Living with End-Stage Heart Failure: An Interpretive Phenomenological Study

230 Pages·2012·5.15 MB·English

Living with End-Stage Heart Failure: An Interpretive Phenomenological
Study
by
Reid Brian Love

A Thesis submitted to the Faculty of Graduate Studies of
The University of Manitoba
in partial fulfillment of the requirements of the degree of

MASTER OF NURSING

Faculty of Nursing
University of Manitoba
Winnipeg

Copyright © 2012 by Reid Brian Love
i

TABLE OF CONTENTS
ABSTRACT iv
LIST OF APPENDICES v
LIST OF TABLES vi
ACKNOWLEDGEMENTS vii

CHAPTER ONE: INTRODUCTION 1

Introduction 1
Significance of the problem 1
Purpose of the study 2
Research question 2
Assumptions 3
Definition of major constructs 5
Chapter summary 8

CHAPTER TWO: LITERATURE REVIEW 9

Introduction 9
The Canadian population and chronic illness 9
Heart failure 10
End-stage heart failure 13
Living with heart failure 13
Palliative care 17
Palliative care in end-stage heart failure 18
Chapter summary 21

CHAPTER THREE: THEORETICAL FRAMEWORK 22

Introduction 22
The human response to illness (HRTI) model 22
The appropriateness of the HRTI model for this study 23
Chapter summary 24

CHAPTER FOUR: METHODOLOGY 26

Introduction 26
Research design 26
Interpretive phenomenology 26
The philosophical underpinnings of interpretive phenomenology 27
The appropriateness of interpretive phenomenology for this study 29
Photovoice 30
The appropriateness of Photovoice for this study 31
ii
Sample 32
Inclusion criteria 32
Exclusion criteria 33
Sample size 33
Recruitment setting 33
Study Procedures 34
Data collection methods 36
Demographics 36
Phenomenological interviews 37
Photographs 39
Interviews about the photographs 39
Ethical considerations 40
Ethics/ Review board approval 40
Vulnerable population s 40
Confidentiality 41
Anonymity 41
Data analysis 41
Demographic data 41
Thematic analysis – interpretive phenomenology 42
Content analysis – Photovoice 44
Methodological rigor - trustworthiness 45
Credibility 45
Dependability 46
Confirmability 46
Transferability 48
Triangulation 48
Chapter summary 48

CHAPTER FIVE: FINDINGS OF THE STUDY 50

Introduction 50
Description of the study participants 50
Main findings 53
Summary of the overall participant experience 54
The essence of living with ESHF: Working to preserve
a sense of self 54
Themes supporting the essence 58
The work of managing a failing and unreliable body 58
The work of choreographing daily living 66
The work of charting the final chapter of one’s life 79
Themes discovered from the Photovoice interviews 87
Living with a failing and unreliable body 88
The work of choreographing daily living 94
The work of charting the final chapter of one’s life 102
Chapter summary 105
iii

CHAPRTER SIX: DISCUSSION OF THE FINDINGS 106

Introduction 106
Main findings 106
The essence of living with ESHF: Working to preserve
a sense of self 106
Major themes 118
The work of managing a failing and unreliable body 119
The work of choreographing daily living 136
The work of charting the final chapter of one’s life 150
Recommendations 174
Implications for nursing practice 174
Implications for nursing education 179
Implications for nursing research 181
Limitations of the study 183
Chapter summary 184

REFERENCES 185

APPENDICES 204
iv
ABSTRACT
A qualitative phenomenological study incorporating Photovoice was conducted to
gain insight into the lived experience of patients with end-stage heart failure (ESHF).
Seven participants were recruited and in-depth open-ended interviews were conducted
with all participants. Three of the seven informants also opted to take part in the
Photovoice portion of the project. “Working to preserve a sense of self” emerged as the
essence of living with ESHF and was supported by three themes: i) the work of managing
a failing and unreliable body, ii) the work of choreographing daily living; and iii) the
work of charting the final chapter of one’s life. The findings from this study provide
healthcare professionals with empirically grounded information and insights about the
needs and everyday challenges individuals living with ESHF experience, and how
clinicians can best support them. Such information is essential in order to plan
meaningful, holistic, evidence-based care for ESHF patients.

Keywords: end-stage heart failure, lived experience, qualitative research, phenomenology
v
LIST OF APPENDICES
Appendix A: Staging of Heart Failure and its Associated Step-Up
Management Strategy 204
Appendix B: New York Heart Association (NYHA) Classification
of Heart Failure 205
Appendix C: Staging of Heart Failure 206
Appendix D: Human Response to Illness (HRTI) Model 207
Appendix E: Ethical Approval from Education/Nursing Research Ethics
Board 208
Appendix F: Access Approval from St. Boniface General Hospital
Research Review Committee 209
Appendix G: Recruitment Poster 210
Appendix H: Information Sheet 211
Appendix I: Information and Consent Form 213
Appendix J: Demographic Data Collection Form 218
Appendix K: Semi-Structured Interpretive Interview Guide 220
Appendix L: Photovoice Interview Guide 222
vi
LIST OF TABLES
Table 1: Participant Demographics 52
vii
ACKNOWLEDGEMENTS
The author would like to acknowledge and thank the many individuals and
agencies who have helped and supported in the completion of this thesis. Without your
assistance this research project would not have been initiated or completed. I extend my
gratitude to each and every one of you. Thank you.

To Dr. Susan McClement, my thesis chairperson: Thank you for not only sharing
your expertise in qualitative research, care of the chronically ill and end of life care, but
for also keeping me on track during my research and reinforcing that one must seek out,
cherish and enjoy the happy times in life. From your mentoring I have learned a
tremendous amount about interpretive phenomenology and the research process in
general. Most importantly thank you for your patience and unending support.

To Dr. Jo-Ann Sawatzky, my internal thesis committee member: Thank you for
sharing your expertise in cardiovascular nursing, care of the chronically ill and also in the
research process and the design of this research study.

To Dr. Mike Harlos, my external thesis committee member: Thank you for your
expertise in end of life care beyond cancer patients and for your guidance during the
design of this research project.

To the staff of the Heart Failure Clinic at St. Boniface General Hospital: Thank
you for assisting in the recruitment of participants for this research study, without you
participants would not have been referred to this important research.

To those who agreed to participate in this research project: Thank you for
agreeing to speak with me and for openly and honestly discussing such a difficult topic
and identifying the every day work that is involved in living with ESHF. Without your
insight change would not be possible.

To my wife and family: Thank you for your unwavering support over the last two
years. Although at times life became difficult your support and assistance aided in seeing
the light and completing this thesis research. I hope none of you develop ESHF, but
should it be the case I hope that my research will have changed the way care for you is
provided.

To my coworkers at Victoria General Hospital: Thank you for your support and
for saying “Go home, take the day and get it done – We will cover you.”

To the Fort Garry Royal Canadian Legion Poppy Trust Fund and the Keith & Irene Beard
Endowment Fund at the Victoria General Hospital: Thank you for your scholarship
funding. Without your financial support the researcher would be responsible to
independently bear all the costs associated with research and in many cases research
would not be possible.
1
CHAPTER 1: INTRODUCTION

Introduction
Aging of the population, technological advances, and improved options for
managing heart failure (HF) have contributed to increasing numbers of Canadians
suffering from end-stage disease. Current statistics demonstrate that HF afflicts at least
400,000 Canadians, with more than 50,000 newly diagnosed cases each year and an
annual mortality rate of 25% to 40% (Turris & Rauscher, 2005). Despite numerous recent
medical advances, no cure exists for HF; consequently, it is progressive and irreversible.
As a result, the present goal in the medical management of HF is to control the patients’
symptoms and delay the progression of the disease.
Living with HF and its associated management strategies is a reality for many
individuals, and research has demonstrated that living with HF dramatically changes
one’s life. However, despite knowing that HF is progressive and lethal, research
identifying what it is like to live with end-stage heart failure (ESHF) is limited.
A phenomenological research design is optimally suited to better understand the
experiences of those living with ESHF. Phenomenology strives to develop a rich
understanding of what living that specific experience is like for the individual (Speziale
& Carpenter, 2007). For this study an interpretive phenomenological approach was
employed to discover insights into what it is like to live with ESHF on a daily basis.
Significance of the Problem
The progression of HF results in an illness trajectory encompassing a substantial
degree of physical and psychological suffering, and a reduced quality of life (QOL)
(Coats, Clarck, Piepoli, Volterrani, & Poole-Wilson, 1994). Once these patients reach
2
end-stage disease, they require specialized cardiac and palliative care (PC) to manage
their symptoms, maximize their QOL, and to assist them and their family through the
terminal stages of HF. Unfortunately, the vast majority of ESHF patients do not receive
specialized PC services (Gaudette et al., 2002; Murray et al., 2002).
Studies are lacking that detail the subjective experience of individuals living with
ESHF. If nurses hope to optimize the care that they provide to these patients, they must
first be knowledgeable about how patients perceive and deal with living with advanced
end-stage heart disease. In order to understand how the ESHF experience is expressed
and represented by patients, healthcare professionals need to provide these individuals
with the opportunity to share the stories of their experiences in their own words. Giving a
voice to ESHF patients’ experience of their illness and the meanings they ascribe to it
could make a difference in the way members of the healthcare team understand and
respond to patient care needs, and how they support patients in the end stages of their
illness trajectory.
Purpose of the Study
The purpose of this phenomenological study was to develop an understanding of
the lived experience of ESHF through eliciting detailed descriptions of patients’ lived
experiences of ESHF. The focus was on discovering what it was like for an individual to
live with ESHF on a daily basis and how living with ESHF impacted the individual’s life
overall.
Research Question
Consistent with a phenomenological approach to inquiry, the overarching research
question guiding this study was ‘What is it like to live with ESHF?’ The major sub