Table Of ContentThe new normal:
A Bourdieusian examination of living into young adulthood being a
paediatric heart transplant recipient
by
Oliver Mauthner
A thesis submitted in conformity with the requirements
for the degree of Doctor of Philosophy
Lawrence S. Bloomberg Faculty of Nursing
University of Toronto
© Copyright by Oliver Mauthner 2014
The new normal:
A Bourdieusian examination of living into young adulthood being a
paediatric heart transplant recipient
Oliver Mauthner
Doctor of Philosophy
Lawrence S. Bloomberg Faculty of Nursing
University of Toronto
2014
Abstract
Improved success of paediatric cardiac transplantation has resulted in increased survival of
recipients into young adulthood (19 to 29 years of age). Young adults who received ah eart
transplant during childhood have experienced multiple life sustaining procedures. As survival
and longevity increase, it is clear that transplant recipients experience negative physiologica l,
psychological and social sequelae. With heart transplant offering individuals a chance to extend
life into young adulthood, recipients need lifelong care and at age 18 they will transition from
paediatric to adult healthcare facilities.T he study addressed young adults circumstances of
existence and their competing interests wiht in various social environments. This research project
applied Pierre Bourdieu’s theoretical concepts of habitus, field and capital, to conceptualize and
engage with empirical knowledge production about young adults who have received ah eart
transplant during childhood. Using visual methodology, focused open-ended interviews were
conducted with 12 young adults who had a heart transplant during childhood. Bourdieu’s work
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provided a theoretical framework to investigate transplant recipients’ identities and social re-
positioning in relation to dominant discourses of organ transplant and shifting relationships with
health services providers. This study involved an iterative process to identify recipients’
encounters and new compositions in relation with others, in order to answer the research
objective. These findings highlight that young adult transplant recipients struggle with relational
dispositions that excludes them from various fields of social engagement; their struggle and
exclusion from various fields is symbolic and is embedded in the structure of the dominant social
order of the field from where they become excluded; the social order is taken up and embodied,
leading young transplant recipients to practices of accommodation and “normalization”. Changes
in healthcare practices, attuned to person implications and peer relationships can begin to address
young transplant recipients’ contradictory social positions. Such an approach can potentially lead
to improvement in ongoing care and services for young adults who require a lifetime of care. At
the same time, it will allow nurses to better prepare and counsel young individuals who are
preparing for a heart transplant.
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ACKNOWLEGMENTS
Over the past five years I have received support and encouragement from a great number of
individuals.
First and foremost, I am immensely indebted to my supervisor Dr. Jan Angus, her unwavering
support and commitment to the project. Her respectful and thought provoking approach
represents the best of what one seeks in a mentor.
I also owe a debt to my committee members who have contributed immensely over the last five
years as I moved from an idea to a completed study. I would like to thank Dr. Denise Gastaldo
for her insightful guidance and for giving so generously of her time. Dr. Heather Ross, who has
been both a mentor and colleague. Her guidance has made this a thoughtful and rewarding
journey.
During data collection and writing Enza DeLuca spent countless hours proofreading and
listening to me talk about my research. Stella Kozuszko helped with the recruitment of study
participants and provided needed encouragement and insights. Maki Iwasi, Shan Mohammed and
Craig Dale, fellow doctoral students at the University of Toronto, helped me through the school
year as I tried to juggle teaching and completing my dissertation. Fellow graduate students were
immensely important in helping sort through social theory and test new ideas in the work.
I would also like to thank my teachers Dr. Patricia McKeever and Dr. Francine Wynn for getting
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me started in the doctoral program and generously sharing their time and ideas. I have learned
much through our conversations and you both have contributed tremendously to my development
as a scholar.
My family has never ceased to express pride in my work and accomplishment, which has
sustained me in so many ways. I appreciate their interest in my intellectual journey and unending
love. Thanks to David Clemmer for giving me a push to get started.
Finally, I owe a debt of gratitude to the 12 study participants who shared their incredible stories
and from whom I have learned much about their lives.
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TABLE OF CONTENTS
ABSTRACT………………………………………………………………………………. ii
ACKNOWLEDGMENTS………………………………………………….……………. iv
CHAPTER 1: INTRODUCTION
Introduction………………………………………………………………………… 1
Introduction to paediatric heart transplant…………………………………...…… 2
Problem statement & study purpose…………………………………………..…… 6
Theoretical orientation……………………………………...…………………..…. 6
Methods……………………………………………………………….…………… 7
CHAPTER 2: THE LITERATURE AND STATEMENT OF THE PROBLEM
Introduction………………………………………………………………...………. 9
I. Clinical course of paediatric transplant recipients: review of physiological,
psychological, and social outcomes……………………………………………...… 10
Physiological outcomes……………………………………………..……... 10
Psychological outcomes…………………………………………..………... 15
Social outcomes……………………………………………….……........… 16
II. Transition from a paediatric to an adult healthcare facility………….……......... 21
III. Young adults who have received a paediatric heart transplant……………..…. 23
IV. Adult transplant recipients…………………………………………….............. 25
Chapter Summary…………………………………………………………….......... 29
CHAPTER 3: THEORETICAL PERSPECTIVE
Introduction………………………………………………………………………… 31
Being reflexive of events that impacted my thinking…………………...……….… 31
Pierre Bourdieu and his concept of habitus…………………………………...…… 34
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Field………………………………………………………………………...……… 38
Capital……………………………………………………………………………… 40
Habitus and Hexis…………………………………………………………..……… 44
Current uses of habitus, field and capital in health sciences………………..……... 45
Critical analysis of potential limitations of Bourdieu’s concepts………………..… 46
Chapter Summary………………………………………………………...………. 47
CHAPTER 4: METHODOLOGY
Introduction………………………………………………………………………… 49
The goals of the study were……….…………………………………………..…… 50
Research design………………………………………………………………….… 50
Data collection ………...……………………………………………………...…… 50
Recruitment ………..……………………………………………………………… 51
Sample size………………………………………………………………………… 52
Inclusion criteria…………………………………………………………………… 52
Exclusion criteria……………………………………………………………...…… 52
Data recording……………………………………………………………………… 53
Data management ………….….…………………………………………...……… 56
Data analysis ………………...……………………………………………..……… 57
Methodological rigor…………………………………………………………….… 61
Criteria for judging research quality……………………………………………..… 62
Ethical considerations……………………………………………………………… 62
Risks…………………………………………………………………..…… 62
Benefits…………………………………………………………………..… 63
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CHAPTER 5: RESULTS
Part One: Youth in the heart of an adult world
Introduction………………………………………………………………………… 64
I/a. Life put on hold: becoming ill…………………………………………………. 66
Introduction………………………………………………………………… 66
Results………………………………………………………….…………… 67
.
I/b. Life put on hold: recovering from heart transplant…………………………….. 72
Summary……………………………………………………….…………… 74
II. Everyday routines in the clinic and at home……………………………………. 75
Introduction………………………………………………………………… 75
Results………………………………………………………………………. 75
Summary………………………………………………………….………… 82
III. Youth, young adulthood and the process of transition…………………………. 83
Introduction………………………………………………………………… 83
Results………………………………………………….…………….……… 83
Summary………………………………………………….………………… 89
IV. Rite-of-Passage………………………………………………………………… 89
Introduction………………………………………………………………… 89
Results…………………………………………………….………………… 90
Summary…………………………………………………….……………… 93
Chapter Summary…………………………………………………………..……….. 94
Part Two: Fields of struggle: Transplant recipients’ relational positions with other
dominant fields
Introduction…………………………………………………………………………. 96
I/a. It is not a big deal: It’s just part of growing up…………………………………. 98
Introduction………………………………………………………………….. 98
Results……………………………………………………………………….. 98
I/b. Body-work………………………………………………………………………. 106
Summary…………………………………………………………………….. 109
II. The new “normal”………………………………………………………………... 110
Introduction………………………………………………………………….. 110
Results……………………………………………………………………….. 110
Summary………………………….………………………………………….. 123
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III. Changing biographies in midst of a healthy peer field………………………….. 124
Introduction………………………………………………………………….. 124
Results……………………………………………………………………….. 125
Summary……………………………………………………………………... 127
Chapter Summary………………………………………………………………….. 128
CHAPTER 6: DISCUSSION
Introduction………………………………………………………………………… 131
I. Young adult transplant recipients struggle with relational dispositions excludes them
from various fields of social engagement………………………………………….. 133
Social capital and well-being………………………………………………. 133
How the paediatric clinic fosters a habitus of passivity among
young transplant recipients…………………………………………………. 137
The enduring effects of habitus at the time of transition……………….…… 139
II. Recipients struggle and exclusion from various fields is embedded in the structure of
the dominant social order
Dominant social order and the field of power……………………………….. 142
Gendered hexis………………………………………………………………. 147
III. The social order is taken up and embodied, leading young transplant recipients to
practices of accommodation
Being “normal”………………………………………………………………. 151
Being lost in the new “normal”……………………………………………… 156
IV. Changes in healthcare practices, attuned to person implications and peer relationships
can begin to address young transplant recipients’ contradictory positions
Change in the young adult transplant clinic………………………………….. 159
Chapter Summary………………………………………………………………………161
CHAPTER 7: CONCLUSION
Overview of study……………………………………………………………………. 163
Theoretical Contribution……………………………………………………………... 167
Practical Contribution………………………………………………………………... 171
Research Contribution……………………………………………………………….. 174
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Criteria for judging research quality…………………………………………………. 177
Fairness………………………………………………………………………. 177
Catalytic and tactical authenticity……………………………………………. 180
Reflexivity……………………………………………………………………. 181
Study limitations……………………………………………………………………… 184
References…………………………………………………………………………...… 186
LIST OF APPENDICES
Appendix A: Ethics Review…………………………………………………………… 209
Appendix B: Recruitment Package …...…….……………………………………........ 211
Appendix C: Interview Questions………………………………….......………...…… 220
Appendix D: Timeline…….……………………………………………….………..… 223
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