living well with chronic pain

394 Pages·2015·4.05 MB·English

LIVING WELL WITH CHRONIC PAIN: A
CLASSICAL GROUNDED THEORY
Bronwyn F Lennox Thompson

A thesis submitted in fulfilment of the requirements for the
Degree of Doctor of Philosophy in Health Sciences
in the University of Canterbury

University of Canterbury
2014
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Living well with chronic pain: A classical grounded theory

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Living well with chronic pain: A classical grounded theory
Abstract

Chronic pain is a public health problem that is likely to increase as the population ages,
and has few effective treatments. Although viewed by many as profoundly distressing and
disabling, there are a surprising number of people (approximately 30%) who cope well with
their chronic pain and do not continue to seek treatment. There is little theory to explain
how and why these individuals manage their pain well. This means there is limited
knowledge about the approaches used by people who cope well and whether these
strategies could help those who have more difficulty.
This thesis presents a substantive grounded theory of living well with chronic pain, the
theory of re-occupying self. Seventeen individual interviews were recorded, with data
collection, analysis and theory generation following classical grounded theory
methodological approach. Constant comparison, theoretical sampling, theoretical coding,
and theoretical sensitivity were used to identify the main concern of people who cope well
with pain. This concern is achieving self-coherence, and is resolved by re-occupying self.
Resolution involves making sense to develop an idiographic model of their pain; deciding
to turn from patient to person, facilitated or hindered by interactions with clinicians and
occupational drive; and flexibly persisting where occupational engaging and coping allow
individuals to develop future plans. By completing this process, individuals form a
coherent self-concept in which they re-occupy the important or valued aspects of
themselves.
This study supports using Acceptance and Commitment Therapy because of its functional
contextual view of people and their actions. This study illustrates that coping strategies
are used in different ways depending on the primary goal within that context. Occupations,
or active; purposeful; meaningful; contextualised and human activities, are used by people
to make sense of their situation, and as a key motivation for developing coping strategies.
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Living well with chronic pain: A classical grounded theory
These findings lead to new research questions about values-aligned activity, coping with
identity change, and acceptance.
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Living well with chronic pain: A classical grounded theory
Acknowledgements
Completing a Doctorate is a tribute to persistence. Obstacles during this one have
included maintaining parenting and work commitments, coping with post-concussion
syndrome, the tragic 2010-11 earthquakes in Canterbury, and in the final stages, moving
into a caravan while our house was being repaired. Needless to say, that it has been
completed is only due to the support, encouragement and occasional pointed comment
from those around me.
Of particular mention are the efforts of my supervisors, Dr Jeff Gage and Dr Ray Kirk, who
have been unfailingly kind in keeping me on track; my colleagues at both Burwood Pain
Management Centre, and Department of Orthopaedic Surgery and Musculoskeletal
Medicine at University of Otago in Christchurch; and my partner and family who have
shown a remarkable tolerance for takeaway meals, a messy house and pain as
appropriate subject matter for dinner conversation.
To my partner Bo, who has been the inspiration for asking how people who cope well with
pain solve the problem of getting on with life – thank you for your patience.
To Andrew and Louise, who reminded me so often that I need to get on with it.
To Nick and Steve, who first helped me find my academic confidence.
To Arthritis New Zealand, and especially Suzanne Croft, who allowed me to ask for
participants for this research.
To the participants, who inspired, refreshed and challenged me to understand flexibly
persisting, and re-occupying self.
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Living well with chronic pain: A classical grounded theory
Table of Contents
Living well with chronic pain: A classical grounded theory ............................................................................... i
Abstract ................................................................................................................................................................................................... iii
Acknowledgements ........................................................................................................................................................................ v
Table of Contents ............................................................................................................................................................................. vi
List of Figures....................................................................................................................................................................................... x
Chapter One - Learning from those who live well with chronic pain.......................................................... 1
Introduction ...................................................................................................................................................................................... 1
Reasons for learning from those who identify themselves as “well” despite pain ............. 3
The unknown ............................................................................................................................................................................ 4
Why is chronic pain such a challenging problem? ......................................................................................6
Why have people who are apparently living well with pain not been studied? ................... 13
The paradox of expectation ......................................................................................................................................... 15
What can be assumed about people who manage pain well? ......................................................... 16
Coping enables occupation and living well ..................................................................................................... 17
The need for a mid-range theoretical explanation for living well with chronic pain ...... 20
What is distinctive about a new theoretical explanation for coping well with chronic
pain? ............................................................................................................................................................................................. 22
Features of this thesis .................................................................................................................................................... 23
What this thesis is not ................................................................................................................................................... 26
What this thesis is .............................................................................................................................................................28
Significance of the study ..............................................................................................................................................28
Overview of the thesis ................................................................................................................................................... 29
Conclusion ..................................................................................................................................................................................... 32
Chapter Two - Pain ........................................................................................................................................................................ 33
Introduction............................................................................................................................................................................. 33
Pain is subjective ................................................................................................................................................................ 34
Defining pain and ongoing debates .......................................................................................................................... 35
Distinguishing between pain and disability ................................................................................................... 41
The problem of chronic pain ..................................................................................................................................... 46
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Living well with chronic pain: A classical grounded theory
Historical models of pain ............................................................................................................................................ 50
Models of pain ...................................................................................................................................................................... 55
Introducing social context .......................................................................................................................................... 64
Attitudes towards pain .................................................................................................................................................. 65
Ethics and managing pain .......................................................................................................................................... 68
Treatment seeking and pain ...................................................................................................................................... 75
Managing pain ........................................................................................................................................................................... 80
Coping .......................................................................................................................................................................................... 81
Behavioural approaches ................................................................................................................................................ 81
Cognitive behavioural approaches .......................................................................................................................82
Classification .........................................................................................................................................................................83
Coping theory ....................................................................................................................................................................... 86
Strategies included in chronic pain management programmes .................................................. 90
Limitations in knowledge of coping ..................................................................................................................... 91
Moving towards models of ability and resilience in pain ................................................................... 93
Justifying a theory of how people positively manage chronic pain .................................................. 99
Summary ...................................................................................................................................................................................... 102
Chapter Three - Why use grounded theory? .......................................................................................................... 103
Why develop a theory? ................................................................................................................................................ 103
What is a theory? ............................................................................................................................................................. 105
How are theories developed? ................................................................................................................................ 108
The research purpose .................................................................................................................................................... 110
How this research question arose and how grounded theory may help answer it ........ 110
Grounded theory and variants ....................................................................................................................................... 113
Introduction to grounded theory ........................................................................................................................... 113
Ontology and epistemology ..................................................................................................................................... 115
Grounded theory variants.......................................................................................................................................... 120
Grounded Theory and Symbolic Interactionism ....................................................................................... 122
Dealing with pre-existing knowledge, and extant literature............................................................ 124
Grounded theory and theory building..................................................................................................................... 126
Meeting quality criteria for grounded theory studies .................................................................................. 131
Summary ................................................................................................................................................................................. 138
Chapter Four – Developing a classical grounded theory ............................................................................... 139
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Living well with chronic pain: A classical grounded theory
Initiating research using grounded theory .......................................................................................................... 141
Data selection and collection ....................................................................................................................................... 148
What is good grounded theory data? .............................................................................................................. 150
Participants and recruitment ................................................................................................................................... 155
Data management ........................................................................................................................................................... 158
Data analysis ............................................................................................................................................................................. 162
Developing a theory of living well with chronic pain ................................................................................... 167
Summary ..................................................................................................................................................................................... 202
Chapter Five - A model of living well with chronic pain ................................................................................ 203
A mid-level substantive theory .................................................................................................................................. 204
The main concern and its resolution ..................................................................................................................... 205
Characteristics of the model ......................................................................................................................................... 210
Influence of time .............................................................................................................................................................. 210
Mutability and stability .................................................................................................................................................. 211
The processes of making sense ................................................................................................................................. 213
Deciding........................................................................................................................................................................................ 222
The processes of flexibly persisting .......................................................................................................................228
The model as a whole ................................................................................................................................................. 239
Contributions to knowledge ........................................................................................................................................ 240
Chapter Six - Integrating the literature ....................................................................................................................... 243
Coping and identity ............................................................................................................................................................ 244
Identity, self-concept and illness ........................................................................................................................ 246
Self-discrepancy theory applied to those with chronic pain ......................................................... 249
Coping with chronic illness and disease ....................................................................................................... 255
Learning to live with chronic pain ...................................................................................................................... 263
Resilience studies ............................................................................................................................................................ 271
Occupation and meaning ........................................................................................................................................ 280
To summarise ........................................................................................................................................................................... 291
Chapter Seven - Contributions, Limitations, Opportunities and Conclusions ............................ 294
Answering the research questions ......................................................................................................................... 295
Contributions to knowledge ........................................................................................................................................ 296
Limitations of this study ................................................................................................................................................. 304
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Living well with chronic pain: A classical grounded theory
Opportunities for further research .......................................................................................................................... 308
Concluding remarks .............................................................................................................................................................. 311
References ......................................................................................................................................................................................... 314
Appendix 1: Ethics ..................................................................................................................................................................... 368
Amendments and Protocol Deviations ..................................................................................................................... 369
Appendix 2: Semi-structured interview ..................................................................................................................... 376
Indicative Questions ........................................................................................................................................................... 376
Appendix 3: Participants ........................................................................................................................................................ 378

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Living well with chronic pain: A classical grounded theory
List of Figures
Figure 1. Biopsychosocial model (Engel, 1977). University of Rochester Medical Education. .9
Figure 2. Multi-faceted model of components of pain, Loeser (1982).................................................... 55
Figure 3. The "fear"-avoidance model developed by Vlaeyen and Linton (2000). ..................... 60
Figure 4. Grounded theory process (Egan, 2002) .............................................................................................. 140
Figure 5. Example of NVivo analysis tool ................................................................................................................... 161
Figure 6. Excerpt from memo showing four codes (1) attitude to pain; (2) personal
attributes; (3) it's a process, and (4) health professional did more ....................................................... 169
Figure 7. Memo showing early thoughts about categories ....................................................................... 170
Figure 8. Memo showing coding integration ............................................................................................................171
Figure 9. Memo recording properties associated with the category "getting on with it" ..... 172
Figure 10. Memo diagram illustrating relationships between three categories ........................... 175
Figure 11. Memo illustrating properties of the category "getting on with life". ............................... 176
Figure 12. Diagram drawn while attempting to fit categories into the "Six C's" basic
psychological process. ............................................................................................................................................................. 179
Figure 13. Diagram illustrating "tipping point", then relabelled "Turning Point" and finally
called “deciding” ........................................................................................................................................................................... 180
Figure 14. Clarifying the relationships between categories, and raising the question of new
pain........................................................................................................................................................................................................... 181
Figure 15. Incidents coded to "doing what's important", later relabelled "Important
Occupations" ................................................................................................................................................................................... 185
Figure 16. (Overleaf)Memos considering category "doing what's important" as it evolved
into "Important occupations"(a) “Doing what’s important” memo (b) Table 2.1 from
Molineux (2009) (c) Occupations and doing what’s important ............................................................... 187
Figure 17. Indicators for category "Clinician who does more", later relabelled "Trustworthy
clinician". ............................................................................................................................................................................................. 195
Figure 18. Memo illustrating relationship between category "Trustworthy clinician" and
when participants decided to “get on with life”. .................................................................................................. 196
Figure 19. Memo discussing Leventhal's model and my findings ......................................................... 199
Figure 20. Illustration of relationships between data and conceptual analysis ........................ 204
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