The Living Donor Study: The Concepts and Frames of Living Kidney Donors Aimee Catalan ...

268 Pages·2015·16.58 MB·English

The Living Donor Study:
The Concepts and Frames of Living Kidney Donors
Aimee Catalan Cunningham
Bachelor Science, University of Utah
Master Science Communication, University of Queensland

A thesis submitted for the degree of Doctor of Philosophy at
The University of Queensland in 2015
Communication and Arts
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Abstract

This thesis explores the concepts and frames of living kidney donors through
the use of recorded and transcribed conversations between living kidney donor
patients and their transplant team. It offers insight into the expectations of living
kidney donors as they prepare themselves to gift a kidney to someone they know.
Living kidney donor frames are represented as particularly resilient and well-defined,
shielding them from messages delivered by their transplant team. Those frames
incorporate their acceptance as living kidney donors, the risk to themselves and their
own personal definitions of autonomy and choice.
With the intention of using phenomenological discourse analysis to examine
the recorded and transcribed data, ten potential living kidney donors and their
recipients were invited to take part in a PhD project entitled the Living Donor Study at
the Princess Alexandra Hospital, in Queensland Australia. Transcriptions were
analysed using line-by-line and axial coding and living donor transcripts were
repeatedly compared with one another in order to reach an appropriate level of
saturation and provide evidence of re-emerging concepts and frames.
Data for the Living Donor Study were obtained during the living kidney donor’s
initial transplant assessment clinic visit. The purpose of this project was to examine
prospective accounts of the living donation experience using conversations with their
transplant team as opposed to using retrospective questionnaires and interviewing
methods. By eliminating much of the subjectivity that is common in ex post facto
interviews, I was able to identify many of the concepts that assist living kidney
donors in framing their experience and how those frames impact upon their
expectations of the transplant assessment clinic and their upcoming donation.
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Additional findings within the Living Donor Study include how fundamentally
different frames regarding informed consent and patient risk were exhibited by the
transplant team compared to those of the living kidney donor cohort. This created a
complex asymmetry that not only encompassed differing patient and clinician
expectations but also stemmed from the unusual dynamic of a healthy patient in
consultation with their doctor as opposed to a sick one seeking treatment.
This research assists in creating a better understanding of living kidney donor
expectations and will have implications with respect to how transplant experts may
choose to review their interactions with their donor patients. Further it identifies how
the tightly held living donation frames of the transplant team prevent them from fully
acknowledging the manner in which living kidney donor patients regard informed
consent, autonomy and personal choice.
Based upon the declarations made by living kidney donors during the
transplant clinic and the manner in which they volunteered information and answered
questions posed to them by their team, living kidney donors have a well-entrenched
set of expectations about their donation and their ability to manage their agendas
and perception of risk is well developed.

Declaration by author

This thesis is composed of my original work, and contains no material previously
published or written by another person except where due reference has been made
in the text. I have clearly stated the contribution by others to jointly-authored works
that I have included in my thesis.

I have clearly stated the contribution of others to my thesis as a whole, including
statistical assistance, survey design, data analysis, significant technical procedures,
professional editorial advice, and any other original research work used or reported
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in my thesis. The content of my thesis is the result of work I have carried out since
the commencement of my research higher degree candidature and does not include
a substantial part of work that has been submitted to qualify for the award of any
other degree or diploma in any university or other tertiary institution. I have clearly
stated which parts of my thesis, if any, have been submitted to qualify for another
award.

I acknowledge that an electronic copy of my thesis must be lodged with the
University Library and, subject to the policy and procedures of The University of
Queensland, the thesis be made available for research and study in accordance with
the Copyright Act 1968 unless a period of embargo has been approved by the Dean
of the Graduate School.

I acknowledge that copyright of all material contained in my thesis resides with the
copyright holder(s) of that material. Where appropriate I have obtained copyright
permission from the copyright holder to reproduce material in this thesis.
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Publications during candidature

No publications

Publications included in this thesis

No publications included

Contributions by others to the thesis

No contributions by others.

Statement of parts of the thesis submitted to qualify for the award of another
degree

None
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Acknowledgements

More than three years ago when I began to consider the Living Donor Study
and whether I was prepared to commit myself to such an undertaking, I attended an
afternoon of lectures given by the Graduate School at the University of Queensland.
The Dean of the Graduate School, Professor Zlatko Skrbis briefly spoke and one of
his messages, in particular, has stayed with me. He explained that the time
invested in PhD research would come at a cost. There would, at times, be feelings
of isolation, for only you would know your project intimately. Attempts to explain it
fully to someone else could lead to a stunned silence as the recipient of your beloved
patiently attempted to feign interest and understanding. Friendships would suffer as
you would be focussed on your project and there would be precious little time to
nurture the relationships of those close to you. There would be occasions when you
would ask yourself why you had ever committed to such a task. “But,” he said, “in
the end, the sense of accomplishment you would feel upon completion of you PhD
research would be unparalleled [sic].”
Over the course of my project, all of these things occurred at one time or
another and if not for the incredible support and guidance of those around me, my
journey would have certainly had a different outcome. I have had the honour of
working closely with two women who I hold in the highest regard. My advisors, Dr
Joan Leach, whose direct approach and clear vision has ensured that my focus
remained true, and Dr Susan McKay, whose strength of character and incredible
attention to detail is well balanced with her quiet words and nurturing manner, have
provided me with excellent direction while instilling within me a confidence to pursue
the Living Donor Study. I remain incredibly fortunate to know these inspirational and
intelligent women and my gratitude to both of them cannot be appropriately
conveyed on this page.
I am also extremely fortunate to have had the encouragement from the
University of Queensland and the school of English, Media Studies and Art History.
For though the Living Donor Study was a less traditional project for the school, the
support provided to me over the course of the research whether in guidance and
direction, or the regular meetings to discuss how the project was progressing, the
University has been exemplary and I am appreciative of the time and latitude
afforded they to my research over the years. Additionally, I extend appreciation to
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the Australian Post Graduate Award and the recognition that this research was worth
pursuing.
Throughout my studies, I have worked within Queensland Health whom
without the endorsement and support of my third advisor, Professor Jonathan
Fawcett, who acted as the clinical eyes within a social science project, Professor
Stephen Lynch, Chair of Surgery as well as my supervisors and colleagues within
the Division of Surgery and Medicine, Transplant Services and the Department of
Nephrology, none of this would have been possible. For many, this came in the form
of their participation in the Living Donor Study as they agreed to be recorded during
transplant clinic consultations and in doing so made their clinical practice and
communication style available for scrutiny and exploration.
Further gratitude must be extended to the living kidney donor patients and
their families. Their immediate acceptance of my invitation to participate and their
generosity and the open manner in which they communicated allowed me to record
their assessment discussions and helped to create an incredibly colourful, well
textured illustration of the living kidney donor experience. They are each in their own
way, people of resilience and courage and I am a better person for having had the
opportunity to learn from them.
Finally, I must acknowledge my family. For though it seems there are
feelings of isolation that accompany autonomous research such as this, it is only an
illusion. My family remained by my side at all times and the love, comfort and
balance they gave me and continue to give me fuels the strength and determination
to continue on and see the Living Donor Study to its conclusion. To my Mother I
must say simply, I love you. As an adopted child I often wondered about what the “if
things had been different” and “why you come to live with one family and not
another”. My Mother explained it in this way, “It was like going to the candy
store…Of all the candies I could have chosen, I chose the sweetest one and she
became my Aimee.” Her inner strength as a person and indomitable character
raised a daughter with determination and resolve and though the Living Donor Study
is the culmination of support from many people, it started with the a few words from
my Mother, “I know you can do it, so do it”.
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Keywords

Living kidney donation, transplantation, discourse analysis, patient frames, risk,
autonomy, choice

Australian and New Zealand Standard Research Classifications (ANZSRC)

ANZSRC code: 200101, Communication Studies, 35%
ANZSRC code: 200403, Discourse and Pragmatics, 25%
ANZSRC code: 220106, Medical Ethics, 40%

Fields of Research (FoR) Classification

FoR code: 2001, Communication and Media Studies, 60%
FoR code: 2201, Applied Ethics, 40%
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Table of Contents

1 Introduction
1.1 Project Genesis 14
1.2 Living Donor Study Focus 16
1.3 Concepts and Frames 20
1.4 Aims of the Living Donor Study 21
1.5 Practical Steps 23
1.6 Living Kidney Donor Stories 25
2 Literature Review
2.1 Patient Expectations 28
2.2 Communication Frames 31
2.3 Prinom Non Nocere: First Do No Harm 33
2.4 The Price of the Gift: Gift Giving, Exchange and Consequence 38
2.5 Ethical Considerations of Living Donation 44
2.6 Asymmetry 49
2.7 Framing the Living Kidney Donor 52
2.8 Conclusion 53
3 Methodology
3.1 Building on the Notion of Frames 55
3.2 Ethical Clearance and Considerations 56
3.3 Consent 57
3.4 Coercion vs Pressure to Participate 60
3.5 Living Kidney Donor Participant Background 61
3.6 Data Capture 62
3.7 Frames within Text Analytic Software 64
3.8 Grounded Theory vs Generic Inductive Qualitative Models 65
3.9 Transcription and Coding 68
3.10 Pinnacles and Pitfalls 70
3.11 Case Studies 71
3.12 Conversational Asymmetry 71
3.13 Conclusion 74
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4 Problems with Pair: Elements of Risk, Omission and Choice Through
Case Study Analysis
4.1 The Strongest of Donor Convictions 76
4.2 Access to Transplant Education Information 80
4.3 Falling on Deaf Ears 83
4.4 Case Studies 85
4.4.1 From Mother to Daughter . Case Study 1 85
4.4.2 The Choice Is Made: the Rest Is a Formality. 92
Case Study 2
4.4.3 All In a Day’s Work. Case Study 3 101
4.5 Discussion 107
4.6 Conclusion 110
5 The Risky Option
5.1 Risk vs Reward 112
5.2 Weighing Risk Against Benefit 114
5.3 Recovery and Long Term Complications 118
5.4 Minimising Risk Perception 119
5.5 The Urge to Donate 122
5.5.1 Autonomy and Informed Consent 132
5.5.2 Living Kidney Donor Benefit 134
5.5.3 The Illusion of Informed Consent 138
5.6 Conclusion 141
6 Good Decisions and Happy Choices
6.1 100% Committed: No Second Thoughts 143
6.2 Discounting the Severity of Risk for Happiness 146
6.3 Utility Frames: The Balance Between Giving and 148
Sacrifice
6.4 Impulsive and Reflexive Choices 152
6.5 Rationality and Good Decision-Making Frames: 156
The Doctor Weighs In
6.6 A Choice Already Made: The Assessment Interview 160
6.6.1 Competing Frames 163
6.7 Conclusion 165