Living and Doing with Chronic Pain

377 Pages·2011·3.26 MB·English

Living and Doing with Chronic
Pain: Clients’ and Occupational
Therapists’ Perspectives

Helen van Huet
BAppSci(OT), AccOT

A thesis submitted
for the degree of Doctor of Philosophy

Faculty of Health Sciences
The University of Sydney, Australia
February 2011

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Table of Contents

List of Tables ........................................................................................ vi
List of Figures ........................................................................................ vi
Abstract ....................................................................................... viii
Acknowledgements .................................................................................... x
The Mystery of Pain ................................................................................... xi

CHAPTER 1: INTRODUCTION .............................................................. 1
1.1 Introduction .................................................................................... 1
1.2 Background/rationale For Topic Selection ..................................... 1
1.3 Purpose ......................................................................................... 3
1.4 Relevance of the Research ........................................................... 3
1.5 Scope ............................................................................................ 5
1.6 Assumptions and Meanings .......................................................... 6
1.7 Structure of Thesis and Overview ................................................. 8
1.8 Locating the Study Within the Existing Body of Knowledge......... 10
CHAPTER 2: LITERATURE REVIEW .................................................. 11
2.1 Purpose of the Literature Review ................................................ 11
2.2 Literature Review Process........................................................... 11
2.3 Chronic Pain ................................................................................ 12
2.3.1 Definition ...................................................................................... 12
2.3.2 Prevalence ................................................................................... 13
2.3.3 Pathophysiology ........................................................................... 13
2.3.4 Treatment Models and Methods ................................................... 14
2.3.5 Emerging Treatment Methods ...................................................... 18
2.3.6 Occupational Therapy Views of Practice Using Psychological
Methods ....................................................................................... 21
2.3.7 Philosophical Stance of Occupational Therapy: Relevance to the
Study ............................................................................................ 21
2.3.8 Client/Person-Centred Practice .................................................... 22
2.3.9 Occupational Therapy Approaches to Pain Management ............. 23
2.4 Ways of Explicating Life Meaning and Experience ...................... 28
2.4.1 Time and Narrative: A Ricoeurian Perspective ............................. 28
2.4.2 Meaning and Experience of Chronic Pain Reflected in Illness
Narratives. .................................................................................... 31
2.5 Identity, Self and Role ................................................................. 39
2.5.1 Historical View of Self/identity ....................................................... 39
2.5.2 Psychology of Self ........................................................................ 40
2.5.3 Identity, Self-knowledge and Self-esteem ..................................... 42
2.5.4 Role .............................................................................................. 44
2.6 Occupational Terms .................................................................... 47
2.6.1 Occupation ................................................................................... 47
2.7 Occupations of Meaning and Adaptation ..................................... 50
2.7.1 Occupations of Meaning ............................................................... 50
2.7.2 Occupational Adaptation............................................................... 52
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2.8 Summary: A Conceptual Framework for the Study ..................... 53
CHAPTER 3: METHODOLOGY ........................................................... 56
3.1 Introduction .................................................................................. 56
3.2 Purpose of the Research ............................................................. 56
3.3 Research Questions .................................................................... 57
3.4 Research Approach ..................................................................... 57
3.4.1 Qualitative Research Paradigm .................................................... 59
3.4.2 Narrative Ways of Knowing .......................................................... 60
3.4.3 Illness Narratives .......................................................................... 62
3.4.4 Justification for Use of the Method ................................................ 62
3.5 Study Design ............................................................................... 63
3.5.1 Stages 1 and 2 ............................................................................. 63
3.5.2 Study Settings .............................................................................. 64
3.5.3 Study Sequence and Rationale .................................................... 65
3.6 Research Processes ................................................................... 66
3.6.1 Ethical Approval ........................................................................... 66
3.6.2 Recruitment .................................................................................. 66
3.6.3 Consent/Revocation of Consent and Ensuring Confidentiality ...... 68
3.6.4 Sampling ...................................................................................... 69
3.6.5 Method of Collecting Data ............................................................ 71
3.7 Data Collection ............................................................................ 73
3.7.1 Data Collection Stage 1 ................................................................ 73
3.7.2 Research Questions Stage 1 ........................................................ 74
3.7.3 Data Collection Stage 2 ................................................................ 77
3.7.4 Research Questions: Stage 2 ....................................................... 78
3.7.5 Transcription: Stages 1 and 2 ....................................................... 79
3.7.6 Rigour ........................................................................................... 80
3.7.7 Member Checking ........................................................................ 81
3.7.8 Saturation ..................................................................................... 81
3.7.9 Triangulation ................................................................................. 82
3.7.10 Reflective Journal ......................................................................... 83
3.8 Data Analysis .............................................................................. 83
3.8.1 Sequencing the Events ................................................................. 83
3.8.2 Discovering the Themes ............................................................... 84
3.8.3 Interpreting the Stories ................................................................. 84
3.8.4 Reflexivity ..................................................................................... 87
3.9 About the Researcher ................................................................. 88
3.10 Summary ..................................................................................... 90
CHAPTER 4: FINDINGS – INTRODUCING THE PARTICIPANTS ...... 92
4.1 Introduction .................................................................................. 92
4.2 Introducing Stage 1 PMP Participants ......................................... 93
4.2.1 Sarah............................................................................................ 93
4.2.2 Maree ........................................................................................... 95
4.2.3 Will ............................................................................................... 96
4.2.4 Alexandra ..................................................................................... 98
4.2.5 Dawn .......................................................................................... 100
4.2.6 Stacey ........................................................................................ 101
4.2.7 Julia ............................................................................................ 103
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4.2.8 Rachel ........................................................................................ 105
4.2.9 Willie........................................................................................... 107
4.2.10 Margaret ..................................................................................... 109
4.2.11 Alice ........................................................................................... 111
4.2.12 Bill .............................................................................................. 113
4.2.13 Rosie .......................................................................................... 115
4.2.14 Ian .............................................................................................. 117
4.2.15 Sara ........................................................................................... 119
4.3 Introducing Stage 2 Therapist-Participants................................ 122
4.3.1 Patricia (elite therapist-participant) ............................................. 122
4.3.2 Kristine ....................................................................................... 123
4.3.3 Leah ........................................................................................... 124
4.3.4 Liz .............................................................................................. 126
4.3.5 Marie .......................................................................................... 127
4.3.6 Alison ......................................................................................... 129
4.3.7 Elizabeth (elite therapist-participant) ........................................... 129
4.3.8 Louise ......................................................................................... 131
4.3.9 Matt ............................................................................................ 132
4.4 Summary ................................................................................... 134
CHAPTER 5: FINDINGS – PMP PARTICIPANTS’ PERSPECTIVES 135
5.1 Introduction ................................................................................ 135
5.2 Stage 1 PMP Participant Findings ............................................. 136
5.2.1 “Self” themes .............................................................................. 139
5.2.2 Meaning ascription themes ......................................................... 149
5.2.3 Themes of strategies to manage pain ......................................... 156
5.2.4 Social World Themes ................................................................. 176
5.3 Summary ................................................................................... 206
CHAPTER 6: FINDINGS – THERAPIST-PARTICIPANT ................... 207
PERSPECTIVES .................................................................................... 207
6.1 Introduction ................................................................................ 207
6.2 Stage 2: Therapist-Participant Findings (client-related themes) 208
6.2.1. Person/Self Themes ................................................................... 212
6.2.2. Meaning Ascriptions ................................................................... 220
6.2.3. Strategies ................................................................................... 227
6.2.4. External/Social World ................................................................. 246
6.3 Summary ................................................................................... 262
CHAPTER 7: DISCUSSION AND IMPLICATIONS FOR .................... 263
THEORY AND PRACTICE ..................................................................... 263
7.1 Introduction .............................................................................. 263
7.2 Synthesis of the Findings .......................................................... 264
7.2.1 Introduction................................................................................. 264
7.2.2 Self/person ................................................................................. 264
7.2.3 Conclusions from Section 1 – Self/person .................................. 270
7.2.4 Meaning Ascriptions ................................................................... 271
7.2.5 Conclusion for Section 2 – Meaning Ascriptions ......................... 275
7.2.6 Strategies ................................................................................... 276
7.2.7 Conclusion for Section 3 – Strategies ......................................... 290
7.2.8 Social World ............................................................................... 291
7.2.9 Conclusion for Section 4 – Social World ..................................... 308
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7.3 Synopsis .................................................................................... 308
7.4 Conceptual Models of Agentic and Victimic Factors Influencing
Chronic Pain ............................................................................. 309
7.4.1 Introduction................................................................................. 309
7.4.2 Background to the Conceptual Models ....................................... 310
7.5 Implication of Findings for Theory ............................................. 314
7.6 Implication of Findings for Education and Practice .................... 318
7.7 Conclusion ................................................................................. 324
CHAPTER 8: CONCLUSION – REFLECTIONS AND ........................ 325
RECOMMENDATIONS .......................................................................... 325
8.1 Introduction ................................................................................ 325
8.2 Impact/Importance ..................................................................... 325
8.3 Recommendations for Occupational Therapy and Chronic Pain
Practice ...................................................................................... 327
8.4 Research issues encountered ................................................... 328
8.5 Reflections on the Research Process ....................................... 332
8.6 Implications for Further Research (Recommendations) ............ 334
8.7 Closing message ....................................................................... 334
REFERENCES ..................................................................................... 335

Appendix A: Information letter and consent form for Stage 1
participants .............................................................................. 352
Appendix B: Information letter and consent form for Stage 2
participants .............................................................................. 355
Appendix C: Ethics approvals ........................................................... 358
Appendix D: Sample questions for Stage 1 participants ................... 363
Appendix E: Examples of Reflexive Journal entries ......................... 364

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List of Tables
Table 3.1: Questions that Arose from the Conceptual Framework of the
Literature Review .................................................................... 58
Table 3.2: Study Sequence and Timelines ...............................................66
Table 3.3: Demographics of Stage 1 Participants at time of PMP
attendance ...............................................................................70
Table 3.4: Demographics of Stage 2 Therapist-participants at time of
interview…................................................................................71
Table 3.5: Therapist-participant questions that arose from the conceptual
framework of the literature........................................................79
Table 5.1: "Self" Themes of PMP Participants.........................................136
Table 5.2: Meaning Ascriptions of PMP Participants ..............................136
Table 5.3: Strategies of PMP Participants ..............................................137
Table 5.4: Social World Influences..........................................................138
Table 6.1: Person/Self Themes About Clients from Therapist-participant
Perspectives............................................................................208
Table 6.2: Meaning Ascriptions About Clients from Therapist-participant
Perspectives............................................................................209
Table 6.3: Strategies Clients Used from Therapist-participant
Perspectives........................................................................... 210
Table 6.4: Social World Influences on Clients Pain Management from
Therapist-participant Perspectives..........................................211

List of Figures
Figure 1.1: Where the research is situated in the existing body of
knowledge…………...................................................................10
Figure 2.1: Conceptual framework related to research questions that
informed and guided the design and conduct of the study........54
Figure 3.1: Schematic diagram of relationship between developmental
theme categories……………………..........................................85

Figure 4.1: Sarah's narrative slope ............................................................94
Figure 4.2: Maree's narrative slope ..........................................................96
Figure 4.3: Will's narrative slope ................................................................98
Figure 4.4: Alexandra's narrative slope.....................................................100
Figure 4.5: Dawn's narrative slope ...........................................................101
Figure 4.6: Stacey's narrative slope .........................................................103
Figure 4.7: Julia's narrative slope .............................................................105
Figure 4.8: Rachel's narrative slope .........................................................107
Figure 4.9: Willie's narrative slope ............................................................109
Figure 4.10: Margaret's narrative slope ....................................................111
Figure 4.11: Alice's narrative slope ...........................................................113
Figure 4.12: Bill's narrative slope...............................................................115
Figure 4.13 Rosie's narrative slope ...........................................................117
Figure 4.14: Ian's narrative slope ..............................................................119
Figure 4.15: Sara's narrative slope ...........................................................121

Figure 7.1: Agentic Conceptual Model.......................................................313
Figure 7.2: Victimic Conceptual Model.......................................................314

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STATEMENT OF AUTHORSHIP

I, Helen van Huet, declare this thesis titled “Living and doing with chronic
pain: Clients’ and occupational therapists’ perspectives” is my own original
work and has not been submitted in whole or in part for a higher degree at
any other University or institution. To the best of my knowledge it does not
contain any materials previously published or written by another person
except where due reference is made in the text.

Ms. Helen van Huet

STUDENT DECLARATION

I certify that this thesis titled “Living and doing with chronic pain: Clients’
and occupational therapists’ perspectives” will be available to the public
after examination

Ms. Helen van Huet

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Abstract

The purpose of this research was to investigate how people with chronic
pain manage their pain in the long term and what factors influence that
management. The perspectives of past participants of a chronic pain
management program (PMP) and occupational therapists working with
people with chronic pain were sought to see if there was compatibility or
difference in their points of view.

The overarching research questions that arose from a review of the
literature were:
• What factors predict successful pain management in the long term?
• How do people live and do with chronic pain in their everyday lives?
These questions formed the foundation for further detailed exploration of
how social factors, personal beliefs and meanings, individual attributes
and strategies influenced pain management.

The study design was based on qualitative methods, in this instance
narrative inquiry, to gain stories from PMP participants of living with pain
and therapist-participants of working in pain practice. Narrative inquiry was
selected as it allowed participants to tell their stories of living and working
with chronic pain. Stories inherently contain aspects of the past, present
and future. This was an important element to capture in relation to the time
contingent process of chronic pain management (Charmaz, 1991).

Fifteen PMP participants were recruited in Stage 1 of the research, both
males and females, with ages ranging from 31 to 64 years. Nine therapist-
participants were recruited in Stage 2, who worked across a range of
chronic pain settings including private practice, community-based and
hospital-based pain programs. Data were gathered through semi-
structured interviews predominantly conducted at PMP participants’
homes and therapist-participants’ places of work. Interviews were tape-
recorded and transcribed verbatim, with all participants receiving a
summary of interviews for comment.

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Data analysis used an iterative and interpretive approach. Transcripts
were read as whole stories, with initial researcher impressions noted and
recorded. Transcripts were then subjected to closer scrutiny, with key
themes, words and phrases noted using the participants’ language. These
detailed themes were sorted into common groupings and compared
across participants. Idiosyncratic themes were not discarded. The main
themes that emerged related to the categories of self/identity, meaning
ascriptions about pain, strategies used, and the influence of the social
world. Within each of these categories, factors became apparent that
influenced whether a person was predominantly agentic, active in their
pain self-management, or victimic and passive, relying on external support
(Polkinghorne, 1995).

A conceptual model is proposed based on (a) knowing (meanings
ascribed to chronic pain), (b) doing (strategies and methods used to
engage in everyday activities), and (c) being (aspects of the self
intrinsically and socially constructed) as critical to managing chronic pain.
These factors are significant when considering how people live with
chronic pain within the community in the long term and also how and when
health care services specific to chronic pain might best be utilised to
achieve favourable outcomes.

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Acknowledgements
The creation of the thesis is a journey that involves many different people
at different stages of the voyage, from the initial tentative research
question to the final editing and submission. Colleagues have compared a
thesis to giving birth, acknowledging that the pregnancy is difficult and
error fraught. However with nurturing guidance and supervision a
rewarding end point is reached.
I would like to acknowledge the supervisors who have guided me on this
journey in order of their involvement:
• Associate Professor Ev Innes, who has supported me all the way,
who has remained constant and managed to give her limited time
so generously when her work demands are huge.
• Professor Gail Whiteford, who came on board as methodological
expert and guided my theory generation during the time of her
involvement.
• Dr. Ruth Beltran, who graciously took over my supervision and
continued to supervise and contribute even after her retirement
from university.
• Associate Professor Roger Stancliffe, who guided me home, being
charged with getting the thesis in shape for final submission and
coming on board willingly so late in the process.
I sought professional editorial assistance for consistent formatting,
grammar and spelling, however this was not related to content.
The support I have received from family particularly my partner Craig, has
meant that I have been able to progress albeit unevenly towards my goal.
My children, Dan, Kat and Luka, have often wondered “why the hell Mum
has to write so much and spend so much time doing work” while the house
falls into disarray! The process has been difficult especially when working
part-time and bringing up three children, however the personal and
professional benefits have been worth it. I have learnt to think more
critically, reflect at a deeper level and approach research as an opportunity
rather than a chore. I believe the thesis is ready to launch into the
occupational therapy profession and look forward to publishing more
findings from the thesis to hopefully inform theory and practice.
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