From Sickness to Badness: The Power of Labels on the Path to Kidney Transplantation Restricted; Files Only

Abstract

For most patients with end-stage kidney disease (ESKD), kidney transplant offers increased

survival, better quality of life, reduced hospitalization, and lower cost compared with dialysis.

The path to kidney transplant is complex, often requiring patients to interact with multiple health

systems (e.g., dialysis clinics and transplant hospitals) as they navigate different steps in the

transplant process. For many patients, this process begins when they are referred to a transplant

center by a member of their interdisciplinary dialysis team. Not all eligible patients are referred

to a transplant center for evaluation, however. Though the referral stage represents a necessary

and critical step in patients’ access to kidney transplant, few studies examine how members of

interdisciplinary dialysis teams make transplant referral decisions.

This dissertation examines how dialysis care professionals (DCPs) assess patients and make

referral decisions. The first chapter explores how DCPs make judgments about patients’

eligibility for kidney transplantation and how these judgments inform their referral decisions.

Using a grounded theory approach and data from in-depth interviews with 39 DCPs, this study

shows that these professionals categorize patients and use these categories to inform their referral

decisions. The second chapter expands on these findings to explore how DCPs understand their

role in the transplant process. This study spotlights how DCPs incorporate broader logics into

their professional role identities and how these identities influence their referral practices. The

third chapter explores how patients with ESKD understand and make meaning of non-

compliance and how this construct shapes their health care experiences. This study documents

the various meanings patients attach to compliance and the significant implications this label

carries for patients.

Table of Contents

Introduction……………………………………………………………………………… 1

Chapter 1: ‘If You’re Not Motivated, I Don’t Know What Kind of Candidate You

Would Be Anyway’: Examining Dialysis Care Professionals’ Transplant Referral

Decisions………………………………………………………………………………….. 11

Introduction…………………………………………………………………………. 12

Data and Methods…………………………………………………………………… 17

Analysis……………………………………………………………………………... 21

Results………………………………………………………………………………. 23

Discussion…………………………………………………………………………… 39

References…………………………………………………………………………... 42

Chapter 2: ‘They Tell Me to Refer Everyone, But I Know What I’m Doing’: Logics,

Identity, and Decision-Making in Dialysis Clinics………………….…………….……. 46

Introduction…………………………………………………………………………. 47

Background and Theory…………………………………………………………….. 51

Data and Methods…………………………………………………………………… 60

Analysis……………………………………………………………………………... 65

Results………………………………………………………………………………. 68

Discussion…………………………………………………………………………… 89

References…………………………………………………………………………... 95

Figure 1. Ideal Typical Logics ……………………………………………………… 103

Chapter 3: ‘It’s Such a Scary Label for People at the Mercy of the Medical

System’: Dialysis Patients’ Perceptions of Non-Compliance in the Context of

Kidney Transplantation ………………………………………………………………… 104

Introduction…………………………………………………………………………. 105

Data and Methods…………………………………………………………………… 110

Analysis……………………………………………………………………………... 114

Results………………………………………………………………………………. 116

Discussion…………………………………………………………………………… 137

References…………………………………………………………………………... 140

Conclusion………………………………………………………………………………... 145

About this Dissertation

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• Permission granted by the author to include this thesis or dissertation in this repository. All rights reserved by the author. Please contact the author for information regarding the reproduction and use of this thesis or dissertation.

School	Laney Graduate School
Department	Sociology
Degree	Ph.D.
Submission	Dissertation
Language	English
Research Field	Sociology, General Sociology, Organization Theory Health Sciences, General
Keyword	Kidney Transplantation Health Services Research Organizational Theory End-Stage Kidney Disease Health Care Inequities
Committee Chair / Thesis Advisor	Adam Wilk, Ph.D., Indiana University Ellen Idler, Ph.D., Emory University
Committee Members	Heeju Sohn, Ph.D., Emory University Monique Hennink, Ph.D., Emory University

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