Arthritis, Aches and Pains, and Arthritis Services

230 Pages·2011·1.18 MB·English

by  Annette Browne

Arthritis, Aches and Pains, and Arthritis Services:
Experiences from within an Urban First Nations Community
by
Heather L. McDonald
B.S.N. University of British Columbia, 1987
M.Sc. University of Toronto, 1992

A thesis submitted in partial fulfillment of the requirements for the degree of
Doctor of Philosophy
in
The Faculty of Graduate Studies
(Nursing)
The University of British Columbia
(Vancouver)
July 2011
© Heather L. McDonald, 2011
ii

ABSTRACT
This dissertation explored the experiences of health and healthcare reported by members
of an urban First Nations community who had arthritis and the ways in which arthritis health
services were aligned (or not aligned) with these experiences. Using a community-based,
participatory design, grounded in decolonizing methodologies and ethnographic methods, this
study had two research fields that related to the research questions. Study activities in one
research field included intensive immersion in a First Nations community over a period of three
years, and interviews with 24 community members. In the second field, which included three
arthritis services settings, study activities involved approximately 100 hours of immersion and
interviews with 30 healthcare professionals. The analysis of community-based data revealed that
experiences of ongoing arthritis/pain and social suffering were inextricably linked to and
underpinned by the social and historical context of life in the community. Most, but not all,
community participants were reluctant users of health services, largely related to prior negative
experiences utilizing health services. The organization and delivery of arthritis health services,
shaped by dominant healthcare discourses, were not well aligned with the experiences of First
Nations peoples with arthritis; rationing and biomedical discourses limited the ability of the
system to be responsive to social contexts, and culturalist and self-management discourses
served to deflect healthcare professionals’ attention away from the role that social and material
life conditions played in shaping the experiences of First Nations individuals living with arthritis.
Amongst arthritis health services leaders and professionals there was a sincere desire to provide
effective, quality care to all people with arthritis. Creating more opportunities for social/critical
knowledge to be present in health services settings could go a long way towards improving the
alignment of arthritis services with arthritis experiences of First Nations peoples.
iii

PREFACE
Ethics approval for this study was received from the University of British Columbia, Behavioural
Research Ethics Board. This study was originally approved in June, 2006; the last annual
renewal was received in October, 2010 (H06-03901-A006).
Permission to interview healthcare professionals was granted through the Vancouver Health
Authority Research Institute, Approval number V07-0168 (2007-2009).
iv

TABLE OF CONTENTS
ABSTRACT .............................................................................................................................................................. ii
PREFACE ............................................................................................................................................................... iii
TABLE OF CONTENTS ............................................................................................................................................. iv
LIST OF TABLES .................................................................................................................................................... vii
LIST OF ACRONYMS ............................................................................................................................................ viii
ACKNOWLEDGEMENTS .......................................................................................................................................... x
CHAPTER ONE: INTRODUCTION ............................................................................................................................. 1
BACKGROUND TO THE STUDY ............................................................................................................................................ 1
The Social and Historical Context of Aboriginal Peoples’ Health and Healthcare ................................................. 4
The Historical and Current Context of Research Involving Aboriginal Peoples ..................................................... 8
CENTRAL PROBLEM ........................................................................................................................................................ 9
PURPOSE ...................................................................................................................................................................... 9
THE RESEARCH QUESTIONS ............................................................................................................................................ 10
ORGANIZATION OF THE THESIS ........................................................................................................................................ 11
CHAPTER TWO: REVIEW OF THE LITERATURE ...................................................................................................... 14
THE SOCIAL AND HISTORICAL CONTEXT OF ABORIGINAL PEOPLES’ HEALTH .............................................................................. 15
CHRONIC ILLNESS AND THE BURDEN OF ARTHRITIS IN ABORIGINAL POPULATIONS ..................................................................... 17
Understanding the Burden of Arthritis in Aboriginal Populations ...................................................................... 19
Biomedical Perspectives of Arthritis in Aboriginal Populations .......................................................................... 21
ARTHRITIS HEALTH SERVICES AND THE CANADIAN HEALTH SYSTEM ........................................................................................ 22
Chronic Illness (Self) Management...................................................................................................................... 25
Arthritis Services: Changing in Which Direction? ................................................................................................ 29
The Conundrum of Chronic Pain Management ................................................................................................... 31
ABORIGINAL PEOPLES’ ENCOUNTERS WITH THE HEALTH SYSTEM ........................................................................................... 35
Culturalist Discourses and Racializing Practices in Healthcare ........................................................................... 36
Improving Healthcare for Aboriginal Peoples? ................................................................................................... 41
Conceptualizations of culture in healthcare. .................................................................................................................... 41
Cultural safety. ................................................................................................................................................................. 43
SUMMARY OF, AND GAPS IN, THE STATE OF KNOWLEDGE .................................................................................................... 45
CHAPTER THREE: THEORETICAL PERSPECTIVES, METHODOLOGY, AND METHODS ............................................... 47
BACKGROUND FOR THE RESEARCH ................................................................................................................................... 47
THEORETICAL PERSPECTIVES ........................................................................................................................................... 48
METHODOLOGICAL APPROACH ....................................................................................................................................... 52
RESEARCH DESIGN ........................................................................................................................................................ 52
PRACTICES AND PROTOCOLS THAT SHAPED THE DESIGN ....................................................................................................... 53
RESEARCH ACTIVITIES IN THE COMMUNITY FIELD ................................................................................................................ 55
Community Setting.............................................................................................................................................. 56
Gaining Community Access ................................................................................................................................. 57
Participatory Processes in the Community .......................................................................................................... 58
Data Collection in the Community ...................................................................................................................... 60
v

Fieldnotes from immersion experiences. ......................................................................................................................... 63
RESEARCH ACTIVITIES IN THE ARTHRITIS SERVICES FIELD ...................................................................................................... 64
Gaining Access .................................................................................................................................................... 65
Data Collection .................................................................................................................................................... 65
Healthcare provider participants. .................................................................................................................................... 67
DATA ANALYSIS ........................................................................................................................................................... 68
Interview Data .................................................................................................................................................... 69
Analyzing Fieldnotes ........................................................................................................................................... 71
ESTABLISHING RIGOR IN THE RESEARCH PROCESS ............................................................................................................... 71
The Nature of Research Relationships: Reflexivity and Positionality .................................................................. 72
Reflexivity about Processes of Interpretation ..................................................................................................... 73
Trustworthiness of the Findings .......................................................................................................................... 74
KNOWLEDGE TRANSLATION ACTIVITIES ............................................................................................................................. 75
ETHICAL CONSIDERATIONS ............................................................................................................................................. 76
LIMITATIONS ............................................................................................................................................................... 78
SUMMARY .................................................................................................................................................................. 78
CHAPTER FOUR: PREAMBLE TO THE THREE FINDINGS CHAPTERS ........................................................................ 80
CHAPTER FIVE: “WHY DO I HAVE SO MUCH PAIN?” ............................................................................................. 84
FOR EVERY ACHE THERE IS A STORY ................................................................................................................................. 84
A CHILDHOOD FILLED WITH (GROWING?) PAIN ................................................................................................................. 88
THE WEAR AND TEAR OF A HARD LIFE .............................................................................................................................. 91
ACHES AND PAINS AND THE CONTEXT OF SOCIAL SUFFERING ................................................................................................ 96
Financial Stress.................................................................................................................................................... 97
“Nothing to Brag About, Being Abused” ............................................................................................................. 98
“I Got Pain in Me”: Grief and Loss ..................................................................................................................... 102
SUMMARY ................................................................................................................................................................ 106
CHAPTER SIX: “I’VE JUST LEARNED HOW TO DEAL WITH IT.” ............................................................................. 108
SUFFERING IN SILENCE ................................................................................................................................................. 109
“If You Don’t Have Pain, I Guess You’re Just Not Living” .................................................................................. 109
“Nobody Wants to Hear Me Suffer”.................................................................................................................. 112
RESOURCES FOR LIVING WELL WITH ACHES AND PAINS...................................................................................................... 116
The Role of Family ............................................................................................................................................. 116
The Role of Traditional Medicines ..................................................................................................................... 119
The Role of the Health System in Living Well with Aches and Pains ................................................................. 120
Subjugation of the physical. ........................................................................................................................................... 120
“It’s like, to me…she doesn’t care.”................................................................................................................................ 122
Negative experiences in the health system. ................................................................................................................... 124
“There isn’t anything we can really do.” ........................................................................................................................ 125
“I can talk to her…”......................................................................................................................................................... 128
SUMMARY ................................................................................................................................................................ 130
CHAPTER SEVEN: ARTHRITIS HEALTH SERVICES ................................................................................................. 131
PROVIDING SERVICES TO ABORIGINAL PATIENTS: ARTHRITIS PROVIDERS’ PERCEPTIONS ........................................................... 131
Addressing Complex Social Circumstances in the Midst of Rationing and Biomedical Discourses ................... 132
vi

Constructing Patients as “Passive”: Culturalism and Self-management Discourses ......................................... 134
Dealing with Non-Insured Health Benefits ........................................................................................................ 138
THE STRUCTURE OF ARTHRITIS SERVICES ......................................................................................................................... 141
The Arthritis Services Hierarchy ........................................................................................................................ 142
Problems diagnosing rheumatoid arthritis in Aboriginal populations. ........................................................................... 142
Positioning osteoarthritis as appropriate for primary care. ........................................................................................... 143
Marginalizing people with fibromyalgia. ........................................................................................................................ 144
Prioritizing Services: Specialist and Cost-effective Services .............................................................................. 145
Attempts to Address Arthritis Healthcare Needs in First Nations Populations ................................................. 148
SUMMARY ................................................................................................................................................................ 153
CHAPTER EIGHT: OVERVIEW, IMPLICATIONS, RECOMMENDATIONS, AND CONCLUDING THOUGHTS ................ 155
OVERVIEW OF THE STUDY AND SUMMARY OF THE FINDINGS ............................................................................................... 155
Relevance of the Study ...................................................................................................................................... 155
Methodology, Design, and Methods ................................................................................................................. 156
Overview of Major Findings .............................................................................................................................. 157
Situating arthritis experiences within a social and historical context. ........................................................................... 157
Living with arthritis: Experiences within the community and with health services. ...................................................... 159
A lack of alignment: The organization and delivery of arthritis health services and the experiences of First Nations
peoples with arthritis. .................................................................................................................................................... 162
IMPLICATIONS ............................................................................................................................................................ 166
Implications for Federal Policy Regarding First Nations Peoples with Arthritis ................................................ 167
Implications for Provincial Policy Regarding Chronic Illness Management ...................................................... 170
Ethical questions arising from the focus on self-management. ..................................................................................... 171
Case management as a policy initiative to improve chronic illness management. ........................................................ 172
Incorporating the Concept of Total Pain into Arthritis Care Services ................................................................ 173
Transformations in Arthritis Services Organization and Delivery ..................................................................... 176
Drawing on ideas from cultural safety in the delivery of arthritis services. ................................................................... 177
Restructuring arthritis services to include services for complex osteoarthritis (OA). .................................................... 179
Critically questioning the link between arthritis research and arthritis clinical services. ............................................... 180
Two-eyed Seeing as a Metaphor for Partnership Methodologies in Arthritis Research ................................... 181
RECOMMENDATIONS ARISING FROM THIS STUDY .............................................................................................................. 182
Policy ................................................................................................................................................................. 182
Health Services .................................................................................................................................................. 183
Community Services .......................................................................................................................................... 184
Research ............................................................................................................................................................ 184
Education .......................................................................................................................................................... 185
CONCLUDING COMMENTS: THE LESSON OF TWO-EYED SEEING ........................................................................................... 185
REFERENCES ....................................................................................................................................................... 187
APPENDICES....................................................................................................................................................... 207
APPENDIX A: LETTER OF AGREEMENT BETWEEN THE FIRST NATIONS COMMUNITY AND THE STUDENT ........................................ 207
APPENDIX B: INTERVIEW GUIDE .................................................................................................................................... 210
APPENDIX C: CONSENT FORMS ..................................................................................................................................... 211
APPENDIX D: KNOWLEDGE TRANSLATION HANDOUT FOR COMMUNITY PARTICIPANTS ............................................................ 218
vii

LIST OF TABLES

Table 1: Number of First Nations Participants by Gender and Age Range…………………….62
Table 2: Number and Type of Healthcare Professionals Interviewed….………………………67
viii

LIST OF ACRONYMS

AE Aboriginal epistemology
AFN Assembly of First Nations
ASMP Arthritis self-management program
CAC Community advisory committee
CBPR Community-based participatory research
CCM Chronic care model
CDSMP Chronic diseases self-management program
CHSRF Canadian Health Services Research Foundation
CHSPR Centre for Health Services Policy Research
CIHR Canadian Institutes of Health Research
CRA Community-based research assistant
DMARDS Disease-modifying anti-rheumatic drugs
FM Fibromyalgia
FNC First Nations Centre
FNIH First Nations and Inuit Health
HCP Healthcare professional
IPV Intimate partner violence
KT Knowledge translation
NIHB Non-insured health benefits
OA Osteoarthritis
OASIS OsteoArthritis Services Integration System
OCAP Ownership, control, access, possession
OT Occupational therapist
ix

PCF Post-colonial feminism
PHO Provincial Health Officer
PT Physiotherapist
RA Rheumatoid arthritis
RHS National Regional Longitudinal Health Survey
USA United States of America
VCH Vancouver Coastal Health
WHO World Health Organization
x

ACKNOWLEDGEMENTS
It takes a village to raise a dissertation (and an academic). This dissertation was formed
because of the work of many people. Their contribution made this dissertation what it is.
I received doctoral research awards from the Canadian Institutes of Health Research
(CIHR), the Michael Smith Foundation for Health Research, the Advanced Practice Nursing
Chair (McMaster University) and the University of British Columbia. This research was funded
by the CIHR operating grant MOP-84500, The organization and utilization of arthritis health
services for First Nations peoples living in the Southern Mainland Area of British Columbia,
Nominated Principal Investigator, Annette Browne, Graduate Student, Heather McDonald.
The foundation for this work was provided by my family. My nuclear family, including
my sons Liam and Rowen and my husband Rocky, provided endless amounts of comfort and
support. In addition, my three sisters and mother, and their husbands, extended encouragement
on countless occasions. I will be forever grateful for the knowing smiles, warm hugs, and
practical support (thanks Patty and Glenn for your editorial support!) that I received from my
family (and also friends) along the way.
My most profound thanks go out to the community members who engaged with me for
this research. In particular, my community partner enabled the research. Without her there would
be nothing to write. In addition, the members of the Community Advisory Committee had a
critical role. They were a force to be reckoned with and I feel so fortunate to have had them on
my side. Further, the community research assistants each contributed something unique and
valuable to the research. The mark left by them on this work and on myself reflects a gift for
which I will be eternally grateful. Finally, the men and women who shared their stories represent
the bricks and mortar of this dissertation; their generosity will be long remembered.