The Mental Health Effects of Informal Caregiving Emerging

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vi

Preface

INTRODUCTION

This book aims to provide research findings that shed light on the factors that
impact the social wellbeing of informal caregivers in a variety of contexts. The
rationale that undergirds the publication of this book is explained in Chapter
1 and further made evidence through discussions in subsequent chapters.
The various groups, both individuals and institutions, that can benefit from
this publication are mentioned in Chapter 1. The book has five chapters
that include discussions of research design, methodology, presentation and
discussion of the research findings as well as a postscript (Chapter 5). The
postscript aims to provide a reflective autobiographical account of Dr. Debra
Gavin Ware’s experience of being an informal caregiver. Meanwhile, Chapter
1 presents the methodological and conceptual approach, which informed the
research design for the study. It is pertinent to reiterate here that the design
of this study sought to discern the positive psychological forces that shape
subjective wellbeing of informal caregivers.
This research objective prompted the adoption of a mixed methods research.
The rationale that undergirds this methodological preference is presented.
In addition, advantages of mixed methods approach are elaborated upon.
Furthermore, other issues are addressed, including sample size, instrumentation
as well as research procedures. This chapter also explains, in much detail, the
parameters and boundary conditions that constituted the guiding assumptions,
limitations, as well as delimitations of the study. It should be noted that the
chapter also explains the essential approach to data analysis, which embodied
the adoption of descriptive and probabilistic or inferential statistics.
Chapter 2 posits that based on a careful review of extant literature, the quest
to identify the factors that assist caregivers in sustaining or elevating their
subjective wellbeing while providing comfort and support to care recipients
is critical. In this sense, discussion in this chapter provides a rationale for
Preface

the design and focus of research reported in this book, which focuses on the
positive factors that elevate subjective wellbeing of informal caregivers. Thus,
this chapter explores various research findings and theoretical discussion on
associations between subjective wellbeing and fundamental characteristics
of mental and psychical wellness of those providing care on an informal
basis. These include the accentuation of self-efficacy, spirituality and other
pertinent psychological and social categories.
It also includes the extent to which an informal caregiver receives support
from others to enhance a sense of belonging to community. In addition, it
further includes personal resilience of the caregiver as well as opportunities
to participate in leisure activities and community involvement. This chapter
further provides a discussion of how Lawrence Kohlberg’s moral development
theory helps to explain the positive self-rating of the role of spiritual beliefs
in the lives of informal caregivers. Chapter 5 encapsulates discussion of
research findings and their relevant policy conclusions and recommendations.
Chapter 4 reports and discusses the finding that research participants had
the perception that their spiritual beliefs were positively influential to their
caregiver roles and their subjective wellbeing. It also probes the finding
that research participants seemed to rely on their spiritual convictions as the
lynchpin in sustaining themselves in their roles as informal caregivers as it
related to their subjective wellbeing. Similarly, the chapter discusses that the
finding that the vast majority of research participants believed their resilience
allowed them to be optimistic about their performance as caregivers. Other
relevant research findings are also duly discussed.
Chapter 5 encompasses a reflective autobiographic account of the principal
investigator, and co-author Dr. Debra Gavin Ware that plumbs the depths of
what it means to be an informal caregiver for a family member or loved one.
The chapter traces the researcher’s steps as a caregiver for her late mother and
the joys of personal fulfillment (positive sense of wellbeing) and occasional
travails associated with an individual stepping into this role. The researcher
use the variables in the study (subjective wellbeing, self-efficacy, spirituality,
social support, resilience, and leisure participation) as lenses to discuss a
reflective account of her experiences in the context of her own family. The
researchers strongly hope that accounts presented in this book would make an
essential contribution to advancing the frontiers of psychological and social
policy science. And, given the timely nature of this publication, it is small
wonder that such an aspiration will be realized.

vii
viii

Introduction

This book could not have come at a very important time, given the exigencies
of the historical moment. Indeed, we as an American society are currently
experiencing the explosion of caregiving in a variety of settings, including
institutional and informal settings. The increasingly elderly and baby boom
population has continued to grow as life expectancy continues to improve
among all racial groups, including African Americans, requiring more senior
care. In addition, the number of children with special healthcare needs across
racial categories has also grown. In fact, it has been estimated that 13.9% of
children under age 18 have special healthcare needs.
There are also adults in the middle of the developmental lifespan who
find themselves incapacitated for one reason or another and in need of care.
Among these population groups could be counted veterans from recent wars
from Iraq and Afghanistan who have returned home. These public policy and
societal challenges demand new understandings and forms of care both in
formal institutional and informal settings. They also demand nuanced and
scholarly appreciation of the pertinent social and psychological factors that
enhance caregiving, especially as a voluntary endeavor by families and love
ones of those incapable of caring for themselves.
This book is an outcome of Dr. Debra Gavin Ware’s doctoral dissertation
research project—a research effort, which in effect was an extension of the
author’s lived experiences acquired in the context of providing care to her
late mother. Since this critical milestone in the author’s life, she has always
been seized by the question as to which salient and psychological factors
affect the subjective wellbeing of informal caregivers. A further rationale
for the study stemmed from the realization that there is a paucity of research
surrounding the positive aspects of the caregiving experience. A careful
reviewed of prior research revealed that prior studies had properly determined,
Introduction

in various statistical magnitudes, the negative consequences associated with

the caregiving experience. Hence, on the basis of these presuppositions, the
study was purposely designed to explore the influence of presumed positive
psychological factors on caregivers, such as self-efficacy, social support,
spirituality, resilience, and leisure participation on the subjective wellbeing
of the informal caregiver.
The study also examined the aforementioned factors in terms of their
implications for managers in 21st century caregiving organizations. Accordingly,
crucial changes were made to the original manuscript to make it suitable for a
book project of this nature through the collaborative efforts of both authors.
Also, various inputs from double blind reviewers commissioned by IGI
Global Publishers were made in the publication process that undoubtedly
improved this final product.
Readers would note that of specific concern to the authors was exploring
the psychological construct of subjective wellbeing and affects that mediate
this construct in the context of informal caregiving activities. The research
approach adopted in conducting this study was one of a concurrent mixed
methods design. In this context, quantitative as well as qualitative approaches
were adopted. Crucially, a sample of 36 African American participants from
two local religious organizations who categorized themselves as informal
caregivers took part in the study. The quantitative analysis portion of the study
involved the application of correlation and regression methods to determine
the extent to which the dependent variable (i.e., subjective wellbeing) was
influenced by the independent variables (i.e., self-efficacy, social support,
spirituality, leisure participation, and resilience).
The results reported in this book showed a statistically significant
relationship between each variable and subjective wellbeing, with the
exception of resilience. Results of a stepwise regression analysis showed
that the number of months an informal caregiver spent providing care was a
significant positive predictor of subjective wellbeing. Additionally, results
of the qualitative analysis showed that informal caregivers believed all of
the independent variables or factors delineated in the study reported here
affected their subjective wellbeing.
These caregivers often perceived their responsibilities to the care recipient
as an act of love and contended that the aforementioned independent variables
were important factors in enhancing their subjective wellbeing in terms of
helping them to better manage their caregiving responsibilities. The findings

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 Introduction

are supported by prior empirical and theoretical studies. The current text
also recommends that future empirical inquiry be encouraged to examine
the effects of implementing programs and public policies designed to assist
informal caregivers and in so doing add to the refinement and contextual
efficacy of these policies and programs.
These researchers are convinced that various groups and stakeholders can
benefit from this publication. These include scholar practitioners working in
higher education and those working as clinical therapists in private practice.
Undergraduate and graduate students studying psychology or other behavioral
sciences could benefit from reading this publication. Informal caregivers with
a professional background in the fields of psychology or other behavioral
sciences could also benefit immensely from incorporating the research findings
of this book in their analytical frameworks and approaches. Finally, nonprofit
organizations and other institutional stakeholders could from research findings
reported in this book.

ORGANIZATION OF THE BOOK

This section provides an introductory summary and goes beyond that to conduct
an evaluation of the significance of this book in terms of current trends and
research results. Chapter 1 reflects critical discussion of the state of research
on subjective wellbeing. This chapter posits that the quest to identify factors
that assist caregivers in maintaining and elevating their subjective wellbeing
while providing nurturing and support to caregivers is critical.
The chapter further states that the design of this study was gear at empirically
examining various constructs in ways that fit the essential research problem.
The chapter ends with an attempt by the authors to explore the link between
Kohlberg’s developmental theory and subjective wellbeing. The authors
rendered various conjectures concerning the cognitive-developmental
implications of some of the factors (i.e., self-efficacy, social support, resilience,
spirituality and leisure participation) that tend to elevate or diminish subjective
wellbeing of informal caregivers as a result of providing care to love ones.
Meanwhile, Chapter 2 presents the methodological and conceptual
framework of the study. This chapter explains that the study relied on the use
of a concurrent mixed methods research design, including the sample selection
process, sample size, selection of participants, instrument, methodological
assumptions, procedures, limitations, data collection methods, and data
analysis. Chapter 3 focuses on the presentation of research findings. In effect,

x
Introduction

chapter three provides the crucial link that exists between the articulation of
the research problem, generation of data and the empirical findings discussed
in chapter four. Chapter 4 presents discussions of research results in view of
extent literature and makes series of policy recommendations for both future
research endeavors and policy development. Finally, Chapter 5 presents a
reflective account of one of the authors (Dr. Debra Gavin Ware) regarding
critical aspects of her experience as an informal caregiver. The aim of this
reflective account was to walk readers through some aspects of how the author
experienced the interaction of subject wellbeing and the independent variables.

STATEMENT OF THE PROBLEM

There is a paucity of research surrounding the positive aspects of the caregiving

experience. To address this issue, the current study was designed to explore
the influence of self-efficacy, social support, spirituality, resilience, and
leisure participation on the subjective wellbeing of the informal caregiver.
Prior research has clearly revealed the negative consequences associated
with the role of the informal caregiver. These concerns include, but are not
limited to, such issues as emotional episodes, financial stress, ill health,
and even an increased risk of mortality experienced by informal caregivers
(Cohen, Colantonio, & Vernich, 2002; Haley, LaMonde, Han, Burton, &
Schonwetter, 2003; Robinson, 1983). However, these authors content that
to further understand the informal caregiver perspective; researchers must
begin to examine the positive factors expressed by the caregivers themselves
(Cohen et al., 2002). This is the gap in research that the current study was
designed to address.
As the positive aspects of caregiving have received so little attention,
there are many things about the informal caregiver environment that remain
a mystery. A number of authors have explored the effects of positive feelings
as they relate to informal caregiving (Allen, 2003; Cohen et al., 2002; Kramer,
1997). The known studies pertaining to the positive aspects of caregiving
involved investigations of a variety of operational definitions, from assessment
of the caregiving experience, benefits and enjoyment of caregiving, personal
gratification, and satisfaction, to mention a few (Cohen et al., 2002; Haley et
al., 2003; Lawton, Rajagopal, Brody, & Kleban, 1992). However, no studies
have linked all the independent variables mentioned with subjective wellbeing
as the dependent variable, as represented in the current study.

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 Introduction

The timeliness of this research is apposite. The vast disparity in research

pertinent to the informal caregiver is apparent. Informal caregivers as well
as the communities that offer them support (e.g., advocacy groups, medical
institutions, social service agencies, and the general populace) seek advice,
direction, and resources in handling the issues that arise for the caregiver.
It was these researchers hope that the current study would contribute to the
research regarding factors that can influence the wellbeing of the informal
caregiver.

Purpose of the Research

The purpose of this mixed methods study was to examine the influence of
self-efficacy, social support, resilience, spirituality, and leisure participation
on the subjective wellbeing of informal caregivers.

Research Question

Based on the problem statement for this study, one research question was
addressed: What are the significant factors that contribute to increased levels
of subjective wellbeing of informal caregivers?

Hypotheses

To begin to answer the research question, the researchers developed testable

statistical hypotheses. There was one null hypothesis and one alternative
hypothesis for each of the predictor variables presented in this study:

H10ː There is no relationship between self-efficacy and the subjective

wellbeing of informal caregivers.
H1a: There is a positive relationship between self-efficacy and the subjective
wellbeing of informal caregivers.
H20ː There is no relationship between social support and the subjective
wellbeing of informal caregivers.
H2а: There is a positive relationship between social support and the subjective
wellbeing of informal caregivers.
H30ː There is no relationship between resilience and the subjective wellbeing
of informal caregivers.
H3а: There is a positive relationship between resilience and the subjective
wellbeing of informal caregivers.

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Introduction

H40ː There is no relationship between spirituality and the subjective wellbeing

of informal caregivers.
H4а: There is a positive relationship between spirituality and the subjective
wellbeing of informal caregivers.
H50ː There is no relationship between leisure participation and the subjective
wellbeing of informal caregivers.
H5а: There is a positive relationship between leisure participation and the
subjective wellbeing of informal caregivers.

DEFINITION OF TERMS

The items listed in this section may have different meanings in various
contexts or other studies. To avoid confusion and misunderstanding of how
these words were applied in the current research as well as to ensure the terms
were understood to be specific and appropriate to the current investigation,
the following definitions are provided.
Formal caregiver: “Formal caregivers including home health care providers
and other professionals [who] are trained and paid for their services. Some
formal caregivers are trained volunteers associated with an agency” (Family
Caregiver Alliance, 2014, p. 12).
Informal caregiver: Goodhead and McDonald (2007) described an informal
caregiver as those:

Caring for a friend, family member or neighbor who because of sickness, frailty
or disability can’t manage everyday living without help or support . . . [it] is
not usually based on any formal agreement or service specifications. Informal
care giving is characterized by relationships and social expectations. (p. 4)

Leisure participation: Dunn and Strain (2001) defined leisure participation

as “participating in activities/interests such as regular exercise, hobbies, free
time for oneself, sex life, opportunities to socialize with friends, community
involvement, vacations and leisure time pursuits and activities” (p. 32).
Resilience: Gaugler, Kane, and Newcomer (2007) explained this term as
“positive or successful adaptation, competence, and functioning in the face
of stressful experiences” (p. 38).

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 Introduction

Self-efficacy: Bandura (1978) defined self-efficacy as “a judgment of

one’s ability to execute a particular behavior pattern” (p. 240).
Social support: Findler (2000) described social support as “the extent to
which a person receives assistance and help from others, and also to a sense of
belonging” (p. 370). She continued to assert that there are three dimensions of
social support: formal versus informal, received (objective) versus perceived
(subjective), and structural versus functional. The focus in the current study
was on the second dimension, concentrating on the perceived facet that
highlights “the recipients’ perceptions of what comes from others and their
view of this support as helpful or intended as helpful” (p. 371).
Spirituality: Buck (2006) defined spirituality as “that most human of
experiences that seeks to transcend self and find meaning and purpose through
connection with others, nature, and/or a Supreme Being, which may or may
not involve religious structures or traditions” (p. 290).

REFERENCES

Allen, S. M., & Ciambrone, D. (2003). Community care for people with
disability: Blurring boundaries between formal & informal caregiver.
Qualitative Health Research, 2(2), 207–226. doi:10.1177/1049732302239599
PMID:12643029
Bandura, A. (1978). Reflections on self-efficacy. In S. Rachman (Ed.),
Advances in behavior research and therapy (pp. 237–269). Oxford, UK:
Pergamon.
Buck, H. G. (2006). Spirituality: Concept analysis and model development.
Holistic Nursing Practice, 20(6), 288–292. doi:10.1097/00004650-200611000-
00006 PMID:17099417
Bulger, M. W., Wandersman, A., & Goldman, C. R. (1993). Burdens and
gratifications of caregiving: Appraisal of parental care of adults with
schizophrenia. The American Journal of Orthopsychiatry, 63(2), 255–265.
doi:10.1037/h0079437 PMID:8484431
Cohen, C. A., Colantonio, A., & Vernich, L. (2002). Positive aspects of
caregiving: Rounding out the caregiver experience. International Journal of
Geriatric Psychiatry, 17(2), 184–188. doi:10.1002/gps.561 PMID:11813283

xiv
Introduction

Dunn, N. J., & Strain, L. A. (2001). Caregivers at risk? Changes in leisure

participation. Journal of Leisure Research, 33(1), 32–55. doi:10.1080/0022
2216.2001.11949929
Findler, L. S. (2000). The role of grandparents in the social support system
of mothers of children with a physical disability. Families in Society, 81(4),
370–381. doi:10.1606/1044-3894.1033
Gaugler, J. E., Kane, R. L., Kane, R. A., Clay, T., & Newcomer, R. (2003).
Caregiving and institutionalization of cognitively impaired older people:
Utilizing dynamic predictors of change. The Gerontologist, 43(2), 219–229.
doi:10.1093/geront/43.2.219 PMID:12677079
Goodhead, A., & McDonald, J. (2007). Informal caregivers literature review. A
report prepared for the National Heath Committee. Wellington, New Zealand:
Health Services Centre, Victoria University of Wellington.
Haley, W. E., LaMonde, L. A., Han, B., Burton, A. M., & Schonwetter,
R. (2003). Predictors of depression and life satisfaction among spousal
caregivers in hospice: Application of a stress process model. Journal of
Palliative Medicine, 6(2), 215–224. doi:10.1089/109662103764978461
PMID:12854938
Kramer, B. J. (1997). Gain in the caregiving experience: Where are we?
What next? The Gerontologist, 37(2), 218–232. doi:10.1093/geront/37.2.218
PMID:9127978
Lawton, M. P., Rajagopal, D., Brody, E., & Kleban, M. H. (1992). The
dynamics of caregiving for a demented elder among Black and White families.
Journal of Gerontology, 47(4), S156–S164. doi:10.1093/geronj/47.4.S156
PMID:1624710
Robinson, B. (1983). Validation of a caregiver strain index. Journal of
Gerontology, 38(3), 344–348. doi:10.1093/geronj/38.3.344 PMID:6841931

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 Introduction

ADDITIONAL READING

Diener, Ed., Lucas, R., Schimmack, U., & Halliwell, J. (2009). Wellbeing for
public policy: Positive Psychology (1st ed.). Oxford, UK: Oxford University
Press, Inc.
Diener, Ed., & Suh, E. M. (2000). Culture and subjective wellbeing. Cambridge,
MA: The MIT Press.
Eid, M., & Larsen, R. J. (2008). The science of subjective wellbeing. Guilford
Publications, Inc.
Lane, R. (2001). The loss of happiness in market democracies. New Haven,
CT: Yale University Press.

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 1

Chapter 1
Research on Subjective
Wellbeing

ABSTRACT
This chapter posits that based on a careful review of extant literature, the quest
to identify the factors that assist caregivers in sustaining or elevating their
subjective wellbeing while providing comfort and support to care recipients
is critical. In this sense, discussion in this chapter provides a rationale for
the design and focus of research reported in this book, which focuses on the
positive factors that elevate subjective wellbeing of informal caregivers. Thus,
this chapter explores various research findings and theoretical discussion on
associations between subjective wellbeing and fundamental characteristics of
mental and psychical wellness of those providing care on an informal basis.
These include the accentuation of self-efficacy and spirituality. It also includes
the extent to which an informal caregiver receives support from others to
enhance a sense of belonging to community. In addition, it further includes
personal resilience of the caregiver as well as opportunities to participate
in leisure activities and community involvement.

INTRODUCTION

The daily tasks of a caregiver can seem insurmountable. The quest to identify
factors that assist caregivers in maintaining or elevating their subjective
wellbeing while providing comfort and support to care recipients is critical.
Given the criticality of these factors, this study was designed purposely to

DOI: 10.4018/978-1-5225-7452-1.ch001

Copyright © 2019, IGI Global. Copying or distributing in print or electronic forms without written permission of IGI Global is prohibited.
 Research on Subjective Wellbeing

examine various constructs that may aid in this pursuit. A review of literature
and related research was consequently undertaken to investigate work that
had been done previously in this area and to establish the rationale for the
current study. However, an expansive and comprehensive review of literature
and research revealed no extant studies dealing directly with the topic of the
current investigation.
This chapter contains a review of the body of research and publications
related to the selected topic to provide a relevant context for the focus of
the current study. The researchers examined five independent variables to
determine their influence on the subjective wellbeing of the informal caregiver:
self-efficacy, resilience, spirituality, social support, and leisure participation.
Readers should note the degrees of statistical associations between these
factors and subjective wellbeing are reported in chapter three of this book.

SUBJECTIVE WELLBEING

I am determined to be cheerful and happy in whatever situation I may find

myself. For I have learned that the greater part of our misery or unhappiness
is determined not by our circumstances but by our disposition. Martha
Washington (1789)

Since the 1800s, philosophers, scholars, and religious leaders alike have been
curious about the concept of subjective wellbeing, though they had not termed
the concept as such. These individuals concentrated on the emotional, mental,
and physical pleasures and pains people experience. Notable philosopher,
Jeremy Bentham, whose central influence was on moral philosophy and the
theory of utilitarianism, also wrote on the subject of wellbeing and stated
that the existence of pleasure and the lack of pain are essential components
of living (Internet Encyclopedia of Philosophy, n.d.).
Empirical research into subjective wellbeing began early in the 20th
century. Fluegel conducted one of the first relevant studies in 1925 on
subjective wellbeing utilizing quantitative methods. He assessed the moods
of nine respondents (five females and four males) by asking them to diary
their emotional events. He focused on their recordings of pleasure and pain,
and then quantified their reactions across moments in time. His findings
reflected that individuals were more active and energetic when their moods
were elevated (Fluegel, 1925, pp. 345-346). His study was further significant as

2
Research on Subjective Wellbeing

it precluded modern experience sampling approaches on subjective wellbeing

(Diener, Oishi, & Lucas, 2003).
Shortly after World War II, researchers began using short and simple
questionnaires to ask individuals about their happiness levels and life
satisfaction. These researchers wanted to reproduce representative samples
of varying nationalities and chose respondents based on certain demographic
criteria. The respondents were asked basic questions and were given simple
response choices. Even though the questionnaires used were brief, they
yielded important findings. A case in point is a 1969 study conducted by
social psychologist, Norman Bradburn. The study questionnaire, albeit brief,
had an influential impact across various social research disciplines. One of
the more germane findings in the study was the revelation that persons with
substantial family responsibilities and low income purported decreased levels
of wellbeing (Bradburn, 1969).
Wilson conducted a comprehensive review on subjective wellbeing in
1967 with his research entitled, “Correlates of Avowed Happiness.” He
believed the theories of happiness had been stagnant since the days of the
Greek philosophers. The conclusion from his 1967 study was that happy
people generally possessed the following characteristics: “young, healthy,
well-educated, well-paid, extroverted, optimistic, worry-free, religious,
married person with high self-esteem, job morale, modest aspiration, of either
sex and of a wide range of intelligence” (Wilson, 1967, p. 294). Since the
time of this study and within the last several decades, structured methodical
research has flourished in the field of wellbeing exploration (Oishi, Kesebir,
& Diener, 2011).
The development of the term subjective wellbeing is attributed to
psychologist Ed Diener, and defines how individuals perceive the quality
of their lives. It comprises aspects of cognitive judgment and emotional
reactions. It encompasses moods and emotions as well as assessments of a
person’s satisfaction with both the general and specific areas of his or her life.
Diener’s most noteworthy work involved his contribution to the measurement
of happiness itself. He contended that an individual’s happiness quotient is
genetic and suggested that demographic factors only marginally affect an
individual’s innate happiness level. A significant portion of his research
focused on three major components of subjective wellbeing: a positive
affect (pleasurable feelings), a negative affect (painful feelings), and life
satisfaction. Diener believed these three factors give subjective wellbeing
construct validity and enable it to be measured (Diener & Diener, 1996).
Waldron (2010) indicated that part of this viewpoint was based on the influx