Table Of ContentCompassion Fatigue in Adult Daughter Caregivers for Older Adults with Dementia
by
Jennifer Rebecca Day
Nursing
Duke University
Date:_______________________
Approved:
___________________________
Ruth Anderson, Supervisor
___________________________
Linda Davis
___________________________
Cristina Hendrix
___________________________
Richard Schulz
Dissertation submitted in partial fulfillment of
the requirements for the degree of Doctor
of Philosophy in
Nursing in the Graduate School
of Duke University
2013
ABSTRACT
Compassion Fatigue in Adult Daughter Caregivers for Older Adults with Dementia
by
Jennifer Rebecca Day
Nursing
Duke University
Date:_______________________
Approved:
___________________________
Ruth Anderson, Supervisor
___________________________
Linda Davis
___________________________
Cristina Hendrix
___________________________
Richard Schulz
An abstract of a dissertation submitted in partial
fulfillment of the requirements for the degree
of Doctor of Philosophy in
Nursing in the Graduate School of
Duke University
2013
Copyright by
Jennifer Rebecca Day
2013
Abstract
Background: Family caregivers for a parent with dementia often experience
negative emotional consequences. These caregivers may also be at risk for compassion
fatigue, a concept that was introduced to the health care community as feelings of anger,
inefficacy, apathy, and depression resulting from a caregiver’s inability to cope with
devastating stress. Compassion fatigue was first observed in nurses and later in other
caring professionals such as social workers and psychologists and the definition was
adapted to focus on prolonged exposure to suffering as one of the primary causes.
Although compassion fatigue has not been studied in family caregivers
providing care at home, their experiences, particularly those of adult daughter
caregivers for parents with dementia, appear to create a foundation for developing
compassion fatigue. For this reason, it was important to investigate compassion fatigue
in this growing population of caregivers and this dissertation explored compassion
fatigue in daughter caregivers for parents with dementia. The dissertation aims were to:
1) identify common themes across the literature on compassion fatigue and to apply
these themes and the existing model of compassion fatigue to informal caregivers for
family members with dementia; 2) analyze secondary data from Project ASSIST to
substantiate a need for further study of compassion fatigue in adult daughter caregivers
of a parent with dementia; 3) explore the feasibility of studying compassion fatigue in
family caregivers; and 4) explore compassion fatigue, its contributing factors, and
potential outcomes in adult daughter caregivers for parents with dementia.
Methods: The dissertation consisted of three studies. The first study, a review of
the literature addressed aim 1 of the dissertation as I applied the established model of
compassion fatigue to family caregivers. The second study, a secondary analysis pilot
iv
study addressed aim 2 and aim 3 of the dissertation study. The third study of the
dissertation was a qualitative study exploring the concept of compassion fatigue in
daughter caregivers for parents with dementia.
Conclusions: The literature review found evidence to support the components
of the established model of compassion fatigue and findings suggested additional work
was needed on the concept of compassion fatigue in family caregivers. Findings from
the secondary analysis provided support for more in-depth exploration of the concept of
compassion fatigue in family caregivers. Findings from the larger qualitative study
provided support for many of the factors related to compassion fatigue, but also
suggested revisions to the established model of compassion fatigue were needed. A
revised model was created based upon the findings from this dissertation.
The revised model incorporates the contributing factors and moderators of
compassion fatigue found in family caregivers and the model also proposes revised
characteristics and outcomes of compassion fatigue. Findings from this dissertation also
suggest new areas for research, specifically with all dementia caregivers and caregivers
who do not utilize formal or informal support. Additional value from this dissertation
derives from the detailed explanation of previous relationship quality, empathy, and
caregiving experience. This dissertation is one of a few qualitative studies on
compassion fatigue to provide this level of detail and provides a base for future studies
of compassion fatigue in all family caregivers.
v
Dedication
This work is dedicated to my husband, Kevin and my sons, Conor and Oliver.
vi
Contents
Abstract..........................................................................................................................................iv!
List of Tables................................................................................................................................xii!
List of Figures.............................................................................................................................xiii!
Acknowledgements...................................................................................................................xiv!
1. Introduction...............................................................................................................................1!
1.1 Compassion fatigue in family caregivers......................................................................1!
1.2 Theoretical framework.....................................................................................................6!
1.2.1 Theory of compassion fatigue....................................................................................6!
1.3 Dissertation purpose statement......................................................................................7!
1.3.1 Specific aims.................................................................................................................7!
1.3.2 Research questions by dissertation chapter.............................................................8!
1.3.2.1 Chapter 2: Compassion fatigue: An application of the concept to informal
caregivers of family members with dementia..............................................................8!
1.3.2.2 Chapter 3: Compassion fatigue in dementia caregivers at home.................8!
1.3.2.3 Chapter 4: Compassion fatigue in adult daughter caregivers for parents
with dementia...................................................................................................................9!
1.4 Summary..........................................................................................................................10!
2. Compassion Fatigue: An Application of the Concept to Informal Caregivers of Family
Members with Dementia............................................................................................................12!
2.1 Introduction.....................................................................................................................12!
2.2 Compassion fatigue: Themes from the literature.......................................................13!
2.3 Compassion fatigue: Applied to informal caregivers...............................................17!
2.3.1 Contributing factors of compassion fatigue..........................................................19!
2.3.1.1 Empathic ability, concern and attachment.....................................................19!
2.3.1.2 Exposure to perceived suffering......................................................................20!
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2.3.1.3 Sense of satisfaction...........................................................................................22!
2.3.1.4 Traumatic memories..........................................................................................22!
2.3.1.5 Life demands......................................................................................................23!
2.3.2 Indicators of compassion fatigue............................................................................24!
2.3.2.1 Hopelessness.......................................................................................................24!
2.3.2.2 Helplessness........................................................................................................25!
2.3.2.3 Apathy.................................................................................................................25!
2.3.2.4 Emotional disengagement or isolation...........................................................26!
2.3.3 Consequences of compassion fatigue.....................................................................26!
2.3.3.1 Depression...........................................................................................................27!
2.3.3.2 Burden..................................................................................................................27!
2.3.3.3 Caregiver strain..................................................................................................28!
2.3.3.4 Decreased relationship quality.........................................................................29!
2.3.3.5 Termination of caregiving, abuse and neglect...............................................29!
2.4 Conclusions.....................................................................................................................31!
3. Compassion Fatigue in at-Home Adult Daughter Dementia Caregivers: A Pilot Study
........................................................................................................................................................34!
3.1 Background......................................................................................................................34!
3.2 Methods............................................................................................................................38!
3.2.1 Project ASSIST............................................................................................................38!
3.2.2 Semi-structured Interviews......................................................................................39!
3.2.3 Participant Subsample..............................................................................................40!
3.2.4 Data Analysis.............................................................................................................41!
3.3 Results..............................................................................................................................43!
3.3.1 Uncertainty.................................................................................................................43!
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3.3.2 Doubt...........................................................................................................................44!
3.3.3 Attachment.................................................................................................................45!
3.3.4 Strain............................................................................................................................47!
3.4 Discussion........................................................................................................................48!
3.5 Limitations.......................................................................................................................51!
3.6 Conclusion.......................................................................................................................52!
4. Compassion Fatigue in Adult Daughter Caregivers for Parents with Dementia..........53!
4.1 Background......................................................................................................................53!
4.2 Theoretical framework...................................................................................................57!
4.2.1 Theory of compassion fatigue..................................................................................57!
4.3 Purpose statement..........................................................................................................59!
4.4 Methods............................................................................................................................59!
4.4.1 Setting and Sample....................................................................................................60!
4.4.2 Sampling plan............................................................................................................62!
4.4.3 Consent........................................................................................................................62!
4.4.4 Attrition/retention strategies..................................................................................63!
4.4.5 Data collection............................................................................................................63!
4.4.5.1 Open-ended interviews.....................................................................................63!
4.4.5.2 Subject characteristics........................................................................................65!
4.4.6 Data preparation........................................................................................................65!
4.4.7 Data analysis..............................................................................................................65!
4.4.8 Methods to optimize validity...................................................................................67!
4.5 Findings............................................................................................................................69!
4.5.1 What are the characteristics of compassion fatigue described by adult
daughter caregivers for parents with dementia?...........................................................74!
ix
4.5.1.1 Helplessness........................................................................................................74!
4.5.1.2 Hopelessness.......................................................................................................77!
4.5.1.3 Disengagement...................................................................................................78!
4.5.2 What do adult daughter caregivers for parents with dementia describe as
contributing factors and outcomes of compassion fatigue?.........................................79!
4.5.2.1 Contributing factors for compassion fatigue.................................................80!
4.5.2.2 Outcomes of compassion fatigue.....................................................................88!
4.5.3 How do adult daughter caregivers for parents with dementia vary in
characteristics of compassion fatigue and contributing factors and outcomes, and
what patterns emerge in this variation?..........................................................................91!
4.5.3.1 Previous relationship quality...........................................................................92!
4.5.3.2 Support................................................................................................................93!
4.5.3.3 Faith......................................................................................................................94!
4.6 Discussion........................................................................................................................95!
4.6.1 Characteristics of compassion fatigue....................................................................96!
4.6.2 Contributing factors of compassion fatigue..........................................................98!
4.6.3 Outcomes of compassion fatigue..........................................................................103!
4.6.4 Limitations................................................................................................................105!
4.6.5 Implications for Research.......................................................................................107!
4.6.6 Implications for Practice.........................................................................................109!
4.7 Conclusion.....................................................................................................................111!
5. Discussion...............................................................................................................................112!
5.1 Study 1: Review of the literature................................................................................114!
5.2 Study 2: Project ASSIST Secondary Analysis Pilot Study.......................................115!
5.3 Study 3: Compassion fatigue in adult daughter caregivers for parents with
dementia...............................................................................................................................116!
5.3.1 Characteristics and outcomes of compassion fatigue........................................117!
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