditional quantitative methods. For example, Kratz, Brickell,
Lange, and Carlozzi (2017) argued:

Qualitative methodology is well-suited to examine the complex lived experiences and

perspectives of caregivers of individuals with TBI. In contrast to a quantitative approach
where the investigator determines what is important to study (e.g., anxiety, depression),
a qualitative approach allows the caregivers to describe and define what is important
in their lives.

The collective set of articles described in Tables 5.1 through 5.3 provide a greater under-
standing of the how and why of family caregiving beyond the what (i.e., outcomes) focused
on in most quantitative research. Studies were categorised by key findings into one of
three areas including: (a) caregiver quality of life and personal development, (b) family
role specific experiences, and (c) opinions on professional services. The following section
describes and summarises each section of research.
The Phenomenological Experience of Family Caregiving following Traumatic Brain Injury 71

TABLE 5.3
Opinions on Professional Services
Study Focus Participants Methods Key Findings Authors

Perceptions of the 267 adult Open-ended survey Professional and Degeneffe and
quality of siblings of question/constant service-system Bursnall (2015)
professional persons with comparison of support is largely
services TBI from 23 textual analysis inadequate
U.S. states and
one outside
the United
States
Perspectives on Eight primary Semi-structured Caregivers did not Smith and Smith
the service family interviews/content want to give up this (2000)
system caregivers of analysis using role but needed more
persons with NUD*IST support.
TBI in Canada
Responding to Six female Interviews guided by Family members had a Tam et al. (2015)
challenging relatives of three open-ended broader
behaviors persons with questions/thematic understanding of
TBI in analysis challenging behaviors
Melbourne, than professionals.
Australia
Experiences of 21 caregivers of Semi-structured Additional stress Wharewera-
caregivers of 15 children interviews/thematic occurred because of Mika et al.
young children who incurred analysis lack of information, (2016)
who incurred TBI TBI before difficulty in accessing
two years of services, and
age in inconsistent care.
Auckland,
New Zealand
Mothers’ Seven mothers Three in-depth The mothers continued Wonngvatunyu
experiences in of young interviews with each their rehabilitation and Porter
helping young adults with mother/descriptive efforts with their (2005)
adults with TBI TBI in phenomenological children even with
Missouri, method minimal support.
United States

Caregiver Quality of Life and Personal Development

Consistent with the majority of quantitative articles that focus on negative outcomes such
as stress, burden, and depression, most qualitative studies (n = 13; 59.1%) on family care-
giving after TBI examine the underlying reasons for these responses. Authors examined
these outcomes from multiple and interrelated perspectives, including caregiver quality of
life, changed relationships, and personal development. Participants described caregiving
and family response from a nuanced perspective that highlighted a range of negative to
positive experiences. Authors provided results-guided recommendations on needed pro-
fessional supports and interventions.
72 Enhancing Healthcare and Rehabilitation

With regard to quality of life, researchers provided insights into caregiver burden,
health, and perceptions of life satisfaction. A common thread across this area of research
concerns how caregiving limits the ability to attend to positive health-related behaviours.
For example, in two studies led by Carlozzi et al. (2015, 2016), family caregivers (parents,
spouses/partners, children, siblings) in focus group discussions indicated their social
health was most affected with regard to such areas as giving up careers, experiencing
family disruption, and not performing pre-injury family roles, such as child or spouse.
Through the development of a conceptual quality of life model developed by Carlozzi and
her colleagues, both studies also described the quality of life implications of caregiving with
regard to emotional, physical/medical, cognitive function, and feelings of loss outcomes.
Authors described how the relationship to the injured family member changed
following TBI. Several studies shared how family caregivers engaged in a grieving process
as they mourned the person they knew before TBI and learned new ways of understand-
ing their injured family member. For example, Gill and Wells (2000) shared how a sibling
could no longer socialise the same way with his brother with TBI:

I’ll say hello to him. Usually we have dinner together, but that’s about it. I hung out with
him a lot before his accident. We were close. It’s just a disappointment. I’m a lot closer
with his friends now. I should spend more time with him, but it’s hard to hang out with
someone who doesn’t do the same things you do. (p. 51)

In talking about their injured family members, caregivers conveyed deep emotions such
as guilt, anger, and sadness. For example, an adult sibling in a study by Degeneffe and Lee
(2010) commented on her brother’s limitations to live a happy and productive life:

He wants so badly to get a job, to meet someone and have a family, and to get his driver’s
license. He will never be able to get his driver’s license because of his behaviour and his
physical disabilities. I don’t know if he will ever find a job that works out, also because of his
behaviour. Who knows, he may meet someone one day, but right now, he is so lonely. (p. 32)

Different than the focus of most quantitative studies, several studies described the positive
dimensions of TBI. Caregivers discussed their ability to cope, draw on family and personal
strengths, and achieve insights into personal values and goals. For example, Ishikawa,
Suzuki, Okumiya, and Shimizu (2011) identified ways in which caregivers (parents and
wives) were able to facilitate the involvement of family and friends to provide caregiving
help. They also discussed how caregivers productively channelled energy into providing
peer support and advancing public understanding of TBI. Also, Degeneffe and Olney
(2010) described how adult siblings of persons with TBI experienced profound insights
regarding spirituality and the development of new life goals and personal values.

Family Role Specific Experiences

Four studies focused on roles, experiences, and concerns specific to the family member
type. These studies examined family caregiving processes and outcomes via perspectives
particular to each family role. The inference of these studies is that TBI affects family mem-
bers uniquely as a function of the nature of the relationship to the family member with TBI.
The Phenomenological Experience of Family Caregiving following Traumatic Brain Injury 73

From a parent perspective, Carson (1993) guided interviews amongst parents from
20 families of persons with TBI (aged 17 to 35 years) with the question (p. 166), ‘Tell me
about your experiences since your child returned to the home setting’. Carson described
how parents engaged in an intense process of providing care, reorganising their lives, fos-
tering independence for their children with TBI, and coping with stresses and demands.
Carson also discussed changes specific to the parental role, such as limited ability to
attend to the needs of their other children and re-evaluating future plans. For example, in
discussing retirement, one parent shared (p. 172), ‘I think we’re going to have a real differ-
ent retirement than a lot of people do. We’ve really never talk about her not being with us’.
Two studies examined spousal/partner relationships following TBI. Both studies high-
lighted changed roles, communication patterns, and post-injury relationship quality. In a
study of four spouses/partners of persons with TBI, Knox, Douglas, and Bigby (2015)
focused on decisions the non-injured spouse/partner makes on behalf of the injured
spouse/partner. Non-injured spouses/partners made almost all decisions for the family,
and the ability to make decisions was enhanced by attending to the quality of the
relationship, effective communication, and ability to see the injured person in a positive
light. Through two gender-specific focus groups, Hammond, Davis, Whiteside, Philbrick,
and Hirch (2011) examined relationship stability amongst 10 spouses of persons with TBI.
Wives and husbands differently viewed caregiving responsibilities. Spouses described a
variety of challenges with trust, communication, emotional attachment, changes with the
injured spouse, and relationships becoming closer or pulling apart.
A fourth study examined future concerns amongst adult siblings of persons with TBI.
Degeneffe and Olney (2008) asked (p. 240) a national sample of 280 adult siblings, ‘What
are your concerns regarding the future for your sibling with TBI?’ Siblings shared impas-
sioned concerns for the future health and welfare of their injured brothers and sisters.
Specific to their role as siblings, participants also conveyed deep concerns about future
caregiving responsibilities once parents were no longer able to serve in this role:

While my parents are my sister’s main caregivers, she will outlive them. As the only
sibling, I will have to care for her. Will she be able to live on her own 2,000 miles aware
from me? In addition to her, will there be other family members to take care of in later
years? (p. 245)

Opinions on Professional Services

The third research area (five studies) addressed the quality and availability of long-term
services following TBI. Studies ranged from 2000 to 2016 with participants living in
Australia, Canada, New Zealand, and the United States. Participants included mothers,
fathers, sisters, brothers, grandparents, and a spouse. Care recipients included those
injured before the age of 2 years through adolescence and then adulthood. Despite these
differences, the studies were consistent in noting the lack of long-term, community-based
supports to meet the demands of caregiving. In some cases, families were pleased with
professional services, however, more commonly participants felt professional services
were unavailable, inconsistent, ineffective, and/or not respectful of family views and
participation. Also, families were committed to providing long-term care, but at times felt
they were on their own in doing so.
74 Enhancing Healthcare and Rehabilitation

In one of the first studies focused on family caregiver views following TBI, Smith and
Smith (2000) interviewed eight primary family caregivers of persons with TBI in Canada
on their experiences navigating the service system. Care recipients resided in the commu-
nity and had lived with TBI from 2 to 9 years. Participants complained of doctors who only
conveyed negative information about their injured family member’s deficits and prognosis.
Participants experienced great difficulty navigating the service system and felt unprepared
for the home return of family members with TBI in responding to their emotional problems.
Participants lacked information about care decisions and often needed to advocate for the
best interests of their family members with TBI with healthcare and rehabilitation services.
Since the publication of Smith and Smith’s (2000) study, findings in the other four stud-
ies were in many ways consistent. Examples from the remaining studies are provided. In a
study of seven mothers of young adults with TBI in the United States, Wongvatunyu and
Porter (2005, p. 1068) shared how several participants felt doctors overly focused on the neg-
ative, ‘Don’t always listen to what the doctor tells you. They tell you the worst-case scenario’.
In their study of 267 adult siblings of persons with TBI in the United States, Degeneffe and
Bursnall (2015, p. 21) described struggles participants encountered in navigating the service
system and shared that some siblings ‘…found the process difficult because of confusing,
impersonal, and arbitrary approaches in service delivery’. Tam, McKay, Sloan, and Ponsford
(2015, p. 7) addressed how six female caregivers (four mothers, one spouse, and one sister)
responded to providing care to family members with TBI with challenging behaviours. Some
participants addressed the lack of respite to give them a break from the demands of care-
giving, ‘More help with out of home respite, definitely, which we don’t get. That would
help a hundred times’ (Mother). In their study of 21 caregivers (mothers, fathers, grandpar-
ents, and others) of children who incurred TBI before the age of two years in New Zealand,
Wharewera-Mika, Cooper, Kool, Pereira, and Kelly (2016, p. 275) discussed how partici-
pants were not prepared for the home return of their injured child. One participated shared,
‘We were overwhelmed with people for the first 6 months and then nothing (010)’.

Research and Policy Implications

The extant literature presenting family views on caregiving for a person with TBI yields impor-
tant implications to guide future research and policy. Three areas of focus were found in the
areas of: (a) caregiver quality of life and personal development, (b) family role specific experi-
ences, and (c) opinions on professional services. In comparison to studies examining family
caregiving following TBI from a quantitative perspective, only 22 studies utilised qualitative
methods. To illustrate this disparity, of the 3142 research articles published in Brain Injury
from 1987 (volume 1, issue 1) through 2018 (volume 32, issue 5), only three articles in the pres-
ent review were published. Also, in the Journal of Head Trauma Rehabilitation, only one article
in the present review was published amongst the 1,413 research articles published from 1986
(volume 1, issue 1) through 2018 (volume 32, issue 6). Clearly, researchers need to do more to
capture family voices to understand their unique perspectives and experiences following TBI.
Whilst the available research provides clinicians, researchers, and the public important
insights and information, there are many areas of the TBI family caregiver experience
not yet addressed. With the exception of Japan (Ishikawa et al., 2011) and South Africa
(Broodryk & Pretorius, 2015), most studies are based on the views on largely white par-
ticipants from affluent countries like Australia and the United States. Missing are the
The Phenomenological Experience of Family Caregiving following Traumatic Brain Injury 75

perspectives of family caregivers from countries in Latin America, Asia, and Africa, incor-
porating racial and ethnic populations holding different views towards caregiving based
on cultural norms, family structures, and economic status.
Qualitative research has not yet addressed the family experience in several areas of
emerging professional and public interest. With the massive and worldwide prevalence
of armed conflicts (Amnesty International, 2018), qualitative research is needed that gives
voice to the civilian and military service member/veteran family caregiver experience fol-
lowing TBI caused by bombs, gunfire, and improvised explosive devices. To date, only
one study in the present view (Carlozzi et al., 2016) focused on families of military service
members or veterans with TBI. Also, with growing awareness of the connection between
concussive and sub-concussive injuries with chronic traumatic encephalopathy (CTE)
due to participation in sports like American football, rugby, and boxing (Solomon and
Zuckerman, 2015), qualitative research is needed to generate insights into how families
adjust and adapt over time to the progressive nature of CTE. Finally, falls are the second
leading global cause of unintentional injury or death, with age being a primary risk factor
for falls (World Health Organization, 2018). In the United States, from 2009 to 2010, persons
over the 65 had the highest rate of TBI-related emergency department visits (Centers for
Disease Control and Prevention, 2016). Qualitative research could, for example, examine
how adult children adapt to meeting the needs of aging parents with TBI.
The articles in Table 5.3 found consensus across countries, family member types, and
time since the onset of TBI regarding the lack of availability and quality of long-term TBI
services and professionals. However, the potential of these studies to influence profes-
sional training, public policy, and service expenditures is little to none given the neglect
of this area in qualitative TBI family caregiver research. Researchers need to use qualita-
tive research to document the real costs of caregiving in an environment of insufficient
services and poor professional preparation. Hearing the stories and real-life experiences
of family caregivers can be more compelling to administrators, clinicians, policymakers,
politicians, and the general public than simply relying on statistics and quantitative data.
Studies reviewed in Tables 5.1 through 5.3 were published in brain injury, nursing, social
work, and rehabilitation journals. Qualitative research is needed beyond a human service
focus to extend to academic disciplines better able to explore the economic, cultural, and
policy implications of family caregiving following TBI, such as economics, anthropology,
sociology, disability studies, and public health. An expanded scholarly focus holds prom-
ise for influencing the development of public policies and expenditures designed to reduce
caregiver stress, develop targeted interventions, and maximise the quality of life for care-
givers and their family members with TBI.

Conclusion
Following TBI, families provide a range of care and support. This role provides families
a phenomenological experience unlike any other form of caregiving following disability
or chronic illness. Most research on families of persons with TBI examines outcomes
from a quantitative perspective. As reviewed in this chapter, qualitative research goes
beyond the limitations of quantitative methods by giving readers an insider perspec-
tive on the experiences, needs, and negative and positive changes that emerge from this
unique experience.
76 Enhancing Healthcare and Rehabilitation

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6
Using Interpretative Phenomenological Analysis to
Study Patient and Family Members’ Experiences
of a Mechanical Ventilation Weaning Unit

Craig D. Murray, Jo Jury, Victoria Molyneaux, Jane Simpson and David J. Wilde

CONTENTS
Introduction ................................................................................................................................... 79
Interpretative Phenomenological Analysis ...............................................................................80
Mechanical Ventilation and Weaning Unit ................................................................................ 81
Study Setting .................................................................................................................................. 82
Data Collection and Analysis ......................................................................................................83
Sampling and Participants ......................................................................................................83
Interview Procedure .....................................................................................................................84
Data Analysis .................................................................................................................................84
Findings ..........................................................................................................................................85
Being Different .......................................................................................................................... 85
The Unit as Both a Community and a Lonely Place ................................................................ 86
The Transition from Unit to Home ........................................................................................ 87
Healthcare Implications of the Study Findings ........................................................................ 88
Conclusion ..................................................................................................................................... 89
References ......................................................................................................................................90

Introduction
In this chapter, we set out a phenomenological approach to collecting and analysing quali-
tative data (that of interpretative phenomenological analysis, or IPA) and apply this in a
study of patient and family members’ experiences of a mechanical ventilation weaning
unit. We then consider how the findings of this study may inform healthcare and rehabili-
tation for this patient group. Our description and application of IPA here serves an illustra-
tive purpose for others interested in applying qualitative methods for similar purposes to
other healthcare settings.

79
80 Enhancing Healthcare and Rehabilitation

Interpretative Phenomenological Analysis

IPA was developed by Jonathan Smith (Smith, 2004, 2011; Smith & Osborn, 2008; Smith,
Flowers, & Larkin, 2009; Smith, Jarman, & Osborn, 1999) with the vision to return the study
of ‘lived experience’ to the centre ground of psychology research attention by cultivating a
phenomenology-based methodology that was inherently psychological in nature. IPA treats
language as disclosing participants’ being-in-the-world and the meanings of this for them.
It is an approach intended to explore how participants experience their world, and hence
enable an insider’s perspective of the topic under study.
IPA is principally phenomenological owing to the central importance it accords to the
lived experience of a particular phenomenon as it is perceived and understood by the
person concerned. The approach aims to capture the complexity inherent in individual
experience and make transparent the person’s sense making of that experience. Consequently,
there is no attempt in the presentation of the findings to produce objective statements of
‘truth’ about a phenomenon. Instead, an interpretative account is produced, comprised of
detailed expositions of participants’ understandings and meanings, and drawing out the
psychological entailments of these.
IPA acknowledges that achieving an understanding of another’s lifeworld is a delicate
and collaborative social enterprise between participant and researcher; as Smith et al.
(1999) note, access to a participant’s lifeworld, ‘…depends on and is complicated by the
researcher’s own conceptions… required in order to make sense of that other personal
world through a process of interpretative activity’ (pp. 218–219). Smith (2011) refers to this
process of the researcher trying to make sense of the participant trying to make sense of
their experience as a ‘double hermeneutic’.
In order to foreground the distinctive nature of personal experience, IPA takes an
idiographic approach to research (Smith, 2011) involving the painstaking, fine-grained
analysis of individual cases and seeking to illuminate the meaning and sense-making
of lived phenomena as divulged within personal narratives. Because of this, IPA studies
may focus on single case studies, where the commitment to idiography is most evident
in the detailed reporting of one person’s experience. However, it is more common for
IPA studies to involve a small number of participants, where concerns centre around
‘…the balance of convergence and divergence within the sample, not only presenting both
shared themes but also […] the particular way in which these themes play out for indi-
viduals’ (Smith, 2011, p. 10).
As already discussed, IPA is primarily a phenomenological methodology with an acute
emphasis on the psychological study of lived experience and how people make sense of
their experiences. Nonetheless, it also has links with more mainstream psychology in that
it recognises that inherent in the sense-making process there is a ‘…chain of connection
between people’s talk and their thinking and emotional state’ (Smith & Osborn, 2008,
p. 54). However, as one might expect when carrying out psychological research, this ‘chain
of connection’ is not straightforward – people often find it difficult to say what they mean,
finding it challenging to put into words complex feelings and thoughts. Accordingly, it
is incumbent on the researcher to draw out and interpret what people are thinking and
feeling from the data obtained. When engaging in this kind of interpretative activity, IPA
acknowledges that it is impossible to ‘get into the head’ of another human being and know
Interpretative Phenomenological Analysis and the Weaning Unit 81

their thoughts directly. Instead, the IPA researcher tries to develop a critically formed
viewpoint from which they can then try to understand what it is like to have a given
experience.
Given the close attention to detail and the intense idiographic nature of the approach
taken, IPA research necessitates the purposive recruitment of a small sample of people
who share a common experience and possibly other characteristics as well. Consequently,
IPA studies are typically conducted with small samples of 4–10 participants that form a
homogenous sample. Homogeneity can occur on a variety of levels. At the most funda-
mental level, participants in an IPA study are homogenous because they share an experi-
ence of a similar phenomenon. Other levels of homogeneity can apply to a given sample,
however, these parameters will vary according to the particular research question and
topic area (Smith, 2004). The analysis itself will pay concerted attention to the thorough
examination of each participant case in turn until a point is reached where ‘…some degree
of closure or gestalt has been achieved’ (Smith, 2004, p. 41) for each individual. Only then
will the researcher consider a cross-case analysis with a view to teasing out the convergen-
ces and divergences available within the data.
In terms of output, the proof of the idiographic focus of the analysis should be evident
in the writing up of the findings. A detailed, nuanced, and resonant account of the
participants’ lifeworlds and meaning-making of their experiences of a given phenom-
enon should be presented. Smith (2004) notes that a good quality IPA write-up should
aim to strike a balance between addressing the common elements that participants
as a sample experienced, whilst retaining the uniqueness of each participant in such
experiences.
As IPA has grown in stature and popularity, a variety of methods have been used
to collect the experientially rich data necessary to perform a suitable analysis: for
example, data have been culled from naturally occurring data sources existing on
the Internet such as web discussion/message forums (Mulveen & Hepworth, 2006);
through email interviews (Murray & Rhodes, 2005); diaries (Boserman, 2009); and focus
groups (Palmer, Larkin, de Visser, & Fadden, 2010). However, the most popular and
utilised method of data collection in the vast majority of IPA studies remains the semi-
structured interview.

Mechanical Ventilation and Weaning Unit

The study reported here used interpretative phenomenological analysis to examine expe-
riences of a mechanical ventilation unit. Mechanical ventilation (MV) is used when a
person is unable to breathe unaided, usually as a result of chronic illness such as heart
failure (Ayalon, 2007). Machinery delivers air to a person’s lungs, either invasively
through a tracheostomy or non-invasively, for example, via a sealed mask. The experience
of MV can be a short one, for most people removal of the ventilator causes little distress
or difficulty and is a quick process (Boles et al., 2007). However, up to 10% of users can
become physically or psychologically dependent on MV and therefore have to be weaned
from the equipment (Wise et al., 2011).
82 Enhancing Healthcare and Rehabilitation

Weaning can be difficult and complex (Henneman et al., 2002). Dependency can be seen
for a number of reasons, including lung disease, cardiac impairment, or psychosocial
and psychological factors (Arslanian-Engoren & Scott, 2003; Cook, Meade, & Perry, 2001;
NHS Modernisation Agency, 2001; Wunderlich, Perry, Lavin, & Katz, 1999). Greater under-
standing of the emotions that people experience during MV and the weaning process
has been derived from qualitative studies. In a systematic review of five qualitative stud-
ies (Jablonski, 1994; Jenny & Logan, 1996; Logan & Jenny, 1997; Mendel & Khan, 1980;
Wunderlich et al., 1999), Cook et al. (2001) highlighted the need to consider the emotions
of the person being weaned. They argued that the weaning process evoked feelings of
frustration, hopelessness, and fear.
Due to the range of difficulties and complications seen in weaning, it is important to have
a specialist multi-disciplinary team (MDT) around the person being weaned (Henneman
et al., 2002; Hoffman, Tasota, Zullo, Scharfenberg, & Donahoe, 2005). Specialist units can
be more financially viable than weaning on the ICU (e.g., Seneff, Wagner, Thompson,
Honeycutt, & Silver, 2000). The study described in this chapter is set within a specialist
weaning unit in the United Kingdom. The unit is made up of an MDT which includes
respiratory physicians with a special interest in weaning, nurses, physiotherapists,
occupational therapists, and psychologists.
Whereas previous research has highlighted the importance of psychological and psy-
chosocial aspects of MV and weaning, there is an absence of research on experiences
of a weaning unit taken from a psychological perspective. IPA, with its focus on lived
experience, meaning-making, and psychology, provides an appropriate, rigorous meth-
odological approach to study this topic. In addition, given the central role that family
members play in patients’ recovery – be it within the hospital whilst the inpatient is sedated
(Dreyer & Nortvedt, 2008), during the transition from hospital to home (Mustfa et al., 2006),
or caring for the person at home (Huang & Peng, 2010) – it is important to gain insight into
their experiences also (Happ et al., 2007).
Given the above considerations, the study presented here aimed to gain a better under-
standing of the experience of former patients and their family members who became
involved with a mechanical ventilation weaning unit. By interviewing discharged patients
and their significant others, the study aimed to develop healthcare professionals’ under-
standing of the lived experiences of these people as well as the psychological impact of
being involved with the unit.

Study Setting
The specialist weaning unit that is the focus of the current research was set up in the
United Kingdom and opened in early 2010. It was one of only two in the country at the
time of opening and provides specialist weaning care within a hospital setting. The unit
itself consists of four dedicated weaning beds within a ventilation ward. A MDT, which
includes respiratory physicians with a special interest in weaning, nurses, physiotherapists,
occupational therapists, and psychologists, staffs the unit.
This study aimed to gain a better understanding of the experience of former patients and
their significant others who become involved with the mechanical ventilation weaning unit.
Interpretative Phenomenological Analysis and the Weaning Unit 83

By interviewing people who had been discharged and their significant others, it aimed to
develop healthcare professionals’ understanding of the lived experiences of these people
as well as the psychological impact of being involved with the unit. It was a timely piece of
work because at the time of data collection, the weaning unit had just completed its second
year of operation, and therefore the research aimed to guide developing practices and pro-
cedures. It was also intended to be of benefit to other units already in operation or looking
to open up in the future. Additionally, the study could provide clinical implications for
those who carry out weaning within an ICU or similar setting, as it might guide the sup-
port provided to people who spend time there.

Data Collection and Analysis

Sampling and Participants
This study was approved by a National Health Service Research Ethics Committee
and the weaning unit’s National Health Service Research and Development office. All
participants gave informed consent to be interviewed and permission for their data
to be used in this study. The Ventilation Business Manager identified 21 people who
had undergone weaning at the unit, of which four were still inpatients. Of the 17 dis-
charged patients, five had died, or judged close to death by the Ventilation Business
Manager. This left 12 people who were invited to take part in this study. As part of this
invitation, patients were asked to identify a family member or a friend who had spent
time with them on the unit who might also wish to take part. All potential participants
were asked to express their interest to the research team directly either by email, post,
or telephone. As a result, seven people took part: three patients and their partners and
an additional family member (mother) of a patient who did not take part (see Table 6.1).
Thus, the sample size and composition comprised a small and relatively homogenous
group, as appropriate for IPA.

TABLE 6.1
Participant Pseudonyms and Relationship to Other Participants
Participant Pseudonym Status Relationship to Another Participant

Alan Former inpatient on weaning unit Partner of Bernice

Bernice Significant other (spouse) Partner of Alan
Carol Significant other (mother of Ian, former N/A
patient, who was not interviewed)
Dan Former inpatient on weaning unit Partner of Helen
Eddie Significant other (spouse) Partner of Fiona
Fiona Former inpatient on weaning unit Partner of Eddie
Helen Significant other (spouse) Partner of Dan
84 Enhancing Healthcare and Rehabilitation

TABLE 6.2
Example Topics and Prompt Questions from Interview Schedules
Example Topics for Person Who Had Been Weaned Example Topics for Significant Other

Expectations of the unit Experience of visiting the unit

(What did you expect from staff?) Experience of the weaning process (Were you there for
Psychological impact of being on the unit any this process?)
(How did you feel when you moved there? Psychological impact of having a loved one on the unit
Emotional support (Did this change at all?)
(Did you get any? Where did this come from?)

Interview Procedure
Semi-structured interviews were conducted and audio recorded in participants’ homes,
with interviews lasting between 33 minutes and 70 minutes each. The interview sched-
ule was developed by the research team, including the MDT within the weaning unit,
and was designed to let participants recount their experiences with as little direction as
possible (see Table 6.2). Example questions included ‘How did you feel when moved there
(the weaning unit)?’ and (in relation to discharge) ‘How was planning this managed?’

Data Analysis
There are many guides available on how to conduct IPA, discussing different levels of
analysis that may be attempted (Smith et al., 2009) and different ways of presenting IPA
findings. IPA is an epistemological and methodological approach that can tolerate some
variation in procedures and presentation (Smith & Osborn, 2008). For example, we focus
our own description of analysis here on identifying themes within and across transcripts.
To begin with, transcripts were read a number of times to increase the researcher’s level
of familiarity with the data. Each transcript was read to identify themes from a psycho-
logical perspective. Notations were made on parts of the text of relevance to the central
research focus (patients’ and their family members’ experiences of the mechanical venti-
lation weaning unit). This included summarising material, making connections between
passages and statements, and providing preliminary interpretations. Following this, the
fundamental substance of the text was recorded in the form of keywords and phrases
that captured the essence of these emergent themes. These keywords served as early plac-
ing or interpretative reflections on what was thought to be present in the text. Analysing
each transcript individually allowed the researchers to be open to new themes from each
participant, rather than being driven by themes from previous transcripts. Once this
process was completed for each transcript, a list of the emergent themes was collated so
that connections across the transcripts could be examined. Patterns across participants
were then explored, including commonalities and nuances within and between partici-
pants’ data. Related themes were grouped together and the final theme titling modified to
reflect the depth and breadth within and across accounts. This stage of analysis focused
Interpretative Phenomenological Analysis and the Weaning Unit 85

on producing a parsimonious and saturated account of the study data that resulted in
a three-theme narrative structure: being different; the unit as both a community and a
lonely place; and the transition from unit to home. Each of these themes is presented below
and illustrated using data excerpts from the interviews conducted.

Findings
Being Different
The weaning unit gave participants the opportunity to feel special or different in some
way. This unit is not a typical hospital ward and therefore does not operate in the same
way that more traditional wards might have to, where people are typically admitted not
based on choice, but based on physical need. Participants understood that the weaning
unit actively selected people who might benefit from the service it offered and tried to
make sense of this:

They felt that I was a suitable candidate to go to the unit. They wanted to try the system
on me and wean me off ventilation… They thought they could do something, there’s no
point in making someone who wasn’t going to do any good. I must have been fighting
the good fight and not giving up. (Alan)

Alan made sense of this decision as being about the personality of the individual, rather
than being based on a medical decision. To be chosen meant that the individual was
actively behaving in a particular way and this will cause them to have a good weaning
outcome, something that would be wasted on a person who was not going to be able to
make the most of the opportunity. Therefore, the responsibility for the success or failure
of weaning is partly put onto the individual rather than the medics, although some of this
responsibility does stay with the staff, who will be able to ‘do something’. Alan recognised
himself that he was ‘fighting the good fight’, therefore making him stand out from others
who might not be putting as much effort into recovering. This sense of feeling unique was
also discussed by Helen, who described how her husband, Dan, was seen as someone
special to the weaning unit doctors:

Cardiology had been, you know monitoring him closely, and they probably wanted him
to go onto the cardio ward, but they weren’t sure, are you with me, I think Dr. [name
omitted] had sort of like decided that wasn’t happening, and he was going his way. He
wanted him as sort of like a, a prodigy. (Helen)

Dan was seen as being special, and this resulted in a battle between different specialities
within the hospital, where Dan was wanted by both teams. However, although the doctors
might make the decision that someone is suitable to go onto the unit, the decision remains
a joint one, and people are given the option whether to accept or decline a place. In the fol-
lowing extract, Eddie is talking about his partner, a former patient on the unit:

They offered us the option of going to the Unit. And Dr. [name omitted] came, we said,
Fiona said yes, and Dr. [name omitted] came down to assess her, and was very glad to
accept her as a patient, with the objective of weaning her off the tracheostomy. (Eddie)
86 Enhancing Healthcare and Rehabilitation

This decision can be one that is made by both the person admitted to the unit and the
significant other, however, is ultimately up to the individual who is to be admitted.
Whilst there was a sense that this is a joint decision, it is actually the person admitted
to the unit who is in control of saying yes or no. This was something that was conveyed
by all participants except Carol – mother of a former patient – who showed that control
is not always something that the person admitted to the unit or the significant other
can keep:

So he did stay there on that ward [another ward in hospital] and then he had, he had a
respiratory arrest. Which then, he needed resuscitation really, which then forced the move
down to the [weaning] unit. So although we were relieved that he was going, it wasn’t
quite as straightforward as that, you know. It was more difficult. But when he actually went
down there, it was very clear that he needed to be somewhere other than a ward. (Carol)

These extracts show how the weaning unit was seen as somewhere different and, whether
they have control over the decision or not, being moved to the unit can bring positive emo-
tions and make a person feel special in some way.

The Unit as Both a Community and a Lonely Place

The unit was discussed as a special place throughout the interviews, and this was
expressed most clearly by the idea of the unit being like a community. It was portrayed
as different in this aspect to other hospital settings, despite being within a hospital
setting:

… being in the hospital, little more of a community feeling than a big block of wards.
Although having, because I wasn’t in a ward, luckily that felt a little bit special too in a
way… Didn’t think of it being as a, a general ward. (Fiona)

By thinking of the unit as being unlike a general ward, the idea of feeling special was
maintained, and removed from the hospital setting in which it was surrounded. This
sense of community led Fiona to feel a bond with the other people on the unit, who were
going through similar experiences:

We all became, you know, not friends as such but we got to know each other, have a
laugh about each other’s’ masks and stuff, and helped each other as we got stronger, to
go to the loo and stuff. (Fiona)

This bond meant that emotional support could be offered, sometimes through the more
practical care that staff would otherwise provide. There was a sense of the people on
the unit getting better together, and this instilled a sense of group cohesion. However,
Fiona made the clear distinction between this bond and friendship, these people are not
close to her, but rather a temporary support structure that will give and take help where
needed.
As continuing support was often needed, participants still felt part of the unit. Several
participants spoke about revisiting the unit once they had been discharged, and two spoke
Interpretative Phenomenological Analysis and the Weaning Unit 87

about going back to give gifts of appreciation. Hence, the sense of community and support
continued even after people left the unit:

People were coming and visiting… who had been in… they’d just come visiting and say,
I need a mask, or I need a whatever, or breathing was a bit out last night, and they’d
either say to them I’ll get you a mask or, let’s have a, we’ll keep you overnight and have
a look you know. I just thought that was amazing. (Helen)

The unit was perceived as a calm, supportive, and ‘good’ place to be:

I actually feel very comfortable going there cos you know there’s such a good, such a
good place. You feel good. (Eddie)

Conversely, there were times when this sense of community and support dissipated. The
term ‘lonely’ was used a lot throughout the data set and encapsulated a time for those on
the unit when significant others were not around:

I realised it was lonely. And also in a small, in a room on your own like that. … I found
I couldn’t concentrate. (Alan)

Alan’s sense of isolation and loneliness was also recognised by his partner, Bernice:

He was lonely… And when he was getting a lot of constant care, it was ok because there
was somebody there, but when he was getting better, there wasn’t anybody there, and
he would have to ring for attention if he needed it you know, and he was lonely then.
(Bernice)

The Transition from Unit to Home

Contrary to the experience of having a choice to move to the unit, leaving was something
that was out of participants’ control, and at times fraught with battles, leaving participants
unsure about when they or their loved one could leave:

Then they said, ‘Well if everything’s ok, you can go home Thursday’. … And then
I would think, oh great, Thursday. Thursday night, guaranteed, the physiotherapist
would be on because I’ve not been able to get my breath. So another week, and then
eventually, they said, I could go home…I got out of there. (Fiona)

Therefore, for some people on the unit, a discharge date could be given tentatively, how-
ever, as the person’s physical status could vary, this might change, meaning that people
had to wait to be re-assessed. Fiona described the delay as being due to her physical
condition, as she was not able to get her breath, and it remained something outside of
her control. Being out of control was something that other participants felt, none more
so than Carol, who described having a difficult battle to get her son discharged from
the unit.

When somebody needs to come out to the community with a tracheostomy and, use of
the ventilator and other pieces of equipment, it’s a very long process. It’s just a very dif-
ficult time so we just, we were just playing a kind of waiting game. (Carol)
88 Enhancing Healthcare and Rehabilitation

Carol’s son had not been weaned from his tracheostomy, and this along with other com-
plicated health difficulties meant that discharge was not as simple as getting oxygen levels
to an acceptable standard. For Carol, this was a battle she had to fight, and she found that
they were waiting, not because of the unit, but because of other agencies that needed to be
co-ordinated: ‘I think the unit staff are, it, it’s out of their hands’ (Carol). Processes like this
could be difficult for the significant other as they are keen to have their loved one back home,
and therefore they can experience the same frustration as the person who has been admitted.
There was a sense of hope in recognising that people did find their way out of the
weaning unit, and progress towards this could be seen by moving from a tracheostomy
to non-invasive ventilation. Similarly to other participants, Eddie portrayed the discharge
process as having delays and ‘diversions’, but these were minimised as the hope for an
exit was placed as paramount importance. All participants spoke about the transition to
getting home, and although adjusting to life after the unit was seen as difficult, only one
participant described the difficult emotions he felt over leaving the unit:

… there was a fear of coming home, you know because I’d been there and maybe, maybe
because I was in a comfort zone, and you knew if anything went wrong they were there
you know, and I was coming home here and I’d have to get up the stairs and, stuff like
that you know. (Dan)

Dan became safe at the unit and did not need to think about the care he would receive.
There was a fear that something would go wrong at home, although this was related to
practical issues rather than worries about his breathing. This worry was not limited to
people who had been admitted, and Carol, a significant other, was also worried about the
practicalities of managing without staff:

So we were then forced to be there, cos if we’d have brought him home, it would have
been very tricky cos one of us would have been up all night with him. (Carol)

Here, Carol describes feeling as though she had no choice but to remain in the unit, and
although she was fighting for her son to return home, she was aware of the difficulties this
transition would bring. Carol had the distinction that her son had not been weaned, unlike
all the other people who had been on the unit. This placed a pressure on her to continue
the level of care that would have been available when on the unit.
Although difficulties with the transition from the unit to home were recounted, one
participant summed up the feeling of eventually returning home after a long time away:
‘I was glad to be home. Free to do what I wanted’ (Fiona). There was a sense of relief and
of breaking free from the routine that was placed upon people at the unit. The transition to
home was a difficult one, but positive, as the person was back in their own surroundings
where they could regain a sense of control over their life.

Healthcare Implications of the Study Findings

The aim of this chapter was to present a particular qualitative approach suited to under-
standing lived experience, meaning-making, and the psychological responses of patients
(and their significant others) within a certain healthcare setting. We chose to illustrate
this via a study of a mechanical ventilation weaning unit, using the method of IPA.
Interpretative Phenomenological Analysis and the Weaning Unit 89

The aim of the study was to gain an understanding of the experiences of patients and fam-
ily members who had spent time on a mechanical ventilation weaning unit, with a view
to understanding psychological considerations. There are key implications for weaning
units, such as that drawn on in this research.
‘Being different’ was an experience highlighting participants’ feelings of being special
in some way. The unit actively selects people for admission. This led to a feeling amongst
people admitted that they were special and had something different about them which
meant they would be a good candidate. The feeling of being different and special by par-
ticipants could be used to shape how conversations are had prior to people being admitted
to the hospital. It was important for participants that they were offered a service over which
they had a choice whether to attend or not. Therefore, conversations with patients and fam-
ily about moving to the unit should revolve around what makes them a suitable candidate
and how they might be different to other people who would not be admitted to the unit.
The ability to be together during this difficult period was vital for patients and their
significant others, and the environment of the unit afforded both opportunities for com-
munity, but also times of isolation and loneliness. Being visited helped to prevent patients
from feeling low or depressed. When visitors left, people admitted to the unit relied on the
sense of community that the unit offered. The study also echoes previous research which
has identified the importance patients place on being able to rely on family members for
support (e.g., Arslanian-Engoren & Scott, 2003). The current study extends this work to
show how, by taking the importance of support on board and being flexible with visiting
hours, people are made to feel special and display resilience to low mood, anxiety, and
other psychological difficulties. Clearly, the features that supported community or added
to feelings of isolation and loneliness should be maximised and minimised, respectively,
as much as possible (e.g., flexible visiting, opportunities for patients to socialise, outpatient
care that maintains the continuity of care).
Contrary to other research (e.g. Arslanian-Engoren & Scott, 2003; Cook et al., 2001;
Wunderlich et al., 1999), no mention was made of psychological difficulties which impeded
the weaning process. However, participants did indicate they experienced psychological
difficulties at the time of transition from the unit to home. Both people who had been
admitted to the unit and their family members felt this distress. The process of going
home is a simple one, but for most it is long and difficult with considerable psychological
barriers. Therefore, the provision of psychological support would be of particular use here
in supporting both patients and family members in continuing their recovery at home, as
this transition period evokes particular and difficult emotions.

Conclusion
Within this chapter, we have presented the qualitative approach of interpretative phenom-
enological analysis and applied it to the setting of a mechanical ventilation weaning unit.
The study demonstrates how the application of qualitative research methods can be used
to guide and develop practices and procedures in healthcare delivery settings. Although
the present findings offer particular issues of consideration for specialist mechanical
ventilation weaning units and ICUs, our description and application of IPA here serves
an illustrative purpose for others interested in applying qualitative methods for similar
purposes to other healthcare settings.
90 Enhancing Healthcare and Rehabilitation

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7
Using Narrative Analysis to Study Coping
and Adjusting to Cardiothoracic Transplant

Craig D. Murray, Catherine Elson, Zoey Malpus and Stephen Weatherhead

CONTENTS
Introduction ................................................................................................................................... 93
Cardiothoracic Transplant and Psychological Challenges ...................................................... 93
Narrative Analysis ........................................................................................................................ 94
Data Collection and Analysis ...................................................................................................... 95
Sampling and Participants ...................................................................................................... 95
Recruitment and Interview Procedure .................................................................................. 96
Analysis ..................................................................................................................................... 96
Findings .......................................................................................................................................... 97
Chapter One: ‘I Felt in Limbo’: A Life Changed, Contracted, or on Hold ....................... 97
Chapter Two: ‘Balancing Between Life and Death’: Hoping for the Best whilst
Preparing for the Worst ........................................................................................................... 98
Chapter Three: ‘Your Personality Is Taken Away from You’: From Person to Patient ........99
Chapter Four: ‘It’s Not a Magic Cure’: Adapting Expectations ........................................ 99
Chapter Five: ‘It’s a Heavy Load on My Shoulders’: The Price of ‘The Gift’ ................ 100
Discussion .................................................................................................................................... 102
Conclusion ................................................................................................................................... 103
References .................................................................................................................................... 104

Introduction
In this chapter, we set out a qualitative approach to collecting and analysing qualitative
data (that of narrative analysis) and apply this in a study of coping and adjusting to cardio-
thoracic transplant. We then consider how the findings of this study may inform health-
care and rehabilitation for this patient group. Our description and application of narrative
analysis here serves an illustrative purpose for others interested in applying qualitative
methods for similar purposes to other healthcare settings.

Cardiothoracic Transplant and Psychological Challenges

The term ‘cardiothoracic transplant’ refers to the transplantation of the heart and/or
lung organs and is the final treatment option for those experiencing organ failures
(Hertz et al. 2002). In recent years, cardiomyopathy has become the most frequently cited
93
94 Enhancing Healthcare and Rehabilitation

reason for heart transplants (Stehlik et al. 2011). For lung transplant recipients, chronic
obstructive pulmonary disease, cystic fibrosis, and emphysema are the most common
reasons (Christie et al. 2012). Approximately 3500 lung transplants and 100 heart/lung
transplants are carried out worldwide each year (Christie et al. 2012), in addition to
4000 heart transplants (Stehlik et al. 2011). The international median survival rate for heart
transplant recipients is 10 years (Stehlik et al. 2011) and for lung transplant recipients it is
5 and 1/2 years (Christie et al. 2012).
The period of time that candidates spend on the transplant waiting list can be psycho-
logically challenging (Stukas et al. 1999). It is characterised by uncertainty as candidates
often experience worsening health and repeated hospital admissions until a suitable donor
organ is found (DiMartini et al. 2008). Candidates may experience both hope for the pos-
sibility of a successful outcome and fear of the upcoming surgery and its potential failure
(DiMartini et al. 2008). Thoughts of death are common during this stage and candidates
often experience feelings of guilt and shame due to assuming a connection between their
need for an organ and the death of donor (Sanner 2003).
During the immediate time period following transplantation, psychological difficulties,
including depression, anxiety, and post-traumatic stress disorder are common (Dew &
DiMartini 2005). Transplant recipients may feel a sense of disillusionment with the
realisation that one diminished health state has been exchanged for another (Dudley et al.
2007). They face an extensive post-transplant medication regime, with accompanying
side effects (Sadala & Stolf 2008). There is also the ever-present threat of acute and
chronic graft rejection, in addition to complications associated with immunosuppression,
such as diabetes and kidney failure (Dew & Dimartini 2005). Psychological difficulties
may be further exacerbated by the psychosocial challenges encountered by transplant
recipients. These include physical disability and body image difficulties (Engle 2001),
sexual dysfunction (Rainer et al. 2010), and a lack of coping strategies and social support
(Dew & DiMartini 2005).
It is clear from the above literature that undergoing a cardiothoracic transplant is a
difficult and demanding process for recipients and their families. To date, the emphasis
in quantitative research has largely been on post-transplant quality of life which focuses
on a return to activities of daily living (Hyland 1998). The data for quality of life stud-
ies are generally gathered using questionnaires, leaving little room for exploration of the
subjective experiences of the recipient (Joralemon & Fujinaga 1996). In contrast, there
is limited qualitative evidence regarding coping, adjustment, and the support needs of
transplant recipients, particularly in relation to receiving organs from a deceased donor
(Rainer et al. 2010). Such research has the potential to increase the understanding of
researchers and practitioners regarding the events and experiences in which transplant
recipients require support.

Narrative Analysis
Whilst qualitative methods in general can illuminate the above issues, researchers
have suggested that qualitative narrative research allows novel understandings to be
gleaned about an individual’s self-identity, perceptions of illness states, and healthcare
needs (McMahon et al. 2012). A narrative perspective posits that people tell stories as
Using Narrative Analysis to Study Coping and Adjusting to Cardiothoracic Transplant 95

a way of putting events in a temporal order and establishing meaning and coherence
to their changing life circumstances (Murray 2008). As discussed by McMahon et al.
(2012, p. 1124):

Narrative researchers propose that people are meaning-generating beings who are con-
tinually constructing their identities from building blocks available to them in their com-
mon culture, above and beyond their individual experience… Narratives or stories are
thought to be central in this process, providing the means by which people organise
actions and events in their lives, bringing a sense of meaning, coherence and continuity
to their wide ranging experiences… Therefore narrative approaches are concerned with
accessing the meaning within personal narratives and in doing so learning about the life-
world and personality of the narrator. … Furthermore, we are born into a storied world
in which we are exposed to a whole host of stories which capture our imagination and
impart shared wisdom in relation to acceptable behaviour, values and morality within
our culture… As such, the stories that we tell are connected to and limited by wider sto-
ries, or dominant narratives which reveal culturally shared meanings and expectations.

In relation to healthcare and rehabilitation, narrative approaches view the onset of illness,
especially chronic illness, as disrupting a person’s everyday life, challenging ‘taken for
granted’ assumptions and prompting a re-evaluation and re-formulation of the self (Bury
1982; Charmaz 1991; Frank 1995). Eliciting narratives of these experiences in research offers
a way in which this meaning-making process can be observed, whilst also disclosing how
the social context contributes to this (Murray 2008).
Narrative analysis is particularly well-suited for exploration of the trajectory cardio-
thoracic transplant recipients experience during the course of their illness and treat-
ment. For example, Flynn et al. (2013) employed this approach in relation to heart and
lung transplantation and intensive care unit delirium. Within a narrative approach,
events and occurrences are taken to be experientially configured into a temporal whole,
with a beginning, middle, and an end. A person’s experience of the present reciprocally
informs their understanding of both their past and their future. This theoretical and
analytical interest of narrative approaches makes them particularly suited, from a suite
of possible qualitative approaches, for the study of accounts of illness over an extended
period. Therefore, the present study takes a narrative approach seeking to understand
participants’ experiences of coping and adjusting to cardiothoracic transplant. In addi-
tion, the study detail presented here provides a guiding example for applying narrative
analysis to other healthcare and rehabilitation settings where the research objectives are
similar in scope.

Data Collection and Analysis

Sampling and Participants
In order to explore coping and adjusting to cardiothoracic transplant, eight participants who
had all undergone a heart (n = 6) or double lung transplant (n = 2) were recruited from two
outpatient cardiothoracic transplant services in the United Kingdom. Participants’ ages
ranged from 32 to 65 and consisted of six men and two women. The length of time post-
transplant ranged from 2 years to 20 years. Demographic information for participants is
summarised in Table 7.1.
96 Enhancing Healthcare and Rehabilitation

TABLE 7.1
Participant Demographic Details
Participant Length of Time on
Number and Type of Length of Time Waiting List for
Pseudonym Gender Age Transplant Since Transplant Transplant

1. Sally F 41 Heart 1 years 8 months 3 weeks

2. Simon M 56 Double lung 24 months 3 weeks
3. Dan M 62 Heart 10 years 11 months 3 months
4. John M 46 Double lung 6 years 9 months
5. Gerard M 65 Heart 20 years 1 week
6. Tim M 54 Heart 6 years 1 day
7. Peter M 51 Heart 3 years 7 months
8. Laura F 32 Heart 2 years 3 weeks
Whole M=6 Range = 32–65 Heart = 6 Range = 1 year Range = 1 day–9 months
sample F=2 Double lung = 2 8 months–20 years

Recruitment and Interview Procedure

The National Research Ethics Service and the Research and Development departments of
both National Health Service Trusts provided ethical approval. Participants were recruited
by responding to posters displayed within the premises of the cardiothoracic services over
a 4-week period (a sample pool n of approximately 66). Six participants chose to be inter-
viewed at the transplant service and two chose to be interviewed in their home. As is com-
mon in narrative research, a minimal interview schedule was used and was designed to
facilitate participants in recounting their story, in their own words. Each interview began
with the question ‘Can you tell me the story of your transplant, what it has meant to you
and how it fits in with the rest of your life?’ Whilst eliciting their story, additional prompt
questions were asked as needed in order to encourage participants to elaborate.
The interviews lasted between 60 minutes and 90 minutes. They were audio recorded
and transcribed verbatim. All personally identifiable information was removed, with
pseudonyms used in place of real names. A summary story was subsequently provided to
each participant so that they could provide any changes that they felt were needed. Three
participants requested minor changes.

Analysis
Narrative analysis distinguishes itself from other approaches by its focus on ‘particular
actors, in particular social places, at particular social times’ (Abbott 1992, p. 48). A num-
ber of key texts in the field of narrative analysis were drawn upon in order to inform
the present analysis (Andrews et al. 2008; Crossley 2000; Riessman 1993, 2008). The first
stage of the analysis process involved actively listening to the interview recordings and
noting down initial reactions and assumptions (McCormick 2004). Interviews were sub-
sequently transcribed verbatim and re-read several times in order to produce a summary
story for each participant. These stories summarised key events and characters, in addi-
tion to noting significant thoughts and emotions associated with the different stages of
the transplant experience. Once any changes suggested by participants had been incor-
porated into the summary stories, additional readings of each transcript were made.
Initially, attention was focused on the content (Hoshmand 2005) and the structure of the
Using Narrative Analysis to Study Coping and Adjusting to Cardiothoracic Transplant 97

narration (Riessman 2008). Each subsequent read of the transcript was concerned with
a different aspect of the narrative, such as metaphors and imagery (Lieblich et al. 1998),
tone (Crossley 2000), and character (which included significant others) (McCormick 2004).
Finally, individual accounts were synthesised together through a process of comparison
between stories, merging areas of commonality, and incorporation of elements of each
participant’s story that illuminated or extended that of other participants.

Findings
The narrative analysis of the interview transcripts is presented in the form of a
composite story, incorporating the stories of all eight participants. This story is made up
of five ‘chapters’, which reflect the way in which participants organised their stories of
transplantation. Each chapter is presented in turn: ‘A life changed, contracted or on hold’;
‘Hoping for the best whilst preparing for the worst’; ‘From person to patient’; ‘Adapting
expectations’; and ‘The price of the gift’.

Chapter One: ‘I Felt in Limbo’: A Life Changed, Contracted, or on Hold

This chapter was the starting point for all of the narratives, and the listener was orientated
to the period of time before the transplant when participants had begun to experience
organ failure. For some, the decline into chronic illness had been gradual, whereas for
others it had been very sudden. Nevertheless, as participants’ health deteriorated they
became increasingly incapacitated: ‘I couldn’t walk, I couldn’t breathe, I couldn’t do any-
thing’ (Peter), ‘it ends up being really difficult to breathe and it gets harder’ (Simon).
During this time, participants described searching for an answer to their physical ill-
health. Medical professionals were discussed as authoritative characters and often expe-
rienced as dismissive of their symptoms: ‘He looked at me and said you don’t look like
you’re dying do you?’ (Sally). Participants felt disempowered and there was a sense of
having to fight to get the right diagnosis: ‘I kept going to the doctors, they’d say there
was nothing up with me and so I kept going back and it turned out I had cardiomyopa-
thy’ (Peter).
Participants described feeling shocked when they learned that transplant was an option:
‘I’d never thought about it before, I knew I was getting weaker, but the thought of a trans-
plant never crossed my mind’ (Tim). Diagnosis brought with it the introduction of a bio-
medical narrative, in which physical symptoms were named and placed within a medical
discourse. There was an experience of choice having been taken away: ‘He asked me if I’d
like a transplant and then told me that if I didn’t have one I’d die’ (Dan). For some, feel-
ings of injustice were present: ‘I was angry because I don’t really drink and I don’t smoke
and I don’t do drugs, I almost felt like, why didn’t I just do the whole bloody lot’ (Sally).
This sense of unjustness could lead to a search for meaning regarding their organ failure:
‘I went through a stage of thinking, why not him and why me?’ (Gerard).
When describing their afflicted organ, participants used language reflecting their per-
ceptions of the damage that had occurred to their bodies as a result of chronic illness: ‘The
right side of my heart was useless and just hanging there’ (Laura); ‘My heart had blown
up, they think it was a virus and my heart had become scarred and wounded’ (Gerard).
The conversational pace that participants used when recounting this part of their story
98 Enhancing Healthcare and Rehabilitation

was fast and the language repetitive, reflecting the unrelenting nature of organ failure:
‘I continued to get worse and worse and worse’ (John); ‘I was getting weaker and weaker’
(Tim). The language used to describe the evaluation process highlighted the experienced
intrusiveness, unnaturalness, and depersonalisation of the evaluation process: ‘They were
prodding and cutting’ (Simon); ‘They poked around inside you, checked all your other
organs and bits were ok’ (Peter).
Within each of the narratives, there was a feeling that life had shrunk and contracted
around the individual: ‘My life became going to work, getting home, and going to bed
because I was so tired physically’ (Sally); ‘I was confined to the telly and the computer
and sleep, that’s all I would do’ (John). Living with a chronic illness meant losing a sense
of purpose in life and resulted in reluctant and distressing surrender of both social and
occupational roles: ‘I was absolutely devastated because it was the one thing I had left and
I loved my job’ (Sally); ‘I missed the everyday things; going to work and being able to pop
to the shops’ (Tim). The predictable routine and consistency of everyday life had been
disrupted and it was experienced as drastically altered from the way things once were:
‘I went from being completely fit to a cardiac cripple’ (Gerard). This language reflected the
devastating loss of functioning and level of disability that had occurred.
These interruptions to daily life resulted in the future being narrowed, leading partici-
pants to become focused on the immediate ‘here and now’. For participants, life was on
hold: ‘It was difficult because I couldn’t plan anything with my life, I felt in limbo’ (Laura).
There was, then, a sense that life had been slowed down and become dominated by the
monotonous routine of medication regimes and hospital appointments.

Chapter Two: ‘Balancing Between Life and Death’: Hoping

for the Best whilst Preparing for the Worst
Once listed for transplant, anxiety became an increasingly prominent feature of partici-
pants’ narratives: ‘I thought at best I’d be disabled and I was worried, really worried’ (Dan);
‘I’d started looking it up on the Internet, and it was even more terrifying’ (Laura). Central
to these anxieties were thoughts of death: ‘I really thought I was going to die’ (Sally);
‘I started to think that I might not survive’ (Peter). Dan recalled wondering ‘What it would
feel like to die’ and found it ‘impossible to stay positive’ when his life consisted of simply
‘lying in bed’. However, other participants found that denying the seriousness of their
illness was a protective strategy: ‘I don’t think I let the risks that I knew of come to the
surface whilst I was going through it’ (John).
The physical health of all of the participants had significantly deteriorated by this point
and they had begun to experience a feeling of being trapped by their ‘failing’ bodies:
‘It was like torture, sensory deprivation… a prisoner’s regime’ (Dan). There was a feeling
that life was not being lived, but rather, it was being endured: ‘I was so ill, I was existing in
my bedroom, I was sleeping there, eating, drinking there’ (Simon).
Participants described the paradoxical situation they found themselves in of hoping for
the best outcome, whilst preparing for the worst: ‘You’re balancing between life and death,
you could die or you could go on to have a revolutionary change of life for the best’ (John);
‘I wanted to live, I wanted to be well, but at the same time I wrote a will and thought about
what my funeral would be like’ (Dan). This period was experienced as desperately lonely
as participants found loved ones reluctant to discuss the possibility of their death: ‘I had
nobody to talk to; nobody wanted to hear that I thought I was going to die’ (Sally).
Within each of the narratives, receiving ‘the call’ that a suitable donor organ was available
was highly significant. For some, it represented the possibility of ‘brighter days ahead’ (Peter),
Using Narrative Analysis to Study Coping and Adjusting to Cardiothoracic Transplant 99

whilst others convinced themselves that it would be a ‘false alarm’ as a way to manage their
anxiety: ‘I kept saying, well it’s not going to happen anyway’ (Sally). The experience of shock
numbed other feelings: ‘I was like a zombie’ (Simon); ‘I think its panic and shock that takes
over, you’re not in the mood for emotion’ (John). This numbness lasted into the final moments
before going into theatre: ‘When they told me it was going to happen and I had twenty
minutes, it kicks in then’ (Sally); ‘All of a sudden, I was in theatre, totally terrified’ (Simon).
The language that participants used when narrating this part of their story exemplified how
momentous it was to be finally going ahead with their transplant: ‘I just couldn’t believe it,
it’s such an odd thing, it feels sort of like you hear of the First World War, going over the top,
sort of, here we go, let’s do it. It’s totally unreal’ (Dan).

Chapter Three: ‘Your Personality Is Taken Away from You’: From Person to Patient
After the transplant operation, a heightened awareness of mortality resulted in partici-
pants developing a feeling of being dependent on having medical professionals around
them: ‘I didn’t want to leave hospital, I got myself in a real state, thinking, this hurts and
that hurts’ (Sally); ‘I got this feeling of institutionalisation’ (Tim). This powerful prison
metaphor conveyed the feeling of being trapped and the lack of control that is experienced
during this stage of hospitalisation: ‘I wanted to just scream and shout… to get away but
you can’t, you’re stuck’ (Laura).
During this time in hospital after the transplant, participants had to adapt to the role of
a ‘patient’ who was dependent on others: ‘Your personality is taken away from you, you
go from being able to make all the decisions about your life to being treated as though you
can’t make any decisions for yourself, everything from your past is gone’ (Dan). Inherent
in Peter’s narrative, and seemingly at the core of his self-identity, was his desire to care
for others. However, in the immediate aftermath of the transplant he had been forced to
abandon this part of himself: ‘It was hard because I’d always had people relying on me and
now I was relying on other people to do everything’ (Peter). Laura highlighted her distress
at being physically unable to fulfil her central role as a parent: ‘I needed to be a mother to
him and I wasn’t able to… I felt like I was stopping him in some way from being a child’.
Participants described a loss of independence and increased sense of fragility: ‘I had to
learn to do everything again, I couldn’t walk, I couldn’t brush my teeth’ (John); ‘I felt like
an egg shell’ (Simon).
Throughout the transplant process, the medical professionals were perceived as
powerful figures who left participants feeling powerless: ‘Some of the nurses are very
directive as well, shout at you if you try to get out of bed or something, so you are in a
very powerless position’ (Dan). This perceived power imbalance was particularly marked
when participants were talking about the transplant doctors: ‘The consultants, you’re in
awe of them… I put them on a pedestal in a way, but I mean I’m just glad they kept me
alive’ (John). Participants also felt their emotional well-being was sometimes neglected:
‘Sometimes you can feel like it’s all about the figures and they haven’t really asked about
you, how you are… [but] their main aim is to keep you alive’ (Simon).

Chapter Four: ‘It’s Not a Magic Cure’: Adapting Expectations

Participants described the immense struggle of adapting to life as a transplant recipient.
They found their confidence had been knocked and found it difficult to regain a sense of
autonomy: ‘When I first got home I felt really nervous, quite vulnerable’ (Tim). This seemed
to be especially apparent in those who had become ill quite suddenly: ‘I always used to be
100 Enhancing Healthcare and Rehabilitation

quite confident, but I think it was because I was suddenly for no apparent reason really ill,
it was a big shock when I was in the realms of what might happen next’ (Dan).
Participants lost faith in their own health and normal physical functions, becoming sen-
sitive to physical symptoms which could be indicative of rejection: ‘So every time I pick up
a bug, every time, I think, is this it?’ (Laura). This increased vigilance was rooted in fear of
returning to the life lived just before the transplant: ‘I couldn’t stand for my lungs to start
packing up, rejecting, I can’t imagine myself being back there, not being able to breathe
and being on morphine, I’m not doing that so I try not to dwell on it’ (Simon).
For some, it was difficult to adjust to being at home: ‘Psychologically I suppose it was a
shock. I relate it to the First World War, the extreme conditions of being at war and then
the veterans come home and it is hard to get used to at first’ (Dan). This combat meta-
phor characterised participants’ experiences both before the transplant and during their
recovery: ‘You feel like you’re losing [the] battle’ (Peter). It reflected ‘the fight’ that trans-
plant recipients faced, both for their life and for the survival of their identity: ‘I’ve known
what it is to be on the edge of losing something… like my life’ (Laura).
There was a feeling that friends and family did not fully appreciate the implications of
being a transplant recipient. The invisibility of the struggles of daily living post-transplant
left some with a feeling of anger and frustration: ‘People think that once you’ve had the
transplant, that’s it, you’re totally fine, back to normal’ (Sally). Some found it a comfort to
go back to the transplant unit because they felt safe and understood: ‘If they’d have asked
me to come in every week then I would’ve done quite happily, it was like getting this reas-
surance that everything was ok’ (Simon).
A successful transplant carried with it the implication of finality, of the end of a life of
chronic illness and the beginning of a new life. However, participants found that they
were still ‘patients’, with regular hospital appointments to attend and a lifetime of immune
suppressing medication: ‘So suddenly I’ve got this whole load of problems, all of that to
take on board, blood clots, all of that, it seems that as soon as you’ve sorted something,
something else goes wrong’ (Peter). Indeed, within each of the narratives there was an
acknowledgement that expectations had to be adapted to fit with the post-transplant
reality: ‘I thought, all of a sudden you’re going to spring back into life and everything
would be fine but, it’s not and you’ve just got to learn to accept that you’re never going to
get back what you had’ (Peter).
Alongside the struggle with their physical recovery, all participants experienced some
psychological difficulties post-transplant, for which there was a feeling of being unpre-
pared for: ‘They were brilliant with the medical side; rejection, preparing you for sur-
gery, but nobody ever addressed the psychological side, what was going to happen to you’
(Gerard).
Participants who had to give up their work as a result of their ill-health struggled to
assimilate their post-transplant selves to their pre-transplant selves:

Some days I don’t want to get out of bed, I wonder what my life is about because I think
beforehand I had such a sense of purpose… I had sport, a big circle of friends and then
suddenly it’s like, bang. (Sally)

Chapter Five: ‘It’s a Heavy Load on My Shoulders’: The Price of ‘The Gift’
As recovery post-transplant progressed, this composite story reflected participants’
thoughts about the organ donor and the donor’s family. When difficulties in recovery
were experienced a sense of obligation to their organ donor motivated participants to
Using Narrative Analysis to Study Coping and Adjusting to Cardiothoracic Transplant 101

persevere: ‘You’ve got to get yourself straight, someone has died and you’ve got their
lungs and it’s happened for a reason’ (John); ‘I think that’s what makes you take your
medication because your trying to look after yourself to make the most of your life, so
that person didn’t die for nothing’ (Sally).
The donor became a central character in each of the narratives and there was a sense that
the two lives had become inextricably linked: ‘It sounds daft, but last year I played quite
a lot of golf, I was getting out, I enjoyed myself. So sometimes I thought, “I wonder if he
enjoyed golf?” You know, he was out there with me’ (Simon); ‘I think about my donor every
day, in terms of what his life was like, what his family was like, what did he like doing, the
circumstances of how he passed away’ (John).
Feelings of guilt regarding the death of the donor were present across the narratives,
with participants equating their life with the donor’s death:

I still feel very guilty that someone had to die for me to live and I think that’s at the back
of your head… somebody else will have died so you can have it… (Sally)

Simon had been a smoker and he described his unresolved feelings of guilt with regards
to his chronic illness being ‘self-induced’: ‘There was a lot of guilt, like there were more
deserving cases and I don’t know what I did with that actually, I never dealt with that
so it’s probably still floating around somewhere’. Peter also had difficulty accepting that
he was deserving of the donor organ because he did not perceive himself as ‘ill enough’:
‘I don’t know, I just felt “why me?” I didn’t deserve it. Somebody else should have had it’.
Participants expressed strong feelings of gratitude towards the donor. When thoughts
turned to expressing this thanks to the donor’s family, some struggled to put the enormity
of their gratefulness into words: ‘I’m incredibly grateful… and there may come a day when
I know what to say and I will write, but at the moment, I don’t’ (Simon). Peter, on the other
hand, had wanted to write a thank you letter, but ‘the co-ordinator wouldn’t let me because
I was in and out of hospital all the time, she didn’t think it would be helpful for them to
know I wasn’t well’. Laura had written a letter to her donor’s family and when she did not
get a response from them she began to worry: ‘maybe they have regrets… and that trou-
bles me when I think of it like that’. Participants also spoke of a sense of societal pressure
and expectation to do ‘extraordinary things, like a marathon or a bungee jump’ (Laura),
and by not doing such things they felt they were ‘not making the most of things’ (Simon).
As this composite story concludes, the focus of the narratives turns to the future. For
participants, thoughts of the future were closely linked to thoughts of death. For Laura,
having a transplant had given her a feeling of living on ‘borrowed time’ and she felt the
‘future is inevitable’. Some found these thoughts threatening and difficult to reconcile:
‘From death never being on your mind to it occupying quite a lot of your thoughts, dying
is now the thing that scares me the most’ (Sally). Expectations and assumptions for the
future had been disrupted by the implications of being a transplant recipient. For Sally,
the life limiting nature of her condition had left her feeling alienated from other people
because she knew they did not understand her reality:

When I think about the future, I think about me not in it… it’s something that’s always
there, it torments me… I would say the mental side is harder than the physical side…
telling everyone you’re absolutely fine when actually, you just want to curl up and cry…

Peter struggled to come to terms with the reality of his physical capabilities following his
transplant: ‘They’ve told me that my health will never be what it was, they reckon I’ll need
102 Enhancing Healthcare and Rehabilitation

a mobility chair from now on… hopefully I’ll prove them wrong one day, you’ve just got to
cling onto it’. Laura described feeling changed as a result of her experiences and as such,
struggled to relate to others in the same way: ‘It’s like I’m looking in on a glass ball, like I’m
on the outside of a goldfish bowl and I’m looking in at everyone else’. Although Laura had
experienced a considerable amount of psychological distress throughout her transplant
journey, she also described some positive psychological change: ‘I’ve had an experience
that most people never have in a lifetime… I do think back to the person I used to be, but I
don’t wish to be that person’. The experience had left her ‘stronger as a person’ and able to
‘see things in a different perspective’ and ‘appreciate even the simplest of things’.

Discussion
This study explored the narratives of cardiothoracic transplant recipients through indi-
vidual stories of the transplant journey. Here, the findings are considered in relation to
how they might be addressed in service delivery.
The story threads through the initial stage of being diagnosed with a chronic illness, to
the transplant, and subsequent recovery. Participants’ struggle to locate a cause and assign
meaning to their symptoms was accompanied by diagnosis and a biomedical focus being
introduced to their narrative. The assessment process potential recipients undergo in order
to determine their suitability for transplant (e.g., to identify possible risk factors such as
pre-existing mental health difficulties; Dew et al. 2002) presents an opportunity at which
these issues could be addressed. It is common practice for candidates to be asked to com-
plete cardiac or pulmonary rehabilitation to optimise physical function. This study sug-
gests that it is also an opportune time to complete psychological interventions to improve
mood and resilience prior to transplant. Certainly the value of improving physical fitness
to reduce the length of post-transplant rehabilitation is well understood. This could also
be enhanced by emphasising the importance of building coping strategies and managing
expectations as part of a holistic rehabilitation plan.
Medical professionals were experienced as authoritative and powerful characters.
Attention could be given here to making the assessment process more participative in
order to empower patients and involve them in shared decision making. Perhaps involving
patients in this training programme would allow them to voice their shared experience
and increase understanding amongst medical professionals.
As participants’ trajectory through their transplant experience progressed, they found
themselves balanced between life and death as they waited and hoped for a donor organ to
become available. Candidates and their families, as well as the health professionals work-
ing with them, are often focused on continuing healthcare and the hope of a suitable donor
organ, so conversations about end of life issues may be neglected (Wright et al. 2007).
Whilst care teams will take great care to remind patients that donors were not dying so
that they would live, participants often experienced feelings of guilt and shame due to
assuming a connection between their need for an organ with the death of a potential donor
(Sanner 2003). During this time, participants felt unable to share their fears and anxieties
with those around them, such as family and friends, and felt unprepared and uninformed.
These experiences indicate the possible utility of an experienced transplant group who
could provide a much-needed source of social support and informational needs. A recent
critical review has also highlighted the role of social support in meeting the emotional
Using Narrative Analysis to Study Coping and Adjusting to Cardiothoracic Transplant 103

needs of transplant patients (Conway et al. 2013). This can be facilitated by pre-transplant
support groups, post-transplant patient led forums, and formal support systems where
recipient volunteers can offer support and advice to pre-transplant candidates. Given the
complex infection risks, the teams might consider how else to provide such support, for
example, via online discussion groups or through a booklet written by patients for patients.
Participants described a sense of disappointment upon the realisation that their trans-
plant had not offered a magic cure and that ongoing health problems persisted. Participants
discovered that they were in fact still ‘patients’ (Crowley-Matoka 2005). Expectations had
to be adapted to fit with the post-transplant reality, and they fought to regain their sense
of purpose in life. In some circumstances, this was a protective factor because avoidance
and denial are common strategies used to prevent individuals from feeling overwhelmed
or shocked by the prospect of a transplant (Mai 1986). However, for others, it was a crush-
ing disappointment not to be restored to their pre-deterioration self. Some recipients were
able to find a new meaning and purpose to their post- transplant lives, either by focusing
upon time with their family, or by caring for others. Transplant buddy networks are one
way recipients could be encouraged to repay the ‘gift of life’ and manage feelings of guilt.
For all participants, there was a sense that they felt unprepared for the psychological
impact and the realities of life following transplant surgery. Whilst such expectations could
be partly addressed in the ways indicated above (e.g., addressing informational needs in the
evaluative process or through contact with experienced transplant patients), some recipi-
ents may also benefit from psychological interventions, such as acceptance and commitment
therapy (Hayes et al. 2006). Acceptance and commitment therapy is premised on the idea
that, sometimes, helpful change can only take place when some aspects of the problem are
accepted as they are. Participants are thus encouraged to embrace an active willingness to
engage in meaningful activities in life despite experiences, thoughts, and other related feel-
ings that might otherwise hinder that engagement. Other third wave contextual approaches
may be equally useful, compassion focused therapy (Gilbert 2010) is particularly effective
for recipients who have a strong sense of guilt and shame regarding their donor and the
shame that their donor died to donate their organ so that they may live longer.
When the participants in this study were given the opportunity to share their experi-
ences of their transplant they were keen to do so and gave detailed and insightful nar-
ratives of their journey. The benefit of storytelling has been recognised in testimonial
psychotherapy (Lustig et al. 2004), which was developed for adults who have experienced
trauma over a sustained period and consists of the individual telling their story to a clini-
cian who subsequently creates a written document of the narrative at the end of therapy.
This process also enables the person to recognise the strength and resources they have
employed (Lustig et al. 2004). A similar model has been employed in the dignity therapy
model developed by Chochinov et al. (2005), a narrative approach to end of life care that
encourages people to share and make sense of their life story, resolving tensions, and pro-
viding a legacy to pass on after their death.

Conclusion
Within this chapter, we have presented the qualitative approach of narrative analysis and
applied it to coping and adjusting to cardiothoracic transplant. The journey of cardiotho-
racic transplantation is an ongoing process that is a lifetime challenge. The composite story
104 Enhancing Healthcare and Rehabilitation

presented illustrates the challenges that transplant recipients encounter. It is clear that it is
‘normal’ to be distressed at each stage of the transplant process. By investing in time and
resources to improving psychological care, the quality of the transplant experience may
be improved, and so too recipients’ psychological health. If recipients can be encouraged
and supported to find purpose and meaning in their post-transplant life, then they will
achieve better adjustment and well-being. Although the present findings offer particular
issues of consideration for cardiothoracic transplant services, our description and applica-
tion of narrative analysis here serves an illustrative purpose for others interested in apply-
ing narrative analysis for similar purposes to other healthcare settings.

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8
Qualitative Research and Osteoarthritis of the Knee

Nicholas F. Taylor, Samantha Bunzli, Jason A. Wallis and Nora Shields

CONTENTS
Brief Outline and Introduction.................................................................................................. 107
Methods ........................................................................................................................................ 108
Identification and Selection of Studies ................................................................................ 108
Data Extraction and Analysis ............................................................................................... 109
Results ........................................................................................................................................... 110
Methodological Approach of Included Studies ................................................................. 111
The Experience of Living with Knee Osteoarthritis .......................................................... 111
Overall Management ............................................................................................................. 115
Specific Management ........................................................................................................ 118
Exercise Interventions ....................................................................................................... 122
Total Knee Replacement Decision Making ......................................................................... 128
Discussion .................................................................................................................................... 135
References .................................................................................................................................... 136

Brief Outline and Introduction

Knee osteoarthritis is one of the most common chronic diseases (Pereira et al. 2011).
In 2015, 1 in 11 Australians (2.1 million) were estimated to have osteoarthritis (Australian
Institute of Health and Welfare 2015) with direct costs to the health system of over
$2 billion (Ackerman et al. 2016). Knee osteoarthritis, in particular, impacts the health sys-
tem with over 60,000 total knee replacements performed in Australia in 2016 (Australian
Orthopaedic Association National Joint Replacement Registry 2017). Lower limb osteoar-
thritis is also a major contributor to the burden of disease globally, ranked 11th out of 291
diseases according to years lived with disability (Cross et al. 2014), and is responsible for
reduced health-related quality of life (Abbott et al. 2017, Salaffi et al. 2005, Wilson and
Abbott 2018).
The main symptom associated with knee osteoarthritis is pain, with or without stiff-
ness and swelling around the joint. It is recommended that osteoarthritis is diagnosed
clinically without investigations if a person is over 45 years and has activity-related joint
pain and either no morning joint-related stiffness or morning stiffness that lasts no longer
than 30 minutes (National Institute for Health and Care Excellence 2014). People with knee
osteoarthritis often have difficulty with mobility and other everyday activities (Creamer
et al. 2000), which in turn can affect participation in work and leisure activities. As pain
has a central role in the experience of people living with knee osteoarthritis, qualitative
enquiry is particularly relevant. The experience and construct of pain associated with knee
osteoarthritis may be better explored with qualitative analysis than quantitative analysis.

107
108 Enhancing Healthcare and Rehabilitation

Clinical care standards emphasise the importance of embedding patient-centred care

principles in the management of patients with knee osteoarthritis (Australian Commission on
Safety and Quality in Health Care 2017). Patient-centred care for patients with knee osteoar-
thritis encourages patient participation in decision-making and communication with patients
about their management options. Qualitative analysis with its focus on exploring the views
and perceptions of participants is consistent with this principle of patient-centred care.
Qualitative analysis can also play an important complementary role to quantitative
methods in knee osteoarthritis research. In evaluating the effects of interventions using
quantitative methods, researchers are limited to a relatively small number of outcome
measures. Indeed, reporting guidelines for randomised controlled trials recommend
the choice of a single primary quantitative outcome (Schulz et al. 2010). Whilst such rec-
ommendations increase rigour and reduce bias, it does mean that potentially important
outcomes from an intervention may not be identified. Qualitative analysis as part of a
mixed-methods design (Creswell 2014), often using an inductive rather than a deductive
approach, can address this limitation of quantitative research. Similarly, qualitative meth-
ods can be useful as part of a process evaluation of an intervention, providing insights
into the reasons why an intervention was acceptable, adhered to, or why it did or didn’t
work (Moore et al. 2015).
This chapter will systematically review the literature on qualitative analysis of man-
agement of knee osteoarthritis. The review will include patient, caregiver, and clinician
perceptions on management. The aims of this chapter are: (1) to investigate the scope of
qualitative knee osteoarthritis research and (2) to explore how a qualitative approach can
provide insights into the management of knee osteoarthritis.

Methods
The review was reported consistent with the Enhancing Transparency in Reporting the
Synthesis of Qualitative Research (Tong et al. 2012).

Identification and Selection of Studies

Five electronic data bases (CINAHL, EMBASE, MEDLINE, PsycINFO, SPORTDiscus) were
searched from inception until April 2018. The search strategy comprised two key concepts:
knee osteoarthritis and qualitative research. For each concept, key words and Medical
Subject Headings (MeSH) terms were combined using the ‘OR’ operator, and the results
were combined using the ‘AND’ operator. An example of the search in one database can
be viewed in Table 8.1. The search results were downloaded into bibliographic software.
Reference lists of selected articles were manually searched for additional relevant articles.
Two reviewers independently reviewed the titles and abstracts yielded according to the
inclusion criteria (Table 8.2). If eligibility was uncertain based on title and abstract, a full
text version of the study was obtained. Studies reporting the perceptions of people with
knee osteoarthritis, their carers, or their clinicians were included. Studies of perceptions
on management and attitudes to living with knee osteoarthritis were included. Studies
that explored perceptions to perioperative management to the intervention of total knee
replacement were excluded. However, studies exploring attitudes about the decision to
proceed to total knee replacement were included.
Qualitative Research and Osteoarthritis of the Knee 109

TABLE 8.1
Search Strategy in Medline
Search

1. knee osteoarthritis mp or Osteoarthritis, Knee/

2. knee/
3. knee arthroplasty.mp or Arthroplasty, Replacement, Knee/
4. Knee joint/
5. (knee adj3 osteoarthritis).mp
6. qualitative research.mp or Qualitative Research/
7. qualitative analysis.mp
8. qualitative evaluation.mp
9. qualitative study.mp
10. 1 or 2 or 3 or 4 or 5
11. 6 or 7 or 8 or 9
12. 10 and 11

/ denotes MeSH term; mp denotes keyword.

TABLE 8.2
Inclusion Criteria
Inclusion Criteria Exclusion Criteria

Design and report Qualitative studies

• Full text article published in peer-reviewed • Questionnaires/surveys
journal • Non-English language
• Systematic review of qualitative research • Single case studies
Participants Knee osteoarthritis
• Perceptions of participants with knee • Participants not identified
osteoarthritis, their carers or their clinicians as having knee
• May include other conditions providing osteoarthritis (e.g. knee
perceptions about knee osteoarthritis are pain)
reported separately
Interventions No interventions required
• May include perceptions about interventions • Perceptions of peri-operative
for the management of knee osteoarthritis management of knee
replacement

Data Extraction and Analysis

Data were extracted from each study regarding participant age, sex, disease severity, body
mass index, and current management, where available. Data were also extracted on quali-
tative design including sample size, data collection (individual interview or focus group),
and qualitative framework informing the analysis.
Data analysis had two stages. The first stage involved coding studies to identify the area
of knee osteoarthritis qualitative research. Then, the codes were organised into themes
of enquiry. This process was completed independently by two reviewers. Reviewers read
and re-read text to develop codes to describe the type of qualitative enquiry of each study.
Codes were recorded with notes of definitions provided. A third reviewer was consulted
if consensus was not reached.
110 Enhancing Healthcare and Rehabilitation

The second stage of analysis involved a brief descriptive synthesis of each major theme
identified, thereby providing an overview of the breadth of qualitative research of knee
osteoarthritis. For each theme of enquiry, included studies were analysed by assigning
codes to the themes and subthemes reported in each study. Patterns of codes between
studies were then identified as themes. The descriptive synthesis was consistent with a
content analysis approach, with the number of studies supporting an identified theme
noted. Case studies of individual studies from two themes were highlighted.

Results
The search strategy yielded 680 articles. After title and abstract screening, 71 articles
remained for full text review, with good agreement between the reviewers (Kappa = 0.654,
95% CI 0.552–0.757). Fifteen articles were excluded after full text review resulting in a final
library of 56 articles (Figure 8.1).
The most common reasons for exclusion were that articles were abstracts, and the
results of knee osteoarthritis were not reported separately from arthritis at other sites.
The 56 articles reported the results of 49 qualitative studies and included 3 systematic
reviews.
Three themes of enquiry were identified: the experience of living with knee osteoarthri-
tis (12 articles from 9 studies); management of knee osteoarthritis (28 studies and 1 sys-
tematic review); and waiting for and deciding whether to have a total knee replacement
(13 articles from 12 studies and 2 systematic reviews). The theme ‘management of knee
osteoarthritis’ included the subthemes of: overall management; specific interventions; and
physical activity and exercise.

Records idenfied through Addional records idenfied

database searching through other sources
(n = 661) (n = 19)

Titles and abstracts Records excluded

screened (n = 609)

Full-text arcles Full-text arcles excluded (n = 15)

assessed for eligibility Abstract (n = 6)
(n = 71) Knee osteoarthris not reported
separately (n = 3)
Total knee replacement (n = 2)
Not qualitave (n = 2)
Final yield
Commentary (n=1)
Eligible arcles
Protocol (n = 1)
(n = 56)

FIGURE 8.1
Yield of studies.
Qualitative Research and Osteoarthritis of the Knee 111

Methodological Approach of Included Studies

The methodological frameworks among the studies included the Lazarus stress model,
constructive grounded theory, descriptive and interpretive phenomenology, framework
analysis and meta-ethnography. Data were most often collected via semi-structured
interviews, focus groups, or a combination of both, with structured field interviews
and patient diaries also included. Three studies systematically reviewed the literature.
Participant sampling was either convenience, purposive, or theoretical sampling. Data
were analysed in various ways including content analysis, thematic analysis, grounded
theory, constant comparative methods, or the van Kaam method of phenomenological
data analysis.

The Experience of Living with Knee Osteoarthritis

Twelve articles reporting data from nine studies described the experience of living with
knee osteoarthritis of 170 people (114 women; mean age 61 years, age range 25–87)
and 28 carers of people with osteoarthritis (13 women; mean age 48 years) (Table 8.3).
These studies were completed in Asia (n = 4), North America (n = 3), and Europe (n = 2)
and most were recently published (six studies of nine studies published since 2013).
Participants were diagnosed with knee osteoarthritis by a physician, rheumatologist, or
orthopaedic surgeon between 1 year and 10 years prior. Participants’ comorbidities as
described in five studies included diabetes, depression/anxiety, polyarthritis, hyperten-
sion, heart disease, haemophilia, silicosis, vascular problems, cancer, gout, and multiple
knee surgeries. Most people were symptomatic at the time of the study: participants in
four studies self-assessed their pain as mild to severe, and participants in three studies
reported functional limitations, including difficulties with squatting and limitations in
activities of daily living and sport and recreation, and reduced quality of life. Five stud-
ies provided details on participant employment status, all participants in three studies
were retired, and the majority of participants in two studies were employed at the time
of the study.
The studies explored the experience of living with knee osteoarthritis from the per-
spectives of the participants themselves (n = 7) and their caregivers (n = 1). One study
focused specifically on quality of life in people with knee osteoarthritis. The main themes
reported were: (1) perceived causes of knee osteoarthritis and prognosis; (2) pain expe-
rience and management; (3) functional impact of knee osteoarthritis; (4) social impact
of knee osteoarthritis; (5) emotional impact of knee osteoarthritis; (6) interactions with
health professionals; and (7) adjusting to knee osteoarthritis.
The perceived causes of knee osteoarthritis discussed in five studies (Chan and
Chan 2011, Hsu et al. 2015, Kao and Tsai 2012, 2014, MacKay et al. 2016, Pouli et al. 2014)
included internal factors such as being overweight, family history of osteoarthritis, age-
ing, working in occupations requiring extensive kneeling or lifting, past sporting activi-
ties, and menopause, and external factors such as trauma and the weather. Participants
perceived knee osteoarthritis as preventable or partially attributable to actions or inci-
dents that were modifiable (e.g. pushing too far or knee injury) had they changed their
behaviour earlier in life. Caregivers of people with knee osteoarthritis attributed the
cause of their relative’s knee osteoarthritis to ageing, working too hard, or to unknown
causes (Hsu et al. 2015). The prognosis of knee osteoarthritis was discussed by par-
ticipants in two studies (Clarke et al. 2014, MacKay et al. 2016). Participants believed
their symptoms would get worse over time, as knee osteoarthritis was ‘a progressive
 112

TABLE 8.3
Characteristics of Included Studies of Experiences of Living with Knee Osteoarthritis
Demographics Method:
(N, Age, Sex, Framework/
Study Country Population BMI) Analysis Sampling Data Collection Research Questions

Carmona- Spain Knee osteoarthritis N = 10 Content thematic Theoretical Individual Understand current
Teres et al. • Symptomatic Mean age 70 yrs, analysis based on interviews practice from
(2017) 70% women Lazarus stress • Semi- perspective of people
model categories structured with knee
osteoarthritis
Understand
experiences of people
with osteoarthritis
Chan Hong Kong Knee osteoarthritis N = 20 Grounded theory Convenience Individual Evaluate influence
and Chan • Mild to very Mean age 57 yrs, interviews of different pain
(2011) severe 65% women • Semi- patterns on quality
structured of life Investigate
coping strategies
Clarke et al. UK Knee osteoarthritis N = 24 Descriptive thematic Purposive Individual Explore participant’s
(2014) • Symptomatic Mean age 62 yrs, analysis interviews experience of living
Pouli et al. 71% women • Semi- with knee
(2014) structured osteoarthritis and
their beliefs about
knee osteoarthritis
and its treatment
Hsu et al. Taiwan Caregivers of people N = 28 Descriptive content Convenience Individual Explore primary
(2015) with knee Mean age 48 yrs, analysis interviews caregivers
osteoarthritis 46% women • Semi- perceptions of their
structured older relatives’ knee
osteoarthritis pain
and management
(Continued)
Enhancing Healthcare and Rehabilitation
TABLE 8.3 (Continued)
Characteristics of Included Studies of Experiences of Living with Knee Osteoarthritis
Demographics Method:
(N, Age, Sex, Framework/
Study Country Population BMI) Analysis Sampling Data Collection Research Questions

Keysor et al. USA Knee osteoarthritis N=4 van Kaam method of Purposive Individual Understand the
(1998) • Presence of Age range phenomenological interviews experience of living
functional 25–43 yrs, data analysis • Semi with osteoarthritis as
limitations 75% women structured young and middle-
(each aged adults
participant
interviewed
twice)
Kao and Taiwan Knee osteoarthritis N = 17 Constant Purposive Individual Understand the living
Tsai (2012, • Symptomatic Mean age 50 yrs, comparison interviews and illness experiences
2014) 82% women • Semi of middle-aged adults
Mean BMI 28.6 structured with early knee
osteoarthritis
Qualitative Research and Osteoarthritis of the Knee

MacKay Canada Knee osteoarthritis N = 51 Constructivist Purposive Focus groups Explore the meaning
et al. • Moderately Median age grounded Individual and perceived
(2014b, symptomatic 49 yrs, Theory/constant interviews consequences of knee
2016) 61% women comparative • Semi- symptoms
method structured
Maly and Canada Knee osteoarthritis N=3 Descriptive Convenience Individual Understand the
Krupa Age range phenomenology interviews experience of living
(2007) 62–87 yrs, • Semi with knee
67% women structured osteoarthritis in older
adults
Xie et al. Singapore Knee osteoarthritis N = 41 Grounded theory/ Purposive Focus groups Determine health-
(2006) • Symptomatic Mean age 64 yrs, Content analysis related quality of life
66% women domains affected by
knee osteoarthritis
Identify ethnic
variations in the
importance of these
domains
113
114 Enhancing Healthcare and Rehabilitation

degenerative disease’ and could not be ‘cured’. However, participants in one study
(MacKay et al. 2016) also felt they could halt or slow the progression of their symptoms
through diet and exercise.
Pain experience and management emerged as a theme in all nine studies. Pain was
described by participants as the predominant ‘omnipresent’ feature of knee osteoarthri-
tis. Pain was perceived to interrupt daily activities such as walking, to make people less
confident in their bodies, and to slow people down. Participants in one study described
two distinct patterns of pain: ‘mechanical’ pain described as ‘sharp’ pain related to
discrete movements or activities and ‘inflammatory’ pain described as a ‘burning’ pain
which was more unpredictable and associated with the weather or prolonged activity
(Chan and Chan 2011). Pain was perceived as insurmountable when there was no fore-
seeable end to it and made some participants feel ‘old’. Participants reported managing
their pain with medication, but that this was not always a satisfactory strategy due to
feelings of dependence, undesirable side effects, and only partial relief from symptoms.
Other pain management strategies described were activity-related (including exercise,
avoidance of certain activities, pacing, and ‘physiotherapy’), psychological-related (hav-
ing a positive life philosophy, humour, continuing to engage in pleasurable activities),
passive treatment modalities (ice, heat, massage, Chinese traditional medicine), and
weight loss.
Participants in all studies reported functional limitations due to their knee osteoarthri-
tis, particularly mobility restrictions. Participants predominantly reported limitations
in movements involving weight-bearing such as standing, stair climbing, squatting,
kneeling, bending; limitations in self-care activities such as dressing, toileting, sleeping,
cooking; or limitations in leisure pursuits such as walking, gardening, sport, and other
forms of exercise. Living with knee osteoarthritis was reported by participants to reduce
their physical activity, and to become sedentary. Participants described that the impact on
physical activities was associated with the severity of their knee osteoarthritis. The com-
bined impact of pain and functional limitations was an inability for some participants to
participate in paid employment, a reduction in work hours affecting household income, or
other impacts on work such as requiring modifications, tiring easily, or being less efficient.
For others, living with knee osteoarthritis meant a loss of independence.
Participants in five studies felt knee osteoarthritis had a substantial social impact (Chan
and Chan 2011, Keysor et al. 1998, MacKay et al. 2014b, Maly and Krupa 2007, Xie et al. 2006).
It reduced their ability to stay socially connected because of reduced participation in leisure
activities and because of difficulties with taking public transport. For some participants,
the inability to take part in socially based physical activity, such as walking with friends or
playing sport was the most difficult aspect of this condition. Participants described social
isolation marked by doing fewer activities outside of home. Participants felt mobility limi-
tations made them conspicuous to others that they had poor health which facilitated social
isolation. Living with knee osteoarthritis reduced their enjoyment of activities, particular
when travelling. Others described a change in their social relationships conveying that
they related more to older individuals with health problems. Participants also described
the repercussions of knee osteoarthritis on family life, including a need to stop looking
after their grandchildren or difficulties playing with their children.
Eight studies reported data on the emotional impact of osteoarthritis (Carmona-Teres
et al. 2017, Chan and Chan 2011, Hsu et al. 2015, Keysor et al. 1998, MacKay et al. 2014b, 2016,
Maly and Krupa 2007, Pouli et al. 2014, Xie et al. 2006). Living with knee osteoarthritis was
described as having a negative impact on mood, resulting in feelings of anxiety, irritability,
Qualitative Research and Osteoarthritis of the Knee 115

emotional distress, depression, and fear for the future. Some participants expressed that
their mobility limitations in particular devalued their sense of self-worth because mobil-
ity was integral to their identity and having knee osteoarthritis made them feel like ‘a
partial person’, or ‘less valuable’. Other participants talked of a reduced sense of control or
of being ‘lost’ after being ‘told’ to eliminate athletic activities and change their lifestyles.
Other participants reported grieving for activities they could no longer take part in, or
their vision of ageing. Participants in one study (Chan and Chan 2011) felt the unpredict-
ability and uncertainty of living with knee osteoarthritis caused the most stress.
Four studies explored the interactions of people with knee osteoarthritis with health
professionals (Carmona-Teres et al. 2017, Clarke et al. 2014, Kao and Tsai 2012, Keysor et al.
1998). Participants described the impact of their diagnosis as a positive step towards suc-
cessful management, although for people with low expectations of treatment, the impact
of diagnosis resulted in limited contact with health professionals. Participants who had
positive interactions with health professionals described being listened to, being offered
hope for the future, and being provided with recommendations for managing knee osteo-
arthritis including weight loss and exercise. Participants who had negative experiences
interacting with health professionals described their dissatisfaction with receiving lim-
ited information about treatment options available including behavioural management, a
sense of not being listened to, not being given sufficient attention, or not understanding
the information provided to them. For example, in one study (MacKay et al. 2016) partici-
pants recounted how their symptoms were viewed by health professionals as something
that could not be changed, which they ‘just had to live with’ or were dismissed as an inevi-
table part of ageing.
Eight studies (Carmona-Teres et al. 2017, Chan and Chan 2011, Clarke et al. 2014, Hsu
et al. 2015, Kao and Tsai 2014, Keysor et al. 1998, MacKay et al. 2014b, Maly and Krupa 2007)
reported participants’ descriptions of adjusting to having knee osteoarthritis in terms of
role changes or modifications, ownership of their health management, awareness of their
condition, and development of coping strategies. Participants described taking measures
to alleviate symptoms and protect their knee joint including lifestyle adjustments by keep-
ing active and controlling their weight, adapting their work, modifying activities or pos-
tures to manage everyday routines (e.g. climbing stair less frequently, not carrying heavy
things, planning ahead), and seeking out health-related information.
These findings provide important insights into the unique psychosocial factors that
characterise the experience of knee osteoarthritis. Some of these factors, for example,
emotional distress and the unpredictability of pain, have also been identified among
people with other chronic musculoskeletal conditions such as low back pain (Bunzli
et al. 2013). Other factors, for example, the perception that knee osteoarthritis is an inev-
itable part of ageing and the perceived absence of a cure, appear to be more unique
to the experience of living with knee osteoarthritis. By helping clinicians to better
understand the lived experience of knee osteoarthritis, these findings can optimise the
patient-clinician interaction, and may suggest potentially modifiable psychosocial tar-
gets for intervention.

Overall Management
Ten studies explored the perceptions of 392 participants with knee osteoarthritis and 62
health professionals (including 22 general practitioners, 14 orthopaedic surgeons and resi-
dents, and 8 physiotherapists) about management of knee osteoarthritis (Table 8.4).
 116

TABLE 8.4
Characteristics of Included Studies of Overall Management
Demographics Method:
(N, Age, Sex, Framework/
Study Country Population BMI) Intervention Analysis Sampling Data Collection Research Questions

Alami et al. France Knee N = 81 No intervention Descriptive Purposive Individual Explore views of
(2011) osteoarthritis 71% women, • Inductive interviews patients and health
Health N = 29: 11 general • Semi- professionals about
professionals practitioners, 4 structured management of knee
surgeons, 6 osteoarthritis
rheumatologists,
8 alternative
therapists
Egerton Australia Health N = 11 Telephone service Descriptive Purposive Individual Explore general
et al. (2017) professionals general to support • Inductive interviews practitioners
practitioners self-management • Semi-structured expectations to use a
• Not yet telephone service for
received patients with knee
osteoarthritis
Elwyn et al. UK Health N=6 A patient decision Descriptive Convenience Individual Explore reactions of
(2018) professionals Physiotherapists support tool • Inductive interviews health professional to
• Completed • Semi-structured using a patient
decision support tool
Kinsey et al. UK Knee N = 72 A patient decision Descriptive Purposive Individual Explore patients
(2017) osteoarthritis Man age 66 yrs support tool • Thematic interviews experiences of using a
60% women • Completed analysis • Semi- decision support tool
structured
Li et al. Canada Health N = 10 Load absorbing Descriptive Purposive Individual Perceptions on
(2013) professionals Orthopaedic implant interviews management of knee
surgeons and • Not yet Focus group osteoarthritis and
residents received opinion on implants
(Continued)
Enhancing Healthcare and Rehabilitation
TABLE 8.4 (Continued)
Characteristics of Included Studies of Overall Management
Demographics Method:
(N, Age, Sex, Framework/
Study Country Population BMI) Intervention Analysis Sampling Data Collection Research Questions

MacKay Canada Knee N = 41 No intervention Constructivist Purposive Focus groups Explore how people
et al. osteoarthritis Mean age 51 yrs, grounded theory with knee
(2014a) • Moderate 63% women • Constant osteoarthritis manage
comparison their symptoms
Morden UK Knee N = 22 Self-management Descriptive Purposive Individual Explore self-
et al. (2011) osteoarthritis Age range • Unstructured • Constant interviews management of knee
• Moderate 50–75+ yrs, comparison • Semi- osteoarthritis
to severe 59% women structured
Diaries
Qualitative Research and Osteoarthritis of the Knee

Prasanna Canada Knee N=5 No intervention Content analysis Convenience Focus groups Explore reasons for
et al. (2013) osteoarthritis Age >50 yrs delay in management
Health 60% women
professionals N = 6: Allied
health
Spitaels Belgium Knee N = 11 No intervention Content analysis Convenience Individual Explore patient
et al. (2017) osteoarthritis Mean age 66 yrs interviews perceptions of
64% women • Semi- guideline
structured recommendations
Tallon et al. UK Knee N=7 No intervention Content analysis Convenience Focus group Explore perception of
(2000) osteoarthritis treatment preferences
• Mild to
moderate
117
118 Enhancing Healthcare and Rehabilitation

The majority of participants with knee osteoarthritis were women over 50 years. Five stud-
ies did not include an intervention, but sought participants’ views on aspects of overall
knee management (Alami et al. 2011, MacKay et al. 2014a, Prasanna et al. 2013, Spitaels
et al. 2017, Tallon et al. 2000). Two studies explored experiences of participants and health
professionals in using a decision support tool (Elwyn et al. 2018, Kinsey et al. 2017), 1 study
explored the experiences of participants classified as providing self-management for their
condition (Morden et al. 2011), and two studies sought health professionals’ views on pro-
posed interventions of a telephone service to support behavioural change (Egerton et al.
2017) and a load absorbing implant for the knee (Li et al. 2013).
There were two main themes. One theme was about the perceptions of participants
with knee osteoarthritis and health professionals about interventions and management.
The other theme was about what participants and health professionals thought about
each other.
Both participants with knee osteoarthritis and health professionals agreed control-
ling symptoms, especially pain, and improving function were important treatment
goals (four studies). There was concerns expressed in three studies (MacKay et al. 2014a,
Morden et al. 2011, Tallon et al. 2000) about the over reliance on drugs to control pain.
Participants with knee osteoarthritis in three studies expressed the view that ‘active
management’, ‘carrying on regardless’, and making ‘adaptations to get on with life’ were
important in managing their condition. However, in contrast, participants in two stud-
ies with very small sample sizes (Prasanna et al. 2013, Spitaels et al. 2017) expressed
views that differed with guideline recommendations: ‘insisting on the need for imag-
ing’, ‘having a fear that physiotherapy may aggravate their condition’, and ‘perceiving
surgery as the only option’.
Participants with knee osteoarthritis and health professionals each had negative percep-
tions of the other group. Participants with knee osteoarthritis perceived health profes-
sionals communicated poorly (two studies), thought they were not seen as a priority by
health professionals, and that treatment was of little use in helping their condition (two
studies). Health professionals viewed that patients with knee osteoarthritis could have
unrealistic expectations (one study) and that it was difficult to explain treatment options
(one study). Health professionals in one study expressed the view of a need for a decision
aid to address the issue of communication (Alami et al. 2011). Experiences with a decision
aid tool were explored in two studies. Both participants with knee osteoarthritis (Kinsey
et al. 2017) and physiotherapists (Elwyn et al. 2018) expressed the view that the decision aid
tool aided communication and added value to management.

Specific Management
Nine studies explored the experiences of 293 participants receiving or delivering spe-
cific interventions or management for knee osteoarthritis (Table 8.5). The interventions
were varied. Six interventions were behavioural, including self-management, weight
loss management (two studies), a form of cognitive behavioural therapy, health promo-
tion, and the use of wearable technology. Three interventions could be considered pas-
sive involving a therapy being administered to a participant with knee osteoarthritis,
including massage, prolotherapy (injections), and moxibustion (application of burnt
mugwort to the skin). All studies explored the experiences of participants with knee
osteoarthritis, except one which explored the experiences of physiotherapists delivering
a cognitive behavioural therapy addressing pain coping skills for their patients with
TABLE 8.5
Characteristics of Included Studies of Specific Interventions
Demographics Method:
(N, Age, Sex, Framework/ Research
Study Country Population BMI) Intervention Analysis Sampling Data Collection Questions

Ali et al. USA Knee osteoarthritis N = 18 Massage Descriptive Purposive Individual Explore effects of
(2017) • Relatively Mean age 65 yrs, • 8 weeks Content analysis • Participation interviews massage
independent 78% women, • Weekly or in trial • Semi-
Mean BMI 33 biweekly structured
• Completed
Belsi et al. UK Knee osteoarthritis N = 21 Wearable Framework Convenience Focus groups Explore expected
(2016) • Receiving Age range technology analysis impact of
rehabilitation 45–65 yrs, • Not yet wearable
90% women received technology
Isla Peria Spain Knee osteoarthritis N = 10 Health education Phenomenology Purposive Focus group Explore meaning of
et al. (2016) Mean age 67 yrs, weight loss Thematic obesity and factors
Qualitative Research and Osteoarthritis of the Knee

80% women, program content associated with

Mean BMI 41 • Completed analysis weight loss or gain
Nielsen et al. Australia Physiotherapists N=8 Cognitive Framework Purposive Individual Explore therapists’
(2014) • Providing 90% women behaviour therapy analysis interviews experience with
therapy for • Pain coping • Semi pain coping skills
patients with skills therapy structured therapy
knee • 10 weekly
osteoarthritis sessions
• Completed
Ong et al. UK Knee osteoarthritis N = 22 Self-management Constant Purposive Individual Explore the
(2011) • Moderate to Age range • Ongoing comparison interviews meaning and
severe 50–75+ yrs, • in-depth enactment of
59% women Diaries self-management
in everyday life
(Continued)
119
 120

TABLE 8.5 (Continued)

Characteristics of Included Studies of Specific Interventions
Demographics Method:
(N, Age, Sex, Framework/ Research
Study Country Population BMI) Intervention Analysis Sampling Data Collection Questions

Rabago et al. USA Knee osteoarthritis N = 22 Prolotherapy Descriptive Purposive Individual Explore experiences
(2016) Mean age 57 yrs, • Hypertonic • Participation interviews of participants
22% women dextrose in trial • Semi- who received
injections structured prolotherapy
• 3–5 injections
over 17 weeks
• Completed
Toye et al. UK Knee osteoarthritis N=6 Weight loss Constructivist Convenience Individual Experience of
(2017) • Listed for total Age range management grounded interviews weight loss or gain
knee 59–76 yrs, • Unstructured theory • Flexible
replacement 100% men, guide
BMI range 31–38
Son et al. Korea Knee osteoarthritis N = 16 Moxibustion Content analysis Convenience Individual Explore experience
(2013) • Mild Age range • Application of • Participation interviews of moxibustion
40–69 yrs burnt dried in trial
69% women mugwort to skin
• 12 weeks, −x3
per week
• Completed
Victor et al. UK Knee osteoarthritis N = 170 Health promotion Content analysis Convenience Individual Explore meaning of
(2004) Mean age 63 yrs, • Nurse led • Participation interviews osteoarthritis for
73% women 4 × 1 hr groups in trial Group discussion those receiving
• Ongoing Diaries health promotion
Enhancing Healthcare and Rehabilitation
Qualitative Research and Osteoarthritis of the Knee 121

knee osteoarthritis (Nielsen et al. 2014). Participants with knee osteoarthritis were typi-
cally older, with increased body mass index (where this was reported), with a greater
proportion of women, with the exception of a study that explored the experiences of men
to weight loss management (Toye et al. 2017). The severity of knee osteoarthritis was not
well described; two studies included participants with moderate to severe knee osteoar-
thritis (Ong et al. 2011, Toye et al. 2017), and one study described participants as having
mild osteoarthritis (Son et al. 2013).
Themes were reported about the effect of the intervention, about practical issues
related to the implementation of the intervention, and about the personal experience of
living with knee osteoarthritis. There were very few common themes reported across
the nine studies.
The three studies reporting therapies administered to participants with knee osteoar-
thritis reported very positive results (Ali et al. 2017, Rabago et al. 2016, Son et al. 2013).
Reported improvements included quality of life (two studies), relaxation/comfort (two
studies), function (two studies), and reduced pain (one study). The four studies report-
ing the perceived effects of behavioural interventions reported neutral or negative find-
ings. Self-management was regarded by participants as ‘hard work’ (Ong et al. 2011).
Participants acknowledging the difficulty of losing weight expressed the view of ‘what’s
the point?’ (Toye et al. 2017). Less than half of participants enrolled in a health promotion
program were satisfied with their management (Victor et al. 2004).
Four studies reported themes about implementation. Despite their positive expe-
rience, participants who had received a massage intervention were concerned that
ongoing access to the intervention would be difficult due to cost (Ali et al. 2017).
Participants interviewed about the prospect of using wearable technology to help
their condition were concerned with practical issues about access and use of the
technology (Belsi et al. 2016). Training or pre-treatment counselling was valued by
physiotherapists delivering a form of cognitive behaviour therapy (Nielsen et al. 2014)
and by participants with knee osteoarthritis.
The third broad theme concerned participants’ experience of living with knee osteoar-
thritis whilst receiving their intervention. These personal experiences included: the expe-
rience of living with pain and the adjustments required to complete daily tasks (Ong et al.
2011). It also included the experience of living with obesity including negative societal
labelling, plus attitudes and knowledge about obesity for men such as not thinking that
they had to lose weight to be healthy (Toye et al. 2017). One study identified limited knowl-
edge about osteoarthritis (Victor et al. 2004).
The synthesis of data from the nine studies exploring specific interventions suggests
participants were more ambivalent about the benefits they received from behavioural
interventions than from therapies where they were the passive recipients. These results
were surprising, given theory suggests behavioural change should be important to
address the lifestyle factors that contribute to and exacerbate knee osteoarthritis, and
that some of the passive interventions studied are not recommended in clinical guide-
lines (McAlindon et al. 2014, National Institute for Health and Care Excellence 2014).
Participants may have more faith in interventions to fix or to ease their symptoms rather
than undertake the ‘hard work’, motivation, and commitment required to change behav-
iour. The negative attitudes and lack of knowledge demonstrated by participants in
some studies reinforce the importance of basing behaviour change approaches on estab-
lished theoretical frameworks, acknowledging stages of change, and utilising methods
to address ambivalence.
122 Enhancing Healthcare and Rehabilitation

Exercise Interventions
Six studies explored the perceptions of 95 participants (54% women) with knee osteo-
arthritis and 22 health professionals (18 physiotherapists) about their experiences after
participation in, or delivery of, exercise interventions (Table 8.6). Five studies included
physiotherapist-delivered exercise programs of between 8 weeks and 26 weeks duration as
part of the intervention arm of randomised controlled trials (Campbell et al. 2001, Hinman
et al. 2016, 2017, Lawford et al. 2018b, Wallis et al. 2017a). In one study, participants took part
in an exercise program although no specific details were provided (Thorstensson et al.
2006). Various exercise delivery methods were used including face to face home exercise
programs (two studies), telephone-delivered exercise (one study), Skype Internet technol-
ogy to enable physiotherapists to prescribe and supervise exercise programs (one study),
and a community-based walking program with supervised and unsupervised walking
sessions (one study). One systematic review summarised findings from primary qualita-
tive articles exploring people’s opinions and experiences with exercise programs (Hurley
et al. 2018). Two additional studies explored the perceptions of 49 participants (67% women)
with knee osteoarthritis about exercise and physical activity who were not involved in an
intervention (Gay et al. 2018, Hendry et al. 2006). One study explored the experiences of
eight physiotherapists trained to deliver a behavioural intervention for people with knee
osteoarthritis (Lawford et al. 2018a).
Participants with knee osteoarthritis in these studies were typically older, with a greater
proportion of women and with an average body mass index of at least 30 (where this was
reported). The severity of knee osteoarthritis based on either radiological or clinical find-
ings was described as mild to severe.
Three main themes were reported. These were: (1) the effects and experiences from par-
ticipation in, or delivery of exercise and behavioural interventions for patients with knee
osteoarthritis; (2) the experiences related to implementing and compliance with exercise
and behavioural interventions; and (3) people’s attitudes and beliefs about exercise and
physical activity who were not involved in an intervention.
Five studies described important positive effects of exercise and behavioural interventions
delivered by physiotherapists and telephone coaches (Hinman et al. 2016, 2017, Lawford
et al. 2018b, Thorstensson et al. 2006, Wallis et al. 2017a). Participants with knee osteoar-
thritis commented on the benefits of exercise such as ability to walk further, improved
knee strength, sense of well-being and increased participation in meaningful activities.
Physiotherapists’ commonly noticed improvements in strength and functional outcomes.
Five studies reported on the theme ‘experiences related to implementing and compli-
ance with exercise and behavioural interventions’ (Campbell et al. 2001, Hinman et al.
2016, 2017, Lawford et al. 2018b, Wallis et al. 2017a). Whilst the studies involved a range
of intervention settings (face-face, phone, Internet, and community), most participants
with knee osteoarthritis in the included studies valued support, information, supervi-
sion, and structure of exercise programs delivered by physiotherapists and telephone
coaches that helped with motivation and incorporating prescribed exercise into weekly
routines. Factors which enhanced compliance with exercises prescribed in the interven-
tions included the ability to exercise at home, positive exercise beliefs, experience of posi-
tive outcomes, and support from clinicians and coaches. Comorbidities, age, the weather
(for an outdoor exercise program), and negative beliefs about osteoarthritis reduced com-
pliance. Some participants reported dissatisfaction with the intervention if the exercises
were boring, if they had to travel long distances to perform interventions, and if the exer-
cises were not supervised.
TABLE 8.6
Characteristics of Included Studies of Exercise Interventions
Demographics Method:
(N, age, sex, Framework/ Data
Study Country Population BMI) Intervention Analysis Sampling Collection Research Questions

Campbell UK Knee osteoarthritis N = 20 Physiotherapy Inductive Convenience Individual To understand reasons

et al. (2001) Age range • Face to face delivered • Participation interviews for compliance or
40–70+ yrs, home exercise in RCT • In-depth non-compliance with
70% women program to strengthen home exercise
VMO, patella taping, program for people
advice, and with knee
information leaflets osteoarthritis
• 9 × 30 min sessions
over 8 weeks
Gay et al. France Knee osteoarthritis N = 20 No intervention Content analysis Convenience Individual Explore the
(2018) • Mild to (interviews) • Recruited interviews motivators for, and
moderate Mean age 67 yrs from Spa • Semi- barriers to, regular
symptoms 60% women Therapy structured physical activity in
Qualitative Research and Osteoarthritis of the Knee

N = 7 (focus Focus groups people with knee

groups) osteoarthritis
Mean age 69 yrs
86% women
Hendry et al. UK Knee osteoarthritis N = 22 No intervention Conceptual Convenience Individual Explore the views of
(2006) • Mild to severe Age range Framework • Recruited interviews primary care patients
symptoms 52–86 yrs from Focus Groups with knee
73% women General (N = 6) osteoarthritis
Practice towards exercise,
and explore factors
that determine
acceptability and
motivation to
exercise, and barriers
that limit its use

(Continued)
123
TABLE 8.6 (Continued)
124

Characteristics of Included Studies of Exercise Interventions

Demographics Method:
(N, age, sex, Framework/ Data
Study Country Population BMI) Intervention Analysis Sampling Collection Research Questions

Hinman Australia Knee osteoarthritis N=6 Physiotherapy Symbolic Convenience Individual Explore perceptions of
et al. (2016) • Mild to Mean age • Face to face delivered interactionism • Participation interviews participants,
moderate 62 yrs, home exercise Grounded theory in RCT • Semi physiotherapists and
symptoms 50% women program including structured telephone coaches
Physiotherapists N = 10 4–6 exercises engaged in an
• Mean 19 years’ 50% women performed 3 x week integrated program
experience Mean age 43 yrs • Advice to increase of physiotherapy and
Telephone coaches N=4 physical activity, and telephone coaching
• Two had prior 100% women information booklet for people with knee
experience Mean age 42 yrs about exercise, osteoarthritis
• 3 health physical activity, and
disciplines behaviour change
• 5 × 30 min sessions
over 26 weeks
Telephone coaching
• 6–12 calls over
26 weeks
• Mean duration
28 mins
• HealthChange
Australia model
Hinman Australia Knee osteoarthritis N = 12 Physiotherapy Donabedian Convenience Individual Explore the
et al. (2017) • Mild to 50% women • Skype delivered home framework • Participation interviews experiences of people
moderate Mean age 62 yrs exercise program Thematic and in RCT • Semi with knee
symptoms N=8 including 5–6 constant structured osteoarthritis and
Physiotherapists 50% women exercises performed comparative physiotherapists
• Mean 15 years’ Mean age 39 yrs 3 x week, analysis with using Skype for
experience • 7 Internet-based exercise management
Skype-delivered of knee osteoarthritis
sessions over
12 weeks
(Continued)
Enhancing Healthcare and Rehabilitation
TABLE 8.6 (Continued)
Characteristics of Included Studies of Exercise Interventions
Demographics Method:
(N, age, sex, Framework/ Data
Study Country Population BMI) Intervention Analysis Sampling Collection Research Questions

Hurley et al. – Knee (and hip) N = 12 studies Exercise-based Systematic review – – To people’s opinions
(2018) osteoarthritis rehabilitation programs of the literature and experiences of
including land-based or exercise-based
aquatic-based exercise programs (e.g. their
views,
understanding,
experiences and
beliefs about the
utility of exercise in
the management of
chronic pain/OA).
Lawford Australia Knee osteoarthritis N = 20 Physiotherapy Donabedian Convenience Individual Explore participants
Qualitative Research and Osteoarthritis of the Knee

et al. (2018a) • Mild to Mean age 59 yrs • Telephone delivered framework • Participation interviews perceptions of
moderate 65% women home exercise Interpretivist in RCT • Semi- telephone delivered
symptoms Mean BMI 30 program including paradigm structured exercise therapy and
5–6 exercises Thematic analysis behavioural change
performed 3 x week, strategies
over 26 weeks
• Advice to increase
physical activity, and
information booklet
about exercise,
physical activity, and
behaviour change,
access to videos
demonstrating the
exercises
(Continued)
125
 126

TABLE 8.6 (Continued)

Characteristics of Included Studies of Exercise Interventions
Demographics Method:
(N, age, sex, Framework/ Data
Study Country Population BMI) Intervention Analysis Sampling Collection Research Questions

Telephone coaching
• 5–10 calls over
26 weeks by
physiotherapist using
HealthChange
Australia model
• Calls duration
20–40 mins
Lawford Australia Physiotherapists N=8 No intervention Constructivist Convenience Individual Explore the
et al. • Mean 14 years’ Mean age 35 yrs Physiotherapists paradigm • Participation interviews experiences and
(2018b) experience 50% women completed HealthChange Thematic analysis in RCT • Semi- impacts from a
training to deliver person structured behavioural
centred care management
training course for
physiotherapists
Thorstensson Sweden Knee osteoarthritis N = 16 Exercise program Phenomenographic Convenience Individual Describe how
et al. (2006) • Moderate to Age range analysis • Participation interviews middle-aged patients
severe 39–64 yrs in trial • Semi- conceive exercise as a
radiographically 38% women, structured treatment for knee
(at least Grade Mean BMI 30 osteoarthritis
3 Kellgren
Lawrence score)
Wallis et al. Australia Knee osteoarthritis N = 21 Physiotherapy Phenomenological Convenience Individual Explore the
(2017a) • Severe 43% women • Walking program, • Participation interviews perceptions of people
radiographically Mean age 67 yrs moderate intensity in RCT • Semi with severe knee
Mean BMI 34 • 70 minutes per week, structured osteoarthritis and
in minimum of increased
10-minute sessions cardiovascular risk
• One walking session about participating
per week supervised in a walking
by physiotherapist program
Enhancing Healthcare and Rehabilitation
Qualitative Research and Osteoarthritis of the Knee 127

Health professionals and coaches delivering the study interventions also reported mostly
positive experiences. Physiotherapists perceived participation in the trials as an opportu-
nity for professional development, to acquire new skills through training and practice
in a supervised environment, and valued working together in multidisciplinary models
of care (Hinman et al. 2016). Physiotherapists prescribing exercise interventions remotely
via Skype technology in one study perceived this could enhance their clinical practice
by improving access for patients living in remote areas (Hinman et al. 2017). However,
telephone coaches highlighted difficulties with gaining rapport with participants when
communicating via telephone without visual contact (Hinman et al. 2016). Some physio-
therapists in the included studies felt that the structured trial protocol meant they could
not use their clinical reasoning to deliver the study intervention, conflicting with their
usual practice. Others saw this as a positive, removing the temptation to ‘get bogged down
with hands on stuff’ that was perceived to be less effective treatments for people with knee
osteoarthritis.
Two studies reported on the theme attitudes and beliefs about exercise and physical
activity from people with knee osteoarthritis who did not participate in an intervention
(Gay et al. 2018, Hendry et al. 2006). Commonly positive attitudes were related to perceived
benefits in function and general well-being. Despite the benefits, common misconceptions
about the cause of knee osteoarthritis were reported, with some participants believing
physical activity caused osteoarthritis and pain. Pain was a common barrier to exercise
as well as age, fear avoidance, low self-efficacy, anxiety, physical capacity, and illness.
Participants with knee osteoarthritis reported dissatisfaction when health professional
advice was conflicting or vague about exercise and physical activity. For example, par-
ticipants being told to ‘look after their knees’ may imply that rest rather than exercise is
beneficial (Hendry et al. 2006).
People with knee osteoarthritis often have low levels of physical activity and high
risks of mortality from cardiovascular disease (Nüesch et al. 2011, Wallis et al. 2013). To
address this, a recent randomised controlled trial showed 70 minutes/week of moderate
intensity physical activity delivered via a walking program for 12 weeks for patients with
severe knee osteoarthritis lead to cardiovascular benefits without increasing pain (Wallis
et al. 2017b). The effectiveness of exercise interventions, including walking programs, is
dependent on adherence, which is strongly influenced by people’s thoughts, perceptions,
attitudes, and beliefs about the risks and benefits of participation. A qualitative study
alongside this trial explored 21 participants’ subjective perspectives about the 12-week
program (Wallis et al. 2017a). Semi-structured interviews were audiotaped, transcribed
verbatim, member-checked, coded, and themes developed using thematic analysis. The
main theme identified was the participants’ overriding concern with their knee, including
pain, knee damage (unrelated to the walking program), and the view that knee replace-
ment surgery was required. As one participant said: ‘It’s not going to fix my knees because
you can’t. There’s only one way and that’s the operation’, and another: ‘I’ve got a knee that’s
absolutely shot, and buggered’.
Three subthemes were also identified: (1) the perception of functional, cardiovascular,
and psychosocial benefits with the walking program; (2) that supervision, monitoring,
and commitment were important enablers: ‘Without it (pedometer) I probably wouldn’t
have done the 10-min walk every day…so it’s been motivating’; and (3) external factors
such as the weather, ill-health, and the environment were key barriers: ‘If it’s stormy
out, I won’t go walking, if it’s hot or 30 odd degrees I probably won’t go for a walk
either.’ The three subthemes are consistent with results from the five qualitative studies
described above (Campbell et al. 2001, Hinman et al. 2016, 2017, Lawford et al. 2018b,
128 Enhancing Healthcare and Rehabilitation

Thorstensson et al. 2006) and a previous systematic review (Hurley et al. 2018) that
explored the perceptions of people with knee osteoarthritis following participation in
exercise or behavioural interventions.
The dominant theme from Wallis et al. (2017a) regarding patients overriding concern
about their knee joint, did not emerge from any other qualitative study that involved
participation in exercise and behavioural interventions for people with knee osteoarthri-
tis. There are a number of unique aspects from Wallis et al. (2017a) that may explain
this: (1) participants had severe knee osteoarthritis diagnosed radiologically and had
been referred for surgical opinion with an orthopaedic surgeon. Therefore, it is possible
participants may have gained this negative perception about their knee from messages
received about the x-rays, compared with the other qualitative trials that mainly involved
participants with mild to moderate osteoarthritis; (2) the trial did not include formal edu-
cation or behavioural management to challenge negative beliefs about their knee; and
(3) the walking program was not a joint-specific program and was focused on increas-
ing physical activity via walking, rather than focusing on addressing the patients knee
impairments.
Together, these findings provide important insights into the thoughts, perceptions, atti-
tudes, and beliefs about the risks and benefits of exercise among people with knee osteoar-
thritis and help us understand why people may or may not engage in exercise. It highlights
the importance of exercise interventions tailored to individual’s preferences, with appro-
priate levels of support and supervision. It also highlights the importance of providing
information and advice about the safety and value of physical activity and exercise, and to
address negative health beliefs. Whilst this theme of enquiry described the perceptions of
health professionals involved in delivering exercise interventions as part of a clinical trial,
there is a lack of understanding about the attitudes and beliefs towards exercise among
health professionals who are not part of a clinical trial. Given evidence that health profes-
sionals have a substantial influence on the beliefs and attitudes of their patients presenting
with musculoskeletal pain (Darlow et al. 2012), this is a worthy subject for future qualita-
tive investigation.

Total Knee Replacement Decision Making

Thirteen articles (12 studies) explored the experiences of 340 participants considering
or waitlisted for total knee replacement surgery (Table 8.7). Two systematic reviews
summarised findings from 12 primary qualitative articles exploring patient decision
making for total knee replacement (Barlow et al. 2015, O’Neill et al. 2007). Six primary
studies included in the two reviews were also included in this review. The remaining
six studies were excluded due to their focus on peri-operative or post-operative experi-
ences of total knee replacement or because they included patients undergoing total hip
replacement.
Among the 13 primary studies, seven countries were represented: Australia (n = 1),
Canada (n = 1), Kuwait (n = 1), United Kingdom (n = 3), United States (n = 5), Sweden
(n = 1), and Taiwan (n = 1). From details of participant ethnicity provided, 126 partici-
pants were African American, 9 were Hispanic, 39 were Kuwaiti women, and 26 were
Taiwanese.
Three studies involved participants scheduled for total knee replacement surgery (Hall
et al. 2008, Johnson et al. 2016, Nyvang et al. 2016) and four involved participants waitlisted
for surgery (Al-Taiar et al. 2013, Man et al. 2017, Toye et al. 2006, Woolhead et al. 2002).
One study involved participants actively considering total knee replacement surgery
TABLE 8.7
Characteristics of Included Studies of Total Knee Replacement Decision-Making
Method:
Demographics Framework/ Data
Study Country Population (N, Age, Sex) Analysis Sampling Collection Research Questions

Al-Taiar Kuwait Severe knee N = 39 Thematic analysis Convenience Focus groups Explore the pain experience
et al. (2013) osteoarthritis Mean age 62 yrs sample from and mobility limitation as
Kuwaiti women 100% women waiting list in well as the patient’ s decision
waitlisted for one public making process to undertake
total knee orthopaedic total knee replacement among
replacement hospital women with knee pain in the
waiting list for surgery.
Barlow et al. – Qualitative studies N = 7 studies Summary of Systematic review – Systematically examine the
(2015) examining literature with no of literature to qualitative literature
patients’ decision attempt at January 2015 surrounding patients’
making for total synthesis decision making in knee
knee replacement arthroplasty.
Bunzli et al. Australia Orthopaedic N = 20 An implementation All orthopaedic Individual Explore the barriers and
(2017) surgeons approach surgeons interviews facilitators to total knee
Qualitative Research and Osteoarthritis of the Knee

performing TKR involving performing TKR • Semi- replacement decision aid

deductive and at one tertiary structured uptake among orthopaedic
inductive analysis hospital surgeons.
Chang et al. US Severe knee N = 37 Content analysis Consecutive Focus groups Examine differences in
(2004) osteoarthritis Mean age 60 yrs patients actively patients’ concerns regarding
20 White and 17 68% women considering TKR total knee replacement by
African from one race/ethnicity and gender.
Americans orthopaedic
actively surgeon’s office
considering total
knee replacement
Figaro et al. US Knee osteoarthritis N = 94 Content analysis Purposive Structured Explore older urban Blacks
(2004) Not actively Mean age 71 yrs Constant sampling to field with knee osteoarthritis to
seeking total African comparative recruit from a interviews determine their preferences
knee replacement American methods church and and expectations of total knee
seniors centre replacement
proportionately.
129

(Continued)
 130

TABLE 8.7 (Continued)

Characteristics of Included Studies of Total Knee Replacement Decision-Making
Method:
Demographics Framework/ Data
Study Country Population (N, Age, Sex) Analysis Sampling Collection Research Questions

Network,
convenience and
snowball
sampling to
extend the
sample
Hall et al. Canada Unilateral knee N = 15 Grounded theory Purposive Individual Explore views of total knee
(2008) osteoarthritis Mean age 67 yrs sampling of interviews replacement and the role of
Scheduled for total 40% women preoperative • Semi- physiotherapy
knee replacement patients at one structured
orthopaedic
hospital
Johnson UK Knee osteoarthritis N = 10 Interpretive Purposive Individual Explore how the process of
et al. (2016) Scheduled for total Age range Phenomenological sampling for age interviews undergoing and recovering
knee replacement 61–78 yrs Analysis and sex from • Semi- from total knee replacement
40% women preoperative structured alters patients’ experiences
patients at a and use of their support
large hospital networks.
Kroll et al. US Knee osteoarthritis N = 37 Grounded theory Purposively Focus groups Explore the experiences,
(2007) Not actively Mean age 64 yrs sampled knowledge, beliefs, and
Suarez- seeking total 62% women attending attitudes of African American,
Almazor knee replacement 15 African primary care Hispanic, and Caucasian
et al. (2010) American, 9 clinics at the patients regarding their knee
Hispanic, and same outpatient arthritis and total knee
13 Caucasian institution replacement, in order to
understand how differing
perceptions may influence
decision-making about total
knee replacement.
(Continued)
Enhancing Healthcare and Rehabilitation
TABLE 8.7 (Continued)
Characteristics of Included Studies of Total Knee Replacement Decision-Making
Method:
Demographics Framework/ Data
Study Country Population (N, Age, Sex) Analysis Sampling Collection Research Questions

Man et al. US Knee osteoarthritis N=8 Thematic analysis Secondary Individual Explore the meaning and
(2017) Waitlisted for total Age range analysis of 8 interviews importance of occupational
knee replacement 46–80 yrs purposively • Semi- changes experienced by
50% women sampled structured individuals during the
transcripts from pre- total knee replacement
a primary study period
exploring why
people with OA
do or do not
re-engage in
pre-operative
occupations
following hip or
Qualitative Research and Osteoarthritis of the Knee

knee
replacement
Nyvang Sweden Knee osteoarthritis N = 12 Thematic analysis Purposive Individual Explore patients’ experiences
et al. (2016) Scheduled for total Mean age 66 yrs sampling for sex interviews of living with knee
knee replacement 58% women and age from • Semi- osteoarthritis when scheduled
patients structured for total knee replacement and
scheduled for further their expectations for
surgery at one future life after surgery.
hospital
O’Neill – Qualitative studies N = 10 studies Meta-ethnography Systematic review – Explore the factors that
et al. (2007) examining the of literature to influence the decision-making
experience of March 2006 process of TKR surgery by
total knee synthesising the available
replacement evidence from qualitative
research
(Continued)
131
 132

TABLE 8.7 (Continued)

Characteristics of Included Studies of Total Knee Replacement Decision-Making
Method:
Demographics Framework/ Data
Study Country Population (N, Age, Sex) Analysis Sampling Collection Research Questions

Toye et al. UK Knee osteoarthritis N = 18 Interpretive Purposive Individual Explore patients’ personal
(2006) Waitlisted for total Age range Phenomenological sampling of interviews meanings of knee
knee replacement 54–77 yrs Analysis patients listed • Semi- osteoarthritis and total knee
33% women for TKR at one structured replacement
orthopaedic
hospital with
below average
scores on the
WOMAC
Wen-Ling Taiwan Older people with N = 26 Thematic analysis Convenience Individual Explore factors related to the
et al. (2017) knee Mean age 74 yrs sampling from interviews indecision of older adults
osteoarthritis 77% women two medical • Semi- with knee osteoarthritis about
Recommended a centres and one structured receiving physician-
total knee regional hospital recommended total knee
replacement by replacement and their needs
surgeon, but are during the decision-making
indecisive process.
Woolhead UK Knee osteoarthritis N = 25 Constant Purposive Individual Explore patients’ views on who
et al. (2002) except for 1 Mean age 65 yrs comparison sampling for sex interviews should have priority for total
person with 58% women and age from • Semi- knee replacement
rheumatoid patients wait structured
arthritis and listed for
systemic lupus surgery with 3
erythematosus. orthopaedic
Waitlisted for total surgeons
knee replacement
Enhancing Healthcare and Rehabilitation
Qualitative Research and Osteoarthritis of the Knee 133

(Chang et al. 2004) and one involved participants who had been recommended a knee
replacement, but were indecisive about whether or not to have it (Wen-Ling et al. 2017).
Two studies (three articles) involved participants with knee osteoarthritis that were not
actively considering total knee replacement surgery (Figaro et al. 2004, Kroll et al. 2007,
Suarez-Almazor et al. 2010). One study involved orthopaedic surgeons that perform total
knee replacement (Bunzli et al. 2017).
The majority of studies aimed to understand decision making processes for total knee
replacement to address unmet needs in light of evidence of regional variation and inequi-
ties in uptake of total knee replacement. Common themes reported included: (1) arriving
at the tipping point at which participants would seriously consider total knee replacement;
(2) sources of information about total knee replacement and the information needs of people
considering surgery; and (3) barriers to uptake of total knee replacement.
The theme ‘tipping point’ was reported in eight studies (Al-Taiar et al. 2013, Hall et al.
2008, Johnson et al. 2016, Man et al. 2017, Nyvang et al. 2016, Suarez-Almazor et al. 2010,
Toye et al. 2006, Wen-Ling et al. 2017). Participants described the occupational, functional,
social, and emotional impact of knee osteoarthritis. They believed knee osteoarthritis was
a progressive disease that would get worse over time. Many had experienced a worsening
trajectory, feeling less able to cope with pain and the impact of pain as time progressed.
Coping strategies and non-operative interventions became continually less effective as
participants arrived at the ‘tipping point’, the point at which they felt that their best option
was a total knee replacement.
Eight studies reported themes related to sources of information about total knee replace-
ment (Al-Taiar et al. 2013, Chang et al. 2004, Hall et al. 2008, Johnson et al. 2016, Nyvang
et al. 2016, Suarez-Almazor et al. 2010, Toye et al. 2006, Wen-Ling et al. 2017). Participants
turned to general practitioners and surgeons for information about total knee replace-
ment, however, the information participants sought varied according to sex and race. The
study by Chang et al. (2004) found white men had questions that typically aligned with the
information provided by surgeons such as what intraoperative techniques were involved.
White women had questions about the preoperative and post-operative phases such as
functional recovery and limitations. African American women had more practical ques-
tions about support needs after surgery. Across many studies there was a perceived lack of
information from doctors about likely surgical outcomes. Participants’ outcome expecta-
tions were influenced by the positive and negative experiences of others in their social net-
work. Among those waitlisted for surgery, there was an expectation surgery would ‘cure’
the disease process with subsequent improvements ranging from a significant improve-
ment in pain and function to a return to their ‘normal’, pre-knee osteoarthritis lives.
Seven studies (eight articles) reported themes related to the barriers of uptake of total
knee replacement (Al-Taiar et al. 2013, Chang et al. 2004, Figaro et al. 2004, Kroll et al. 2007,
Nyvang et al. 2016, Suarez-Almazor et al. 2010, Wen-Ling et al. 2017, Woolhead et al. 2002).
The decision to undergo a knee replacement was frequently described as a social one,
involving not only the surgeon and participant, but also the participant’s family. In the
study by Al-Taiar et al. (2013) of Kuwaiti women, approval had to be sought from family
members to undergo knee replacement surgery. In other studies, conflict between family
members about the need or readiness for surgery and their availability to provide care
post-operatively was a barrier to uptake. One study in the United Kingdom focused on
system barriers to uptake such as waiting lists in public hospitals (Woolhead et al. 2002).
Studies conducted in the United States highlighted participant concerns about the cost of
total knee replacement. Fear related to the anaesthetic was identified in several studies.
In one study, participants indecisive about surgery felt they were too old and worried that
134 Enhancing Healthcare and Rehabilitation

their significant comorbidities placed them at increased risk of adverse effects (Wen-Ling
et al. 2017). Uncertainty about the surgical outcome was reported in several studies, with
some participants stating a preference to continue in their current state, summed up pow-
erfully by the comment: ‘I know what I have, I don’t know what I am going to get’. Studies
involving minority groups identified a number of barriers to uptake including fear of sur-
gery, scepticism about the longevity of the prosthetic device, and a distrust of clinicians
and the medical system.
Consistent with previous reviews (Barlow et al. 2015, O’Neill et al. 2007), these find-
ings provide valuable insight into the social processes that influence patient candidacy,
expectations for and uptake of total knee replacement processes that may be targeted
to better meet the needs of people with knee osteoarthritis, and improve equity in total
knee replacement. Social processes also influence surgeon decision making for total knee
replacement, and one study explored these processes by interviewing orthopaedic sur-
geons about their decision-making processes and biases, and their beliefs and attitudes
towards decision aids for total knee replacement.
Decision aids have been shown to reduce variations in clinical judgements and promote
shared decision making by helping patients understand their likely outcomes from sur-
gery (Knops et al. 2013, Sacks et al. 2016). Implementing decision aids into routine ortho-
paedic practice may be one way to improve equity in total knee replacement, but only if
surgeons are ready, willing, and able to use them.
Bunzli et al. (2017) adopted an implementation approach, using a validated theoretical
framework to systematically explore the barriers and facilitators to uptake of a decision
aid through interview questions structured on the framework. The theoretical framework,
describing 14 mediators of clinician behaviour change, has been used in the health lit-
erature to design studies that are better able to facilitate behaviour change and provide
a basis for better understanding the processes underpinning behaviour change (Michie
et al. 2005).
The authors interviewed 20 orthopaedic surgeons performing total knee replacement
at one large tertiary hospital. They used deductive coding techniques to classify inter-
view responses into the 14 mediator domains and inductive techniques to identify beliefs
underlying common responses in each domain. The results described key beliefs likely
to influence surgeons’ uptake of a decision aid. These were: the belief that the surgeons’
own patient outcomes from total knee replacement were better than those reported in
the literature (Knowledge domain) and an acknowledgement that objective feedback on
patient outcomes was lacking (Behavioural regulation domain). Surgeons expressed dif-
ficulty assessing patient-related factors known to influence outcomes from knee replace-
ment (Capability domain). They relied on their ‘gut-feelings’ about the patient (Skills
domain) and perceived surgery to be an art and a science (Professional identity domain).
Most believed decision aids could enhance communication and patient informed consent
(Consequences domain), but expressed concerns about mandatory cut-offs that would
exclude some patients from surgery, particularly as they perceived a lack of effective
non-operative alternatives (Environmental context domain).
The findings suggest multifaceted strategies may be needed to promote uptake of a
decision aid among orthopaedic surgeons. For example, audit/feedback methods may be
needed to address current decision-making biases such as overconfidence about patient
outcomes, enhancing readiness to uptake. Policy changes and/or incentives may enhance
willingness of surgeons to uptake. Ensuring there are avenues surgeons can access to pro-
vide effective non-operative treatments for disabling knee osteoarthritis may also enhance
uptake by ensuring that surgeons have the resources they need to carry out decisions.
Qualitative Research and Osteoarthritis of the Knee 135

Qualitative research involving orthopaedic surgeons is rare. Surgeons are time-poor and
may be reluctant to participate in interview studies in which they may perceive their beliefs
and practices are being challenged. However, the surgeons’ perspective is an important
pavestone that together with the perspectives of the patient, caregivers, primary care prac-
titioners, advocacy groups, and policy makers, can help lay the path to improved equity
for total knee replacement and better meet the needs of people with knee osteoarthritis.

Discussion
This systematic review has demonstrated the breadth of qualitative research on knee osteo-
arthritis, a total of 56 articles reporting the results of 49 qualitative studies. Participants
reported on the experience of living with knee osteoarthritis, their experiences of inter-
ventions to manage their condition, and the decision-making process of deciding whether
to proceed with total knee replacement surgery.
Collectively, the qualitative studies in this review demonstrate the important role that
patient views and attitudes play in effective management of their condition and in choos-
ing management options. Application of interventions considered to be appropriate in
clinical practice guidelines such as exercise, self-management, and weight management
(Australian Commission on Safety and Quality in Health Care 2017, McAlindon et al. 2014,
National Institute for Health and Care Excellence 2014) was not always perceived positively
by people with knee osteoarthritis. A crucial factor in the success of these evidence-based
interventions appeared to be when patient factors and attention to behavioural change
techniques were taken into account. Also, personal and social factors play an important
role in the decision about whether to proceed to total knee replacement.
Exercise interventions that combine behavioural change interventions such as health
coaching and a strong commitment and connection with supervising clinicians were
viewed favourably by people with knee osteoarthritis. In contrast, when supportive
elements appeared to be given little emphasis, people appeared more likely to perceive the
intervention negatively. In these cases, patients with knee osteoarthritis also had negative
perceptions of their clinicians. It seems that when evidence-based interventions work, an
important factor may be how each intervention is implemented.
The emotional and psychosocial impact of knee osteoarthritis emerged as a key fac-
tor in the lived experience of people with knee osteoarthritis. The anxiety, depression,
and feeling of hopelessness that emerged as a theme in our review have received little
attention in clinical practice guidelines. For example, the Osteoarthritis Research Society
International (OARSI) guidelines (McAlindon et al. 2014) make no mention of interven-
tions to address the psychological impact of knee osteoarthritis. The recent Australian
Osteoarthritis of the Knee Clinical Care Standard (Australian Commission on Safety and
Quality in Health Care 2017) and NICE guidelines (National Institute for Health and Care
Excellence 2014) acknowledge the importance of patient-centred care. They include specific
recommendations for a psychosocial evaluation to identify unique factors that may affect
a person’s quality of life and participation in usual activities (Australian Commission on
Safety and Quality in Health Care 2017). However, no mention is made of interventions to
address the emotional impact of knee osteoarthritis.
Education is recommended in clinical practice guidelines (Australian Commission
on Safety and Quality in Health Care 2017, National Institute for Health and Care
136 Enhancing Healthcare and Rehabilitation

Excellence 2014). Education can address patient misconceptions about osteoarthritis, such
as the effect of exercise (Gay et al. 2018, Hendry et al. 2006) and can help patients partici-
pate in decisions about their management. Qualitative analysis adds to clinical practice
guidelines by providing insights into how patient education may be conducted. The use of
decision aid tools has been viewed favourably by patients and clinicians (Elwyn et al. 2018,
Kinsey et al. 2017). A key benefit of such tools may be in the way that they facilitate com-
munication between patient and clinician to optimise education. However, recent qualita-
tive analysis suggests that orthopaedic surgeons remain sceptical about the benefit of tools
to assist the decision to proceed to total knee replacement (Bunzli et al. 2017). These find-
ings suggest multifaceted strategies may be needed to promote uptake of a decision aid
among orthopaedic surgeons, including taking into account the perceptions of patients.
A limitation of this review was that the methodological quality of the included studies
such as credibility, transferability, dependability, and confirmability (Guba 1981) was not
assessed. However, the aim was to explore the breadth of qualitative research in the area
not to rate the rigour and trustworthiness of individual studies. Strengths of the review
include the comprehensive search strategy and the thematic analysis approach.
In conclusion, the breadth of this review has highlighted the value of taking patient
attitudes and experiences into account when planning and implementing management
options for people with knee osteoarthritis.

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9
Shaping Rehabilitation after Spinal Cord
Injury: The Impact of Qualitative Research

Kristin E. Musselman, Hardeep Singh and Janelle Unger

CONTENTS
Introduction to Spinal Cord Injury and Disease..................................................................... 141
Evidence-Based and Person-Centred Care in SCI/D Rehabilitation................................... 143
Translation of SCI/D Research Evidence into Clinical Practice ........................................... 144
Knowledge Creation for SCI/D Rehabilitation: Inquiry ....................................................... 145
Knowledge Creation for SCI/D Rehabilitation: Synthesis ................................................... 148
Knowledge Creation for SCI/D Rehabilitation: Tool or Product Development................ 153
Putting Knowledge into Action ................................................................................................ 154
Action Cycle: Adapting Knowledge and Assessing Barriers ............................................... 154
Action Cycle: Evaluating Outcomes ........................................................................................ 156
Future Directions of Qualitative Research to Inform SCI/D Rehabilitation ...................... 159
References .................................................................................................................................... 160

Introduction to Spinal Cord Injury and Disease

Compared with other neurological conditions, the incidence of spinal cord injury or dis-
ease (SCI/D) is low, but it is a costly condition that results in significant disability. SCI/D
results from a combination of direct damage to the spinal cord and secondary reactions
to the damage, such as ischemia, inflammation, ion derangement, and apoptosis (Somers
2009). This leads to cell death and demyelination, impeding transmission of some or all
afferent and efferent information between areas below and above the damage. Motor,
sensory, and autonomic functions are commonly affected. Further, the lack of sensation
and/or mobility following SCI/D results in a number of significant sequelae, including
contractures, pressure injuries, osteoporosis, muscle atrophy, pain, and cardiovascular
deconditioning (McKinley et al. 1999, 2002; Giangregorio and McCartney 2006; Sipski and
Richards 2006; Tan et al. 2013; Brienza et al. 2018). Depression (Khazaeipour et al. 2015) and
cognitive impairment (Craig et al. 2017) may also be experienced, and many individuals
with SCI/D have low levels of participation in social relationships, employment, and rec-
reation (Dijkers 2005; Hammell 2007a).
SCI may result from a traumatic event causing a sudden onset of damage, for exam-
ple, the cause may be a fall, motor vehicle accident, sports accident, or act of violence.
The global prevalence of traumatic SCI is estimated to be 10.5 cases per 100,000 people,
with about 768,473 new cases occurring each year (Kumar et al. 2018). In contrast, the
onset of damage to the spinal cord may also be more gradual, as in the case of tumours,

141
142 Enhancing Healthcare and Rehabilitation

infections, or degeneration of the spinal column. Non-traumatic SCI/D is a heterogeneous

group of conditions that can be challenging to identify (New et al. 2017). As a result,
good quality epidemiological data on non-traumatic SCI/D are lacking (New et al. 2017).
Non-traumatic SCI/D is estimated to be two to three times more common than traumatic
SCI (Nesathurai 2013), with a recent Australian study estimating the prevalence to be 36.7
cases per 100,000 people (New et al. 2013).
Although SCI/D is a low prevalence condition, it is expensive. The total annual cost
of SCI/D in the United States is 21.5 billion dollars, with direct costs accounting for
14.0–18.1 billion dollars and indirect costs (e.g., loss of wages) accounting for 3.83–7.0 billion
dollars (Ma et al. 2014). The ‘lifetime economic burden’ of SCI/D increases with increasing
severity of SCI/D, ranging from 1.5 million Canadian dollars for incomplete paraplegia to
3.0 million Canadian dollars for complete tetraplegia (Krueger et al. 2013). With respect to
the cost of specific health services, the cost of inpatient rehabilitation exceeds the cost of
other services, such as emergency care, acute inpatient, complex continuing care, physi-
cian visits, and home care services (Munce et al. 2013). Moreover, access to these services
extends beyond the initial spinal damage. Each year individuals with SCI/D have more
than double the number of hospital visits than the general population and the lengths of
stay of individuals with SCI/D are three times longer (Dryden et al. 2004). With respect to
indirect costs, at 1 year after the onset of SCI/D, the employment rate amongst individu-
als with SCI/D is only about 12%, increasing to about 35% in the chronic stages of injury
(Ottomanelli and Lind 2009; Ma et al. 2014). This long-term employment rate is consider-
ably lower than the reported 57% employment rate prior to onset of SCI/D (Ma et al. 2014).
Compared with other neurological conditions, individuals with SCI/D are significantly
younger, yet they have the largest proportion with low education (20%), and the largest
proportion living on a household income of less than $25,000 USD/year (Matsuda et al.
2015). Thus, SCI/D comes with great economic, as well as personal, cost.
The clinical presentation of SCI/D is heterogeneous and primarily influenced by the
areas of the spinal cord that are damaged (i.e., neurological level of injury) and the sever-
ity of that damage. Many individuals with SCI/D will experience autonomic dysfunction,
as normal sympathetic-parasympathetic balance is disrupted (Somers 2009). Injury to the
cervical and thoracic spinal cord results in an upper motor neuron injury, characterised by
paralysis, hyperreflexia, spasticity, sensory impairments, and a spastic bladder and bowel.
Respiration is considerably impaired in individuals with damage to the fifth cervical seg-
ment or higher, but also compromised in those with damage to the lower cervical and
thoracic cord due to the role of intercostal and abdominal muscles in respiration. Lesions
below the second lumbar vertebral body result in primarily lower motor neuron signs,
such as flaccid weakness, hyporeflexia, sensory impairments, and a flaccid bladder and
bowel, whilst injury to the first and second lumbar vertebral bodies result in a mix of
upper and lower motor neuron signs (Nesathurai 2013). The neurological level of injury is
an important determinant of independence in self-care, individuals with damage to the
first thoracic level or lower are typically able to complete self-care activities independently
(Ma et al. 2014), regardless of the severity of their injury.
The severity of damage to the spinal cord also impacts the degree of impairment and
resulting restrictions in function. The American Spinal Injury Association Impairment
Scale (AIS) characterises the severity of damage to the motor and sensory systems. An AIS
A SCI/D indicates the most severe damage, there is no preservation of sensory or motor
function below the neurological level of injury, including the fourth and fifth sacral seg-
ments. With AIS B SCI/D there is some sensory, but no motor, function present below the
injury level. In contrast, AIS C and D SCI/D are motor incomplete injuries, meaning some
Shaping Rehabilitation after Spinal Cord Injury: The Impact of Qualitative Research 143

motor and sensory functions are preserved below the level of injury, with the difference
between these two grades dependent upon the strength of the affected muscles. Severity
of SCI/D is an important determinant of mobility status after SCI/D (Marino et al. 1999;
Burns et al. 2012; Scivoletto et al. 2014). Whilst individuals initially diagnosed with AIS A
injuries rarely regain walking function, 20%–50% of those with AIS B injuries and 75% of
those with AIS C or D injuries will regain some walking function by 1 year post-injury
(Burns et al. 2012).
In sum, SCI/D is a rare, but expensive, health condition that is characterised by sensory,
motor, and autonomic dysfunction, often resulting in life-long disability. There is consid-
erable heterogeneity in the clinical presentation of SCI/D, hence, each individual’s experi-
ences and rehabilitation needs following SCI/D are unique.

Evidence-Based and Person-Centred Care in SCI/D Rehabilitation

The medical care and rehabilitation of individuals with SCI/D are life-long processes.
In recent decades there has been a shift towards adoption of a person- or client-centred
approach to the delivery of healthcare services, in which the client is viewed as an equal
and active participant in the planning and monitoring of his/her care (Ministry of Health
and Long Term Care 2000; Cott 2004). A person-centred approach is both holistic (i.e., tar-
gets biological, psychological, and social aspects of health) and specific to the individual
(i.e., considers his/her values and preferences) (Leplege et al. 2007; Epstein and Street
2011). Person-centred care addresses everyday challenges, preparing clients for community
living and the specific life roles they assume (Leplege et al. 2007). The role of healthcare
professionals within person-centred care is to inform and empower their clients such that
the clients are well-positioned to make healthcare decisions (Leplege et al. 2007). Person-
centred care facilitates a personalised approach to rehabilitation, which is well-suited for a
heterogeneous condition like SCI/D. This approach improves outcomes, reduces costs, and
prepares individuals with SCI/D to manage their own care once discharged from inpatient
rehabilitation (Ministry of Health and Long Term Care 2000; Cott 2004; Delaney 2017).
Although there is increasing emphasis on a person-centred approach in the reha-
bilitation of people with SCI/D, an evidence-based approach is also valued. Currently,
evidence-based care is informed by research findings derived largely from quantitative
studies (Carpenter and Suto 2008) in which a homogeneous group of study participants,
and standardised study interventions and outcomes, are desired. For example, Spinal
Cord Injury Research Evidence (SCIRE) is a Canadian initiative to review and rate original
research in the areas of acute care and rehabilitation for SCI/D (SCIRE 2018). Five levels of
evidence, modified from Sackett et al. (2000), are used to rate the strength of the evidence.
Randomised controlled trials provide the strongest evidence, whilst case reports, clini-
cian consensus, and observational studies provide the lowest (SCIRE 2018). The SCIRE
organisation (SCIRE 2018) and Sackett et al. (1996) acknowledge the importance of clinical
experience in making evidence-based decisions, yet the levels of evidence offer little to no
detail on how the client’s perspectives factor into evidence-based care.
Standardised, quantitative outcomes are valued not only in research studies, but clinical
environments as well. In recent years large databases of quantitative outcomes have been
collected during the acute care and rehabilitation of SCI/D, for example, the European
Multicenter Study about Spinal Cord Injury (EMSCI) and the Rick Hansen Spinal Cord
144 Enhancing Healthcare and Rehabilitation

Injury Registry (RHSCIR) in Canada. Whilst these data are helpful for informing health-
care practices and policies, reliance on such positivist approaches results in an incomplete
body of evidence that neglects the perspectives of the clients, caregivers, and healthcare
professionals (Carpenter and Suto 2008).
In theory, evidence-based practice should consider the strongest research evidence,
along with clinical expertise and each client’s unique values, perceptions, and experiences
(Carpenter and Suto 2008), however, the latter two are currently under-valued. Qualitative
research can address this gap. Qualitative methodologies contribute to the evaluation of
clinically relevant questions that are meaningful to individuals with SCI/D and the cli-
nicians who work with them. Clinicians naturally adopt qualitative inquiry, monitoring
change in their client’s function through dialogue, and open-ended questions. For indi-
viduals with SCI/D, who spend a limited amount of time as inpatients, it is important
that rehabilitation is productive. Keeping in mind that the overall goal of rehabilitation is
to equip clients with the skills needed for community integration, it is important that the
information and training provided is useful, relevant, and meaningful to individuals with
SCI/D. Qualitative studies can help healthcare professionals set priorities for rehabilita-
tion. Moreover, since qualitative research is able to embrace the heterogeneity of SCI/D,
rather than trying to control and reduce it, qualitative methodologies may be particularly
well-suited for the development and evaluation of interventions, services, and policies in
SCI/D rehabilitation.

Translation of SCI/D Research Evidence into Clinical Practice

Advancements in the medical care and rehabilitation of individuals with SCI/D require not
only person-centred and evidence-based methods, but successful implementation of these
methods into practice. Implementation refers to ‘systematic efforts to encourage adoption’
(Graham et al. 2006). The challenge of implementing research findings in practice was
highlighted at a recent gathering of international experts in SCI/D, which included indi-
viduals with SCI, researchers, clinicians, and representatives from SCI/D funding organ-
isations (Rick Hansen Institute 2016). Similarly, we recently completed an environmental
scan of current research studies that promote neurorecovery in SCI/D and demonstrated a
gap between the interventions being researched and the characteristics known to facilitate
clinical implementation of new research findings (Musselman et al. 2018b). For example,
interventions feasible to use in hospitals and clinics, appropriate for the current healthcare
context, and meaningful to the client, are more likely to be adopted (Pearson et al. 2005;
Musselman et al. 2018b). When considering how to lessen this gap, one of our recommen-
dations was to incorporate more qualitative methodologies into SCI/D research, enabling
the perspectives of individuals with SCI, clinicians, and other stakeholders to guide the
research process and subsequent implementation (Musselman et al. 2018b).
The process of translating evidence-based research findings into clinical practice is fre-
quently depicted by the Knowledge to Action (KTA) framework (see Figure 9.1). The KTA
framework has been adapted for a variety of health service settings and is one of the most
commonly cited conceptual frameworks for knowledge translation (Field et al. 2014). This
framework includes two dynamic components that influence one another: knowledge cre-
ation and the action cycle (Graham et al. 2006). Knowledge creation reflects the process of
generating knowledge, largely through research-based activities. This process is depicted
Shaping Rehabilitation after Spinal Cord Injury: The Impact of Qualitative Research 145

FIGURE 9.1
KTA framework. Grey shading indicates phases within the Knowledge Creation or Action Cycle where qualita-
tive research methodologies have been applied to advance evidence-based and person-centred care in SCI/D
rehabilitation. (Adapted from Graham, I. et al., J. Contin. Educ. Health Prof., 26, 13–24, 2006.)

as a funnel, with knowledge becoming more refined, and likely more useful to stakehold-
ers, as it passes through the phases of inquiry, synthesis, and tool or product development.
As knowledge enters the action cycle, it is tailored to the needs of those who will use it and
applied in their environment. The outcomes of the implementation initiative(s) are evalu-
ated, and these results are used to refine the implementation process. Newly generated
knowledge is adopted as the cycle continues (Graham et al. 2006).
To maintain a person-centred and evidence-based approach to SCI/D rehabilitation,
qualitative research methodologies are being increasingly used throughout knowledge
creation and the action cycle/implementation (see grey-shaded phases in Figure 9.1). In the
remainder of this chapter, we will demonstrate how qualitative research methodologies
highlight the perspectives of individuals with SCI/D and other stakeholders throughout
the processes of knowledge creation and implementation, ultimately resulting in person-
centred and evidence-based care.

Knowledge Creation for SCI/D Rehabilitation: Inquiry

Knowledge creation begins with the inquiry phase, when one is trying to determine
what issues or problems exist and why. The inquiry phase of knowledge creation can
be thought of as ‘first-generation knowledge’ (Graham et al. 2006) in which the research
questions are exploratory in nature, examining relationships and seeking information to
guide future research directions. Qualitative research designs are well-suited to facilitate
146 Enhancing Healthcare and Rehabilitation

the process of inquiry. Detailed insight into an issue or problem may be achieved through
qualitative methods, which involve an ongoing process of refining the research questions as
understanding of the issue or problem increases (Agee 2009).
We have used qualitative research methodologies to lay the foundation for our research
examining falls and fall prevention after SCI/D. Compared with other neurological popu-
lations (Batchelor et al. 2010; Allen et al. 2013; Cameron et al. 2014; Canning et al. 2014),
surprisingly little is known about the causes and impact of falls amongst individuals
with SCI/D, resulting in a paucity of information to guide SCI/D-specific fall prevention
initiatives. As a first step towards effective fall prevention for SCI/D, we sought a greater
understanding of the causes and consequences of falls amongst individuals with SCI/D.
The majority of data collected about falls after SCI/D has been achieved through quantita-
tive means, such as surveys (Brotherton et al. 2007; Amatachaya et al. 2011; Phonthee et al.
2013a, 2013b; Matsuda et al. 2015; Saunders and Krause 2015). Since quantitative research
questions are based on hypotheses, study variables are predetermined (Hammell 2007a),
resulting in an incomplete picture of the issue. For example, a ‘loss of balance’ and ‘envi-
ronmental hazards’ have been identified as causes of falls through survey methodology
(Phonthee et al. 2013b), however, these findings lack clarity. Further, surveys and other
quantitative methods offer little insight into the perceptions of those who experience the
falls. To develop a solid foundation for future research on a complex, multi-factorial issue
such as falls, we sought to understand: Why do individuals with SCI/D believe they fall?
What factors do they perceive to place them at a greater or lesser risk of falling? How does
the risk of falling impact their lives?
To learn about the issue of falls from the experts – people with SCI/D who live with the
experience and risk of falling – we are using qualitative methodologies, specifically photo-
elicitation interviewing (Harper 2002; Clark-Ibáη ∼ ez 2004; Musselman et al. 2018a) and
photovoice (Wang and Burris 1997; Wang 1999, 2006; La Vela et al. 2018). Photo-elicitation
interviewing and photovoice are emerging qualitative methodologies in health-related
research (Lal et al. 2012). These methods use photographs, interviews, and group discus-
sion to explore a group’s strengths and concerns surrounding an issue (Wang and Burris
1997). We asked participants with ASI C or D SCI/D to take pictures that: (1) identified fac-
tors that influenced, positively or negatively, their risk of falling and (2) described how the
risk of falling affected their mobility and physical activity (Musselman et al. 2018a).
The photos provided visual data to support the stories and information being shared by
the participants and facilitated dialogue between the interviewer and interviewee.
We found that the participants primarily perceived environmental factors (e.g., stairs,
unmaintained sidewalks, snow, and ice) as placing them at risk of falls, along with some
biological (e.g., reduced strength, fatigue) and behavioural (e.g., taking risks) factors
(see Figure 9.2) (Musselman et al. 2018a). These findings were not surprising and generally
aligned with the results of previous quantitative studies (Brotherton et al. 2007; Nelson
et al. 2010; Phonthee et al. 2013b; Amatachaya et al. 2015). However, some categories and
themes that emerged through thematic analysis of the data were unexpected. For example,
despite the focus of the study on mobility and physical activity, participants spoke of the
impact of fall risk on their emotional well-being. Moreover, participants explained that
they learnt to reduce their risk of falling and injury through previous experience with
falls. We had not thought to ask a priori about emotional well-being and/or how the expe-
rience of falling may be helpful, but the qualitative research approach enabled these issues
to be discovered. The detailed information and insight that we obtained into the issue of
falls and fall risk after incomplete SCI/D would not have been possible through quantita-
tive research methods.
Shaping Rehabilitation after Spinal Cord Injury: The Impact of Qualitative Research 147

FIGURE 9.2
Photos representing situations that increase fall risk, taken by individuals with motor incomplete SCI/D.
(a) One participant with central cord syndrome explained how taking the bus, which was her primary means of
transportation, placed her at risk of falls. If you don’t have that ability to reach for [the grab handles], then your likeli-
hood to fall is greater. Because her upper extremities were more affected than her lower extremities, her balance
impairments were not evident, and she often had difficulty getting a seat on a crowded bus. Taking the bus was
stressful for her: …the first thing that I look for is how full is the bus and will I get a seat? If it’s too full then I won’t go on
[that] bus…if you miss that one bus you kind of impact yourself for whatever you have scheduled later. This photo dem-
onstrates the intersection of environmental and biological factors contributing to fall risk. (b) One participant
took a picture of the playground that he visits with his 3-year-old daughter. He has fallen several times at this
park, whose artificial ground has been in need of repair for some time. The participant did not want to stop tak-
ing his daughter to the playground though: I wouldn’t stop myself to not go to a park or any environment. Just be more
aware of certain things, what my ability is and what I can do. He chooses to take a risk in this situation. This photo
demonstrates the intersection of environmental and behavioural factors contributing to fall risk.
148 Enhancing Healthcare and Rehabilitation

Through photo-elicitation interviewing, individuals with SCI/D were able to inform us

about the important issues that warrant further study. For example, since individuals with
SCI/D spoke about feelings of frustration and anxiety as related to falls, we are now com-
pleting a mixed-methods study that examines the impact of falls on the quality of life and
autonomy of wheelchair users and ambulators with SCI/D. Another example concerns
a new approach to balance training after SCI/D. Since individuals with SCI/D reported
learning how not to fall through falling, we are evaluating the efficacy of a balance train-
ing program that enables participants with AIS C or D SCI/D to experience falling in a safe
environment (Unger et al. 2018a).
There are numerous examples of how exploratory qualitative research methods
have been used by researchers during the inquiry phase of knowledge creation (see
Table 9.1). This preliminary research is guiding the direction of future SCI/D rehabili-
tation research and intervention development concerning issues such as physical activ-
ity promotion (Papathomas et al. 2015), management of chronic pain (Norman et al.
2010), and needs of SCI/D caregivers (Espino et al. 2018). Hence, exploratory qualitative
research enables individuals with SCI/D, caregivers, and other stakeholders to iden-
tify meaningful issues. This foundational knowledge is crucial for the development of
appropriate and effective interventions, products, measurement tools, and policies in
rehabilitation.

Knowledge Creation for SCI/D Rehabilitation: Synthesis

Following the inquiry phase, ‘second-generation knowledge’ (Graham et al. 2006) is pro-
duced through the aggregation and appraisal of findings from the inquiry phase using
rigorous methods, such as systematic reviews, meta-analyses, and meta-syntheses. The
synthesis of research findings enables identification of common results and/or prin-
ciples across studies that likely vary in geographical location and/or research context
(Graham et al. 2006). This level of evaluation often produces what is considered the high-
est level of evidence by knowledge sharing initiatives.
Although aggregating the results of quantitative studies is commonplace in rehabilita-
tion research, the use of review methodology for qualitative studies is becoming more
common (Estabrooks et al. 1994; Carpenter and Suto 2008). Unlike quantitative reviews,
qualitative syntheses aim to create new interpretations through thematic analysis across
studies (Finfgeld 2003), in addition to identifying similarities and differences in the find-
ings of included studies. Amongst the first meta-syntheses completed in the area of SCI/D
rehabilitation are the works by Hammell (2007a, 2007b). One of these meta-syntheses
examined the experiences of inpatient rehabilitation from the perspectives of individuals
with SCI/D (Hammell 2007b). This synthesis of eight qualitative studies highlighted the
dimensions that contribute to a positive inpatient rehabilitation experience, such as work-
ing with caring staff, interacting with SCI/D peers, and practicing skills that match the
skills needed in the ‘real world’ (Hammell 2007b).
Similarly, we recently used thematic synthesis methodology to complete a meta-synthesis
examining the experiences of individuals with SCI/D participating in 26 different physical
rehabilitation interventions (Unger et al. 2018c). Thirty-one studies were included in our
meta-synthesis. This number is an almost four-fold increase from the review completed by
Hammell (2007b) a decade earlier, reflecting the increased uptake of qualitative methods in
TABLE 9.1
Examples of Qualitative Studies Reflecting the Inquiry Stage of Knowledge Creation
Study Aim (A), Methods (M), and
Citation Participants (P) Key Findings Recommendation(s) for Future Research

Chan (2000) A: Explore the impact of SCI/D • Spousal relationship & family dynamics • Investigate intervention framework based on
upon the family & marital were altered perspectives of both partners
relationship • Culture & environment had an influence • Qualitative research to broaden understandings of the
M: Semi-structured interviews on spousal & family roles impact of SCI/D on partner relationships
analysed using content analysis • Greater strain in relationship during
P: Individuals with SCI/D (n = 66), early stage of SCI/D
spouses (n = 40) • Mutual understanding, support, & open
communication were important
components of lasting relationships
Mahoney A: Understand daily experiences of • Spasticity impacts multiple domains of • Understand the perspective of consumers to broaden
et al. (2007) individuals with SCI/D who an individual’s life including the frames of reference & inform interventions
experience spasticity physical, emotional, economic, • Qualitative findings to guide instrument development
M: Semi-structured interviews, interpersonal, management, & cognitive to measure impact of spasticity
observations, field notes • Perspectives on spasticity management • Shift in thinking from a ‘fix it’ model to a more
P: Individuals with SCI/D who of insiders (individuals experiencing individualised intervention in spasticity management
experience spasticity (n = 24) spasticity) can vary from outsiders (e.g.,
clinician)
Norman et al. A: Explore questions that • Unmet information needs about chronic • Develop comprehensive, innovative chronic pain
(2010) individuals with SCI/D have pain were identified interventions that address information gaps
about their chronic pain and • Questions about chronic pain were • Tailor current/future interventions to preferred
their preferred methods to seek related to: the cause, management, information seeking method
information communication, getting information, • Knowledge translation efforts in SCI/D-pain research
M: Semi-structured interviews others’ experiences, & expectations should consider engaging individuals with SCI/D as
analysed using content analysis trainers & educators
P: Individuals with SCI/D (n = 12) • Qualitative research to understand whether
information needs of men with chronic pain differ from
Shaping Rehabilitation after Spinal Cord Injury: The Impact of Qualitative Research

those of women
(Continued)
149
 150

TABLE 9.1 (Continued)

Examples of Qualitative Studies Reflecting the Inquiry Stage of Knowledge Creation
Study Aim (A), Methods (M), and
Citation Participants (P) Key Findings Recommendation(s) for Future Research

Kuipers et al. A: Explore how adults with SCI/D • Three aspects of community were • Investigate the diversity in perspectives amongst
(2011) describe their local communities significant to an individual’s individuals with SCI/D about community integration
M: Telephone interviews analysed understanding of their community: • Consider individual perspectives in community
using thematic analysis social integration, independent living, & rehabilitation interventions
P: Individuals with SCI/D occupation • Understand macro & societal level influences in
(n = 269) • Diversity in responses existed amongst community integration such as advocacy & policy
participants change
Aune (2013) A: Explore how women with • New mothers with SCI/D perceived • Investigate interventions to meet better needs of
traumatic SCI/D manage their health professionals lacked knowledge mothers with SCI/D
daily lives after becoming of their needs • Qualitative research to include the perspective from
mothers & societal barriers • Environmental barriers related to fathers with disabilities & changing family role when
experienced inaccessible public spaces & societal one parent has a disability
M: Semi-structured interviews attitudes were challenges faced by
P: Mothers with SCI/D (n = 4) mothers
• Over time & with experience mothers
felt more confident in their abilities
Papathomas A: Identify physical activity • After SCI/D, exercise was: A restitution, • Qualitative data collection to further explore this topic
et al. (2015) narratives medicine, & progressive redemption in more detail (e.g., examine whether time of injury
M: Open-ended, semi-structured • Restitution may motivate physical impacts perspectives, & whether differences exist
interviews analysed using activity in early stages of rehabilitation based on age, sex, & type of SCI/D)
narrative analysis • Exercise as medicine may be a life-long • Explore whether these narratives can be used to
P: Physically active individuals motivator to continued physical activity promote engagement in physical activity
with SCI/D (n = 30) participation
• Exercise as progressive redemption may
motivate individuals to work towards
goals of improving function/
overcoming barriers (i.e.,
environmental)
(Continued)
Enhancing Healthcare and Rehabilitation
TABLE 9.1 (Continued)
Examples of Qualitative Studies Reflecting the Inquiry Stage of Knowledge Creation
Study Aim (A), Methods (M), and
Citation Participants (P) Key Findings Recommendation(s) for Future Research

Eglseder and A: To identify the lived experiences • Partners of people with SCI/D found • Qualitative research to explore gender & sexual
Demchick of intimate partners of aspects of SCI/D negatively impacted preference differences of intimate partners of
(2017) individuals with SCI/D related intimacy (e.g., taking a caregiver role, individuals with SCI/D
to sexuality physical characteristics, & fear of • Further evaluation of discomfort related to sexual
M: Education & Resource Needs causing injury) activity after SCI/D to inform future practice
checklist & semi-structured • Extreme discomfort was felt with • Investigate informational needs/training for healthcare
interviews, analysed using a resuming sexual activity providers related to sexuality
within-case analysis • Unmet needs with sexual education & • Explore effectiveness of individualised education
P: Partner of an individual with resource identified programs, mindfulness sexual interventions, &
SCI/D (n = 4) adaptations to enhance sexual comfort
Conti et al. A: Explore experiences of informal • Caregivers had implicit & explicit unmet • Understand problem-solving abilities of people with
(2016) caregivers during discharge needs during discharge transitions from disability to enhance the self-efficacy of patients &
transitions from SCI/D units SCI/D unit caregivers
M: Semi-structured interviews • Caregivers should be involved in • Consideration for caregiver involvement in current/
analysed using discharge planning future rehabilitation interventions & discharge
phenomenological methodology planning
P: Caregivers of individuals with
SCI/D recently discharged from
SCI/D unit (n = 11)
Espino et al. A: Explore unmet needs & • Unmet needs early post-SCI/D were • Investigate interventions targeting unmet needs (e.g.,
(2018) preferences for support of related to coping, navigating paediatric methods to provide comprehensive info to caregivers
caregivers of youth with SCI/D SCI/D services, & managing life after on navigating health system & community resources,
M: Focus groups discharge community support programs linking caregivers to
P: Caregivers of youth with SCI/D • Unmet needs in community included peer support)
living in USA (n = 26) navigating community services & • Qualitative data collection including more diverse care
Shaping Rehabilitation after Spinal Cord Injury: The Impact of Qualitative Research

managing care routines in the home settings

151
152 Enhancing Healthcare and Rehabilitation

SCI/D rehabilitation research (VanderKaay et al. 2018). The four themes identified through
our meta-synthesis (i.e., ‘(1) benefits of physical rehabilitation, (2) challenges of physical
rehabilitation, (3) need for support, and (4) issue of control’) resulted in recommendations
for future rehabilitation practices and policies that drive person-centred care (see Table 9.2)
(Unger et al. 2018c).
Divanoglou and Georgiou (2017) provide another example of a meta-synthesis result-
ing in recommendations for rehabilitation practice. They completed a meta-synthesis of
qualitative studies in order to determine the perceived effectiveness of community-based

TABLE 9.2
Recommendations for Healthcare Professionals Working in SCI/D Rehabilitation Derived from
Meta-syntheses
Unger et al. (2018c)
To assist clients to realise the benefits of rehabilitation:
• Focus on abilities rather than disability
• Provide opportunities to succeed to enhance confidence
• Encourage participation in activities valued by the client
• Find and use motivational factors
• Use verbal encouragement often and demonstrate dedication to rehabilitation
• Keep rehabilitation program meaningful
To assist clients in addressing the challenges of rehabilitation:
• Identify and advise about coping strategies
• Encourage discussion about and provide help through negative emotions
• Discuss realistic goals for recovery
• Education about condition, recovery trajectory, and timeline
• Maintain environment of respect and autonomy
• Work with individuals to plan community transition and address concerns
• Modify programs based on individual experiences
To effectively provide clients with support:
• Continually provide support and encouragement, include caregivers in rehabilitation
• Work together in a partnership
• Implement peer support and mentorship programs
To effectively provide clients with control:
• Plan to avoid taking control away from individual
• Allow decision-making to be done by the individual
• Encourage individuals to take control as they may not feel they are in a position to do so
• Maintain open and honest communication about goals
• Support choices made by clients and work together to achieve goals
Divanoglou and Georgiou (2017)
To create an effective peer-mentoring program:
• Include opportunities for both formal and informal mentorship in a dynamic, supportive, and flexible
environment to increase self-efficacy through peer observation
• Include peer mentors at different stages of recovery and with various injury characteristics and socio-
cultural backgrounds to act as credible resources and increase relatedness with individuals
• Facilitate peer mentorship to fill service gaps and promote factors that encourage positive outcomes in all
aspects of life post-SCI
Williams et al. (2014)
To facilitate a physically active lifestyle in clients:
• Understand relationships between benefits, barriers, and facilitators of physical activity
• Understand how SCI/D disrupts sense of self and exercise can redefine identity
• Identify ‘credible messengers’ to share information about exercise (i.e., benefits, how, and where to exercise)
Shaping Rehabilitation after Spinal Cord Injury: The Impact of Qualitative Research 153

peer-mentorship programs for individuals with SCI/D. Individual qualitative studies

involving interviews with mentees indicated that peer-mentoring increased the mentee’s
motivation, hope, self-confidence, and well-being (Beauchamp et al. 2016), and that the
unique support provided through peer-mentorship was a major support for the adjust-
ment to life after a SCI/D (Veith et al. 2006). The synthesis by Divanoglou and Georgiou
(2017) is timely as there is an increasing interest in the role of peer-mentorship in SCI/D
rehabilitation as a cost-effective and person-centred approach to education. This meta-
synthesis resulted in three analytical themes that describe the characteristics of effective
peer-mentorship, which may be interpreted as recommendations for community-based
peer-mentorship programs (see Table 9.2) (Divanoglou and Georgiou 2017). The meta-
synthesis strengthens the evidence provided by individual qualitative studies and sup-
ports the translation of knowledge about peer-mentorship into clinical practice.
Table 9.2 includes one other example of how a qualitative meta-synthesis can result
in tangible recommendations for SCI/D rehabilitation services. The meta-synthesis
by Williams and colleagues (2014) summarised the existing qualitative research that
examined the benefits, barriers, and facilitators of physical activity as perceived by
individuals with SCI/D (Williams et al. 2014). Through this review of 18 qualitative
studies, eight key concepts were identified and translated into three recommendations
for healthcare professionals aiming to promote physical activity amongst their clients
with SCI/D (see Table 9.2). The findings of meta-syntheses, such as those completed by
Hammell (2007b), Unger et al. (2018c), Divanoglou and Georgiou (2017), and Williams
et al. (2014), provide SCI/D rehabilitation professionals and services with tangible
recommendations that can be implemented into practice to strengthen the delivery of
evidence-based and person-centred care.

Knowledge Creation for SCI/D Rehabilitation:

Tool or Product Development
Findings from meta-analyses and meta-syntheses are used to create best practice guide-
lines, care pathways, clinical-decision making tools, and rehabilitation products. These
healthcare products reflect ‘third-generation knowledge’ (Graham et al. 2006) that is dis-
played in a user-friendly manner with the intention of influencing relevant stakehold-
ers, whether individuals with SCI/D, their families, healthcare professionals, or makers
of healthcare policy. Engaging the perspectives of relevant stakeholders in the develop-
ment of knowledge tools or products is beneficial, as consulting end-users will lessen
the gap between knowledge creation and clinical implementation (Boninger et al. 2012;
Musselman et al. 2018a).
For several decades, focus groups and interviews have been used to consult end-
users on the design of rehabilitation products and tools (e.g., Dijkers et al. 1991). More
recently, end-users have been included throughout the design process, with qualitative
methods being used for the collection and analysis of their perspectives. For example,
Allin and colleagues (2018) adopted a participatory design process in order to create an
online self-management program for individuals with SCI/D. The researchers first com-
pleted qualitative (i.e., semi-structured interviews) and quantitative (i.e., online survey)
studies to explore the desired characteristics of a self-management program from the
154 Enhancing Healthcare and Rehabilitation

perspectives of individuals with SCI/D, their families and managers from acute care
and rehabilitation hospitals (Munce et al. 2014a, 2014b). They learnt that individuals with
SCI/D would like self-management programs to be SCI-specific, peer-run, and online
(Munce et al. 2014a, 2014b). With this knowledge, a participatory design process was
initiated involving researchers (n = 7) and individuals with SCI/D (n = 9), who together
acted as co-designers and key informants to develop the online self-management tool
(Allin et al. 2018). To document the participatory design process, the group meetings
were audio recorded and the transcripts analysed through inductive thematic analysis.
The co-designers with SCI/D identified issues to consider throughout the design pro-
cess, such as evaluating the credibility of online information and valuing the expertise
of the SCI/D community. It was concluded that these contributions benefited the design
of the self-management tool, which is now being used and evaluated by Canadians with
SCI/D (Allin et al. 2018).

Putting Knowledge into Action

Once knowledge tools or products are established, there is a focus on clinical
implementation. The action cycle consists of the activities required to success-
fully implement the evidence-based and person-centred knowledge that has been
refined through the process of knowledge creation (Graham et al. 2006). The phases
of the action cycle are dynamic and influence each other, so although the phases are
presented in a specified order (see Figure 9.1), there is flexibility and variability in how
the action cycle proceeds.
In our experience, qualitative research can positively influence the translation of
knowledge from research to clinical environments at three phases within the action
cycle: adapting knowledge, assessing barriers, and evaluating outcomes (see grey
shaded phases in Figure 9.1). To illustrate this point, we will use examples from
our recent experiences with customising, implementing, evaluating, and refining
approaches to the assessment and training of walking function in a SCI/D rehabilita-
tion environment.

Action Cycle: Adapting Knowledge and Assessing Barriers

Adapting knowledge involves considering the added-value, usefulness, and appropri-
ateness of the knowledge, tool, or product, as well as modifying it for one’s local health-
care environment (Graham et al. 2006). An assessment of the barriers to knowledge
uptake may occur in tandem or following adaptation of the knowledge and should
also include the identification of facilitators that can be leveraged for the knowledge
translation effort. Quantitative methods, such as surveys with Likert scales, are often
used to identify the barriers and facilitators of knowledge use (Canadian Institutes
Shaping Rehabilitation after Spinal Cord Injury: The Impact of Qualitative Research 155

of Health Research 2010). When we used a mixed-methods approach to identify the

barriers to clinical use of functional electrical stimulation, however, we found that the
qualitative data provided more detailed insight into the perceived barriers and facilita-
tors than a quantitative rating scale (Auchstaetter et al. 2016).
To illustrate the role qualitative methodologies may play in the adaptation of
knowledge and assessment of barriers, we will use the implementation of a clinical
decision-making tool, the SCI Standing and Walking Assessment Tool (SWAT), as an
example. The SWAT resulted from an identified gap in clinical care; a scoping review
of the state of SCI/D rehabilitation practice in Canada identified a lack of guidelines
for the assessment of walking after SCI/D (Craven et al. 2012). To address this gap, the
Canadian Standing and Walking Measures Group was created consisting of SCI/D
rehabilitation researchers, expert clinicians, and representatives from the Rick Hansen
Institute (Walden et al. 2018). Through synthesis of pre-existing literature and clinical
expertise, the group developed the SWAT (Verrier et al. 2014). The SWAT is a staging
tool intended for use by physical therapists (see Figure 9.3). It standardises the timing
and content of walking assessment during inpatient SCI/D rehabilitation. Using the
SWAT, physical therapists determine a client’s stage of walking ability, which then
indicates which measures of balance (e.g., Berg Balance Scale, Mini-Balance Evaluation
Systems Test) and walking (e.g., Ten-meter Walk Test, Six-minute Walk Test, modified
Timed Up and Go) to complete. Following its development, the SWAT was implemented
by physical therapists at nine rehabilitation hospitals in Canada (Walden et al. 2018). To
support implementation, the Canadian Standing and Walking Measures Group sought
to understand the acceptance, challenges, and facilitators of using the SWAT at each
rehabilitation facility, the ‘Adapt Knowledge’ and ‘Assess Barriers’ stages of the KTA
framework (see Figure 9.1). To achieve this understanding, we completed focus groups
with physical therapists from each rehabilitation site who were using the SWAT in
their clinical practice (Musselman et al. 2017). Semi-structured interview questions
queried the clinicians’ perceptions and experiences with the SWAT stages, specifically,
the appropriateness of the content and the barriers and facilitators to the tool use
(Musselman et al. 2017). Although some facilitators and barriers were site-specific,
there were also similarities across rehabilitation sites. For example, a facilitator was the
appreciation of objective standardised outcome measures (see Figure 9.3). Another was
the flexibility to adapt the process of staging to fit one’s local environment. Physical
therapists spoke of customised strategies to integrate SWAT staging into their clinical
routines. High caseloads, short inpatient lengths of stay, and a lack of time were com-
mon systems-level barriers experienced by the therapists. A lack of familiarity with the
staging tool was also identified as a barrier by many participants.
Through identification of the barriers to clinical implementation of the SWAT, the
Canadian Standing and Walking Measures Group identified strategies to address these
barriers. For example, a standardised training workshop on how to administer the SWAT
was developed and delivered (Musselman et al. 2017), and webinars concerning the SWAT
outcome measures were provided to the therapists in order to address the lack of famil-
iarity with the tool. This study is an example of how qualitative research can be used to
facilitate the processes of adapting knowledge for a given clinical environment, as well
as addressing the barriers to knowledge uptake, which are both important phases of the
action cycle.
156 Enhancing Healthcare and Rehabilitation

FIGURE 9.3
The SCI Standing and Walking Assessment Tool (SWAT) (middle). Quotes reflecting facilitators and barriers of
clinical implementation of SWAT on left and right sides, respectively. Descriptors for sub-stages are as follows:
1A = no lower extremity movement; 1B = voluntary non-functional lower extremity movement; 1C = voluntary
functional lower extremity movement; 2A = maximum assist; 2B = moderate assist; 2C = minimum assist;
3A = supervised household ambulator; 3B independent household ambulator; and 3C = community ambulator.

Action Cycle: Evaluating Outcomes

After knowledge has been adapted for a specific clinical environment and implemented by
the end-users, the outcomes of this implementation are evaluated. The evaluation phase of
the action cycle involves determining whether the implemented knowledge, tool, or prod-
uct has resulted in a positive impact on the health of the target population, the clinicians,
and/or the healthcare system (Graham et al. 2006). Standardised, quantitative measures
of physical function, quality of life, and health economics may be used for this purpose,
however, understanding of the impact is limited to the variables measured. Qualitative
research methodologies enable documentation of unexpected benefits as well as those per-
ceived to be meaningful to the study participants.
Retraining the ability to walk, also known as locomotor training, after SCI/D is a topic
that has been extensively researched over the past three to four decades. Many studies
demonstrated improvements in standardised measures of walking ability after individu-
als with motor incomplete SCI/D participated in intensive locomotor training programs
(Lam et al. 2007; Yang and Musselman 2012). Typically, these programs include a com-
bination of body weight-supported treadmill training and overground walking practice,
however, functional electrical stimulation and robotic devices, such as the Lokomat®,
Shaping Rehabilitation after Spinal Cord Injury: The Impact of Qualitative Research 157

have been used as therapy adjuncts to facilitate walking practice. Evidence to support the
benefit of locomotor training after motor incomplete SCI was sufficiently strong that the
NeuroRecovery Network was established in the United States to standardise the delivery
of locomotor training, collect national-level data, and provide individuals with traumatic
spinal injuries with an evidenced-based intervention for the rehabilitation of walking
(Harkema et al. 2012). At our facility in Canada, we implemented a modified version of
the NeuroRecovery Network locomotor training program, called personalised adapted
locomotor training (PALT) (Singh et al. 2018c). Like the NeuroRecovery Network program,
PALT consisted of body weight-supported treadmill training combined with overground
practice in each session, however, in PALT, the content of overground training was custom-
ised to each client’s goals and rehabilitative needs. Overground training may have involved
therapy targeting walking, balance, transfers, trunk control, or upper limb function. This
emphasis on customisation of therapy content enabled a person-centred approach.
Although evaluation of the impact of locomotor training programs has traditionally been
completed with quantitative measures, a few evaluation studies have adopted qualitative
methodologies as well (Nymark et al. 1998; Hannold et al. 2006; Bowden et al. 2008). In our
experience with PALT, we found that a full understanding of the benefits of the program
was not achieved until data derived from both qualitative and quantitative methods were
obtained. We evaluated the outcomes of the PALT program in seven individuals with sub-
acute AIS C or D SCI/D. Of these first seven participants of PALT, all but one showed clini-
cally relevant improvements in walking speed and endurance (Chan et al. 2017). Through
the semi-structured interviews, participants reported physical and psychological benefits
that extended beyond the function of walking (Singh et al. 2018c). They reported that the
PALT program facilitated their transition from inpatient rehabilitation to community liv-
ing and gave them the confidence to self-manage their rehabilitation. Similarly, the partici-
pant that did not regain walking function through PALT reported that the program gave
her confidence in her ability to cope with life after SCI/D:

It gave me a lot of confidence, doing all of these sessions. Before I started I was really
nervous about how am I going to cope at home, even if I do have my husband there? He
can’t be there 24-7, that’s not healthy for him, so how on earth am I going to dress myself
or be able to reach to get something, or do the dishes or whatever? After the program,
I have no qualms about going home. I feel much stronger, I feel more confident.

Through PALT, this participant gained more independence in transfers, dressing and
self-care, and required less assistance from her caregivers. These insights would not have
been revealed through the quantitative data alone.
We followed up with the PALT participants 1 year after they completed the program.
The quantitative measures of walking ability showed retention of walking gains, however,
data from the semi-structured interviews highlighted some struggles since discharge from
PALT (Singh et al. 2018b). For example, there were reports of depressed mood, falls caus-
ing injury, and difficulty accessing rehabilitation services in the community, either due to
cost or the perceived poor quality of these services. Although participants reported that
some aspects of their lives were going well (e.g., three participants had returned to work),
there was a consistent view amongst participants that recovery is never complete. These
qualitative analyses enabled reflection on the impact of PALT on the lives and well-being
of participants, providing a more in-depth understanding of the intervention’s effects.
The two qualitative evaluations of the PALT program also highlighted opportunities
for program improvement based on the experiences and perspectives of the participants
(Singh et al. 2018b, 2018c). Tangible recommendations for the PALT program are outlined in
158 Enhancing Healthcare and Rehabilitation

TABLE 9.3
Recommendations for PALT
During PALT
Provide education on self-management of rehabilitation
• E.g., instruction on how to exercise in community gym
• Comprehensive home exercise program
Provide greater focus on transferring skills practiced in PALT to regular environments
• E.g., practice walking outdoors
Provide education on fall prevention
• E.g., discuss behavioural strategies and relevant assistive equipment to reduce fall risk
Provide a gradual discharge from PALT
• E.g., gradually reduce frequency of sessions from 4 sessions/week to discharge over the month prior to
discharge
Provide a flexible program structure
• E.g., vary proportion of session spent on treadmill vs overground according to client’s needs and
preferences
After PALT
Provide routine follow-up after discharge to monitor psychological and physical health
• E.g., follow-up phone calls to monitor progress and screen for declines in mental health
Link client to community resources, as appropriate
• E.g., wheelchair accessible gym, community physical therapists/exercise trainers
Source: Singh, H. et al., Spinal Cord Ser. Cases, 4, 6, 2018; Disabil. Rehabil., 40, 820–828, 2018.

Table 9.3. These recommendations likely apply to locomotor training programs for individ-
uals with SCI/D in general. We have implemented some of these recommendations in an
effort to improve the training experience for individuals with SCI/D. We recently reported
a case study involving PALT for an individual with paralysis due to West Nile neuroinva-
sive disease (Unger et al. 2018b). The knowledge gained from the semi-structured inter-
views with previous PALT participants was applied in this case. For example, the structure
of the PALT program was flexible, the order of treadmill training and overground therapy
varied depending on the preference of the client each day, and some training sessions
involved only one training mode. Further, the amount of time spent in overground train-
ing increased mid-way through the program as the client regained the ability to ambulate
independently and her goals for PALT changed (Unger et al. 2018b).
There are other examples of how qualitative research contributes to the evaluation of
intervention outcomes in SCI/D rehabilitation. Curtis and colleagues (2015) evaluated par-
ticipant (n = 6) experiences and satisfaction with a modified yoga program using a mixed
methods approach: self-report questionnaires and individual semi-structured interviews
analysed through content analysis. Insignificant changes in health and well-being were
found in the surveys after program completion, however, the qualitative results revealed
that the intervention was positively regarded by participants, as it supported personal
growth beyond symptom reduction. Participants provided specific recommendations
for program improvement, for example, regarding the frequency and duration of classes
and variety of postures. Hence, qualitative data provide evidence of the effectiveness of
an intervention or program that has been implemented and suggest areas for program
improvement to support continued implementation.
The evaluation of implementation initiatives applies to healthcare policy as well as
rehabilitation interventions. Recently, we studied hospital administrators’ experiences
with fall prevention policies in SCI/D rehabilitation environments in an effort to evaluate
Shaping Rehabilitation after Spinal Cord Injury: The Impact of Qualitative Research 159

the policies’ strengths and shortcomings (Singh et al. 2018a). Transcripts from semi-
structured interviews were analysed with interpretive description. Identified strengths
included improved client safety, increased staff awareness of fall prevention, and learn-
ing opportunities for clients, however, administrators reported challenges such as bal-
ancing the prevention of falls with the need to increase mobility, inconsistent compliance
with the fall prevention policy on the part of the front-line staff, and some clients’ impul-
sive behaviour. To translate this knowledge, we presented a summary of our findings
and recommendations to administrators and policymakers. Presenting research findings
in the form of recommendations informed by the study findings and previous literature
may lead to greater uptake in clinical practice. In our experience with this study, admin-
istrators were eager to receive the executive summary to integrate our research findings
into quality improvement of their policies. Ongoing evaluation and quality improvement
were brought up as important components to fall prevention in SCI rehabilitation.

Future Directions of Qualitative Research to Inform SCI/D Rehabilitation

The generation of qualitative research is rapidly increasing in the area of rehabilitation
(VanderKaay et al. 2018). As this research field grows, there is an opportunity to expand and
refine its role in evidence-based and person-centred care. We expect the nature of qualita-
tive research into SCI/D rehabilitation to evolve in several ways. First, we expect research-
ers will engage a variety of stakeholders early in the research process (Musselman et al.
2018b). By involving individuals with SCI, caregivers, healthcare professionals, funders, and
policymakers, a broader perspective on an issue will be obtained. This broader perspective
may more effectively meet the needs of those delivering and receiving health services.
Second, we expect that clinicians, healthcare administrators, and policymakers may
require some guidance in how to interpret qualitative research findings and when and how
to implement the findings. Prior to implementing qualitative research into practice, health-
care stakeholders should consider how thoroughly the findings are described and how
comprehensive and relevant the conclusions are (Giacomini and Cook 2000). Clinicians
should also think about their individual practice and clients (Giacomini and Cook 2000):
Is the study appropriate in their specific healthcare context? Can the study findings help
them to optimise care? Do the study findings help them to understand their interactions
and relationships with clients and their families?
Third, we expect that multiple data sources will be increasingly used in qualitative SCI/D
research. Data triangulation is an approach used to strengthen and enhance the reliability of
findings in qualitative research studies (Denzin 1978; Patton 1999). Researchers gather multiple
qualitative data sources (e.g., interviews, observations, documents) to test for the consistency of
the findings across sources (Patton 1999). We employed data source triangulation in the study
examining administrators’ experiences with fall prevention policies (Singh et al. 2018a). We
combined semi-structured individual interviews with a document review (i.e., hospitals’ falls
policies) to strengthen the reliability of our findings. By combining these two data sources,
a more comprehensive understanding of the problem was investigated. The inconsistencies
amongst the data sources provided us with opportunities to probe further, and we identified
gaps in policy (through the document review) and in clinical practice (through interviews).
Data source triangulation is a means to enhance SCI/D qualitative research, particularly in
evaluations of programs, processes, and interventions.
160 Enhancing Healthcare and Rehabilitation

Fourth, we expect to see increased integration of qualitative and quantitative research

findings. In this chapter, we have illustrated how qualitative methods can address limita-
tions of quantitative research, however, limitations of qualitative research exist as well.
Qualitative research studies typically involve a small number of study participants, which
limits the generalisability of the study results (Hammell 2007a). As well, there may be
perceptions of researcher bias being present in qualitative data due to the interpretive and
subjective nature of qualitative data analysis (Hammell 2007a). In contrast, well-designed
quantitative research studies are adequately powered to address the study objectives and
utilise objective approaches to data analysis. Hence, qualitative and quantitative research
methods complement one another, and we expect usage of mixed-methods in SCI/D reha-
bilitation research to rise (VanderKaay et al. 2018).
Fifth, we expect to see greater innovation in the translation of research knowledge into
clinical practice. Effective knowledge translation involves communicating research knowl-
edge in a way that is tailored to the appropriate audience, and arts-based approaches are fea-
sible methods to convey research knowledge (Canadian Institute for Health Research 2012,
2016). Arts-based approaches in knowledge translation are becoming increasingly popular
in rehabilitation and health research (Rieger and Schultz 2014; VanderKaay et al. 2018), as
these can be quick and easy avenues to share knowledge, stories, and emotions explored
through qualitative research. In our own study using photovoice methodology, participants
share their stories through photographs to relevant stakeholders (i.e., others with SCI/D,
clinicians, and administrators working in SCI/D rehabilitation) to raise awareness of the
impact of falls on the everyday lives of those with SCI/D. Through this event, we also hope
to influence clinical practice change in rehabilitation to include a greater focus on fall preven-
tion. This is now acknowledged by the Canadian Institute for Health Research (2012), which
cites arts-based approaches as a feasible option for the dissemination of research findings.
In summary, qualitative research findings make valuable contributions to the rehabilita-
tive care of a heterogeneous and complex condition like SCI/D. As qualitative methods are
increasingly used throughout the translation of knowledge to action, an evidence-based
and person-centred approach to care will be achieved.

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10
Hand Injuries and Disorders during the
Life Cycle; Consequences, Adaptation
and Therapeutic Approach

Ingela K. Carlsson, Anette Chemnitz and Lars B. Dahlin

CONTENTS
Introduction ................................................................................................................................. 167
Emotional Reactions and Stress Factors .................................................................................. 168
Appearance-Related Concerns and Body Image.................................................................... 169
Activity, Participation, and Health-Related Quality of Life.................................................. 170
Impact on Relations and Life Roles .......................................................................................... 172
Adaptation to Challenges in Daily Life ................................................................................... 173
Decision-Making Process and Patients Expectations ............................................................ 175
Patient Satisfaction and Appraisal of Results ......................................................................... 176
Adherence – Client-Centred Practice ....................................................................................... 178
Discussion .................................................................................................................................... 180
Overview ...................................................................................................................................... 180
References .................................................................................................................................... 181

Introduction
Qualitative research is crucial and has enriched the field of hand surgery and hand reha-
bilitation. Different qualitative methods can describe the complex nature of human expe-
rience in health and disease and contribute to a deeper understanding of how patients
perceive the impact of hand injuries and disorders on all levels outlined in the International
Classification of Functioning, Disability and Health (ICF) (World Health Organization
2001). The experience related to the consequences of a congenital condition, disease or
trauma, the adaptation to lost capabilities, valued occupations or life roles, the importance
of personal resources, and support has been highlighted in various qualitative studies in
the field of hand surgery and rehabilitation, as well as the need for healthcare professionals
to embrace a holistic approach when supporting patients’ adaptation. Furthermore, quali-
tative research has deepened the knowledge concerning influencing factors for patient and
caregiver interaction and patient-centred practice. By embracing new insights and a deep-
ened understanding in how a hand injury/disease may influence a person’s whole life, the
therapeutic approach can be developed in accordance with patients’ needs.
The results from qualitative research have also been used as a knowledge base when
creating patient rated outcome questionnaires (PROMs) and formed a base for quantita-
tive studies in larger populations, including national health quality registries (hakir.se).
167
168 Enhancing Healthcare and Rehabilitation

To explore patients own experiences may also shed new light on findings from earlier
quantitative studies and serve as an inspiration when finding new ways of addressing
research (Carroll and Rothe 2010). It has been pointed out that human experience can-
not be understood by reductionism, i.e., meaning, only by identifying and examining its
parts. Meaning in human experience is derived from an understanding of individuals
in their social environment. Whatever we learn is going to be shaped by our own con-
structed perspective when we learn about patients experiences (Chan and Spencer 2004).
Quantitative and qualitative studies produce different levels of meaning, but integrating
these approaches can benefit in defining a more complete picture of complexity and mean-
ing in, e.g., living with a hand injury or hand disorder. Our aim is to illustrate a selection of
areas in which qualitative studies have contributed to an important and deepened knowl-
edge base in the field of hand surgery and hand rehabilitation. Unless otherwise stated,
the following chapter includes the results from solely qualitative studies, which represent
different methods of analyses, such as phenomenology, grounded theory, content analy-
ses, or mixed methods or articles reflecting over qualitative research.

Emotional Reactions and Stress Factors

Different emotional reactions, such as anger, frustration, guilt, jealousy, and blame, have
been expressed by parents of children with a congenital upper limb difference. These initial
grief-related emotions were primarily related to an initial sense of a loss of ‘normality’
for the children’s lives. Worries about how the child would cope with challenges, such as
teasing and curiosity, occurred and an uncertainty about how to maximise and promote
children’s development of self-esteem (Murray et al. 2007). Receiving the diagnosis of a
brachial plexus birth injury (BPBI) in a child can also create much anger and a lifelong dis-
tress in parents and has been described to have an impact also on siblings, as explored in a
large national quantitative study using registries (Psouni et al. 2018). Therefore, treatment
of conditions leading to lifelong disabilities, such as BPBI and cerebral palsy, should include
the whole family (Beck 2009, Bellew and Kay 2003).
Persistent nightmares and flashbacks caused by the shock of trauma have been described
in long-term follow-up of nerve injuries sustained in adolescence. Depressive symptoms, e.g.,
sadness, darkness, hopelessness, a sense of bitterness, frustration, and anger, are men-
tioned, but also a sense of grief over the hand and the life as it used to be before the
trauma. This could even give rise to an identity crisis expressed as ‘I became the injury’
(Chemnitz et al. 2013). Struggling with symptoms, such as anxiety, depression, and post-
traumatic stress disorder, are also expressed in which the lived experience of a hand nerve
disorder are in focus and explored in a constructed grounded theory study (Ashwood
et al. 2017). Recalling the events of a burn injury to the hand gives rise to similar emotions
typical of post-traumatic response in an early acute phase of the injury (Dunpath et al.
2015). Patients suffering from an acquired upper limb amputation may also suffer long-term
psycho-social problems (Saradjian et al. 2008) as concluded in a qualitative metasyntheses
article. Greater use of psychological interventions and education, involvement of patients’
social support, and use of psychotherapy were here highlighted as key implications for
rehabilitation (Murray and Forshaw 2013). The emotional reaction linked to the loss of a
limb has been compared to a similar grief process of losing a spouse, including an initial
shock, denial, and numbness followed by anxiety and depression, before the person was
able to adjust (Parkes 1975).
Hand Injuries and Disorders during the Life Cycle 169

Several stress factors in the early stage of an acute traumatic hand injury have also been
explored (Gustafsson et al. 2000). The trauma experience includes examples of involun-
tary recollection and re-experience of the trauma, impaired functioning, practical prob-
lems with daily activities, dependency on others, involuntary inactivity, uncertainty about
function in the future, and pain experience (Gustafsson et al. 2000).
Depressive mood state is described for patients suffering from rheumatoid arthritis (RA),
especially apparent when symptoms are more persistent, but also in the early stage of the
disease when feelings of uncertainty about the future exist. Anger is also expressed when
experiencing occupational limitations or when pain and fatigue cause a sense of helpless-
ness. A sense of fear or insecurity about the future or disease process is also expressed
(Lutze and Archenholtz 2007). Misuse of drugs in combination with worse mental health
has been highlighted amongst patients with BPBI based on extensive data from national
registries (Psouni et al. 2018), an interesting topic to further explore in depth in a qualita-
tive study.
To embrace a holistic approach addressing crisis reactions, emotional needs, and stress
factors as described in the qualitative studies mentioned above, may be paramount to the
patients’ recovery and future outlook. To screen for early symptoms of post-traumatic
stress provide an empathetic and understanding approach, and early psychological sup-
port for those in need is highly emphasised. The support given should also include the
needs for close family members. Patients with access to few coping strategies should be
recognised.

Appearance-Related Concerns and Body Image

Appearance-related concerns, and their psycho-social consequences, are important to
consider following different hand disorders or injuries (Dunpath et al. 2015, Kelley et al.
2016, Saradjian et al. 2008). Hands are difficult to conceal, always visible to the patients,
and to those with whom they interact. Hands have personal significance, are important
for an individual’s self-concept, and affect how we are perceived by others. Hands are
also important for human interaction, non-verbal communication, and social integra-
tion. The long-term psychosocial effect of being visibly different is described in an induc-
tive, semi-structured interview study of a group of patients being born with a congenital
malformation in the upper extremity. The emotional reactions to the visible difference
vary from total acceptance and a sense of pride in being special, to deep distress and
social withdrawal (Carlsson et al. 2018). Changes in appearance gained through upper
extremity surgery in patients with a hemiplegic hand in cerebral palsy are highly valued.
How participants viewed aspects of appearance varied with age and changes could affect
self-esteem. The overall impression, such as body position when walking, sitting, and per-
forming activities, after upper extremity surgery is of major importance as highlighted
both in quantitative and qualitative research (Dahlin et al. 1998, Skold et al. 2007).
Struggling with a visibly different ‘claw’ hand deformity and the scars from the injury
are also mentioned as the feeling of self-consciousness associated with an ulnar nerve injury
(Ashwood et al. 2017). Appearance-related concerns following an amputation injury to the
upper limb may affect self-image and confidence in social situations. A greater emotional
sensitivity may also lead to a hyper-vigilance to reactions from others, especially in the
early stages, as found in interpretive phenomenological analyses (Saradjian et al. 2008).
170 Enhancing Healthcare and Rehabilitation

However, the severity or extent of a disfigurement is not always related to the degree of
emotional distress and appearance-related concerns. It is rather the perception of how
noticeable the difference is to others that seems to be more relevant. A habitual pattern of
hiding the hand is frequently described. On the other hand, some choose to expose the
injured or malformed hand to open up to questions from others. Hiding the hand is con-
sidered to draw more attention to it and could therefore be considered counterproductive
(Carlsson et al. 2018). Patients with forearm amputations and their views of prosthesis use
and sensory feedback show that appearance is important for identity and blending into
society and sometimes the main reason for wearing prosthesis. The feeling of agency, i.e.,
feeling authorship of bodily ownership, is present, but not that of body ownership, which
is defined as the experience of body parts as one’s own. The lack of sensory feedback is
considered as an important factor, still blocking the achievement of body ownership (Wijk
and Carlsson 2015).
The visible difference after an amputation of a limb may have a profound psychological
impact as well as affecting the person’s perception of body image. Mirror viewing can be
used as a tool when adapting to a new body and includes viewing one’s own body in a
mirror, and viewing the affected or missing limb, in different sizes of mirrors. The effect
has recently been explored in focus groups of patients suffering from amputation to the
arm or leg. The phenomenological interpretation yielded a description of mirror trajec-
tory, which contains the experience of a profound initial shock, followed by feelings of
anguish. Recognising self is possible in a full-length mirror and includes a focus on miss-
ing parts, positive thoughts, and whole body symmetry. The acceptance of a new normal
is facilitated by mirror viewing, but to integrate the amputation into a sense of identity
is explained as a long-term, cyclic process. It is stressed that nurses or therapists need to
have the right attitude and adequate training to be able to prepare and deal with the emo-
tions that the patient may experience, and when needed, refer the patient to a psychologist
(Freysteinson et al. 2017).
The need for healthcare professionals to address appearance-related concerns is high-
lighted in qualitative research, adding new insights into the long-term emotional distress
and social consequences of a visible difference.

Activity, Participation, and Health-Related Quality of Life

The impact of a hand injury or disorder on activity and participation has been a fre-
quent focus in qualitative research (Ammann et al. 2012, Bromann Bukhave et al. 2014,
Carlsson et al. 2018, Chemnitz et al. 2013, Engstrand et al. 2016, Hansen et al. 2017, Wilburn
et al. 2013). In ICF, body functions are the physiological functions of the body, activity is
defined as the execution of a task or action by an individual, and participation is involve-
ment in a life situation (World Health Organization 2001). However, the terms activity
and participation are highly interrelated. Patients with osteoarthritis in the hand experience
participation restrictions in their everyday lives and activity limitations as an aspect of
participation, which implies that participation in everyday life seems complex. Important
for subjective meaning-making is, what to participate in, how to participate, and with
whom (Bromann Bukhave et al. 2014). To extract definitions of the term participation, a
deductive content analyses was used, followed by interviews with patients and experts.
It is concluded that the domains, included in the ICF, are not comprehensive enough to
Hand Injuries and Disorders during the Life Cycle 171

conceptualise participation. This limitation can hinder measuring disability and health
(Farzad et al. 2017). There has lately been a frequent use of the additional concept, ‘social
participation’. A change in ICF’s definition of participation towards social roles has also
been suggested in a discussion article, which makes a synonymous use of the two concepts
possible (Piskur et al. 2014). Within occupational therapy practice and in the Canadian
Model of Occupational Performance and Engagement (CMOP-E), the word occupation is
the core concept. Occupations (self-care, productivity, leisure) are defined as groups of
activities and tasks in everyday life. Occupational performance is the result of a dynamic
interwoven relationship between the person, the environment, and the occupation and
refers to carrying out of an occupation. The regular and predictable ways of doing this are
considered occupational patterns (Townsend and Polatajko 2007). Although, some differ-
ences in terminology exist, both ICF and CMOP-E point to the importance of the interac-
tion of person and environment for human functioning (Townsend and Polatajko 2007).
The use of different terminology is reflected in qualitative research, aiming at describing
consequences for the individual in their daily life.
Qualitative research improves our understanding and knowledge about the quality of
life for the whole family, not only for the single patient. Adolescents suffering from a BPBI
report a good overall quality of life, whereas the parents, struggling with feelings of guilt,
do not share the same experiences as their child (Squitieri et al. 2013). Evaluation of inter-
ventions can be more comprehensive by including the close family as well as the patient.
Children, who are treated for congenital hand differences, and their parents describe difficul-
ties with personal care, school activities, and household tasks. Complex anomalies are asso-
ciated with greater disability and limitations in sports and music. It is discouraging for the
children to experience the difference in abilities compared with their peers, but with increas-
ing age, an adaptive behaviour is demonstrated. It is emphasised that early hand therapy
guided towards areas of concern may enhance functional adaptation (Kelley et al. 2016).
To fall behind with schoolwork and experience limitations in practical school subjects,
such as drawing, crafts, and physical training, is a reality for some of the patients with a
nerve injury sustained in adolescence. The consequences can also influence the participants’
choice of profession. For those who cannot follow their chosen path, a sense of sorrow
is expressed. For others, the injury causes no hindrance. Playing a guitar or tennis are
leisure activities no longer possible, since numbness, muscular cramp, or tiredness affect
the performance. Fishing, hunting, or playing hockey is problematic for those with
cold sensitivity, whilst others experience no problems with skating or skiing (Chemnitz
et al. 2013). Activity limitations affected by an irreversible ulnar nerve paralysis are, e.g.,
holding soap, eating, buttoning, holding a glass, and lifting small objects. Affected areas
are mobility – carrying, moving and handling objects, self-care, domestic life; major life
areas – employment and community, social and civic life (McCormick et al. 2008).
Practical and psychological aspects of enhanced independency after grip reconstructive
surgery in patients with tetraplegia is described in an interview study. Surgical interventions
have an impact on all domains in the ICF and self-efficacy in hand control is pointed out as
an essential factor to promote during the rehabilitation process (Wangdell et al. 2013).
Facing an inability to perform most occupations independently in the early post-operative
phase of a hand injury causes frustration and tempered mood. Single-handedness, whilst
wearing a splint on the injured hand, affects independence. Furthermore, the time con-
suming experience when trying to perform activities is an incisive and disillusioning
experience. After a long period of occupational disruption, a strong will for normality is
evoked. Being able to drive is regarded as an example of return to ‘normal independence’
(Ammann et al. 2012).
172 Enhancing Healthcare and Rehabilitation

Patients suffering from symptoms of severe cold sensitivity following a traumatic hand injury
experience that the engagement in meaningful occupations at work, at home, or during leisure
and social activities are influenced or limited. Handling groceries from the refrigerator or
freezer, cutleries, glass, vacuum cleaner, door handle, steering wheel, or key board trigger
cold-induced symptoms. The exposure to water, when hanging up wet laundry, peeling
potatoes, or cleaning the windows, causes problems. Even night sleep and social activities
can be affected because of exposure to temperature, draft, ventilation, or air conditioning.
Participating in outdoor activities, such as hunting, skiing, transportation, washing the car,
bedding plants, or doing repair work, causes long-lasting discomfort, which exacerbate
problems with overall hand function. Outdoor jobs, involving extensive cold exposure, and
mittens or gloves hinders dexterity or fine motor skills. The exposure to cold objects or cold
from air ducts can limit work capacity for those working indoors (Carlsson et al. 2010).
For patients with Dupuytren’s disease with contracture in the hand, limitations of activ-
ity includes shaking hands, gripping/holding/opening, carrying, lifting, personal care,
dressing, writing, jobs around the house, employment, and hobbies (Engstrand et al.
2016, Wilburn et al. 2013). Patient and expert interviews were used to generate similar
items included in the Unité Rhumatologique des Affections de la Main (URAM) scale
(Beaudreuil et al. 2011). Unstructured interviews subjected to content analysis and themes
related to the needs-based model of quality of life show that the impact of Dupuytren’s
disease on quality of life fall into the categories of physiological, safety/security, social,
affection, esteem, and cognitive needs. (Wilburn et al. 2013).
To be as active as possible in leisure activities is important for patients with RA, although
limitations in the choice of activities are experienced. Most activities take more time and
leave less time for leisure. The need of finding a balance between activity and rest and
between active and passive activities is expressed. To find satisfaction in activities that
they do manage to carry out is necessary and important for self-confidence. Being depen-
dent of others is hard to accept. Participating in a social context, sharing activities with
friends is also expressed as a necessity (Wikstrom et al. 2005).
A detailed knowledge about which activity limitations and participation restriction
patients with various hand-related diagnosis generally may face can guide the surgeon,
therapists, and patient when setting realistic treatment goals. It may also serve as basic
knowledge when identifying effective problem-solving strategies, e.g., creating specific
information booklets containing ergonomic advice, compensatory measures, such as
change of handedness, assistive devices, or alterations in occupational performance or
occupational patterns.

Impact on Relations and Life Roles

Having a child with a BPBI requires long-term care and will impact the whole family. The
psychological burden for caregivers is recognised by qualitative analysis, and the parental
experiences do not seem to correlate to the severity of the injury (Bellew and Kay 2003).
Other factors, such as lack of adequate information initially or mistrust of the healthcare
system, influence how the parents adapt to the situation and deal with time-consuming
long-term therapy and surgeries as described in a phenomenological study (Beck 2009).
Approaching the other sex can be a scary adolescent experience for some when
being born with a congenital anomaly, even when treated with empathy and respect.
Hand Injuries and Disorders during the Life Cycle 173

However, over time, when the visibly different hand is accepted internally, that feeling
diminish. ‘A girl I met held my hand and felt that something was different, but she didn’t care,
she just squeezed my hand tight, calmed my fear, accepted it, and then I felt that my self-confidence
came back to me knowing that girls could like me despite my hand’ (Carlsson et al. 2018).
Intimacy is affected in a variety of ways as expressed by patients following a nerve injury
in adolescence and consequently also the role as a spouse. The altered or loss of sensibility
causes an awareness of the use of the uninjured hand whilst caressing or holding hands.
To choose the ‘right side’ in bed affects spontaneity and intimacy for some participants
(Chemnitz et al. 2013). The physical and psychological consequences of a disease or trauma
to the hand may cause stress and an increased risk of conflicts between partners. On the
other hand, support and empathy from spouses may also lead to positive changes and a
closer, more intensive relationship (Coenen et al. 2013).
Profound degree of change in ability to perform satisfactorily in life roles, such as a
spouse, caregiver, and worker, is described after an acute hand injury (Schier and Chan 2007).
This is also a consequence as experienced by patients living with severe cold sensitivity
following a severe hand injury. Occupations that are normally performed as part of the role
as a spouse are avoided because of symptoms from cold exposure. This leads to a shift in
roles, when, e.g., taking care of wet laundry, cleaning, or gardening. Outdoor activities,
such as fishing or walking in the woods and fields, are activities that enrich life and play
an important part in social interaction with friends and family. Inability to take an active
part in such activities with, e.g., own children give rise to a sense of inadequacy and alter
the perception of being an active parent. A struggle to maintain self-image, when facing
dependency and altered life roles, requires inner strength and reorientation. Loss of work
tasks because of cold exposure is distressing for some patients, since a sense of complete-
ness in the work role is lost. However, other patients simply consider changes as rational
measures for earning a living (Carlsson et al. 2010).
A change in role position in the family is also described by patients with RA when
experiencing inabilities to perform daily activities. To lose a work role is especially painful
for male participants. Female patients are more concerned about inabilities to carry out
household chores, whilst male patients with RA complain over loss of ability to perform
heavier tasks in the family (Lutze and Archenholtz 2007).
Taking into consideration, the patients’ different life roles and occupational patterns
are important when supporting patients’ adaptation. Embracing a top-down philosophy,
which starts with an inquiry into role competency and meaningfulness and continues by
determining which particular tasks that define each of the roles may here facilitate a more
holistic approach (Weinstock-Zlotnick and Hinojosa 2004).

Adaptation to Challenges in Daily Life

Adaptation to challenges in daily life is richly described in qualitative studies and for
different groups of hand injuries or disorders (Ashwood et al. 2017, Carlsson et al. 2010,
2018, Cederlund et al. 2010, Gustafsson et al. 2002). Both emotion-based and problem-
based coping strategies are represented and vary depending on the challenges patients are
facing. To compensate for altered or loss of sensibility, decreased grip strength and dexter-
ity, numbness, pain, and cold sensitivity, patients with nerve injuries use adaptive strategies,
such as vision, non-injured hand/fingers, tricks, assistive devices, and warm gloves/water.
174 Enhancing Healthcare and Rehabilitation

Social support, dissociation, minimisation, avoidance, acceptance, and to hide or cover up

are important strategies when facing emotional reactions to the trauma. During the period
of education, assistive devices, information, and support by teachers and schoolmates play
an important role, as well as oral, instead of written, tasks or examination. When it came to
professional life, it is important to have realistic career plans. Some avoid difficult occupa-
tions, whilst others develop new skills or change their performance pattern. Whilst man-
aging daily life and the role as a spouse or parent, an open communication, asking for
help, and the use of assistive devices is helpful. To develop new interests or avoid leisure
activities that increase or risk symptom severity, is also highlighted (Chemnitz et al. 2013).
For patients with a nerve disorder in the hand, there is a process of struggling and
overcoming followed by an internal process of psychological adaptation or acceptance.
Eventually, a transforming process takes place when being changed as a result of the
journey they experience. The influence of the nerve disorder is related to patients’
type of personality and pre-existing coping strategies. Furthermore, the process of
struggling and overcoming is not only experienced by the patient, but also partners,
family, and employers are affected, which emphasises the social nature of adaptation
(Ashwood et al. 2017).
Several different coping strategies are also used to manage specific stress factors
following acute hand injuries, such as comparing with something worse, positive thinking,
relaying on personal capacity, distancing, distracting attention, accepting the situation,
seeking social support, maintaining control, solving practical problems by oneself, pain
relieving strategies, and active processing of the trauma experience (Gustafsson et al.
2002). To enable performance in daily occupations 3 months after a severe or major hand
injury, the following strategies are described, changing performance of daily occupations,
actively processing trauma experience, changing occupational patterns, receiving
assistance, using emotional strategies, and keeping up a social network (Cederlund et al.
2010). Patients suffering from severe cold sensitivity after a severe hand injury describe
a flexible use of relieving strategies because various occupations or situations require
different approaches. Compensatory aids or equipment, the use of own body, a changed
grip pattern, or actions to influence the environment can ease cold-induced symptoms
or discomfort. Changing occupational performance and/or occupational pattern
is a conscious or habitual way of achieving a balance between goals, abilities, and
environmental demands. Taking control and trying to master occupational challenges
during cold exposure are understood as key factors in the process of adaptation, although
enduring the consequences, whilst pushing one’s limit, is sometimes the only option
(Carlsson et al. 2010).
An ongoing awareness of difference in ability and appearance is experienced after an
amputation injury to the upper limb. A functional adaptation and psychosocial adjustment
occur and the use of prosthesis as well as a positive coping style facilitate this process.
A sense of worth is regained by minimising the sense of difference when being able to par-
ticipate in meaningful activities and roles. Future research is probably needed to embrace
a wider view on the use and satisfaction of prosthesis. To what extent the prosthesis allows
the wearer to fulfil a role may be more important than evaluating cosmesis in isolation
(Saradjian et al. 2008).
The disrupted life during the rehabilitative phase after a flexor tendon injury is frustrat-
ing and coped with in different ways. The impact on individuals life is captured in three
themes; struggling-adapting, retreating-battling, and denying-accepting. Every little task
takes longer time when being one-handed. When the hampering effect of the large splint
finally is over, the relief is replaced with more exercises and pain to overcome disability.
Hand Injuries and Disorders during the Life Cycle 175

The lived experience is challenging emotionally, practically, and socially. Impaired func-
tioning mean a reorganisation of activities of daily life and relationships (Fitzpatrick and
Finlay 2008).
Patients with RA express that it is necessary to adjust or ‘dose’ the activity level accord-
ing to their level of energy. Some changes are temporary, whilst others are more perma-
nent depending on the fluctuation of the disease. To stretch one’s limit and being able
to do special things is worth the risk, even though they have to pay for it afterwards.
Having the pleasure of being ‘normal’ is also a reason mentioned. To accept being on
sick leave or giving up work or leisure activities is a difficult process. However, a sense
of relief can appear after a period of trying to keep up or modifying activities (Lutze and
Archenholtz 2007). To choose leisure activities ‘within the range’ of capability and plan
when, where, and how to carry out them are also expressed as a necessity for patients
with RA (Wikstrom et al. 2005).
An understanding of patient’s own resources and experiences in solving challenges in
daily life may guide healthcare professionals in providing adequate support. A holistic
approach, including screening of occupational roles, habits, and psycho-social needs is
essential to gain the information needed to support patients in achieving a sense of control
and self-mastery – key factors for adaptation.

Decision-Making Process and Patients Expectations

Traumatic brachial plexus injuries (BPI) in adults can lead to severe disabilities, and the
restoration of function may not be the only concern for the patient. The decision-making
process and the long-term satisfaction with decision in patients with BPI with com-
pletely avulsed spinal nerve roots has been analysed qualitatively (Franzblau et al. 2015).
Suggested surgical procedures for such extensive BPI can raise questions of potential risks
as well as costs and influence the patient’s treatment choices. Surgery cannot restore all
lost functions, but providing the patient with realistic expectations prior to surgery is
crucial, also concerning pain management and ability to return to work as highlighted in a
mixed method study (Franzblau et al. 2014). Concomitant injuries and the time frame after
the injury are other important decision factors, which all need to be addressed in order to
choose the unique treatment for each patient (Franzblau et al. 2015).
Patient factors that influence the decision to undergo upper extremity reconstruction
are explored in a grounded theory study, including patients with tetraplegia. The results
yield a conceptual model that describes common characteristics for those patients who
underwent upper extremity reconstruction. They follow a stepwise shared sequence of
steps, such as functional dissatisfaction, awareness of upper extremity reconstruction,
and acceptance of surgery. Three checkpoints determine the patients’ ability to meet
the criteria: access to coping strategies, access to information, and acceptability of sur-
gery. Either extremely positive or negative coping prevent patients from moving from
the checkpoint of coping towards the information phase. Both personal and contextual
factors influencing the patients’ positive or negative coping are stressed. Highly posi-
tive coping with a rebuild of identity post-injury decreases the patients’ incentive to
search for additional treatment. A dominance of negative behaviour causes a sense of
worthlessness and changed self-concept, which also hinders a search for further treat-
ment. Depending on contextual factors, such as physical environment, social support,
176 Enhancing Healthcare and Rehabilitation

and financial resources, coping is either reinforced or combated. Many of the contextual
factors that support a strong coping also facilitate the access to information. Being aware
of the surgical options, grip strength is a main priority to enable task performance and
family participation (Harris et al. 2017).
The decision-making process to undergo a joint arthroplasty surgery is also described in
a semi-structured interview study of patients with rheumatoid arthritis. Improved hand
function is the primary reason for surgery for a majority of the patients. Some patients
are concerned with the aesthetics, whereas others do not feel that aesthetics is a good rea-
son for surgery. Invasiveness of the surgical procedure, variability of outcomes, and the
required post-operative rehabilitation influence the decision not to undergo surgery. Most
patients make their final decision for surgery without involvement from their physician.
The authors conclude that the decision to undergo surgery can be personal. Furthermore, it
is stressed that a collaborative counselling between the rheumatologist and hand surgeons
is important to ensure that patients make knowledgeable decisions. An increased under-
standing of the decision-making process may also allow the physicians to tailor treatment
options in accordance with patients’ values and goals (Mathews et al. 2016).
Shared decision-making is also a valuable factor to consider when advancing a more
patient-centred approach in medical care. A semi-structured interview of older patients
(≥ 62 years old), who had sustained a distal radius fracture within the last 5 years, focus-
ing on the perceived versus the desired role of the provider, indicated a varied level of
shared decision-making with the hand surgeon. The perceived role of the surgeon does
not always correspond to the desired role. The recommendation concerning technical
aspects of treatment from the hand specialist is trusted by a majority of subjects. However,
the participants want to provide input related to outcomes or functionality. Although there
is contradictory evidence, most adult patients wish to have a shared approach in their
treatment decisions. Detailing specific technical aspects of care is of less importance than
exchanging information and outcomes of different treatment options. The desired role of
the patient should be evaluated at the start of surgeon-patient interaction to provide high
quality care and treatment decisions (Huetteman et al. 2018).
The close connection between being involved in decision-making and the need for
knowledge throughout the whole care process has been emphasised in an interview study
concerning the patients’ needs during surgical intervention for Dupuytrens’s disease
(Turesson et al. 2017). The expectations before surgical intervention for Dupuytren’s disease
include the trajectory of illness, the expectations of results based on surgeon’s competence,
the care process, and readiness for treatment (Engstrand et al. 2016).

Patient Satisfaction and Appraisal of Results

Patient satisfaction is an important outcome factor for healthcare providers. However, the
relationship between the patients’ and hand surgeons’ satisfaction with outcome is not
always straightforward, as showed in in-depth, open-ended interviews. A discrepancy
in what patients’ and clinicians mean with a satisfactory outcome can exist. The patients’
perspective of satisfaction show that it is experienced as a relative lack of tension between
the patient’s sense of self and the affected hand, meaning that satisfaction is having a
hand that could be lived with unselfconsciously. It was concluded that emotional and
social effects of intervention and the influence of context should be considered in future
Hand Injuries and Disorders during the Life Cycle 177

measures of satisfaction with treatment outcome. It is also suggested that interventions

directed towards facilitating patients’ experience of body-self unity can promote satisfac-
tion with treatment outcome (Hudak et al. 2004).
Qualitative evaluation after upper extremity surgery in young persons with haemiplegia
shows that the hand is easier to use and is used more. The surgery facilitates activities
of daily living (ADL) and promotes independence (Skold et al. 2007) as well as fulfilment
of personal expectations based on specific open questions to the patients preoperatively
(Dahlin et al. 1998), i.e., important parameters that might be difficult to estimate in a
quantitative analysis. In another study of the parent’s experiences of treatment with
botulinum toxin in children with cerebral palsy, the authors conclude that the treatment
can facilitate motor functions, such as using the hand. However, the injections are also
perceived as troublesome, negative, and sometimes even traumatic. Since the treatment has
to be repeated, involved healthcare professionals must deal with these concerns from the
children and their parents (Lorin and Forsberg 2016). However, one has to take the age of
the patient into consideration when judging these concerns, since treatment of patients with
cerebral palsy with botulinum toxin usually starts at an earlier age than when surgery is
indicated as pointed out in suggestions for national treatment guidelines (Arner et al. 2008).
The most important criteria for measuring success of surgery following carpal tunnel
syndrome is relief of symptoms, such as tingling, numbness, sleep disturbance, and
resumptions of important activities. The patients also express a hope that surgery may
address the negative impact that carpal tunnel syndrome has on their quality of life. It is
stressed that the assessment of outcomes of surgical decompression of carpal tunnel syn-
drome needs to include measures of symptom resolution, but also activity limitations and
participation restrictions (Jerosch-Herold et al. 2008).
For patients with surgical intervention of Dupuytren’s disease, a previous positive experi-
ence of healthcare can be related to involvement in decisions, a smooth and rational care
process, and staff competence. The ability to extend the fingers and absence of pain during
and after surgery are positive experiences connected to hand function. Previous negative
experiences related to treatment are seeing many different doctors, being sent back and
forth between different healthcare providers, postponed surgery at short notice, lack of
information or follow-up, or post-operative pain. Negative factors related to hand function
are recurrence of contractures, scar issues, or impaired sensibility (Engstrand et al. 2016).
The role of hand therapy in the rehabilitation process in patients with a dominant side
wrist fracture shows that occupational therapy input increases the patients’ motivation, and
that the therapy is particularly valued for those who attended rehabilitation sessions in
the department. The authors recommend that early and continued patient education is
provided by the therapist and that relatives are engaged when appropriate. Patient and
family anxieties may then be alleviated and realistic expectations of recovery facilitated.
Although objective measurements generally have an engaging effect for patients, the
assessment and treatment needs to be relevant to their ADL to ensure motivation for ther-
apy (Bamford and Walker 2010).
The focus of hand therapy following a flexor tendon repair remains on promoting heal-
ing of the body structures and maintaining the functions of these structures. The precau-
tions of flexor tendon repair require patients to function one-handed for several weeks.
Kaskutas and Powell reported, in a mixed method study, that a majority of patients
with flexor tendon repair brake their precautions to be able to perform necessary tasks.
However, patients who receive interventions directed towards performance of mean-
ingful activities and participation in life roles perceive these advices as useful. To add
instructions in one-handed methods, use of adaptive equipment and exploration of
178 Enhancing Healthcare and Rehabilitation

accommodations needed at work are therefore important in addition to ensure the integ-
rity and function of the healing tendon (Kaskutas and Powell 2013). To provide dedicated
therapy time on how to change handedness is also important for nerve disorders when
struggling with sensory-motor deficits (Ashwood et al. 2017). The impact of unilateral
hand training on observed and self-reported functional performance has been explored
in a group of upper extremity trauma. The unilateral hand training includes participant
education focusing on activity modification and compensatory strategies to perform
daily activities one-handed, provision of a one-handed backpack with adaptive equip-
ment, and a home exercise program for the unaffected upper extremity. Participants are
forced to alter or avoid most activities, have an increased dependency on others, and
take longer time to perform activities, but felt that unilateral hand training decreases
the impact on upper extremity trauma on function. The results encourage a change in
culture in hand therapy (Troianello et al. 2017).
A focus on occupation, when providing treatment, means that the individual hand
patient is viewed as more than physical impairments. This approach also facilitates
holism, which enables the therapists to meet the complex needs of the patients. A group
of interviewed therapists expressed the psychosocial benefits of occupation-based
interventions (occupations are used as both the means, that make use of purposeful activi-
ties as the method, as well as the endpoint, which refers to the goal of the intervention), as it
makes patients responsible, engaged, and motivated. Successful accomplishment of
goals in occupational performance also makes recovery relevant and easily discerned
by the patient (Che Daud et al. 2016, Colaianni et al. 2015). It has been pointed out that
therapists that provide holistic care must consciously keep holism in mind as work
demands compete with the ability to provide such care in a cost containment environ-
ment (Dale et al. 2002).
Three themes emerged when studying the experience of medical and rehabilitation
interventions for traumatic hand injuries in rural and remote North Queensland. They
are medical interventions, experience of rehabilitation, and travel and technology.
A lack of local knowledge is expressed and concerns that delays in medical interven-
tions resulted in ongoing impairment. The exercise program given is modified to fit
into daily routines. A limited understanding of problems related to rural and remote
life styles from Metropolitan therapists appears. Local therapists also have limited
experience in hand injuries and are not always available. Distance and cost of travels
to appointments are of significant concern, and the use of telehealth or tele rehabili-
tation have a mixed response. The authors suggest that rural and remote therapists
with limited competence in hand rehabilitation should find a mentor to ensure that
clinical practice concerns can be addressed. Furthermore, that alternative models of
rehabilitation, e.g., telehealth, shared care, or outreach services should be adapted to
the skills of the local therapist and the needs as well as the preferences of the patient
(Kingston et al. 2015).

Adherence – Client-Centred Practice

Adherence is described as an ‘active, voluntary, and collaborative involvement by
the patient in a mutually acceptable course of behaviour to produce a preventative or
therapeutic result’. A large proportion of patients do not adhere to long-term treatment
Hand Injuries and Disorders during the Life Cycle 179

(World Health Organization 2003), which may have a negative effect on outcome and
healthcare costs (Nieuwlaat et al. 2014). Examples of reasons for non-adherence are lack
of understanding of benefits of treatment, social support, belief in one’s own ability to
make a change, or perceiving the treatment as being too time-consuming (WHO 2003,
Nieuwlaat et al. 2014).
According to a multidimensional model by the World Health Organization, predictors
of adherence are multifactorial and include five interdependent dimensions related
to; patient, condition, socio-economic factors, healthcare system, and therapy (World
Health Organization 2003). The experiences from rehabilitation of the upper extremity,
expectations, and treatment adherence are focused in patients who reported discrepancy
between functional gains and overall improvement. The qualitative analyses confirms
the relevance of the model of the World Health Organization. Patients view themselves
as laypersons, where dedication, knowledge, and trust of therapist are important for
adherence. The therapist ability to clarify the injury, collaboratively make goals, explain
rehabilitative interventions, and help the patient back into life as quickly as possible is
highlighted. The perception on what is clinically relevant change may differ between the
therapist and the patient. Early clarification on the rate of recovery is therefore important
as well as an empathetic approach in order to build trust and establish a patient-centred
care (Smith-Forbes et al. 2016).
Sustained adherence to a progressive strengthening and stretching exercise program for
people with RA (SARAH trial) has been explored at 4 months and 12 months after initia-
tion of the program. The interview data showed that crucial for adherence is the ability
to establish a routine. This is sometimes influenced by practical issues, such as modifying
the exercises or fitting the exercises into life. The therapeutic encounter, perceived ben-
efits of exercise, positive attitude of mind, confidence, and unpredictability, e.g., dealing
with the stage of disease, represent a facilitator or barrier for adherence. It is stressed that
behavioural change components, e.g., exercise planner, daily dairy sheets, and joint goal
setting, are helpful to establish routines, flexible enough to fit in with the person’s life
(Nichols et al. 2017).
The patients’ experiences of early sensory relearning following a median and/or ulnar
nerve repair are described in a mixed method, Q-methodology study. This concept includes
abstract thinking whilst, e.g., imagining a sense of a specific texture when there is no
sensibility in the hand before reinnervation. A large proportion of the patients have diffi-
culties in creating an illusion of touch, lack motivation to complete the sensory relearning,
and need more support. It is suggested that the training should be related to everyday
occupations and the patient’s life situation to enhance motivation and meaningfulness –
important factors for adherence (Vikstrom et al. 2017).
The perceptions of client-centred practice amongst patients with hand-related
disorders have been illustrated in a recent Danish study, where patients, who are
engaged in rehabilitation at six different outpatient clinics, consider information
paramount in understanding their situation and to feel empowered and motivated.
To participate in decision-making is important for a meaningful rehabilitation.
Moreover, the rehabilitation should be individualised, taking patients personalities
and life situations into account. Central for client-centred approach is patient partici-
pation in decision-making, client-centred education, evaluation of outcomes from the
patient perspective, emotional support, cooperation and coordination, and enabling
occupation. These qualitative results may now form a base in the development of
a Danish questionnaire focusing on outpatients’ experience of client-centredness
(Hansen et al. 2017).
180 Enhancing Healthcare and Rehabilitation

Discussion
Qualitative research has the potential to enhance practice by addressing important con-
cerns, such as the hand patient’s subjective experience of disability, patient-care giver inter-
action, clinical reasoning, and decision-making as described in a reflective overview of
qualitative research in rehabilitation science (VanderKaay et al. 2018). An increased under-
standing of and knowledge in the patients’ expectations, resources, life situation, needs,
and desired role may allow healthcare professionals within the field of hand surgery to
tailor treatment options in accordance with the patients’ values and goals. Furthermore,
outcome may be improved by a deeper understanding of important factors for adherence.
Dedication, knowledge, and trust of the care-taker are highly valued aspects. The ability
to present information in an understandable way seems paramount for patients’ ability to
comprehend their situation and to feel empowered and motivated. Pedagogic components,
such as amount and rate of flow of information, learning strategies, as well as ways to
enhance motivation and meaningfulness, need to be further studied.
When evaluating functioning, health, and treatment effects, the choice of PROMs should
match the domains and construct in terms of the ICF that is relevant to the specific clinical
subgroup. As pointed out in a combined qualitative study and systematic review, impor-
tant and relevant aspects of functioning and environmental factors are only to a limited
extent captured in PROMs today. Emotional functions, i.e., anger, anxiety related to every
day demands and coping ability, potential deterioration or fear of increased pain, as well
as positive emotional states, e.g., being satisfied and hopeful, are aspects which were
described as highly important for the patients. Skin-related functions, aesthetic changes,
stress, loss of autonomy, and interpersonal interaction are other examples of missing or
rarely occurring aspects in PROMs. The role of environmental factors, such as support
from family, friends, peers, and colleagues or adaptive products, also needs further atten-
tion (Coenen et al. 2013). Furthermore, the process and structure of care needs to be evalu-
ated in order to provide a broader perspective on outcome (Engstrand et al. 2016). The gap
in current measures can be addressed when developing new measures or by altering exist-
ing measures (Coenen et al. 2013). Current and future qualitative research can then play an
important role in providing the patients’ perspective.

Overview
In conclusion, some areas of concern have been illustrated in the present overview, which
are important from the patient’s point of view. A congenital condition, a disease, or trauma
to the hand or arm may entail consequences during the whole life cycle of the patient
and on all levels outlined in the ICF. By embracing the results from qualitative research,
healthcare professionals have the opportunity to gain new insights into the views of the
treated patient’s experiences and needs. The results achieved from qualitative research
can serve not only as valid and important information for the patient-care giver interac-
tions and the treatment of the patient, but also as a knowledge base to broaden the content
included in PROMs. Questionnaires that contain valid items from the patient point of view
are crucial for the quality of quantitative research and the motivation to reply to PROMs
included in national quality registries. Future challenges for qualitative research include
Hand Injuries and Disorders during the Life Cycle 181

advances in methodology and a careful and broad inclusion of relevant patients illustrat-
ing the complexity. Increased use of mixed methods may here play an important role when
investigating composite research questions. Critical evaluation of the trustworthiness of
qualitative findings requires detailed information about credibility, dependability, con-
firmability, and transferability. Qualitative research can then contribute to an important
and deepened knowledge base in the field of hand surgery and hand rehabilitation and
the care of patients with a congenital condition, a hand disorder, or a hand trauma may
thereby be improved.

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11
Giving People with Aphasia a Voice
through Qualitative Research

Linda Worrall

CONTENTS
How Can People with Aphasia Participate in Qualitative Research? ................................. 186
How Has Qualitative Research Enhanced Aphasia Rehabilitation? ................................... 187
Interviews ................................................................................................................................ 187
Observations ........................................................................................................................... 188
Nominal Group Technique ................................................................................................... 188
Qualitative Research Has Described Therapeutic Practices in Aphasia Rehabilitation ..... 189
Surveys..................................................................................................................................... 189
Email Interviews..................................................................................................................... 190
Focus Groups .......................................................................................................................... 191
Delphi Technique.................................................................................................................... 191
Qualitative Research Is an Important Precursor to the Development of Self-report
Measures....................................................................................................................................... 191
Qualitative Research Can Help to Explain the Results of Large Randomised
Controlled Trials .......................................................................................................................... 192
Overall, Qualitative Research Has Enhanced Healthcare and Rehabilitation for
People with Aphasia and Their Families ................................................................................. 192
Qualitative Research Impacts on All Stakeholders in Aphasia ............................................ 193
The Future of Qualitative Research in Aphasia ...................................................................... 194
References .................................................................................................................................... 195

Qualitative enquiries created a new era in the history of aphasia research. It provided a voice
for people with aphasia and their families and enriched our understanding of aphasia. It
helped service providers understand what it is like to have aphasia and understand how
they experience everyday life with aphasia.
Aphasia occurs because of an impairment to the language processing pathways of the
brain. It can occur after a stroke, an aneurysm, a brain tumour, or a head injury from a car
accident or gunshot wound. The damage can be so severe that neither understanding nor
expressing words and sentences is possible. Alternatively, the aphasia can be so mild that
occasional words are substituted for another. Depending on the area of damage, under-
standing or expression can be differentially affected.
History shows a progression of understanding of aphasia from the antiquities in which
the mind-body link was being explored through to the current day where neuroimaging
enables us to see the association between the brain and language (Tesak & Code 2008).
Naturally, a medical model predominated in the early aphasia literature in which localised

185
186 Enhancing Healthcare and Rehabilitation

lesions of the brain were attributed to types of aphasia. Then, linguistics and neuropsy-
chology made their mark on our understanding of aphasia. From the 1980’s, rehabilitation
sciences had an impact, particularly since the therapists delivering aphasia therapy were
based in rehabilitation wards and centres.
Qualitative research revolutionised our understanding of aphasia in the late 1990’s. The
impetus came from the group of British researchers who established the organisation
‘Connect UK’. Whilst Connect had a physical presence in the centre of London, its reach to
other parts of the United Kingdom was important, and their influence in the international
aphasia community was significant. They used qualitative research to publish a seminal
text ‘Talking about Aphasia; Living with Loss of Language after Stroke’ (Parr et al. 1997),
which described the lives and concerns of 50 people with aphasia.

How Can People with Aphasia Participate in Qualitative Research?

Qualitative research uses data collection methods that involve language such as inter-
views or surveys whilst the research process itself (e.g., appointments, consent forms)
is via written text. People with aphasia have difficulty with all forms of communication
(oral as well as written), so reading and writing are affected as well as talking. Many
stroke researchers therefore do not include participants with aphasia in their research
(Ali et al. 2014). This excludes up to a third of the stroke population. Hence, conclusions
drawn from stroke studies that exclude people with aphasia may be biased towards
non-aphasic stroke survivors.
All researchers should be prepared to use supported communication strategies
(Kagan et al. 2001; Simmons-Mackie et al. 2013) to collect valid responses from participants
with aphasia. These include acknowledging the competency of the person with aphasia
at the beginning of the interview (‘I know you know’), asking short and simple questions
(no embedded phrases or clauses, no compound sentences or reversed questions), writing
keywords down in front of the person with aphasia to help their understanding, helping
the person express themselves by having relevant photos and pictures present, and allow-
ing the participant more time to respond. Some people with aphasia prefer a family
member present to help find the words to convey their message. Sending the questions to
the participants and the family prior to the interview can help them discuss their responses
at home and be primed to respond at the interview. Videotaping in addition to audiotap-
ing has the benefit of allowing non-verbal behaviour to be noted in the transcript since
this can reveal the meaning of the utterance (Luck & Rose 2007). For people with severe
aphasia, enabling them to agree or disagree with statements in an interview (e.g., other
people have said …, is this your experience?) can help them to contribute to the interview
(Lanyon et al. 2018a).
Some researchers have found novel ways of gaining more in-depth responses from
participants with aphasia. Brown et al. (2013) used self-generated photography to help peo-
ple with aphasia convey abstract concepts in her study of what it means to live successfully
with aphasia. At the end of one interview, participants were asked to take photos of what
they considered to represent successfully living with aphasia using a disposable camera or
their own camera. At the next interview, the participants described how the photos related
to successfully living with aphasia. Both interviews provided a richer understanding of
what people with aphasia considered to be living successfully with aphasia.
Giving People with Aphasia a Voice through Qualitative Research 187

Davidson et al. (2008) used stimulated recall to probe the perceptions of participants
with aphasia about the interactional component of communication. As part of a qualita-
tive collective case study, she asked three people with aphasia to choose typical social
situations in which conversations took place with two regular communication partners.
The conversations were videotaped and then the participant with aphasia was interviewed
about the interaction whilst watching the video of the conversation with the researcher.
This provided greater detail and depth to the responses of the participants because they
could comment directly on real conversations that they were involved in.

How Has Qualitative Research Enhanced Aphasia Rehabilitation?

Interviews
As noted earlier, Parr et al. (1997) provided one of the first glimpses into the lived experience
of aphasia. The chapter headings of their book use the uncorrected words of people with
aphasia and provide an insight into some of the results. For example, to describe the early
experience of stroke and aphasia the chapter title is ‘Is frightened. Is frightened.’ Describing
their need for more information about aphasia is the quote ‘Everything seems a secret’,
whilst the chapter on learning to live with aphasia is ‘I’m fed up of saying I’m sorry’.
Any person who reads the book can’t help but react to the powerful messages conveyed
by the people with aphasia who were interviewed.
Worrall et al. (2010b) repeated the Parr et al. (1997) study by interviewing 50 people
with aphasia but with a research question focussed on what people with aphasia want.
In addition, this study interviewed the family members of the participants as well as their
treating speech pathologists to determine if there was a match between the goals of the
client, the family member, and the therapist. Qualitative description was used to describe
what people with aphasia want (Worrall et al. 2010b), what family members wanted both
for the people with aphasia as well as themselves (Howe et al. 2012), and what speech
pathologists reported their goals were for the client (Sherratt et al. 2011). Comparing the
interviews from the three groups, tensions were identified (Worrall et al. 2010a) in the
areas of relationships, hope, contextual influences, goal translation and communication,
and translation of identity. The overall conclusion of the study was that the tensions could
be partly resolved through a greater emphasis on relationship-centred care by aphasia
therapists. Whilst a strong relationship is core to most healthcare interactions, interactions
to develop relationships are significantly compromised by aphasia so additional efforts
are needed to ensure that a strong healthcare relationship is built between the person with
aphasia, the family members, and the healthcare professional.
Both the Parr et al. (1997) study and Worrall et al. (2010) study adopted a phenomenological
approach using in-depth semi-structured interviews as the method. Similar methodology
to gain the ‘insider’s perspective’ has been used to describe the construct of successfully
living with aphasia (Brown et al 2010; Grohn et al. 2014), quality of life (Cruice et al. 2009),
engagement in healthcare (Bright et al. 2017), what aphasia means in other cultures such as
Maori (McLellan et al. 2013), barriers to participation in the community (Howe et al. 2007)
and in the hospital (O’Halloran et al. 2012), participation in aphasia groups (Lanyon et al.
2017, 2018a, 2018b), or the preferences of people with aphasia for service provision in
psychological healthcare (Baker et al., 2018).
188 Enhancing Healthcare and Rehabilitation

Whilst gaining the insider perspective of people with aphasia has been an important
contribution of qualitative research in aphasia, insights from other stakeholders (e.g., fam-
ily members, healthcare professionals) has also alerted researchers to gaps in service pro-
vision (Baker et al., 2018; Shrubsole et al. 2018a) or perceptions of evidence-based practice
by speech pathologists in acute care (Foster et al. 2013, 2014, 2015). Whilst these studies
have used interviews as a method of data collection, other research questions require a
different approach.

Observations
Observations with a focussed ethnographic approach have also been an important adjunct
to interviews. Observational methodology is suitable for real-life situations where the
researcher wants to observe what happens in the natural context, rather than relying on
a person’s retrospective description of an event. For example, Howe et al. (2008) used par-
ticipant observation to observe people with aphasia in the community (at the shops, at
the doctors, at social events) to identify potential barriers and facilitators to community
participation. The primary investigator predominantly adopted a passive participant role
so that she could observe natural communication as it occurred. This often provided her
with a different perspective to the client about the success of the communication. That is,
she observed communicative interactions that she considered to be unsuccessful, but that
the participants with aphasia did not consider to be problematic. Triangulation of the data
can therefore provide some interesting insights.
O’Halloran et al. (2007) observed communication activities of people with a commu-
nication disability in hospital, including those with aphasia, to identify the communica-
tion needs of hospital inpatients. The goal of this research was to identify items for the
Inpatient Functional Communication Interview (O’Halloran et al. 2004), however, this ini-
tial observational study provided an insight into how people with aphasia and people
with other communication disabilities are able to communicate their healthcare needs.
A second observational study was conducted to investigate the environmental factors that
influenced communication in hospital (O’Halloran et al. 2011). Whilst context was a major
facilitator for communication, this study identified barriers to communication such as the
healthcare providers’ attitude to communicating, the physical environment, and hospital
policies and procedures. The impact of aphasia on communicating important healthcare
needs whilst in hospital was therefore highlighted in this study.

Nominal Group Technique

A type of group discussion that is often used in our program of research is the nominal
group technique (Delbecq et al. 1975). The nominal group technique has a structured and
staged approach to group discussions that results in a prioritised list being generated at
the end of the group discussion. The first stage is a ‘round robin’ individual response to
the question. Each person is provided with time to privately reflect on the research ques-
tion and prepare a response. For people with moderate or severe aphasia, they often need a
support person beside them helping them to achieve this. The advantage of this approach
for people with aphasia is that the round robin of contributions allows them to have their
say without one more verbal group member dominating the discussion. Each response
is written on a board for all to see. This process of writing responses on the board is a
strategy also used in supported communication so it facilitates the comprehension of all
responses by the participants. The process of clarification and grouping of each response
Giving People with Aphasia a Voice through Qualitative Research 189

in the next stage is also helpful for people with aphasia, as it cements the meaning of
each response. The final round where each participant votes on the responses generates a
ranked list of items. People with aphasia are provided with three sticky notes that has a 1,
2, or 3 written on each. They place their number 1 sticky note on an item to indicate that
this is what they vote as the highest priority. Then they proceed to vote for other items on
the board with their two other sticky notes. This simple numerical voting system enables
them to indicate their preferences without needing to use words. In addition, an advantage
for the researcher is that transcription of the whole focus group conversation is not needed.
The ranked list on the board is the only result that is important. It is the in-situ synthesis of
the group so themes are not only identified by group members, but also prioritised.
Wallace (2017c) used this approach to seek the perspectives of people with aphasia and
their families on what outcomes were important to them. The research was conducted inter-
nationally in different languages because it was only the ranked list at the end that needed
to be translated. A manual and demonstration video were used to ensure consistency.
Group discussions were audio or video recorded to allow for data checking. The ranked
lists from each site across the world were combined into a single list of the concepts that
people with aphasia and their family members considered to be important outcomes.

Qualitative Research Has Described Therapeutic

Practices in Aphasia Rehabilitation
Surveys
Online surveys using software such as SurveyMonkey or Checkbox can be disseminated
more widely than paper-based surveys and can save the respondent and the researcher
time. Surveys typically have a free text section in addition to forced choice responses.
The free text can be analysed using simple content analysis and in some software,
analysis of free text is automated as well as analysis of the forced choice sections. Free text
analysis using qualitative methods may serve to elaborate on the quantitative responses
in the survey.
Rose et al. (2010) used a structured verbal survey to explore whether people with apha-
sia considered it important to receive written stroke and aphasia information, and what
their preferences were for health information media and timing of provision. Forty adults
with aphasia were purposefully selected using maximum variation sampling for a variety
of variables including time post stroke, aphasia severity, and reading ability. Rose et al.
presented questions in a multimodal format (i.e., both spoken and written) to maximise
comprehension. The written survey was formatted using aphasia-friendly principles,
which included simplified language, large sans-serif font, white spacing, and relevant
pictures. By administering the survey in a face-to-face manner, she was able to repeat and
rephrase questions and to clarify and confirm participant responses. She chose to use this
structured approach because the questions were specific (e.g., What is your first choice (from
the presented options) for how to be given stroke and aphasia information soon after your stroke?),
and it enabled her to use both open-ended questions and fixed response formats (e.g.,
dichotomous yes/no and visual analogue scales) to assist participations with severe to
mild aphasia to participate (aphasia quotient: range, 6.58–93.1; M ± SD = 75 ± 20.5). Hence,
a semi-structured in-depth interview was not appropriate for the research questions
190 Enhancing Healthcare and Rehabilitation

being asked. During the survey, participants were also shown examples of written health
information that they could tangibly hold and refer to when responding to questions, for
example, ordering them according to preference. The menu of possibilities provided in
the fixed-choice response formats also meant that further exploration of concepts, as is
typical when using a semi-structured interview methodology, was not needed. In addi-
tion, this descriptive methodology permitted the audio recording of responses to open-
ended items and other spontaneous elaborations which were transcribed verbatim and
categorised according to the principles of qualitative content analysis. This added depth
to the descriptive data obtained, in that a summary of the qualitative responses includ-
ing illustrative quotes followed the reporting of descriptive data. Therefore, despite the
reading and language difficulties associated with aphasia, this research identified that
participants considered written information to be important, and that people with apha-
sia desired both written stroke and aphasia information particularly from one-month
post stroke.
The impact of aphasia has therefore been detailed using predominantly qualitative
methods. A group of researchers involved in the Collaboration of Aphasia Trialists (http://
www.aphasiatrials.org/) identified that these findings should be included in the defini-
tion of aphasia. Berg et al. (2016) designed a serial mixed methods study which sought to
develop a consensus from aphasia researchers on the definition of aphasia through online
surveys. They proposed a definition and asked whether the respondent agreed or not with
the definition. They also had a free text field where respondents could state their reasons
for not agreeing with the definition. A simple content analysis revealed that there were
two main concerns with the definition. In future rounds of the online survey, the two col-
lated concerns were voted upon by all respondents with the surety that all perspectives
were considered. Hence, the qualitative analysis contributed significantly to the overall
aim of obtaining a consensus definition.

Email Interviews
Email interviews (McCoyd & Kerson 2006) are like face-to-face interviews, but allow
the respondent the flexibility to answer questions when they have time free. For the
researcher, there is no need for transcription, and the responses are generally more con-
sidered when written. This format of interview also allows greater anonymity so the
respondent may be more willing to reveal aspects of their practice that they would be
reticent to do in a face-to-face interview. Worrall et al. (2018) sought the perspective of
speech pathologists about the use of mobile technology for measuring functional com-
munication in aphasia using email interviews. A sample of 11 experienced speech pathol-
ogists were recruited and an interview schedule of six questions was developed. Two
questions were sent to the clinicians in each email. When the responses were emailed
back, the interviewer probed and clarified the responses as they would have in a face-
to-face interview. Any complex answers were paraphrased back to the participant for
confirmation so that the meaning was clear. A further two questions were then emailed.
This process continued until all questions were answered by all participants. Content
analysis was used since the questions were quite specific and respondents provided rela-
tively succinct responses. Respondents enjoyed the opportunity to reflect on their prac-
tice, and the email interview format worked well for busy clinicians. Oral interviews
and observation may have provided greater depth of understanding of the issue in this
research, however, the emailed responses gave a clear message without the need for fur-
ther data in this early stage of the research.
Giving People with Aphasia a Voice through Qualitative Research 191

Focus Groups
Focus groups are another way of collecting data in a time limited way. Clinicians are often
able to allocate an hour to participate in a focus group on a topic that is relevant to their
practice. Focus groups allow participants to hear from other team members and discus-
sions can trigger responses from other focus group members. Baker et al. (2018) have used
focus groups to efficiently collect data from multidisciplinary teams in metropolitan and
non-metropolitan stroke rehabilitation hospital and community settings. The focus group
topic was about managing depression in aphasia after stroke and needed input from all
professions. The group discussion also enabled the team to discuss this complex multilay-
ered topic, and whilst the purpose was to collect data, the discussion also created greater
awareness of the issue by the team.

Delphi Technique
The Delphi technique is the process of collecting data from a group with the aim of
achieving group consensus. When disseminated via the Internet, the term has become the
eDelphi process.
Wallace et al. (2017b) conducted an eDelphi study with aphasia therapists and their man-
agers and then aphasia researchers Wallace et al. (2016) about outcomes that were impor-
tant to measure in aphasia research. The process for clinicians and their managers began
with an open-ended question, and these were analysed using content analysis. In the next
round, respondents rated the importance of the items generated in the first round. Those
items that achieved the predefined consensus criteria were sent back to participants and
re-rated. The study provided a list of outcomes that were considered important by apha-
sia therapists and their managers. In the study of researchers, the same eDelphi process
was used and consensus was also achieved for some outcomes. The important outcomes
from all stakeholder groups were then combined using the classification scheme of the
International Classification of Functioning Disability and Health (Wallace et al. 2017a).
This research program is now determining which measures within each construct should
be used in aphasia research (Wallace et al., 2018).

Qualitative Research Is an Important Precursor to

the Development of Self-report Measures
The patient’s perspective is the core component of patient-centred care. Self-report mea-
sures are frequently used at all stages of aphasia rehabilitation from goal setting to outcome
measurement. Previously, the items for the measure were generated by the authors’ own
opinions about what should be measured or through theoretical concepts. More recently,
rigorous qualitative research has used the patient’s own words to develop item sets. This
has ensured the validity of the tool from the perspective of the patient.
Grawburg et al. (2019) used this process to develop the Significant Other Scale for
Aphasia (Significant Other Scale-Aphasia). The scale seeks to measure the disability
experienced by significant others when their family member acquires a communication
disability. Grawburg et al. (2013) interviewed the significant others of people with apha-
sia to determine the positive and negative aphasia-related changes to their lives after
their family member acquired aphasia. The results not only provided a holistic view
192 Enhancing Healthcare and Rehabilitation

of the impact of aphasia on significant others, but the themes also became the items for
the Significant Other Scale-Aphasia measure. Whilst psychometric analysis continues
to refine the measure, the initial generation of items using qualitative research has cap-
tured the most important content for the measure – the perspective of the respondents
themselves.

Qualitative Research Can Help to Explain the Results

of Large Randomised Controlled Trials
Qualitative research has often been used to explain the results of quantitative research, but
the need for qualitative investigations alongside large randomised controlled trials (RCTs) is
becoming increasingly important. The science of aphasia rehabilitation is relatively young,
and high-level quality evidence for the effectiveness of therapies remains a challenge. In
addition, the requirements of clinical trials in complex interventions such as aphasia therapy
is rapidly developing with a growing recognition that RCTs’ need earlier phased studies to
examine the feasibility and potential effect of the trial as well as refining all aspects of the
potential trial such as the intervention, the appropriateness of randomisation, the sensitivity
of outcome measures to change, and the specificity of the selection criteria.
Process evaluation should be a major component of all stages of trials. Process evalu-
ation determines whether the trial was delivered per protocol. Qualitative research is a
major part of process evaluation. In the field of aphasia rehabilitation trials, data collected
from all stakeholders (participants, researchers, therapists, managers) are an important
component. Their perception of the trial is an important indicator of whether the trial pro-
ceeds to implementation into clinical practice or perhaps to a larger trial.
An example of this in aphasia rehabilitation is from an early stage trial investigating the
effect of a tailored implementation intervention on speech pathologist uptake of recom-
mendations from clinical guidelines (Shrubsole et al., 2018b). The trial itself was a feasibil-
ity study of a cluster randomised controlled trial. As part of the process evaluation, Hickey
et al. (2019) conducted focus groups with the speech pathologists involved in the study at
each site or cluster. This revealed differences between sites in the extent of trial participa-
tion. Organisational readiness was a key factor in the differences. The authors propose
that organisation readiness be measured as part of the selection criteria for upscaling the
trial. If the focus groups had not occurred, this key factor would not have emerged as a
consideration for the next trial.

Overall, Qualitative Research Has Enhanced Healthcare and

Rehabilitation for People with Aphasia and Their Families
In summary, people with aphasia can and should participate in qualitative research.
Interviews, observations, and nominal group techniques have been the primary meth-
odologies. Each methodology needs to be adapted to meet the communication needs of
participants with aphasia. Qualitative research has enhanced the understanding of what
it is like to live with aphasia.
Giving People with Aphasia a Voice through Qualitative Research 193

Qualitative research has also been frequently used to gain insights from health pro-
fessionals into healthcare practices surrounding people with aphasia. Surveys, email
interviews, focus groups, and Delphi techniques have been the methodology of choice
because they are time efficient for busy clinicians. This has progressed aphasia rehabilita-
tion to greater person-centredness, better understanding of how the hospital and commu-
nity environment may need to change to accommodate the communication disability of
aphasia, and greater cohesion of service delivery. The person with aphasia and their family
now have a voice about the impact that aphasia has had on them. It has also provided them
with a forum for directing services that meet their needs.

Qualitative Research Impacts on All Stakeholders in Aphasia

Many people with aphasia state that lack of awareness of aphasia is the most important
barrier to living well after their stroke. Stories of the experiences of people with aphasia
and their family are powerful tools to create greater aphasia awareness in the media, the
social media, in health profession education, on the type of research questions academics
ask, and how educators teach speech pathology students about aphasia.
Aphasia is difficult to describe, because language is generally taken for granted. Videos
of people with aphasia or the participation of people with aphasia in awareness raising
events is highly beneficial. Listening to the conversation of a person with aphasia helps
people understand what aphasia is and how it might affect their lives. It solicits empathy
and helps to overcome stereotypical attitudes that associate language impairment with
‘mental impairment’. People with aphasia go to great pains to say they are not stupid.
Hence, research that includes people with aphasia has greater impact.
An example of how qualitative research has had an impact on speech pathologists is the
research of Worrall et al. 2010 on the goals of people with aphasia. When oral presentations
about the project occur, quotes are used to illustrate themes. The illustrative quotes are kept
intact with no aphasic errors corrected or omissions inserted. Speech pathologists can see
that these are real quotes of real people with aphasia and identify strongly with the type of
language impairment used in the quotes. The quotes are often things they have heard their
own clients say in practice so the realism of the data has an emotional impact on therapists.
Moreover, as qualitative research tends to ask questions about how people with aphasia
experience something, and tends also to offer details about the ‘why’ and ‘how’ questions
that clinicians may have, the type of findings gathered provide quite different perspectives
to quantitative research. This can lead to ideas about how best to approach intervention
in a client-centred way. An example of this is the shared, monitored, accessible, relevant,
transparent, evolving and relationship-centred (SMARTER) goal setting framework (Hersh
et al. 2012), which was developed from the stories of people with aphasia and their fami-
lies collected in the goals in aphasia project (GAP) (Worrall et al. 2010a). This framework
included ideas about the need for goal setting to be collaborative, accessible, flexible, and
relationship-centred. As this model was a translation of research results into clinical use,
the framework immediately has greater face validity and meaning to therapists. Qualitative
research seeks to build on the expertise of people with aphasia as research partners rather
than subjects, and so their voices can positively shape how therapists approach their work.
Some of the qualitative research in aphasia have exposed failures of the health system and
given service users a stronger voice to promote quality improvement. Tomkins et al. (2013),
194 Enhancing Healthcare and Rehabilitation

for example, described themes of satisfaction and dissatisfaction expressed by people with
aphasia about services they received. People with aphasia are rarely asked for their opinion
about the services they have received within the healthcare system because most patient
experience surveys are written. Patient experience surveys are either not given to people
with aphasia because of the assumption that they can’t respond, the items on the survey are
not always relevant to their concerns about communication breakdown with staff, or the
person with aphasia themselves will not expose their language disability by trying to com-
plete the survey. The implementation of aphasia-friendly processes within hospitals (e.g.,
mealtime menus, speech pathology reports, appointment letters) has thus begun to emerge,
and aphasia-friendly patient experience surveys are another step towards enabling people
with aphasia to have more say about the services they receive.

The Future of Qualitative Research in Aphasia

Qualitative publicly available digital data are beginning to emerge as a source of service
user data for analysis. The emergence of social media platforms such as Facebook and
YouTube are rich sources of qualitative data that are making the unheard voice of the
service user more prominent. For example, the Aphasia Recovery Connection Facebook
site provides a safe forum for people with aphasia and their families to ask questions,
receive encouragement, and feel part of a community. People with aphasia don’t often
post because of their language impairment, but if they do, this is an avenue of expression
for them. Family members often post their own questions or post on behalf of the person
with aphasia. The forum is a log of unmet needs and qualitative researchers might delve
into the online forum to let service providers know what services are not being provided.
Another source of online data are YouTube videos. There has been an increase in the num-
ber of videos of people with aphasia on YouTube. The most popular is the annual video
post of Sarah Scott who developed aphasia when she was 18 years of age. This video has
been seen by 1.7 million viewers. They frequently leave comments on the video about their
reactions to the videos or how they use the videos to help people learn about aphasia. If
aphasia awareness is so important to people with aphasia, then being highly visible in
the social media channels and provoking positive reactions to aphasia is important, then
qualitative research in the future can help identify what needs to be done.
A future challenge of qualitative research is to include people with severe aphasia in
the participant sample. Capturing valid responses and opinions of people with a severe
aphasia is especially challenging, and new flexible methodologies need to be developed
that assist in that process.
A further challenge is to obtain qualitative data about abstract topics that need metalin-
guistic skills that people with aphasia may not have. Topics such as how the health service
can better engage them or how aphasia affects their psychological health are difficult for
most people, let alone people who have aphasia. These are important topics in aphasia
rehabilitation that may not be measurable and can only be investigated via qualitative
methods.
The insistence that qualitative methods inform the development of measures used in
aphasia rehabilitation may lead to more valid measures where patient opinion is impor-
tant. Not only will patient-reported outcome measures have greater person-centredness
and relevance to the person completing the measure, but also reflect more valid constructs.
Giving People with Aphasia a Voice through Qualitative Research 195

The efficacy of aphasia rehabilitation has had a chequered past. Cochrane reviews of
speech and language therapy for aphasia failed to show a difference between speech
pathology-provided intervention and no treatment or volunteer-provided treatment
(Greener et al. 1999). Similar results still occur today, and so mixed messages about the
effectiveness of aphasia rehabilitation are still prevalent. Integrating qualitative research
into RCT designs through process evaluation will give insights into why some RCTs
showed positive results and some others did not.
A major enhancement of aphasia rehabilitation practices would be to give people with
aphasia a voice by using qualitative methods to seek feedback on services. Focus groups
of past patients are an easy method for obtaining feedback with experienced qualitative
researchers able to develop themes from recordings rather than transcripts.
In summary, the future of qualitative research in aphasia must ultimately lead to greater
person centredness in aphasia rehabilitation. People with aphasia and their families will
use their new-found voice to demand it.

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12
The Impact of Qualitative Research in Rheumatology

Claudia Oppenauer, Erika Mosor, Valentin Ritschl and Tanja Stamm

CONTENTS
Overview about Qualitative Research in Rheumatology, in Contrast and
Combination with Qualitative Research Approaches ........................................................... 199
Qualitative Research in Studies That Used the International Classification of
Functioning, Disability, and Health.......................................................................................... 200
Qualitative Research Issues Specific to RA.............................................................................. 200
Delivery and Procedures of Clinical Care Including Adherence .................................... 200
eHealth ..................................................................................................................................... 202
Outcomes ................................................................................................................................. 202
Most Commonly Used Methods in Qualitative Research in RA.......................................... 203
Quality of Qualitative Research ................................................................................................ 203
Discussion .................................................................................................................................... 204
References .................................................................................................................................... 204

Overview about Qualitative Research in Rheumatology, in Contrast

and Combination with Qualitative Research Approaches
Whilst quantitative research methods have significantly contributed to the achievements
in medical research, collected huge amounts of measurable data, and led to evidence-based
diagnosis and therapy in healthcare, the use of qualitative methods has long been neglected
in medicine, qualitative publications are still scarce in high-impact journals. Nevertheless,
quantitative data tell us only little about attitudes, experiences, behaviour, or perceptions
of patients and their daily living, e.g., in patients with a chronic disease. Furthermore,
qualitative methods are most suitable to explore experiences, perspectives, and the clini-
cal reasoning process of healthcare professionals. Saketkoo and Pauling showed that the
number of qualitative research publications in Medline has more than tripled in rheumatic
diseases from 1950 to 2015 [1]. In rheumatoid arthritis (RA), numerous qualitative studies
have been done in various areas, such as shared physician/health professional and patient
treatment decision making [2–5], interventions for musculoskeletal pain [5], family, social,
and intimate relationship level experiences [6–8], physician/health professional patient
interaction [9–16], perceived health benefits of interventions [17–19], adherence [19–22], and
patient reported outcomes [23–25].
Moreover, for neglected or rare disease manifestations in rheumatology, qualitative
research has become a significant method for evaluation due to the small number of
patients [1].

199
200 Enhancing Healthcare and Rehabilitation

Not only in rare conditions, but also to elicit individual meanings of symptoms, qualita-
tive research has added significantly to the scientific knowledge in medicine. As an example,
the meaning of pain differs substantially between different people: Ong and Richards [26]
refer to the important potential of qualitative research to assess individual patients’ pain
experiences. They discuss the various cultural and verbal expressions of pain and the rel-
evance of the combination of body, gesture talk, and the spoken word. Since pain is highly
linked with other health and disease conditions, complex methods are needed to properly
assess how patients experience pain and how this interferes with daily life activities and
quality of life [27]. The potential of qualitative research for clinical practice in rheumatology
is also highlighted by a study about flare in RA and a related editorial article [28,29].
The combination of quantitative and qualitative research has been more commonly used
in healthcare research, and qualitative methods are integrated at different stages of quan-
titative research in the last years [30]. For the development of patient reported outcomes
measures (PROMs), a mixed methods approach including an active involvement of patients
as research partners has become state of the art in rheumatic disease research [1,31,32].

Qualitative Research in Studies That Used the International

Classification of Functioning, Disability, and Health
Several studies used qualitative methods and the International Classification of Functioning,
Disability and Health (ICF) of the World Health Organisation as a framework for func-
tioning categorisation, The aims of these studies were to explore if the problems and
issues important to patients with musculoskeletal and rheumatic diseases are adequately
covered in the most commonly used outcome measures and which relevant issues might
be missing in these instruments [25,33–35]. The Comprehensive ICF Core Set for RA as an
application of the ICF was developed in concordance with the patients’ perspectives using
focus groups in order to explore the aspects of functioning and health important to patients
with RA. Thus, results of the focus groups were linked with the ICF categories, and the
ICF Core Set for RA was validated by the qualitative data [34,36]. Whenever new patient-
reported instruments are developed or existing instruments are adapted, qualitative
research builds the basis for this process: The perspectives of patients and health profes-
sionals differ substantially and qualitative research allows for systematic exploration and
analysis of the problems and needs important to patients from their perspectives [37–40].

Qualitative Research Issues Specific to RA

The following sections highlight major areas in which qualitative research has contributed
to the scientific knowledge, but also the clinical care for RA.

Delivery and Procedures of Clinical Care Including Adherence

Qualitative research showed that patients were often worried and concerned when
being informed about the stage and severity of their rheumatic disease by clinicians.
The Impact of Qualitative Research in Rheumatology 201

Furthermore, these patients were often not adherent to treatment and reported signifi-
cant anxieties. Although patients could recall most parts of the information provided by
the clinicians, the information was not meaningful for them. They remained concerned
and anxious because they had already experienced pain and other symptoms which had
influenced their daily activities. It is suggested that patients can be reassured more suc-
cessfully if clinicians reduce the use of clinical relevant terms and focus more on the
patients’ perspective and subjective perception of the disease and its consequences on
daily life [11].
However, clinicians sometimes underestimate patients’ willingness to take aggressive
treatments and feel inhibited to recommend these therapies although the effectiveness
is proven. Focus groups about the COBRA (based on the Dutch acronym Combinatie
therapie Bij Rheumatoide Arthritis) therapy revealed that clinicians worried about
negative side effects and did not take the time to explain therapy course and possible
negative effects. On the other hand, the patients were aware of the negative effects, but
were not worried about an aggressive combination therapy and taking multiple pills
if this therapy would suppress their illness symptoms and increase disease status and
prognosis [41].
The evaluation of flare is an important issue in RA research and qualitative methods
or mixed-methods approaches were used to understand this phenomenon from the per-
spective of patients. Since early diagnosis and intervention for flare episodes are essential
for the course of the disease, qualitative methods are particularly suited to gain insight
in patients’ perspectives. One study revealed that patients consulted physicians as a last
strategy when symptoms of flare were no longer bearable, when flare had major conse-
quences on daily life activities, and when self-management strategies such as the use of
analgesics or distraction techniques were no longer effective [28]. Flurey and colleagues
showed that patients with different characteristics appear to manage RA life in differ-
ent ways. Male patients were more likely to consult physicians at an early stage of flare
because of ineffective self-management techniques compared to women. Yet, education
programmes could help to support patients to detect flare symptoms at an early stage and
seek medical help before the symptoms affect daily life activities [42].
Qualitative methods also provide deep insights on perceptions of risk and predic-
tive testing held by first degree family members of RA patients with an increased risk
of developing RA. Interviews revealed that knowing the actual risk would increase
their anxiety and would determine future decision making. The uncertainty of the
test results was related to significant worries and was experienced even worse when
pain symptoms had already been experienced. Relatives asked for emotional support
and specific risk information in order to understand and cope adequately with the risk
information provided [43,44].
Qualitative research has been also successfully used in the exploration of the phe-
nomenon of non-adherent behaviour. Non-adherence is defined as the extent to which
patients stick to pharmacological and/or non-pharmacological treatment recommen-
dations [45–48]. A wide variety of clinical variables have been identified in statistical
analyses that facilitate non-adherence. Yet, these study results were partly inconclusive
and contradict each other, e.g., higher numbers of disease-modifying antirheumatic
drugs (DMARDs) were described to increase adherence rates [49,50], whilst in another
study, higher numbers of previous DMARDs (biologic or other) were a predictor for
a reduced DMARD survival [51]. These findings, however, do not give reasons why
patients chose to stop the intake of DMARDs. Shorter drug survival may be related
to more severe disease and less efficacy, more toxicity, and/or the values, beliefs and
202 Enhancing Healthcare and Rehabilitation

experiences of patients. According to the World Health Organisation, the perspective

of patients, such as their motivation, values, beliefs, opinions, and needs, are essential
factors that need to be considered in non-adherence [47,52]. These values, beliefs, and
experiences of patients are the core focus of qualitative research [33].

eHealth
The evaluation of technological innovations, such as electronic recording and monitoring
of disease activity and PROMs via apps, is an important target for qualitative research
in order to investigate needs and attitudes about electronic data collection and sharing
PROM data between different clinical sites and researchers. Results demonstrated that
patients accepted electronic data sharing if this improved communication with healthcare
providers and the access to relevant RA information [53].
A qualitative focus group study explored the needs of RA patients concerning eHealth
technology support for medication use [54]. Results of the focus groups demonstrated that
patients especially needed informational, practical, and emotional support concerning
medication use. The use of eHealth technologies was considered to be useful for these
issues. Although patients addressed concerns regarding personal interaction with health
professionals, privacy and data security, and the quality and reliability of the online
information. Furthermore, the patients pointed out that eHealth technologies should be
used additionally rather than replacing current practices. Despite the patients’ perspec-
tives, health professionals’ views about the role of eHealth technologies for, e.g., web-based
educational resources for diagnostic criteria, clinical therapies, or dosage calculators are
also necessary. In a study by MacDonald et al. [55], healthcare professionals discussed the
shift of a very paternalistic physician-patient communication to a ‘two-way’ collaborative
conversation enhanced by eHealth technologies. In their opinion, Internet-based patient
platforms can support patients to share their disease conditions and provide possibilities
for discussing problems, as well as connecting and supporting each other. The health pro-
fessionals in this study also discussed ethical and practical concerns about the transition
of empowered patients, and the challenge to transfer this ideal into practice. The role of
false information about disease course or medications on the Internet and its challenging
necessity to steer the patients towards the correct path were important issues in the inter-
views as well.

Outcomes
Patients’ experience of disease activity compared to the physicians’/health professionals’
perspective was the focus of some recent qualitative studies. A study [56] using focus
groups revealed that patients with subjective high disease activity, but with low disease
activity estimated by the rheumatologists experienced more stress, difficulties in activities
of daily living, and had problems with medication intake. The non-satisfying relation-
ship also had a negative impact on the subjective estimation of the disease activity of
the patients. Furthermore, fatigue and pain significantly contributed to a worse disease
perception and were also discussed as a main reason for avoiding physical exercises and
activity in general.
Qualitative research could also reveal that patients with RA have different sets of
beliefs and apprehensions linked with their disease which commonly relate to psycho-
logical factors about the development, progression, and manifestation of their disease
and which had a major impact on their treatment expectations. These beliefs changed
The Impact of Qualitative Research in Rheumatology 203

over the course of the disease and were in most cases inappropriate from the medical
point of view. Psychological interventions and more in-depth physician explorations
with the patients could help to support the patients in reducing inappropriate beliefs and
treatment expectations, as well as anxieties and worries about the disease which would
enhance treatment adherence and improve long-term outcome [57].
The emphasis on the patients’ experience and PROMs have also led to the development
of organisations like the independent initiative Outcome Measures in Rheumatology
(https://omeract.org/). Outcome Measures in Rheumatology has also contributed to
the development and validation of clinical and radiographic outcome measures in RA,
osteoarthritis, psoriatic arthritis, fibromyalgia, and other rheumatic diseases. Patient
perspectives were considered by Outcome Measures in Rheumatology in various ways,
including active participation of patients and patient experts in study groups, as well as by
carrying out qualitative studies.

Most Commonly Used Methods in Qualitative Research in RA

For the development of PROMs, a combination of quantitative and qualitative methods is
essential to establish psychometric properties. Usually, the first draft of a questionnaire is
presented to experts in workshops or panel discussions and to patients in focus groups in
order to modify and reduce items before the questionnaire is assessed for reliability and
validity in a larger sample [58].
Depending on the research objectives and questions, qualitative methods in RA mainly
cover the following approaches: phenomenology, ethnography, and content analysis.
Phenomenology and content analysis provide the most commonly used qualitative methods
for data acquisition in healthcare research: interviews and focus groups. Both methods give
deep insights into patients’ and caregivers’ attitudes, perceptions, and experiences in a narra-
tive data form. Whilst individual interviews can give very elaborate patients’ and caregivers’
views on a specific topic, the group dynamics and interactions of a focus group can help to
gain data about different perspectives of the focus group members and also reveal controver-
sial topics. Ethnographic approaches commonly use observation(s) of patients in combina-
tion with interviews for cultural or social sensitive reasons [1], but also for the identification
of patient-physician/health professional communication concerning educational health and
therapy information [59]. Another option for analysing qualitative data are historical analyses
that use narrative data such as newspapers, journals and digital blogs or forums, and the use
of social media as well as non-verbal data such as artistic expressions of patients’ hands [1,60].

Quality of Qualitative Research

In all these approaches, stringent quality assurance methods need to be implemented to
prove the rigor and accuracy of the qualitative analysis. These might include peer review
of a part of the analysis, member checking of the accurateness of the results with the par-
ticipants, triangulation to a third external resource either literature or data generated by
means of a different method, and reflexivity of the researcher.
204 Enhancing Healthcare and Rehabilitation

Discussion
Although qualitative research has started to be used more commonly in healthcare
research as well as in medicine and the number of scholars who see its value is con-
stantly increasing, there are still some relevant barriers. First of all, qualitative research
employs a different research paradigm in that it celebrates and highlights the meanings
of individual concepts, a variability of experiences and demand reflexivity in the process
of data generation and analysis. Qualitative research therefore commonly involves small
sample sizes with in-depth data gathering and analysis that will lead to a deeper under-
standing of a certain phenomenon with a variety of experiences, rather than using large
sample sizes to quantify a certain phenomenon. For these reasons, qualitative research
is essential to explore reasons for behaviour, motivation, possibilities for implementation
of lifestyle modifications in patients’ lives, as well as views on new technologies includ-
ing eHealth. Several examples in RA have been described in the previous sections which
can hardly be replaced by quantitative study designs. Furthermore, a qualitative study
can be a methodologically strong first step in the development or adaptation of PROMs.
Likewise, qualitative results can be used for generating hypotheses, in requirements engi-
neering, in systemic modelling approaches, in evaluation studies, and for mixed methods
approaches – to complement quantitative data. And vice versa, quantitative data can also
be part of qualitative studies, examples are descriptive statistics and statistical models.
Most important in qualitative research is that the authors describe and justify each
single step of their research process. Despite the use of rigorous methods to justify and
prove accuracy of qualitative data and findings, it is still difficult to publish qualitative
studies in high impact journals and receive competitive funding. Unfortunately, qualita-
tive research is often judged against quality criteria for quantitative research, especially
regarding sample sizes, generalisability, objectivity, reliability, or validity of the research
data. However, qualitative research needs to strictly follow a research paradigm which
is different from quantitative research in its epistemological and ontological theories.
Qualitative research, thus, has its own reporting criteria, e.g., the consolidated criteria
for reporting qualitative research guidelines [61]. These involve a 32 item checklist which
can be used before submitting a qualitative research study to a journal in order to face
the most commonly used criticisms and providing all the information necessary for the
reviewers such as information on the analysis (number of coders, code structure, etc.),
providing the interview guide, and argumentation for the use of qualitative research [1].
In conclusion, qualitative research in RA has contributed substantially to a deeper
understanding of patient perspectives, their motivations and reasons for behaviour, as
well as a comprehensive bio-psycho-social understanding of the living environment of
human beings.

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13
Challenging Assumptions about ‘Normal’
Development in Children’s Rehabilitation:
The Promise of Critical Qualitative Research

Yani Hamdani and Barbara E. Gibson

CONTENTS
Introduction to Critical Qualitative Research ......................................................................... 209
Problematising Policies on Transition to Adulthood: A Research Example ....................... 210
Background .................................................................................................................................. 211
Purpose and Study Aims ........................................................................................................... 212
Conceptual Approach................................................................................................................. 212
Data Sources................................................................................................................................. 213
Analysis Methods........................................................................................................................ 214
Results ........................................................................................................................................... 215
Documents .............................................................................................................................. 215
‘Normal’ Ways of Being and Becoming an Adult ......................................................... 215
Parent Accounts........................................................................................................................... 216
Pursuing ‘Normal’ Adulthood to the Extent Possible ...................................................... 216
Summary ...................................................................................................................................... 218
Implications for Children’s Rehabilitation .............................................................................. 218
Promise of and Future Directions in Critical Qualitative Research ..................................... 220
Conclusion ................................................................................................................................... 221
References .................................................................................................................................... 221

Introduction to Critical Qualitative Research

Critical perspectives draw attention to the sociopolitical dimensions inherent in research
and practice and share a key premise of rejecting prevailing notions of science as being
‘value-free’ (Eakin, Robertson, Poland, Coburn, & Edwards 1996; Green & Thorogood
2018). Rather, critical approaches seek to make social values and assumptions – whether
hidden or unacknowledged – visible, particularly in research aimed at understanding
and addressing social phenomena (Eakin et al. 1996; Green & Thorogood 2018; Kincheloe,
McLaren & Steinberg 2011). By identifying these assumptions, we can examine how they
shape the aims of rehabilitation and their effects on young disabled people when they
underpin and are enacted in practice. For example, critical disability scholars argue that
societies value and are structured around able bodies. Thus, people with physical, cogni-
tive, and other impairments are construed as disabled and experience social disadvantage

209
210 Enhancing Healthcare and Rehabilitation

and marginalisation (Hammell 2006; Hughes 2009). Examining these sorts of assumptions
through critical research can open up possibilities for mitigating unintended harms and
rethinking the aims of rehabilitation.
Critical research traditions are explicitly political and aimed at emancipating groups by
focusing on social change rather than changing individuals (Gibson & Teachman 2012). They
aim to unpack the social, political, and historical conditions that contribute to establishing
assumptions about ‘proper’ ways of being and doing for the purpose of revealing how power
operates in social relations (Eakin et al. 1996; Foucault 1980; Gibson 2016; Gibson, Nicholls,
Setchell & Groven 2018; Kincheloe et al. 2011). In critical research, power is understood to
have many dimensions (Eakin et al. 1996; Gibson et al. 2018). For example, Lukes (1974)
identifies three dimensions of power. One dimension can be described as overt, in which
certain groups have social dominance or privilege over other groups (e.g., non-disabled
people over disabled people, adults over children). This dominance or privilege may be
inadvertent or go unrecognised. A second, more subtle dimension of power is reflected
when inequities amongst groups are recognised, yet remain unresolved or unaddressed
(e.g., systemic sexism or racism) (Gibson et al. 2018). A third dimension involves covert
forms of power, in which particular ways of thinking about how to be or to act in society
become privileged and valued over other ways of thinking. This form of power operates to
produce conditions of disadvantage or marginalisation for some groups in society (Bacchi
2009, 2012; Foucault 1980; Njelesani, Teachman, Durocher, Hamdani & Phelan 2015). For
example, guided by notions of normal development, rehabilitation practices that promote
the transition to adulthood for young disabled people may inadvertently disadvantage
some people, such as young people labelled with intellectual and developmental disabilities
(IDD), who are unable to or experience challenges in achieving typical adult roles and
milestones (e.g., employment, independent living, moving out of the family home).
Critical qualitative research in healthcare and rehabilitation aims to examine taken for
granted assumptions, including those related to normalisation and normal development,
to reveal how they shape knowledge in particular ways that become taken for granted as
‘true’ (Gibson 2016; Hammell 2006, 2015). By identifying and unpacking these assump-
tions, we can examine how they shape the aims of rehabilitation and their effects on young
disabled people when enacted in practice. A critical approach proposes that notions of
normal development can be questioned to reveal and mitigate any unanticipated harm-
ful effects on young people. The idea is not to ‘criticise’, as in find fault in a disapproving
way, but rather to engage in professional self-scrutiny that ‘makes the familiar strange’ or
imagines possibilities for how ‘things could be otherwise’ (Gibson et al. 2018). In general,
critical research traditions are explicitly political, aimed at emancipation, and focused on
mitigating unintended harms. On this note, we now provide an empirical example involv-
ing examining assumptions about normal development in transition to adulthood poli-
cies to illustrate the contributions that critical qualitative research can make in advancing
children’s rehabilitation.

Problematising Policies on Transition to Adulthood: A Research Example

This study was led by the first author (Yani Hamdani) as part of her doctoral work and
arose from her experiences as an occupational therapist developing and implementing
transition to adulthood programs in a children’s rehabilitation hospital and questioning
Challenging Assumptions about ‘Normal’ Development in Children’s Rehabilitation 211

their impact on the health and daily life circumstances of young disabled people and their
families. The study design included analysis of three documents relevant to public poli-
cies on transition to adulthood and qualitative interviews with 13 parents of young people
labelled with IDD. Our analysis revealed that taken for granted assumptions about normal
ways of being, becoming, and conducting oneself as an adult shaped implicit understand-
ings of the ‘disabled child’ as problematic and ‘in need of’ intervention in comparison to
the ‘non-disabled child’. Embedded in transition policies, these assumptions had multiple
effects, both beneficial and harmful on young people labelled with IDD and their parents.
The study results have implications for rethinking notions of normal development and
traditional indicators of adulthood (e.g., independence, employment) as guiding principles
for transition programs and for children’s rehabilitation more broadly. We describe the
study and provide examples from the documents and interviews to illustrate the critical
approach taken in our analysis.

Background
Transition to adulthood for disabled youth has been identified as a public policy problem
in many advanced democracies in recent years. In the province of Ontario, Canada, the
problem is predominantly framed as a service access issue, particularly when young
people ‘age out’ of paediatric health services by 19 years of age and public education by
21 years of age, and must transfer to adult-oriented programs and services. In response,
transition policies and practices have been developed which aim to: (1) prepare youth
for leaving public services funded for children, (2) prepare them for roles and activities
associated with adult life, and (3) link them to adult-oriented services and supports.
These policies and programs are shaped by both explicit and implicit assumptions about
disability, normal development, and what constitutes a proper adulthood. Enacted in
policies and practices, these assumptions can have implications for how transition to
adulthood is understood as a problem and addressed in children’s rehabilitation. Thus,
they have consequences for young disabled people who are the target of transition inter-
ventions, as well as for their parents who provide them with care and support. For this
research example, we focus on our examination of normal development in Ontario-
based transition policies.
Normal development is a primary organising concept in children’s rehabilitation. Based
on the attainment of step-wise milestones pegged to pre-existing norms, frameworks
of normal physical and cognitive development are generally accepted in public policies
and practices designed to serve disabled children (Priestley 2003). For example, the idea
of ‘developmentally appropriate’ care abounds in best practice guidelines in adolescent
medicine (American Academy of Pediatrics 1996; Canadian Paediatric Society 2007; Rosen
et al. 2003). The variety of checklists, frameworks, and textbooks focused on promoting and
supporting normal development attests to its significance in guiding not only rehabilitation
practices, but also health and social care, education, and parenting practices more broadly.
Normal development is primarily understood as a relatively predictable trajectory of
progressively achieved physical, intellectual, emotional, and social milestones from
childhood to adulthood (Gibson, Teachman & Hamdani 2015, 2016; Hamdani, Mistry, &
Gibson 2015). The goals and expected outcomes of normal development are defined
by the perceived norms and competencies for adult life (Priestley 2003). Key indicators
212 Enhancing Healthcare and Rehabilitation

of a ‘successful’ adulthood include independent living, employment, financial self-reliance,

and forming intimate relationships. Children are expected to progress along a normal
social and developmental trajectory, to the extent possible, on the journey to adulthood.
Normal development, as a concept, can be helpful in guiding rehabilitation practices for
many children and youth, including children and youth labelled disabled. Yet, as we have
discussed previously (Gibson, Teachman, & Hamdani 2015, 2016), when examined from a
critical perspective, these practices can have some unintended harmful consequences for
young people whose developmental and social trajectories differ from the norm, such as
young people labelled with IDD.

Purpose and Study Aims

The purpose of the study described here was to understand how transition is problematised
in Ontario policies and the implications for the health and daily lives of youth labelled
with IDD and their parents (Hamdani 2016). By problematise, we mean examine how
the issue of transition is constructed as a particular kind of problem in particular
social and political contexts. In our case, the Canadian context is generally referred to
as an advanced democracy or Western industrialised society (other examples include
Australia, United States, or United Kingdom). The aim of this study was: (1) to identify
and examine taken for granted assumptions particularly about childhood disability
and normal development embedded in Ontario’s transition policies and (2) to explore
the effects of policies shaped by these assumptions on the parents of young people
labelled with IDD. Parents were the focus of this particular study because they have
advocated for and navigated policies and services on behalf of their children labelled
with IDD from birth to early adulthood, thus, have first-hand experiences of the effects
over the life course. In addition, family caregivers of young people with severe and
complex disabilities are often largely responsible for their on-going care and support
into adulthood and beyond. Research ethics approval for the study was received from
the University of Toronto.

Conceptual Approach
A critical lens guided this study and is reflected in the research aims and methodologies.
We also drew on critical scholarship on normal development as a lens for analysis. Critical
scholars argue that developmental discourses (patterned ways of thinking) (Lupton 1992)
are used to privilege and normalise particular world views about the proper outcome
of development and have introduced the idea of ‘developmentalism’ (Burman 2012;
Walkerdine 1993). Riggs (2006) describes developmentalism as the ‘particular logic that
surrounds dominant accounts of childhood, wherein children are presumed to follow a
relatively proscribed pathway to reach maturity’ (p. 58). Normal development is assumed
to take a specific form, whereby children develop certain skills and attributes that assist
Challenging Assumptions about ‘Normal’ Development in Children’s Rehabilitation 213

them in becoming good, ‘contributing’ adult citizens (Gibson, Teachman, & Hamdani
2015, 2016). Said differently, a particular kind of adulthood is generally accepted as the
right and natural goal of child development – one in which independence, productivity
(mainly paid work), and contribution to society are valorised. These ideas are embedded
in health, rehabilitation, and social policies focused on developing ‘the child’. Whilst
well-intended – developmentalism logics will necessarily aim to minimise deficits and
maximise functioning in ways that reproduce ableist notions of good and poor life quality.
Moreover, critical scholars argue that classic child development theory constructs children
as ‘incomplete adults’ (Priestley 2003) or ‘adults-in-the-making’ (Burman 2012; Walkerdine
1993). Thus, young people who do not or cannot ‘successfully’ achieve particular ‘adult’
skills of independence remain as ‘adults-in-the-making’, experiencing exclusion from
full citizenship and social participation in adulthood. We drew from this scholarship as a
critical lens for analysing our data.

Data Sources
Three Ontario-based documents and interviews with 13 parents of young people labelled
with IDD were the data sources for analysis. The documents represented policies or
proposed courses of action in publicly funded rehabilitation, education, and social services
relevant to transitions for young disabled people (see Table 13.1). They were chosen
because they were the most influential texts in shaping policies and practices in each of the
three public sectors.
Twelve mothers and one father from across the Greater Toronto Area in Ontario
participated in semi-structured interviews. Their children had been diagnosed with Down
syndrome, autism, intellectual disabilities, and cerebral palsy and were in the age range
of 17 years old–27 years old. This was an important step, as the analysis of documents on
their own would not reveal the effects of underlying assumptions about disability and
transition to adulthood on young disabled people and their families who experience the
policies in action. We were interested in how these assumptions were taken up, echoed,
or resisted by the people experiencing the enactment of policies in their daily lives, in our
case, parents of young people labelled with IDD.

TABLE 13.1
Data Sources: Documents Representing Transition Policy in Three Publicly Funded Sectors
Public Sector Document

Rehabilitation ‘The Best Journey To Adult Life’ for youth with disabilities: An evidenced-based
model and best practices guidelines for the transition to adulthood (Stewart et al.
2009)
Education Transition Planning: A Resource Guide
(Ontario Ministry of Education [MEDU], 2002)
Social services (specific to IDD) Provincial transition planning framework: Transition planning for young people
with developmental disabilities (Ministries of Community and Social Services
[MCSS] and Child and Youth Services [MCYS], 2011)
214 Enhancing Healthcare and Rehabilitation

Analysis Methods
The study drew on a policy analysis approach called ‘What’s the problem represented
to be?’, which emphasises problem-questioning, rather than problem-solving associated
with conventional policy analysis (Bacchi 2009). It takes the position that policymaking
creates particular understandings of what the problem is and what should be done about
it. The aim is not to solve the issue per se, but rather to unpack underlying assumptions
and consider their potential effects on the target population. In the study, we used this
approach to understand how social values and assumptions about disability and child
development shaped understandings of the policy issue, what counted as a successful
transition to adulthood, and the potential consequences for young disabled people and
their families. In doing so, we drew on critical scholarship on normal development to
examine how key ideas, such as disability, adulthood, and independence, were represented
and applied in the policies.
Our analyses involved interrogating the documents’ texts and interview transcripts
guided by a series of six interrelated questions from Analyzing Policy: What’s the problem
represented to be? (Bacchi 2009, p. xii).

1. What’s the ‘problem’ represented to be in a specific policy?;

2. What presuppositions or assumptions underlie this representation of the ‘problem’?;
3. How has this representation of the ‘problem’ come about?;
4. What is left unproblematic in this problem representation? Where are the silences?
Can the ‘problem’ be thought about differently?;
5. What effects are produced by this representation of the ‘problem’?; and
6. How/where has this representation of the ‘problem’ been produced, disseminated
and defended, and how could it be questioned, disrupted, and replaced?

The analysis involved going back and forth between these questions to dig deeper – that
is, to go below the surface of explicitly stated ideas to reveal implicit assumptions about
disability, development, and transition to adulthood. We looked for key concepts, binaries
(e.g., normality/disability), and categories (e.g., childhood, adulthood) as analytic devices
for unpacking both explicit and implicit meanings that shaped how the issue of transi-
tion was constituted as a problem. This involved an iterative process of analysis, includ-
ing writing analytic summaries and reflexive memos, discussing them in PhD committee
meetings, iteratively engaging with the data and critical scholarship on disability and
development, and documenting decisions in order to support a transparent and rigorous
analysis. These methods allowed for an examination of what assumptions about disability
and normal development were contained within transition policies and to explore their
intended and unintended consequences for young people labelled with IDD and thus their
parents.
Challenging Assumptions about ‘Normal’ Development in Children’s Rehabilitation 215

Results
Documents
‘Normal’ Ways of Being and Becoming an Adult
Across the documents, the transfer from child- to adult-oriented services was explicitly
identified as problematic. Yet, our analysis revealed underlying assumptions about ‘normal’
ways of being and becoming an adult. These assumptions shaped implicit understandings of
what was held problematic, largely focused on social expectations to become as independent
and productive as possible in adult life. All of the documents focused specifically on disabled
youth, implying that their transitions to adult life were problematic in some way compared to
another group – presumably non-disabled youth. Disabled youth were targeted for intervention
when they reached an arbitrarily determined age when they were no longer eligible for
child-mandated (up to 18 years old–21 years old) health, education, and social services. For
example, the rehabilitation document stated that it addressed the ‘transition to adulthood
across the continuum of rehabilitation services’ (Stewart et al. 2009 p. 6). Similarly, the social
services document addressed the issue of ‘lack of planning and inadequate transition support’
specifically for young people labelled with IDD and aimed to foster a ‘smooth transfer
to adult services and a good transition experience’ (Ministry of Community and Social
Services & Ministry of Child and Youth Services 2011, p. 3). The explicitly stated purpose of
the education document was ‘to facilitate transition planning from school to work, further
education and community living for exceptional students’ (Ministry of Education 2002, p. 3),
meaning students with disabilities. Interestingly, gifted students also fell under the category
of ‘exceptional students’, but were not required to have a transition plan. On the surface, the
problem was construed as a service transfer issue in the documents. However, digging below
the surface of these texts revealed implicit assumptions about proper and socially expected
ways of being, becoming, and conducting oneself as an adult.
The problem of service transfer rested on an inherently understood problem in which the
social and developmental trajectories of young disabled people were judged inadequate or
at risk of failure because they deviated from some preconceived norms. For example, the
education document stated:

(A)lmost all students will need or wish to engage in productive employment, supportive
employment, or meaningful volunteer work (MEDU 2002, p. 20).

Suggested transition goals included:

(I)ndependent living in the community and daily living skills for independence (MEDU
2002, p. 21, 24 & 27).

These statements suggested the relative importance and value placed on particular traits
and activities in adulthood, that is, productivity (mainly work) and independence, which
216 Enhancing Healthcare and Rehabilitation

all students are expected to achieve or at least approximate. Similarly, the social services
document, which focused specifically on young people with IDD, stated that transition
planning should:

…help the young person prepare for adulthood and to plan for adult services in a man-
ner that promotes social inclusion, greater self-reliance and as independent a life as
possible (MCSS & MCYS 2011, p. 9).

The terms ‘self-reliance’ and ‘independent’ are not explicitly described in the document,
rather the importance and value in achieving them were assumed and unquestioned. Thus,
taken for granted assumptions about normal indicators of a successful adulthood, largely
centred around achieving independence in employment and daily living, were embedded
in the documents. An emphasis on achieving independence to the extent possible reflects its
high social value as an adult trait, implying that dependence is acceptable in childhood, but
less desirable and to be avoided in adulthood. Collectively, assumptions about normal ways
of being and becoming an adult in the documents functioned to represent young disabled
people as ‘in need of intervention’ because of their risk of dependency on others in adult life.
The rehabilitation document differed somewhat from the other two in that it did not pro-
mote the achievement of typical or ‘normal’ adult roles and activities, but instead worked
to reframe notions of ‘active citizenship’:

(T)he goal of transition should not be focused on a series of outcomes such as employ-
ment, independent living and hobbies; but rather, active citizenship and involvement in
meaningful occupations. (Stewart et al. 2009, p. 20)

Active citizenship as a goal is a rather unique idea in healthcare and rehabilitation and
is interesting to consider for supporting social participation of young disabled people.
However, what is meant by ‘active’ is not explicitly described in the document, thus is left
open to interpretation. The descriptor ‘active’ suggests that a particular type of citizen is
socially valued and preferred compared to, for example, an ‘inactive’ or ‘passive’ citizen.
Thus, the idea of active citizenship potentially carries with it expectations for participation
or contribution in particular ways, but if or how this would differ from more traditional
roles of independence and paid work is unclear.

Parent Accounts
Pursuing ‘Normal’ Adulthood to the Extent Possible
For the most part, parents reproduced ideas reflected in the documents about achieving
or approximating as close to a ‘normal’ developmental trajectory to adulthood as possible
for their children. What was interesting was the multiple and creative ways they reformu-
lated the meaning of independence to reflect their child’s and family’s circumstances. For
example, Jane (all names are pseudonyms) stated that:

‘It’s kind of ironic, but for Joy (her 24-year-old daughter labelled with Down syndrome)
to become more independent as she gets older, she is also going to have to become more
co-dependent with other people.’

Similarly, Daniel discussed how he envisioned a ‘…supported life independent of us. We’d
still be part of it…’ for his daughter (25 years old, labelled with intellectual disability).
Challenging Assumptions about ‘Normal’ Development in Children’s Rehabilitation 217

These accounts reflect a view of independence that was not about their daughters doing things
for themselves. Rather, it was about shifting their dependence to other people and supports,
and in doing so, approximating an imagined ‘typical’ relationship between parents and their
adult children. Yet, the parents still recognised dominant social expectations and value placed
on independence in adult life, including approximating independence in daily life manage-
ment and decision-making. Thus, similar to the documents, the parents’ accounts reflected pre-
vailing social values and expectations about an independent adulthood in Western societies.
The parents also reproduced ideas about the ideal outcomes for adult life following high
school. For example, Evelyn, a mother, described:

It’s always the same route. You graduate from high school and you continue on with
education in school to have some training in order to position yourself in society.

Her comment revealed an inherent assumption that the ‘same route’ or trajectory
from school to further education and eventual employment was expected. Moreover,
her comments suggested that it was important to pursue this path to establish oneself
financially and socially in adult life. She did not question or consider if another route
might be more realistic, feasible, or better for her daughter (who was 27 years old and
labelled with intellectual disability). Rather, her account reflected that she had internalised
social values and beliefs about a productive, independent adulthood, which shaped her
transition planning goals towards these ends.
The parents also shed light on some of the effects of the challenges they experienced in
planning for their children’s transition to adult life. For example, Linda (whose son was 19
years old and on the autism spectrum) stated:

We do need transitions [planning & support]… As parents, at the time when you’re most
tired, everything stops. Special Services at Home1 gets yanked, if you’re lucky enough to
get it now at 18, and school stops. You just enter a wasteland, at the time that you need
the supports most, psychologically.

In this excerpt, Linda describes the significant fatigue, uncertainty, and distress she
experienced even with transition planning and supports, which reflected the parents’
accounts as a whole. They also discussed other consequences for their lives, such as
deferring their own employment, future retirement, and social time with their own
friends in order to support their adult children – consequences that were not accounted
for in the transition documents. In addition, both young disabled people and their
parents experienced social disadvantages and exclusion from mainstream social life –
young disabled people because they failed to achieve developmental markers that afford
access to the social roles and activities that signify adult status, and parents because they
were expected to fulfil their social responsibilities of providing care and support for
children until these markers were achieved, even if their achievement was challenging
or not possible.

1 Special Services at Home is a program publicly funded and managed by MCSS in Ontario, which helps fami-
lies who provide care for a child identified as having developmental and/or physical disabilities to pay for
special services (e.g., skill development programs, respite services) at home or in the community.
218 Enhancing Healthcare and Rehabilitation

Summary
Our analysis revealed that underlying the explicitly identified problem of transition
to adulthood was an implied problem of disabled children being at risk of dependency and a
non-productive adulthood. Taken for granted assumptions about normal development –
that is, normal or socially preferred ways of being, becoming, and conducting one’s
self as an adult – shaped an implicitly understood problem represented as the ‘disabled
child’. Represented in this way, disabled children were identified as being ‘in need of’
normalisation and intervention compared to non-disabled children because they were at
risk of failing to achieve a typical social and developmental trajectory from childhood to
adulthood. In other words, they were at risk of being dependent on others for financial and
personal care and support in adult life. These outcomes were to be minimised or avoided
to the extent possible.
Taken for granted assumptions about normal development functioned to create a social
hierarchy in which particular ways of being and doing were privileged and preferred over
less desired ways. Embedded in transition policies and reproduced in parent accounts,
these assumptions had multiple effects. Some are generally considered beneficial effects for
young disabled people, such as feelings of success for working towards or achieving tradi-
tional transition goals, even if modified. Yet, they also had unanticipated harmful effects for
some people. For example, both young people labelled with IDD and their parents experi-
enced marginalisation and exclusion from mainstream community life (e.g., employment,
social opportunities). Parents also experienced stress and fatigue whilst spending count-
less time and effort to pursue and support transition goals, such as post-secondary educa-
tion, employment training, or skills for independence, for their children. Shedding light on
these types of harms, which were not addressed in the transition policies in any substan-
tial way, offers opportunities to rethink the aims of transition interventions in children’s
rehabilitation.

Implications for Children’s Rehabilitation

Our critical research example highlights several implications for policies and practices
related to transition to adulthood, and to children’s rehabilitation more broadly. First and
foremost, it illuminates the need for a critical rethink of the emphasis on ‘normal’ – normal
bodies, normal development – towards embracing diverse ways of being, becoming, and
doing for young disabled people. For example, transition policies may unintentionally
de-emphasise other possible, atypical ways of living a good life as an adult that may actu-
ally be healthier, or more feasible, desirable, or suited to the life circumstances of young
disabled people and their parents. More emphasis can be placed on making and maintain-
ing friendships or engaging in social and recreation activities as valuable goals in their
own right, rather than pursuing independence and employment as the main or only goals.
Moreover, rehabilitation programs can direct attention to fostering positive disability iden-
tities and drawing on strength-based rather than deficit-focused approaches in interven-
tions. Shifts in thinking about ‘normality’ as the guidepost for disability, development,
and transition to adulthood are beginning to emerge, particularly in the field of child-
hood disability and rehabilitation (Gibson et al. 2016; Gibson & Teachman 2012; Gibson,
Teachman & Hamdani 2015, 2016; Gibson et al. 2012; Hamdani, Mistry, & Gibson 2015;
Challenging Assumptions about ‘Normal’ Development in Children’s Rehabilitation 219

Njelesani et al. 2015; Phelan 2011; Phelan & Ng 2015). Such approaches would support
young disabled people to create and lead lives that are relevant to their own desires, goals,
and life circumstances.
As a point of clarification, we are not suggesting that conventional rehabilitation
approaches focused on addressing impairments and developmental deficits are unimport-
ant or unnecessary or that pursuing traditional indicators of adulthood be abandoned or
avoided. Rather, we suggest that a variety of traditional and alternative options for liv-
ing a good life can be discussed, supported, and given equal attention and consideration
in rehabilitation encounters, including sensitive discussions with young disabled people
and their families about the potential beneficial and harmful consequences of any option.
At a minimum, young disabled people and their families should be exposed to a number
of ways for living a good life into adulthood and be given opportunities to evaluate the
goals and options that make sense for their life circumstances.
Adopting a life course view in children’s rehabilitation can highlight social understand-
ings of what roles and responsibilities are expected at different ages and life stages and
how they contribute to shaping understandings of disability (Priestley 2003). As we have
shown, adults are expected to develop traits of independence for fulfilling roles and respon-
sibilities associated with employment and daily life management in Western societies. In
contrast, it is acceptable for children to be dependent on their parents until they develop
skills and competencies to fulfil these roles and responsibilities themselves. Thus, socially
accepted roles and responsibilities at different life stages shape how generational catego-
ries, such as childhood and adulthood, are characterised and understood in relation to one
another (Priestley 2003). Childhood, adolescence, and adulthood are important concepts
in themselves and form a social stratification system based on generational relationships,
much like gender or class relationships (Priestley 2003). They are imbued with cultural
meaning and structure in relation to one another that can be examined and connected to
understandings of disability and normal development. Adolescence is considered a criti-
cal transitional period between dependency in childhood and independence along the
road to adulthood (Holmbeck 2002). Several key developmental tasks are associated with
adolescence, including identity formation, emotional development, formation of intimate
relationships, cognitive development, and accomplishment of formal education goals,
community inclusion, and independent living goals (Wood, Reiss, Ferris, Edwards, &
Merrick 2010).
Young disabled people are expected to know about their diagnoses, medical condi-
tions, medications, and equipment; to develop skills to self-manage their health and
daily lives; and to become proficient in accessing health and social services. The expec-
tation is that by achieving these ‘developmental tasks’, young disabled people will be
prepared for adult life. ‘Successful’ childhood is thus understood and promoted as pro-
gressive movement from complete physical and social dependence to the highest pos-
sible level of independence. It is implicitly understood that dependency in adulthood is
to be avoided to the extent possible. This pervasive assumption grounded in notions of
normal development shapes the aims of children’s rehabilitation, social care, and educa-
tion, and powerfully influences how disabled young people understand themselves and
their place in the world.
Rethinking childhood disability and development in children’s rehabilitation can also
account more strongly for the entwined life course trajectories of young disabled people and
their families. Beyond embracing a variety of trajectories for young people themselves, greater
emphasis can be placed on the life course trajectories of their parents, and other important
people in their lives (e.g., siblings, extended family members, paid and unpaid caregivers).
220 Enhancing Healthcare and Rehabilitation

Parents are expected to take on extraordinary roles and extended responsibilities to foster
as close to a normal life course trajectory as possible for their children, particularly children
labelled with IDD, yet their own trajectories are neglected or ignored in public policies and
practices. A way forward involves thinking about interconnected life course trajectories of
families. Such a perspective would include considering the significant unpaid work con-
ducted daily by parents whose children rely on them for personal care and support into
adulthood, and also in creating and implementing transition plans. Moreover, this lens can
draw attention to the ways in which the life trajectories of these parents follow different
paths than parents of non-disabled children when it comes to providing ongoing and neces-
sary personal and financial support into adulthood and beyond.

Promise of and Future Directions in Critical Qualitative Research

Critical research holds promise for revealing and addressing taken for granted assump-
tions, logics, and principles that drive practices and structure programs in children’s reha-
bilitation, which other approaches often miss, ignore, or fail to acknowledge. Research in
this vein has the potential to disrupt and challenge ingrained ways of understanding and
addressing childhood disability and normal development towards creative approaches
that acknowledge the diverse needs and circumstances of children and families. Future
research can examine what constitutes a successful outcome for young people who do not
follow a typical social and developmental trajectory. For example, what would a successful
transition to adulthood look like if an array of ways of being, becoming, and doing over
the life course were valued, rather than ways associated with the milestones and markers
of normal development? This research can explore alternative options for living a good life
in adulthood, which can inform changes to the aims of transition policies and practices,
whilst also considering parents and families who are often involved in supporting these
options beyond the time point in which young disabled people are no longer eligible for
children’s health, education, and social services.
Further work can be informed by a disabled children’s childhood studies approach
to inquiry. The main premise of this approach is that disabled children and their child-
hoods should be valued in their own right – not in comparison to other groups and
social categories (Curran & Runswick-Cole 2014). Moreover, this approach explicitly
addresses the experiences of disabled children in the contexts of both the Global North
and Global South, with the former generally associated with wealthy, Western indus-
trialised societies (Curran & Runswick-Cole 2014). In addition, a disabled children’s
childhood studies approach begins with the concerns and perspectives of young dis-
abled people, and their families and allies, rather than researchers, policymakers, and
service providers. Adopting this approach in future research, coupled with theorising
disabled children’s life course trajectories in their own right rather than in comparison
to normal developmental and social trajectories, can inform new ways of understand-
ing life stages and moving across them as a young disabled person. In addition, further
research that compares how life course trajectories of disabled children are thought
about in the Global South compared to the Global North can shed new light on the
social values and assumptions about childhood, disability, and development embedded
in different social, political, and cultural contexts, and open possibilities for rendering
them changeable.
Challenging Assumptions about ‘Normal’ Development in Children’s Rehabilitation 221

Conclusion
In this chapter, we have made a case for the value of critical qualitative rehabilitation
research. Using the example of transitions policy for young people with IDD, we have
outlined the potential contributions of a critical approach to knowledge generation in
children’s rehabilitation. Critical approaches identify the taken for granted assumptions
that structure and guide actions, including policies, practices, research, and teaching, to
reveal unintended and sometimes harmful effects on the groups they aim to serve and
help. In children’s rehabilitation, the most pervasive and deeply ingrained assumptions
are related to how childhood disability and development are understood as problems that
need to be fixed and addressed through policies, programs, and practices of normalisation.
Understanding rehabilitation as a social process with consequences beyond its intended
goals requires different kinds of methodologies that do not assume in advance what counts
as a good or poor outcome. The inherent promise of critical qualitative research is to open
possibilities for supporting multiple ways for young disabled people and their families to
live healthy and well over the life course.

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14
Bringing Qualitative Research into Rehabilitation –
A Worked Example of Developing a Rehabilitation
Program for Patients with Fibromyalgia

Anne Marit Mengshoel and Merja Sallinen

CONTENTS
Introduction .................................................................................................................................223
Discourses Framing the Clinicians’ Rehabilitation Context ................................................. 224
A Brief Review of Condition-Oriented Evidence on Fibromyalgia .....................................225
A Brief Review of Person-Oriented Evidence on Fibromyalgia ........................................... 227
The Working Process of Developing a New Rehabilitation Programme ............................ 228
The Context and Participants ............................................................................................... 228
The Researchers’ Pre-understandings ................................................................................. 229
Workshops and Participants’ Roles ..................................................................................... 230
Bringing Qualitative Studies and Inquiry into the Process .................................................. 230
Reflecting Across Qualitative Studies and Clinical Experiences ..................................... 230
Thematically Focused Explorative Reflections .................................................................. 231
Importance of Writing up Summaries................................................................................. 231
Dilemmas Experienced in Clinical Practice ............................................................................ 231
A Diagnosis with Various Meanings in Clinical Practice ................................................. 232
Ambiguous Understandings of Acceptance and Normality ........................................... 232
Ambivalences in Interpreting Outcomes ............................................................................ 233
Uncertainties Related to Own Professional Role ............................................................... 233
The Bricolage of Knowledges Underpinning the New Programme ...................................234
The Programme’s ‘Why’........................................................................................................234
The Programme’s ‘What’ ...................................................................................................... 235
Final Reflections about What We Learnt ................................................................................. 236
References .................................................................................................................................... 237

Introduction
Fibromyalgia (FM) is a chronic musculoskeletal pain condition with no known cure.
Present clinical guidelines are based on effect studies showing limited effects, and the
guidelines have not taken into account whether such programmes are found meaningful
to patients. Qualitative studies describe how complex and challenging it is for a patient to
live with FM, but suggest that patients can overcome it and even become symptom-free
again. The gap between quantitative and qualitative evidence was the reason the present
authors initiated a project to develop a new rehabilitation programme for patients with FM.
223
224 Enhancing Healthcare and Rehabilitation

The programme was developed in collaboration with a multidisciplinary team with clinical
experiences in delivering group-based educational programmes for patients with inflam-
matory or degenerative musculoskeletal diseases, as well as FM. In the present chapter,
we explore our joint efforts in reading and discussing qualitative studies to develop the
new rehabilitation programme. To develop a logical interconnected programme, we had
to unpack and reflect on the various knowledges underpinning our understandings. First,
we briefly describe some of the discourses embedded in rehabilitation that came into play
during our work, followed by a short review of the evidence about the FM condition and
patients’ experiences. We conclude by describing our working process, dilemmas in clini-
cal practice, and how a logical, interconnected programme was reached.

Discourses Framing the Clinicians’ Rehabilitation Context

According to Wade and de Jong (2000), rehabilitation aims to help patients with functional
restrictions acquire knowledge and skills to maximise their participation in social settings,
minimise pain, and relieve distress experienced by the patient, family, and caregivers.
However, rehabilitation is a hybrid discipline with theoretical roots in the disciplines of
the various health professionals engaged in the field, as such, it lacks a unique and unified
theory detailing the parameters of rehabilitation practice (Siegert et al. 2005). Furthermore,
perhaps more than in any other area of medicine and healthcare, rehabilitation practice is
highly influenced by societal views on disability and disabled people, as well as people’s
general expectations regarding getting appropriate and effective help from health services
when needed. Rehabilitation practice is also highly framed by health politics and econom-
ics, which determine what is possible to deliver. Hence, health professionals have to take
into consideration several discourses beyond their professional knowledge. In addition,
there are discourses embedded in clinical practice that determine what the best clinical
practice is and how it should be delivered. In the process of developing the rehabilitation
programme, the clinicians frequently referenced discourses from evidence-based practice
(EBP) and patient-centredness.
EBP is broadly embraced by health professionals, also within the field of rehabilitation
(Dijkers et al. 2012). The idea behind EBP is that practice should be informed by the best evi-
dence from research (Jacobson et al. 1997). The scientific studies included in the EBP model
mainly address issues around a disease or illness condition and how a condition should be
treated (Greenhalgh 2014). In other words, EBP relies on condition-oriented evidence. Somatic
conditions are often described in terms of typical symptoms, biological dysfunctions or deficits
related to cause(s), manifestations of a disease, and typical functional limitations considered to
be consequences of a disease (Hofmann 2001; Wulff et al. 1999). Therapies are tailored to these
deviations in order to normalise them, and effects of therapies are determined by assessing
if the therapies lead to less typical condition-related deficits and consequences (van Riel and
Fransen 2005). Evidence from randomised clinical trials is considered to be the most reliable
design for determining the most effective and appropriate therapy (Anjum et al. 2015). In order
to ensure that the effects are likely to happen across individuals and contexts, personal and
contextual factors are controlled for in the design (Kerry 2017). Thus, the assumption under-
pinning condition-specific knowledge is that people with the same diagnosis – regardless of
who they are, the contexts in which they are living, and who is delivering the programme –
can successfully be treated by similar therapies.
Bringing Qualitative Research into Rehabilitation – A Worked Example 225

FIGURE 14.1
Evidence-based practice means to integrate a patient’s and clinicians’ expertise with the best available research
evidence.

Another central discourse within rehabilitation referred to by the health profession-

als who participated in this project was person- or patient-centred practice (Gluyas 2015;
Sacristan 2013). Central to patient-centred practice is the idea that patients are regarded
as autonomous people who have the right to be heard and actively involved in decisions
concerning their life and rehabilitation needs (Gluyas 2015). Further, the patients should be
treated with respect by health professionals and a paternalistic attitude should be avoided
(Gluyas 2015; Sacristan 2013). In this context, health professionals are expected to clarify
a patient’s concerns and beliefs, inform them about treatment options, and empower the
patient to make decisions, set their own attainable goals, and engage in actions to reach
those goals. This approach recommends that clinicians include goal-setting, motivational
techniques, and appropriate ways of communicating in their care provision (Gluyas 2015).
The person-centred practice focuses on the individual patient’s wishes and needs, but is
considered to be an integrated part of EBP (Sackett et al. 2007), as illustrated in Figure 14.1.

A Brief Review of Condition-Oriented Evidence on Fibromyalgia

FM is a common disorder with a prevalence estimated to be about 3% to 5% in the general
population (Queiroz 2013). FM is a persistent widespread musculoskeletal pain condi-
tion accompanied by an array of other symptoms such as fatigue, sleep disturbances,
memory problems, irritable bowel, low activity tolerance, and several complaints
related to the autonomous system (Choy 2015). Psychological changes are also reported:
depression, illness worries, anxiety, inadequate coping skills and psychosocial distress
(Anderberg et al. 2000; Ercolani et al. 1994; Gupta et al. 2007; Kurtze et al. 1999; Turk et al.
1996). Typical consequences related to FM are impaired daily functioning and difficul-
ties fulfilling social obligations and continuing to work (Liedberg and Henriksson 2002;
Sallinen et al. 2010).
226 Enhancing Healthcare and Rehabilitation

The aetiology of FM is unknown, but stress has been suggested as a plausible triggering
factor, as high or longstanding exposure to mental or physical distress has been observed in
the period before the onset of FM (Wallace and Wallace 2014). Stress also seems to aggravate
symptoms (Yunus 1994). The pathogenesis of FM is explained by hypersensitivity within
the central nervous system (Ang and Wilke 1999; McVeigh et al. 2003; Winfield 1999). This
means that pain may result from both an amplification of normally pain-free sensory stim-
uli or the prolongation of normally painful stimuli. An explanation of several other symp-
toms is related to hyporesponsiveness within the hypothalamic-pituitary-adrenal axis
(Crofford et al. 1994; Griep et al. 1993), indicating the existence of inappropriate responses
to stressors (Neeck and Riedel 1994). Thus, it has been suggested that biological responses
to long-term ‘fight and flight’ arousal from stress may exhaust systems (Coopens et al.
2018; Van Houdenhove et al. 2005).
Although FM is explained by biological deviations, these cannot be verified by conven-
tional clinical examinations such as blood tests and radiological assessments. Persons with
FM do not look sick, and therefore FM is invisible both from ‘the inside’ and ‘the outside’.
Health professionals and other people in society may think that patients with FM are
malingerers or hypochondriacs, and the symptoms are considered to be imagined or of a
psychological nature (Mengshoel et al. 2017). Accordingly, the use of a diagnosis is ques-
tioned, and some argue that labelling the suffering with a diagnosis hinders recovery
(Hadler 1996).
Systematic reviews of effect studies have been conducted in order to illuminate the best
treatment approach for patients with FM. Based on these reviews, evidence-based clinical
guidelines for FM have been developed that recommend the use of tricyclic antidepres-
sive drugs, cognitive behavioural therapy, exercise programmes, and patient education
(Brosseau et al. 2008a, 2008b; Carville et al. 2008). However, a meta-analysis showed that
antidepressant drugs had minor clinical improvement in pain reduction (Üòeyler et al.
2008). The authors expressed concerns as to whether the benefits were big enough, con-
sidering the potential side effects from long-term use. Several systematic reviews have
concluded that exercise is an important form of therapy for patients with FM (Bidonde
et al. 2014; Busch et al. 2002; Jones et al. 2006; Macfarlane et al. 2017; Sim and Adams 2002).
Like drugs, strengthening or conditioning exercise programmes lead to some, but not last-
ing, symptom relief. Exercise leads to improved physical functioning, and an umbrella
systematic review noted that physical activity at a moderate intensity level has no adverse
effects (Bidonde et al. 2014). However, it should be noted that exercise must be performed
on a regular basis to maintain its benefits.
Education programmes have been developed to help patients manage FM symptoms
through learning about the condition and practicing appropriate coping skills. The content
of these programmes varies, but in general they include lectures on pain mechanisms,
encouragement to exercise regularly, and education in pain-management techniques
including relaxation and adjusting daily activities to avoid overstrain (Goldenberg 2008;
Mannerkorpi and Henriksson 2007; Mengshoel et al. 1995). Attempts may also be made
to modify negative feelings, based on the assumption that negative thoughts and certain
behaviours can maintain or aggravate suffering (Burchardt 2002). Patient education pro-
grammes overlap to some extent with cognitive behavioural therapy (CBT). CBT is a psy-
chological approach based on a theory that a person’s beliefs, attitudes, and behaviours
play a central role in determining a patient’s experience of suffering. The aim is therefore
to change cognition and behaviour inspired by classical and operant learning theories
(Davidson 2008). Systematic reviews have shown that patient education and CBT lead to
Bringing Qualitative Research into Rehabilitation – A Worked Example 227

clinically relevant improvements in pain, disability, and mood, but the effect sizes are not
large, and the effects often do not last (Bernardy et al. 2013; van Koulil et al. 2007). The
limited effects of recommended therapies imply a need for developing new rehabilitation
programmes.

A Brief Review of Person-Oriented Evidence on Fibromyalgia

Several qualitative studies have been conducted to explore what it is like to live with
FM. Bodily sensations of pain and fatigue are experienced as diffuse, with varying
degrees of severity (Cunningham and Jillings 2006; Hellström et al. 1999; Råheim and
Håland 2006). Many factors can trigger symptoms, but these may vary for no apparent
reason (Sim and Madden 2008). This means that patients find their bodies unreliable
(Råheim and Håland 2006; Söderberg et al. 2002), and they carefully monitor their activi-
ties to avoid ‘overdoing it’ (Cunningham and Jillings 2006; Mannerkorpi et al. 1999).
Accordingly, both the fear of pain and the pain itself may disturb everyday habits and
routines (Richardson et al. 2008). Daily life can be perceived as chaotic and beyond a
person’s own control (Grape et al. 2017), as activities are planned in accordance with
day-to-day symptom levels and are halted if these become worse (McMahon et al. 2012;
Richardson et al. 2008). In this way, everyday life becomes ruled by incomprehensible
bodily sensations (Åsbring and Närvänen 2004; Richardson et al. 2008; Schoofs et al.
2004). This can lead to grief over undone tasks and unfulfilled social obligations, and
patients can be forced to delegate responsibilities to other people, as such, a patient’s
identity, social roles, and relationships are compromised (Richardson 2005). Patients also
experience health professionals and others as questioning the ‘realness’ of their symp-
toms (Briones-Vozmediano et al. 2013; Dennis et al. 2013; Mengshoel and Heggen 2004),
and they sometimes feel that their credibility and dignity are threatened (Åsbring and
Närvänen 2002; Sallinen et al. 2011). Thus, patients with FM have to face both the bur-
dens of living with an inexplicable and disruptive illness and being disrespected by
other people (Juuso et al. 2014).
It is often years before a diagnosis of FM is arrived at (Choy et al. 2010). During this pro-
cess, the patients consult various medical specialists in order to rule out serious illnesses
(Mengshoel et al. 2017). Immediate relief is experienced by patients when getting a FM
diagnosis, as it means they are not suffering from any fatal or crippling disease (Madden
and Sim 2006; Mengshoel and Heggen 2004; Undeland and Malterud 2002). However, the
relief wanes over time when patients discover that the diagnosis neither validates their
sickness nor is accompanied with effective therapy (Madden and Sim 2016). Patients often
try several therapies without success, and when they do not become better, they often
find that health professionals give up on them, perhaps thinking they are not doing their
best to recover (Mengshoel et al. 2017). At this stage, patients are often told that they must
accept the situation and learn to live with it, but the diagnosis provides little explanation of
how to understand and live with FM (McMahon et al. 2012; Undeland and Malterud 2007).
Often, patients are told to ‘listen to their body signals’ in order to learn what they can
and cannot do. However, what is tolerable one day can be impossible the following day
(Richardson et al. 2006). Thus, the body does not necessarily provide any definitive answer
about how to adjust a life to an illness.
228 Enhancing Healthcare and Rehabilitation

In acute pain conditions, pain is often related to injurious bodily incidents. This inter-
pretation could also apply to incidents of pain aggravation in chronic pain conditions.
In contrast, patients who have recovered from FM understand symptom aggravation as
the body’s way of warning them about too much mental and physical strain over time
(Mengshoel and Heggen 2004). This meaning was used by the patients as a guide to figure
out what had to be done to achieve a less stressful life. New episodes of pain, after a patient
had become healthy again, were even reversed by a temporary down-regulation of daily
life (Mengshoel and Heggen 2004). Other researchers who have interviewed patients who
have recovered from FM also find that symptoms are used as a resource for remaking a
daily life they can tolerate (Grape et al. 2015; Sallinen et al. 2012; Wentz et al. 2012). In this
process, symptoms gradually disappear (Grape et al. 2017). This suggests that life stress
can be heightened by uncertainty related to the diagnostic process, the ambiguous mean-
ing of the diagnosis, the lack of efficient therapies, and degrading attitudes from health
professionals and other people. Of course, it is also stressful to live with an unmanageable
illness that disrupts daily life, social identity, and roles. Accordingly, making sense of the
illness situation and adjusting one’s life situation accordingly can be important ingredi-
ents for modulating stress.
Summing up the evidence, low effects of pharmacological and non-pharmacological
therapies for FM have been demonstrated by the condition-oriented evidence, imply-
ing that the development of new rehabilitation programmes for these patients is
needed. Both quantitative and qualitative studies show, in various ways, the complex-
ity of symptoms and their personal and social consequences – life stress, too, may play
a role, for example, in perpetuating symptoms. Few studies address patients’ recov-
ery experiences, but evidence from qualitative studies brings hope that patients can
overcome FM. We therefore wanted to incorporate this knowledge into the process of
developing a new rehabilitation programme. In the following section, we describe our
working process.

The Working Process of Developing a New Rehabilitation Programme

The Context and Participants
The project was undertaken at the Lillehammer Hospital of Rheumatic Diseases in
Norway. This is a specialised hospital delivering medical diagnostics and therapies to
patients with chronic musculoskeletal disorders, as well as multidisciplinary rehabili-
tation programmes for in- and outpatients. Over the years, the staff has been involved
in several research projects, and the hospital has a culture that encourages continuous
debates amongst the staff aimed at improving practice. Their rehabilitation programme
for patients with FM followed the clinical evidence-based guidelines and included a
combination of patient education, CBT, and conditioning exercise. A multidisciplinary
team of 12 health professionals to 14 health professionals participated in the present
project. The team was comprised of nurses, occupational therapists, physicians, phys-
iotherapists, social workers, a psychologist, and a dietician. Most of the team mem-
bers had worked for many years in rehabilitation for patients with musculoskeletal
disorders. Several had further education, e.g., in counselling, and all were recognised
within their professions for their competency. The head of the unit – an occupational
Bringing Qualitative Research into Rehabilitation – A Worked Example 229

therapist – strongly supported the developmental process and attended all of the work-
shops. The clinicians’ reasons for participating were varied from professional curiosity
and a wish to do better, to become stronger to resist external threats of future official
limitations in funding the programme.
The developmental process was led by researchers (the authors) from the University of
Oslo. We had prior clinical experiences in delivering rehabilitation within mental health,
primary healthcare, and rheumatology as physiotherapists, and we had participated in
research projects that lay broadly within the field of rehabilitation, but with a special focus
on FM. The development of the rehabilitation programme was funded by the Norwegian
Foundation for Health and Rehabilitation (no. 2017/HE2-184218) and approved by the
Norwegian Data Inspectorate for Research (no. 2018/57956/3/EPA).

The Researchers’ Pre-understandings

The project leader (AMM) holds a part-time position at the hospital and knew the con-
text and the health professionals, to a certain extent, she occupied an insider position on
the project. Nevertheless, her knowledge about the clinicians’ rehabilitation practice for
patients with FM was fragmented. The other researcher (MS) had an outsider position, she
did not know the participants beforehand, was unfamiliar with ongoing discussions, and,
being Finnish, was unfamiliar with the Norwegian rehabilitation context. The researchers’
diverse positions nurtured the process, helping to develop a good atmosphere for sharing
and discussing experiences and asking about issues that, from an insider position, were
likely taken for granted and thus not detected.
The researchers had the shared experience of clinicians often being up-to-date in quanti-
tative, condition-oriented research, as clinicians learn to read and critically appraise quan-
titative studies through their professional education and courses in EBP. But reading and
evaluating qualitative studies do not seem to be included in such curricula. Clinicians may
feel that qualitative studies report about experiences that are too individual to be transfer-
able to their patients. This raises a timely question about the validity and transferability
of research in a clinical context. Quantitative studies illuminate trends and inform about
‘mean’ patients that do not necessarily exist in the real world (Anjum et al. 2015). This
means that it is challenging to translate evidence from quantitative effect studies to provide
valid information about an intervention’s potential significance to an individual patient in
a clinical setting (Haynes et al. 2002). Qualitative studies, in turn, are highly situational
and nested in the culture and contexts in which the informants live their lives (Green and
Thorogood 2014). Accordingly, informants’ experiences do not necessarily match a specific
patient in another clinical context. Nevertheless, in our opinion, both qualitative and quan-
titative studies can inform and enhance clinical reflexivity and reasoning, but neither can
dictate what clinicians should do in practice. We therefore acknowledge that there is a gap
between research and practice. Because the clinicians claimed to practice patient-centred
care and to take a patient’s perspective into account in their practice, we found it relevant
to bridge this gap by bringing in patient-oriented evidence, discussing it in light of clini-
cians’ own experiences.
We had no given ‘formula’ to implement, but we envisioned that, together with the
clinicians, we could co-develop a programme tailored to patients’ personal recovery
processes. By talking across clinical experiences, scientific, and professional knowledges,
we assumed that everyone’s reflexivity would be encouraged, including our own. It is a
common opinion that knowledge from evidence should be transferred to clinicians in a
kind of ‘one-way road’ (Lockwood et al. 2004; Manns and Darrah 2006) – however, this
230 Enhancing Healthcare and Rehabilitation

contrasted with our goal of establishing a ‘bidirectional road’. In retrospect, we discovered

that the process can even be described as a ‘multidirectional web of roads’.

Workshops and Participants’ Roles

In agreement with the head of the rehabilitation unit, we planned to arrange three full-day
workshops within a one-month interval. The workshops served as an arena for expressing
ideas, sharing experiences, and searching for new understandings in accordance with a
participatory, action research method. After the third workshop, the content of the pro-
gramme had not yet been clarified, so a two-day workshop was arranged to concretise the
content and procedures of the programme.
Before each of the first three workshops, the researchers distributed two or three
qualitative papers, which were then read by the clinicians. The head of the rehabili-
tation unit encouraged the professionals to present these papers and discuss them in
regular literature meetings at the hospital. She also raised questions for the researchers
about what needed to be clarified and further elaborated upon. In addition, between the
workshops, she had informal meetings with the professionals in which they continued
their reflections and eventually agreed to try out new practical solutions in their clinical
practice. The researchers moderated or observed the group discussions, made notes,
analysed and summarised discussions orally and in writing, thereby also linking the
process to evidential and theoretical understandings of patients’ illness and recovery
experiences.

Bringing Qualitative Studies and Inquiry into the Process

Reflecting Across Qualitative Studies and Clinical Experiences
During open plenary discussions, qualitative studies were used to facilitate discus-
sions to explore how the health professionals understood and found meaning in the
literature and whether the studies resonated with what their patients had told them.
For the first meeting, participants read systematic reviews of qualitative interviews of
patients with FM that addressed inexplicable, unpredictable pain and fatigue, diagnos-
tics, activity and identity constraints, and explanations of suffering (Mengshoel et al.
2017; Sim and Madden 2008; Toye et al. 2013). This raised reflections in the meeting
about uncertainties regarding the meaning and managing of such a complex illness.
To further enhance these reflections, two additional texts were selected for reading
before the second workshop: a paper discussing the importance of making sense of
bodily sensations from a patient perspective (Corbin 2003) and a narrative review of
recovery interpreted as a personal learning process (Mengshoel and Grape 2017). The
importance of making sense of an unfamiliar body and its relationship to daily life
were discussed further in the third workshop, inspired by papers addressing two top-
ics: what it is like for patients to live with and be in treatment for FM (Ashe et al. 2017),
and the importance for patients with chronic illnesses to take action to create order
in their life situation (Kralik et al. 2004). Regarding the latter, the authors discussed
professional-driven vs patient-driven approaches, which inspired a lively discussion
amongst participants about the professionals’ roles. The clinicians discovered that
Bringing Qualitative Research into Rehabilitation – A Worked Example 231

what they had read in the papers corresponded and gave meaning to what they had
heard from their patients. Even more importantly, these papers also facilitated reflec-
tions about situations from their own clinical practice and their relationships with their
patients. Whilst the discussions were not always centred on the papers’ main topic,
they all related to concepts or details in the papers that helped the clinicians articu-
late their own thoughts. Hence, the papers were helpful in bringing otherwise private
reflections into the ‘public’ sphere.

Thematically Focused Explorative Reflections

The open cross-talks could often seem fragmented and difficult to follow. Therefore,
we decided to arrange group discussions about the themes that we identified when we
created the summaries from the prior meeting, such as the meaning of the diagnosis
to patients and to professionals. These discussions were initially performed in a large
group, but when we realised that some participants appeared less comfortable voicing
their thoughts in a big group, the group was divided in two. In small groups of six or
seven, everyone had more space and opportunity to express themselves, and the reflec-
tions became more focused and went deeper into the given topic. Here, too, the research-
ers’ role was to facilitate reflections amongst the clinicians, but this time their role also
entailed keeping the reflections focused so in-depth information about a topic could
emerge. As both Bringing Qualitative Studies researchers were engaged in moderating
these discussions, the discussions were audio-recorded.

Importance of Writing up Summaries

After each workshop, the researchers developed written reports summing up what was
said in the open and thematically focused discussions. We discussed our own experi-
ences, notes and audio-recordings, and developed themes that were then presented at
the next workshop. These presentations served to validate our interpretations, to keep
the process on track, and promote further progress. For the final workshop, the research-
ers drafted a document in which the various themes developed in the process were
pulled together and given meaning with the help of theoretical models. This draft was
sent to the clinicians before the workshop and helped both the researchers and the cli-
nicians see how various knowledges were connected and formed a logical whole. After
more clarifying discussions, the draft was used to translate the programme into clinical
procedures and actions. At this point, the clinical team leader took charge of the process
to concretise a timetable for the rehabilitation intervention, including what would be
done and by whom.

Dilemmas Experienced in Clinical Practice

During the developmental process, several dilemmas in clinical practice became apparent
that were not explicitly addressed in the scientific literature. For illustration, we provide
some examples below. These dilemmas could not be solved through procedures, but a
shared awareness about these issues was found to be valuable. It made us realise that
dilemmas can appear when different logics and meanings are set in motion.
232 Enhancing Healthcare and Rehabilitation

A Diagnosis with Various Meanings in Clinical Practice

The papers synthesising qualitative studies about patients’ experiences of FM diag-
nosis (Mengshoel et al. 2017; Sim and Madden 2008) led to lengthy discussions.
One discussion addressed the various attitudes towards the FM diagnosis amongst
Norwegian rheumatologists that either accepted the reality of symptoms or consid-
ered them an exaggeration of trivial complaints. This discussion also linked to an
ongoing debate in Norway about whether hospitals specialising in rheumatology
should deliver services to these patients. To some extent, the clinicians felt they had
to defend their practice against external forces. These controversies are attached to
an ontological question as to whether subjective illness experiences are reliable with-
out any objective verification of biological malfunction. Nevertheless, the team was
ambivalent about whether the diagnosis was good or bad for the patient. On the one
hand, getting a ‘proper’ diagnosis halted the patients’ cycle of seeing new physi-
cians. On the other hand, it was questioned whether the FM diagnosis could attach a
patient to a sick role and thus strengthen sickness behaviour and hamper the recov-
ery process. This ambivalence can be interpreted as rooted in various discourses:
fear of medicalisation, for example, or health professionals’ imperative to help ill
people. The team also expressed different views about the clinical relevance of the
diagnosis. The medical doctors used the diagnosis as a tool for validating FM from a
medical perspective and explaining the patient the biological background of FM and
the medical treatment approach they eventually chose. The allied health profession-
als valued the diagnosis for more instrumental reasons, as it helped them stop the
patients from searching for new interpretations. For them, the diagnosis could also
mean a fundamental change in a patient’s focus from spending energy to convince
health professionals about the reality of their suffering into starting their recovery
work. This reflects the health professionals’ various knowledges and interests within
their work.

Ambiguous Understandings of Acceptance and Normality

The professionals acknowledged that their patients with FM were going through at least
two processes simultaneously: namely, a process of losing or giving up something that
was taken for granted earlier and a process of reaching for recovery. The constant yearn-
ing for life as it used to be, often expressed by the patients, seemed to reflect an ambivalent
attitude towards starting a recovery process. The professionals pointed out that they felt
it is important to explore this ambivalence with the patient in order to enable positive
development and acceptance: for example, asking, ‘What can you do to make your situ-
ation better, and what is holding you back?’ The patient must accept the situation as it
is in that moment, but at the same time not resign themselves to the idea that it will be
the same in the future. Acceptance and normality were closely connected concepts, both
relating to a personal process of recovery. Patients’ grief over the normal life they had
lost and uncertainty about their symptoms could be relieved when patients realised that
their experiences were shared by other patients with FM – i.e., these experiences were
normal for FM. However, in a process of recovery, a new meaningful normality had to be
created. This means that patients had to accept that they would not necessarily return to
life as it used to be, but accept that another normal life could be rebuilt that could be as
good as the previous one. Acknowledging the patients’ processes meant that the health
professionals recognised the personal processes that patients were undergoing, but they
Bringing Qualitative Research into Rehabilitation – A Worked Example 233

considered these processes barriers to their own work rather than something to be directly
acted upon. Acceptance and normality can thus have both positive and negative connota-
tions in a person’s recovery process.

Ambivalences in Interpreting Outcomes

The different meanings of the concept of normality were also discussed in relation to
how and by whom progress in the patient’s process can be measured or evaluated.
It was acknowledged that sometimes the measurement tools that the professionals
considered reliable might not detect small changes that were nonetheless perceived as
meaningful by the patients. Alternatively, there could be times when there was a clini-
cally significant improvement in objective measurements, but the patient did not see the
benefit. It was also stated that encouraging the patient to pay attention to even a small
improvement was important to keep up motivation and to prevent dropouts. The need
for developing follow-up strategies after the rehabilitation programme was perceived
as important because as one of the health professional said: ‘recovery does not happen
in the blink of an eye – rather than that, it takes time and effort’. These reflections dem-
onstrate that two different interpretations of recovery are operating simultaneously:
recovery linked to improved outcomes (i.e., reduction in disease/illness symptoms)
caused by time-limited and effective interventions and recovery linked to patients’ per-
ceptions of wellness and satisfaction as time-consuming processes.

Uncertainties Related to Own Professional Role

The professionals emphasised that the rehabilitation process is in fact the patient’s process
and that the pace of the patient should be respected. However, they found it problematic
if the patient either ‘rushed forward too quickly and crashed’ or ‘parked here and did
not want to move forward’. From the professionals’ vantage point, the clinicians were put
in an uncertain position: to interfere or not to interfere? They also discussed whether it
is ethically acceptable to give up trying to motivate and guide the patient if the patient
was not ready or willing to take action her/himself. It was seen to be against the idea of
person-centred care if the professionals made a decision to halt the rehabilitation, but it
was also their clinical experience that there was no point to continue if the patient was
reluctant. Whether or not to interfere was also discussed with regards to patients who
repeatedly told the same story about suffering. They felt it was important to listen to a
patient’s stories, but at the same time this recurrent narrative hindered the patient from
starting to search for possibilities to do something about their situation. In this case, a
dilemma arose, weighing opposing aims: respect a patient’s autonomy or the professionals’
obligation to be effective.
The syntheses also brought the issue of tolerating professional uncertainty into the
discussion (Mengshoel et al. 2017; Sim and Madden 2008). Uncertainty was reflected
upon regarding how to respond to certain questions from their patients, i.e., what is
wrong, why this pain, and how can I understand and manage unpredictable variations
in symptoms? The professionals felt they lacked good answers to these questions and
were therefore uncertain about their own professional expertise. Although work experi-
ence, further education, and reading research reports had increased their competence
and knowledge over the years, there was still no consensus in the literature that helped
them give an explicit answer to the patients’ questions. Sometimes the clinicians also felt
frustrated with these patients when nothing seemed to help. They pointed out that their
234 Enhancing Healthcare and Rehabilitation

uncertainty was easily transferred onto the patients, and, in such a situation, it could be
difficult to convince the patient about the benefits of the rehabilitation programme or to
motivate the patient to take an active role in their rehabilitation. In turn, patients’ earlier
negative experiences of encounters with health professionals were sometimes reflected
in their relationship to their new providers. The professionals therefore had to actively
work to build a good relationship with patients with FM – more so than with other
patients they met through their work. Their statements suggested that their relation-
ships with patients with FM were fragile, and the professionals ‘watched their steps’
carefully. This reflects the fact that, although health professionals feel they should be
personal, they also has to behave as experts in their practice, these two aims are not
always in harmony.

The Bricolage of Knowledges Underpinning the New Programme

The Programme’s ‘Why’
A biopsychosocial model helped us display the condition-oriented evidence about FM to
help our interpretations by demonstrating how complex FM actually is, as well as how bio-
logical, psychological, and social factors may interact with each other. This made it easier
for us to understand how life stress can perpetuate symptoms and deficits of FM and,
accordingly, why tailoring a rehabilitation programme to modify life stress may be appro-
priate (Figure 14.2). Moreover, the biopsychosocial model makes it plausible that changes
in, for example, how a patient perceives a situation or how their life is lived can influence

FIGURE 14.2
Complexity of FM and rationale for addressing life stress in a rehabilitation program.
Bringing Qualitative Research into Rehabilitation – A Worked Example 235

biological, psychological, and social factors. In this way, the programme’s purpose and
rationale could be explained by condition-oriented evidence.
The biopsychosocial model was already a pillar for the clinicians’ work, and, accordingly,
the modelling of the programme’s ‘why’ was easily adopted. However, it was difficult to
see how the programme’s content could be modelled using a biopsychosocial model. In
support of this notion, Epstein and Borrell-Carrio (2005) conclude that a biopsychosocial
model cannot guide a practice in chosing an explicit or implicit therapeutic methodology,
rather, it serves more as a vision for practice, such as in the present case.

The Programme’s ‘What’

Both the researchers and the clinicians held the opinion that a rehabilitation pro-
gramme for patients with FM could not be delivered in a ‘one-size-fits-all’ fashion,
but had to be tailored to the needs of each patient, in accordance with the ideals of
patient-centredness. For the clinicians, this meant that the patient must determine what
they need and what the right solution is for them to reach their life goals. However,
patient-oriented evidence shows that patients struggle to understand how symptoms
relate to what they are doing in daily life. It is therefore not a given that patients with
FM know what they need. They need hints about what to look for, and they must
explore and discover what brings stress into their lives and find out how to modify, for
example, social obligations, and their own and others’ expectations and priorities. One
premise underpinning this view is that a patient will be willing to take actions if they
find them meaningful and realistic.
The next question to consider for clinical work is: how can health professionals help
a patient develop insights into how symptoms relate to what they do in daily life?
The literature on patient-centredness does not focus on the importance of a patient’s
meaning-making process, but according to person-oriented evidence about FM, this is
important. A personalised resource-oriented recovery model highlights the patient’s
strengths and resources for exploring and discovering how illness relates to their own
life project in order to get their lives back on track (Egnew 2009; Le Boutillier et al.
2011; Priebe et al. 2014). Each patient has to discover what their body can tolerate in
daily life in order to trust their body again; find out what must be prioritised in their
lives; and take actions to adjust their lives to their capabilities. For the patient, this
may involve finding out what kind of life is possible to live within the boundaries set
by an illness, restructuring patterns of living, getting used to new habits and rou-
tines, and redefining social roles and obligations (Kearney 1999). As in patient-centred
practice, this process must be guided by the patient’s priorities, values, abilities, and
competences (Priebe et al. 2014). A person’s recovery process is powered by their hope,
engagement, and strength, and by support and engagement from others. The endpoint
of this recovery process cannot be predetermined, but is part of the patient’s explor-
ative learning process. The path to recovery may take different turns over time, and
a relapse does not necessarily have to be interpreted as a failure, but rather as some-
thing that gives new insights. Thus, a personal recovery process, as illustrated by the
person-oriented evidence from interviews of patients with FM, communicates well
with a resource-oriented recovery model and the clinicians’ efforts to engage in deliv-
ering patient-centred practice.
Underpinning the new rehabilitation programme is an assumption that although well-
ness can be over-shadowed by illness, it is not inevitably lost because of it. A patient there-
fore is believed to have the capacity to reshape their future and bring wellness back to the
236 Enhancing Healthcare and Rehabilitation

fore (Lucey 2017). Learning that FM is a chronic illness that one has to learn to accept and
live with can deprive a patient of hope and motivation to overcome FM. However, know-
ing that someone has recovered can provide hope and empower a patient to take action.
But if a patient should fail at their recovery, our discussions highlight the fact that health
professionals must be aware that the patient should not be blamed.

Final Reflections about What We Learnt

By bringing person-oriented evidence from qualitative studies into the process of
developing the rehabilitation programme, we created an opportunity for health pro-
fessionals to express otherwise personal clinical experiences and discuss them with
others. The reflections were facilitated by discussions across qualitative studies and
clinical experiences, as well as the researchers’ explorative approach in accordance
with qualitative research. We actively used theories about personal suffering and heal-
ing to interpret the group’s reflections, thereby introducing new interpretations to the
group. This ended up becoming a fruitful discovery process for us all. Moreover, the
gap between clinical experiences, evidence, and patient-centredness was bridged with
the help of biopsychosocial and personal resource-oriented models. Thus, we argue
that by taking a ‘bottom-up’ approach, we were able to develop a theory-driven and
patient-centred rehabilitation programme that also includes clinical experiences and
preferences.
The prior rehabilitation programme aimed to promote a healthy lifestyle amongst
patients to improve health. The new programme is more focused, as it targets life stress
modifications which is linked to an understanding of the FM condition. Certainly, healthy
lifestyles can impact life stress, and it may still be relevant to bring in elements from exer-
cise, pain modulating techniques, and diets. But the difference here is that the purpose
of the programme has changed, and this may in turn change the ways strategies are
applied. For example, physical activity can serve as a strategy to modulate stress instead of
previously to improve physical fitness. Instead of choosing strategies from a ‘tool-box’ of
health strategies, the new programme has no tool-box, rather each patient has to find what
is right for them to do to modify their life stress and overcome problems of FM.
In patient-centred practice, it is important to acknowledge the patient’s experiences,
and we argue that it is also important to understand the meaning of what patients say by
taking into account patients’ experiences during the programme. Patient-oriented evi-
dence can enable clinicians to make sense of and respond to patients’ stories. For years,
this has been emphasised by physicians practicing narrative medicine, for example,
Clark and Mishler (1992) and Kleinman (1988). Despite the fact that patient-centredness
is included in the EBP model, qualitative studies have not been suggested for the sake
of understanding experiences. However, we learnt that qualitative studies are impor-
tant for interpreting both patients’ and professionals’ experiences. Thus, we suggest
that qualitative studies should be brought into the field of rehabilitation to support
patient-centred practice.
In summary, with the help of theoretical models and interpretations, qualitative studies,
and qualitative explorative interviews and analysis, the content of a theory-driven,
patient-centred rehabilitation programme was developed. As the health profession-
als were actively engaged in the development process, they created an ownership of the
Bringing Qualitative Research into Rehabilitation – A Worked Example 237

programme. Thereby, the programme was directly implementable to practice. New con-
cepts and ways of talking about a patient’s recovery process are now being used by the
health professionals: for example, they refer to turning points, small and big steps towards
change, patients’ discoveries, and healing work in context of everyday work, biographical,
and identity work. This does not mean that all clinical uncertainties and dilemmas are
answered, but they can be articulated and discussed by the team in light of theoretical
knowledge about FM, illness, and the patients’ personal recovery processes.

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15
Concept Development through Qualitative
Research: The Case of Social Support Networks
for People with Intellectual Disability

Anne E. Roll and Barbara J. Bowers

CONTENTS
Text and Concepts in Qualitative Research ............................................................................. 243
Professional and Policy Implications of Concepts ................................................................. 244
Examples from Qualitative Research on Health and Healthcare......................................... 245
The Case of Social Support Networks for People with ID .................................................... 246
Research Process.......................................................................................................................... 247
Developing Concepts ................................................................................................................. 247
Member Checking ....................................................................................................................... 248
Everyday Use ............................................................................................................................... 248
Potential Contributions of Concepts ........................................................................................ 249
Conclusions .................................................................................................................................. 250
References .................................................................................................................................... 250

Text and Concepts in Qualitative Research

Most qualitative research is based on some form of textual analysis. Researchers use
documents, observation protocols, and interview transcripts to conduct analysis. In this
chapter, we focus on one of the earliest systematic approaches to analysing qualitative
data, the grounded theory approach. Originally developed by Glaser and Strauss (1965),
the approach has since been revised and interpreted differently by several authors
(Glaser 1978; Strauss 1987; Strauss & Corbin 1990; Corbin & Strauss 2008; Bowers &
Schatzmann 2009; Bryant & Charmaz 2011; Charmaz 2014, 2016). However, as one of the
most commonly used qualitative methodologies, some of its key elements have remained
constant. They include the concurrency of data collection and data analysis, early initia-
tion of interview transcript or field note coding, theoretical sampling to support ongo-
ing analysis, and the constant comparison of the emerging concepts with existing and
new data. The aim is to arrive at a theory or conceptual model that is grounded in the
data. It typically includes identifying a central category or core category which refers
to a basic social phenomenon or process and that accounts for most of the observed
behaviour (Strauss & Corbin 1998).
In the grounded theory methodology, coding involves labelling concepts, the dimen-
sions of those concepts (often as social processes), and the conditions associated with
variations in those processes as described by participants. It is in their talking about a
243
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phenomenon that concepts, dimensions, and conditions are discovered. Thus, the concep-
tual model generated at the conclusion of the study is ‘grounded’ in the data rather than
being guided by received theory. Whilst different approaches for coding and analysing
have been suggested (Strauss & Corbin 1990; Glaser 1992; Charmaz 2014, 2016; Bowers &
Schatzman 2009), the general idea of analytically breaking the data into core components
to build a conceptual model and ultimately a theory has remained consistent. Since these
codes are intended to capture what is analytically meaningful in the text, as expressed by
the participants, these are analytical concepts. Eventually, according to Strauss (1987) and
Strauss and Corbin (1990), the most analytically important concept to which most codes
can be related becomes the central concept.
In their well-known study Awareness of Dying (1965), for example, in which Glaser and
Strauss initially described the grounded theory methodology, the central concept was
‘awareness context’. Studying the interaction of staff and relatives with dying people in
a hospital, they argued that what the patient knew about his or her state and what others
assumed the patient knew was crucial for how they interacted with each other. Glaser and
Strauss (1965) identified the following four types of awareness: ‘closed awareness’ (patients
do not suspect their death), ‘suspicion awareness’ (patients have a suspicion regarding
their death), ‘awareness of mutual pretense’ (nothing is said, but everybody knows), and
‘open awareness’ (the patient knows it and speaks openly about it).
This foray into grounded theory methodology shows how concepts are used for analyti-
cal purposes in one particular qualitative research approach. The conceptual innovations
that these studies produce increase scientific knowledge. By doing so, they can also have
an impact on how professionals understand and act in certain situations. In Glaser and
Strauss’ Awareness of Dying (1965), the distinction between the different awareness types
that the authors developed shaped how health professionals thought about and interacted
with people they believed were dying.
This research demonstrates how qualitative research broadens understanding and goes
beyond medical knowledge. By developing concepts based on qualitative data collection, it
can inform people, researcher, and clinicians about processes that are important for health
and healthcare. New concepts and conceptual distinctions that qualitative studies produce
therefore can lead to real-world changes that impact the health and well-being of patients.

Professional and Policy Implications of Concepts

The British sociologist Anthony Giddens argued that one difference between the nat-
ural sciences and the social sciences is in how concepts are used and how they travel
(1986). He argued that in the natural sciences, scientists develop concepts to describe and
understand the natural world, but that this natural world does not use these concepts
(‘single hermeneutic’). However, the social sciences operate with a ‘double hermeneutic’
because ‘the concepts of the social sciences are not produced about an independently con-
stituted subject-matter, which continues regardless of what these concepts are. The “find-
ings” of the social sciences very often enter constitutively into the world they describe’
(Giddens 1986: 20). The concepts that are developed to describe social life become an
important element of social life itself and thereby change it. Concepts that biologists
develop, on the other hand, do not change the material reality these concepts refer to,
Concept Development through Qualitative Research 245

for example, an atom. Concepts that are developed in the social sciences not only often
enter the non-academic world, but by doing so, shape our understanding of this social
reality. There are many examples, including concepts such as social class or habitus. The
same is also true for new concepts developed in research on health and healthcare. When
these concepts move beyond the academic field, they begin to shape how we think about
and act in the world. These effects may be particularly strong in certain professional and
policy fields, but also with broader audiences.
By exploring lifeworlds that we know very little about and by trying to understand
why people act the way they do and the meaning it has for them, qualitative research can
develop new concepts that both reflect and shape our understanding of the world beyond
academic circles. This is one of the strongest potential contributions qualitative research
can make to improving health and well-being, particularly for groups we know relatively
little about, allowing us to gain insights into their health-related practices or interactions
with the health system. One such group, people with intellectual disability (ID) and their
families, will be used to demonstrate how powerful and transformative concept develop-
ment through qualitative research can be.

Examples from Qualitative Research on Health and Healthcare

Apart from the classic example from Glaser and Strauss (1965) presented above, many
other qualitative studies in nursing and health research have developed new concepts
that have subsequently shaped healthcare. We will now briefly introduce some studies on
diverse subjects such as caregiving, chronic illness, and in somewhat greater detail, how
family members of people with ID build social support networks for people with ID. These
studies demonstrate the potential of qualitative research to make important contributions
to healthcare and rehabilitation by developing new concepts based on experiential data
from the perspective of people participating in research studies.
Kathy Charmaz (1983) studied the experience of being chronically ill. With her category
‘loss of self’, she describes how people lead more restricted lives, experience social isola-
tion, are discredited, and how they experience being a burden to others because of their
chronic illness. She describes this as an experience of suffering that goes beyond physical
suffering related to direct effects of the illness. This more complex understanding of how
patients experience their illness, within their social context, gives healthcare providers a
more comprehensive understanding of the patient’s needs than would be possible if only
considering effects directly related to the illness. This revelation has strong implications
for healthcare delivery strategies.
A second example is Barbara Bowers’ (1987) study of intergenerational caregiv-
ing. She found that caregiving usually involves much more than the traditional def-
inition of hands-on caregiving that healthcare provider and researcher alike had
previously focused on. Bowers (1987) described the following five categories of care-
giving: anticipatory, preventive, supervisory, instrumental, and protective caregiving.
‘Anticipatory caregiving’ is caregiving that considers the possible future and prepares
for it. ‘Preventive caregiving’ includes activities that family caregivers carry out to pre-
vent their relatives’ conditions from getting worse. Bowers refers to the active involve-
ment of caregivers in the caregiving process by doing things like arranging doctor’s
246 Enhancing Healthcare and Rehabilitation

appointments, for example, as ‘supervisory caregiving’ and traditional hands-on care-

giving as ‘instrumental caregiving’. The last category, ‘protective caregiving’ involves
care designed to protect the self-image of the person they are caring for, a type of care-
giving that is most actively engaged in when the person they are caring for has mild
cognitive impairment. Caregivers do so, for example, by not confronting the person
with their deficits to protect both the person’s identity and, in the case of adult children,
the parent-child relationship. Giving these different dimensions of caregiving separate
names and therefore distinguishing them enables nurses and other health profession-
als to see how complex caregiving can be and to respond in a way that aligns with the
experience of the caregiver. It also helps healthcare providers to better understand and
assess family caregiving contributions for older people, which in turn makes it possible
to better support them.
A third example is Anne Roll’s and Barbara Bowers’ (2019) study entitled ‘Building and
Connecting: Family Strategies for Developing Social Support Networks for Adults with
Down Syndrome’. This study is introduced in somewhat more detail in the following
section to demonstrate the potential of qualitative research and concept development for
improving healthcare and rehabilitation.

The Case of Social Support Networks for People with ID

Whilst it is well known that social networks and social support networks in particular are
important for a person’s health and well-being, (House, Landis, & Umberson 1988; Valente
2010), little is known about the social support networks of people with ID and – as one of
the largest groups of people with ID – people with Down Syndrome (DS) in particular.
In recent decades, the life expectancy of people with DS has increased dramatically and
has reached an age of approximately 60 years in most developed countries (Bittles 2007).
Nevertheless, people with DS are still often dependent on others throughout the life
course. The dependency is due to the significant limitations in both intellectual func-
tioning and limitation in adaptive behaviour of people with DS. For example, not many
people with DS are able to drive and therefore rely on others for transport, especially if
there are no public transport options available. Finding and maintaining work or mov-
ing into an apartment and living independently are other important challenges. Whilst
it is well known that family members play an important role in supporting their children
with DS throughout their lives (Petner-Arrey, Howell-Moneta & Lysaght 2015; Hillman
et al., 2013), very little is known about what family members actually do to develop and
maintain the social support networks for their sons and daughters with DS. However,
because of the critical role that social support networks play in health and well-being
more generally, this knowledge would enable healthcare providers to better tailor their
support to actual needs and address existing bottlenecks. More broadly, if the gener-
ally extensive work of family members was better understood by health and social care
providers as well as policy makers, the potential for more effective programming would
be enhanced, quality of life for family members and adults with DS would likely be
improved, and all too common institutionalisation could be delayed. Understanding
how family members develop and maintain social support networks of people with DS
was the goal of this study.
Concept Development through Qualitative Research 247

Research Process
During her time as a staff nurse in long-term care settings, the first author of this chapter
noticed that people with ID who were aging in the community were losing support from
their family. This was mostly the case because of their increasing life expectancy and their
family members’ own aging process. These people with ID in the community were then often
admitted to long-term care facilities despite being much younger than most long-term care
residents. The importance of social support networks therefore increased and became vital
for older people with DS for remaining in the community. Because the goal of this study was
to understand the participants’ perspectives of the situation as well as how their perspectives
resulted in specific actions (social processes), this study adopted a grounded theory approach.

Developing Concepts
Based on the researchers’ prior experiences, we assumed that awareness of increasing life
expectancy of people with DS would lead to family members engaging in future planning
for the person with DS. Initially, the research focused on how family members were plan-
ning for the future. In the first interviews, participants were asked how they experienced
the social support network of their relatives with DS, what kind of support was provided
by others, and how they felt about and planned for the future of their relatives with DS.
Consistent with grounded theory, our analysis remained grounded in the descriptions of
the participants. To our surprise, planning for the future was rarely mentioned. Family
members’ accounts primarily focused on the present. Whilst future planning was some-
times mentioned, it was never prominent or central. The following quote from an early
interview with a father in his 1980s and a daughter with DS in her late 40s shows this:
‘You’re asking a serious question, “How are we planning for it?” We’re not. We’re just
going to make it, like I said, as best as we can for her until that day comes.’
Based on our expectations about the importance of planning for the future, we asked
ourselves briefly if this father was not caring. How could he not think and plan for the
future given his situation and age? However, during the interview, he talked about so
many other things he had done and is doing to support his daughter. A more detailed,
grounded theory-based analysis of the interview transcripts with the first few family
members revealed that the family members of people with DS were also thinking about
the future, but were much more focused on the present and about what they have already
done, and continue to do, to support the person with DS. Following this insight, new inter-
view questions were developed to reflect this insight and to ask for what family caregivers
do to support their relatives with DS and to what end. These data were analysed again and
additional data were collected and, over time, through the constant comparison of data
and emerging categories two approaches (social processes) for developing and support-
ing the social support networks of people with DS were identified: the ‘building’ and the
‘connecting’ approaches. Based on this analysis, we eventually developed what we call the
building and connecting framework (Roll & Bowers 2019). This framework encompasses
the two approaches we identified and the associated strategies for helping people with DS
develop and maintain social support networks throughout their lives.
248 Enhancing Healthcare and Rehabilitation

The building approach includes strategies that family members use to build a support
network around the person with DS, mostly relying on family members and friends.
The connecting approach, on the other hand, is characterised by connecting the person
with DS to already existing, external, and often professional, actors and organisations.
Both approaches and the associated strategies are described in more detail in Roll &
Bowers (2019).

Member Checking
This section describes a member checking exercise in which the preliminary concepts are
introduced to some research participants and experts in the field of people with DS – in
this case, family members of people with DS – to get their feedback. Member checking is
a technique used in qualitative research to help improve the accuracy, credibility, valid-
ity, and transferability of findings by sharing preliminary or final results with partici-
pants to find ask them whether the developing framework reflects their experience, to add
dimensions that they don’t see, and to add variations in experience and the conditions
that seem to account for those variations. In the study by Roll & Bowers (2019), the first
member checking exercise was carried out after slightly more than two thirds of all inter-
views (20 out of a total of 29). The data were continuously being analysed and the prelimi-
nary findings could therefore be presented to family members of people with DS to see
if they could see their own experiences being reflected in the developing framework. An
early version of the figure that presents the building and connecting approaches and their
respective strategies was shown and explained to participants. Two general kinds of reac-
tions of participants could be distinguished, although some participants combined both
reactions: using the concepts and their adaptation.

Everyday Use
After the building and connecting approaches and the respective strategies had been pre-
sented, some family members immediately categorised themselves as either using build-
ing or connecting strategies. From that point onwards, almost all participants used the
concepts to refer to these two approaches and the associated strategies and to describe
what they and others were doing, demonstrating how useful the concepts were in allow-
ing them to express their experiences. None had used this language (or concepts) in the
past to think about or describe their situations and had therefore not previously been able
to express these components of their experience. This is illustrated by the way this sister of
a person with DS responded, referring to her and her mother’s behaviour:
‘Clearly the builders, clearly the builder. Just it always worked, that [person with DS]
was always at home. And there was a lot of planning that goes along with making
[person with DS] life enriched in work, in recreation. Mother always thought she could
handle that, and she did. And she did it really well, and she kept him super, super
involved from work, activities, recreation. They did things together. We did things
together. It worked’. [127 sister]
Concept Development through Qualitative Research 249

Another mother also expressed excitement about the usefulness of these concepts, stating
that finally someone gave her the language to explain what she had been doing all these
years for her son with DS. By moving him out at an early stage and sharing responsibilities
and decisions with professionals, she tried to enable him to have the most independent life
possible:
‘Definitely I am a connector. Now I can finally explain to other moms what I am doing
and I feel not guilty about it’. [134 mother]

People who were not family members, but experts in the field of providing care and sup-
port for people with DS also used the approaches, primarily for describing changes in the
lives of people with DS:
‘I think there is this transition [relating to a family situation] you just talked about
with the building approach towards the connecting approach. He was in the building
approach, but his guardians passed away. So now he needs – and she [mother of the
person with DS] wants him to have more support with that outside’. [140 caregivers]

In the next case, a mother justified why one approach alone is not working.
‘I will use a building approach to build skills so that he can better work using a connect-
ing approach and everything. But as a family, like you said, the siblings come in and
everything, and they mess it up and everything because they want to protect them and
keep them in a building approach’. [mother of a person with DS]

Some participants gave positive feedback and asked where this framework and these con-
cepts came from. We explained that they were developed based on the analysis of the
interviews. One mother then exclaimed:
‘And I had not heard ‘building approach’ and ‘connecting approach’ before, so that is
something that I will sell. That was good’. [Mother 123]

Potential Contributions of Concepts

Whilst these concepts have only been developed recently, it is possible to speculate about
their potential future contributions to illustrate how qualitative research can contribute to
healthcare and rehabilitation through concept development.
First, and beginning at the macro level, this framework and the two central concepts
could help policymakers understand that two different approaches exist for family mem-
bers for supporting their relatives with DS. Therefore, variation in the structures and com-
ponents of support programs might be necessary to accommodate both groups and to
support them in ways that are consistent with, and build on, the support provided by
families.
These concepts could also be helpful for professional healthcare agencies and could
prevent family members from being misjudged or labelled in ways that are not helpful.
For example, some family members shared that they were often seen as overprotective
if their adult child with DS still lived with them. Other family members reported being
seen as uncaring if they chose to share responsibilities with professionals and promoted
their adult child’s independence. Using this framework could facilitate a more appropriate
characterisation of the work that families do and could serve as a basis for developing new,
more supportive professional strategies.
250 Enhancing Healthcare and Rehabilitation

And as the member checking exercise has already indicated, these concepts can help
family members of people with DS and people with DS themselves to explicitly talk about
their preferred approaches and strategies. Volunteer groups and self-help organisations
could use these concepts in marketing materials, information sessions, and discussions
with clients and families. The framework might also be useful in guiding families as they
begin to make decisions about how to care for a child with DS, giving them the opportu-
nity to think about and consciously decide which approach might suit their circumstances
and how or when to combine the two approaches.
Like in the cases of the other qualitative studies on nursing and healthcare introduced
above, the concepts developed in this study may travel beyond academia to shape policy,
healthcare practice, and the everyday lives of the people with DS.

Conclusions
One of the ways qualitative research can contribute to healthcare and rehabilitation
is by developing new concepts and making conceptual distinctions. This chapter has
focused on the grounded theory research approach which is one of the best-known
and most frequently used approaches. It can be distinguished from other qualitative
approaches in its insistence on building frameworks, and ultimately theory, grounded
in empirical data and taking the perspectives of research participants seriously. Most
importantly, this requires the researcher to hear what participants are saying, to render
their experiences conceptually, and to avoid imposing preconceived understandings of
these experiences.
Naming something is a precondition for talking about it, reflecting on it, consider-
ing alternatives, and making conscious decisions for or against something. Developing
concepts for what people do – especially when this tends to be invisible to professional
observers – therefore is an important first step. And as soon as these concepts leave the
academic realm, they can begin to shape social reality. Because they can do so both in
positive and in negative ways and the researcher has little to no control over this, it is very
important that the underlying research process is rigorous and credible.
Whilst the actual usefulness and impact of the study on the social support networks of
people with DS and the role of family members introduced here remains to be seen, other
studies have already shown that qualitative researchers can make an important contribu-
tion to improving healthcare and rehabilitation through concept development. And as our
social worlds are getting more diverse and more complex in many regards, more qualitative
concept development is necessary to improve healthcare and rehabilitation in the future.

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16
The Importance of Social Support in the
Rehabilitation of Female Bariatric Surgery Patients:
Lessons Learned from Qualitative Inquiry

Jennifer Paff Ogle, Juyeon Park and Mary Lynn Damhorst

CONTENTS
Introduction .................................................................................................................................254
Setting the Context ......................................................................................................................254
Social Support for Bariatric Surgery Patients .....................................................................254
Qualitative Methods as Means to Uncover the ‘Parts Other Methods Cannot Reach’..... 255
Social Support and the Rehabilitation of Female Bariatric Patients .................................... 256
Themes and Theoretical Insights from Participant Accounts .......................................... 256
The Importance of Support and the Varied Others Who Provided It ............................ 257
Types of Support Provided ........................................................................................................ 257
Assuaging Uncertainty and Anxiety ........................................................................................ 258
Serving as Role Models and Companions ............................................................................... 260
Nurturing a Sense of Mattering ................................................................................................ 261
Assisting with Practical Needs.................................................................................................. 262
Participants’ Desire for More or ‘Better’ Support .................................................................. 263
Lessons Learned from Our Qualitative Inquiry and Implications for Moving Forward .... 264
Lesson #1: Harness the Potential of Qualitative Methods to Do What They
‘Do Best’ in a Healthcare Context – to Identify ‘What Really Matters’ to Patients
and to Unpack Complex Issues and Processes Related to Healthcare ........................... 264
Lesson #2: Recognise the Value of Qualitative Methods in Verifying and
Complementing Existing Theory ......................................................................................... 265
Lesson #3: Acknowledge the Value of Qualitative Findings in Extending
(or Refuting) Existing Ways of Knowing, Remain Open to New Interpretations
That Do Not Strictly Cohere to A Priori Theory ................................................................. 265
Lesson #4: Value Qualitative Approaches for Their Capacity to Reveal Issues of
Hegemony and Power and to ‘Give Voice’ to Those Whose Voices Have Been
Marginalised in Other Contexts ........................................................................................... 266
Lesson #5: Consider the Implications of Qualitative Research Findings for
Evidence-Based Practice ........................................................................................................ 266
References .................................................................................................................................... 268

Selected excerpts from this book chapter were previously published in the following work:
Ogle, J. P., Park, J., Damhorst, M.L. and Bradley, L. A. (2016). Social Support for Women Who have Undergone
Bariatric Surgery. Qualitative Health Research, 26(2), pp. 176–193. Copyright © 2015 by the Authors. Reprinted
by permission of Sage Publications, Inc.

253
254 Enhancing Healthcare and Rehabilitation

Introduction
Bariatric surgery represents a major medical procedure that requires a significant reha-
bilitation process, including considerable post-surgery lifestyle modifications. This
rehabilitation process includes adhering to a strict dietary regimen (van Hout et al. 2006)
and learning to manage new interpersonal situations (Sogg and Gorman 2008) whilst
adjusting to dramatic weight loss. The experience of bariatric surgery also is often charac-
terised by stress and anxiety (Shiri et al. 2007). As bariatric patients navigate the surgery
and rehabilitation process, they may experience stresses such as physiological problems,
psychological challenges (e.g., fear of dying, depression), difficulties maintaining post-
surgery diet and physical activity routines, interpersonal challenges (e.g., social isolation,
divorce, shifts in social circles, jealousy over weight loss), and body image concerns (Ogden
et al. 2006; van Hout et al. 2006).
In this chapter, we examine the value of qualitative inquiry in lending understanding
about the role of social support in helping women to negotiate the stresses encountered along
the bariatric surgery journey, including the rehabilitation process. To this end, we explore
stories shared and lessons learned from our own in-depth interviews with 13 women who
had undergone bariatric surgery (Ogle et al. 2016). To set a context for this discussion, we
first consider the concept of social support and the ways in which qualitative research can
be employed to ‘[reach] the parts other methods cannot reach’ (Pope and Mays 1995, p. 42).

Setting the Context

Social Support for Bariatric Surgery Patients
Social support refers to the activities and behaviours that people undertake to help others
facing demanding circumstances to reach personal goals and/or to navigate stressful situa-
tions (Tolsdorf 1976). Social support fosters self-acceptance and self-esteem and fulfils needs
for warmth, intimacy, and interpersonal communication (Albrecht and Adelman 1987). Four
forms of social support are commonly discussed within the literature: emotional/affective,
informational, instrumental, and companionship (Bambina 2007). Emotional/affective sup-
port includes demonstrations of care, concern, love, reassurance, sympathy, and empathy.
Informational support entails disseminating facts or direction/counsel that may assist some-
one to address a circumstance or problem by enriching his/her understanding of the circum-
stance or problem and/or by suggesting resolutions to the problem (Bambina 2007; Thoits
2011). Instrumental support comprises offering behavioural or material aid with everyday tasks
or problems, thus providing individuals more time and resources to release themselves from
everyday responsibilities when they are facing a distressing situation in their lives (Bambina
2007; Thoits 2011). Lastly, companionship support involves participating in or sharing of daily
activities and thoughts with others.
Thoits (2011) has suggested that, in health contexts, social support is offered to distressed
individuals by two categories of persons: primary group members and secondary group
members. Primary group members are significant others who lack first-hand experience
with the stressor that is provoking anxiety in a distraught individual. Secondary group
members are individuals in a distressed person’s social network who share first-hand
experience with the stressor at hand. According to Thoits, different group members are
The Importance of Social Support in the Rehabilitation 255

poised to provide differing forms of support to distressed individuals. Primary group

members are best positioned to offer demonstrations of care and to provide practical aid,
whereas secondary group members are best suited to offer empathic understanding, to
provide information/guidance, and to serve as role models. Support persons who concur-
rently occupy primary and secondary roles – that is, significant others who are similar
experientially to the distressed individual relative to the given stressor – are particularly
well-positioned to offer effective support to a distressed individual.
Findings from existing work suggest that social support can promote positive surgery
experiences and outcomes amongst individuals who undergo bariatric surgery. For exam-
ple, Vishne et al. (2004) identified a correlation between perceptions of social support and
satisfaction with bariatric surgery outcomes (Vishne et al. 2004). Several other studies
provide support for a positive correlation between support group participation and post-
operative weight loss (Elakkary et al. 2006; Orth et al. 2008; Song et al. 2008). Further, in
response to open-ended questionnaire items, bariatric patients have emphasised the value
of support group involvement in assisting them to cope with the difficulty of adjusting
to a new dietary routine post-surgery (Hafner et al. 1991). Prior to our qualitative inquiry
(Ogle et al. 2016), however, understanding about how social support operates in the lives of
bariatric patients to promote well-being and positive rehabilitation outcomes was limited.

Qualitative Methods as Means to Uncover the

‘Parts Other Methods Cannot Reach’
Qualitative research is grounded in interpretive philosophical traditions that insist on the
importance of understanding the perspectives of the people involved and the meanings
that individuals ascribe to lived experiences and to human or social problems (Creswell
2013; Pope et al. 2002; Pope and Mays 2006). Generally speaking, qualitative research seeks
understanding rather than quantification1 of social phenomena, adopting analytical catego-
ries to characterise such phenomena (Pope et al. 2006). Because qualitative research brings
to the fore the viewpoints of people with healthcare concerns, it is especially valuable for
gaining understanding about support-related care and interactions, including what sup-
port and interactions mean to patients, what patients gain from them, and what patients
find frustrating about them (Grypdonck 2005).
In-depth interviews – the data collection approach we adopted in our study of female
bariatric patients (Ogle et al. 2016) – can be particularly useful in exploring experiences of
care and support because they allow researchers to gain richness of understanding about
issues and experiences. Because in-depth interviews emphasise people’s ‘own words’
rather than researcher-generated categories and terms, interviews ‘give voice’ to people
under study and can reveal issues unanticipated by the researchers (Pope et al. 2002; Sofaer
1999, p. 1105). In-depth interviews also are especially apt for highlighting the perspectives
of those whose voices are rarely heard (Sofaer 1999), including marginalised populations
such as individuals who are overweight or obese and who seek bariatric surgery.

1 Because sampling strategies used with qualitative approaches do not seek to identify a statistically repre-
sentative group of participants, even expressing findings in terms of relative frequencies may be misleading.
In some instances, however, simple counts may be reported (Pope, Ziebland, and Mays 2006).
256 Enhancing Healthcare and Rehabilitation

Although qualitative methods often are associated with the development of new theory
or models, they also can be particularly valuable in the refinement of existing theory in
that they may move inquiry beyond description towards meaningful explanation that
is not wedded to a priori understanding (Anderson-Hudson and Ozanne 1988; Creswell
2013; Pope et al. 2002; Sofaer 1999). With our qualitative approach, we were able to expand
existing theoretical understanding of social support for bariatric patients by generating
detailed descriptions of the interactions amongst patients and supporters as reported
by patients. The ‘stories and details of people’s lives’ are an avenue to understanding
(Seidman 2006, p. 1).

Social Support and the Rehabilitation of Female Bariatric Patients

Themes and Theoretical Insights from Participant Accounts
We recruited our 13 participants from a bariatric surgery support group. The support
group was sponsored by a university hospital system located in a mid-sized city in the
western United States. Each support group session was facilitated by a certified bariatric
nurse. We limited participation in the study to women who had undergone surgery within
the past 36 months. This ensured that participants’ recollections of the surgery experience
would be readily accessible. We opted to focus upon women’s experiences of bariatric sur-
gery because more than 80% of those who seek bariatric surgery procedures are female
(Farinholt et al. 2013).
Participants in the study ranged in age from 26 years to 66 years, but most were middle-
aged (mean = 53 years). One participant identified as ‘Hispanic’, the remaining partici-
pants described themselves as ‘white’ or ‘Caucasian’. Nine participants were married, the
others were not romantically involved at the time of the research. Three participants noted
that their close family members had undergone bariatric surgery before their own proce-
dures; many others were acquainted with people who had undergone bariatric surgery
prior to their own procedures.
We adopted an in-depth, semi-structured approach for the interviewing process
(Merriam and Tisdell 2015), with each interview lasting between 1 hour and 3 hours. We
drew from the grounded theory tradition, shifting back and forth between data collection
and analysis in a non-linear, iterative process of constant comparison (Corbin and Strauss
2008; Creswell 2013). Emergent design is a common feature of this iterative process, mak-
ing the conduct of interviews a fluid process. Although research and interview questions
were carefully pre-planned and strongly grounded in previous literature, interaction with
the first few participants alerted the researchers to new issues and ideas that were then
incorporated in the remaining interviews. Thus, analysis began early in the data collection
process and expanded throughout the remainder of the study.
In addition, analytic categories and themes were allowed to emerge from the data rather
than being determined only through a priori theory and research findings. Thus, analyses
were used to confirm or support previous research and theory as well as to move under-
standing forward with new understandings (Merriam and Tisdell 2015). To this end, the
interviews and analyses were undertaken in an inductive, reflexive process in which we
continually worked to avoid clinging blindly to previous work whilst also building on
an array of previous work to deepen understanding and to formulate a comprehensible
accounting of the data (Hibbert et al. 2014; Merriam and Tisdell 2015).
The Importance of Social Support in the Rehabilitation 257

We organised the following discussion around key themes/findings that emerged

from our analyses. Throughout the discussion, we use pseudonyms to refer to partici-
pants and incorporate references to prior work that illuminate or support our interpreta-
tions of the data.

The Importance of Support and the Varied Others Who Provided It

Analyses revealed that participants’ experiences of bariatric surgery were marked by both
triumphs and trials. In confronting the challenges encountered throughout the bariatric
journey, participants regarded social support as essential:
‘[Social support] is important; I mean you’ve got to have that support. I couldn’t imagine
going through this by myself. And there’s times…that you want to beat your head up
against the wall, you want to fall down and stop and cry. And I’ve done all that stuff.
Um, but I’ve always had someone there to help pick me back up’ (Marilyn). (Ogle et al.
2016, p. 179)

Analyses also elucidated the kinds of interactions that participants experienced as

supportive as well as ‘the who’ of those interactions (Ogle et al. 2016, p. 179). All participants
noted that they gained support from an assemblage of people in their lives. Although,
in some cases, there was overlap in the forms of support offered by various supporters,
most frequently, the forms of support provided to participants differed across supporters’
social locations. This finding confirmed Thoits’s (2011) proposition that different groups
of supporters specialise in providing various forms of support to distraught individu-
als. Consistent with Thoits’s conceptualisation, participants received support from ‘close
others’ (i.e., primary group members such as spouses, family members, and friends) as
well as ‘like others’ (i.e., secondary group members such as other bariatric patients). Social
support provided by close others reflected the ‘emotional intimacy and physical prox-
imity’ that these individuals shared with participants (Ogle et al. 2016, p. 184), whereas
support provided by like others often was provided within the context of the support
group and revealed empathic understanding of participants’ lived experiences of the bar-
iatric journey. Additionally, our work expands Thoits’ conceptualisation by recognising
a third group of supporters – health professionals – who cannot readily be categorised
as ‘primary’ or ‘secondary’ group members. Absent ‘the emotional and proximal bonds’
of primary group members and the first-hand experiences of secondary group members
(Ogle et al. 2016, p. 179; Thoits 2011), the social support provided to participants by health
professionals was informed primarily by their professional experiences, including the
competence and sensitivities they had developed over the years.

Types of Support Provided

A chief contribution of our findings is data that allow deeper understanding of how sup-
porters provided support, as seen through the eyes of participants. Supporters were
described as:

1. Assuaging participants’ uncertainty and anxiety,

2. Serving as role models and companions for participants,
258 Enhancing Healthcare and Rehabilitation

3. Nurturing participants’ sense of mattering, and

4. Relieving participants of everyday responsibilities during a stressful stage in
their lives.

Assuaging Uncertainty and Anxiety

Throughout their narratives, participants expressed uncertainty and anxiety they had
experienced during the bariatric journey. Prior work has established that social support
may temper uncertainty about health conditions (Albrecht and Adelman 1987; Thoits
1983), and this was clearly borne out within our sample. Participants articulated how var-
ied others in their lives – including health professionals, like others, and close others –
offered emotional/affective and informational support that appeased their uncertainty
and anxiety about the surgery.
Several participants shared that health professionals offered support that helped them
to navigate doubt and hesitation about the decision to undergo bariatric surgery. Health
professionals did not indiscriminately endorse bariatric surgery over other means of
weight loss, but empowered participants to make decisions about the surgery by providing
them information about the health and quality of life benefits of bariatric surgery. Health
professionals also offered guidance to participants about which bariatric procedure
might be most well-suited for them. Additionally, surgeons granted tentative partici-
pants ‘permission’ to move forward with bariatric surgery as an alternative over more
conventional weight loss/management strategies, which had previously been sources of
frustration for participants:

‘I was a little uncertain... My newest doctor, he’s like, “You know the definition of insan-
ity, right? Doing the same thing over and over again and expecting a different result”.
I’m like, “I’ve tried Jenny Craig, Weight Watchers... all sorts of different things”. And,
he’s like, “You need, you need to look at this [surgery], and you need to accept it for what
it is, and if you want to live you know past 45, then this is what you’re going to need to
do”’ (Marilyn). (Ogle et al. 2016, p. 180)

Exchanges with like others within the context of the support group also worked to alle-
viate participants’ insecurities and concerns as they made various deliberations about
the surgery. Like others dispensed advice to participants about different surgeons and
medical facilities, advantages and disadvantages of various bariatric procedures, and
insurance/Medicare coverage of bariatric surgery. This guidance was valued because
it represented first-hand perspectives from individuals who had recently navigated the
bariatric journey and gave participants increased confidence in their decision-making
processes.
Even after committing to the surgery, participants harboured varied concerns and anx-
ieties about the surgery, itself, and the lifestyle changes that would necessarily follow.
As the surgery approached, participants sought and received social support from like
others, close others, and health professionals that served to soothe this distress. Both like
others and close others offered expressions of care and reassurance, frequently provid-
ing prayers and/or a charitable listening ear. Whereas like others were well-positioned
to offer empathic understanding that resonated with participants facing concerns, the
The Importance of Social Support in the Rehabilitation 259

support offered by close others was especially valued because of the strong (relational)
ties they shared with participants:

‘I started going to support group eight months before the surgery and those women
and men are absolutely incredible. I got three emails the night before I went into sur-
gery… Two days before [the surgery], I ran into one of the girls at [the grocery store],
and she asked if she could pray with me and gave me a little pep talk….They have been
incredible, so that took my nerves totally down to a manageable level, I felt like I was
going in [to the surgery] with an armful of people who had already been there’ (Aurora).
(Ogle et al. 2016, p. 182)

‘[My husband] and I, we’re just really close, so just every day, we talked about [the
surgery]…We’d be like, “Now what are we going to do when I have this surgery?”…I
was hooked on Diet Pepsi. [After the surgery], there’s absolutely no carbonated drinks,
ever…I’d sit there and say, “I don’t think I can do it”. And, he’d be like, “Yeah, but is
it worth not having a Diet Pepsi?”...So, it did take me several months working with
[my husband], mostly’ (Betty). (Ogle et al. 2016, p. 185)

Health professionals allayed participants’ pre-surgery apprehensions by listening closely

to participants, recognising the legitimacy of their concerns, and providing reassurances
and explanations:

‘They calmed [my concerns]…The anaesthesiologist listened, and I told him how…I’ve
had problems with the anaesthesia before, and they listened, and they wrote it down,
and they took good care of me, and they really did a great job…They didn’t put me
under as far… I think talking to them ahead of time and letting them tell me that they
were going to pay attention and stuff was good’ (Connie). (Ogle et al. 2016, p. 181)

Finally, health professionals and like others provided informational support that helped to
quell participants’ uncertainty about physiological and psychological issues encountered
post-surgery. In this vein, health professionals shared scientifically grounded knowledge
with participants during support group meetings and follow-up medical appointments.
Participants regarded knowledge claims dispensed by health professionals to be highly
trustworthy and reliable, perceiving health professionals to be ‘expert’ and ‘authorita-
tive’. Much of the guidance provided by health professionals addressed how to manage
the physiological problems encountered post-surgery (e.g., dumping syndrome2) and/or
how to successfully enact the post-surgery lifestyle regimen. Additionally, psychologists
helped participants anticipate potential personal and interpersonal challenges they might
encounter post-surgery (e.g., addiction transference, social isolation, interpersonal difficul-
ties), raising their awareness, and, hence, their preparedness for confronting these trials.
A wide range of knowledge also was exchanged amongst participants and like others
within the support group, including what to eat at various phases of the rehabilitation pro-
cess, how to navigate eating at restaurants, where to purchase reasonably priced clothing
as one’s body quickly changed sizes, how to surmount weight plateaus, which resources
to use/consult, and how the surgery impacted others in one’s life. Beyond assisting par-
ticipants to manage some of the ‘concrete’ challenges of bariatric surgery, listening to like

2 Dumping syndrome is frequently experienced by individuals after gastric bypass surgery and refers to the
quick ‘dumping’ of food from the stomach pouch into the small intestine. Symptoms include abdominal
cramping, fast heartbeat, lightheadedness, and diarrhea. Dumping syndrome can be prevented by avoiding
the consumption of certain foods (WebMD, 2017).
260 Enhancing Healthcare and Rehabilitation

others share their lived experiences with bariatric surgery helped to normalise the tri-
umphs and trials of the surgery experience for participants:
‘I love the support group... it’s been awesome just to hear everyone’s stories and talk
about what their struggles are and be like, “Hey I’m like that too!” Afterward we get
together and talk about it like, “How did you get through it?” “What did you do to make
that stop happening?”’ (Barb). (Ogle et al. 2016, p. 183)

In turn, appreciating that their lived experiences were shared by other, similarly situated
individuals provided comfort and consolation to participants as they sought to cope with
sometimes unfamiliar terrain of the bariatric journey.

Serving as Role Models and Companions

For participants, one of the most important functions that like others played was that of
‘role models’. Observing and modelling others who have effectively negotiated a stressful
situation has the capacity to positively shape the coping efforts of distressed individuals, to
increase their sense of control, to foster hope within them, and to help them imagine them-
selves as similarly successful in the future (i.e., to assist them in striving towards a goal)
(Markus and Nurius 1986; Thoits 2011). In this respect, participants frequently turned to like
others as ‘aspirational models’ of bariatric ‘success stories’, invoking these stories and the
experiences of like others as motivation to help move them along towards similar forms of
success for themselves. For participants, ‘success’ was characterised in terms of evidencing
weight loss or weight loss maintenance that had not been possible prior to surgery and/or
witnessing post-surgery improvements in health, mobility, and/or appearance:

‘My [close relatives, who also underwent bariatric surgery] are doing absolutely
amazing, as far as what they’re supposed to do. The younger one, who had diabetes,
she went to her doctor a few weeks ago, and her A1C was normal, her blood pres-
sure was normal, and she hadn’t been on her meds since she had the surgery... And,
they’ve both lost weight. They’re just doing so well. That is an incentive for me to
continue. I’m not losing weight as fast as they are...They’re really working hard at it.
Well, I am, too... they are sort of an inspiration to me because they’re doing so well’
(Rachel). (Ogle et al. 2016, p. 183)

Of particular interest is that Rachel turned to her family members as a source of inspiration
in her bariatric journey, confirming Thoits’s (2011) argument that significant others who
also are positioned as like others may be especially effective in providing social support.
Participants also looked to some like others as negative role models, or ‘cautionary tales’
of what represents a bariatric ‘misstep’ or ‘defeat’ and what outcomes that they wished to
sidestep for themselves. In this way, findings expand Thoits’s (2011) framework of social
support by proposing that role models are not just aspirational, but may be admonitory,
as well. Thus, within our sample, participants observed how other bariatric patients had
encountered various challenges – most frequently, with gaining back weight lost through
surgery – and invoked the experiences of these like others to consider how they might
avoid a similar fate for themselves:

‘[Bariatric surgery] is not the end all or be all of weight loss or weight gain. It’s something
that you use to achieve what you want to achieve. Like I said, [my relative’s cousin] had
The Importance of Social Support in the Rehabilitation 261

the surgery, but she’s gained almost all of her weight back because she didn’t continue
to use it for what it was meant to be. You have to always be aware of what you’re eating,
because otherwise, you will gain your weight back’ (Rachel). (Ogle et al. 2016, p. 183)

Researchers have proposed that significant others may take on a companionate presence
in the everyday lives of distressed individuals, providing emotional sustenance and com-
panionship support to them (Bambina 2007; Thoits 2011). This was observed within our
sample, with close others serving as ‘joint collaborators’ in the participants’ bariatric jour-
neys and rehabilitation processes (Ogle et al. 2016, p. 186). In the role of ‘joint collaborator’,
close others teamed with participants in differing surgery routines to encourage, moti-
vate, or otherwise provide support to them. For example, close others joined participants
in their post-surgery diet and physical activity regimens, helped participants to navigate
purchases of food and clothing, joined participants at support group meetings, and, in a
few cases, even underwent surgery with participants. Owing to their intimate engage-
ment in participants’ bariatric experiences, close others shared in participants’ ‘journeys
of progress’ (see Ogle et al. 2016, p. 186):

‘My husband would take me for walks in the park... and we increased tree by tree
by tree... I had a hard time getting into walking with this…[but], he’s really encour-
aged me... I weighed 238 pounds, I could hardly walk from one tree to the next, and
we just kept increasing. About six months in, he said, and this is when I started
enjoying it, he says, “I bet you can’t run up that hill.” And, I thought, well, I ran up
the hill, and that just had such an empowering, I could run! And, I started that day,
I would run from tree to tree, and walk farther, and walk and run and walk. But, he
really did encourage me. That is something I will never forget’ (Wanda). (Ogle et al.
2016, p. 186)

Participants were keenly appreciative of the role that close others assumed in inspir-
ing them in their march of progress towards improved health and fitness and expanded
empowerment, frequently reading close others’ companionship and collaboration as testi-
mony of their care and concern. Additionally, during her interview, Wanda suggested that
her husband’s involvement in her post-surgery routine expanded her sense of accountabil-
ity to the routine, noting that his engagement and presence made her sense that she was
part of something ‘bigger than’ herself (cf. Bambina 2007, p. 11).

Nurturing a Sense of Mattering

A sense of mattering, or the inclination to regard the self as important, arises from inter-
personal interactions and has been associated with psychosocial well-being (Schieman and
Taylor 2001). Accordingly, Thoits (2011) recognises lived interactions that foster percep-
tions of mattering as a mechanism of social support that promotes well-being and health.
Throughout their narratives, participants expressed how interactions with health profes-
sionals, like others, and close others nurtured a sense of mattering within them, which in
turn, served as a source of affective/emotional social support at various junctures in their
bariatric journeys.
In a pre-surgery context, interactions with health professionals sometimes addressed a
sense of lack within participants and reassured them that they ‘mattered enough’ to choose
262 Enhancing Healthcare and Rehabilitation

bariatric surgery. For instance, Wanda’s husband was reluctant to support his wife’s deci-
sion to have the surgery, owing to the cost of the procedure. The bariatric navigator at the
surgery centre encouraged Wanda to continue negotiations with her husband, reminding
her, ‘Where there’s a will, there’s a way, and you are worth it’. Reflecting on this encourage-
ment, Wanda remarked, ‘And, that just really…I thought, “I am worth it”’, reflecting in her
the perception that she did matter (Ogle et al. 2016, p. 180).
As they contemplated the surgery decision, participants also received support from close
others suggesting that they mattered enough to their loved ones that these significant others
would embrace them, regardless of whether or not they committed to the surgery procedure:
‘My husband was extremely supportive. He was supportive if I decided not to, and he
said, “I’ll be your biggest supporter if you decide to do it”. …That was everything…I felt
complete acceptance from him, whether or not I did the surgery…I felt like whatever
choice I made, I was acceptable’ (Frances). (Ogle et al. 2016, p. 184)

Frances’s remark that she felt ‘complete acceptance’ from her husband ‘whether or not’ she
chose to pursue the surgery reflects the protective function that a sense of mattering can
serve in potentially stressful situations (Cobb 1976; Thoits 2011). Other participants, too,
recalled interactions with close others that conveyed to them that they mattered, reminding
these participants that their significant others were invested in them and their successes
(cf. Rosenberg and McCullough 1981). For example, when her grandmother encouraged
her to pursue bariatric surgery, this reinforced for Marilyn her worth as a person who
deserved to engage in a behaviour that would enhance the quality of her life. And, after
surgery, when close others asked how participants were ‘getting along’ or whether they
could ‘lend [them] a hand’, this, too, underscored for participants that others were inter-
ested in their welfare and progress (Ogle et al. 2016, p. 184).
Exchanges with like others, particularly within the context of the support group, com-
municated to participants that they mattered enough to be celebrated for their accomplish-
ments and successes (e.g., weight loss or maintenance):
‘And in my experience, it’s not common for women to celebrate each other’s successes –
it’s almost like it’s a bigger deal to discuss a person’s failures or their downfall, and [the
support group] is a whole group of people, and that’s their whole basis of existing... is to
celebrate each other’s successes’ (Aurora). (Ogle et al. 2016, p. 182)

Several participants shared that, prior to surgery, they had accrued relatively limited
experience with being celebrated. Rather, they had frequently been targets of weight-
based discrimination. As such, being applauded for their successes – especially for
successes that ‘rested on the surface of their bodies’ – was especially significant for them
(Ogle et al. 2016, p. 182).

Assisting with Practical Needs

Within our sample, participants frequently received instrumental support from close oth-
ers. This is perhaps not surprising, as the provision of such aid is an expectation of those
with whom we share strong relational ties (cf. Messeri et al. 1993). Instrumental support
was most frequently offered to participants by spouses and family members, but when
they could not assist, friends filled in as their proxies.
The Importance of Social Support in the Rehabilitation 263

Participants identified two forms of instrumental support that helped them to navigate
the bariatric rehabilitation process. First, close others provided help with executing the
tasks of daily life during and after the surgery (e.g., food shopping and preparation, trans-
portation to and from medical appointments, pet care), relieving the participants from
everyday responsibilities throughout this stressful period in their lives (cf. Bambina 2007;
Thoits 2011). Second, close others promoted positive surgery outcomes for participants by
issuing gentle reminders to participants to observe their post-surgery dietary regimens.
Because these reminders signified ‘behavioural assistance with practical accountabilities’,
they constituted a form of instrumental support (Ogle et al. 2016, p. 186):

‘I have to walk around with snacks…[Friends] have asked me, “Did you remember to,
do you need to have your snack?”, you know, just to remind me…You know, people have
said, “Okay, you need to take a break and eat a string cheese”.... So, they’ve been flex-
ible…[and] understanding’ (Helen). (Ogle et al. 2016, p. 186)

Participants’ Desire for More or ‘Better’ Support

All participants in the sample shared that they received social support from a constellation
of others in their lives, noting that this support promoted positive functioning for them. At
the same time, however, several participants acknowledged a desire for more or perhaps
‘better’ support at different junctures in their bariatric journeys, reminding us that, at
times, relationships constitute sources of strain or stress rather than support (Rook 1990).
For example, some participants experienced opposition from others about the decision
to undergo bariatric surgery. Securing support from individuals staging resistance often
required negotiations, with the participants steering these interactions:

‘[My adult daughters]... weren’t all on board until I kind of had a meltdown and said,
“I’m not asking permission, I’m asking you to support me…This is something I have to
do”, and then, it turned them around... [They] started being real supportive of it’ (Betty).
(Ogle et al. 2016, p. 186)

Other participants experienced feelings of ambivalence and concern when they recog-
nised that their family members’ support for their decision to undergo bariatric surgery
was premised upon their family members’ desires for them to render their bodies more
‘socially acceptable’ through dramatic weight loss made possible through the surgery.
At times, participants met with opposition from close others at later points in their bar-
iatric journeys. For example, Connie’s foster children posed resistance to modifying their
diets to accommodate her post-surgery regimen, which confirms prior findings that after
bariatric surgery, family members sometimes struggle to adapt to lifestyle changes neces-
sitated by the surgery (Bylund et al. 2013).
However, most frequently, participants desiring more or ‘better’ support voiced concerns
about being misunderstood and/or being targets of misperceptions about the lived reality
of bariatric surgery. For example, many participants noted that others in their lives falsely
perceived that, after surgery, participants would not enjoy eating or could not go out to
eat. Participants also shared that people frequently assumed that they had taken the ‘easy
way out’ to losing weight – an assumption that participants found to be very hurtful. They
also found that others did not understand their post-surgery dietary regimen, frequently
264 Enhancing Healthcare and Rehabilitation

proposing that participants consume foods or beverages that were not within the confines
of their eating plans or harassing them for eating too little or too much. To cope with these
misperceptions, participants often sought to redress confusion through edification:
‘[I have] a friend... who expressed some concerns... many of them irrational... “Oh my
God, you’re never going to be able to eat again!” “You’re never going to be able to enjoy
food again!”... I tried to explain where she had misconceptions... but... it hasn’t sunk in...
[I: “So, what did you do when she expressed those concerns?”] Well, I tried to educate
her, but she’s not, she doesn’t always... listen carefully’ (Helen). (Ogle et al. 2016, p. 187)

Finally, a handful of participants shared a desire for more enthusiastic or keen responses
from their family members in recognition of their post-surgery triumphs (e.g., weight
losses). Connie attempted to rationalise her daughter’s lack of zeal or interest for her bar-
iatric successes by positioning this reaction within the context of her daughter’s personal
circumstances:
‘My one daughter has been a little more standoffish; she doesn’t offer compliments
unless I seek them out... it would be nice if she was a little more excited, you know.
But again, I think that’s more about what she’s kind of going through in her personal
self; she doesn’t want her mom to be smaller than her, and... I totally get that’ (Connie).
(Ogle et al. 2016, p. 187)

Lessons Learned from Our Qualitative Inquiry

and Implications for Moving Forward
Our qualitative inquiry illuminated the perspectives of largely middle-aged women who
had undergone bariatric surgery within the past 36 months, with an emphasis upon the
role of social support in helping them to cope with the stresses of the surgery experience
and the ensuing rehabilitation process. In reflecting upon our findings – and the interpre-
tive processes used to generate them – we evidenced several worthwhile ‘lessons learned’
about the value of adopting a qualitative approach to gain insights into people’s healthcare
concerns and to develop recommendations for patient care. It is these lessons to which we
now turn our attention.

Lesson #1: Harness the Potential of Qualitative Methods to Do What They

‘Do Best’ in a Healthcare Context – to Identify ‘What Really Matters’ to
Patients and to Unpack Complex Issues and Processes Related to Healthcare
Although prior work had produced limited understanding of how social support operates
in the lives of bariatric patients to promote positive psychological and health outcomes,
our findings richly characterised the forms of social support at work in participants’ lives
and highlighted the roles that this support played in buffering the demands of undergo-
ing and rehabilitating from bariatric surgery. In particular, through inductive analysis of
participants’ narratives, we discovered that supporters: (a) assuaged participants’ uncer-
tainty and anxiety by providing information and understanding/expressions of care,
(b) served as role models and companions for participants, inspiring them to forge ahead
in their journeys towards improved health and fitness, (c) nurtured participants’ sense of
The Importance of Social Support in the Rehabilitation 265

mattering through demonstrations of value and concern, and (d) relieved participants of
everyday responsibilities during a stressful stage in their lives by providing instrumen-
tal aid. Thus, our work was the first to offer deep insights into the lived interactions that
support rehabilitation from bariatric surgery. Importantly, our qualitative approach also
allowed us to identify what participants found frustrating during their bariatric experi-
ence, in that many of them expressed a desire for more or better support (cf, Grypdonck
2005). Thus, findings ‘fleshed out’ the process of social support and the meaning of this
support in participants’ lives and in their rehabilitation journeys, from the perspectives of
the participants, themselves.

Lesson #2: Recognise the Value of Qualitative Methods in

Verifying and Complementing Existing Theory
Although qualitative methods are often associated with the development of new theory,
they also present a valuable way to confirm and complement existing theory, especially
when the existing theory aligns closely with patterns observed within a given qualitative
data set (Corbin and Strauss 2008). Thus, although the inductively generated themes we
discussed within this chapter represent the particulars of how social support unfolded
in our participants’ bariatric journeys, findings also indicate that types of social support
identified in prior research – namely, informational, emotional/affective, instrumental,
and companionship support (Bambina 2007) – functioned in participants’ lives, working
in diverse ways to promote their well-being. For example, informational support helped
participants to proactively confront specific, potentially stress-inducing decisions and sit-
uations (e.g., the decision to pursue bariatric surgery, which bariatric procedure to choose,
how to troubleshoot various post-surgery challenges). Instrumental support helped par-
ticipants to complete practical, daily tasks when they were unable to do so independently.
Emotional and companionship support assisted participants as they sought to address
affective concerns such as anxiety about the surgery or the surgery decision and/or when
others in their lives perceived that they needed encouragement, reassurance, or motiva-
tion. Thus, the talk of the participants highlighted the ways in which the support extended
to them varied across the surgery experience depending on their situational support needs
and confirming existing work. Overall, our findings highlighted the contextual grounding
of support or the idea that, to be helpful, support provided should align with the needs
triggered by the particular situation (cf, Bianco 2001).

Lesson #3: Acknowledge the Value of Qualitative Findings in Extending

(or Refuting) Existing Ways of Knowing, Remain Open to New
Interpretations That Do Not Strictly Cohere to A Priori Theory
Throughout the research process, scholars who conduct qualitative/interpretive work
remain open to new information, grounding their interpretations in the data, and allowing
their study to ‘unfold’ cooperatively with the assistance of the participants and the
insights gained from the data. This is consistent with the interpretivists’ assumption that
one cannot possess a priori knowledge of participants’ diverse, lived realities (Anderson-
Hudson and Ozanne 1988, p. 513). Thus, although participants’ accounts verified Thoits’s
(2011) suppositions about the support behaviours provided by close others and like oth-
ers (i.e., primary and secondary others, respectively), a key contribution of our qualitative
inquiry was to recognise a third group of supporters – health professionals – not included
within Thoits’s typology, underscoring the value of not limiting interpretations to a priori
266 Enhancing Healthcare and Rehabilitation

theoretical understandings (Pope and Mays 1995; Sofaer 1999). Although health profes-
sionals maintained weak ties with participants (Adelman et al. 1987), they nonetheless
provided valuable forms of emotional/affective and informational support to them.
Certainly, in some cases, support provided by like others helped participants to achieve
goals similar to the support provided by health professionals (e.g., to feel encouraged,
to address problems). From participants’ perspectives, however, like others and health
professionals brought differing forms of credibility to bear upon the support provided.
In the case of the like other, credibility was built based upon experiences shared between
the supporter and the participant. For the health professional, credibility was rooted in
professional expertise, which produced a sense of authority and trustworthiness. Both
types of credibility were valued by participants.
Our qualitative inquiry expands Thoits’s framework in other ways as well. As noted,
findings extend Thoits’s (2011) ideas by suggesting that even role models who are not
aspirational may function as social support resources, inviting productive and enriching
developments in the self. Again, this finding was not anticipated, but instead, emerged
unexpectedly from participants’ narratives, amplifying our understanding of the ways in
which role models may be invoked in the social support process.

Lesson #4: Value Qualitative Approaches for Their Capacity to

Reveal Issues of Hegemony and Power and to ‘Give Voice’ to Those
Whose Voices Have Been Marginalised in Other Contexts
As Sofaer (1999) reminds us, qualitative/interpretive methods – and in particular, in-
depth interviews – are ideally suited to clarifying values/power relations and to ampli-
fying the perspectives of the disempowered. Indeed, in their accounts, participants
highlighted the ways in which issues of power operated within their social networks
and were negotiated within the context of the social support provided, influencing their
bariatric journeys in both positive and negative ways. Key here were issues of power
that shape sociocultural understandings of what represents an acceptable body. Although
Thoits (2011) acknowledges that social support may foster perceptions of mattering, our
work illuminates the significance of social support in promoting a sense of mattering
amongst a marginalised population such as our participants – a group of women whose
bodies had at one time disrupted cultural ideals of thinness and who had therefore been
targets of obesity bias and discrimination. Specifically, participants’ narratives bring to
the fore the way in which interactions with health professionals, like others, and close
others prompted participants to feel like they mattered, which may have been particularly
salient for participants because, as larger persons, they had frequently been recipients of
the message that they did not matter. Thus, to be valued by others represented a departure
in participants’ experience and allowed them to find value in themselves and to build
confidence and self-respect. Conversely, recognising that others supported participants’
decision to move forward with surgery only because their bodies transgressed norms of
social acceptability was associated with negative feelings about the self, leaving partici-
pants frustrated and ambivalent.

Lesson #5: Consider the Implications of Qualitative

Research Findings for Evidence-Based Practice
Because qualitative methods are grounded in personalised knowledge, researchers have
argued that findings from interpretive work should figure centrally in evidence-based
The Importance of Social Support in the Rehabilitation 267

practice, which has emerged as the standard of care within the health profession. Evidence-
based practice is associated with the ‘thoughtful…and judicious use of the best evidence
available to develop the best [health care] practices for individual patients’ (Sandelowski
2004, p. 1369). Accordingly, findings from our work may suggest practical implications
for the care of bariatric patients. For instance, that so many of our participants benefit-
ted from support received from like others and health professionals within the context of
their support group prompts us to recommend that a support group model be adopted at
all healthcare facilities performing bariatric procedures; prior work, as well, points to the
value of the support received from such groups (Elakkary et al. 2006; Hafner et al. 1991;
Orth et al. 2008; Song et al. 2008). If a given facility does not have the resources to offer a
support group independently, perhaps it could join together with another facility in the
area to provide such a service. Online, interactive support groups, which require further
study for their impacts and effectiveness, also could enhance support systems, particu-
larly for patients who live far distances from group facilitators/one another or who have
demanding work and family schedules.
A second – and clear – implication for practice stems from our finding that some partici-
pants experienced a desire for more or ‘better’ support. That several of our participants felt
inadequately supported implies, perhaps, that supporters of individuals seeking bariatric
surgery may need direction or guidance in how they can best provide support, an observa-
tion that Linda shared within her narrative:
‘What would be nice would be some kind of a hand-out or little booklet for your family
members to read so they can say, “Well [they’re] not always going to feel [their] best.
There might be times they don’t feel good. But be nice to them because they’re in pain.
Don’t try to get them to eat or drink something that they’re not supposed to”’ (Linda).
(Ogle et al. 2016, p. 189)

As Linda suggests, guidance to supporters could include distributing educational materials

such as hand-outs or brochures to supporters. Alternatively, such guidance also could take
shape in the form of an online resource or app, which would be broadly available to a variety
of potential supporters. Ideally, the development of such resources would be informed by
input from varied stakeholders – including bariatric patients, health professionals, and
supporters – and could be employed as tools in diverse settings (e.g., individual or group
counselling/support sessions, appointments with health professionals).
Additionally, some participants encouraged their supporters to join them at doctor’s
appointments and/or to attend support group meetings with them. In such contexts,
accurate information was shared and supporters’ misperceptions were resolved. In the
following comment, Betty explains how she sought to leverage the support of health pro-
fessionals to normalise her experiences of bariatric surgery for her husband, so that the
couple could arrive at a mutual understanding or definition of the situation (Ball 1972),
thereby relieving some of the anxiety prompted by her husband’s previous misunder-
standings about her surgery:

‘[My husband] has been to all of [the support group meetings]...Sometimes…he thinks
I should do something better than I am…He gets on me, like, “that looks like an awful
lot of pasta. Are you supposed to have that much pasta?”…But, in these meetings, he’ll
hear other people say things…And, I’ll just kind of look like at him like…. “See? That’s
just how it is!”…So, when he comes with me to doctor’s appointments…and to the sup-
port group, he hears. And, he hears [the doctor] say, “She’s doing great. Whatever she’s
doing right now, let her do it how she’s doing it. She’s doing great”. So, I think that helps
[him] understand more.’ (Betty)
268 Enhancing Healthcare and Rehabilitation

Accordingly, when possible, support group facilitators may wish to engage members of
participants’ social support networks in the group’s activities. In some cases, it may even
be appropriate to design events or activities exclusively for members of bariatric patients’
social support networks. Helping supporters to better understand the lived experiences
and support needs of bariatric patients ultimately will enhance the quality of patients’
rehabilitation journeys.
In conclusion, our qualitative approach to studying the role of social support in the
bariatric patient experience: (a) provided nuanced and complex understanding of the
effects of and needs for social support, (b) facilitated relating the data to varied theories
and past work that together deepened understanding, (c) uncovered some supports not
clearly identified in prior work, and (d) suggested potential ways to enhance supportive
experiences for bariatric patients. As such, the accounts we collected from female bar-
iatric patients offer an important window on the perspectives, subjective constructions,
and meaning-making of these patients as they recall their lived experiences during the
bariatric process.

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17
Qualitative Research on Caregiving Outcomes

Shilpa Krishnan, Monique R. Pappadis and Timothy A. Reistetter

CONTENTS
Introduction ................................................................................................................................. 271
Role of Caregivers in Patient-Centred Care ............................................................................ 272
Caring for a Seriously Ill Patient .......................................................................................... 272
Collective Caregiving in Hospice Setting ........................................................................... 273
Caregiving Preparedness ...................................................................................................... 273
Caregivers’ Relationships...................................................................................................... 273
Cultural Differences in Caregiving ...................................................................................... 274
Caregivers Caring for Multiple Individuals, ‘Sandwich Generation’ ............................ 275
Caregiving Burden ................................................................................................................. 275
Qualitative and Mixed Methods to Explore Caregiver Outcomes ...................................... 275
Guidelines for Reporting Qualitative Research ................................................................. 275
Data Collection Methods ....................................................................................................... 276
Methodological Approach .................................................................................................... 276
Grounded Theory .............................................................................................................. 276
Content Analysis................................................................................................................ 277
Phenomenology ................................................................................................................. 278
Framework Analysis ......................................................................................................... 278
Photovoice .......................................................................................................................... 279
Qualitative Analysis Software .............................................................................................. 279
Meta-ethnography Aka Qualitative Meta-synthesis ......................................................... 279
Quality Appraisal of Qualitative Research ......................................................................... 280
Mixed Methods Design ......................................................................................................... 280
Future Directions......................................................................................................................... 281
References .................................................................................................................................... 281

Introduction
Each year, around 44 million Americans provide 37 billion hours of unpaid informal
care for adults or children with chronic conditions (National Alliance for Caregiving and
American Association of Retired Persons [AARP] Public Policy Institute 2015). Caring for
a loved one can be a deeply rewarding experience, as individuals come closer to each other
at a time of adversity. However, caregiving is also physically and emotionally demanding
(Krishnan et al. 2017b). It is not a surprise that caregiving is an international need. Informal
caregivers play a very important role in managing the health of individual who needs
assistance. An informal caregiver is usually a spouse, partner, family member, neighbour,
or friend. Informal caregivers usually are not paid for the services they provide to their

271
272 Enhancing Healthcare and Rehabilitation

loved one needing assistance. Informal caregiving involves a range of services such as
assistance with activities of daily living and instrumental activities of daily living. In con-
trast, formal caregivers are those who are paid for their services (e.g., nurse practitioner).
In this chapter we use the terminology ‘caregivers’ to describe informal caregivers.
Qualitative research provides us with rich narrative data on an individual’s behaviour,
experiences, perspectives, beliefs, values, or motivation in a given situation. The first sec-
tion of this chapter focuses on the role of caregivers in patient-centred care. The second
section describes the methods, data collection processes, and analyses used in qualitative
and mixed methods research to explore caregiver outcomes.

Role of Caregivers in Patient-Centred Care

Patient-centered care is a multistage process, and incorporating the caregiver’s needs
and perspectives is part of this process (Gillick 2013). Including caregivers in the patient’s
continuum of care will strengthen the relationship of the patient and the caregiver and
also empower caregivers to continue with their caregiving duties. A qualitative study
exploring mobility outcome preferences of stroke survivors from the caregiver’s per-
spectives revealed that stroke survivors and their caregivers differ in their outcome
preferences (Krishnan et al. 2018). Caregivers were more often concerned for the stroke
survivor’s safety, wanted to prevent falls, and have appropriate home modifications.
Caregivers provide the first source of information on the patient’s health history, abil-
ities, and needs. In spite of this, informal caregivers are usually marginalised by the
healthcare system.

Caring for a Seriously Ill Patient

Critically ill individuals may not be able to make their own healthcare decisions. In such
instances, their caregivers take on an additional role as a substitute decision maker. The
frequency, intensity, and duration of caregiving increases whilst caring for a seriously
ill patient, e.g., multiple chronic conditions, end of life, dementia, or Alzheimer’s disease
(Schulz et al. 2018). These caregivers may also have the power of attorney that gives them
legal power to make healthcare decisions for their loved one. The interactions and commu-
nications between family and heath care providers, also known as therapeutic alliance, must
begin before formal end-of-life conversations. Qualitative methods have been utilised to
strengthen the therapeutic alliance and identify the facilitators and barriers to establishing
such alliance early on, with family members caring for critically ill individuals (Kalocsai
et al. 2018).
Qualitative research can also be utilised to perform a program evaluation, e.g., test the
feasibility and effectiveness of a program from the caregivers’ perspectives. Healthcare
professionals and policymakers will routinely want information on the sustainability,
feasibility, and utility of an intervention or program to understand whether it ultimately
benefits patients. Engaging caregivers in the program evaluation process provides a
unique perspective for clinicians to assess the healthcare service delivery. For instance,
Boucher (2018) engaged caregivers through focus group interviews and face-to-face
semi-structured interviews to understand the acceptability of a community-based pallia-
tive program (Boucher et al. 2018). Boucher’s study noted that some informal caregivers
Qualitative Research on Caregiving Outcomes 273

expressed positive feelings related to acceptability of the new community-based palliative

care service. A wife of a 72-year-old male patient mentioned,
I don’t feel embarrassed to share feelings with them, because they understand it, and
they’re very good listeners and that’s very important. I think that’s lacking in our medi-
cal delivery system and it’s not lacking here.

However, some informal caregivers were fearful to accept the community-based palliative
care service, as they perceived that this service would inhibit their loved one’s access to
necessary medical services.

Collective Caregiving in Hospice Setting

Hospice care provides supportive and palliative care during the end of life for patients
with terminal illness or injury. Use of hospice care is associated with better pain control,
improved patient satisfaction, and decreased hospital and ICU mortality (Kleinpell et al.
2016). Family members of patients receiving hospice care report greater satisfaction and
improved caregiver outcomes compared to other settings of care (Teno et al. 2004). There
has been an increase in the number of studies using qualitative approaches to explore
the perceptions and experiences of patients of hospice and their caregivers. A qualita-
tive study explored the knowledge and perception of hospice care, barriers to hospice
enrolment, and the preferences to improve access and knowledge amongst patients with
metastatic cancer and their caregivers (El-Jawahri et al. 2017). Using semi-structured
interviews provided an in-depth look at the perceived barriers of caregivers to using
hospice care, e.g., fear of outcomes (Maybe there is a false sense of security that everything is
okay as long as they stay out of hospice), dealing with the guilt of perceived abandonment
(I think every family strives to provide the services the patient needs because they feel a sense of
abandoning the patient if they dole that off on someone else), and lack of understanding the role
of hospice care.

Caregiving Preparedness
The process of caregiving usually involves a steep learning curve. Informal caregivers
are not usually prepared to provide caregiving services. The role of informal caregivers
is not static, but continually changes depending upon the need of the patient. Sometimes
a caregiver is a ‘tech support’, ‘friend’, ‘chef’, ‘house cleaner’, ‘advocate’, or ‘healthcare
provider’. Given the multifaceted process of caregiving, it is important to provide educa-
tion and training to caregivers based on their current needs. Qualitative methods can be
used to assess the knowledge of caregivers to carry out complex caregiving activities such
as medical procedures, personal care, medication management, or care coordination tasks.
For instance, an exploratory qualitative study sought to understand the support needs
of 15 caregivers for home mechanical ventilation safety from the healthcare team (Schaepe
and Ewers 2018). This study revealed that the caregivers anticipated knowledge and skills
from healthcare professionals for various strategies, especially when the providers were
not available (e.g., changing a tracheostomy tube). Caregivers mostly felt unprepared and
did not know what to do during emergency.

Caregivers’ Relationships
Caregivers caring for their loved one may have complicated relationships. Separately con-
sidering the views of individuals and their caregivers who experience a change together
274 Enhancing Healthcare and Rehabilitation

may not provide a holistic view of the disease and rehabilitation process. A narrative
approach where the patient and caregiver provide the shared life story will help address
the ambiguity, especially amongst spousal caregivers (Riekkola Carabante et al. 2017).
Spousal caregivers often feel lonely and often experience a reduced connection with their
existing social networks. The complexity of social interactions increases because of the
their loved one’s changed behaviour. The information from qualitative studies will help
rehabilitation professionals develop programs for caregivers as they incorporate support
from their social network.
Developing, evaluating, and providing accessibility to dyadic interventions that incor-
porates both the individuals’ relationship and their shared identity will promote a healthy
relationship amongst caregivers and those they care for (Kitwood and Bredin 1992).
A qualitative study assessed the feasibility of a therapeutic community-based group inter-
vention using semi-structured interviews by incorporating the perspectives of 12 dyads
(Clark et al. 2018). The dyadic intervention helped caregivers develop empathetic
relationships and enhanced the personal relationships with their loved ones. In addition,
the caregivers also developed new social networks and friendships with other caregivers
in their community group.

Cultural Differences in Caregiving

Racial and ethnic minority caregivers provide more care to their loved ones compared to
non-Hispanic whites. This is partly because minority caregivers are less likely to use for-
mal services. Caregiving needs and experiences significantly differ among various ethnic
backgrounds. A qualitative study explored the experiences amongst caregivers from
different ethnic groups based on their cultural values and beliefs (Pharr et al. 2014). Pharr’s
study included 35 caregivers from various ethinicities including European Americans,
Asian Americans, Hispanic Americans, and African Americans. The results of their study
revealed that caregiving was considered very natural amongst some cultural groups,
where carers assumed caregiving to be their responsibility. Pharr’s study also revealed
that women and younger adults usually adopt the responsibility of caregiving among
some ethnic groups. Another qualitative study revealed that Korean caregivers do not
have adequate knowledge and understanding of the disease process (e.g., demetia), which
restricts them from seeking out supportive services (Richardson et al. 2017).
Culture not only includes race/ethnicity, but also sexual or gender orientation, rurality,
religion, language, and other characteristics and norms of a particular group of individuals.
Qualitative studies have identified sexual and gender minority caregivers experiencing
sexual and gender prejudice, have valued friends or community members as their families
choice for support. This cohort’s needs often go unrecognised, and they value the impor-
tance of acknowledging the diversity within their cultural group (Washington et al. 2015).
Rurality could also affect patients’ access to services and caregivers’ need for support ser-
vices. Caregivers of stroke survivors living in rural areas described less family support
across the care continuum (Cameron et al. 2013). Several studies have used qualitative
methods to develop, culturally adapt, or improve health programs to reach caregivers and
patients living in rural areas (Danzl et al. 2013, Cherry et al. 2017, Dionne-Odom et al. 2018).
Spendelow et al. (2017) identified several coping strategies exhibited by male carers that
ranged from ‘finding meaning and purpose’ in life to exhibiting a masculine gender role
identity by ‘promoting the association of traditional masculinity’ with caring (Spendelow
et al. 2017).
Qualitative Research on Caregiving Outcomes 275

Caregivers Caring for Multiple Individuals, ‘Sandwich Generation’

A significant proportion of caregivers care for multiple individuals. The ‘sandwich genera-
tion‘ refers to those middle-aged caregivers who care for their parents whilst raising a child
below 18 years old or supporting an adult child (Parker and Patten 2013). Adults younger
than 40 years and Hispanics are more likely to be included in this cohort. Sandwich gen-
eration caregivers are more likely than other caregivers to be stressed, be pressed for time,
and face economic and financial burden.
Around 60 percent of informal caregivers hold either full- or part-time jobs (Family
Caregiver Alliance 2016). The burden of caregiving usually strains the informal care-
giver’s work environment. A qualitative study exploring the impact of caregiving on
‘sandwich generation’ caring for older adults with osteoarthritis revealed that these care-
givers often find it challenging to balance their work duties and dual caregiving respon-
sibilities (Barker et al. 2017). These caregivers are more likely to have missed time from
work and have inadequate productivity. Paid leave is short, usually less than 1 month,
and caregivers find it challenging to balance their responsibilities at work with their
caregiving duties.

Caregiving Burden
Caregivers are at an increased risk for behavioural health and other health-related prob-
lems (Haines et al. 2015). In addition to providing patient care, informal caregivers need
support themselves. Caregiving can be time consuming, physically demanding, and emo-
tionally stressful (Krishnan et al. 2017b). Although caregivers face a huge economic and
financial burden (Ferrell and Kravitz 2017), their needs are not fully assessed. Qualitative
research methodology provides a way to capture and assess the burden and needs of care-
givers. It is important to effectively screen caregivers to ensure that they do not harm the
patient for whom they provide care.
Respite services provide caregivers a temporary break in their caregiving activities,
which can significantly reduce their physical and emotional burden. To understand the
feasibility of respite care, a qualitative study interviewed 24 Scottish caregivers’ on their
communication experiences with respite care staff. Researchers were interested in the
caregivers’ perceptions of barriers with the facilitators whilst sharing information about
the older adult they care for and the most effective modes of sharing relevant information
(McSwiggan et al. 2017). McSwiggan’s study revealed a delay in receiving information on
respite care services and eligibility to receive these services.

Qualitative and Mixed Methods to Explore Caregiver Outcomes

Guidelines for Reporting Qualitative Research
The consolidated guidelines for reporting qualitative studies guideline includes a 32-item
checklist designed to promote transparent reporting of qualitative studies (Tong et al.
2007). A qualitative study sought to understand the interactions of informal caregivers
with primary care healthcare providers in the decision-making process within the primary
care team caring for chronically ill elderly patients (Doekhie et al. 2018). Doekhie in her
276 Enhancing Healthcare and Rehabilitation

study presented a table describing the processes the study adhered to each of the 32 items.
For example, whilst describing the researcher’s relationship with the participants, Doekhie
states,

There was no relationship between the researcher/interviewer with the patients, infor-
mal caregivers, and 32 of the professionals. There was a relationship with six of the pro-
fessionals. The researcher met these professionals during academic conferences or they
were introduced to the primary researcher by colleagues of the research department for
the purpose of this research project.

Data Collection Methods

Qualitative research methods include collecting, analysing, interpreting, and present-
ing results from a narrative. Watching what people do (participant observation) pro-
vides more in-depth information compared to listening to what they do (Bernard et al.
1984). To explore the distribution of responses across a group, one-on-one interviews
should be utilised (Bernard et al. 2016). Focus groups allow the researcher to explore
complex constructs and quickly gain information from multiple participants in a rela-
tively short time (Krueger and Casey 2014). Responses in a focus group interview will
not be independent, as people will feed off one another. To complement all data collec-
tion methods, field notes provide an additional rich source of data. Qualitative studies
can utilise a combination of multiple data collection approaches to discover an underly-
ing phenomenon or build a theory. Barker and Womack’s studies incorporated caregiv-
ers’ perspectives using multiple data collection approaches (Barker et al. 2017, Womack
et al. 2018).
In qualitative research, data collection and analysis should be closely connected
(Walker 2014). The researchers should have a general sense of how the data will be analysed to
design a semi-structured questionnaire. Structuring the semi-structured questions and data
collection methods depend upon our assumption and what we may want to acquire from
the data. Let us look at an example. Informal women caregivers tend to have higher levels of
depression and psychological distress compared to their male counterparts (Schoenmakers
et al. 2010). To understand the differences in characteristics amongst a cohort of individuals
(in this case, higher emotional distress amongst informal women caregivers), the data were
collected using focus groups that included informal women caregivers.

Methodological Approach
It is important to recognise the qualitative methodological approach before deciding to
conduct qualitative research. For instance, the sampling, data collection, and analysis for
a study utilising a grounded theory framework will be inherently different from a study
employing a discourse analysis framework.

Grounded Theory
Grounded theory is a widely used qualitative methodology that relies on the lived
experiences of individuals and the social constructs that build upon these experiences
(Glaser and Strauss 2017). Grounded theory is primarily inductive in nature, which
means the research study is exploratory and is conducted to acquire information to
build a theory. The research questions using grounded theory help explain ‘how’ and
Qualitative Research on Caregiving Outcomes 277

‘why’ individuals behave a certain way in similar or different contexts. The data for
grounded theory can be ethnographic (participant observation), focus group discussions,
or in-depth interviews.
Womack (2018) adopted the principles of a constructivist grounded theory framework in
her study of 11 occupational therapists who were routinely involved in training informal
caregivers to manage the health of older adults. The constructivist grounded theory relies
on making meaning of the data from the participant’s experiences to generate a theoretical
interpretation (Charmaz 2000). Compared to healthcare providers who follow the biomed-
ical paradigm, rehabilitation professionals, including occupational therapists, position
caregivers to play a greater role in the rehabilitation of the individual. Womack’s goal
was to understand the complexity of interactions of occupational therapists with informal
caregivers (Womack et al. 2018). The participants recruited in this study were targeted
purposefully through a LISTSERV of occupational therapists caring for older adults. The
data for Womack’s study were collected through two open-ended focus group interviews
over 2 days and were supplemented by handwritten observation notes by the researchers
and reflective memos from each participant. Grounded theory relies on multiple data col-
lection sources for rich, empirical, and trustworthy data.
The first stages of coding in grounded theory begins with line-by-line coding
(open-coding), to identify useful concepts and develop low-level categories. Womack’s study
utilised open-ended codes such as caregiver caught in potentially unsafe situation (Womack
et al. 2018). Using constant comparative analysis, the data for the rest of the interviews are
coded by comparing the similarities and differences between the emerging concepts. The
constant comparative approach, as the name implies, involves comparing similarities and
differences to trace out emerging codes and develop a theory (Hallberg 2006). Higher-level
analytical categories (axial or selective coding/focused codes) are developed at later stages
of the analysis by linking and associating the codes to one another. One of Womack’s
focused codes was therapist is expert responsible for ensuring safety of the situation (Womack
et al. 2018). The researchers should develop and maintain a codebook of memos describing
the definitions and rationale for each of the categories coded (Strauss 1987). A theoreti-
cal model is generated beginning with the analysis of the first interview and refined as
emerging concepts arise from additional interviews. The model is refined using constant
comparative analysis. Womack’s study hypothesised a theoretical model in which occu-
pational therapists perceive themselves as trainers of caregivers, where the occupational
therapists expertise is prioritised to make healthcare and treatment decisions for older
adults (Womack et al. 2018).

Content Analysis
Qualitative content analysis has several different techniques: conventional, directed, or
summative (Hsieh and Shannon 2005). Conventional content analysis is a technique used
to describe a phenomenon. Codes are developed from the actual text or words, and the
names of categories are derived from the data. This technique is often used when there is
not an a priori theory driving the study. Directed content analysis involves using a prior
theory or hypothesis and analysing data to confirm or validate the theory or framework
(Bernard et al. 2016). It is common practice to rank order the frequency of codes and use
exemplars to provide a description of the codes or themes identified. Often called ‘quanti-
tative content analysis’ or ‘text data mining’, this method can be performed using popular
qualitative data analysis software, such as NVivo, MaxDictio of MAXQDA Plus or Analytics
278 Enhancing Healthcare and Rehabilitation

Pro, or ATLAS.ti. Summative content analysis is often performed by identifying certain

words or concepts, quantifying their frequency of occurrence, and then interpreting the
context or meaning of the words used. Hence, content analysis is considered quantita-
tive in nature compared to grounded theory, which is purely qualitative. Data collection
in content analysis is similar to other qualitative approaches in the use of interviews,
focus groups, or observations. Caregiver qualitative studies using content analysis have
also included unique media forms, such as mobile apps (Grossman et al. 2018), diaries
(Egerod et al. 2017), or social media (Gage-Bouchard et al. 2017).

Phenomenology
Phenomenology, based on the European philosophy, utilises personal narratives to
describe the lived experience of an individual of a phenomenon, (Sokolowski 2000). This
process includes using open-ended questions and avoiding the interviewers’ and research-
ers’ biases, also known as ‘bracketing’. The concept of bracketing must be initiated whilst
forming the research questions of the study (Bernard et al. 2016) and followed through the
data collection, analysis, and interpretation stages (Chan et al. 2013). A qualitative study
using the phenomenological approach adopted the principle of ‘bracketing’ by consciously
putting aside the research team’s professional background and experience in nursing and
psychology, whilst probing young adults with parental multiple sclerosis on the impact of
caregiving in their daily lives (Moberg et al. 2017).
Open-ended questions allow the researcher to capture individuals’ ideas in their own
words compared to close-ended questions (yes/no) (Cannell and Kahn 1968). A qualitative
study explored the perspectives of adult children on the impact of caregiving for an indi-
vidual with osteoarthritis, utilising an interpretive phenomenological approach (Barker
et al. 2017). Unlike grounded theorists, phenomenologists include only data sources that
might explain the phenomenon or experience (e.g., individuals who have lived through an
experience). To completely describe the phenomenon, Barker’s study recruited only adult
children caring for parents with ‘severe’ osteoarthritis that caused significant levels of
pain and mobility limitations. The data analysis for a study using the phenomenological
approach is similar to the grounded theory (as described above), except that the research-
ers do not build a theoretical model (Starks and Trinidad 2007).

Framework Analysis
Framework analysis consists of five key stages: (1) familiarisation – immersing oneself in
the data by listening to audio recordings, reading transcripts, studying fieldnotes, and
then listing key ideas and recurrent themes; (2) identifying a thematic framework – based
on the identified concepts and themes that may be applied to transcripts and refined as
needed; (3) indexing – all data are read and coded according to the thematic framework,
either numerically or descriptively; (4) charting – thematic references are rearranged by
core themes, which may be developed by thematic analysis by themes across all respon-
dents or by case for each respondent across themes; and (5) mapping and interpretation –
analysing key characteristics that may be used to create a schematic diagram of the
phenomenon studied (Ritchie et al. 1994). Cameron et al. (2013) used framework analysis
to identify the changes in support needs of stroke family caregivers across the care con-
tinuum. Specifically, they used the “Timing it Right” framework to inform their analysis,
a conceptual framework to address the need of caregivers of stroke survivors across five
phases of recovery: (1) admission to acute care; (2) medical stabilisation; (3) preparing for
Qualitative Research on Caregiving Outcomes 279

discharge home; (4) initial adjustment to living at home; and (5) adaptation to community
living (Cameron and Gignac 2008).
Framework analysis may also be used to create typologies, detect associations between
concepts, and explain how, when, and why a phenomenon occurs. For example, in one
study, caregiver perceptions during the end-of-life period were characterised along two
axes, one which identified four caregiver-cancer patient relationships, and one involving
subjective caregiving experiences made up of distinct concepts: care spontaneity, death,
sympathy for patient emotions, impressions on witnessing death, and introspective reflec-
tions in bereavement (Mori et al. 2012).

Photovoice
Photovoice is a community-based participatory action research methodology that relies
on the concept that the participants (e.g., caregivers) are experts on their own life (Wang
et al. 1996). Participants are provided cameras to photograph events in their life related
to a specific research question. Participants also provide reflections on each photograph
and are asked to comment on ‘why a particular situation exists’, and ‘what can be done to
bring about a change, if needed’. This methodology incorporates a participant driven pro-
cess, in which participants meet in a group to identify relevant themes depicted through
the photographs and reflections. Faucher (2015) used this methodology to understand
the supports and challenges perceived by caregivers caring for older adults (Faucher and
Garner 2015). The results of the study (photographs) were presented in an art exhibit which
was attended by stakeholders and policymakers. This is a powerful method to bring about
a desirable change on a grass-roots level. Photovoice is a powerful visual methodology
that can be used as a supplemental qualitative methodology. It can also be used to explore
contextual factors that may serve as facilitators or barriers to an individual’s or commu-
nity’s health.

Qualitative Analysis Software

Software applications such as Atlas.ti (Friese 2014), NVivo (Castleberry 2014), or MAXQDA
(Saillard 2011) can be used to code qualitative data. A scoping review exploring the needs
of stroke survivors from the perspectives of caregivers utilised NVivo 10 to analyse,
code, and manage the qualitative data (Krishnan et al. 2017a). Doekhie’s study utilised
Atlas.ti to analyse the qualitative interview transcripts to understand the involvement of
informal caregivers with primary care providers (Doekhie et al. 2018). Schaepe’s study
utilised MAXQDA 11 to explore the support needed by caregivers caring for individu-
als on home mechanical ventilation (Schaepe and Ewers 2018).

Meta-ethnography Aka Qualitative Meta-synthesis

Meta-ethnography is a systematic and a rigorous way to synthesise results from qualitative
research studies (Noblit et al. 1988). A meta-ethnography was performed to understand
the perspectives of informal caregivers caring for individuals with stroke on commu-
nity healthcare services and primary care (Pindus et al. 2018). The meta- ethnography
revealed the caregiver’s need for communication and quality of information to enhance
post-discharge care, education, and training to care for individuals with stroke. In
addition, caregivers expressed their frustrations with the delay in the patient’s reha-
bilitation therapy and lack of continuity of care following stroke hospitalisation. The
280 Enhancing Healthcare and Rehabilitation

meta-ethnography also revealed that involving patients and caregivers within the first
year after stroke promotes self-management of the patient’s condition. Meta-ethnography
is powerful, as it provides potential patient- and family-centred solutions to manage the
individual’s health and well-being.

Quality Appraisal of Qualitative Research

Well-established guidelines proposed by Walsh and Downe (2006) or the Critical Appraisal
Skills Programme (Kuper et al. 2008) can be utilised to appraise the quality of qualitative
research. Systematic reviews and meta-ethnographic reviews using qualitative research
have adopted these guidelines to determine the credibility of results obtained from quali-
tative studies (Krishnan et al. 2017a, Pindus et al. 2018). These tools assist in appraising
the quality of the studies by assessing the research question, sampling, data collection
approaches, analysis, interpretation, and presentation of the results.

Mixed Methods Design

Integrating and drawing inferences from more than one method to answer a single
research question is known as mixed methods design. Both qualitative and quantitative
methods can be used in the same research project (Creswell and Clark 2017). Methods
can be combined from the same research paradigm, e.g., focus groups and observation
(Morse 2009). The combination of different methods provides better understanding of
the research question. Mixed methods has many advantages that include triangulation
of the research results, where the weakness of one method is often counterbalanced by
the strengths of the other. For instance, a study mixed both qualitative and quantitative
research methods to test the feasibility of a caregiver coping program that included
psycho-educative interventions (Pihet and Kipfer 2018). This mixed methods study
utilised the convergent parallel design, where the quantitative and qualitative data
were collected concurrently, analysed separately, and interpreted together (Creswell
and Creswell 2017). Qualitative semi-structured interviews with informal caregivers
were conducted to understand the impact and acceptability of the psycho-educative
interventions from the perspectives of informal caregivers (Pihet and Kipfer 2018). Using
qualitative methods in this study’s context enhanced the knowledge of the benefits of the
intervention. For example, caregivers mentioned that the group format of the intervention
was significantly helpful to reduce depression amongst themselves. Evidence from the
qualitative research also provides patient-centred evidence to modify or retain some
parts of the intervention or the whole intervention itself. For instance, the quantitative
results of Pihet’s study revealed that some strategies such as ‘reframing’ were difficult
to implement. However, the results from the qualitative interview highlighted that
the ‘reframing’ strategy in fact enhanced the caregiver’s skill to control their negative
emotions. The quality of mixed methods can be evaluated by utilising established
quality assessment tools such as the Health Care Practice R&D Unit Evaluation tool for
mixed methods studies (Long et al. 2002) or Mixed Methods Appraisal Tool (Pace et al.
2012). A scoping review exploring the needs of stroke survivors from the caregivers’
perspectives used the Mixed Methods Appraisal Tool to evaluate the quality of mixed
methods (Krishnan et al. 2017a).
Qualitative Research on Caregiving Outcomes 281

Future Directions
Understanding the role of caregivers and involving them in the patient’s continuity of care
will decrease care fragmentation and increase quality. A scoping review revealed that
only a limited number of photovoice-based articles are published in rehabilitation and
disability related journals (Lal et al. 2012). This could be attributed to limited knowledge
of the methodology amongst rehabilitation professionals. Future work must focus on iden-
tifying the burden and needs specific to the caregiver population. Very few studies have
explored the impact of caregiving on ‘sandwich generations’ (Barker et al. 2017). Future
work using qualitative methodology must explore the needs of this cohort across various
disease process and must include caregivers in designing interventions. Perceptions of the
sandwich generation must also be incorporated whilst evaluating the implementation of
a program or intervention in healthcare settings and communities. Caregivers of lesbian,
gay, bisexual, and transgender adults have unique experiences that may be overlooked by
the healthcare community (Price 2010), a goal for future research. Another understudied
area involves the needs and expectations of male caregivers.

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18
Multiple Sclerosis

Yvonne C. Learmonth

CONTENTS
Introduction.................................................................................................................................. 286
Method........................................................................................................................................... 288
Search Strategy........................................................................................................................ 288
Inclusion and Exclusion Criteria........................................................................................... 288
Quality Assessment................................................................................................................. 288
Data Gathering and Analysis................................................................................................ 290
Results............................................................................................................................................ 290
Research Groups...................................................................................................................... 291
Review Articles........................................................................................................................ 291
Original Papers........................................................................................................................ 294
Theme 1: The Wider MS Community ...................................................................................... 298
Participants............................................................................................................................... 338
Quality Assessment................................................................................................................. 338
Appraisal of Studies................................................................................................................ 339
Healthcare and Fitness Professionals................................................................................... 339
Opinions from Carers............................................................................................................. 339
Summary..................................................................................................................................340
Theme 2: Opinions on Exercise Associated with Exercise Interventions.............................340
Participants............................................................................................................................... 341
Quality Assessment................................................................................................................. 341
Appraisal of Studies................................................................................................................343
Group-Based Exercise Interventions....................................................................................343
Home- and Individual-Based Exercise Interventions........................................................343
Interventions and New Technology.....................................................................................345
Summary..................................................................................................................................346
Theme 3: Moving When You Have MS.....................................................................................346
Participants............................................................................................................................... 347
Quality......................................................................................................................................348
Appraisal of Studies................................................................................................................ 349
Balancing MS and Exercise.................................................................................................... 349
Communicating about Physical Activity and Exercise...................................................... 350
Harnessing Inner Strategies................................................................................................... 351
Health and Physical Activity/Exercise Services................................................................. 351
Summary.................................................................................................................................. 352
Discussion..................................................................................................................................... 352
Conclusion....................................................................................................................................354
Acknowledgements..................................................................................................................... 355
References..................................................................................................................................... 355

285
286 Enhancing Healthcare and Rehabilitation

Introduction
Multiple sclerosis (MS) is a non-traumatic, chronic disease, which affects the brain, brain
stem, spinal cord, and optic nerves. Worldwide, the disease affects an estimated 2.5 million
people, and there is epidemiological evidence of a growing prevalence of the disease
(Benito-León 2011), especially among women (Sellner et al. 2011). MS is typically diagnosed
between the second and fourth decade of life. The pathogenesis of MS is unknown, but is
believed to be linked with multifactorial interactions between factors including: genetics
and epigenetics, infection including Epstein-Barr virus, nutrition and smoking, climate
and sunlight exposure, or other environmental influences (Hedström et al. 2016a, 2016b:
Rhead et al. 2016; Olsson et al. 2017). The factors leading to MS result in a loss of immune
homeostasis and the development of unregulated pathologic inflammatory responses
directly affecting the central nervous system (CNS). Accumulated damage leads to myelin
loss, axonal loss and gliosis, and progressive, often severe neurological dysfunction. The
disease is complicated by a dependent relationship between neuroinflammation and neu-
rodegeneration, and the autoimmune model of pathogenesis results in an immunotherapy
approach as the primary clinical management strategy (Baranowski et al. 1997). The pro-
gressive damage to the CNS, which eventually becomes unresponsive to immunotherapy,
is associated with increasing disability in MS and this underscores the need to emphasise
other management strategies to counteract the decline in CNS function.
There is growing evidence to suggest that exercise is a countermeasure to the declining
CNS function (Motl and Sandroff 2018) and more than two decades of evidence acknowl-
edging the benefits, safety, and feasibility of exercise in persons with MS (Kinnett-Hopkins
et al. 2017a). The most recent evidence of exercise being a countermeasure to CNS decline is
based on associations between physical fitness and physical activity and exercise training
affect in relation to cognitive decline (Motl and Sandroff 2018). There is growing rationale
that physical fitness and exercise training represent a behavioural approach for slowing,
preventing, or possibly reversing the CNS decline (Motl and Sandroff 2018). The benefits of
physical activity and exercise, which include improvements in fatigue, cognition, depres-
sion, mobility disability, cardiorespiratory fitness, muscular strength and endurance, bal-
ance and gait, and improved quality of life has led to physical activity being considered
one of the best therapeutic strategies for comprehensive MS care (Vollmer et al. 2012), and
guidelines have been developed for physical activity in persons with MS (Latimer-Cheung
et al. 2013a). The safety of physical activity is evident from a systematic review of exercise
training studies in MS, where it is established that exercise is associated with a slight
decrease in the risk of relapse, and that the risk of adverse events associated with exercise
training is comparable with that which is reported in healthy populations (Pilutti et al.
2014b). Thus, exercise seems feasible as a powerful clinical management strategy in MS as
it is: (1) a countermeasure to the declining CNS function associated with the disease, (2) a
countermeasure to the physical and cognitive symptoms, and (3) a safe strategy when used
appropriately.
An important 4th dimension to determining the feasibility of exercise as a clinical man-
agement strategy in MS is the acknowledgement of its use by the patient and public (Brett
et al. 2014). Such evidence will emerge from qualitative interaction with persons with MS
and other members of the MS community (e.g., healthcare providers). Quantitative studies
report that persons with MS engage in less physical activity than the general population
(Kinnett-Hopkins et al. 2017a), and this questions the feasibility of exercise as an effective
management strategy. Persons with MS cannot benefit from the potential CNS protection
Multiple Sclerosis 287

or symptom management offered by exercise if they are not engaging. There are a number
of reasons why this might be, for example:

1. Persons with MS are not aware of exercise as a management strategy for their
disease.
2. Persons with MS require assistance to access exercise.
3. Persons with MS require exercise that is appropriate for them.
4. Persons with MS may require information on exercise.

The MS community (e.g., healthcare professionals) may play a role in exercise promotion.
Qualitative inquiry might unlock the missing information for researchers to improve
access to and improve the content of exercise interventions to allow more persons with
MS to benefit from exercise. This further might help to establish if the aforementioned rea-
sons explain exercise behaviour in persons with MS. To date, the qualitative research on
exercise in MS has not been gathered and systematically reviewed. Such an endeavour is
timely considering the growing acceptance and methodological underpinnings of qualita-
tive review (Chenail 2011). This chapter offers a philosophical attempt to collectively com-
municate the known qualitative literature related to the topic of exercise in association with
MS. The contents will allow those less versed in qualitative methodology the opportunity
to incorporate the collective views and opinions of the MS community into research and
clinical recommendations. This is an important undertaking considering that rehabilitation
through management strategies such as exercise is considered a highly effective approach
for improving outcomes in persons with MS (Kraft 1999; Vollmer et al. 2012; Coote 2014).
Within this chapter, we will first discuss review studies and the important research
groups which have focussed the opinions of the MS community on the topic of physi-
cal activity and exercise. This will be followed by an in depth discussion of key areas of
qualitative inquiry from original research studies which have been undertaken in persons
with MS or those involved in the MS community. The chapter includes a discussion of
study quality limitations with the existing research and highlights approaches which can
be taken to incorporate past research results into future inquiry and clinical strategies.
We highlight that physical activity and exercise are often discussed in unison within the
literature, and we acknowledge that these are separate constructs (Box 18.1). Within this
review we will discuss both physical activity and exercise.

BOX 18.1 DEFINITIONS OF PHYSICAL

ACTIVITY, EXERCISE, AND FITNESS

Physical activity
Any bodily movement produced by contraction of skeletal muscles that results in a
substantial increase in energy expenditure over resting levels

Exercise
A subset of physical activity that is planned, structured, and repetitive with the
objective of improving or maintaining physical fitness
American College of Sports Medicine (2013)
288 Enhancing Healthcare and Rehabilitation

Method
The systematic review was undertaken following key steps from the literature (Walsh and
Downe 2005; Erwin et al. 2011; Learmonth and Motl 2016), and this allowed us to collate and
understand the various themes and topics gathered through qualitative research on topics
related to exercise in persons with MS. Three main steps were followed to ensure a sys-
tematic approach was taken to gathering, reviewing, and presenting the current research.
Step 1 included selection and appraisal of studies and adopting the quality assessment
criteria. Step 2 included gathering data and themes from the studies to allow comparison
and synthesis. Finally, in step 3, the studies were appraised, and the relationships between
and key finding within the studies were established.

Search Strategy
Four major research databases were searched without limit: PsycINFO, PubMed, CINAHL,
and Web of Science. The key terms searched involved ‘Multiple Sclerosis’ AND ‘Qualitative’
AND ‘physical activity OR exercise’. A manual search was conducted on the reference list
of the included studies and by citation tracking using Google Scholar.

Inclusion and Exclusion Criteria

Original research studies and relevant review studies were included if they were written
in English, examined qualitative inquiry with people with a diagnosis of MS or persons
involved with persons with MS (e.g., carers or healthcare professionals of persons with
MS), and examined physical activity or exercise. The original research studies had to be
primarily qualitative in nature or report qualitative results as part of a mixed-methods
design. If more than one study reported findings from the same research project then we
included the study that reported most prevalently on physical activity and/or exercise.
Review articles were included to provide a framework for which to base this chapter upon
and were included if they were written in English and examined qualitative inquiry on
persons with MS in relation to physical activity or exercise On identification of studies, the
inclusion/exclusion criteria were applied to the abstracts of the identified studies.

Quality Assessment
To standardise our qualitative review, and further allow for critical appraisal of the rel-
evant literature, we determined the quality of each study using the McMaster Critical
review form (Letts et al. 2007a), and associated guidelines (Letts et al. 2007b), for qualita-
tive research. The McMaster review form contains 25 items. Twenty-four items incorporate
a nominal scale (Yes or No/Not assessed). The items address study background (one item),
study design (three items), sampling (three items), data collection (six items), data analysis
(five items), trustworthiness (five items), and conclusions (one item). The scores from the
24 items are summed, and the overall score provides a quantifiable assessment of study
quality. The study design item provides descriptive information on the methodology and
was not included in the scoring criteria.
Original research studies were scored based on whether each category of the
McMaster Qualitative review form was met (Table 18.1). Scores of 0–24 were obtained
from summation of all items, with higher scores indicating higher methodological
Multiple Sclerosis 289

TABLE 18.1
Quality Assessment Scoring Criteria, adapted from McMaster Critical Review Form for Qualitative
Research
Criteria Scoring

Background
1 Was the study purpose stated clearly? Y/N
2 Was the relevant background literature reviewed? Y/N
Study Design
3a What was the design? Not scored
3b Was a theoretical perspective identified? Y/N
3c What method(s) were used? Not scored
Sampling
4a Was the process of purposeful sampling described? Y/N
4b Was sampling done until redundancy was reached? Y/N/NA
4c Was informed consent obtained? Y/N/NA
Data Collection
5a Was there clear and complete description of site? Y/N
5b Was there clear and complete description of the participants? Y/N
5c Was there clear and complete description of the researcher’s credentials? Y/N
5d Was there clear and complete description of the role of researcher and relationship with Y/N
participants?
5e Was there identification (bracketing) of assumptions of researcher? Y/N
5f Was procedural rigour used in data collection strategies? Y/N/NA
Data Analysis
6a Was data analysis inductive? Y/N/NA
6b Were findings consistent with and reflective of data? Y/N
6c Was the decision trail developed and the rules reported? Y/N/NA
6d The process of transforming data into themes/codes was described adequately? Y/N/NA
6e Did a meaningful picture of the phenomenon under study emerge? Y/N
Trustworthiness
7a Was triangulation reported for sources? Y/N
7b Was triangulation reported for methods? Y/N
7c Was triangulation reported for researchers? Y/N
7d Was triangulation reported for theories? Y/N
7e Was member checking used to verify findings? Y/N/NA
Conclusions
8a Were the conclusions appropriate given the study methods and results? Y/N
8b Do the findings contribute to theory development and future of practice/research? Y/N
TOTAL (1 point for each Y response)

Source: Letts, L. et al. Critical Review Form - Qualitative Studies (Version 2.0), McMaster University, Hamilton, Canada, 2007;
Guidelines for Critical Review Form: Qualitative Studies (Version 2.0), McMaster University, Hamilton, Canada, 2007.
Note: Y; yes, N; no, NA; not assessed.

quality (Thorpe et al. 2012). There is no current literature indicating what cut-off
scores are indicative of overall study quality (i.e., moderate quality or high quality), as
such, we rated studies with scores of 12 or less points to be of lower quality. A similar
method where higher scores indicate higher quality has been used in relevant past
work (Learmonth and Motl 2016). Original studies were assessed for quality by two
researchers (see Acknowledgements).
290 Enhancing Healthcare and Rehabilitation

Data Gathering and Analysis

A standardised form was used to extract data from the original research studies as follows:
authors, publication, year published and country of origin, study design, data collection
method (i.e., individual interview or focus group) participant characteristics (i.e., sex, age
(mean, SD, range) and race), clinical characteristics of participants (i.e., time since MS diag-
nosis (mean years, SD and range), MS type, disability level (outcome assessment used and
result), mobility aid usage (where more than one aid was reportedly used, the mobility aid
of higher dependency, i.e., wheelchair rather than cane, is reported) (these data were appli-
cable for persons with MS only), information on any associated intervention, theme area
(e.g., the wider MS community, opinions on exercise associated with an exercise intervention, and
moving when you have MS), and description of associated intervention.

Results
The search strategy was highly specific and yielded a total of 161 studies (Figure 18.1).
After removing seven duplicate studies, articles were read in full and, at this stage,
88 publications were removed, reasons for removal of studies included the following:

Records idenfied through Addional records idenfied through

database searching (n = 149) reference checking and reference lists (n = 12)

Original research
arcles removed.
Abstract only (n = 1)
Records screened a‰er duplicates Not PwMS (n = 24)
removed (n = 154) Unable to idenfy views
of PwMS (3)
Not physical acvity or
exercise (n = 13)
Not qualitave (46)
Arcles assessed for (n = 88)
eligibility
(n = 65 )
Review arcles
removed. Not focused
on persons with MS
(n = 3)
Review protocol (n = 1)
Discussion of research
group publicaons (n = 1)
Original research studies Review studies included
included in qualitave in discussion review
review (n = 3)
(n = 57)

FIGURE 18.1
Literature selection process (PRISMA flow diagram). PRISMA = Preferred Reporting Items for Systematic
Reviews and Meta-analyses. (From Moher, D. et al. PLoS Med, 151, 2009.)
Multiple Sclerosis 291

studies published as abstracts only, studies not including persons with MS, views of
persons with MS not being clear (e.g., when studies included views of participants with
a variety of difference healthcare conditions), studies not focused on physical activity or
exercise, studies not written in English, and studies not including qualitative methodol-
ogy (i.e., data were not collected using interviews or focus groups). There were 65 articles
of interest, and this comprised eight review articles that were of direct interest and 57
original research studies which were eligible for qualitative review.

Research Groups
It is notable that there have been key research groups around the world who have
brought us much information related to the thoughts and opinions of the MS com-
munity. Research from Europe led by Professor Susan Coote has explored the views
of Irish people who have MS about community exercise programmes and the design
of web-based exercise interventions (Toomey and Coote 2013; Clarke and Coote 2015;
Casey et al. 2016). The North America research led by Professor Robert Motl has
determined a variety of topics ranging from factors important in exercise engage-
ment, the relationship between relapse and exercise, the meaning of exercise, and the
role of healthcare providers in the promotion of exercise to Americans who have MS
(Dlugonski et al. 2012; Learmonth et al. 2015, 2017a, 2017b, 2018a, 2018b; Chiu et al.
2016; Kinnett-Hopkins et al. 2017a; Adamson et al. 2018). Elsewhere in North America,
research led by Professors Marcia Finlayson and Matthew Plow have researched topics
related to the relationships between carers and persons with MS regarding exercise,
the opinions of exercise computer games (e.g., exergaming), and leaflet-based exercise
interventions in Americans and Canadians with MS (Plow and Finlayson 2014; Plow
et al. 2014; Fakolade et al. 2018). However one of the first, and in many researchers opin-
ions most patient- and community-focused research groups, have produced research
in New Zealand, the group originally led by Professor Leigh Hale and Dr. Cath Smith
have inspired many other qualitative researchers. The research undertaken in New
Zealand has gathered important data on the influence of fatigue in exercise partici-
pation, the delivery of long term community physical activity intervention, and the
importance of motivation towards exercise (Smith et al. 2009, 2011, 2013a, 2013b, 2015;
Mulligan et al. 2013; Hall-McMaster et al. 2016a, 2016b).

Review Articles
Eight review articles have been published on the broader topic of physical activity
and/or exercise in persons with MS and which have included articles of qualitative
inquiry (Hale et al. 2012; Christensen et al. 2016; Dennett et al. 2016; Learmonth and Motl
2016; Newitt et al. 2016; Ploughman 2017; Williams et al. 2017). However, only three review
articles focus specifically on persons with MS (Christensen et al. 2016; Learmonth and
Motl 2016; Ploughman 2017). A summary of the aim, the original studies included in the
review, and outcome of these review articles are provided in Table 18.2. The review stud-
ies have been undertaken since 2016, and this reflects the overall increase in qualitative
research on the topic of physical activity in MS. All three reviews aim to identify the gen-
eral topics surrounding participation in physical activity and exercise in persons with
MS. In two studies (Christensen et al. 2015; Learmonth and Motl 2016), the authors took
a critical review of the literature, and this critical review allowed the authors to appraise
the quality of the literature overall and between original studies. In the third review
TABLE 18.2
292

Aim, Included Articles, Summary of Finding, and Conclusions from Relevant Review Articles
Implications for Rehabilitation/
Author (Date) Aim Included Articles Themes Conclusions

Christensen et al. To identify factors 9 (Borkoles et al. 2008; Kasser Social Support Social support, professional
(2016) influencing the intention to 2009; Plow et al. 2009; Kayes Professional support support, and outcome
exercise and the execution et al. 2011; Smith et al. 2011, • Exercise-supporting expectations are potential
of exercise among persons 2013b; Dlugonski et al. 2012; strategies facilitators and barriers for the
with multiple sclerosis Learmonth et al. 2013; • Exercise program intention to exercise and the
Mulligan et al. 2013) • Exercise setting execution of exercise among
• Professional relationships PwMS.
Outcome Expectations Health professionals specialising
• Changes in symptoms in MS rehabilitation can influence
• General well-being the intention and the execution of
• Previous experiences physical exercise among PwMS
when there exists a personal and
supportive patient-professional
relationship.
Outcome expectations may impact
the motivational and volitional
phases of physical exercise
Learmonth and Motl To evidence of the perceived 19 (Dodd et al. 2006; Borkoles Consequences of physical Physical activity and exercise
(2016) determinants and et al. 2008; Elsworth et al. activity and exercise behaviour in people with MS is
consequences of physical 2009; Kasser 2009; Plow et al. participation subject to a number of modifiable
activity and exercise based 2009; Smith et al. 2009, 2011, • Beneficial consequence determinants.
on qualitative research in 2013b; Schneider and Young • Adverse consequence Healthcare professionals working
multiple sclerosis 2010; Kayes et al. 2011; Perceived determinants of to promote physical activity and
Aubrey and Demain 2012; physical activity and exercise exercise in those with MS should
Brown et al. 2012; Dlugonski participation choose to endorse the positive
et al. 2012; Giacobbi et al. • Barriers benefits of participation.
2012; Learmonth et al. 2013; • Facilitators Future physical activity
Normann et al. 2013; interventions for those with MS
VanRuymbeke and Schneider may be improved by
2013; Plow and Finlayson incorporating behavioural
2014; van der Linden et al. management strategies.
2014)
(Continued)
Enhancing Healthcare and Rehabilitation
TABLE 18.2 (Continued)
Multiple Sclerosis

Aim, Included Articles, Summary of Finding, and Conclusions from Relevant Review Articles
Implications for Rehabilitation/
Author (Date) Aim Included Articles Themes Conclusions

Ploughman (2017) To consolidate the evidence 9 (Borkoles et al. 2008; Kayes Barriers In order to increase levels of
examining the barriers to et al. 2011; Brown et al. 2012; • MS-related impairment physical activity among people
physical activity among Dlugonski et al. 2012; Plow and disability with MS in the long-term,
people with MS, describe et al. 2014; Learmonth et al. • Attitudes and outlook physical therapists’ reach must
innovative methods to 2015; Hall-McMaster et al. • Fatigue extend beyond the patient-
overcome barriers, whilst 2016b; Hundza et al. 2016; • Knowledge/perceived provider relationship as they take
discussing the physical Ploughman 2017) benefits of exercise on the roles of coach and
therapist’s role as the Note the 9 included articles • Logistical factors: finances, community liaison.
physical activity promotion were discussed by the authors support, and accessibility Physical therapists, other health
specialist alongside 12 quantitative team members, and volunteers
studies are more likely to be successful in
breaking the barriers to physical
activity in MS by working
together.
Physical therapists employing
tailored and combined
approaches using tools
(education, motivational
interviewing, exercise practice,
and problem-solving) will
address a wider range of barriers
concurrently.
293
294 Enhancing Healthcare and Rehabilitation

(Ploughman 2017), the authors included both quantitative and qualitative research and no
critical appraisal was undertaken.
Learmonth and Motl (2016) aimed to identify the perceived determinants and consequences
of physical activity and exercise, and through inclusion of 19 original studies they identified
beneficial consequences, adverse consequences, barriers, and facilitators. Ploughman (2017) aimed
to examine the barriers to physical activity and methods to overcome barriers, whilst Christensen
et al. (2016) aimed to identify factors influencing the intention to exercise.
In terms of barriers to physical activity and exercise, Learmonth and Motl (2016)
categorised barriers based upon the environmental factors: the environment and social
influences, and personal factors: health condition and cognitive and behavioural areas
(Table 18.3). They identified that access to facilities, advice from healthcare professionals,
fatigue, and fear and apprehension were some of the most important barriers. Ploughman
(2017) categorised barriers from the evidence as related to: impairment/disability, attitude/
outlook, fatigue, and knowledge/perceived benefits and established that MS-related
impairment and disability and attitude and outlook seemed to be the more common
barriers perceived by persons with MS. In terms of facilitators to physical activity and
exercise, Learmonth and Motl (2016) categorised facilitators upon the same factors as for
barriers (Table 18.3). They identified that the type of exercise modality, access to physical
activity services, social influences, exercise appropriateness for physical capabilities, and
feeling accomplished were some of the most important factors. Christensen et al. (2016)
identified factors related to the intention to and execution of exercise as: professional
support, social support, and outcome expectations.
Key messages from these reviews tell us of the important role healthcare professionals
have in physical activity and exercise among persons with MS. For example health
professionals specialising in MS rehabilitation can influence the intention and the execution
of physical exercise among persons with MS (Christensen et al. 2016). Recommendations
on how healthcare professionals can meet this end include: endorsing the positive benefits
of exercise participation (Learmonth and Motl 2016), take on the role of coach and community
liaison, and work together with other healthcare professionals (Ploughman 2017). The three
reviews further noted the importance of increasing motivation towards exercise and
provided some recommendations on strategies to achieve motivation. For example, the
promotion of outcome expectations (Christensen et al. 2016), incorporation of behavioural
management strategies (Learmonth and Motl 2016), and education and motivational
interviewing (Ploughman 2017) might all result in increased participation. Finally, the
reviews established that participation in physical activity and exercise is subject to a number
of modifiable determinants (Learmonth and Motl 2016), and that a tailored and combined
approach (Ploughman 2017) may be needed to increase participation.

Original Papers
The views of 57 different groups were included in the review of original research groups.
Studies were conducted globally, and all were published in peer-reviewed rehabilitation
journals between 2006 and 2018. We categorised the different studies based on three themes
to allow for discussion and comparison. These areas were: (1) the wider MS community,
and this included views and opinions from individuals involved in the MS community, but
who did not have MS (i.e., healthcare providers and carers); (2) opinions on exercise (from
persons with MS) associated with an exercise intervention; and (3) keeping moving when
you have MS, and this involved opinions on persons with MS on the realities of exercise
when you have MS. Gathering opinions from the entire MS community represents an
TABLE 18.3
Determinants of Physical Activity and Exercise Behaviour in MS
Facilitators
Multiple Sclerosis

Environmental Personal
Environment Social Influences Health Condition Cognitive and Behavioural

Minimal or no disabled facilities Social exclusion (Borkoles et al. 2008; Fatigue (Dodd et al. 2006; Borkoles Fear and apprehension (Borkoles et al.
(Borkoles et al. 2008; Elsworth et al. Kasser 2009; Smith et al. 2009; et al. 2008; Smith et al. 2009, 2011; 2008; Kayes et al. 2011; Smith et al. 2011,
2009; Plow et al. 2009; Brown et al. Aubrey and Demain 2012; Kayes et al. 2011; Brown et al. 2012; 2013a; Brown et al. 2012; Learmonth
2012; VanRuymbeke and Schneider Learmonth et al. 2013; Plow and Dlugonski et al. 2012; van der et al. 2013; Plow and Finlayson 2014)
2013; van der Linden et al. 2014) Finlayson 2014; van der Linden Linden et al. 2014) Poor self-management (Kasser 2009;
Inappropriate exercise for level of et al. 2014) Symptom fluctuations (Kasser 2009; Smith et al. 2009, 2011; Schneider and
physical ability (Aubrey and Demain Minimal or conflicting advice on Kayes et al. 2011; Brown et al. 2012; Young 2010; Plow and Finlayson 2014)
2012; Normann et al. 2013; Plow and physical activity and exercise from VanRuymbeke and Schneider 2013; Loss of self-control (Borkoles et al. 2008;
Finlayson 2014) healthcare professionals (Smith van der Linden et al. 2014) Smith et al. 2009, 2011; Brown et al.
Lack of disabled parking (Kayes et al. et al. 2009, 2011, 2013b; Schneider Lack of personal knowledge about 2012)
2011; Brown et al. 2012; Learmonth and Young 2010; Kayes et al. 2011; physical activity and exercise for Frustrations with limitations (Borkoles
et al. 2013) Aubrey and Demain 2012; Brown those with MS (Plow et al. 2009; et al. 2008; Kayes et al. 2011; Smith et al.
Public transport inflexibility (Brown et al. 2012; Learmonth et al. 2013) Aubrey and Demain 2012; Smith 2011)
et al. 2012; van der Linden et al. 2014) Limited finances (Borkoles et al. et al. 2013a) Time-management (Plow et al. 2009;
Inappropriate information at diagnosis 2008; Brown et al. 2012; van der Pain (Dodd et al. 2006; Elsworth Dlugonski et al. 2012; Plow and
(Brown et al. 2012; Plow and Linden et al. 2014) et al. 2009; Dlugonski et al. 2012) Finlayson 2014)
Finlayson 2014) Dependence on others (Brown et al. Symptom progression (Kasser 2009) Low confidence (Plow et al. 2009; Smith
Lack of physical activity and exercise 2012; Giacobbi et al. 2012) Medication (Giacobbi et al. 2012) et al. 2011; Learmonth et al. 2013)
opportunities (Learmonth et al. 2013; Family distractions (Plow et al. 2009; MS-related surgery (Giacobbi et al. Apathy towards home or independent
van der Linden et al. 2014) Plow and Finlayson 2014) 2012) exercise (Aubrey and Demain 2012;
Inappropriate temperature and Social stress (Smith et al. 2013b) Non-MS-related musculoskeletal Giacobbi et al. 2012; van der Linden
climate Vague exercise explanation from problems (Dodd et al. 2006) et al. 2014)
Need for a personal programme exercise leaders (Dodd et al. 2006) Forgetting to exercise (Dodd et al. Low illness acceptance (Plow et al. 2009;
(Smith et al. 2011) Negative attitudes from others with 2006) Brown et al. 2012)
one on one support MS (Aubrey and Demain 2012) Programme interruptions (Giacobbi et al.
2012; Plow and Finlayson 2014)
(Continued)
295
TABLE 18.3 (Continued)
296

Determinants of Physical Activity and Exercise Behaviour in MS

Facilitators
Environmental Personal
Environment Social Influences Health Condition Cognitive and Behavioural

Depression (Borkoles et al. 2008; Kayes

et al. 2011)
Reliance on mobility aid and home
adaptations (Kayes et al. 2011; van der
Linden et al. 2014)
Derision towards exercise (Kasser 2009)
Uncommitted (Kasser 2009)
Facilitators
Environmental Personal
Environment Social Influences Health Condition Cognitive and Behavioural
Type of exercise modality (Smith et al. MS role models and peer support Appropriate exercise for physical Accomplishment (Dodd et al. 2006;
2009, 2011, 2013a; Brown et al. 2012; social acceptance (Dodd et al. 2006; capabilities (Smith et al. 2009, 2011, Elsworth et al. 2009; Kasser 2009; Plow
Learmonth et al. 2013; Plow and Borkoles et al. 2008; Elsworth et al. 2013a; Brown et al. 2012; Dlugonski et al. 2009; Schneider and Young, 2010;
Finlayson 2014; van der Linden et al. 2009; Kasser 2009; Smith et al. 2011, et al. 2012; Learmonth et al. 2013; Kayes et al. 2011; Smith et al. 2011, 2013a;
2014) 2013a; Aubrey and Demain 2012; Plow and Finlayson 2014; van der Brown et al. 2012; Dlugonski et al. 2012;
Community programme or venue Brown et al. 2012; Dlugonski et al. Linden et al. 2014) Learmonth et al. 2013; Plow and Finlayson
(Elsworth et al. 2009; Kasser 2009; 2012; Learmonth et al. 2013; Rest periods allowing for Fatigue 2014; van der Linden et al. 2014)
Learmonth et al. 2013; Smith et al. VanRuymbeke and Schneider 2013; (Smith et al. 2009, 2011; Schneider Self-management (Kasser 2009; Plow
2013a; Plow and Finlayson 2014) van der Linden et al. 2014) and Young 2010; Kayes et al. 2011; et al. 2009; Smith et al. 2009, 2011;
Increased frequency of classes (Dodd Coaches/leaders who are Dlugonski et al. 2012; Normann Schneider and Young 2010; Aubrey and
et al. 2006; Borkoles et al. 2008; Kasser knowledgeable in MS (Dodd et al. et al. 2013; Plow and Finlayson Demain 2012; Dlugonski et al. 2012;
2009; Aubrey and Demain 2012; Van 2006; Smith et al. 2009; Kayes et al. 2014) Learmonth et al. 2013)
Ruymbeke and Schneider 2013; van 2011; Aubrey and Demain 2012; Fatigue management awareness Self-choice in physical activity and exercise
der Linden et al. 2014) Learmonth et al. 2013; Normann (Smith et al. 2009; Kayes et al. 2011) (Dodd et al. 2006; Kasser 2009; Plow et al.
Accessible disabled friendly et al. 2013; Smith et al. 2013a; 2009; Smith et al. 2011, 2013b; Aubrey and
environments (Dodd et al. 2006; VanRuymbeke and Schneider 2013; Demain 2012; Dlugonski et al. 2012;
Brown et al. 2012; Learmonth et al. van der Linden et al. 2014) Learmonth et al. 2013; Plow and Finlayson
2013; Smith et al. 2013a; Coaches/leaders who are friendly 2014; van der Linden et al. 2014)
VanRuymbeke and Schneider 2013) and motivating (Dodd et al. 2006;
Enhancing Healthcare and Rehabilitation

(Continued)
TABLE 18.3 (Continued)
Determinants of Physical Activity and Exercise Behaviour in MS
Facilitators
Environmental Personal
Environment Social Influences Health Condition Cognitive and Behavioural
Multiple Sclerosis

Appropriate temperature (Smith et al. Plow et al. 2009; Smith et al. 2009, Awareness of improvement (Plow et al.
2011; Brown et al. 2012; Plow and 2013a; Brown et al. 2012; 2009; Schneider and Young 2010; Kayes
Finlayson 2014) VanRuymbeke and Schneider 2013; et al. 2011; Smith et al. 2011; Dlugonski
Verbal, written and visual instruction van der Linden et al. 2014) et al. 2012; VanRuymbeke and Schneider
(Smith et al. 2009, 2013a; Normann Coaches/leaders who are 2013; van der Linden et al. 2014)
et al. 2013) challenging, progressive and Learning coping strategies (Borkoles
Good public transportation provide feedback (Learmonth et al. et al. 2008; Plow et al. 2009; Smith et al.
availability (Kayes et al. 2011; Brown 2013; Smith et al. 2013a; Plow and 2009, 2011, 2013b; Brown et al. 2012)
et al. 2012) Finlayson 2014) Previous exercise experiences (Borkoles
Time-flexibility (Dodd et al. 2006; Ongoing healthcare professional et al. 2008; Kayes et al. 2011; Smith et al.
Dlugonski et al. 2012) input (Dodd et al. 2006; Elsworth 2011)
Personal exercise programme (Aubrey et al. 2009; Plow et al. 2009; Aubrey Feeling safe (Smith et al. 2011; Brown
and Demain, 2012; Normann et al. and Demain 2012; Giacobbi et al. et al. 2012; VanRuymbeke and Schneider
2013) 2012; Normann et al. 2013; Smith 2013)
Quiet exercise areas (Smith et al. 2011) et al. 2013a) Time-management (Kasser, 2009;
Public awareness of MS (Brown et al. Time with family (Borkoles et al. Schneider and Young 2010; Kayes et al.
2012) 2008; Schneider and Young 2010; 2011)
Smith et al. 2013a; Plow and Activity diary (Plow et al. 2009; Smith
Finlayson 2014) et al. 2013b)
Social accountability (Kasser 2009; Self-determination (Dlugonski et al. 2012;
Smith et al. 2011; Plow and van der Linden et al. 2014)
Finlayson 2014) Commitment (Plow et al. 2009; van der
Assistance from others (Elsworth Linden et al. 2014)
et al. 2009; Normann et al. 2013) Low anxiety (Aubrey and Demain 2012)
Email/phone communication
(Schneider and Young 2010; Smith
et al. 2011)
Early advise (at time of diagnosis)
from healthcare professionals
(Normann et al. 2013)
Affordability (Dodd et al. 2006)
297

Source: Recreated from Learmonth, Y.C., and Motl, R.W., Disabil. Rehabil., 38, 1227–1242, 2016.
298 Enhancing Healthcare and Rehabilitation

example of consumer-based participatory research, as it enables the research community

to learn from the consumer of exercise interventions and the role of exercise within life of
persons with MS.

Theme 1: The Wider MS Community

‘It is not enough to say, “you need to exercise”, you have to help the client create a
plan that takes into account the specific, contextual issues operating in the context of a
person’s life’, study participant, occupational therapist (Learmonth et al. 2018a).

We must engage with the wider MS community of patients, carers, and healthcare profes-
sionals to identify mechanisms to improve exercise participation in persons with MS, and
researchers have begun to engage healthcare professionals and carers in conversation sur-
rounding exercise for persons with MS. Studies have been conducted between 2013 and
2017. In six of these studies (Toomey and Coote 2013; Forsberg et al. 2015; Horton et al. 2015;
Fakolade et al. 2018; Giunti et al. 2018; Held Bradford et al. 2018), views of persons with MS
were also gathered, and, where applicable, these will be discussed in subsequent sections
of this chapter.
From the wider MS community, the views of at least four fitness facility managers
(Anderson et al. 2017), 34 physiotherapists (Smith et al. 2013a; Toomey and Coote 2013;
Forsberg et al. 2015; Giunti et al. 2018; Held Bradford et al. 2018; Learmonth et al. 2018a),
one sports trainer (Giunti et al. 2018), 15 occupational therapists (Smith et al. 2013a;
Giunti et al. 2018; Learmonth et al. 2018a), 2 ‘exercise buddies’ who were paid carers
trained by physiotherapists (Toomey and Coote 2013), and 16 neurologists have been
gathered. Views of 27 family carers (Horton et al. 2015; Fakolade et al. 2018) have also
been gathered.
All of the studies were primarily qualitative in method and gathered data via interviews
or focus groups. Table 18.4 provides study information, participant information, quality
score, main thematic findings, and a summary of the authors main conclusions or relevant
points.
To recruit participants, the researchers used either purposive (Anderson et al. 2017;
Giunti et al. 2018), purposeful (Fakolade et al. 2018; Held Bradford et al. 2018; Learmonth
et al. 2018a), or convenience (Smith et al. 2013a; Toomey and Coote 2013; Forsberg et al.
2015; Horton et al. 2015) sampling. Data were collected via one to one in-person inter-
views (Toomey and Coote 2013; Horton et al. 2015; Anderson et al. 2017), telephone
interviews (Held Bradford et al. 2018), focus groups (Fakolade et al. 2018; Giunti et al.
2018), or a combination of interviews and focus groups (Smith et al. 2013a; Forsberg
et al. 2015; Learmonth et al. 2018a). Four of the studies gathered further data via sur-
veys in addition to the interviews or focus groups (Anderson et al. 2017; Fakolade et al.
2018; Giunti et al. 2018; Held Bradford et al. 2018). To analyse the data, analysis was
described as thematic analysis in most of the studies (Smith et al. 2013a; Toomey and
Coote 2013; Anderson et al. 2017; Giunti et al. 2018; Learmonth et al. 2018a), three
research groups described the use of content-constant comparison (Forsberg et al. 2015;
Fakolade et al. 2018; Held Bradford et al. 2018), and one used hierarchical content analysis
(Horton et al. 2015).
TABLE 18.4
Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Multiple Sclerosis

Analytical Diagnosed (SD)/

Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion

Adamson To understand how Design; N: 15 Diag: unreported None 18 Moving with PA has a paradoxical role PA should be promoted
et al. persons with MS Qualitative Sex: 14 F, 1 M Type: unreported MS in MS relapse carefully as it occupies
(2018) describe the roles data col: Age: 48.4 (±13.7) Disability: EDSS 4.7 PA has a role in guilt and many important and
USA of PA and exercise interviews 30–70 (±1.4) empowerment sometimes conflicting roles
as part of daily life Analysis: Race; 10 white, 1 Defiance of disability in the life of an individual
with MS, relapses, interpretative Latina, 2 (disability preventer, with MS.
and disability pheno- American disability eraser)
identity. menological Indian, 2 black
analysis
Sampling:
purposeful
Anderson To identify potential Design: Mixed Fitness facility NA None 14 Wider MS Exercise for people with Ensuring the provision of
et al. barriers to exercise methods managers community neurological conditions specially trained staff to
(2017) provision by the Data col: Surveys N: 4 interviews Disabled vs able-bodied/ support pwND to exercise
UK fitness industry and interviews Age: unreported similarities in gyms may be the main
for people with Analysis: Sex: unreported Disabled vs able-bodied/ barrier to provision for this
neurological thematic content Race: unreported differences population. Investigation
disease (pwND). analysis Equality into the standard training
Theory: none Benefits of exercise for of fitness professionals
Sampling people with neurological combining the expertise of
method: conditions neurological
purposeful Gym accessibility for physiotherapists with that
people with neurological of fitness professionals to
conditions meet the needs of for
Barriers to exercise for people with neurological
people with neurological conditions would be
conditions advantageous
Encouraging people with
neurological conditions
299

to exercise in a gym (Continued)

TABLE 18.4 (Continued)
300

Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion

Role of health sector

Deterrents to providing
for pwND
Conscious vs
unconscious
discrimination
Not being actively
inclusive vs being
inclusive
Aubrey and Establish how a Design: N: 25, Diag.: 17.4 (±12.5), Ongoing 16 Intervention Camaraderie: taking Exercise providers need to
Demain community-based Qualitative Sex: 14 F Type: unreported fortnightly opinion: action; understanding have an understanding of
(2012) exercise group is Data col: Focus Age: 62.2 (±14.8), Disability: MS group Moving MS and the role of MS to ensure appropriate
UK perceived to group 32–85 unreported exercise class with MS exercise; exercising exercise prescription.
influence MS Analysis: Race: unreported Mob. device; outside the Exercise is an opportunity
self-management. Thematic 16 WC, 1 Wa, environment. for PwMS to increase
analysis 6 Ca, 2 None. self- efficacy and reducing
Theory: None feelings of helplessness
Sampling: associated with the nature
Convenience of MS.
The group dynamics and
the support of peers foster
a positive attitude towards
MS and enable people to
learn management
strategies from each other.
However, the group format
makes it difficult to meet
the variety of participant
exercise needs.
Enhancing Healthcare and Rehabilitation

(Continued)
TABLE 18.4 (Continued)
Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
Multiple Sclerosis

of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion

Borkoles Examine the lived Design: N: 7 Diag.: 16.3 (±9.1), None 14 Moving with Functional limitations to The wider exercise
et al. experiences of Qualitative Sex: 4 F Type: unknown, MS exercise; the effect of experience narratives were
(2008) people diagnosed Data col: Face Age: 47.1 (±19.1), Disability (EDSS): previous exercise related to concerns about
UK with MS in relation interview 34–65 all 4–6, experience; views of safety, dependability on
to exercise. Analysis: Race: unreported Mob. Dev: others; environmental others to overcome the
Interpretative unreported and social barriers to challenges, and potential
phenomenology exercise environmental hazards.
Theory: None The loss of spontaneous
Sampling: opportunities to exercise
Purposive because of these actual and
perceived barriers was key
to this population. This
research highlighted the
need to rethink the health
and social service
arrangements in relation to
exercise provision for
individuals with MS.
(Continued)
301
TABLE 18.4 (Continued)
302

Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion
Brown et al. Identify factors that Design: N: 8 Diag.: 16.9 (±10.6), None 12 Moving with The benefits of AF People with MS encounter
(2012) facilitate or impede Qualitative Sex: 5 F Type: 2 RR, 6 PP MS encourage various barriers to
Canada participation in Data col: Focus Age: 42–66 Disability: continued participation; participation in AF
aquatic fitness (AF) group Race; unreported unreported The environment must programs, including lack
programs by Analysis: Mob. Device: be accessible and of transportation, need for
individuals with Thematic unreported tailored to the needs of one-on-one support,
MS content analysis those with MS; The inaccessible pool
Theory: Person ability to get to and from environments, and fitness
Environment the pool influences professionals’ lack of
educational participation; Pool staff knowledge about MS.
Model (Strong attitudes and knowledge As fear can prevent MS
et al. 1999) are important for patients from initiating
Sampling: facilitating AF participation in AF
convenience & participation; Lack of programs, support from
snowball one-on-one support may clinicians is needed to help
restrict participation in patients begin and continue
AF programs. these programs.
Casey et al. To investigate what Design: N: 33 Diag: unreported None 15 Intervention Content – important The data suggest that
(2016) PwMS want from a Qualitative Age: 30–79 Type: unreported opinion information to include; PwMS want a variety of
Ireland web-based Data col: Focus Sex: 20 F, 13 M Disability: PDDS Presentation – varying information from a variety
resource that groups & Race: unreported 3.09 (2.04) 0–7 format, different of sources and that this
encourages interviews Mob. device: abilities; information is to be both
physical activity Analysis: Wheelchair 4, cane Interactivity – build a stratified and interactive.
Thematic 9, unknown 7, sense of community; These results will be used
analysis none 13 Reach the audience – let to inform the development
Theory: None people know. of the ‘Activity Matters’
Sampling: website which will aim to
Convenience enable PwMS to become
more physically active.
Enhancing Healthcare and Rehabilitation

(Continued)
TABLE 18.4 (Continued)
Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Multiple Sclerosis

Analytical Diagnosed (SD)/

Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion
Chard To identify the Design: N: 45 Diag: 16.3 (9.0) Attendance at 13 Moving with Initiating a program; Providers could play a
(2017) individual and Qualitative Sex: 35 F, 10 M Type: 30 RR, 15 aquatic MS: Information sources; Role stronger role in
US social experiences Data col: Age: 55.0 (9.4) unreported exercise Intervention of exercise history; emphasising the feasibility
underlying the Telephone Race: 40 Disability: opinion Class fit and a sense of and benefits of aquatic
initiation and interview non-Hispanic unreported belonging. programs. In addition,
satisfaction with Analysis: white Mob. device: persons with MS should
aquatic exercise Thematic unreported be encouraged to try local
among persons analysis MS and more generalised
with MS. Theory: None aquatic programs in order
Sampling: to identify a program
Convenience matching their social and
physical goals
Chiu et al. To identify what are Design: N: 18 Diag: 7.8 (5.6) None 19 Moving with Acceptance and control Example key findings:
(2016) psychosocial qualitative Sex: 14 F 4 M Type: 17 PP, 1 SP MS of MS; benefits of Participants who showed
US factors which Data col: Focus Age: 27–61 Disability: physical activity; acceptance of MS and
initiate and groups & Race; African unreported self-defined enjoyable recognised immediate and
maintain physical interviews Americans Mob. Device: physical activity; long-term effects of
activity over time Analysis: unreported autonomous engaging in self-defined
among African semantic coding motivation; social enjoyable PA may have
Americans with analysis support to engage in more motivation to engage
MS. Theory: HAPA physical activity; in PA. Interventions that
Sampling: physical activity continue to develop these
purposeful self-efficacy; self- psychosocial adjustment of
monitoring of physical PA participation, along with
activity level and self-monitoring of PA and its
changes; resilience effects of daily functioning,
coping could enhance adherence to
physical activity,
(Continued)
303
 304
TABLE 18.4 (Continued)
Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion
social support can
positively affect African
Americans with MS to
engage in PA; interventions
must incorporate friends,
family, and healthcare
professionals who are
physically active or have
related PA knowledge for
MS disease strategies.
Strategies to increase
positive coping and
resilience will help
individuals resume PA
after relapses and improve
perseverance to engage
in PA.
Clarke and To explore the Design: N:14 pwMS Diag: 10.3 (10.9) Community- 16 Intervention Psychological benefits, The qualitative analysis
Coote perceptions of qualitative Sex: unreported Type: 11 RR, 3 SP based group opinion: physical benefits, and supports the findings of
(2015) people with Data col: focus Age: 53.9 (13.0) Disability: < = 5.5 exercise Moving knowledge gained the main trial confirming
Ireland multiple sclerosis groups Race: unreported Mob. Device: group with MS positive effects of
of a community- Analysis: 14 cane community exercise
based, group thematic interventions by reducing
exercise analysis the impact of MS and
programme. Theory: none fatigue and improving
Sampling: participation.
convenience
(Continued)
Enhancing Healthcare and Rehabilitation
TABLE 18.4 (Continued)
Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Multiple Sclerosis

Design/Data
Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion

Crank et al. To undertake a Design: N: 33 Diag: FG Personally 14 Intervention The transition to Perceptions of improved
(2017) qualitative qualitative Sex: 26 F, 7 M participants: 8.8 tailored opinion: inactivity; lack of posture, ability to
UK investigation of Data col: focus Age: 47.6 (7.9) (7.0), Interview supervised Moving with knowledge and overcome everyday
exercise groups and Race: unreported participants: 9.7 and MS confidence; positive difficulties, acute mood
perceptions and interviews (3.5) self-directed exercise experiences; enhancements during and
experiences in Analysis: Type: unreported exercise perspectives on exercise after exercise, and
PwMS before, framework Disability: FG program adherence increased opportunities for
during, and after analysis participants: 3.8 social interaction were
participation in a Theory: none (1.0–6.0), among the reported
personally tailored Sampling: Interview benefits of exercise
program designed purposive participants: 3.0 participation. Despite the
to promote convenience (1.5–6.5) provision of a personally
long-term Mob. Device: tailored exercise plan and
maintenance of unreported use of cognitive
self-directed behavioural strategies,
exercise self-directed exercise
continued to present
challenges to PwMS, and
the importance of seeking
cost-effective ways to
maintain motivational
support was implicit in
participant responses.
(Continued)
305
 306

TABLE 18.4 (Continued)

Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion

Dixon- To describe the Design: mixed N: 8 in FG Diag: 8.4 (7.4) Health 17 Intervention Outcome Evaluation: Focus group data provided
Ibarra development, methods Sex: 6 F 2 M Type: 7 RR, 1 SP Education opinion: Experiences with valuable feedback for
et al. implementation, Data col: focus Age: 56 (10.8) Disability: programme Moving physical activity and future iterations of the
(2017) and evaluation of groups Race: unreported unreported (participant with MS SCT during the program including
US a physical activity Analysis: content Mob. Device: own choice of program; Process and critiques on the delivery,
programme. analysis 2 walker, 3 cane, physical resource feasibility dose content, and group
Theory: SCT 1 wheelchair, activity received- satisfaction: support provided.
Sampling: 1 scooter, 3 no separate from General program Outcome evaluation
convenience device this experience; Context: showed increases in
intervention) Barriers to program self-efficacy (survey),
participation; Dose improvements in
received-exposure: theoretical constructs
Educational tools (focus groups), and
increased physical activity
(focus groups). Results
show that health
promotion programs for
persons with MS can
improve physical activity
and related constructs.
(Continued)
Enhancing Healthcare and Rehabilitation
TABLE 18.4 (Continued)
Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Multiple Sclerosis

Design/Data
Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion

Dlugonski To better Design: N: 11 Diag.: unreported, None 18 Moving with Meaning of physical Researchers and clinicians
et al. understand the Qualitative Sex: 11 F Type: unreported MS activity (subthemes: working to promote
(2012) adoption and Data col: Face Age: 42.9 (±10.2), Disability (PDDS): Being ‘normal’; physical activity among
USA maintenance of interview 29–58 4 Normal, 4 Mild, Savouring current women with MS might
physical activity Analysis: Race: unreported 3 Moderate, health/level of consider teaching skills
from the inductive Mob. Device: 11 Functioning); Motives related to prioritising
perspective of coding none for physical activity physical activity, assisting
women with MS. Theory: SCT (subthemes: ‘Feel in the development of
Sampling area: Good’; Enjoyment of the social support networks,
purposeful activity; Sense of and encouraging
accomplishment; participants to explore
Weight control; their personal meanings
Maintenance of physical for physical activity.
function); Strategies for
engaging in physical
activity (subthemes:
Make physical activity a
priority; Create a
flexible routine;
Management of
disease-specific barriers;
Build a social support
network)
(Continued)
307
 308

TABLE 18.4 (Continued)

Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion

Dodd et al. Explore the Design: N: 9, Diag.: 6 (±4.12), 10 week 15 Intervention Positive outcomes The results of this study
(2006) perceptions of Qualitative Sex: 7 F, Type: unreported, group-based opinion: physical; Positive suggest that progressive
Australia adults with Data col: Face Age: 45.6 (±13.4), Disability progressive Moving outcomes psychological; resistance strength training
multiple sclerosis interview 35–61 (MSIS-29): resistance with MS Positive outcomes is a feasible fitness option
about the positive Analysis: Race: 7 Caucasian psychological training social; Extrinsic factors for some people with
and negative Thematic mean = 34.9 important for multiple sclerosis. Factors
effects of a analysis (±17.3), physical programme completion; perceived to be important
progressive Theory: None mean = 25.3 (±9.9) Intrinsic factors for programme completion
resistance Sampling: Mob. Device: 9 important for suggest that choosing
strengthening Convenience none programme completion encouraging leaders with
programme. knowledge of exercise, and
exercising in a group may
contribute to programme
success.

Elsworth Determine the Design: N: 7 Diag.: unreported, None 11 Moving with Opinions of physical Individuals with
et al. opinions of pwND Qualitative Sex: unreported Type: unreported, MS activity; barriers to neurological conditions
(2009) on factors Data col: Focus Age: unreported Disability: physical activity; actors wish to participate in a
UK facilitating their group Race: unreported unreported, Mob. that would encourage range of activities that they
physical activity Analysis: device unreported increased physical enjoy in a community
participation. Categorical activity involvement setting, and prefer to
content analysis exercise with the support
Theory: of health and fitness
Implementation professionals with
Sampling: expertise relevant to their
Purposeful condition.
(Continued)
Enhancing Healthcare and Rehabilitation
TABLE 18.4 (Continued)
Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Multiple Sclerosis

Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion

A general preference to
exercising in groups of
individuals with similar
disabilities, rather than
with able-bodied
individuals, was evident.
Emotional issues such as
embarrassment and
informational issues
relating to knowledge of
professionals were
highlighted as particular
concerns that may act as
barriers to participation.

Fakolade To explore shared Design: N: 23 pwms, Diag: 14.7 (9.0) None 16 Wider MS PA is a continuum; cycle The caregiver/care-
et al. perceptions of qualitative 12 carers Type: 12 RR. 5PP, 2 community: of disengagement; cycle recipient dyad is an
(2018) caregiver/ Data col: focus Sex: pwms 16 F, 7 SP Moving of adjustment. important juncture for
Canada care-recipient dyads group M – carers 6 M, Disability: with MS focusing PA interventions
affected by Analysis: 5F MSWS-12 68.4 in persons with
moderate-to-severe constant Age: pwms 54.6 (16.7) moderate-to-severe MS.
MS-related comparison (9.8) 37–71, Mob. device:
disability about PA. Theory: none carers 57 (13.8) unreported
Sampling: 38–79
purposeful Race: unreported
(Continued)
309
 310

TABLE 18.4 (Continued)

Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion

Fasczewski To explore physical Design: mixed N: 15 (8 did Diag: 7 (4.34) 1–13 None 16 Moving with Motivational strategies Interventions aimed at
et al. activity motivation methods interviews) Type: total 15 RR MS used to maintain increasing long-term
(2018) and benefits with Data col: survey Sex: 7 F, 1 M Disability: physical activity; physical activity adherence
USA a sample of highly & telephone Age: 43.5 (10.05) unreported benefits and impact of should focus on increasing
active pwMS. interview 29–61 Mob. device: PA. autonomy and competence
Analysis: Race: unreported unreported for physical activity in the
thematic individual and promoting
analysis potential increased quality
Theory: SDT of life outcomes from
Sampling: physical activity
convenience participation.

Forsberg To describe Design: N: 24 (15 PwMS, Diag: Home-based 16 Wider MS Experiences from Patients with MS and their
et al. experiences of qualitative 9 PT) Type: computer community: exercising using Wii; PT considered Wii Fit
(2015) using Nintendo Data col: Sex: 9 F, 6 M Disability: exercise Intervention Effects related to the exercises to be fun,
Sweden Wii Fit for balance interviews and (PwMS). F8. M1 Mob. device: programme opinion intervention; challenging, and
exercise, from the focus groups (PT). Perceptions of usability self-motivating. Exercising
perspectives of Analysis: Age: PwMS 52.60 with Wii games can
patients with MS content-constant (12.13) 32–73, address balance
and their comparative Race: unreported impairments in MS, and
physiotherapists Theory: none can be performed at home
(PT). Sampling: as well as in rehabilitation
convenience settings.
(Continued)
Enhancing Healthcare and Rehabilitation
TABLE 18.4 (Continued)
Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Multiple Sclerosis

Analytical Diagnosed (SD)/

Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion
Giacobbi To evaluate Design: Mixed N: 8 Diag.: 8.8 (±6.1), 16 week, 19 Moving with Perceived physical Supervised resistance
et al. perceptions of methods Sex: 8 F Type: unreported, instructor MS responses to the training may promote
(2012) quality of life after a Data col: Face Age: 49.9 (±6.9), Disability: one on one, intervention; perceived improvement in
USA 4-month progressive then telephone 40–61 unreported progressive Psychosocial responses physical ability (i.e.,
resistance training interview Race: unreported. Mob. device: resistance to the intervention; standing, walking, balance,
program for pwMS. Analysis: unreported training. Facilitators and barriers endurance, strength and
A second purpose Constant to exercise behaviour daily tasks) and
was to examine comparative psychosocial changes (i.e.,
participants’ views Theory: PAD social impact, energy/
about factors that Sampling: vigour, emotional responses
facilitated or Convenience and confidence) in women
impeded exercise with RR MS.
behaviour.
Giunti et al. To (1) explore Design: mixed N: 24 (12 PwMS, Diag: Physiotherapy 15 Wider MS MS-related barriers and mHealth solutions for
(2018)a MS-specific needs methods 12 HCPs) Type: 7 RR, 2 PP, 3 at a specialist community; facilitators; increasing PA in persons
Switzerland for MS mobile health Data col: focus Sex: 6 F 6 M SP neurological Intervention mHealth design with MS hold promise.
(mHealth) solutions groups & (PwMS), 6 F 6 M Disability: (EDSS) rehabilitation opinion: considerations; Allowing for realistic goal
for PA, (2) detect surveys (HCP) <4.5 centre Moving with general motivational setting and positive
perceived obstacles Analysis: Age: PwMS Mob. device: MS aspects feedback, whilst
and facilitators for thematic 34–62, HCPs unreported minimising usability
mHealth solutions analysis 26–64 burdens, seems to be
from pwMS and Theory: none Race: unreported critical for the adoption of
healthcare Sampling: such apps. Fatigue
professionals, and purposeful management is especially
(3) understand the important in this
motivational aspects population; more attention
behind adoption of should be brought to this
mHealth solutions area.
for MS.
311

(Continued)
 312

TABLE 18.4 (Continued)

Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion

Hall- To investigate Design: N: 1 Diag: 5 None 10 Moving with Positive thinking as Positive thinking and
McMaster thoughts about PA qualitative Sex: 1 M Type: unreported MS Norman’s way to fight purposeful goals were
et al. motivation. Data col: think Age: 70 Disability: against MS; coping with central to high
(2016a) aloud interview Race: unreported unreported MS by choosing to think PA motivation in our case
NZ Analysis: Mob. device: positively; using positivity study of one individual
inductive 1 Wheelchair to maintain control; and with MS.
thematic using PAto think positively;
analysis goals give a positive
Theory: none purpose to Norman’s
Sampling: engagement in PA; viewing
convenience PA as a necessity for goal
achievement; and goals
providing determination.
Hall- To investigate Design: N: 4 Diag: 2–11 None 13 Moving with Thoughts about purpose, The present findings support
McMaster in-depth the role of qualitative Sex: 2 F 2 M Type: unreported MS self-efficacy, the past, the potential of thought-
et al. positive thinking Data col: think Age: 46–70 Disability: and reinforcement based strategies to increase
(2015b) in physical activity aloud interview Race: unreported unreported through positive PA motivation. Thus, we
NZ motivation. Analysis: Mob. device: 3 thinking. conclude that positive
inductive none, 1 wheelchair thinking and related
thematic analysis thought-based strategies
Theory: none may serve as useful tools to
Sampling: enhance motivation for PA
convenience in the MS community.
(Continued)
Enhancing Healthcare and Rehabilitation
TABLE 18.4 (Continued)
Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Multiple Sclerosis

Analytical Diagnosed (SD)/

Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion

Held To describe the Design: mixed N: 12 (7 pwMS, 5 Diag: unreported None 18 Wider MS Person with MS core Participants have a shared
Bradford behavioural Data col: Phys) Type: 6 RR, 1 SP community: theme: Challenging self goal of maximising gait
et al. decisions used by telephone Sex: 6 F, 1 M Disability: (PDDS) Moving by pushing, but and balance so persons
(2018) persons with MS surveys + (pwMS), 4 F 4.29, (±0.95), 3–6 with MS respecting limits; Person with MS can participate in
USA and physical interviews (Phys), 1 M Mob. device: 2 with MS theme: valued life roles.
therapists to Analysis: (Phys) walker, 4 cane, 2 Resolving uncertainty; Understanding the
maximise gait and content-constant Age: pwMS 54.43 none Person with MS differences in the
balance following comparative (±10.74) 41–67 supporting: Action: behavioural decisions and
outpatient physical Theory: SCT Race: unreported Setting goals and building optimising skill sets in
therapy. Sampling: routines and resilience; shared .decision-making
purposeful Physical therapist core and self-management may
quota theme: Finding the enhance the therapeutic
right fit; partnership and
Physical therapist engagement in gait- and
supporting theme 1 : balance-enhancing
Seeing similarities and behaviours.
getting to know
differences;
Physical therapist
supporting theme 2:
Developing a partnership
and plan for
empowerment and
self-management;
Keeping their lived world
large; Overarching theme:
Keeping their lived world
large, or participation in
valued life roles.
313

(Continued)
 314

TABLE 18.4 (Continued)

Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion

Horton To investigate the Design: N: 10 (5 pwMS, Diag: 44 (12.0) None 16 Wider MS Maintaining Rather than an inexorable
et al. exercise qualitative 5 spouses) Type: unreported community: independence, downward decline in
(2015) experiences of Data col: Sex: 5 F, 5 M Disability: EDSS Moving overcoming isolation, physical ability that is
Canada individuals with interviews Age: pwms 57.5 4–6 with MS and negotiating if common with MS,
MS and the extent Analysis: (11.6) 45–70, Mob. device: exercise is worth it. participants spoke of a
to which these hierarchical spouses 56.8 unreported positive reversal in
experiences affect, content analysis (11.7) 44–69 physical function, which
or are affected by, Theory: none Race: unreported has had far-reaching
their spousal Sampling: implications for multiple
relationship. convenience aspects of their lives,
including their
psychological outlook,
their sense of
independence, overcoming
isolation, and their
relationship with their
spouse, all of which are
identified in the literature
as notable aspects of life
affected by the disease.
(Continued)
Enhancing Healthcare and Rehabilitation
TABLE 18.4 (Continued)
Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Multiple Sclerosis

Method/ Mean Years

Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion

Hundza To examine the Design: cross N: 30 (15 stroke, Diag: 11.40 (9.90) None 14 Moving with ‘Dealt a new set of cards’. The presence of similar
et al. facilitators for, and sectional mixed 11 MS, 4 Type: 3 RR, 1 PP, 7 MS (2) ‘Influence of barriers and facilitators
(2016) barriers to, methods incomplete SP interactions between across the clinical groups
Canada participation in Data col: spinal cord Disability: conditions and context’ suggests that rehabilitation
physical activity interviews injury) unreported assessment and treatment
pwND. Analysis: Sex: stroke 8 F 7 Mob. device: pwms as well as support and
inductive M, MS 7 F 4 M, 5 none, 2 walker, 4 services to promote valued
data-driven incomplete cane forms of physical activity
approach spinal cord could be organised and
Theory: none injury M4 delivered based on
Sampling: Age: 58.6 (11.7) limitations in mobility and
purposeful 23–78 functioning rather than
Race: unreported clinical diagnosis.
Kasser To explore the Design: N: 12, Diag.: 9.9 (±7.2), Ongoing, 16 Intervention Exercising to maintain Participants appreciated the
(2009) meaning of Qualitative Sex: 10 F Type: 7 RR, 2 PP, 3 instructor opinion: function and health: constant of exercise and
USA exercise in the lives Data col: Face Age: 46.3 (±7.3), SP, group Moving with Enhanced exercise the support of others in
of individuals with interview 32–55, Disability: exercise MS self-efficacy: Feelings of light of the highly variable
MS and describe Analysis: Race: unreported. unreported program hope and optimism and changing nature of
the motivational Thematic Mob. device: 1 WC, their MS. The exercise
basis that analysis 2 Ca, 9 none. program provided a
contributed to Theory: SCT personal, physical, and
their exercise Sampling: social venue from which
involvement. Purposive participants could learn
Convenience about their own strengths,
needs, and confidence
capabilities.
(Continued)
315
 316

TABLE 18.4 (Continued)

Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion
Kayes et al. To explore the Design: N: 10 Diag.: 8.8 (±4.9), None 14 Moving with Beliefs about physical For people with MS, the
(2011) barriers and Qualitative Sex: 7 F Type: 4 RR, 3 PP, MS activity; related decision to engage in
NZ facilitators to Data col: Face Age: 44.3 (±6.6), 3 SP, emotional responses; physical activity (or not) is
engagement in interview 34–53 Race: Disability (GNDS): and the role of fatigue in complex, fluid, and
physical activity Analysis: 9 Caucasian, mean = 17.1 (±10) the decision to take part individual; made more
from the Grounded 1 Māori. Mobility dev. 3 WC, in physical activity. complex by the
perspective of theory 1 walker, 2 cane, 4 unpredictable nature of
pwMS. Theory: None none. MS. Rehabilitation
Sampling: professionals attempting
Purposeful to engage people with MS
in a physical activity
programme should
consider adopting an
individualised approach to
barrier management which
takes into account
personal beliefs and
perceptions regarding
physical activity
engagement.
(Continued)
Enhancing Healthcare and Rehabilitation
TABLE 18.4 (Continued)
Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Multiple Sclerosis

Analytical Diagnosed (SD)/

Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion
Kersten To conduct an Design: quasi N: 15 Diag: 10.9 (7.7) Exercise 15 Intervention Motivation: Training & Qualitative analyses
et al. exercise-based experimental Sex: 12 F 3 M Type: 8 RR, 3 PP, 4 education opinion: therapeutic showed improved
(2014) patient education Data col: Age: 48.1 (9.2) SP and then Moving with management: Training self-confidence and
Germany program in order intervention and Race: unreported Disability: EDSS 4 home MS barriers: Knowledge identified training
to ensure interview (1.5) exercise interrogation regarding strategies and barriers.
participants Analysis: content Mob. device: programme training theory: This pilot study provides
training analysis unreported Knock-out criteria: evidence that PwMS are
management Theory: none Quality of Life: able to acquire good
beyond the project. Sampling: Subjective attitude knowledge about physical
convenience towards physical exercise and apply this
exercise: Criticism and knowledge successfully in
tips for further patient training management.
education programs Exercise-based patient
Kersten To test the feasibility Design: N: 20 (10 pwms, Diag: unreported Exercise goal 13 Intervention Rehabilitation in context: education seems to be a
et al. and acceptability of qualitative 10 stroke) Type: unreported setting using opinion Encapsulating the feasible option to maintain
(2015) an implementation Data col: Focus Sex: 14 F 6 M Disability: ‘if-then’ usefulness of the if-then or improve patients’
NZ intention strategy group, interview Age: 48–87 unreported plans. strategy in thinking integral constitution
(if-then plans) and intervention Race: 1 Chinese, Mob. device: about the patient in the concerning physical and
increasingly used in Analysis: 18 NZ unreported context of complexity; mental health.
health psychology thematic European, usefulness of
to bridge the goal analysis 1 European home-based
intention-action gap Theory: none rehabilitation: perceived
in rehabilitation Sampling: need for a few more
with people with convenience sessions
neurological
conditions who are
experiencing
difficulties with
mobility.
317

(Continued)
TABLE 18.4 (Continued)
318

Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion
Kinnett- To examine the Design: N: 53 Diag: unreported None 13 Moving with Physical activity Results highlight the need
Hopkins interpretations of qualitative Sex: 42 F 1 1M Type: unreported MS -consistent definition, to provide and utilise
(2017b) physical activity, Data col: Age: 55.3 (9.4) Disability: EDSS -ambiguous definition: consistent definitions for
USA exercise, and interview 31–70 4.09 (1.51) 1–6, Exercise -consistent accurate understanding,
sedentary Analysis: Race: Mob. device: definition, -ambiguous proper evaluation and
behaviour by thematic 53 Caucasian unreported definition: Sedentary communication of
persons with analysis behaviour -consistent physical activity, exercise,
multiple sclerosis. Theory: none definition, -in-consistent and sedentary behaviours
Sampling: definition, ambiguous among persons with
purposeful definition multiple sclerosis. The
application of consistent
definitions may minimise
ambiguity, alleviate the
equivocality of findings in
the literature, and
translate into improved
Learmonth To explore the Design: N: 14 Diag.: 14.8 (±6.3), Group 16 Intervention The benefits of the class, communication about these
et al. experiences and Qualitative Sex: 10 F Type: unreported, community- opinion helping them to behaviours in multiple
(2013) views of people Data col: Focus Age: 52.1 (±8), Disability (EDSS): based overcome barriers to sclerosis.
UK moderately group 40–68 6.1 (±0.4) exercise class exercise. People moderately affected
affected with MS Analysis: General Race: Mob. device: with MS feel group
following inductive 14 Caucasian. unreported exercise offers symptom
participation in a Theory: None improvement and social
12-week exercise benefits. MS-related
programme. symptoms and a lack of
service options may
prevent those with MS
exercising.
(Continued)
Enhancing Healthcare and Rehabilitation
TABLE 18.4 (Continued)
Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Multiple Sclerosis

Analytical Diagnosed (SD)/

Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion

Physiotherapists should
work alongside exercise
professionals to establish
exercise services for those
with MS.
Learmonth To explore the Design: N: 15 Diag: 10–15 None 19 Moving with Everyday experiences: Physical activity and exercise
et al. meanings, qualitative Sex: 12 F 3 M Type: 7 RR, 2 PP, MS Physical activity and are important components
(2015) motivations, and Data col: Age: 52 (8.8) 6 SP exercise experiences of comprehensive MS care
USA outcomes of interviews Race: unreported Disability: and patient
physical activity in Analysis: Mob. device: self-management.
wheelchair users thematic 15 wheelchair Physical activity and exercise
with MS. analysis for those with advanced MS
Theory: none who are wheelchair users
Sampling: should be part of everyday
purposeful life and should incorporate
adaptive strategies and
accessible facilities.
The integration of
behavioural change
constructs into physical
activity and exercise
interventions might
overcome negative personal
beliefs and promote
successful initiation and
maintenance of physical
activity and exercise.
(Continued)
319
TABLE 18.4 (Continued)
320

Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion
Learmonth To explore the needs Design: N: 50 Diag: 13.0 (8.4) None 16 Moving with Information and Patients with MS frequently
et al. and wants of qualitative Sex: 33 F 17 M Type: 41 RR, 1 PP, MS knowledge on the interact with healthcare
(2016) pwMS regarding Data col: Age: 49.2 (10.3) 5 SP, 3 Ben benefits of exercise and providers and are generally
USA exercise promotion interviews Race: unreported Disability: EDSS exercise prescription: unsatisfied with exercise
through healthcare Analysis: ≤5.5 Materials to allow home promotion during
providers. thematic Mob. device: and community interactions. Healthcare
analysis unreported exercise; Tools for providers can address the
Theory: SCT initiating and low uptake of exercise
Sampling: maintaining exercise among persons with MS by
convenience behaviour acting upon the identified
unmet needs involving
materials, knowledge and
behaviour change
strategies for exercise.
Learmonth To identify the Design: N: 50 Diag: 13.0 (8.40) None 17 Moving with Approach for receiving Based on the views and
et al. desired and Qualitative Sex: 33 F 17 M Type: 41 RR, 1 PP, MS exercise promotion: opinions of participants in
(2017a) preferred format Data col: Age: 49.2 (10.3) 5 SP, 3 Ben Ideal person for our study, it is clear that
USA and source of Interview Race: unreported Disability: 3.50 promoting exercise we must ensure that
exercise Analysis: (2.00) healthcare providers are
information for pw Thematic Mob. device: prepared to provide
MS that can be Analysis unreported exercise information to
delivered through Theory: None patients, research and
healthcare Sampling: develop exercise
providers. Purposeful promotion material in
print media, and establish
credible electronic sources
of exercise promotion for
persons with MS.
(Continued)
Enhancing Healthcare and Rehabilitation
TABLE 18.4 (Continued)
Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Multiple Sclerosis

Analytical Diagnosed (SD)/

Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion
Learmonth To explore the needs Design: N: 44 HPs NA None 17 Wider MS Opportunities for Providers in MS healthcare
et al. of healthcare Qualitative (13 Neuro, community exercise promotion: consider the patient-
(2017b) providers for Data col: 10 OT, 11 Phys, Healthcare provider provider interaction
USA promoting exercise Interview 10 nurses education on exercise within the healthcare
behaviour among Analysis: Sex: F = 30, for persons with MS; system, healthcare team,
pwMS. Thematic M = 14 Patient tools/strategies and clinical appointment
analysis Age: 49.7 (±12.8) as a novel opportunity for
Theory: SCT Race: exercise promotion. Such
Sampling: an opportunity requires
Purposeful education of healthcare
providers and provision
of tools and strategies for
exercise promotion
among persons with MS
Learmonth To understand Design: N = 18 Diag: unreported Home-based 20 Intervention Enrolment and The current physical activity
et al. experiences of Qualitative Sex: 18 F Type: 18 RR exercise opinion assessment: guidelines for persons with
(2018)b persons with MS Data col: Age: 50 (10) Disability: 1* (IQR following Improvement in the MS are acceptable to
USA who participated in Interview Race: 14 White, 0–2.5) current design and delivery of persons with MS and
a feasibility research Analysis: 4 Black Mobility device: exercise the exercise programme rehabilitation professionals
study of a Thematic none guidelines for components should prescribe these
home-based exercise analysis persons with guidelines as appropriate.
intervention Theory: SCT MS Consideration should be
grounded in current Sampling: made to the use of
physical activity Convenience individualised recruitment
guidelines and methods to optimise
supplemented with participation of persons
behavioural change with MS in exercise
modules. interventions.
(Continued)
321
 322

TABLE 18.4 (Continued)

Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion

Rehabilitation professionals
should combine behaviour
change approaches with
exercise interventions to
optimise exercise
participation in persons
with MS.
Mulligan To report on an Design: N: 27 Diag: 15.48 (9.66) Community- 11 Intervention Content and pragmatics Evidence indicated that the
et al. innovative qualitative Sex: 23 F 4 M Type: 9 RR, 3 PP, 8 based PA. opinion: of Blue Prescription: Blue Prescription
(2013) program, entitled Data col: Age: 51 (11.1) SP, 7 unknown collaboration Moving Interactions required for approach can provide a
NZ the ‘Blue interview 34–71 Disability: between with MS delivery of Blue collaborative and flexible
Prescription Analysis: general Race: 2 European, unreported physio- Prescription: way for physical
approach’, in inductive 24 White, 1 Mob. device: 6 therapists Improvements and therapists to work with
which physical analysis Maori wheelchair, 3 and pwMS refinements to the Blue individuals with MS, to
therapists work Theory: none walker (Blue Prescription approach increase participation in
collaboratively Sampling: Prescription) community-based
with persons with convenience physical activity. To
a disability to further develop the
promote approach, there is a need
community-based to address issues related
physical activity to the use of standardised
participation. measures and develop
strategies to train physical
therapists in collaborative
approaches for promotion
of physical activity.
(Continued)
Enhancing Healthcare and Rehabilitation
TABLE 18.4 (Continued)
Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Multiple Sclerosis

Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion
The integration of self-help
and professional help
provided by the Blue
Prescription approach
appeared to result in
successful promotion of
physical activity in
persons with MS.
Additional testing is
required to examine its
efficacy in other healthcare
systems, in conditions
beyond MS, and in terms
of its economic impact.
Normann To investigate how Design: N: 12 Diag.: 8.8 (±6.4), 1 day session 20 Intervention Knowledge of body part Contextualised perceptions
et al. PwMS perceive Qualitative Sex: 9 F Type: 7 RR, 2 PP, (≤1.5 hours) opinion: interactions and of improvements in
(2013) movement during Data col: Face Age: 48 (±13.5), 3 SP, of PT Moving consequences for AD: movement may strengthen
Norway single sessions of interview 31–81, Disability (EDSS): assessment, with MS Insight into limitations the person’s sense of
physiotherapy. Analysis: Content Race: unreported. 3.6 disability, consultation, and possibilities of ADL ownership and sense of
analysis Mob. Device: and exercise agency and thus promote
Theory: None 7 none, 2 Ca, 1 Wa, advice autonomy and self-
Sampling: 3 WC encouragement. The
Purposeful findings underpin the
(Continued)
323
 324

TABLE 18.4 (Continued)

Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion
importance of
contextualised perceptions
of movement based on
exploration of potential for
change, as an integrated
part of information and
communication in the
healthcare for PwMS.
Palacios- To explore the Design: N: 24 Diag: 9.68 (6.76) Home-based 14 Intervention Regaining previous The patients’ experiences
Ceña et al. experiences of qualitative Sex: 13 F 11 M Type: 16 RR, 5 PP, computer opinion capacity and abilities; gathered in this study
(2016) multiple sclerosis Data col: Age: 36.69 (8.13) 3 SP exercise sharing the disease; highlight perceptions of
Spain patients who interviews 20–60 Disability: EDSS 3.9 programme adapting to the new unexpected improvement,
performed a Analysis: Race: unreported (0.6) 3–5 treatment; comparing an eagerness to improve,
virtual home- convenience Mob. device: oneself and the positive
exercise Theory: none unreported opportunity of sharing
programme using Sampling: treatment with their social
Kinect. convenience entourage thanks to the
games. These results can
be applied to future
research using video
consoles, by
individualising and
adapting the games to the
patient’s abilities, and by
developing a new field in
rehabilitation.
(Continued)
Enhancing Healthcare and Rehabilitation
TABLE 18.4 (Continued)
Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Multiple Sclerosis

Analytical Diagnosed (SD)/

Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion
Paul et al. To explore the Design: N: 30 Diag: 12.70 (9.05) Home-based 14 Intervention Use of the website: Web-based physiotherapy
(2014) effectiveness and qualitative Sex: 24 F 6 M Type: 17 RR, 4 PP, 5 computer opinion Physical and is a feasible method of
UK participant Data col: Age: 51.7 (11.2) SP, 2 Ben, 2 physiotherapy psychological change: delivering physiotherapy
experience of intervention Race: unreported Unknown and exercise Web-based and is acceptable to
web-based Analysis: Disability: EDSS 5.9 programme physiotherapy as a people moderately
physiotherapy for thematic (0.5) 5–6.5 mode of delivery: affected with MS.
pwMS. analysis Mob. device: Future plans All participants rated the
Theory: none unreported web-based physiotherapy
Sampling: programme as good or
convenience excellent and would be
happy to use it again in
the future.
Ploughman To describe the Design: N: 18 Diag: unreported None 14 Moving with Finances: Social support: Healthcare, social
(2012) factors influencing qualitative Sex: 14 F 4 M Type: 3 RR 2 PP 10 MS Strategies to stay engagement, lifestyle, and
Canada healthy aging from Data col: Age: 66.5 (6.7) SP 1 Ben 2 healthy: The MS independence make critical
the perspective of interview 56–80 Unknown experience: Healthcare contributions to
the older person Analysis: Race: unreported Disability: interactions health-related quality of life
with MS in order thematic unreported among older people with
to build curricula framework Mob. device: 8 MS. This contribution
for MS self- analysis wheelchair, 5 depends on less-commonly
management Theory: none walker, 5 none addressed factors: financial
programs. Sampling: flexibility, mental and
purposeful cognitive health, resilience
and social support.
Strategies that target factors
are important components of
a comprehensive approach
to rehabilitation and
self-management of MS.
325

(Continued)
 326

TABLE 18.4 (Continued)

Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion

Plow et al. Identify facilitators Design: N: 13 Diag.: 12.2 (±14.1) 16 week group 16 Moving with Self-efficacy: Outcome Results from this pilot study
(2009) and barriers to Qualitative Sex: 11 F Type: 9 RR, 2 SP, 2 wellness MS expectations: suggest that PA
USA physical activity Data col: Face Age: 46.7 (±13.4), Unk (behavioural Self-regulation: Physical interventions will need to
(PA), and explore interview 18–61 Disability (MSFC): intervention) environment: Social implement multiple
the utility of SCT Analysis: General Race: unreported. Range -1.2–0.78. and home environment: Primary strategies that target
and Transactional Inductive Mob. device: 8 DIY exercise appraisal: Secondary self-efficacy, social
Model of Stress Theory: SCT none, 7 appraisal: Coping style environment and coping
and Coping Sampling: unreported styles. We found SCT and
(TMSC) in Purposeful TMSC useful in
understanding PA understanding PA
behaviour among behaviour amongst
pwMS. persons with MS: however,
a limitation to these
theories is that they are not
explicit in the relationship
between health and
cognitions. Future research
will need to explore how
to incorporate models of
health and function into
existing behaviour change
theories.
(Continued)
Enhancing Healthcare and Rehabilitation
TABLE 18.4 (Continued)
Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Multiple Sclerosis

Design/Data
Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion

Plow et al. To (i) examine the Design: N: 30 (14) Diag: 9 (7) Pamphlet- 12 Intervention Barriers: Action plan Fatigue, pain, and lack of
(2014) potential of the Data col: Sex: 30 F Type: 30 RR based PA opinion: goals time were the commonly
USA intervention to questionnaire Age: 47.5 (9.5) Disability: PDDS home Moving cited barriers to engage in
improve and interview Race: 10 ‘racial 2.5 (1.57) 1–5 programme with MS the PA program: whereas
psychosocial Analysis: minority’ Mob. device: the pamphlets, phone calls
constructs and Issue-focused 10 cane and action planning were
stages of change analysis cited as motivators.
placement, Theory: None Participants used fatigue
(ii) describe Sampling: management strategies,
participants’ Convenience enlisted social support,
perceived and modified their
motivators, environment to routinely
barriers, and engage in the PA program.
strategies for Strategies were identified
engaging in an to improve the PA
exercise program, intervention in future
and (iii) identify research.
strategies to better
target and tailor
the print-based
intervention in
future research.
(Continued)
327
 328

TABLE 18.4 (Continued)

Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion
Plow and To examine the Design: N: 30 Diag.: 9 (±6.8), Home-based 15 Intervention Reflecting on my abilities Improving the usability and
Finlayson usability of Qualitative Sex: 23 F Type: unreported, computer opinion (i.e., Wii Fit provided customisability of
(2014) Nintendo Wii Fit to Data col: Age: 43.2 (±9.3), Disability (PDDS): exercise feedback that commercially available
US promote physical Telephone range 8 none, 7 mild, 14 programme encouraged participants exergaming technology
activity in pwMS. interviews unreported, moderate, 1 to reflect on their health could be of benefit to
Analysis: Race: unreported. unknown. and function): Fitting people with disabling
Inductive Mob. device: 1 Ca, into one’s narrative conditions. Rehabilitation
thematic 28 none, (i.e., participants who professionals need to
Theory: 1 unknown. used Wii Fit regularly consider patients’
Occupational described themselves as functional level,
well-being exercisers and that Wii surrounding environment
(Doble and Fit met their needs to and preferences when
Santha 2008) engage in exercise): prescribing a Wii Fit-based
Sampling: Convenient and fun to exercise programme.
Purposeful play (i.e., many
participants described
having fun whilst
playing Wii and the
advantages of using Wii
Fit in their home vs
going to gym): Novel
technology, but same
old exercise barriers
(i.e., barriers described
for using Wii Fit were
(Continued)
Enhancing Healthcare and Rehabilitation
TABLE 18.4 (Continued)
Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Multiple Sclerosis

Design/Data
Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion
similar to barriers for
engaging in a typical
exercise programme):
Usability issue (i.e.,
difficulties in learning to
use Wii Fit and inability
to customise exercises to
meet the functional
level of the participant).
Salminen To investigate the Design: N: 68 Diag: median = 12, Community- 15 Intervention Rehabilitee him/herself; The findings show that
et al. helpful qualitative Sex: 46 F 22 M 0–33 based opinion: structures of everyday helpful rehabilitation for
(2014) components of Data col: focus Age: 47.0 (9.10) Type: 27 RR, 16 PP, exercise Moving life; information; people with MS is not a set
Finland rehabilitation from group & 28–61 22 SP, 3 unknown group with MS activity physical of mechanistic
the point of view interview Race: unreported Disability: EDSS environment; social interventions, but requires
of pwMS. Analysis: 5.50 (1.30) 4–8 relationships; support good social relationships
inductive Mob. device: and support.
content analysis unreported
Theory: none
Sampling:
convenience
(Continued)
329
 330

TABLE 18.4 (Continued)

Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion
Schneider To explore the lived Design: N: 7 Diag.: 6.1 (±2.9) None 14 Moving with Self-management, The findings highlight the
and Young experiences of Qualitative Sex: 7 F 2–9, MS treatments, and stated importance of
(2010) women living with Data col: Face Age: 50.4 (±5.2), Type: 4 RR, 3 PP personal attitude informative dialogue with
Canada multiple sclerosis interview 41–55 Disability: a physician at the time of
and their perceived Analysis: Race: 7 unreported diagnosis, as physicians
barriers to Thematic Caucasian. Mob. device: 1 WC, have the potential to do
accessing physical content analysis 6 none much more for these
activity. Theory: None women than just prescribe
Sampling: medications.
Purpose Acknowledging the key
snowball importance of doctors’ role
in assisting MS patients
with the day-to-day
management of their
condition is essential, if
physicians hope to have a
beneficial impact on these
women’s overall quality
of life.
fatigue perceptions Interpretative Mob. device: tiredness: Exercise control over fatigue’ and
in people with description 10 none outcomes promote ‘listening to your
multiple sclerosis. Theory: None body’, in order to maximise
Sampling: the benefits of exercise
Purposeful intervention for individuals
with MS-related fatigue.
(Continued)
Enhancing Healthcare and Rehabilitation
TABLE 18.4 (Continued)
Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
Multiple Sclerosis

of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion
Smith et al. To explore the Design: N: 10 Diag.: 13.1 (±14.6) 8 week DIY 17 Intervention Perceived control: Healthcare professionals
(2009) influence of an Qualitative Sex: 8 F, 2 M Type: 10 RR (physio- opinion: Listening to your body: need to be cognisant of
NZ 8-week exercise Data col: Face Age: 46.4 (±10.9), Disability: therapist Moving Reaching the edge: strategies which may
programme on interview 32–61 unreported, suggested) with MS Nature of enhance ‘perceived
Analysis: Race: unreported. aerobic
exercise
Smith et al. To describe the Design: N: 9 Diag.: unreported Weekly 16 Intervention Wellness philosophy: Identification of factors
(2011) experiences of Qualitative Sex: 9 F Type: RR 5, SP 3, 1 self-guided opinion: Related goal: Belief that influencing perceived
NZ pwMS-related Data col: Face Age: range 28–70 unknown exercise Moving control is possible; control over fatigue will
fatigue, who interview Race: unreported. Mob. device: with MS Feeling safe; Feeling assist healthcare providers
engaged in Analysis: unreported supported; Defining when facilitating
community-based Thematic self; Managing limits; community exercise
exercise activities in analysis Satisfied with trade-offs; choices for people with
order to discover Theory: None Self-integrity MS.
how fatigue Sampling:
influenced their Purposeful
exercise
participation.
(Continued)
331
 332

TABLE 18.4 (Continued)

Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion
Smith et al. To investigate Design: N: 27, Diag.: 15.8 (±10.3), Community 14 Intervention ‘Support’ (subthemes: The Blue Prescription
(2013a) experiences of Qualitative Sex: 23 F, 4 M Type: 8RR, 3PP, 7SP, based PA. opinion: ‘The therapeutic Intervention was
NZ participating in a Data col: Face Age: 51 (±11.1), 9 unknown collaboration Moving relationship’: ‘The Blue perceived by participants
feasibility trial of a interview 34–71 Disability: between with MS Prescription approach’: to be supportive,
novel Analysis: General Race: unreported, physio- ‘Supporting motivating and enabling
physiotherapy inductive 26 Caucasian, Mob dev.: 7WC, therapists themselves): Motivation when attempting to
intervention (Blue Theory: 1 Māori. 2 Wa, 8 Ca, and pwMS to participate: increase levels of PA.
Prescription). Transtheoretical 10 none. (Blue Improving the Blue Participants with multiple
(Prochaska and prescription) Prescription approach sclerosis who were ready
Velicer 1997) to adopt higher levels of
Sampling: PA appeared to be more
Convenience receptive to the Blue
Prescription intervention
than those who were not.
Frequently used outcome
measures might require
further development or
refinement in order to
make better sense to
people with multiple
sclerosis living in
New Zealand.
(Continued)
Enhancing Healthcare and Rehabilitation
TABLE 18.4 (Continued)
Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Multiple Sclerosis

Method/ Mean Years

Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion
Smith et al. To describe the Design: N: 15 (6 PT, 3 OT, Diag: None 13 Wider MS Nature of fatigue: The nature of fatigue and
(2013b) experiences of four Qualitative 3 Support Type: community Professional challenges professional challenges
NZ groups of Data Col: Focus worker, Disability: (Subthemes: influenced clinician practice
healthcare Groups & 3 Neuro) Mob. device: • Barriers to by ‘demanding creativity’
providers who Interviews Sex: unreported implementation with regard to exercise
facilitate exercise Analysis: Age: unreported • Stirring conflict prescription and advice.
interventions for Thematic Race: unreported • Modifying roles): Healthcare providers are
people with analysis Demanding encouraged to consider
MS-related fatigue. Theory: None creativity strategies of active listening
Sampling: (Subthemes: and careful observation
Purposeful • Challenging science when providing
• Mind-body) individualised exercise
programs for people with
MS-related fatigue. In
addition, recognition and
understanding of the
complex nature of fatigue
by the interdisciplinary
team might facilitate more
positive exercise
experiences for this
population.
Smith et al. To better Design: N: 18 Diagnosed: 3 None 13 Moving with Emotional responses to exercise engagement and
(2015) understand how qualitative Sex 18 M yrs–21 yrs MS fatigue and exercise achieve greater
NZ MS-related fatigue Age: 36–68 Type: 10 RR, 5 PP, Self-regulation self-efficacy. Healthcare
3 SP

(Continued)
333
 334
TABLE 18.4 (Continued)
Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion
influences exercise Data col: Race: Disability: processes in response to professionals might
participation. interviews (2 17 Caucasian, unreported fatigue and exercise. consider introducing goal
telephone, 16 1 Maori Mob. device: Subthemes: Complex readjustment strategies to
face to face) unreported expressions of fatigue; help men with MS-related
Analysis: Engaging in exercise fatigue retain perceived
thematic and goal adjustment; control over exercise
analysis exercise engagement engagement and achieve
Theory: none and achieve greater greater self-efficacy.
Sampling: self-efficacy.
purposeful
Sweet et al. To examine the Design: N: 21 Diag: 12.4 (9.92) None 15 Moving with Antecedents: Information Healthcare professionals,
(2013) preferred sources qualitative Sex: 13 F, 8M Type: 9 RR, 5 PP, 4 MS carrier factors: Content National MS Societies, and
Canada and methods for Data col: focus Age: 48.9 (14.2) SP, 3 Unknown and tools to deliver peers should work
acquiring physical group and 18–80 Disability: EDSS physical activity together to deliver specific
activity information telephone Race: unreported 4.63 (2.19) messages: Information and relevant physical
of individuals with interview Mob. device: seeking actions activity messages the MS
MS using the Analysis: 9 none, population.
Comprehensive thematic 12 unknown
Model of analysis
Information Theory:
Seeking. A Comprehensive
secondary objective Model of
was to explore the Information
barriers and Seeking
facilitators to Sampling:
physical activity convenience
information seeking
(Continued)
Enhancing Healthcare and Rehabilitation
TABLE 18.4 (Continued)
Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Multiple Sclerosis

Analytical Diagnosed (SD)/

Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion
Thomas To test the feasibility Design: mixed N: 30 Diag: 0–16 Home-based 14 Intervention Acceptability of study Most study participants
et al. of conducting a method Sex: 27 F 3 M Type: 21 RR 1 PP 5 computer opinion: design: Acceptability of were positive about
(2017) definitive trial of the Data col: semi Age: 49.3 (8.7) SP 1 Ben 2 exercise Moving the Mii-vitaliSe Mii-vitaliSe, which was
UK effectiveness and structured 33–65 Unknown programme with MS intervention – seen to be an activity
Note: Full cost-effectiveness of interview Race: all Disability: participants levels. Materials and
qualitative Mii-vitaliSe: a Analysis: Caucasian unreported physiotherapy contact
results in home-based, thematic Mob. device: time were acceptable.
preparation. physiotherapist- analysis unreported
supported Theory: SCT
Nintendo Wii Sampling:
intervention. convenience
Toomey To explore the Design: N: 9 (2 PwMS Diag: 15+ Home-based 15 Wider MS Physical and psychological The Exercise Buddy system
and Coote development, qualitative 1 spouse, 2 Type: unreported buddy community benefits for PwMS and is a home-based
(2013) implementation, Data col: semi phys, 2 exercise Disability: exercise physical and intervention delivered at a
Ireland and outcome of a structured buddys with unreported programme psychological benefits for community level, and has
new model of care interview their supervisor) Mob. device: carers emerged. Within potential as a model of
has used Exercise Analysis: Sex: unreported unreported communication care with both physical
Buddies (paid thematic Age: unreported difficulties, themes of and psychological benefits
professional carers) analysis Race: unreported defining roles & reported for PwMS and
to exercise with Theory: none expectations and their carers. Issues
PwMS under the Sampling: feedback & discussed mostly related
direction of convenience communication during to communication and
community implementation training. These need to be
physiotherapists. emerged. A subtheme of addressed for future
Insufficient training of successful development.
buddies emerged within
the theme of Defining
roles and expectations.
(Continued)
335
 336

TABLE 18.4 (Continued)

Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion
Van der To explore the Design: Mixed N: 10. Diag.: unreported 12 week 16 Intervention Participation in targeted Group-based core stability
Linden feasibility, efficacy, methods Sex: unclear Type: unreported group-based opinion Pilates classes; exercise or Pilates for
et al. and the Data col: Face Age: unclear Disability: wheelchair Perceived benefits of people with MS who use
(2014) participants’ interview Race: unreported. unreported, Pilates Pilates program; No wheelchair is a feasible
UK experiences of a Analysis: Mob. device: 10 WC perceived benefits: and safe way of exercising
Pilates programme Thematic Negative effects; for this patient group.
for pwMS who use analysis Difficulty identifying Pilates exercises for people
a wheelchair. Theory: None change; Small changes moderately to severely
Sampling: that are valued; Class affected by MS resulted in
Purposeful content and structure; a decrease in back and
Views relating to home shoulder pain and
exercise; Negative views improvement in sitting
regarding exercise balance.
classes not targeted at Future appropriately
people with MS: powered randomised
Barriers to participation; controlled studies into
Attitudes towards Pilates for people with MS
continuing Pilates reliant on wheelchair are
warranted.
(Continued)
Enhancing Healthcare and Rehabilitation
TABLE 18.4 (Continued)
Summary of Each Study, Participant Characteristics, Associated Intervention, Quality Score and Inclusion of the Consequences or Determinants
of Physical Activity and Exercise Participation. Note all Participants Persons with MS Unless Otherwise Noted
Design/Data
Multiple Sclerosis

Collection
Method/ Mean Years
Analytical Diagnosed (SD)/
Approach/ Years Diagnose
Theoretical Rang e)/Disease
Study/ Perspective/ N/Sex/Age Type/Disability Associated
Country Study Aim Sampling (Mean, SD and Severity/Mobility Intervention Quality Area/ Main Themes Main Clinical Points/
of Study (Abbreviated) Method Range)/Race Device Use Description Score Theme Emerging in Study Conclusion
Van To identify the Design: N: 6 Diag.: unreported, None 10 Moving with Group atmosphere: Participants identified that
Ruymbeke effects of physical Qualitative Sex: 6 F Disability: (inclusion MS Everyday activities as being in a group
and activity on the Data col: Face Age 64.5 unreported. criteria exercise atmosphere and having a
Schneider lives of those interview (±unreported) Type: 2 RR, 2 PP, 1 required they competent and motivating
(2013) living with MS and Analysis: Range unreported Benign, 1 exercised program facilitator are key
Canada to determine their thematic unknown twice per aspects of any exercise
perception of their analysis Disability: week) program. Likewise, the
overall well-being Theory: None unreported idea that everyday
with a focus on Sampling: Mob. device: 2 WC, activities and tasks can be
physical, Purposeful 4 unknown used as a means of
emotional, and physical activity also was
social determinants mentioned by many
of health. participants.

Note: Data are described as mean and standard deviation unless otherwise noted *.
Demographic details of whole sample reported, unable to differentiate interviewed MS sample from larger sample.
Data col: data collection method, Analysis: analytical approach, Theory: theoretical perspective, F: female, Diag: years diagnosed, Type: disease type, Disability:
disability severity, Mob. Dev. mobility device used (highest dependency recorded), WC: wheelchair, Wa: walker, Ca: cane/single point assistance, RR: relapsing
remitting MS, PP: primary progressive MS, SP: secondary progressive MS, Ben: benign MS, EDSS: Expanded Disability Status Scale, PDDS: patient determined
disease steps, MSIS-29: MS Impact Scale-29, GNDS: Guys Neurological Disability Scale, MSFC: Multiple Sclerosis Functional Composite, PwMS: people with
Multiple Sclerosis, Phys: physical therapist/physiotherapist, OT: occupational therapist, Neuro: neurologist, NA: not applicable, HCPs: healthcare practitioners,
AF: aqua fitness.
a Giunti: PwMS age median = 43.5, (IQR = 40.25–50), HCPs age median = 40 (IQR = 28–53.25), EDSS median = 4 (IQR = 3.75–5.12), and years since diagnosis
median = 17 (IQR = 10.50–21.50).
b Learmonth: EDSS median = 1 (IQR = 0–2.5).
337
338 Enhancing Healthcare and Rehabilitation

Participants
The opinions of a total of 106 people involved in the MS community were gathered in the
interviews or focus groups. Demographic and clinical data were not always reported for
participants and reported data can be seen in Table 18.4. Four studies reported the age, sex,
and time in clinical practice for their healthcare professional participants (Forsberg et al.
2015; Giunti et al. 2018; Held Bradford et al. 2018; Learmonth et al. 2018a), overall average
age was around 42 years, overall there were 48 female and 22 male healthcare profession-
als, and overall the average time in clinical practice was around 15 years. In the one study
which included fitness centre managers (Anderson et al. 2017), detail on age and sex was
not reported. The two studies who included carers (Horton et al. 2015; Fakolade et al. 2018)
reported the age of carers to be around 56 years, and there were opinions from 20 female
and 7 male carers.

Quality Assessment
For studies including the wider MS community, quality assessment scores ranged from
13 to 18 (Table 18.4), suggesting reasonable study quality. All of the studies reported
the study purpose and provided a relevant review of the literature. Two studies identi-
fied a theoretical perspective (Held Bradford et al. 2018; Learmonth et al. 2018a), and in
both cases this was social cognitive theory, based on the work of Bandura (2004). The
process of sampling was discussed in all studies, and sampling was continued until
redundancy in five studies (Anderson et al. 2017; Fakolade et al. 2018; Giunti et al. 2018;
Held Bradford et al. 2018; Learmonth et al. 2018a), and all studies reported receiving
participants consent for participation. In terms of data collection, no studies provided
a clear description of where the research took place, although one study described
telephone interviews (Held Bradford et al. 2018). Six studies gave clear and complete
descriptions of the participants (Smith et al. 2013a; Forsberg et al. 2015; Horton et al.
2015; Fakolade et al. 2018; Held Bradford et al. 2018; Learmonth et al. 2018a), and, in one
study, authors provided a clear description of the researchers credentials (Learmonth
et al. 2018a). Only one study provided a clear and complete description of the rela-
tionship between researchers and participants (Fakolade et al. 2018), no study clearly
provided researchers assumptions, and procedural rigour was described in all except
one study (Giunti et al. 2018).
For data analysis, all studies used inductive analysis, and all studies’ findings reflected
the data. Most studies (Smith et al. 2013a; Toomey and Coote 2013; Forsberg et al. 2015;
Fakolade et al. 2018; Giunti et al. 2018; Held Bradford et al. 2018; Learmonth et al. 2018a)
reported following a decision trail to analyse data, all studies described their process for
transforming data into themes, and all studies resulted in a meaningful picture of the
topic of interest. To ensure trustworthiness in the data, all studies reported triangulation
of sources and methods, and five studies reported triangulation of researchers (Smith
et al. 2013a; Toomey and Coote 2013; Fakolade et al. 2018; Giunti et al. 2018; Learmonth
et al. 2018a), no study used triangulation of theories, and member checking was used to
verify findings in five studies (Forsberg et al. 2015; Horton et al. 2015; Fakolade et al. 2018;
Held Bradford et al. 2018; Learmonth et al. 2018a). In relation to conclusions, all studies
reported appropriate conclusions which are relevant to clinical and research practice for
MS care, however, one study (Thomas et al. 2017) provided limited qualitative results
(as part of results for a feasibility trial) and therefore full conclusions could not be made
at this time.
Multiple Sclerosis 339

Appraisal of Studies
In relation to the conclusions from the papers, it is noteworthy to comment upon the gen-
eral aims of studies, their main findings and conclusions are listed in Table 18.4. There
were two main subthemes within the theme of the wider MS community, and these com-
prised opinions from (1) healthcare and fitness professionals and (2) carers.

Healthcare and Fitness Professionals

The one study which explicitly gathered opinions from (fitness facility) managers
(Anderson et al. 2017) aimed to identify barriers to persons with neurological conditions
(including MS) towards accessing exercise, and the researchers concluded that specially
trained exercise staff and training of fitness professionals in this area is a priority. Studies
of healthcare professionals (Smith et al. 2013a; Toomey and Coote 2013; Giunti et al. 2018;
Held Bradford et al. 2018; Learmonth et al. 2018a) have mainly aimed to understand the
experiences of healthcare providers delivering a specific physiotherapy or exercise inter-
vention to persons with MS (Smith et al. 2013a; Toomey and Coote 2013; Giunti et al. 2018;
Held Bradford et al. 2018), and these studies conclude the patient provider relationship is
critical for success in exercise interventions, and that creativity is required by clinicians
to deliver interventions which address patients’ needs. One study (Learmonth et al. 2018a)
had a wider aim to explore the needs of healthcare providers for promoting exercise, the
authors concluded that the patient provider role is critical, but that healthcare providers
require specific training to provide tools and strategies for increased exercise promotion
in patients with MS.

The healthcare system, the healthcare team, and the clinical appointment represent
opportunities for the promotion of exercise behaviour among persons with MS. We
further identified that such opportunities require education of healthcare provid-
ers and the development and provision of tools and strategies for behaviour change.
(Learmonth et al. 2018a)

Opinions from Carers

Two studies gathered views of carers, one study highlighted the importance of inte-
grating an exercise approach which is relevant to both the person with MS and carer
(Fakolade et al. 2018), whilst in the other study, the carers spoke of the many far reaching
benefits they noted from participation in exercise by the person with MS whom they
cared for (Horton et al. 2015). These studies indicate that carers are aware of changing
behaviours (i.e., participation in physical activity and exercise), and both studies identify
that both the carer and person with MS might work together learn about the importance
of physical activity and exercise. These studies highlight the importance of healthcare
providers to educate both the person with MS and the carer of physical activity and
exercise.

Participants shared their experiences with finding other options or modifying exist-
ing types of activities so they could continue being active [together, both person with
MS and carer]. Throughout this process, people with Multiple Sclerosis (PwMS) also
reported working collaboratively with their family caregivers to problem-solve and
identify ways to ensure continuous participation in physical activity (PA). (Fakolade
et al. 2018).
340 Enhancing Healthcare and Rehabilitation

Summary
Taken together, the opinions of the wider MS community suggest that there is an impor-
tant relationship between healthcare professionals and persons with MS, and this rela-
tionship offers an opportunity to better understand the exercise behaviours of persons
with MS and to promote exercise overall. The research also suggests that training may
be required for healthcare and fitness professionals involved in the MS community, it is
important that there are professionals available to persons with MS who are knowledge-
able in both exercise and MS. Finally, it is important that the role of the carer in the MS
community is addressed and provided with a greater voice in research, as carers play a
pivotal role in the health behaviours of persons with MS.

Theme 2: Opinions on Exercise Associated with Exercise Interventions

‘I think the reasons (for exercising) are the same [as for everyone else], but I think now
because of this condition it’s much more valuable – the benefit is going to be much
greater. I know if I don’t exercise I’m just going to get worse and worse… got to do it
because I know I need to. I’ve got to do it today, tomorrow, and every day.’ Study partici-
pant with MS (Kasser 2009)

For over 25 years, researchers have been establishing the effect of exercise and physical
activity during research-focused exercise interventions (Kinnett-Hopkins et al. 2017a).
This offers a good opportunity to gather opinions from these research participants. Many
studies have gathered opinions of persons with MS who are involved in an exercise or
physical activity intervention associated with the research team.
Opinions from some 570 persons with MS reported in 26 studies (Dodd et al. 2006;
Kasser 2009; Smith et al. 2009, 2011, 2013b; Aubrey and Demain 2012; Learmonth et al. 2013;
Mulligan et al. 2013; Normann et al. 2013; Kersten et al. 2014, 2015; Paul et al. 2014; Plow
and Finlayson 2014; Plow et al. 2014; Salminen et al. 2014; van der Linden et al. 2014; Clarke
and Coote 2015; Forsberg et al. 2015; Casey et al. 2016; Palacios-Ceña et al. 2016; Chard 2017;
Crank et al. 2017; Dixon-Ibarra et al. 2017; Thomas et al. 2017; Giunti et al. 2018; Learmonth
et al. 2018b) are included. It is notable that data gathered during these studies would also
be applicable to other topics discussed in this chapter. Equally, there are studies which will
be discussed elsewhere that recruited persons with MS for an exercise or physical activity
intervention, but subsequent qualitative publications had an aim which was not to gener-
ate opinions on the intervention, and these studies will be highlighted appropriately.
The research was conducted globally by several groups of researchers in North America
(Kasser 2009; Plow and Finlayson 2014; Plow et al. 2014; Chard 2017; Dixon-Ibarra et al.
2017; Learmonth et al. 2018b), Europe (Aubrey and Demain 2012; Normann et al. 2013;
Kersten et al. 2014; Paul et al. 2014; Salminen et al. 2014; van der Linden et al. 2014; Clarke
and Coote 2015; Forsberg et al. 2015; Casey et al. 2016; Palacios-Ceña et al. 2016; Crank et al.
2017; Thomas et al. 2017; Giunti et al.2018), and Oceania (Dodd et al. 2006; Smith et al. 2009,
2011, 2013b; Mulligan et al. 2013; Kersten et al. 2015). Studies were conducted between 2006
and 2018. All of the studies were primarily qualitative in method and gathered data via
interviews or focus groups. Table 18.4 provides study information, participant informa-
tion, associated information, quality score, main thematic findings, and a summary of the
authors main conclusions or relevant points.
Multiple Sclerosis 341

To recruit participants for studies, the most common recruitment process was conve-
nience sampling used by 15 research teams (Dodd et al. 2006; Smith et al.2009, 2013b;
Aubrey and Demain 2012; Learmonth et al. 2013; Mulligan et al. 2013; Kersten et al. 2014,
2015; Paul et al. 2014; Plow et al. 2014; Salminen et al. 2014; Clarke and Coote 2015; Forsberg
et al. 2015; Casey et al. 2016; Palacios-Ceña et al. 2016; Chard 2017; Dixon-Ibarra et al. 2017;
Learmonth et al. 2018b), other sampling approaches included purposive sampling (Smith
et al. 2011; Normann et al. 2013; Thomas et al. 2017), purposive-convenience (Kasser 2009;
Crank et al. 2017), and purposeful (Plow and Finlayson 2014; van der Linden et al. 2014;
Giunti et al. 2018). Data were collected via one-to-one interviews in 12 studies (Dodd
et al. 2006; Kasser 2009; Smith et al. 2009; Aubrey and Demain 2012; Mulligan et al. 2013;
Normann et al. 2013; Kersten et al. 2014; Paul et al. 2014; Plow and Finlayson 2014; Plow
et al. 2014; van der Linden et al. 2014; Palacios-Ceña et al. 2016), with some groups adopting
telephone interviews for some of their participants (van der Linden et al. 2014; Chard 2017;
Thomas et al. 2017; Learmonth et al. 2018b). Research groups also conducted focus groups
(Learmonth et al. 2013; Clarke and Coote 2015; Dixon-Ibarra et al. 2017) or a combination
of focus groups and interviews (Smith et al. 2011, 2013b; Salminen et al. 2014; Forsberg
et al. 2015; Kersten et al. 2015; Casey et al. 2016; Crank et al. 2017) to gather data from par-
ticipants. Most studies described using a content or thematic analysis except for one study
which used a framework analysis (Crank et al. 2017) and another study which described
using an issue-focused analysis approach.

Participants
570 persons with MS took part in the interviews or focus groups. Demographic and clinical
data were not always reported for participants and reported data can be seen in Table 18.4.
For the 466 persons for whom age was reported, mean age of participants was 50 years,
and of the 536 people for whom sex was reported, 408 (~75%) participants were female.
Some studies reported time since diagnoses, type of MS, disability level (most commonly
expressed via the Expanded Disability Status Scale [EDSS] [Kurtzke 1983] or the self-
reported EDSS (Ratzker et al. 1997]), and race. Of the 159 persons for whom mean time
since diagnosis was recorded, this was 11.6 years, and of the of 379 persons for whom type
of MS was reported, 220 had relapsing remitting MS, 41 had primary progressive MS, and
68 had secondary progressive MS. Of the 196 participants for whom EDSS was reported,
the mean EDSS was 4.5, and disability was more generally described for 95 participants
in studies, with 18 having no disability, 27 mild disability, 52 medium disability, and 55
high levels of disability. Two studies reported race where 40 participants were white and
15 were black.

Quality Assessment
For studies undertaken related to an exercise or physical activity intervention, quality
assessment scores ranged from 11 to 20 (Table 18.4), suggesting a fairly wide range of qual-
ity. All of the studies reported the study purpose and provided a relevant review of the
literature.
Four studies identified a theoretical perspective (Kasser 2009; Plow and Finlayson
2014; Thomas et al. 2017; Learmonth et al. 2018b), and these theoretical perspectives
were social cognitive theory (Kasser 2009; Thomas et al. 2017; Learmonth et al. 2018b)
342 Enhancing Healthcare and Rehabilitation

and the theory of occupational well-being (Plow et al. 2009). The process of sampling
was discussed in all studies, and sampling was continued until redundancy in 13
studies (Smith et al. 2011, 2013b; Aubrey and Demain 2012; Learmonth et al. 2013;
Normann et al. 2013; Kersten et al. 2014, 2015; Paul et al. 2014; Salminen et al. 2014; van
der Linden et al. 2014; Palacios-Ceña et al. 2016; Chard 2017; Thomas et al. 2017; Giunti
et al. 2018). Four studies did not clearly indicate that informed consent was taken from
participants (Kasser 2009; Plow et al. 2009; Mulligan et al. 2013; Plow and Finlayson
2014). In terms of data collection, six studies provided a clear description of where the
research took place (Dodd et al. 2006; Normann et al. 2013; Paul et al. 2014; Palacios-
Ceña et al. 2016; Thomas et al. 2017; Learmonth et al. 2018b). Almost all studies gave
a reasonably clear description of participants except for two studies (van der Linden
et al. 2014; Giunti et al. 2018), and in 11 studies authors provided a clear description
of the researchers credentials (Plow et al. 2009; Smith et al. 2009; Aubrey and Demain
2012; Learmonth et al. 2013; Normann et al. 2013; Salminen et al. 2014; van der Linden
et al. 2014; Kersten et al. 2015; Crank et al. 2017; Dixon-Ibarra et al. 2017; Learmonth
et al. 2018b). Nine studies provided a clear and complete description of the relationship
between researchers and participants (Dodd et al. 2006; Kasser 2009; Smith et al. 2011;
Learmonth et al. 2013; Normann et al. 2013; Paul et al. 2014; van der Linden et al. 2014;
Clarke and Coote 2015; Learmonth et al. 2018b), no study clearly provided researchers
assumptions. Procedural rigour was described in 16 studies (Dodd et al. 2006; Kasser
2009; Plow et al. 2009; Aubrey and Demain 2012; Learmonth et al. 2013; Mulligan
et al. 2013; Normann et al. 2013; Smith et al. 2013b; Kersten et al. 2014, 2015; Plow and
Finlayson 2014; Salminen et al. 2014; Clarke and Coote 2015; Forsberg et al. 2015; Casey
et al. 2016; Learmonth et al. 2018b).
For data analysis, almost all studies stated used inductive analysis except for three
(Kasser 2009; Normann et al. 2013; Paul et al. 2014), all studies’ findings reflected the
data. Some of the studies (Smith et al. 2009; Normann et al. 2013; Plow and Finlayson
2014; Salminen et al. 2014; van der Linden et al. 2014; Clarke and Coote 2015; Forsberg
et al. 2015; Casey et al. 2016; Crank et al. 2017; Dixon-Ibarra et al. 2017; Giunti et al. 2018;
Learmonth et al. 2018b) reported following a decision trail to analyse data, most stud-
ies clearly indicated the process used for transforming data into themes except for five
studies (Dodd et al. 2006; Kersten et al. 2014, 2015; Paul et al. 2014; Plow and Finlayson
2014), and all studies resulted in a meaningful picture of the topic of interest. To ensure
trustworthiness in the data, nine studies reported triangulation of sources and meth-
ods (Smith et al. 2009, 2011, 2013b; Aubrey and Demain 2012; van der Linden et al. 2014;
Forsberg et al. 2015; Dixon-Ibarra et al. 2017; Giunti et al. 2018; Learmonth et al. 2018b),
and 14 studies reported triangulation of researchers (Dodd et al. 2006; Kasser 2009;
Smith et al. 2009; Normann et al. 2013; Kersten et al. 2014, 2015; Paul et al. 2014; Plow
and Finlayson 2014; Forsberg et al. 2015; Casey et al. 2016; Crank et al. 2017; Dixon-Ibarra
et al. 2017; Giunti et al. 2018; Learmonth et al. 2018b), no study reported triangulation of
theories, member checking was used to verify findings in nine studies (Dodd et al. 2006;
Kasser 2009; Smith et al. 2011; Aubrey and Demain 2012; Normann et al. 2013; Kersten
et al. 2014; Casey et al. 2016; Crank et al. 2017; Dixon-Ibarra et al. 2017). In relation to con-
clusions, all studies reported appropriate conclusions which are relevant to clinical and
research practice for MS care, one study, which provided results of both quantitative and
qualitative outcomes, indicated further reporting of in-depth qualitative data will occur
in the future (Thomas et al. 2017).
Multiple Sclerosis 343

Appraisal of Studies
The main findings and conclusion from the studies related to opinions on exercise associ-
ated with exercise interventions are listed in Table 18.4. There were three main subthemes
within this these, and these comprised opinions on: (1) group-based exercise interven-
tions, (2) home- and individual-based exercise interventions, and (3) interventions and
new technology.

Group-Based Exercise Interventions

Interventions which participants with MS have included community group classes
(Aubrey and Demain 2012; Learmonth et al. 2013; Smith et al. 2013a; Salminen et al.
2014; van der Linden et al. 2014; Clarke and Coote 2015; Chard 2017; Dixon-Ibarra et al.
2017), and perhaps the strongest conclusions from these studies suggested that partici-
pants experienced many physical and psychological benefits, with most participants
enjoying the social aspect of community group classes. Similar reports were heard
from participants who took part in group-based exercise where the setting was in uni-
versity or clinic settings (Dodd et al. 2006; Kasser 2009; Giunti et al. 2018). For example,
participants perceived that the group settings were good for peer support and were
an important factor in participants completing their exercise programme. However,
participants occasionally commented that group exercise didn’t allow for 1:1 instruc-
tion or a personalised exercise plan, and therefore some participants may have also
liked to have individualised exercises based on their personal needs alongside group
activities.

Many participants described the exercise groups as generating a sense of

camaraderie. They viewed this as instrumental in fostering a positive attitude
towards managing their MS. On the negative side, several of the more able mem-
bers explicitly stated the MS group exercise was not intense enough for them. It
was also suggested that the routines should be varied to keep people’s attention
(Aubrey and Demain 2012).

Studies also reported that there were numerous knowledge gains, and physical and psy-
chological benefits perceived by participants from taking part in a group exercise interven-
tion, and these were summarised in many studies, for example, (Dodd et al. 2006; Kasser
2009; Learmonth et al. 2013; van der Linden et al. 2014; Clarke and Coote 2015) and are
depicted in Figure 18.2.
The importance of group exercise is perhaps clarified best from qualitative research. The
voices of participants speak of the peer support, knowledge gained, and other psychologi-
cal and physical benefits of group exercise. These opinions further suggest that the true
value of a whole intervention is greater than the sum of its parts (i.e., the prescribed exer-
cises, the social interaction, and the knowledge gains).

Home- and Individual-Based Exercise Interventions

Home-based, or exercises chosen by participants to be completed unsupervised and indi-

vidually in a home or community setting, are also popular in the literature (Plow et al.
2009; Smith et al. 2009, 2011; Mulligan et al. 2013; Kersten et al. 2014, 2015; Paul et al. 2014;
344 Enhancing Healthcare and Rehabilitation

Psychological
Cognitive clarity
Group ccamaraderie/energy
Social interactions/vicarious experience
Empowerment/self-eficacy
Conidence
Hope
Achievement
Enjoyment

Physical
Energy levels/improved
Knowledge
fatigue
From instructor
Flexibility
From experiencing exercise
Functional ability
From other participants
Strength
Endurance

FIGURE 18.2
Perceived benefits from participation in exercise interventions.

Plow and Finlayson 2014; Forsberg et al. 2015; Palacios-Ceña et al. 2016; Crank et al. 2017;
Thomas et al. 2017; Learmonth et al. 2018b). These exercise programmes were researcher-
or physiotherapist-led in-person delivered (Smith et al. 2009, 2011; Mulligan et al. 2013;
Kersten et al. 2014, 2015; Crank et al. 2017), delivered via phone or video calls, or deliv-
ered via mail-outs from researchers (Plow et al. 2009; Learmonth et al. 2018b). From these
studies, the importance of the relationship between the exercise provider and the client is
wanted. For example, the exercise provider provides an appropriate interactive informa-
tion source, motivation, and social support. In Chard et al.’s study (Chard 2017), partici-
pant satisfaction with the exercise programme was heavily influenced by their relationship
with the instructor:
They described their satisfaction as stemming from having a ‘good’ instructor, i.e.,
someone who was appropriately enthusiastic, inclusive, and able to offer exercise modi-
fications to accommodate ability level (Chard 2017).

Thus, the importance of the relationship between the healthcare provider and person with
MS is underscored once again. The importance of this provider-patient relationship is also
evident from negative narratives by participants. For example, poor instruction from exer-
cise providers may results in attrition from exercise. In one study, participants narrative
Multiple Sclerosis 345

indicates the importance of instructor knowledge on MS symptoms (Aubrey and Demain

2012), and this theme was echoed in a number of studies:
It was important to participants that the physiotherapist was specialised in neurology
and had an appreciation of the range of symptoms PwMS may present with and how
to prescribe exercises for this group. In other examples of exercise prescription, partici-
pants had negative experiences that they attributed to the lack of the instructors’ knowl-
edge about MS, inadequate levels of supervision, and exercise programmes which were
too difficult (Aubrey and Demain 2012).

One study has determined participants opinion of a home-based intervention which was
based on the current physical activity guidelines for persons with MS (Learmonth et al.
2018b). These guidelines involve two 30 minute sessions of aerobic exercise and two ses-
sions of resistance exercises per week. The study participants found the guidelines to be
appropriate for themselves and perceived that they were appropriate for others with MS.
The participants noted that they would like to see a variety of exercise options to meet
these physical activity guidelines.

Interventions and New Technology

Website and online interventions designed for research purposes are growing in pop-
ularity, and to date one study has reported qualitative findings from a website hosted
intervention (Paul et al. 2014), and a more recent study has gathered participants opin-
ions on what their preferred content would be for a specific website and online interven-
tion (Casey et al. 2016). Comments from participants indicate that online web-based and
mobile health technology to encourage exercise should be convenient, customisable to
the participants needs, and motivating. A sociability aspect was also deemed important,
and it would seem that participants would like access to knowledge from healthcare pro-
viders and access to peer support from other persons with MS who were also using the
programme.
Participants explained how the web resource might build a sense of community and
peer support amongst users. Also, for those not actively involved in their local or
regional MS Society’s, that the website could act as a bridge to contact other PwMS
(Casey et al. 2016).

Studies have also gathered qualitative data from participants who completed computer
console-based exercise programmes, known as exergaming (Plow and Finlayson 2014;
Forsberg et al. 2015; Palacios-Ceña et al. 2016; Thomas et al. 2017). The novelty of exercis-
ing using a computer game was clear in all studies, further, some participants found that
the exercise regime was in line with their own goals (Plow and Finlayson 2014). However,
it was not clear if this form of intervention was suitable to all participants, as in most
cases, participants indicated that they would have preferred a more individualised exer-
cise programme.
In contrast to some participants thinking it was too difficult to use or that the board
was too small, others felt it was not enough of a challenge, as they were not getting a
workout (Plow and Finlayson 2014).

Many of the benefits described by participants in the group-based interventions (Figure 18.2)
were similar for those in the individual interventions, in particular the physical benefits.
However, the psychological benefits related to group camaraderie and social interaction were
not discussed by participants who had less outside interaction with others who had MS.
346 Enhancing Healthcare and Rehabilitation

To some extent, participants told researchers that they preferred a bespoke exercise
programme, and this translated to needing an exercise programme appropriate for their
personal interests, fitness or exercise experiences, and disabilities.

Summary
The views of participants who have told researchers about their experiences with exer-
cise interventions have all generally been positive. There was much benefit from both
group and individual exercise interventions, and these included discussions and com-
ments on the physical and psychological benefits and increased knowledge. The impor-
tance of social interaction was also evident, with participants telling researchers of
the pleasure of interacting with other people, whether this be with other persons with
MS taking part in a group exercise programme or interacting with exercise leaders or
coaches who were most commonly healthcare professionals. Future research should aim
to harness some of these psychosocial benefits by perhaps including a social component
in the design of exercise interventions. It is important to highlight that individual and
home-based exercise is accepted by persons with MS, and that they particularly liked
the perceived individual approach, and this too should be harnessed in future research
where programmes designed for personal interest and ability might offer good accep-
tance and clinical applicability. Furthermore, there is evidence indicating that persons
with MS accept the current physical activity guidelines for persons with MS (Latimer-
Cheung et al. 2013a).

Theme 3: Moving When You Have MS

Individuals specifically described fear of future impairment/disability as motivation for
engaging in exercise with the negative impact on body image during the acute relapse
feeding that fear. ‘Move it or lose it’ was a commonly used expression to describe moti-
vations for exercising in the context of disability (Adamson et al. 2018).

The relationship between the person with MS and exercise is discussed in this theme
entitled balancing MS and exercise. Despite the many known benefits of exercise and physi-
cal activity in persons with MS, persons with MS are still physically inactive in compari-
son with the general population (Kinnett-Hopkins et al. 2017a). Our theme on opinions on
exercise associated with interventions addressed that persons with MS who engage in exercise
and physical activity experience and perceive the many benefits, yet, in general, many are
not physical active. In this final theme, we discuss the relationship which persons with MS
have with exercise, and, in particular, their motivations towards exercise and adherence
towards exercise.
There is overlap between this theme and the theme opinions on exercise associated with
interventions, and therefore some studies are discussed in both sections. Taking this into
consideration, there are opinions from some 532 persons with MS, and these are described
over 34 different studies.
The research was discussed globally and by several groups of researchers, research was
conducted in North America (Kasser 2009; Schneider and Young 2010; Brown et al. 2012;
Multiple Sclerosis 347

Dlugonski et al. 2012; Giacobbi et al. 2012; Horton et al. 2015; Learmonth et al. 2015, 2017a,
2017b, 2018b; Chiu et al. 2016; Hundza et al. 2016; Chard 2017; Dixon-Ibarra et al. 2017;
Kinnett-Hopkins et al. 2017b; Ploughman 2017; Adamson et al. 2018; Fakolade et al. 2018;
Fasczewski et al. 2018; Held Bradford et al. 2018), Europe (Borkoles et al. 2008; Elsworth
et al. 2009; Kersten et al. 2014; Crank et al. 2017; Giunti et al. 2018), and Oceania (Kayes
et al. 2011; Smith et al. 2011, 2013b, 2015; Hall-McMaster et al. 2016a, 2016b).
All of the studies were primarily qualitative in method and gathered data via interviews
or focus groups. Table 18.4 provides study information, participant information, associ-
ated information, quality score, main thematic findings, and a summary of the authors
main conclusions or relevant points.
To recruit participants, studies used convenience sampling (Brown et al. 2012; Giacobbi
et al. 2012; Mulligan et al. 2013; Kersten et al. 2014; Horton et al. 2015; Hall-McMaster et al.
2016a, 2016b; Chard 2017; Dixon-Ibarra et al. 2017; Learmonth et al. 2017a, 2018b; Fasczewski
et al. 2018), purposive sampling (Smith et al. 2011), purposive-convenience sampling (Kasser
2009; Crank et al. 2017), and purposeful sampling (Borkoles et al. 2008; Elsworth et al.
2009; Schneider and Young 2010; Kayes et al. 2011; Dlugonski et al. 2012; Sweet et al. 2013;
VanRuymbeke and Schneider 2013; Learmonth et al. 2015, 2017b; Smith et al. 2015; Chiu
et al. 2016; Hundza et al. 2016; Kinnett-Hopkins et al. 2017b; Ploughman 2017; Adamson
et al. 2018; Fakolade et al. 2018; Giunti et al. 2018; Held Bradford et al. 2018). Data were col-
lected via one-to-one interviews in 20 studies (Borkoles et al. 2008; Elsworth et al. 2009;
Kasser 2009; Schneider and Young 2010; Kayes et al. 2011; Smith et al. 2011, 2015; Dlugonski
et al. 2012; Mulligan et al. 2013; VanRuymbeke and Schneider 2013; Horton et al. 2015;
Learmonth et al. 2015, 2017a, 2017b; Hall-McMaster et al. 2016a, 2016b; Hundza et al. 2016;
Kinnett-Hopkins et al. 2017b; Ploughman 2017; Adamson et al. 2018), with some research
groups adopting telephone interviews for some of their participants (Giacobbi et al. 2012;
Chard 2017; Fasczewski et al. 2018; Held Bradford et al. 2018; Learmonth et al. 2018b).
Research groups also conducted focus groups (Brown et al. 2012; Dixon-Ibarra et al. 2017;
Fakolade et al. 2018) or a combination of focus groups and interviews (Smith et al. 2013b;
Sweet et al. 2013; Chiu et al. 2016; Crank et al. 2017) to gather data from participants. Most
studies described using a content or content led thematic analysis, although two studies
described using interpretative phenomenological analysis (Borkoles et al. 2008; Adamson et al.
2018), with other studies using semantic coding (Chiu et al. 2016), framework analysis (Crank
et al. 2017), or grounded theory (Kayes et al. 2011).

Participants
532 persons with MS took part in the interviews or focus groups. Demographic and clinical
data were not always reported for participants and reported data can be seen in Table 18.4.
For the 441 persons for whom age was reported, mean age of participants was 52.3 years,
and of the 525 people for whom sex was reported, 400 (~75%) participants were female.
Some studies reported time since diagnoses, type of MS, disability level (most commonly
expressed via the EDSS or the self-reported EDSS and race). Of the 163 persons for whom
mean time since diagnosis was recorded, this was 13.3 years, and of the of 361 persons for
whom type of MS was reported, 228 had relapsing remitting MS, 70 had primary progres-
sive MS, and 67 had secondary progressive MS. Of the 163 participants for whom EDSS
was reported (some studies reported mean EDSS, some range of EDSS), the mean EDSS
was 4.1, with EDSS between 1 and 6.5 and disability was more generally described for 227
participants in studies with 4 having no disability, 77 mild disability, 51 medium disabil-
ity, and 26 high levels of disability.
348 Enhancing Healthcare and Rehabilitation

Quality
For studies undertaken related to an exercise or physical activity intervention, quality
assessment scores ranged from 10 to 20 (Table 18.4), suggesting a fairly wide range of qual-
ity. All of the studies reported the study purpose and provided a relevant review of the
literature.
Thirteen studies identified a theoretical perspective (Elsworth et al. 2009; Kasser 2009;
Brown et al. 2012; Dlugonski et al. 2012; Giacobbi et al. 2012; Smith et al. 2013b; Sweet et al.
2013; Chiu et al. 2016; Dixon-Ibarra et al. 2017; Learmonth et al. 2017a, 2018b; Fasczewski
et al. 2018; Held Bradford et al. 2018), and these theoretical perspectives were social cogni-
tive theory (Kasser 2009; Dlugonski et al. 2012; Dixon-Ibarra et al. 2017; Learmonth et al.
2017a, 2018b; Held Bradford et al. 2018), the Health Action Process Approach (Chiu et al.
2016), the health implementation model (Elsworth et al. 2009), Self-determination Theory
(Fasczewski et al. 2018), Transtheoretical Model of Behaviour Change (Smith et al. 2013b),
the people with disability model (Giacobbi et al. 2012), and the Comprehensive Model of
Information Seeking (Sweet et al. 2013). The process of sampling was discussed in all stud-
ies, and sampling was continued until redundancy in nine studies (Schneider and Young
2010; Learmonth et al. 2015, 2017a, 2017b; Chiu et al. 2016; Chard 2017; Ploughman 2017;
Giunti et al. 2018; Held Bradford et al. 2018). Seven studies did not clearly indicate that
informed consent was taken from participants (Elsworth et al. 2009; Kasser 2009; Schneider
and Young 2010; Mulligan et al. 2013; Smith et al. 2015; Hall-McMaster et al. 2016b; Dixon-
Ibarra et al. 2017). In terms of data collection, seven studies provided a clear description of
where the research took place (Elsworth et al. 2009; Giacobbi et al. 2012; Learmonth et al.
2015, 2017a, 2018b; Dixon-Ibarra et al. 2017; Kinnett-Hopkins et al. 2017b). Almost all stud-
ies gave a reasonably clear description of participants except for three studies (Elsworth
et al. 2009; Hall-McMaster et al. 2016b; Giunti et al. 2018), and in nine studies, authors pro-
vided a clear description of the researchers credentials (Smith et al. 2009; Learmonth et al.
2015, 2017a, 2017b, 2018b; Crank et al. 2017; Dixon-Ibarra et al. 2017; Kinnett-Hopkins et al.
2017b; Adamson et al. 2018). Six studies provided a clear and complete description of the
relationship between researchers and participants (Kasser 2009; Smith et al. 2011; Giacobbi
et al. 2012; Adamson et al. 2018; Fakolade et al. 2018; Learmonth et al. 2018b), and five
studies clearly provided researchers assumptions (Kasser 2009; Smith et al. 2011; Kersten
et al. 2014; Dixon-Ibarra et al. 2017; Adamson et al. 2018; Fasczewski et al. 2018). Procedural
rigour was described in 14 studies (Dodd et al. 2006; Kasser 2009; Plow et al. 2009; Aubrey
and Demain 2012; Learmonth et al. 2013; Mulligan et al. 2013; Normann et al. 2013; Smith
et al. 2013b; Kersten et al. 2014; Plow and Finlayson 2014; Salminen et al. 2014; Clarke and
Coote 2015; Casey et al. 2016; Learmonth et al. 2018b).
For data analysis, almost all studies stated use of inductive analysis except for six
(Elsworth et al. 2009; Brown et al. 2012; VanRuymbeke and Schneider 2013; Crank et al.
2017; Dixon-Ibarra et al. 2017; Kinnett-Hopkins et al. 2017b), all studies’ findings reflected
the data. Twenty of the studies reported following a decision trail to analyse data
(Borkoles et al. 2008; Smith et al. 2011, 2013b, 2015; Dlugonski et al. 2012; Giacobbi et al.
2012; Learmonth et al. 2015, 2017b, 2018b; Chiu et al. 2016; Hall-McMaster et al. 2016b;
Hundza et al. 2016; Crank et al. 2017; Dixon-Ibarra et al. 2017; Ploughman 2017; Adamson
et al. 2018; Fakolade et al. 2018; Giunti et al. 2018; Held Bradford et al. 2018), most studies
clearly indicated the process used for transforming data into themes except for five studies
(Elsworth et al. 2009; VanRuymbeke and Schneider 2013; Kersten et al. 2014; Kinnett-
Hopkins et al. 2017b; Learmonth et al. 2017a), and all studies resulted in a meaningful
picture of the topic of interest. To ensure trustworthiness in the data, 13 studies reported
Multiple Sclerosis 349

triangulation of sources and methods (Elsworth et al. 2009; Schneider and Young 2010;
Smith et al. 2011; Dlugonski et al. 2012; Giacobbi et al. 2012; VanRuymbeke and Schneider
2013; Horton et al. 2015; Dixon-Ibarra et al. 2017; Adamson et al. 2018; Fakolade et al.
2018; Giunti et al. 2018; Held Bradford et al. 2018; Learmonth et al. 2018b), and most
studies clearly reported triangulation of researchers except for four studies (Kasser
2009; VanRuymbeke and Schneider 2013; Hall-McMaster et al. 2016b; Held Bradford et al.
2018), 11 studies showed apparent triangulation of theories (Elsworth et al. 2009; Kayes
et al. 2011; Brown et al. 2012; Dlugonski et al. 2012; Giacobbi et al. 2012; Smith et al. 2013b;
Horton et al. 2015; Learmonth et al. 2015; Chiu et al. 2016; Kinnett-Hopkins et al. 2017b;
Fasczewski et al. 2018; Held Bradford et al. 2018), member checking was used to verify
findings in 13 studies (Borkoles et al. 2008; Kasser 2009; Smith et al. 2011; Dlugonski et al.
2012; VanRuymbeke and Schneider 2013; Kersten et al. 2014; Horton et al. 2015; Chiu et al.
2016; Learmonth et al. 2017a, 2017b; Fakolade et al. 2018; Held Bradford et al. 2018). In
relation to conclusions, all studies reported appropriate conclusions which are relevant
to clinical and research practice for MS care.

Appraisal of Studies
The main findings and conclusion from the studies related to moving when you have MS
are listed in Table 18.4. Between studies there were four emerging themes and these were:
(1) balancing MS and exercise, (2) communication about exercise and physical activity,
(3) harnessing inner strategies, and (4) health and physical activity/exercise services.

Balancing MS and Exercise

Studies have gathered information about the important balance and sometimes tenta-
tive relationship with persons with MS with exercise. This has included studies gather-
ing data on the barriers to exercise and conflicting role exercise might play in persons
with MS.
Barriers perceived by persons with MS in relation to exercise have previously been
reported in review studies (Learmonth and Motl 2016; Ploughman 2017) (Table 18.3).
Where barriers were identified as including access to facilities, advice from healthcare
professionals, fatigue, and fear and apprehension, and more broadly in relation to the
participants impairment, attitude and knowledge. Authors have begun to identify that
where exercise is now considered beneficial and safe for persons with MS (Pilutti et al.
2014b), to some there is a tentative relationship beyond that of the identified barriers.
Adamson et al. (2018) reported on the perceptions of the impact of physical activity in
MS symptoms, relapse, and disability identity. These authors attempted to understand
the present exercise is medicine agenda from the viewpoint of the person with MS, and,
in doing so, capture the empowering role of exercise and the guilt related to exercise
(or lack thereof) when MS symptoms fluctuate such as during times of relapse. These
authors noted that their research participants felt the burden from healthcare profes-
sionals to follow an exercise prescription and when life prevented this, there were feel-
ings of guilt when unable to exercise and concerns may escalate to increased feelings of
depression.
Taking the barriers perceived by persons with MS and the tentative relationship some
persons with MS may have, the qualitative research indicates that although we must con-
tinue to promote exercise as an effective treatment in persons with MS, this must be done
in a manner respectful of each person’s unique circumstances.
350 Enhancing Healthcare and Rehabilitation

Communicating about Physical Activity and Exercise

The communication of physical activity and exercise to persons with MS is important.
Communication may come from external sources (such as healthcare professionals, sup-
port groups, or Internet websites). Further, knowledge of what persons with MS already
know about physical activity and exercise will help us better focus resources and interven-
tions on physical activity.
There is evidence from these studies that persons with MS may be unsatisfied with
the quality of the healthcare professional/patient relationship amongst persons with MS
(Learmonth et al. 2017a), and so it is important to establish the current relationship and
what aspects work well. There have been a number of studies that have considered the
role of exercise leaders and healthcare professionals. Themes of interest range from the
attitude of exercise facility staff (Brown et al. 2012), the importance of the carer (Horton
et al. 2015; Fakolade et al. 2018), and the role of the healthcare professional. When the role
of exercise leaders were a focus in studies (Brown et al. 2012; Learmonth et al. 2018b) staff
knowledge (on MS, or neurological conditions) and positive attitude were perceived as
important and thus must be considered when promoting exercise to persons with MS.
This is similar to what persons with MS who participated in an exercise intervention
told researchers about the exercise leaders (discussed in the theme on opinions on exercise
associated with interventions). When exercise leaders are knowledgeable about MS, and
have a positive attitude, they are important facilitators for persons with MS to exercise.
Carers have been discussed in two studies, and from these works it is apparent that the
carer might also need education and encouragement to promote (or undertake) physical
activity and exercise. It is also apparent that the importance of collaboration between the
carer and person with MS has a role in facilitating exercise, and there is a need for sup-
portive external resources (e.g., healthcare providers to inform and direct about exercise)
to guide the carer to encourage exercise.
The importance of the healthcare provider in the communication process regarding
physical activity and exercise for persons with MS is beginning to be perceived as an
important opportunity to change the behaviours of persons with MS. Researchers have
established the importance of healthcare providers, particularly physiotherapists, when
communicating, promoting, and prescribing exercise to persons with MS (Schneider and
Young 2010; Smith et al. 2011; Held Bradford et al. 2018). Learmonth et al. (2017a, 2017b) have
focused specifically on establishing from which healthcare providers, what type of infor-
mation from those healthcare providers, and what format of information from healthcare
providers persons with MS would like in relation to exercise promotion. They established
that persons with MS were not receiving clear promotion on exercise from all their health-
care providers, and this included not receiving exercise promotion from their main health
contact, their neurologist. Participants in this mid-United States-based study wanted to
receive promotion on exercise from healthcare providers, and they almost unanimously
wanted exercise to be promoted by their neurologist, as well as allied healthcare providers
(e.g., physiotherapists and psychologists).
The type of information and the delivery of exercise information has been established
(Sweet et al. 2013; Learmonth et al. 2017b), persons with MS want to receive exercise infor-
mation from knowledgeable professionals with knowledge on both exercise and MS, and
they want to receive this information via in-person consultations and reliable printed or
online resources which they would like healthcare providers to advise upon.
In relation to providing information on and communicating about exercise, the under-
standing of these terminologies by persons with MS was established by the same United
Multiple Sclerosis 351

States-based research group as discussed above (Kinnett-Hopkins et al. 2017b). The study
established that less than half of participants had a consistent understanding of what
physical activity is and what exercise is. It seemed that many of the participants defined
physical activity in a manner more akin to the correct description of exercise (i.e., ‘physical
activity was defined as a structured or directed behaviour, which aligns more closely with
the definition of exercise’) (Kinnett-Hopkins et al. 2017b). The use of consistent messages
about these terminologies is important when promoting physical activity and exercise
behaviours in persons with MS.

Harnessing Inner Strategies

There is evidence indicating that psychological constructs have an important role in the
exercise behaviour of persons with MS. For example, a review of the relevant literature
suggests that psychosocial factors such as self-efficacy, outcome expectations, and goal set-
ting are important strategies in facilitating positive changes in physical activity and exer-
cise behaviour in persons with MS (Motl et al. 2011; Carter et al. 2014; Pilutti et al. 2014a),
and that physical activity and exercise based on these constructs may increase overall
participation (Sangelaji et al. 2016). In quantitative research, there has been a strong focus
on the use of social cognitive theory (SCT) (Bandura 2004) to understand physical activ-
ity behaviours in MS, and this has also been the case in studies included in this review
(Plow et al. 2009; Dlugonski et al. 2012; Dixon-Ibarra et al. 2017; Learmonth et al. 2017a,
2018a, 2018b; Thomas et al. 2017; Held Bradford et al. 2018). Recent research indicates that
construct of SCT such as self-efficacy may have an important role in predicting physical
activity behaviour in MS, but there are many other factors not yet fully investigated which
may explain this behaviour.
Therefore it is important to acknowledge these psychological constructs in qualitative
research. Doing so might hold informative information on constructs and strategies to better
understand physical activity behaviour. To that end many of our included studies have
established sociopsychological factors which persons with MS perceive to facilitate exercise
(Kasser 2009; Dlugonski et al. 2012; VanRuymbeke and Schneider 2013; Chiu et al. 2016;
Hall-McMaster et al. 2016a, 2016b; Crank et al. 2017; Dixon-Ibarra et al. 2017; Fasczewski
et al. 2018). Two studies gathered participants views on the SCT constructs delivered in
their interventions (Dixon-Ibarra et al. 2017; Learmonth et al. 2018b). Participants liked
receiving knowledge about the consequences of, and the skills to complete, exercise (SCT
construct of outcome expectations and behavioural learning), learning to acknowledge
and overcome barriers, and use goal-setting techniques (SCT construct of self-efficacy),
and reading about (Learmonth et al. 2018b) or interacting with others with MS who are
participating in learning (SCT construct of vicarious learning). In other studies, participants
discussed the importance of exercise self-monitoring, but this should be considered within
the background of an external accountability source (e.g., a healthcare professional offering
guidance at designated times or when requested by either party), further education
on personal strengths, needs, and confidence capabilities with a focus on participants
establishing exercise they enjoy.

Health and Physical Activity/Exercise Services

Poor accessibility to health and physical activity services has been acknowledged in review
articles (Christensen et al. 2016; Learmonth and Motl 2016; Ploughman 2017) as important
barriers or facilitators to exercise. A lack of a necessary or desired service might present
a barrier to exercise, whilst availability of a service may act as a facilitator. Studies have
352 Enhancing Healthcare and Rehabilitation

heard from persons with MS that health and social services should be available that fit
an individual’s needs, and this might address disability, financial, social, and enjoyment
needs (Borkoles et al. 2008; Elsworth et al. 2009; Sweet et al. 2013; Hundza et al. 2016; Chard
2017; Learmonth et al. 2017a, 2018b; Ploughman 2017). Researchers heard that many per-
sons with MS do not necessarily have access to the physical activity and exercise support
which they need in their local communities, and that if this were in place they would par-
ticipate more (Borkoles et al. 2008; Chard 2017), further, researchers heard that participants
weren’t fully aware of what services were available to them in their own community, and
this presented a barrier to attendance (Learmonth et al. 2017a). Studies also identified that
persons with MS accept and use Internet/technology-based exercise programmes, and
this offers a good alternative to local exercise options (Learmonth et al. 2017a, 2018b).

Summary
This final theme aims to learn from participants what their motivations and barri-
ers towards exercise are, and what they currently have to act as exercise facilitators.
Researchers, healthcare providers, and the general community must acknowledge that
there is a careful balance to overcome for persons with MS, who want, in almost all cases,
to exercise. Exercise should be enjoyable and not thought upon as a burden. As was dis-
cussed in the theme on the wider MS community, healthcare professionals and researchers
play an important role in communicating the messages on physical activity and exercise
activity in MS. We must aim to arm persons with MS with the knowledge on exercise, the
skills to become motivated towards exercise, and finally access to physical activity and
exercise services which are appropriate for them.

Discussion
There has been an increase in qualitative research undertaken with persons with MS in
the last decade, and this has included a strong focus on physical activity and exercise par-
ticipation. Within this chapter, we established that a number of review articles have been
published based on qualitative work, and these reviews have focused upon some of the
barriers and facilitators persons with MS have in term of increasing physical activity and
participating in exercise (Christensen et al. 2016; Learmonth and Motl 2016; Ploughman
2017). In this chapter, we have expanded these reviews and added new themes not yet
fully summarised from the literature. We have focused on three main themes and these
are; the wider MS community, opinions of exercise associated with exercise interventions, and
moving when you have MS.
We have established that the whole MS community is supportive of exercise as a man-
agement strategy in MS care, and, further, that the whole MS community of healthcare
professionals and carers may play a pivotal role in MS care. Further, there is evidence
from included studies and other work that persons with MS are not fully satisfied with the
healthcare provider/patient relationship (Vickrey et al. 2000; Golla et al. 2001; Learmonth
et al. 2017a). Thus, there is a need to develop exercise services delivered within a health
setting for persons with MS. This is supported in quantitative research from various coun-
tries including America (Vickrey et al. 2000), Australia (McCabe et al. 2012), and the United
Kingdom (Somerset et al. 2001), and in this research, it was established that patients and
Multiple Sclerosis 353

persons with MS want to receive physical activity and exercise promotion via their local
healthcare system. The importance of the healthcare provider/patients relationship is fur-
ther evidenced from qualitative research which has focused more broadly in other neu-
rological conditions (Gladman et al. 2008) (including people with stroke, traumatic brain
injury, Parkinson’s disease, MS, and epilepsy) that exercise services should be provided
within the health setting. The evidence to date suggests that healthcare providers are
offering many physical activity and exercise programmes to research participants who
have MS (Ïyigün et al. 2010; Haselkorn et al. 2015; Campbell et al. 2016; Learmonth et al.
2016), however, despite the research into these programmes, there may be rationale to
increase awareness of promoting exercise amongst the wider MS community. Research
is continuing to build upon the work of Learmonth and colleagues (2018a, 2017a) in estab-
lishing the promotion of exercise in MS via healthcare providers (Motl et al. 2018) and
this work is developing conceptual models and driver diagrams to outline the next steps
in research to optimise the promotion of exercise in MS care via healthcare providers.
However, one important group which has not yet been asked about physical activity and
exercise services within MS healthcare are the healthcare managers and commissioners,
and these individuals may be the gatekeepers to unlocking more and better services. Thus,
it is important to continue qualitative work in this area to not only gather the views on the
person with MS, carers, and healthcare providers, but it is also important that we capture
the opinions of healthcare managers and commissioners who may hold pivotal informa-
tion to increase exercise promotion using this method.
The acceptance of exercise interventions which include group exercise classes and indi-
vidual exercise programmes, and when delivered in-person and via the use of technology
could be heard from the participants in the included studies. Reports from participants of
the perceived benefits related to physical and psychological benefits have previously been
established in quantitative research (Motl and Pilutti 2012; Latimer-Cheung et al. 2013b),
and the qualitative findings underscore the established benefits which include improve-
ments in aerobic and muscular fitness (Platta et al. 2016), fatigue (Pilutti et al. 2013), depres-
sion (Ensari et al. 2014; Adamson et al. 2015), walking (Pearson et al. 2015; Learmonth
et al. 2016), balance (Paltamaa et al. 2012), cognition (Sandroff et al. 2016), and QOL (Motl
and Gosney 2008). Furthermore, benefits may include improvements in CNS structure
(Sandroff et al. 2017), sleep quality (Pilutti et al. 2014a)(16), and cardiovascular health (Wens
et al. 2016) comorbidity (17,18). Exercise training has further been associated with reduced
relapse rate (Pilutti et al. 2014b) and slowed disability progression (Motl et al.2012)(20). With
the safety of exercise in MS being comparable to that of the general population (Pilutti et al.
2014b), the benefits established and the acceptance by persons with MS, then there seems
no strong argument against exercise and increase physical activity in the management of
persons with MS. In reviewing the opinions of persons with MS who have commented on
exercise interventions, we are unable to make clear recommendations. The acceptance of
the current physical activity guidelines for persons with MS (Latimer-Cheung et al. 2013a)
should be established in more groups of participants, and it will further be important to
include social interactions in interventions which should be grounded in exercise science
and theories of behaviour change.
Within this chapter, we further established the barriers which persons with MS have in
relation to physical activity and exercise, and the current findings are in line with previ-
ously published review studies (Learmonth and Motl 2016; Ploughman 2017). Common
barriers included access to facilities, advice from healthcare professionals, fatigue, fear
and apprehension, the participants impairment, attitude, and knowledge. This chapter
expands on previous work by further acknowledging that communication about exercise
354 Enhancing Healthcare and Rehabilitation

must be improved to educate participants on the benefits or exercise and the best exercise
for them. The important role of healthcare providers in this area has previously been dis-
cussed. Further, we acknowledge views of participants in relation to the use of harnessing
inner strength to overcome barriers to exercise. The inclusion of strategies to help partici-
pants help themselves should include constructs of social cognitive theory as views from
participants perceive their inclusion beneficial. Quantitative review indicates that inclu-
sion of behaviour change theory will be beneficial to the end goal of improving overall
exercise participation amongst persons with MS (Sangelaji et al. 2016).
In completing the systematic review for this review and content analysis, there are
some areas of qualitative methodology which could be improved in future qualitative
research. For example, studies should consistently report demographical and clinical data
of participants. In doing so, readers will better apply the findings to their area of interest.
Researchers should further adhere to qualitative methodology in, for example, reporting
of data saturation, reporting of researchers reflexivity, and clear reporting of analysis and
rigor.
There are some limitations associated with the review and discussion in this chapter.
For example, we only included studies published in English, thus views reported in stud-
ies published in a foreign language are not included. In the main, we included studies
which focused on physical activity and exercise, therefore we may not have captured stud-
ies where physical activity was discussed amongst a wider context of issues affecting per-
sons with MS. Effort was made to include all relevant studies, however, we may still have
failed to include all qualitative studies conducted amongst persons with MS and that met
our inclusion criteria.

Conclusion
This chapter focuses on the qualitative research which has been conducted in persons
with MS related to the topic of physical activity and exercise. Qualitative research seeks
to determine and understand the behaviours of the MS community in relation to exer-
cise and physical activity, and, in doing so, unlock missing information from quantitative
inquiry which researchers and clinicians can use to improve the content of exercise inter-
ventions. Studies which engage directly with the patient, carer, or healthcare team offer
opinions and expertise which cannot be gathered via quantitative research. Qualitative
research offers true consumer-based participatory research, and this should be used to
drive future research agendas.
We gather together views of over 1000 persons within the MS community and summarise
that we now know the importance of the promotion of exercise via the healthcare system,
the acceptance of exercise amongst persons with MS, and the common challenges persons
with MS experience in relation to exercise. Research undertaken over the last 25 years
highlights the importance of further encouraging persons with MS, and one important
area of encouragement is appropriate use of physical activity and exercise to manage their
health. The research gathered together in this chapter provides information on the lived
experiences of the MS community and provides new information about the importance of
the wider MS community and the power they (i.e., healthcare providers and carers) may
have at influencing change in the behaviours of persons with MS. Furthermore, we learn
from qualitative research what aspects of an exercise intervention engage persons with
Multiple Sclerosis 355

MS, and this can be used to establish what elements of the intervention might increase
retention. The views and opinions of the intervention participants further help us, as
researchers and healthcare providers, to know what barriers we should help persons with
MS overcome in relation to physical activity and exercise. Qualitative research in MS offers
much insight into the experiences of the MS community, and we must continue capturing
the views of the MS community to better future models of MS care.

Acknowledgements
I would like to thank Emily Stewart for her assistance in undertaking the literature search
and review of study quality.

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 Section III

Methodological Considerations
for Qualitative Researchers
19
Designing Qualitative Research to Have
an Impact on Healthcare from the Outset

Sally Thorne

CONTENTS
Introduction ................................................................................................................................. 365
What Is a ‘Disciplinary Lens’? ................................................................................................... 366
What Is a Disciplinary Lens in the Qualitative Health Research Context? ........................ 367
How Might a Disciplinary Lens Influence Identification of Researchable Problems?...... 369
How Could a Disciplinary Lens Shape the Components of Research Design? ................. 370
What Does the Disciplinary Lens Have to Do with Quality Criteria? ................................ 371
Can a Disciplinary Lens Pose Limitations? ............................................................................. 372
How Would Disciplinary Lens Work in the Interdisciplinary Context? ............................. 373
How Can We Design Qualitative Studies for Maximal Impact? .......................................... 374
Concluding Comments .............................................................................................................. 375
References .................................................................................................................................... 376

Introduction
Much as with nursing, rehabilitation exists as a distinct professional practice for the explicit
purpose of making a difference in the real world of people. Each of our applied practices
derives from an academic discipline that, whilst sharing a great deal of common scientific,
theoretical, and factual material with other disciplines, also represents a unique ‘angle of
vision’ on the problems of health and healthcare in our society. In each case, knowledge
generation traditions have evolved in order to advance the profession’s capacity for impact
on the health of people and populations and to bring a disciplinary perspective to the
wider arena of clinical wisdom.
Until the late 1970s, the common understanding of health research was generally lim-
ited to quantification and measurement. For some kinds of applied disciplinary questions,
the available scientific methods were reasonably adequate. However, in nursing, and ulti-
mately in rehabilitation as well, clinicians were often preoccupied with problems of a more
‘complex and messy’ nature that were not easily amenable to measurement and were curi-
ous about how the more subjective, experiential, and contextual factors that characterise
real world healthcare might be brought into the equation. I attribute nursing’s early entry
into qualitative inquiry to its philosophical commitment to particularising general knowl-
edge in the clinical context (Thorne & Sawatzky 2014) – applying a critically reflective lens
to all generalised knowledge so that the distinctive circumstances of each new patient or
family might be either integrated into or prioritised over standardised procedure. From
a social justice perspective, nursing was not only interested in what approaches to care

365
366 Enhancing Healthcare and Rehabilitation

might have proven effectiveness for the majority, but also in who might be disadvantaged
by those approaches, how we would anticipate or notice that, and what other consider-
ations might be applied to a decision as to whether and how to use them. This relentless
commitment towards individualised (or personalised) care meant that nursing was quite
hungry for alternative approaches to the available quantitative methods.
When nursing ‘discovered’ qualitative methods, it faced a considerable challenge in
arguing that they constituted a legitimate scientific approach. Biomedical science methods
were serving much of the spectrum of healthcare disciplines fairly well, and scholars in
many fields had found reasonable ways to work within the confines of measurement to
advance their understandings of human health experience and intervention towards opti-
mising health. To those with a conventional understanding of science, qualitative research
was a major departure, and not an easy fit within the spectrum of scholarly work. In an
attempt to confirm the credibility of these intriguing new approaches, nursing located
them within the domain of ‘social science’ and borrowed methodological technique from
that which had been developed in such fields as sociology and anthropology. Methods
such as phenomenology, grounded theory, and ethnography were popularised as health
research resources during those early years. Framing the work as established social sci-
ence technique helped position it with the biomedical science community as a legitimate
practice, but brought with it a new problem in trying to adhere to the disciplinary rule
structures of the methodological traditions it was deploying.
Over time, a number of researchers in the applied health practice disciplines began to feel
overly constrained by the design conditions inherent in the available social science meth-
odological options. Paradoxically, they could follow what seemed to be good methodology
or they could do meaningful research, but not both at the same time (Chamberlain 2000).
When they prioritised careful conformity to some of the methodological expectations of
the social science traditions, they found that steered them towards generating findings
that only partially answered their own disciplinary research questions or produced what
we might call ‘bloodless findings’. Alternatively, when they creatively bent and adapted
those methodological traditions to align with the kind of knowledge their disciplinary
logic told them would best answer their research question in a manner that spoke to their
applied practice discipline, they risked censure from funding panels, manuscript review-
ers, and sectors within the health science community for supposed methodological infrac-
tions. Thus, as the philosophical thinkers within the applied disciplines were increasingly
appreciating the implications of complexity, the tenets of quality assessment were often
steering applied scholars in the direction of tight designs within well-established method.
In the context of these evolving conditions, I found myself amongst the members of the
qualitative health research community who were pushing at the edges of what consti-
tuted quality criteria in applied health research and came to appreciate how differently
the social and applied sciences engage with their understanding of the world and what
constitutes relevant, meaningful work – or ‘good science’.

What Is a ‘Disciplinary Lens’?

The term ‘disciplinary lens’ refers to the fundamental values, beliefs, and assumptions
that underpin our understanding of how the world works according to the knowl-
edge structure of our various health professions – the kind of material that might be
Designing Qualitative Research to Have an Impact on Healthcare from the Outset 367

contained in the typical academic course on ‘theoretical foundations of …’ nursing,

physical therapy, medicine, social work, and so on. We all learned these ideas as an
inherent part of our socialisation into the applied professional discipline we represent,
and they were reinforced throughout our enculturation into professional practice stan-
dards and ideals. For most of us, they become second nature and, as we carry them
into the world of our practice, we extend, diversify, and expand on them so that they
reside somewhere in the background, rather than necessarily at the foreground of our
everyday practice world. They become the self-evident ideas upon which we are trying
to build an increasing understanding of how to do the thing we do better for the benefit
of those we serve.
In modern times, as we have come to recognise the disciplinary cultural barriers to
team-based healthcare, we have seen considerable focus placed on interdisciplinarity and
striving to practice in an interprofessional manner. Across many of our care institutions,
there have been conscious attempts to break down the disciplinary infrastructures of our
practice settings so as to incentivise better teamwork and discourage intra-professional
siloing. Although the academic world has retained a structure characterised by disciplin-
ary distinctions, there is widespread interest in expanding our curricula towards increas-
ing levels of interprofessional learning amongst the healthcare disciplines who will be
working together in the practice fields. Further, in the research context, we are increasingly
prioritising interdisciplinary research as a preferred approach to addressing the complex
challenges of healthcare. Thus, we might argue that a wider environment in healthcare
education and practice seems increasingly to be silencing the voice of our distinctive
disciplines.

What Is a Disciplinary Lens in the Qualitative Health Research Context?

In the expanding industry of health research, our knowledge generation traditions
evolved within the philosophical aspirations of the distinct disciplines. Researchers
within the applied health practice disciplines (i.e., the health professions) understand
themselves not simply as technicians of health science, but as professionals who have
expanded their practice to engage in addressing the knowledge challenges that face their
discipline. Thus, in an increasingly interdisciplinary world of practice and research, it
becomes important to reflect on what that means with respect to knowledge generation.
Top quality graduate (higher degree) programs within the health professional fields
often place considerable focus on the philosophical underpinnings of the discipline,
ensuring that those who go on to become health researchers are well grounded in that
disciplinary knowledge as they add on new skill sets in research technique. They engage
students in considering, from a disciplinary perspective, questions such as: How does
our discipline relate to the world of ideas? And what are the ideas that our discipline
stands for? What is the role of ideas in shaping the expectations, understandings, and
constraints upon our practices? And what does it mean to interpret quality claims within
our science?
Beyond the graduate seminar context, fringe conferences, and occasional discussion
papers in our scholarly journals, most health professionals rarely encounter occasions in
which they are explicitly called upon to critically reflect on the ideas underpinning their
disciplinary hardwiring. As a consequence, their capacity to call up and articulate their
368 Enhancing Healthcare and Rehabilitation

disciplinary lens can become somewhat elusive. They might ‘know’ that there is a differ-
ence in how they think in contrast to how their colleagues from other health disciplines
think, but find that the nature of that difference does not easily find its way into expres-
sion. It seems that we often forget the language of our differences in our attempt to bridge
the gaps in our interprofessional understanding. And this becomes important because it
helps explain why that disciplinary lens is so often ignored when we set down the ideas
upon which we will build our study design.
Interestingly, despite the extensive investment our educational programs makes in
socialising us to think like a member of our profession, the ideas we have been encour-
aged to take with us as intellectual scaffolding into our qualitative research studies are
those that are entirely theoretical. In the world of qualitative research, we seem to have
uncritically taken up the assumption that all studies must be grounded on an explicit ‘the-
oretical framework’, meaning that we name the theoretical lens we will be applying as we
enter into a study. A study that is ‘atheoretical’ is considered to be lacking an essential ele-
ment (Neergaard, Olesen, Andersen, & Sondergaard 2009). That theoretical framework is
expected to influence the way we position our research question, the design decisions we
make, often our sampling and data collection technique, perhaps the analytic framework
with which we display our data, and may even predetermine the kinds of interpretations
we will ultimately make on the basis of our findings. In other words, although the qualita-
tive health research community has taken up the assumption that a theoretical framework
is essential to the integrity of a qualitative study, it understands the role of that theoreti-
cal framework as being fulfilled by ideas that have been articulated by other theorists
and often that explicitly means social theorists within the social science traditions from
whence the methods derived (Sandelowski 1993).
Bringing a disciplinary lens into our qualitative inquiries as applied health profes-
sional researchers means that we afford at least as much respect to the intellectual foun-
dations and knowledge traditions of our own discipline as we do to the theoretical ideas
that may have been generated within disciplines that exist within society for some other
purpose than our own. It means that I as a nurse (or you as an occupational therapist or
pharmacist, for example), explicitly recognise and illuminate that disciplinary under-
standing within our explanation of the rationale for a study, our decisions with respect to
design choices, and our ultimate rendering of findings and interpretation of those find-
ings. As such, it calls for a consciousness throughout a research endeavour of why we
are engaging in the work that we do, an appreciation for the world out there that needs
this knowledge, and the social and ideational context within which that knowledge has
the potential to make a difference. Thus, it is not atheoretical as much as it is drawing
upon the discipline as its theoretical base. A disciplinary lens honours the ontological
core of our different disciplines and ensures that their epistemological structure informs
the process and ultimately the product of our research. In that our disciplines are inher-
ently applied disciplines, it helps ensure that the choices we make about what to study
and the ways in which we engage with those studies can yield research findings that are
as meaningful and useful to the applied world as possible. In this sense, the disciplin-
ary lens serves as our relevance factor. If we embrace it as an inherent component of the
way we engage in the knowledge development enterprise, we increase our likelihood of
producing research outcomes that matter. If we attempt to push it aside and build our
studies on the basis of conformity to the research rules of other knowledge traditions,
we run the risk of adding to the already problematic body of somewhat meaningless and
irrelevant study findings.
Designing Qualitative Research to Have an Impact on Healthcare from the Outset 369

How Might a Disciplinary Lens Influence

Identification of Researchable Problems?
In the conventional social science world, a researchable problem comes at the edges of
prior theorising and builds upon something theoretical to add application to a new context
or explore a phenomenon within a wider theoretical structure. It is motivated by theoris-
ing and expects the outcome of a good study to have advanced that theorising.
In the applied health disciplinary world, a researchable problem would more properly
be derived from a deep understanding of the limitations of knowledge in the practice con-
text: Why is it that not all patients benefit from the way we are delivering care? What fur-
ther factors ought we to be considering when we try to improve our practices in relation to
a specific population group or health context? What else might there be to know that might
help us imagine better ways to do what we do for those who are in need of our services?
Knowledge that is relevant to the applied disciplines is knowledge that is (or at least seems
to be) helpful in moving our collective capacities forward in the direction the discipline
envisions as an ideal world (optimal health, equitable access to health services, holistic
care, etc). Research questions derived in this way sit squarely in disciplinary relevance and
speak to our appreciation for the role our discipline was derived to fulfil within the larger
scheme of society and health.
Remembering the historic context within which the modern phenomenon of qualitative
health research derived, the idea of a ‘researchable problem’ had to do with an acknowl-
edgement that, whilst our practice interests might be complex and messy, only a small
subset of that practice was amenable to measurement. And so when our only science tools
were quantitative, we focused on trying to find aspects of our disciplinary problems that
could be measured. The rapid uptake of qualitative approaches into our disciplines once
they were ‘discovered’ in the late 1970s/early 1980s was testament to the hunger amongst
those who sought to advance knowledge for the health professions for which quantita-
tive research was insufficient and there were many intriguing aspects to what we do that
required alternatives. Qualitative methods in the social science tradition seemed much
closer to allowing for the kinds of knowledge we were seeking. However, in embracing
them, and trying hard to adhere to their rule structures in order to ensure our work was
seen to be credible, we all too often struggled with the embedded understandings within
them as to how research problems ought to be identified and positioned within a theo-
retical context. For example, drawing on phenomenological tradition, many nurses have
framed their research questions using language such as: ‘What is the lived experience of
[name of disease or health context]?’, even as their disciplinary epistemological hardwiring
ought to be telling them that there will be no essential or unitary experience, and that excel-
lent practice will require an increasingly sophisticated appreciation for variations within
experience. Breaking free of those ideas about what the methods tell us are researchable
problems, we can prioritise that which our disciplinary understandings lead us to ‘see’
in a particular manner and begin to think about relevant research questions from that
perspective. We might as a result consider reframing that question into a recognition that
patient perspectives in the collective will have something to teach us about how we con-
ceptualise and deliver care, even as each patient will come with his or her own distinctive
perspective. In this manner, the question we ask and the study we design to answer it
will reflect that explicit appreciation for how the knowledge we create will be used in the
real world. A research question such as: ‘What can be learned from the perspectives of a
370 Enhancing Healthcare and Rehabilitation

diversity of patients about effective and equitable [context] care?’, can therefore launch us
on a path of inquiry that will depart from the more theoretical ‘lived experience’ question
in all aspects of design and implementation.

How Could a Disciplinary Lens Shape

the Components of Research Design?
Whilst many of the conventional qualitative methods were developed with the goal of tight
and coherent theorising, the kind of knowledge we require in the applied health fields is
rarely of that nature. We are comfortable operating in a world of incomplete knowledge,
and it is inherent in all of our professions that we anticipate knowledge to continue to
grow and evolve. We are not seeking truth, grand theories, or ultimate answers, but better
ideas to apply to the problems of our practice and more useful understandings to help us
figure out how to do things more effectively. Therefore, we don’t need our qualitative stud-
ies to conclude with coherent theorising or complete answers, but rather we need them to
usefully add to the body of knowledge we already have available in the service of doing
what we do. Sometimes we hope they will disrupt those ideas and uncover their unin-
tended consequences. And sometimes they will confirm their general direction, but add a
new twist, a new insight, or a new context in which they might be applied. What we need
most of all is interpretation of the new elements that have arisen in the course of a study
back into the contextual world from which the question arose. We want the ‘so what’ that
takes us beyond description and into the domain of reflecting on practice.
In order to conduct qualitative studies that will ensure continual movement in the direc-
tion of better care or professional healthcare practice, we need to consider our intended
audience from the outset. As we make decisions about where and how we will recruit a
study sample, what we will do with them when we get them, and how we interpret what
they tell us, our most important guidance should come from what makes best sense from
the perspective of the world that might need the knowledge we create. For example, rather
than adhering to the strict inclusion/exclusion criteria qualitative research convention
seems to prefer, we may find it entirely reasonable to include ‘outliers’ or expand the reach
of our sample recruitment along the course of our study as the intriguing dimensions of
the phenomenon in question start to become apparent in our preliminary analysis. We
might quite reasonably shift our course based on the evolving data set, realising that an
enhanced data collection strategy or a broader set of data inputs will enhance our capacity
to have confidence in the interpretations we are starting to form about the phenomenon.
Notwithstanding the practical realities of what is available to us in our research endeav-
ours (time, resources, etc.), the natural intellectual inclination of our applied health dis-
ciplines is to follow new and emerging leads in our inquiry, to use research as a form of
detective work towards deeper understandings of things, appreciation for more nuances
in that which we already understand, or digging deeper into discoveries of possible alter-
native explanations of aspects we understand in particular ways. The natural course of
the fine minds of our applied health disciplines would not be to compartmentalise our
thinking into discrete and disconnected fundable pieces, but rather to continue to search,
explore, reflect, and examine the phenomena of our interest in a lifetime of thinking about
the problems we see in our world. Thus, we learn to conduct our research in a world in
which funding and publication infrastructures are designed for the purposes of research
Designing Qualitative Research to Have an Impact on Healthcare from the Outset 371

as piecework. And we may forget, as we do that, that there ought to be an ultimate purpose
and coherent driver behind all of those discrete studies. Instead of uncritically adopting the
design elements that are available to us through conventional methods, an understanding
of what we are doing as applied health professional detective work allows us to be creative
and purposeful in our design choices. For example, increasingly we are seeing qualitative
health researchers recognise that, because any one data collection method will have its
inherent limitations, a more robust set of findings with the capacity to get at complexity
is more likely to come from a study design that includes multiple data collection strate-
gies. Instead of relying entirely on patient interviews as a singular data source, which is
a recognisable proclivity in nursing (Nunkoosing 2005; Sandelowski 2002), a researcher
using a disciplinary lens might add in a few focus groups, harvest some collateral or con-
textual data (such as health records, stakeholder inputs), and test the emerging ideas of
the research against strategically selected practice thought leaders or decision makers.
Knowing the intended audience, and being able to anticipate the places of hesitation or
questioning, it becomes possible to pre-empt the predictable resistance and produce a set
of findings in which the audience can have a more comfortable confidence. In knowing
your audience, you are understanding not simply the people, but also the knowledge tradi-
tions and contexts within which the fruits of your research are intended to have meaning
and drawing upon that insight as you develop and implement study design.

What Does the Disciplinary Lens Have to Do with Quality Criteria?

In the qualitative world, the ‘holy trinity’ of reliability, validity, and generalisability of the
quantitative world have been generally dealt with through alternative ‘trustworthiness’
mechanisms: dependability (are the findings stable over time?), credibility (are the findings
plausible?), transferability (could the results have relevance elsewhere?), and confirmabil-
ity (could the results be confirmed or corroborated by another researcher?) (Anney 2014;
Guba 1981; Lincoln & Guba 1985). Interestingly, these quality criteria favour the more sim-
plistic sorts of findings, such as common patterns, or self-evident aspects of a phenomenon,
rather than the complex renderings that might more usefully characterise the kinds of qual-
itatively derived knowledge products that are most likely to have impact upon the field. It’s
not that they are irrelevant, but rather that we are more likely to find ‘fit’ (for example) if we
are working within a theoretical tradition and have used it to guide study design, than if
we are exploring what might lie beyond our usual ways of thinking about a practice phe-
nomenon. So the very best qualitative research, the kind that uncovers a new insight, pro-
poses a new way of thinking about something, or even just organises our thinking about a
phenomenon in a new way in order to allow us to see it through fresh eyes, may not fare as
well on standard quality criteria than will the more mundane studies (Sandelowski 2014).
Further complicating this problem is the relatively recent advent of champions of
the quality checklist. In our enthusiasm to demonstrate credibility and quality in the
evidence-based practice environment, and strengthen our capacity to synthesise findings
across multiple studies, we have tended to revert to standardised reporting mechanisms in
the expectation that all study reports ought to contain equivalent information. Commonly
referenced examples include the Consolidated Criteria for Reporting Qualitative Research
(Tong, Sainsbury, & Craig 2007) and Standards for Reporting Qualitative Research (O’Brien,
Harris, Beckman, Reed, & Cook 2014). The assumption underlying these checklists is
372 Enhancing Healthcare and Rehabilitation

that the presence or absence of certain design element claims constitutes a quality index.
However, by limiting the gaze to design elements, and not attending to the relevance of the
results in the context of the purpose for which the study was designed, as Pawson (2007)
reminds us, great new insights can derive from applied studies of a phenomenon that
don’t quite fit our conventional sense of methodological application technique.
In the world of applied health research, arguably the quality criteria applied to an estima-
tion of the worth of our qualitative products ought to have more to do with the alignment
of the study elements with the need for knowledge to advance the work of our professional
disciplines. For example, applied health professionals tend not to respond well to assertions
of fact, but rather they need to understand the basis upon which that factual claim is being
made. Therefore, epistemological credibility within the discipline, or the sense that there is a
defensible line of reasoning from foundational assumptions on which the study is grounded
through to the methodological decisions from which the findings are made and the conclu-
sions that are derived from those decisions (Thorne 2016a), ought to be an essential quality
criterion against which we assess a study’s worth. Similarly, we must demonstrate a trans-
parent analytic logic that allows our audience to see our reasoning process throughout rather
than accepting our interpretive assertions as a leap of faith (Morse 1994) and choose sample
populations that reasonably reflect the type of population towards which the findings, if
implemented, would be directed, or guide us to understand their limits with respect to that
population. Further, in order to be convincing to our intended applied audience, we need to
demonstrate an interpretive authority. In other words, we need to sound like we know what
we are talking about within the discipline and provide a plausible reflexive accounting for
how we got to where we interpretively arrived (Altheide & Johnson 1994).
Beyond an epistemological integrity to the knowledge traditions of our applied health
disciplines, quality interpretations justifiably should consider such issues as the disciplin-
ary relevance of the way we frame our conclusions, the moral and ethical defensibility of
how we put forth our interpretations, our capacity to demonstrate awareness of the impact
of context on our study findings and outcomes, and the pragmatics of the practice world
that might shape the discipline’s capacity to use our study findings. Further, given the
nature of their understandings of the knowledge they depend upon, the forms in which
we convey our findings must be consistent with the level of certainty that our disciplines
will tolerate. We deal in the world of provisional or probable truths that may be the best
we can do for now, but with the full expectation that they will not stand the test of time
because we will have inspired others to take the insights forward and continue to advance
knowledge in the field. As a result, we don’t own (or cling to, or protect) our findings as
much as we offer them to our disciplinary audiences to see if they help solve problems and
add value to the practice knowledge base – for now.

Can a Disciplinary Lens Pose Limitations?

If we accept that the disciplinary lens functions as a powerful theoretical scaffolding
shaping all aspects of our reasoning around qualitative study design and implementation
when we engage in it within our applied fields, then we also need to consider the man-
ner in which it might actually create blind spots. Just as every theoretical framework we
might draw upon will illuminate some aspects of a complex clinical phenomenon and
obscure others, it is quite reasonable to consider the manner in which our allegiance to a
Designing Qualitative Research to Have an Impact on Healthcare from the Outset 373

disciplinary understanding might lead us to recreate established beliefs, assumptions and

ideas that underpin our practice realities, and miss some of the insights that would actu-
ally allow us to advance our discipline’s knowledge base.
An example of this might be when healthcare professionals privilege patient-centredness,
they can sometimes have difficulty appreciating the wider societal or relational context
within which most patients actually want to experience their lives. It might become easy
to slip from respecting the victim narrative with which a patient might explain his or her
perspective to an assumption that the patient has been victimised. In my discipline of nurs-
ing, the pervasive conviction that a nursing disciplinary lens inherently reflects a holistic
view of patient experience, including all components of the bio-psycho-social world, might
sometimes blind nurse researchers from seeing specific economic or political dimensions
of a patient’s circumstance. In family practice medicine, it might be difficult to see beyond
disease management as the priority and understand chronic illness self-care as primarily
about living a life as well as possible. So it behooves us in our disciplinary circles to strive
to understand our disciplines – warts and all – in order that we don’t inadvertently recreate
disciplinary biases that could be limiting our ability to advance the work of our professions.
The kind of qualitative inquiry work that allows for, even encourages, continuous critical
reflection – an intellectual stance that ought to be consistent with all of our professional
practices is our best defence against seeing only what our discipline is accustomed to seeing.
Arguably, the reason we have a robust body of literature from which to critically reflect
on our design decisions (such as what we might differently expect from focus group data in
comparison to individual interviews) is because we have been expected to make our design
decisions transparent in our study proposals and reports. However, it remains relatively rare
that we see explicit mention of discipline as a theoretical grounding within a published study
report, and, therefore, we have not yet built up a tradition around what it looks like to exam-
ine its implications and potential limitations. We seem to need a literature that can guide us
to think more clearly about the influence of our disciplinary lens on the shape and texture of
our studies, as well as the nature and form of our findings. Possibly some of these insights
may emerge from the evolving project of qualitative meta-study – systematically reviewing
and deconstructing what has been qualitatively studied in a field in order to expose the ways
in which our various disciplinary, theoretical, and methodological positionings have shaped
what we think we know over the evolution of knowledge in a particular field of interest. By
encouraging applied health professional scholars to ‘own’ their underpinnings and try to
account for the way their disciplinary lens may have shaped their qualitative inquiries, we
increase the probability that this issue will attract the attention of those who are fascinated
by these evolving methodological developments. From my perspective, a disciplinary lens is
often discernible just below the surface of the report of a great applied qualitative study. And
conversely, when an applied researcher has gone through the exercise of doing a qualitative
study, and the results leave us wondering what was the point, then it is likely that the disci-
plinary lens was bracketed out or set aside in favour of other drivers.

How Would Disciplinary Lens Work in the Interdisciplinary Context?

To this point in the discussion, we have been considering the disciplinary lens within
qualitative research as if it operates as a coherent and self-sufficient orientation. But as we
know, applied health researchers often prefer to do their work within interdisciplinary
374 Enhancing Healthcare and Rehabilitation

teams, and even if our teams only reflect a single health discipline, they may aspire to
generate knowledge that transcends disciplinary boundaries. Rather than seeing this as
a contradiction, however, I would argue that the disciplinary lens that an applied health
researcher operates from is quite capable of incorporating an infinite number of additional
ideas and perspectives. Once a practitioner is out there in the practice domain, for exam-
ple, we would never set an arbitrary limit on the number of theoretical perspectives and
possibilities that he or she might have in the clinical toolbox for use on appropriate occa-
sions. Similarly, my nursing lens does not preclude my capacity to try to see the world
through the lens of my physical therapy or radiation oncology research collaborators. In
fact, when I listen to what they ‘see’ in the data or how they instinctively draw connections
between patterns in the analysis, I expand my own ability to consider possibilities beyond
what seems self-evident. In other words, my disciplinary lens resides as a constant in the
background of all that I do, even as I engage in thinking beyond it.
Said differently, my disciplinary lens is not the only theoretical framework I bring with
me. It is just one that I never let go of as one component of my research engagement.
Although I don’t need it to dominate the research team’s deliberations as to analytic struc-
ture or the framing of findings, for example, it would assert itself if there was any aspect
of the team’s intended direction or application within the research that violated a fun-
damental value of my discipline. For example, I could envision the possibility of a study
that used methodology in a technically elegant manner to generate findings that could
cause harm to sub-groups of patients if they were taken up in practice. Such a study might
reflect excellent social theorising, but problematic interpretations from the moral and ethi-
cal perspectives of my discipline. Thus, the disciplinary lenses each team member brings,
and to some extent the manner in which each team member understands the role of his
or her disciplinary lens, will determine whether an interdisciplinary team can or cannot
become a crucible for bigger and better ideas informed by the wisdom of the multiplicity
of perspectives.

How Can We Design Qualitative Studies for Maximal Impact?

In the world of the applied health disciplines, we engage in research not for the thing itself,
but for what it can do to advance the work of our professions and address the problems
of the world that our professions were designed to address. Thus, it seems to me that our
conventional style of qualitative research – interest driven and guided by methodological
rulesets that are often quite inconsistent with our professional practice disciplinary logic –
has sometimes led us to design and conduct studies that are not particularly relevant for
or amenable to translation into practice. Conversely, if we foreground our disciplinary lens
in the process of designing and conducting our qualitative inquiries, we can build that
knowledge translation potential from the outset.
Interpretive description (Thorne 2016a) is amongst the many applied qualitative meth-
odologies that has entered the field in recent years in an attempt to try to correct the
problems associated with over-reliance on social science traditions in our study designs
and to emancipate qualitative researchers in the applied health fields to draw more
strongly on their disciplinary epistemology in building design logic that aligns with
why they are doing the research and what it is meant to accomplish when it is done
(Thorne 2011). As such, it avoids prescribing a particular way to enact method in favour
Designing Qualitative Research to Have an Impact on Healthcare from the Outset 375

of encouraging the researcher to think through and articulate the approach to any study
that will suit the disciplinary purpose – to generate knowledge not for the primary pur-
pose of social theorising, but to generate knowledge that is ‘of use’ to our applied prac-
tice world (Sandelowski 1997). For those who are generally comfortable working within
one or another of the established qualitative methodological traditions, but recognise that
they are exposing themselves to critique when they depart from the original design rule
requirement in trying to shape a study towards meeting the knowledge needs of their
intended audience, interpretive description provides a resource with which to logically
justify the departures. Such departures might involve sidestepping the usual requirement
to name a theoretical framework (Sandelowski 2000), using alternative ways to justify suf-
ficiency other than data or theoretical ‘saturation’ (Malterud, Siersma, & Guassora 2015),
using techniques other than formal coding to work data (Thorne 2016a), or drawing
on methodological elements that are more usually associated with distinct traditions –
phenomenological style interviewing within an institutional ethnographic style of study,
for instance (Kahlke 2014). The key is to stay true to the purpose of the study within an
applied disciplinary knowledge generation context and to find ways of moving through
the research process that make sense within that logic, regardless of whether or not they
conform to an established formalised method.
Elsewhere, we have articulated what we think qualitative research might look like
if explicitly informed by a nursing epistemological orientation (Thorne, Stephens, &
Truant 2016). We would encourage qualitative researchers in other applied health disci-
plines to engage in a similar kind of exercise, exploring where the disciplinary logic that
so powerfully shapes the practice and general knowledge generation of the professions
can also be applied to the enterprise of qualitative method. We firmly believe that this is
key to the challenge of impact – of ensuring that as much of our research has utility for the
work that needs to be done in the field, and that we can advance practice on the basis of the
kinds of insights that qualitative methods are capable of producing.
Integrating knowledge translation from the outset of a study means that we try to ask
the kinds of questions for which there is a practice community that wants the answers
(Thorne 2016b). We frame our research question in a manner that highlights that knowl-
edge need and sets out to find those answers using methods selected for their capacity to
do justice to the task. When we understand the need for that knowledge, we also recog-
nise the complex context within which any answers will ring true and make sense to our
intended audience or not. Thus we engage in our research in a manner that engages with
those layers of complexity so that our findings, whatever they may be, are seen to have rel-
evance. Instead of approaching the problem of knowledge translation as an afterthought,
or assuming the evidence uptake problem is a deficiency of the clinical world, we make it
our business to weave a relevance consideration through all phases of our studies.

Concluding Comments
All researchers hope that their studies will have impact and make a difference in
some aspect of their field of interest. Researchers in the applied health professions hope that
the impact of their studies will be in the direction of the betterment of someone’s life or the
improvement in some aspect of professional practice. By consciously aligning the coherent
and robust intellectual structures of our applied heath disciplinary epistemologies with
376 Enhancing Healthcare and Rehabilitation

the infinite range of methodological design options that have evolved in the qualitative
health universe, and creatively building our projects in a manner that makes sense within
an applied disciplinary logic, we can expand our capacity to tackle real problems, engage
with the complexities of our real world, and nudge forward our societal capacity to serve.
When we name our disciplinary lens, and demonstrate the manner in which it informs
our qualitative work, we increase our chance of doing studies that contribute meaning-
fully to the world and make a difference for something that matters. The point, after all,
is the doing of good research – and optimising the possibility of a relevant return on the
investment that entails.

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20
Ethnography and Emotions: New Directions
for Critical Reflexivity within Contemporary
Qualitative Health Care Research

Shane Blackman, Adele Phillips and Rajeeb Sah

CONTENTS
Introduction ................................................................................................................................. 379
Conservative Disciplines, the Biomedical Model and the Chicago School ........................ 380
The Rise of Ethnography with Healthcare Research ............................................................. 381
Researcher Positionality, the Discipline and the Profession ................................................. 383
Managing Emotions and Researcher Commitment ............................................................... 385
Autoethnography: Writing, Rapport, and Trust ..................................................................... 387
Conclusion ................................................................................................................................... 390
References .................................................................................................................................... 390

Introduction
In this chapter, we look at the potential of ethnographic research to enhance healthcare
policy and practice, through placing a greater emphasis on the emotional dimension of
health. This chapter aims to explore the role of emotional relationships between research-
ers and research participants to develop an understanding of healthcare beyond that of
the predominantly clinical focus on physical functioning, to incorporate the social and
cultural contexts of healthcare on a holistic basis.
Qualitative research approaches build on an exchange relationship shaped by
emotions, which can enable researchers and research participants to engage in a deep
understanding of sensitive topics to co-construct their lived experience. Drawing on
several fieldwork examples of ethnographic studies, we demonstrate the importance of
the research participants’ voice in understanding their healthcare provision. Firstly, we
address the positivist nature of medical disciplines and the rise of ethnography within
healthcare research. Secondly, we explore the place of emotion, reflexivity, and auto-
ethnography linked to researcher positionality and commitment in qualitative health
research.

379
380 Enhancing Healthcare and Rehabilitation

Conservative Disciplines, the Biomedical Model and the Chicago School

The clinical model of medicine based on an objective science is referred to as the domi-
nant biomedical explanation. Sarah Nettleton (1995: 3) argues that whilst health disciplines
have been subject to contemporary social changes, the legacy of the biomedical model
is that: ‘Secure in its approach, medicine has scribed its own history’. On the nature of
disciplines, Basil Bernstein (1977: 168) makes it clear that the processes of what is legiti-
mate within a discipline is based on power, coercion, and struggle: ‘New legitimations
are socially constructed’. For early health career researchers, Bernstein’s thoughts are par-
ticularly relevant where he suggests that: ‘We are told and socialised into what to reject,
but rarely told how to create’ (167). In this chapter, we base our ideas, theories, and meth-
ods on an interpretive approach within healthcare founded on Weber’s idea of verstehen,
where the emphasis is placed on understanding the meaning and feeling of experience
from those involved (Weber 1964). At the same time, we recognised that our approach
towards emotions is sometimes positioned in opposition to the dominant positivist mod-
els operated within health (Weber 1964). Recently, in terms of sexuality and health, in the
United Kingdom in 2018 there was a re-emergence of the opposition between the bio-
medical model and contemporary social and cultural change with regard to conversion
therapy in relation to homosexual men. For example, the Daily Mail July 3rd, 2018 reports
that: ‘Gay cure’ therapy will be outlawed: Prime Minister Theresa May tackles ‘burning
injustices’ faced by homosexuals. The roots of conversion therapy go back to the beginning
of the twentieth century, these were advocated by authorities and religious organisations
as medical interventions to cure homosexuality based on the notion of disease, because
homosexuality was considered to be not only a perversion, but incurable. Practices such as
transplanting heterosexual testicles on to homosexual men and chemical castration with
hormonal treatment serve as a reminder of Foucault’s (1977) notion that moral assumptions
have formed a foundation for certain medical practices which have a major impact on
people’s mental health and subjective experience.
For us, it is the central position of the person, not merely the body that shapes the
ethnographic approach which is based on sharing and co-operation. Crucially, we assert
that health professions research explores caring behaviours empathically underpinned by
emotions made explicit through physical touch. Within health research, Kathleen Gilbert
(2001: 10) critically questions the place of rationality because for her, there has been a
suppression and rejection of the place of emotion in research. Epistemology, as Alison
Jaggar (1989: 159) demonstrates is not based on reason, because the dominant paradigms
of knowledge assess emotion negatively through ‘suspicion’ and ‘hostility’. Qualitative
researchers have historically been criticised for ‘contaminating’ the research process with
their emotions (McKenzie 2017). We see Thomas Kuhn’s (1970) idea about the conservative
nature of dominant paradigms as relevant, through its construction of barriers to creative
development and innovation. As Holliday and MacDonald (2019) point out, the dominant
paradigm not only protects the old scientific orders, but ‘established careers’. We argue
that there are degrees of sustained recidivism within old paradigms which serve to protect
previous ideas from change, through what Deanna Kuhn (1991: 68) has argued is a form
of ‘pseudo evidence’ where existing explanations are restated as evidence. Thomas Kuhn
(1970: 146) states: ‘No theory ever solves all the puzzles which it is confronted at a given
time; nor are the solutions already achieved often perfect. On the contrary, it is just the
incompleteness and imperfection of the existing data-theory fit that, at any time define
many of the puzzles that characterise normal science’. In Kuhn’s terms, the biomedical
Ethnography and Emotions: New Directions for Critical Reflexivity 381

model is the established paradigm, and we argue that its power requires critical reassess-
ment because the biomedical model is not able to capture, explain, or fully understand
healthcare.
According to George Engel (1977: 129): ‘The dominant model of disease today is
biomedical, and it leaves no room within this framework for the social, psychological, and
behavioural dimensions of illness’. In the United Kingdom, Engel (1960) first developed his
critique, but in the United States the challenge to the positivist model began in the 1950s
with Renne Fox’s (1957) ‘Training for Uncertainty’ in the collection The Student Physician
edited by Merton, Reader, and Kendall and subsequently in Fox’s Experiment Perilous (1959),
alongside Boys in White by Becker, Geer, Hughes, and Strauss (1961). These are landmark
studies in establishing the initial insights into the value of understanding everyday
sensitivities within medical spaces through participant observation. These were followed
by Julios Roth’s (1963) Timetables Structuring the Passage of Time in Hospital Treatment, who
studied at the University of Chicago and was mentored by Everett Hughes of the Chicago
School, who also championed participation observation. Joseph Gusfield (1963, 1967: 231,
1968: 61), who did his PhD at the University of Chicago, builds on Howard Becker’s et al.
(1961) approach to argue that illness is not merely socially constructed or only a ‘medical
fact’ it is ‘a political issue’. The symbolic interaction tradition at Chicago focusing on health
includes the work of Irving Goffman (1961, 1963), alongside Glaser and Strauss’s (1965)
Awareness of Dying, which was the foundation upon which they subsequently built and
developed the ideas of grounded theory within qualitative research (Blackman 2010). The
impact of this early work is described by Paul Atkinson and Lesley Pugsley (2005: 231)
in terms of the: ‘…methodological commitment to investigation of everyday social life in
situ’. They identify this Chicago School approach focused on the systematic observation
of detail and context through participatory sensitivity as the beginning of contemporary
ethnographic commitment to healthcare.
The dominant paradigm within healthcare is positivist, its epistemological position
is defined through the methodological principle of replicability. Quantitative research
offers reliability, enables generalisation, and enhances the status of biomedical science
and supports its hegemonic position. This epistemological construction of medicine
has been transferred to healthcare and consequently held in check insights from ethno-
graphic approaches. For us, the continued processes of objectification, reductionism, or
dehumanisation which feature within the clinical gaze, demonstrate the urgent neces-
sity to bring together the social and cultural world of the patient as a resource to enable
more diversity and sensitivity to the biomedical world where agency could be seen as an
interactive feature within health studies. The challenge for contemporary ethnography
is to embrace its biographical and empathic foundation of urban ethnography within
the Chicago School of Sociology and take up the challenge of subjectivity, emotion, and
interpretation to develop a more fit for purpose ethnography where reflexivity rests at the
heart of qualitative approaches (Merrill and West 2009).

The Rise of Ethnography with Healthcare Research

Goodson and Vassar (2011) maintain that whilst: ‘Ethnography has been used in medi-
cal education for more than 50 years’, it has been kept on the periphery and criticised
for being too vague, difficult to measure, not replicable, and too subjective. Within health
382 Enhancing Healthcare and Rehabilitation

professions research, it has now become increasingly recognised that qualitative and in
particular ethnographic research has been identified as contributing to an increased under-
standing of healthcare. The recent rise of ethnography has also been integrally related to
the slow growth of acceptance towards the role that emotions can play within qualita-
tive fieldwork. Jones and Hunter (1995), Pope et al. (2000), Meyer (2000), Caprara and
Landim (2008), Morgan-Trimmer and Wood (2016), and McGarrol (2017) detail the value
of fieldwork and emotion to access culture and beliefs to enhance a more sensitive and
responsive delivery of healthcare. It is in this sense that Jan Savage (2000: 1402) argues
that the clinical world has everything to gain because: ‘Ethnography can help healthcare
professionals to solve problems beyond the reach of many research approaches’. Within
radiography, for Hayre (2016: 195), the value of ethnographic method is: ‘…to capture and
understand naturally occurring world activities in real-world settings’. The rise of quali-
tative research is not surprising, according to Janice Jones and Joanna Smith (2017: 100)
who argue that: ‘The value of focused ethnographic studies in healthcare is essential to
develop an in-depth understanding of healthcare cultures and explore complex phenom-
enon in real world contexts’. In contrast, Rashid et al. (2015:11) argue that: ‘Researchers
in health disciplines do not divulge much about their fieldwork’. They further add that:
‘Health researchers conducting ethnographic research rarely discuss ethical concerns that
they might have encountered during the conduct of their research’. This serves as a warn-
ing to ethnographers that increased recognition does not equate with increased acceptance
or understanding. This accusation, however, does not square with Atkinson and Pugsley’s
(2005: 232) understanding of ethnography as defined through a clear and open ‘commit-
ment to reflexivity’.
The paradigm of positivism within healthcare according to Goodson and Vassar (2011)
should be placed within a historical, social, and cultural context. For them, ethnography
within health is not about testing theory or value neutrality, it is about how: ‘…knowledge
is socially constructed and situated within a particular context’. This is the real value of
ethnography within health studies for Draper (2015: 36) who focuses on ‘real-life contexts’
and ‘culturally shared’ experiences to maintain that ethnography can: ‘…provide rich, con-
textual and valuable insights uncovering meaning and experience … . of both giving and
receiving care’ (41). Our argument in this chapter is that doing fieldwork within health
studies is a messy business, it is emotional labour, but also highly effective and can offer
new knowledge for healthcare within a context of rigor and responsive sensitivity. The
heart of ethnographic research is to capture people’s real-life encounters and experiences
within everyday contexts through the development of relationships based on emotion.
It is the methodological integration of ethnography and emotion which we identify as
the strength of the method, not its weakness. A key factor about ethnography is its focuses
on presence, being live in the field through observation, and this in turn supports the
validity of the data through ‘being there’. Hayre et al. (2016: 2) argue that participant obser-
vation created the opportunity for immersion to: ‘…provide original insight into radio-
graphic practices underexplored within the UK offering original insight by exploring PCC
practices within the X-ray room using advanced technology’. On this basis of immersion
within the culture of the everyday, the researchers embrace the diverse worlds of the par-
ticipants, and the method calls forth for the researcher to recognise their own place within
that world through researcher positionality. Our argument highlights the necessary value
of fieldwork and emotion within health studies. The benefit of ethnography within health-
care is that it offers, according to Dixon-Woods (2003: 327): ‘…probing into areas where
measurement is not easy, where issues are sensitive and multifaceted’. We see ethnography
as of value to address issues of causality to offer contextually relevant data that can offer
Ethnography and Emotions: New Directions for Critical Reflexivity 383

support, imagination, and sensitivity within person-centred healthcare (Draper 2015). It is

not our endeavour to advance the case for ethnographic approaches in health studies by
dismissing the positivist biomedical model of medicine, we want to open up the paradigm
to increase its responsiveness.

Researcher Positionality, the Discipline and the Profession

The development of researcher positionality within qualitative fieldwork studies has
enabled methodological accounts to be more honest and informed about how the data
are not only collected and managed, but also to show how interpretation takes place and
theory is constructed from data (Blackman 2007). This ‘reflexive turn’ has demonstrated
the importance of subjectivity in the formal process of data collection. Bourdieu (1990) asks
us to think about our ‘situatedness’, the personal meaning of our research within a critical
context (Blommaert 2005). In response to the challenge of the ‘crisis of representation’ in
ethnography, reflexivity established the opportunity for researchers to describe, assess,
and theorise the practice of doing and writing research. Reflexivity in healthcare is about
dialogue to explain that your research is not about disclosure or a confession, it reflects
back on researchers to describe what they do and how they did it.
Initially, we want to highlight the difference between making a critical stance within
the discipline and how this critical position may be understood by PhD researchers and
early career researchers. From within healthcare I shall highlight two different examples,
the first relates to health and drug workers as researcher participants who were con-
cerned that their critical perspective may have an impact on their organisation, and the
second example relates to two PhD research students, one focused on an ethnography of
X-ray units and the other focused on an ethnographic study on operating theatres. Both
doctoral students through their findings began to develop a critical stance towards their
profession. As professional practitioners, they were personally concerned that their field-
work evidence could be seen in a negative light against their profession. This made them
feel uncomfortable and was identified as: ‘I could be undermining my own profession.
Showing weaknesses! I didn’t think that was the aim of my research’.
The first example involved ethnographic interviewing and participant observation over
a 9-month period with health and drug practitioners (Blackman et al. 2018). The ethics of
the research project stipulated that the research participants could read what they had
said during data collection and how the initial report was draft. The work was read by
the professionals, two initially stated: ‘I was shocked at what I read. Collectively we are
all supposed to take the same position, but we weren’t. We can’t let this go out!’ Another
stated: ‘Who said that? You have got to be joking! Hold on! I have an idea. How did you
get that out of them!’ The healthcare professionals were reflecting on the meaning of the
ethnographic data. Through conversational interviewing as an ethnographic technique,
the use of empathy and common ground enabled direct intimate data and real emotions
based on experience to emerge. The consequent issue was that being a professional in a
recognisable organisation or institution made some of the research participants wary of
their critical comments because it looked bad on the organisation or ‘the comment might
be traced to me’. This made them concerned about their employment status. On this basis,
it became essential to reaffirm the ethical consent and work with professional healthcare
workers to ensure that their consent was agreed, but also to guarantee that their data
384 Enhancing Healthcare and Rehabilitation

released, i.e., their comments could not be traced to them, or their organisation. On this
basis, the individuals and administrative identities of the participating organisations and
professionals were anonymised so that each person felt confident and gave their consent.
Subsequently, all professional practitioners were positive about the research experience
enabling them to reflect on and to develop more effective work within their organisation
and the holistic delivery of healthcare provision.
The second example relates to supervision of two PhD research students who were
undertaking ethnographies within hospital environments, one which focused on X-ray
units and the other on operating theatres. During the fieldwork, there came a point where
both PhD students observed critical moments which either demanded their intervention
in the research setting or made them aware that medical practitioners and patients were
coming at the issues of healthcare from different perspectives.
Both PhD researchers experienced contact with other medical professionals where a
language of objectivity defined patients as passive. There was a domination of the physi-
cal body to such an extent that the person appeared superfluous, they were reduced to the
physical bit part, for example, ‘the knee’. The medicalisation of patients that defines them
in terms of their illness, disease, or body part can intensify patient feelings of reductionism
to a medical problem. In contrast, within these medical settings it was found that patients
sometimes sought humour and irony to deflect their health condition, whereas the medi-
cal practitioners seemed unaware of how personal and intimate their interventions were
in the lives of ordinary people. Initially, both researchers were reluctant to speak of these
incidents because such observations may look badly on their research methods and also
their respective professions. Here, the patient does not have a name, but is labelled as the
illness. Only after considerable reflection, did both researchers realise that the diagnostic
application to reduce the human being to a medical label had an impact on patients as
well as their own researcher positionality, as they felt uncomfortable in the manner that
the patient was addressed by senior medical professionals.
Further, the PhD students found that during a series of fieldwork observation they
were being asked questions by other professionals within the health setting that dem-
onstrated other professionals lack of knowledge or skill. The specific intervention by
the PhD students offered support, but at the same time revealed weaknesses within the
profession. Thus, qualitative fieldwork enabled these researchers to assist fellow profes-
sional practitioners with patient care, but brought serious reflection because they were
aware of how other professional practitioners were engaged in interventions which had
shortcomings. It is at this moment that both PhD research students were excited that
they had gained new knowledge of how medical professionals’ interact with patients,
but at the same time the data showed the professional as wanting. Their researcher posi-
tionality made them concerned about how much they should reveal, how much to tell, so
rather than promote agency, here, reflexivity heightened personal tension for both health
researchers. On this basis, reflexivity was experienced as a worry and concern rather
than an experience of agency.
The basis of ethnographic research lies in the empathetic interaction between the
researcher and the research participants to develop a relationship of trust to explore lived
experiences, which has the potential to impact upon health conditions. Patients perceive
their behaviour, health, and well-being as private and confidential, and the sensitivity
attached with health conditions makes them feel vulnerable and emotional to share their
experiences. Talking to people about their feelings and experiences towards health and
well-being is emotional and sensitive. Although healthcare workers are backed by their
professional competence making patients relatively comfortable and confident to share
Ethnography and Emotions: New Directions for Critical Reflexivity 385

their health experiences, it also creates barriers amongst patients about the details of the
information that are required to be shared with a professional. Patients often are reluc-
tant to uncover their feelings beyond the health and illness because of the fear that judge-
ments might be made about them (Råheim et al. 2016). The challenge for the patient is an
attempt to balance the information that they want to share with a professional and/or a
researcher, which has the potential to create further distress and concerns about their well-
being. Therefore, the role of health professionals as researchers becomes more challeng-
ing, as they are required to avoid any additional distress or concerns to their participants
because of the research and negotiate the access to the patient ensuring that they are dedi-
cated to the care and welfare of their patients.

Managing Emotions and Researcher Commitment

Qualitative research explores social processes and practices by examining people’s atti-
tudes, perceptions, and thoughts within specific contexts to understand experiences
of service users and service providers to improve the quality of healthcare. There is
a growing awareness that qualitative research is an embodied experience for the
researcher and the research participant and emotions play a key role throughout the
research process (Dickson-Swift et al. 2009). Burkitt (2012: 469) suggests that feelings
and emotions are central to the reflexive processes during the qualitative research. The
emotions here incorporate thinking as well as feeling aspects of people’s experiences.
The role of emotions in understanding the social world through qualitative, and in par-
ticular ethnographic research, within healthcare can be understood at two levels. Firstly,
we need to reflect on the patient’s emotions whilst thinking and sharing their feelings
and experiences about health and well-being issues with an unknown or relatively less
known person who comes as a researcher to collect information. Secondly, we also need
to reflect on the researcher’s emotions who navigates through the process of accessing
patients or research participants, building rapport, trust, and relationships and eventu-
ally having to exit the fieldwork to complete the research project, leaving all the feelings
and affections behind.
The dual roles and responsibilities of a health professional researcher have a potential
impact on the researcher’s positionality when participating with research participants
or being with people during the research process. An understanding about researcher’s
positionality helps researcher to recognise their experiences, beliefs, research interests,
and personal stance in the context of the given research study, so that they may acknowl-
edge how these factors influence the research (Savin-Baden and Major 2013). For a health
professional researcher, it may be appropriate to separate the professional role whilst
acting as a researcher, but this is not always possible, and health professional research-
ers need to manage their emotions to make conducive decisions that assist patients in
the best possible way. For example, during my ethnographic research (Sah 2017), once
I had initial contacts with a group of young people, the challenge was to build rapport
that would facilitate the discussions around sensitive topics of sexual lifestyles and rela-
tionships. Although my professional identity and competence made my research par-
ticipants relatively comfortable and confident, they were unwilling to provide detailed
information about their sexual lifestyle experiences because of the fear that the informa-
tion might not remain confidential and judgments would be made about them. I had
386 Enhancing Healthcare and Rehabilitation

to consistently remind them about my professional roles and responsibilities, which

included ensuring confidentiality, but at the same time I had to restrain myself from
providing sexual health advices. I had to negotiate around my positioning between a
health professional and a researcher, which meant I had to constantly balance my emo-
tional engagement during the process of the in-depth interviews, and reflexivity was a
key research tool that helped me to navigate through this emotional process.
To pursue a career in the health professions involves making a commitment to engag-
ing in everyday working practices which are underpinned by duties of caring for
others. Pulcini (2017) emphasises that caring is a moral and practical activity, which
is motivated by emotions of love, compassion, and generosity. Qualitative researchers
frequently reflect on their motivations for their research interests and highlight the emo-
tional attachment to their topic of study. When researching controversial areas such as
sexuality and health, we found that even being a medical doctor may not facilitate access
and present hurdles. For example, for my ethnographic research exploring sexual life-
styles and relationships of Nepalese young people in the United Kingdom (Sah 2017),
I found comparatively easy access to the field because of my professional background of
being a doctor, which is a widely respected profession within the Nepalese community.
I started my fieldwork by talking to everyone and anyone with an aim to build support
and gain trust from the close-knit Nepalese community, where discussing sexual health
topics are taboo. I expected this would build a relationship and parents would introduce
me to their sons and daughters, which would help me to understand the multiple field
realities of young people and their family, with whom they live. However, the sensitive-
ness of the topic meant Nepalese parents and community leaders were not comfortable
to relate themselves with such research.
In another example focused on emotion and commitment, my own motivations for con-
ducting research into drug and alcohol using behaviours were driven by my experiences
as a harm reduction practitioner in a community-based drug and alcohol service. I was
emotionally attached to the work I did and to the service users with whom I worked.
I cared about what had happened to them during the course of their lives leading up to
them accessing the service and wanted the best possible treatment outcomes for them so
that they could lead healthier, happier lives. There is increasing recognition that quali-
tative researchers who are investigating emotionally sensitive topics can be at risk of
feelings of guilt, vulnerability, and exhaustion (Dickson-Swift et al. 2007). Reflecting on
her experiences conducting research with women who were awaiting trial, Wincup (2000)
recalls that when the participants in her research became upset or cried, she instinctively
attempted to avoid the situation by steering the conversation into another direction. She
reports that she felt guilty and anxious in instances where her questioning had caused
the upset. Further guilty feelings were experienced by this researcher at the notion of
an exploitative aspect to this kind of research, that researchers may enjoy the rich learn-
ing experience involved and potentially build a career on the basis of the emotional
fatigue experienced by the participants. However, Wincup (2000) expressed that she was
able to reconcile some of her guilty feelings through considering the potential benefits for
the research participants. Despite the expressions of sadness, the participants reported
that they had actually enjoyed taking part in the research and had found it beneficial to
voice their emotional distress.
It is argued that emotional distress in the field does not necessarily result in damage
(Watts 2008). It has been shown that confronting negative emotions can actually benefit
health and attenuate the advancement of chronic illness through the promotion of resilience
and the development of approach coping (Hershfield et al. 2013). Whilst research protocol
Ethnography and Emotions: New Directions for Critical Reflexivity 387

and ethics processes should seek to protect both researchers and the researched from dan-
gerous practices, this should not be at the expense of enabling the clear benefits that eth-
nographic work can convey. Ethical processes and supervision should adequately prepare
researchers and participants for the emotional experiences which result from entering the
field, the data collection itself, and exiting the field, arguably, these processes frequently
neglect the emotional dimensions of the research. For example, in my own research expe-
rience looking at the alcohol-related life experiences of older people through qualitative
interviews which took place in their homes, the ethics process very much focused on my
personal safety at the prospect of entering people’s homes, and the research that I had read
emphasised the importance of quickly developing a sense of rapport with my participants
upon entry to the field. To my relief, I was able to do these things without difficulty, how-
ever, the processes had not prepared me for exiting the field. Whilst interviewing one male
participant, a widower aged 74 years, it became apparent to me that he felt sad that I would
have to leave his home once the interview had drawn to a close. I felt that he was devising
strategies for keeping me in his home for a longer period, such as talking for longer than
we had agreed, expressing sadness that his family did not visit him often enough, showing
me personal possessions in the house, and touring the garden. This evoked a strong sense
of guilt in me, particularly as it made me wonder about my own older family members, and
I felt guilty that perhaps I had not visited them enough when they were alive! Eventually,
I managed to draw the conversation to a close and explained that I needed to be elsewhere.
As I left, he insisted on giving me a pot plant from his garden, which I think was of comfort
to us both, as it represented that in some small way, the researcher-participant relationship
would continue. I left his home feeling that the research process should better prepare both
researchers and participants for ending the emotional connection and exiting the field with
an understanding of the benefits that the research can bring.
Taking part in the research can legitimise the recounting of personal experiences and
normalise conventionally unacceptable emotions, which Jaggar (1989) describes as ‘outlaw
emotions’, such as anger or embarrassment in the face of discrimination. It is suggested
that policies, practices, and discourse concerning chronic health conditions construct peo-
ple with these conditions as ‘the other’ (Walton and Lazzaro-Salazar 2015), so it is benefi-
cial when participants can gain a sense of catharsis through the telling of marginalised
experiences. Watts’ (2008) ethnographic study examining how health professionals learn
on a medical ward, found that clinical artefacts such as paper-based drug charts and clini-
cal equipment created physical spaces within which participants clustered and interacted
(Sheehan et al. 2016). It was found that these artefacts reinforced hierarchies and posi-
tions of power within medical teams. As Conrad and Barker (2010: 71) argue, ‘…the patient
experience is not the same as the illness’. Understanding how patients connect through
observing and examining the physical environment are under-explored areas within eth-
nographic work, and it is suggested that further research seeks to incorporate other ways
of knowing.

Autoethnography: Writing, Rapport, and Trust

Autoethnography enables us to reconstruct both others and ourselves through an under-
standing of the self in relation to the research participants. In this way, our personal his-
tory is integrated into our professional research practice. These ideas were first explored
388 Enhancing Healthcare and Rehabilitation

by C.W. Mills’ (1959) The Sociological Imagination, where he urged us to examine individ-
ual biographies and histories within the social structure, to re-set our ambition and rei-
magining research methodologies. Autoethnography as a qualitative research method is
another way of furthering our understanding of the emotional relationship between the
researcher and the researched. Heewon Chang (2016: 444) argues that autoethnographic
research methods aim to ‘connect the personal with the social’. Importantly, Deborah
Reed-Danahay (2001: 410) demonstrates that autoethnographic approaches are not only
focused on exploring the relevance of life history and subjectivity, but also the relation-
ship between the narrator and the research participants through the creation of writing.
The dominant voice in autoethnography Holliday (2016: 122) argues ‘…in the written
form of research, the only narrative is that of the researcher’, but at the same time he
admits that interactivity and dialogue shape the creation of the text. The tension in all
ethnographic work stems from the researcher being both the subject and object of the
fieldwork and aims to elicit the author’s voice through the exploration and analysis of
their personal experiences (Ellis and Bochner 2000).
Although, autoethnography has been contested for its ‘confessional basis’ and an over
preoccupation with the personal as ‘navel gazing’ (Delamont 2007; Allen-Collinson and
Hockey 2008). We support Sonyini Madison’s (2012: 198) argument that autoethnogra-
phy can form part of a critical reflexive ethnography to ‘…deepen, extend and compli-
cate the world around and beyond the researcher’s grasp’. The recalling of often intense
experiences as they are remembered by the author, through a critical lens, invokes deep
emotional responses. In addition to autoethnographic work being valid data in itself, it
can also be used to elucidate richer data concerning the emotional experiences of oth-
ers, through training research participants to analyse their own emotional experiences
(Buckley 2015). In Langhout’s (2006) research on community garden projects with African
American women, she found that although she viewed her relationship with the partici-
pants through the lens of gender and class, her research collaborator, who was an African
American woman, viewed this through the lens of race and white privilege. This chal-
lenged Langhout’s (2006) assumptions concerning her positionality as a researcher, she
had not considered how being a white woman from an academic community oriented her
into a position of privilege. Boyd (2008) argues that autoethnography can enable trans-
formational learning, as positions of social power such as white privilege may remain
largely invisible to the researcher themselves. Researchers need to initiate appropriate
spaces for narratives, whereby the discourse is not constrained by oppressive forces,
which may reinforce the internalisation of such oppression. Allowing the research par-
ticipants to speak also enables the researcher to integrate their own voice and experience.
Where participants experience marginality, they may feel their voice or experience is
unwelcome. It is here that autoethnography can prioritise participants through sharing,
making interaction live and personal (Blackman 1997). However, following an analysis
of pregnant and postpartum women’s narratives concerning drug treatment, Radcliffe
(2011) suggests that drug-using women who are participants in qualitative research frame
their stories within a ‘moral transformation’ guise, so, in essence, the research encounter
serves to provides a space in which the participants locate themselves within a frame
of subordination. Ethnographic studies can develop our understanding of professional
identities and challenge the feasibility of assumed hierarchies within healthcare organ-
isations, thus invoking change at the institutional level (Kielmann 2012). Therefore, con-
sidering how researcher identity shapes the emotional connections with participants can
cast a critical light on how positions of privilege operate and work towards the decoloni-
sation of research (Datta 2017).
Ethnography and Emotions: New Directions for Critical Reflexivity 389

The emotional experiences of research participants are widely reported during and
after the research, whereas the discussion about researcher’s emotions has less attention
or there is an ambiguity in acknowledging it publicly (Gilbert 2001; Blackman 2007). Even
when discussed, the focus is often on managing, rather than integrating, emotions into
the research process. In the chapter, we have raised some issues about the researcher’s
own turmoil in understanding, managing, and integrating their emotions during build-
ing relationship with participants, identifying positionality, and experiencing reflexivity
during the research process. Auto and ethnographic research require researchers to enter
into the subjective world of the research participants to understand them and their wider
culture by exploring their experiences, feelings, perceptions, and thoughts. In order to
achieve this, the researcher acts as a ‘human instrument’ (Fetterman 2010: 33) in the field
and relies on all their senses, thoughts, and feelings, including emotions, to connect with
research participants to examine the sociocultural landscape of the research topic in the
particular context. Davis (2001) argues that healthcare researchers experience a constant
interplay between personal, emotional, and intellectual work (Mills 1959). The first step
for initiating research is talking to the people, and the opening conversations and com-
munications are acts of negotiation to build relationships, rapport, and support to gain
access to the sites and potential research participants for the research fieldwork. Many
health professional researchers will probably have straightforward access to the health-
care settings and other health researchers may gain access to the community through
rapport building with initial conversations, however, it is challenging for them to be with
people everywhere in their everyday lives. Nevertheless, the aim of being with people is to
achieve social and cultural immersion in a constructed research site, which has the sense
of cultural boundedness and where researchers are able to talk, participate, and observe
patients for the purpose of health research.
Health professionals have empathy towards their patients that generates intense emo-
tions on both sides to help establish rapport with research participants, which is key whilst
talking to the people in an initial stage of ethnographic research. However, there is a need
to find a balance of emotional engagement since researchers are expected to be responsible
and careful to avoid preconceptions influencing the research data because of the close rela-
tionships with patients, which becomes burdensome for health professional researcher.
The challenges lie in a successful negotiation with the patients to gain a sufficient level of
trust, which would ensure the deep exploration of experiences, feelings, perceptions, and
thoughts, maintaining the emotional sensitiveness attached to the healthcare topics.
However, there are instances when researchers are so emotionally overwhelmed during
the research that they are not able to or do not try to hold back or manage their emotions
during the interviews, instead prefer to be part of that experience (Dickson-Swift et al.
2009). This works well, as qualitative research requires an immersion from the researcher to
be with people or participate with research participants during the fieldwork to infer their
viewpoints, feelings, perceptions, and thoughts. Gilbert (2001) maintains that the emotions
expressed from the researcher during the research process can be positive as well as nega-
tive. The effective use of emotions during research processes can provide rich narratives of
patient’s perspectives and interpretations, whereas mismanagement and ineffective use of
emotions may increase the vulnerability of the research participants. For example, during
my ethnographic research (Sah 2017), the discussions around perceptions and experiences
of research participants about the topics such as secrecy in dating and romantic relation-
ships, importance of parental consent for marriage, transformation, and expectations from
love and arranged marriage were so relational that I ended up sharing my perceptions and
experiences on those topics. From an autoethnographic position, this generated intense
390 Enhancing Healthcare and Rehabilitation

emotions on both sides that helped to establish rapport and build trusting relationships
to motivate young people to uncover their hidden experiences and feelings through the
mutual emotional conversations, which would have remained unexplored through gen-
eral conversations. The key aspects of autoethnography are to be flexible and adapt to the
context and exercise the roles and responsibilities based on the requirements of the time
and space, rather than trying to have a distinctive position.

Conclusion
We have argued that the conservative nature of the biomedical paradigm can set limits
on the contribution of ethnographic methods to demonstrate the value of emotions to an
improved understanding of healthcare. Within healthcare, a major obstacle to overcome
has been the idea that the physical determines health and this deterministic force also
shapes our emotion that responds to health conditions. In short, we challenge the hege-
mony of the physical over the emotional, and this is shown through our ethnographic
studies and people’s relationship to their well-being. From the fieldwork examples, we
found that emotional contact brought forward a range of contradictory, oppositional,
and pleasurable experiences through encounters with anger, frustration, guilt, irony, and
humour. Recognition of these different and diverse emotions and experiences enabled
us to address healthcare issues from different perspectives where emotion and ethnogra-
phy are positive assets in understanding and sharing. Researchers’ initial motivations for
undertaking research can involve close engagement with people’s everyday lives and are
also emotionally driven.
Ethnographic work involves a shared emotional relationship between the researcher
and participants, which can convey a number of benefits to research participants. These
include enabling an exploration of the meaning attached to health status and condi-
tions, providing a space to develop an empowered voice, and initiating mechanisms for
reducing societal marginalisation. This chapter has explored the researcher-participant
relationship within qualitative research and argued that ethnographic research is under-
pinned by emotions throughout the whole research process.

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Index

acquired brain injury 65 clinicians 108

adapted physical activity 13 cochrane 195
adolescence 46 coding 243, 347
adulthood 211 cognitive behavioural therapy 118
adult life 211 Cohen’s kappa coefficient 25
aerobic exercise 345 coherence 95
Alzheimer’s 227 communication 108
American spinal injury association impairment community 122; group classes 343
scale 142 companionship support 254
amputation 168 comparison groups 33
anthropology 366 complementary 108
anxiety 66, 70, 89 composite story 97
aphasia 185 computer aided qualitative data analysis
apoptosis 141 software 13
aquatic program 26 concept development 243
arthroplasty surgery 176 confirmability 3, 20, 136, 371
audit trail 10 constructive grounded theory 111
autism 25, 213 content analysis 111, 190, 203
auto/biographical 7 control groups 35
autoethnography 387 counseling 67, 205
credibility 20, 36, 136, 181, 227
bariatric journeys 261 cultural norms 75
bariatric surgery 262 culture 95, 229
bias 266, 278, 373 cystic fibrosis 94
biography 7
biopsychosocial 234 data analysis 109
brachial plexus 168; injuries 175 data saturation 7, 354
Delphi technique 185
Canadian Standing and Walking Measures dementia 272
Group 155 dependability 21, 54, 136, 181, 371
cancer 273 depression 66, 111, 191, 349, 353
cardiomyopathy 93 descriptive 113, 314; statistics 204
cardiorespiratory 286 developmental disabilities 210, 213
cardiothoracic 93; transplantation 103 developmentalism 212, 231
caregivers 111, 135 diabetes 94, 213, 260
caregiving 65, 245 diagnostic radiographer 5, 11
carers 108 diaries 81
carpal tunnel syndrome 177 dietician 228
categories 200 dignity therapy model 103
causality 382 disabilities 168, 210
causational relationships 4 Disabilities Education Improvement Act 14
central nervous system 226 disabled children 211
cerebral palsy 168 discourse 212, 223
Chicago school 379 disease-modifying antirheumatic drugs 201
childhood disability 212 documenting (artefacts) 23
children 212 donor 94
chronic obstructive pulmonary disease 94 Down’s syndrome 213

395
396 Index

drowning 26 internet-based 202

drugs 97 interpretative phenomenological analysis 23, 347
Dupuytren’s disease 172 interpretive description 159
dying 244 interviews 5, 23, 68, 85, 157, 186, 310
irony 384
economic 275
eHealth 178 jealousy 168
e-mail 24; interviews 81 job interviews 39
emotion 96, 173, 275
emotional intimacy 257 kidney failure 94
empathy 41, 193 knee 107
emphysema 94 knowledge translation 144
epigenetics 286
epistemological 204, 368 leave the field 7
epistemology 53, 374 life stress 228
ethics 15, 96, 383 lived experience 255
ethnographic sphere 6 love 271
ethnography 6, 203, 379
evidence-based practice 144, 371 management 273
exercise 178, 236 mechanical ventilation 79
medicine 114
Facebook 194 member checking 203
family 201; caregivers 212; members 219 meta-analyses 148
feasibility 272 meta-ethnography 279
fibromyalgia 203, 225 meta-syntheses 148
field notes 149, 276 mixed methods 25, 148, 271
flexor tendon injury 174 mobility disability 286
focus groups 111, 191, 278, 341 morality 95
foster children 263 mortality 99
moxibustion 118
gatekeepers 11, 353 multidisciplinary team 191
generalisability 58, 160, 371 multiple sclerosis 278
general practitioners 115 multi-sited research 9
genetics 286 music 171
gonorrhoea 54
grounded theory 68, 168, 243, 276 narrative research 94
national health service 83
hand conditions 167 national institute for health and care
harm 4, 56 excellence 107
health promotion 57 nerve injuries 168
holism 178 neurological conditions 339
hospice 273 neurological populations 146
humour 384 neurorecovery network 157
hypothesis 20, 277 non-disabled children 218
non-traumatic SCI/D 142
ideologically 7 non-verbal communication 169
ideology 3 nursing 69, 365
inductive 9, 108 nVivo 24, 279
infection 54, 142
informal caregivers 271 obesity 25; bias 266
intellectual disability 216 objective 287
intensive care unit 95 observations 22, 384
Index 397

occupational rehabilitation 34 rehabilitation counsellors 40

occupational therapists 40 reliability 159, 202
ontological 204 researcher immersion 23
orthopaedic surgeons 115 researcher positionality 379
osteoarthritis 115 research ethics 96, 212
research participants 248, 353
pain 107; control 273 respite 74
paradigm 277, 280, 380 rheumatoid arthritis 169
paralysis 142 rheumatologist 202
participant observation 277 rheumatology 199
patient-centredness 224 rich description 34
patient diaries 111 rigor 82
patient-oriented evidence 229 risk 102
peer-debriefing 8
peer-mentorship 153 safer-sex 54
peer-reviewed 294 sampling 83
phenomenology 67, 111, 168, 366 sandwich generation 275
photographs 146, 160 second-generation knowledge 148
photovoice 160, 279 self 16
physiotherapists 82, 115, 298 semi-structured interviews 25, 70, 111,
policy 134 157, 274
policymakers 4, 22, 159 semi-structured questionnaire 276
politicians 75 sequentialisim 11
poor self-image 40 sequentialist philosophy 3
positionality 379 sex 53, 55
positivism 22, 382 sexual health 56
post-modern 7 sexually transmitted infections 55
posttraumatic stress 168 sexual risk-taking 58
pragmatism 5 significant others 82
prolonged engagement 8 Skype 122
prolotherapy 118 smoking 286
prosthesis 170 social 294; exclusion 40; media 193; support 245;
psychological distress 276 work 367
psychologist 350 sociocultural 389
psychomotor therapy 14 sociopolitical 209
psycho-social 168 spina bifida 44
public health 22 spinal cord 141
sport 141
qualitative comparison group 33 spouses 257
quality of life 33, 66 stakeholders 267
quantitative 4, 21, 66 statistical inference 4
questionnaire 58, 158, 276 statistical probability 53
stigma 59
radiation dose 5 stories 75
radiation oncology 374 stress 75
radiographer 4 stroke 186; survivor 272
randomised control trials 4 structured field interviews 111
reassurance 100, 254 sub-categories 40
recidivism 380 subjectivity 381
recreation 14 surgeons 115
reductionism 168 surgery 118
reflexivity 10, 17, 229, 379 survey 146
398 Index

sustainability 272 trustworthy 7, 277

Syracuse university’s fit families program 22 Twitter 9
systematic reviews 280
unprotected sex 54
telephone interviews 298, 338, 341 upper extremity trauma 178
textual analysis 68, 71 utilitarian 6
Thailand 54
thematic analysis 127, 146, 278, 298, 341 validity 8, 203
themes 69 variables 21
theory 144, 243; development 213 verbatim 96
third-generation knowledge 153
total knee replacement 128 wearable technology 118
transcript 84 web-based education 202
transferability 9, 18, 248, 371 well-being 244
transplant 93 when to stop 10
traumatic brain injury 353 wrist fracture 177
traumatic hand injury 169
traumatic SCI 141 X-rays 5; experiments 5
treatment 172
triangulation 188, 280 yoga 158
trustworthiness 288, 338 youth 211