Barriers and Resistance to Specialty Alcohol Treatment Amongst Alcoholic Liver Disease ...

357 Pages·2013·3.58 MB·English

by  Cathy Heyes

Copyright and use of this thesis
This thesis must be used in accordance with the
provisions of the Copyright Act 1968.
Reproduction of material protected by copyright
may be an infringement of copyright and
copyright owners may be entitled to take
legal action against persons who infringe their
copyright.
Section 51 (2) of the Copyright Act permits
an authorized officer of a university library or
archives to provide a copy (by communication
or otherwise) of an unpublished thesis kept in
the library or archives, to a person who satisfies
the authorized officer that he or she requires
the reproduction for the purposes of research
or study.
The Copyright Act grants the creator of a work
a number of moral rights, specifically the right of
attribution, the right against false attribution and
the right of integrity.
You may infringe the author’s moral rights if you:
- fail to acknowledge the author of this thesis if
you quote sections from the work
- attribute this thesis to another author
- subject this thesis to derogatory treatment
which may prejudice the author’s reputation
For further information contact the University’s
Director of Copyright Services
sydney.edu.au/copyright
BBaarrrriieerrss aanndd RReessiissttaannccee ttoo SSppeecciiaalliittyy
AAllccoohhooll TTrreeaattmmeenntt aammoonnggsstt AAllccoohhoolliicc
LLiivveerr DDiisseeaassee TTrraannssppllaanntt CCaannddiiddaatteess
PPrreecceeddiinngg aanndd FFoolllloowwiinngg LLiivveerr
TTrraannssppllaannttaattiioonn

Cathy Heyes
B.App.Sc (OT) MA (Drug and Alcohol Studies)

A thesis submitted in accordance with the requirements for
admission to the degree of
DOCTOR OF PHILOSOPHY

The University of Sydney
2013
1
Table of Contents

CANDIDATE’S STATEMENT .......................................... Error! Bookmark not defined.
RETENTION AND USE OF RESEARCH......................... Error! Bookmark not defined.
ABSTRACT .......................................................................................................................... 9
ACKNOWLEDGEMENTS................................................................................................. 11
LIST OF ABBREVIATIONS ............................................................................................. 12
LIST OF TABLES............................................................................................................... 13
LIST OF FIGURES ............................................................................................................. 15

CHAPTER 1 ........................................................................................................................ 17
Introduction ................................................................................................................. 17
Focus and aim of the study .......................................................................................... 19
Research question ........................................................................................................ 20
Overview of the research approach ............................................................................. 21
Study 1 ......................................................................................................................... 22
Study 2 ......................................................................................................................... 23
Significance of the research ......................................................................................... 23
Organisation of the thesis ............................................................................................ 23
References ................................................................................................................... 26

CHAPTER 2 ........................................................................................................................ 28
Orthotopic Liver Transplantation and end stage Alcoholic Liver Disease .................. 28
Alcoholic Liver Disease .............................................................................................. 28
Orthotopic Liver Transplantation ................................................................................ 33
Background to OLT ..................................................................................................... 33
Selection criteria .......................................................................................................... 35
The stages of liver transplantation ............................................................................... 37
An era of donor organ shortage ................................................................................... 38
End-stage Alcoholic Liver Disease and OLT .............................................................. 40
Key Developments in end-stage Alcoholic Liver Disease and OLT........................... 40
ESALD a leading but controversial indication for OLT ............................................. 42
Evaluation and selection of ESALD candidates: overview ......................................... 45
Alcohol Relapse ........................................................................................................... 47
Defining relapse ........................................................................................................... 47
Pre-transplant alcohol use ............................................................................................ 48
Alcohol use after transplantation ................................................................................. 49
Medical consequences of alcohol relapse after transplantation................................... 55
Psychosocial consequences of alcohol relapse post-OLT ........................................... 58
The 6 month rule as a predictor of abstinence ............................................................. 60
Limitations of relapse research .................................................................................... 61
Conclusion ................................................................................................................... 63
References ................................................................................................................... 64

2
CHAPTER 3 ........................................................................................................................ 75
Management and clinical characteristics of ESALD transplant candidates ................ 75
Clinical management of ESALD transplant patients ................................................... 75
Critical appraisal of current alcohol management programs ....................................... 76
Clinical characteristics of the ESALD transplant patient ............................................ 84
Alcohol use disorder subtypes ..................................................................................... 84
Alcohol use disorder and the ESALD transplant candidates ....................................... 88
ESALD transplant candidates and alcohol treatment seekers ..................................... 90
Conclusion ................................................................................................................... 94
References ................................................................................................................... 95

PART 1 STUDY ONE CASE CONTROL STUDY .......................................................... 101

CHAPTER 4 ...................................................................................................................... 102
Treatment resistance and treatment seeking .............................................................. 102
Theories of treatment resistance ................................................................................ 102
Denial ........................................................................................................................ 104
Substance abuse treatment seeking............................................................................ 105
Rates of treatment seeking for alcohol use disorders ................................................ 105
Models of treatment seeking ..................................................................................... 106
Aday and Andersen’s framework of access to health care ........................................ 106
Health Beliefs Model ................................................................................................. 108
Pathways to Care Model ............................................................................................ 109
Substance abuse models of treatment seeking ........................................................... 109
Stress and coping model ............................................................................................ 110
Transtheoretical model .............................................................................................. 111
Correlates of treatment seeking ................................................................................. 112
Problem recognition .................................................................................................. 113
Accumulation of negative life problems ................................................................... 114
Psychiatric problems ................................................................................................. 114
Severity of dependence and other drug use ............................................................... 114
Demographics ............................................................................................................ 115
Social Pressure ........................................................................................................... 115
Health problems ......................................................................................................... 116
Quality of life ............................................................................................................ 116
Stigma ........................................................................................................................ 116
‘Prefer to manage the problem myself’ ..................................................................... 117
Program attributes ..................................................................................................... 118
Temporal sequencing of treatment seeking ............................................................... 118
Recovery from substance dependence without treatment ......................................... 120
Research aim and design ........................................................................................... 122
The research question and hypotheses....................................................................... 123
Hypothesis 1 .............................................................................................................. 123
References ................................................................................................................. 126

CHAPTER 5 ...................................................................................................................... 137
Case Control Study - Method .................................................................................... 137
Study variables .......................................................................................................... 137
Participants and recruitment ...................................................................................... 138
Inclusion and exclusion criteria ................................................................................. 139
Study procedure ......................................................................................................... 141
Assessment measures ................................................................................................ 141
3
Demographics ............................................................................................................ 141
The Lifetime Drinking History (LDH) ...................................................................... 142
Mini-Mental State Examination (MMSE) ................................................................. 143
SIP 2-R ...................................................................................................................... 143
Short Alcohol Dependence Data (SADD) ................................................................. 143
Stages of Change Readiness and Treatment Eagerness Scale (SOCRATES 8A) ..... 144
History of Substance Use .......................................................................................... 145
Previous substance abuse treatment .......................................................................... 145
Health Beliefs ............................................................................................................ 146
Quality of Life Index (QLI) ....................................................................................... 147
High-Risk Alcoholism Relapse Scale (HRAR) ......................................................... 147
Help seeking .............................................................................................................. 148
Data management and statistical analysis ................................................................. 149
References ................................................................................................................. 150

CHAPTER 6 ...................................................................................................................... 154
Case Control Study - Results ............................................................................................. 154
Participants ................................................................................................................ 154
Hypothesis 1 .............................................................................................................. 154
Current alcohol use .................................................................................................... 155
Liver function tests .................................................................................................... 156
Past alcohol consumption .......................................................................................... 158
Past alcohol severity .................................................................................................. 160
Risk of relapse ........................................................................................................... 161
Readiness to change................................................................................................... 161
Health beliefs ............................................................................................................. 164
Past substance abuse .................................................................................................. 164
Psychiatric co-morbidity and Quality of life ............................................................. 165
Demographic Factors ................................................................................................. 166
Prior treatment ........................................................................................................... 168
Hypothesis 2 .............................................................................................................. 168
Indicators for alcohol treatment amongst ESALD transplant patients ...................... 170
ESALD post-transplant abstainers and relapsers....................................................... 170
ATS and ESALD relapsers ........................................................................................ 173
Conclusion ................................................................................................................. 177
References ................................................................................................................. 178

CHAPTER 7 ...................................................................................................................... 179
Case Control Study - Discussion ............................................................................... 179
Absence of need factors ............................................................................................. 179
Motivation, health beliefs and abstinence ................................................................. 180
A less severe alcohol problem ................................................................................... 182
Psychiatric co-morbidity ........................................................................................... 184
Social resource ........................................................................................................... 185
Barriers to treatment seeking ..................................................................................... 185
Indications that treatment is required ........................................................................ 187
Study Strengths .......................................................................................................... 188
Limitations ................................................................................................................. 189
Conclusion ................................................................................................................. 192
References ................................................................................................................. 194

4
PART 2 STUDY TWO IN-DEPTH INTERVIEW STUDY ........................................... 200

CHAPTER 8 ...................................................................................................................... 201
Harmful alcohol use, stigma and treatment: a review of the literature...................... 201
The Sociology of Chronic illness .............................................................................. 202
What is stigma? Erving Goffman and the creation of ‘spoiled identities’ ................ 203
Health-related stigma research .................................................................................. 204
Chronic Illness and Stigma ........................................................................................ 206
Harmful alcohol use and stigma ................................................................................ 207
Stigma and alcohol treatment seeking ....................................................................... 208
Social identity theory ................................................................................................. 210
Social categorization and prototypes ......................................................................... 211
Honneth and mutual recognition ............................................................................... 212
Self-management and self-transcendence ................................................................. 214
Medicine, stigma and harmful alcohol use: the way forward.................................... 215
Conclusion ................................................................................................................. 217

CHAPTER 10 .................................................................................................................... 247
Management programs for ESALD transplant candidates patient experiences ........ 247
Characteristics of the participants.............................................................................. 247
Thematic analysis of interview data .......................................................................... 250
i) The contract – ‘a gift with conditions’ .................................................................. 252
ii) Abstinence as a do-it-yourself process ................................................................. 254
Relapse prevention skills ........................................................................................... 257
Self-transcendence ..................................................................................................... 258
Relationship with transplant staff .............................................................................. 260
Mobilizing social resources ....................................................................................... 261
Treatment resistance amongst successful abstainers ................................................. 261
iv) Fear of stigma ...................................................................................................... 268
Fear of disappointing staff ......................................................................................... 271
Fear of penalty ........................................................................................................... 273
v) No available and suitable alcohol support program ............................................. 273
‘The gap in the program’ and lack of candour .......................................................... 273
Living with the chronic illness of harmful alcohol use ............................................. 275
‘Wanting to talk to someone’ .................................................................................... 277
The contract and other key themes ............................................................................ 280
Preferred treatment .................................................................................................... 280
Conclusion ................................................................................................................. 281
References ................................................................................................................. 283

CHAPTER 11 .................................................................................................................... 284
In-depth interview study - Discussion ............................................................................... 284
Fear of stigma associated with alcohol treatment ...................................................... 284
Abstinence as a ‘do-it-yourself’ process ................................................................... 288
No available and suitable alcohol support program .................................................. 290
Limitations of the study ............................................................................................. 291
Directions for future research .................................................................................... 292
Conclusion ................................................................................................................. 292
References ................................................................................................................. 294

5
CHAPTER 12 .................................................................................................................... 297
Conclusion and Recommendations ................................................................................... 297
Factors contributing to resistance to alcohol treatment ..................................................... 297
Alcohol treatment recommendations ................................................................................. 299
Program Components ........................................................................................................ 300
Conclusion ......................................................................................................................... 304

APPENDIX A- Models of treatment seeking .................................................................... 306
APPENDIX B –Sydney South West Area Health Service Ethical Approval ................... 309
APPENDIX C Research flyer for ESALD transplant participants .................................... 311
APPENDIX D Information for participants and consent form ......................................... 314
APPENDIX E Assessment Measures ................................................................................ 318
APPENDIX F Interview guide and table of themes .......................................................... 351

6
7
8
ABSTRACT

End stage alcoholic liver disease (ESALD) is a leading yet controversial indication for
orthotopic liver transplantation (OLT). Around one third of these patients will return to
harmful alcohol use after transplantation, against medical advice. Relapse to harmful
drinking contributes to mortality, morbidity and poor quality of life for the individual and
impacts on the reputation of the program. Despite the availability of established alcohol
treatment, ESALD transplant patients avoid such services. The current research investigated
the barriers to and reasons for treatment resistance amongst ESALD transplant patients. A
mixed method approach was utilized, consisting of a quantitative prospective case control
study and a qualitative in-depth interview study.
The case control study compared 40 ESALD transplant patients (cases) matched for age and
sex with 40 alcohol treatment seekers without liver disease (controls). The aim of the study
was to identify barriers and reasons for treatment resistance by ESALD transplant patients
in comparison with alcohol treatment seekers. The qualitative in-depth interview study
involved semi-structured interviews amongst 42 ESALD transplant candidates. The aim
was to illuminate the cognitive processes, experiences and understandings of ESALD
transplant participants regarding abstinence, alcohol relapse, and alcohol treatment seeking
in the context of liver transplantation.
The results of the case control study showed that ESALD transplant patients perceive no
need for treatment due to their lengthy abstinence and high motivation for change. Standard
alcohol interventions are not tailored to the ESALD transplant population as they differ
from ATS on alcohol severity, health beliefs, psychiatric co-morbidity and quality of life.
No differences were found between the two groups with regard to HCV, co-morbid
substance abuse and education levels. Barriers to help seeking amongst ESALD transplant
subjects consisted of possible fear of stigma and limited access to alcohol services.
The in-depth interview study found 62% of ESALD transplant participants reporting stigma
to be a major deterrent to utilizing specialty alcohol treatment because of its association
with the label ‘alcoholic’ and its inconsistency with the criteria for membership of a group
prototype of ideal transplant candidates. Self-management by ESALD transplant
participants to achieve substantial abstinence removed the necessity for professional
support services. Abstainers were strongly supported by intimate partners, social networks
9