A Narrative Inquiry into the Experiences of Aboriginal People Living with HIV and Previous ...

328 Pages·2015·1.83 MB·English

A Narrative Inquiry into the Experiences of Aboriginal People Living with
HIV and Previous Incarceration
by
Anthony Villano de Padua

A thesis submitted in partial fulfillment of the requirements for the degree of
Doctor of Philosophy

Faculty of Nursing
University of Alberta

© Anthony Villano de Padua, 2015
ii

Abstract
HIV and AIDS are diseases that are increasingly diagnosed in incarcerated and
previously incarcerated Aboriginal persons with little academic inquiry having been done in this
field. In this study, I engaged four previously incarcerated Aboriginal men and women in order to
understand their experiences of living with HIV and AIDS through personal, human, cultural,
and healing domains of being. The four participants resided in Saskatchewan, Canada at the time
of the study.
I utilized a form of narrative inquiry (Clandinin, 2014; Clandinin & Connelly, 2000) as a
relational methodology to guide the research. Through the use of narrative inquiry, I co-
constructed multiple stories about HIV and AIDS and determined factors that contributed to the
strength and resiliency of my participants. I engaged in 5-6 audio-taped conversations with each
participant, lasting between 1-2 hours per conversation. Through a process of moving back and
forth through field, interim, and research texts, a synthesis of the 4 participants’ life stories is
presented.
The dissertation is divided into 8 chapters. The first chapter provides a recount of my first
exposure to HIV, Aboriginal people, and reasons why I have chosen to engage in this research.
My second chapter is a review of the literature. The third chapter provides a discussion on the
use of narrative inquiry as a methodology and a discussion on the relevant issues that arose with
this methodology. The fourth, fifth, and sixth chapters are my findings chapters. In these
findings chapters, I share my four participants’ stories as well as present beginning narrative
threads at the end of each chapter.
iii

In the seventh chapter, narrative threads from the findings chapters are pulled together in
three common overarching narrative threads. The three threads are traumatization, stigma, and
transformation. In the eighth chapter I provide four important key insights from my analytical
interpretations. These insights are: 1) that health care providers and participants come from
different worlds; 2) children are motivators for the participants to improve their life situations; 3)
institutions and historical use of power have contributed to the powerlessness that participants
have experienced; 4) culture and healing are linked together. Finally, I provide recommendations
for nursing practice, corrections, education, and research.
iv

Preface
This thesis is an original work by Anthony Villano de Padua. The research project, of which this
thesis is a part, received ethical approval from the University of Alberta Research Ethics Board,
Project Name: “A Narrative Inquiry into the Experiences of Aboriginal People Living with HIV
and Previous Incarceration,” No. Pro00023810, October 25, 2011. No part of this thesis has been
previously published.
v

Acknowledgements

As I look back on my PhD journey, I have a long list of people to thank. First, I need to
thank my four research participants. Lauren, Mary, Winston, and Janelle, you have all deeply
touched my life. You have graciously and freely shared your stories. I know that your
experiences will transform others who have their minds and hearts open to hearing the lessons
and truths that lie within your stories. You are examples of strength, resilience, and hope in this
world, and I wish you and your children much happiness.
I could not have completed this academic and personal journey without the team that
guided my thoughts and pushed me to see the world in different ways. To my committee
members, Dr. Jana Grekul and Mr. Willie Ermine, I thank you for the expertise you have brought
to my dissertation. Willie, you almost made me quit before I had even begun as you posed
difficult ethical and cultural questions for me to consider before embarking on my research.
Jana, I appreciate your expertise in the correctional system and the class you taught me about
Aboriginal issues and corrections. However, what I appreciate most is your ability to challenge
me regarding the place of theory within corrections and institutions.
Of course, I need to thank both of my patient and wonderful supervisors, Dr. Sylvia
Barton and Dr. Judy Mill. Your mentorship and friendship is something I will never forget. You
have been with me since the beginning and have seen me struggle and fall. Thank you for
picking me up and supporting me through many difficult times. Some say having two
supervisors can be very difficult and that is absolutely true. However, the knowledge that I
gained from both of you has made me a much richer academic and individual. Sylvia, thank you
for your expert hand as I negotiated the world of narrative inquiry. The work you have done
vi

continues to inspire me. Judy, thank you for continuing as my supervisor even after you retired
from the university. I appreciate how you have freely shared your expertise in HIV, encouraged
and helped me receive a CIHR doctoral award, published and presented with you, and introduced
me to others that I know will help me develop my academic career. Thank you for also opening
up your home to me.
I also thank Dr. Vera Caine. You brought your expertise in the fields of HIV and
narrative inquiry into my revisions making my work stronger. In addition, I greatly appreciate
your kindness, patience, and generosity as you have so willingly worked with me. For all this I
thank you, and I look forward to working with you in the future.
Finally, I need to acknowledge my family and friends. My friends at First Nations
University of Canada and at the University of Alberta have always been there to encourage me,
and I am grateful for that. To my parents and other family members, your prayers and continued
good thoughts have helped me finish this dissertation. To my wife, Larissa, and my children,
Alexander, Greyson, and Liana, I am grateful for your enduring and unconditional love.
Completing this dissertation is as much for all of you as it is for me.
vii

Table of Contents
Chapter One: Introduction ............................................................................................................... 1
My First Encounter with HIV ......................................................................................................... 2
My Focus on Aboriginal People ...................................................................................................... 2
Aboriginal Teachings ...................................................................................................................... 6
Increasing HIV Rates among Aboriginal Peoples ........................................................................... 8
Choosing Narrative Inquiry ............................................................................................................. 9
Chapter Two: Reviewing the Literature ........................................................................................ 13
Aboriginal HIV Trends and Risk Factors for Disease .................................................................. 13
A Focus on Aboriginal Research and HIV .................................................................................... 20
The Correctional System, Aboriginality, and HIV ....................................................................... 23
Literature Summary and Discussion ............................................................................................. 30
Chapter Three: Relational Methods through Narrative Inquiry .................................................... 34
Theoretical Considerations ............................................................................................................ 37
In the midst. ........................................................................................................................... 37
Relational responsibilities. ..................................................................................................... 38
Narrative beginnings. ............................................................................................................. 39
Practical, Field Text-Oriented Considerations .............................................................................. 42
Negotiating relationships. ...................................................................................................... 42
Negotiating entry to the field. ................................................................................................ 44
Commitment to understanding lives in motion. ..................................................................... 47
Moving from field to field texts. ............................................................................................ 51
Moving from field texts to interim and final research texts. ................................................. 53
Interpretive-Analytic Considerations ............................................................................................ 54
Representing narratives of experience in ways that show temporality, sociality, and place. 55
Rigor .............................................................................................................................................. 58
Justifications—personal, practical, social. ............................................................................. 59
Ethical Issues ................................................................................................................................. 60
Attentive to multiple audiences. ............................................................................................ 61
Relational response communities. ......................................................................................... 62
Concluding Remarks ..................................................................................................................... 65
Chapter Four: Belonging in the World: Discovering a Dynamic Identity .................................... 66
Childhood Stories of Lost Innocence ............................................................................................ 66
The “invisible guy.” ............................................................................................................... 68
“Because of this foster home, my spirit left me as a child.” .................................................. 69
“We got starved: Our foster mother wouldn’t feed us for days . . .” ..................................... 72
Bedtime routine: “I would just go numb.” ............................................................................. 73
“I had that mentality of survival.” ......................................................................................... 74
A family tree: “I had a place with my family.” ..................................................................... 74
Surviving Self Harm, Violence, and HIV ..................................................................................... 77
“My chemical romance.” ....................................................................................................... 77
viii

“Fighting with giants.” ........................................................................................................... 79
“Power struggles.” ................................................................................................................. 80
“My decision to change my life.” .......................................................................................... 82
My Parents: Searching, Learning, and Letting Go ........................................................................ 84
“Taking drugs: I just wanted my dad’s acceptance.” ............................................................. 84
My Mother and Father’s Death ..................................................................................................... 86
Narratives of HIV .......................................................................................................................... 90
HIV diagnosis: “HIV was my punishment.” ......................................................................... 90
Attitudes to HIV ............................................................................................................................ 92
Life on the Outside ........................................................................................................................ 94
“I believe strongly in karma: They’ll get what’s coming to them.” ...................................... 95
Relationships with Health Care Workers ...................................................................................... 98
Post-Traumatic Stress .................................................................................................................. 100
A Healing Journey ....................................................................................................................... 102
Hate and healing. ................................................................................................................. 102
Being a mother. .................................................................................................................... 103
Native spirituality and Christianity. ..................................................................................... 104
Setting boundaries: “It is important to separate your old life with the life you want.” ....... 105
Late for Christmas. .............................................................................................................. 108
Correctional Experiences ............................................................................................................ 109
Health services on the inside. .............................................................................................. 109
Connecting with Aboriginal traditions. ............................................................................... 111
Becoming “institutionalized.” .............................................................................................. 114
Harm reduction. ................................................................................................................... 115
Taking charge of my life: “My turning point.” .................................................................... 117
Case management in federal corrections. ............................................................................ 119
Getting control of anger: “My triggers, my downfalls, and my good qualities.” ................ 120
Reflective Beginnings on Narrative Threads .............................................................................. 125
Stigma. ................................................................................................................................. 125
Incarcerated experiences. ..................................................................................................... 127
Cultural identity. .................................................................................................................. 130
Trauma. ................................................................................................................................ 131
Family. ................................................................................................................................. 133
Healing. ................................................................................................................................ 135
Chapter Five: Narratives of HIV, Street Life, Drugs, and Incarceration .................................... 137
Negotiating Street Life, Drugs, and Incarceration ...................................................................... 137
Getting to know Mary. ......................................................................................................... 137
Being open with my HIV status. .......................................................................................... 138
It takes two people to have sex. ........................................................................................... 139
Coming from a family of drug addicts. ................................................................................ 141
Not feeling scared anymore. ................................................................................................ 142
Seeing the demons. .............................................................................................................. 144
Reflecting on Mary’s tattoo. ................................................................................................ 145
ix

Living in the women’s provincial facility. ........................................................................... 147
Living with HIV .......................................................................................................................... 148
Finding out I was HIV positive............................................................................................ 148
The meaning of HIV in Mary’s life. .................................................................................... 149
Searching for Something in Relationships .................................................................................. 151
I miss and love my children. ................................................................................................ 151
Having a good partner in a good community. ..................................................................... 153
Reflective Beginnings on Narrative Threads .............................................................................. 156
Community. ......................................................................................................................... 156
Harm reduction. ................................................................................................................... 158
Traumatisation. .................................................................................................................... 161
Chapter Six: Two Paths Crossing: Winston and Janelle ............................................................. 164
Winston’s Past ............................................................................................................................. 164
A life of violence. ................................................................................................................ 165
Bikers and drugs. ................................................................................................................. 167
HIV Stories .................................................................................................................................. 169
Receiving my HIV diagnosis. .............................................................................................. 169
Taking medications. ............................................................................................................. 170
Being judged. ....................................................................................................................... 171
Experiences with Health Care in Corrections ............................................................................. 173
The doctor broke the rules. .................................................................................................. 173
Institutional life. ................................................................................................................... 174
Straightening out. ................................................................................................................. 176
Financial challenges. ............................................................................................................ 177
Challenges of finding employment. ..................................................................................... 178
Housing problems. ............................................................................................................... 179
Moving forward. .................................................................................................................. 179
Janelle’s Stories ........................................................................................................................... 182
Janelle’s Past ............................................................................................................................... 182
Abuse behind closed doors. ................................................................................................. 183
Becoming a mother. ............................................................................................................. 185
Drugs and prostitution. ........................................................................................................ 187
Experiences with HIV ................................................................................................................. 191
Contracting HIV. ................................................................................................................. 191
HIV stigma. .......................................................................................................................... 192
How am I going to tell my family? ...................................................................................... 193
The Struggles of Moving Forward .............................................................................................. 194
Breaking trust: Experiences with counselling. .................................................................... 194
Getting into a routine. .......................................................................................................... 195
Drugs are all around us. ....................................................................................................... 197
Finding my strength and support. ........................................................................................ 201
Reflective Beginnings on Narrative Threads .............................................................................. 203
Living an addicted life. ........................................................................................................ 203
x

Living with HIV. .................................................................................................................. 205
Transformation of self. ........................................................................................................ 209
Loss and grief. ...................................................................................................................... 211
Chapter Seven: Overarching Analytical Interpretations ............................................................. 213
Traumatization ............................................................................................................................ 213
Intergenerational trauma. ..................................................................................................... 213
Street life trauma. ................................................................................................................. 217
Trauma as a result of living an addicted life. ....................................................................... 219
The trauma of living with HIV. ........................................................................................... 220
Incarceration trauma. ........................................................................................................... 222
Trauma as a result of loss and grief. .................................................................................... 224
Relevance of trauma. ........................................................................................................... 225
Stigma .......................................................................................................................................... 228
HIV stigma. .......................................................................................................................... 228
Addiction stigma. ................................................................................................................. 232
Incarceration stigma. ............................................................................................................ 235
Relevance of stigma. ............................................................................................................ 236
Transformation ............................................................................................................................ 238
Cultural identity. .................................................................................................................. 239
Family. ................................................................................................................................. 243
Healing. ................................................................................................................................ 244
Community. ......................................................................................................................... 248
Limiting the harm. ............................................................................................................... 250
Chapter Eight: Key Insights and Recommendations................................................................... 253
Key Insights ................................................................................................................................. 253
From different worlds. ......................................................................................................... 253
Children as motivators. ........................................................................................................ 260
Power and powerlessness. .................................................................................................... 262
Healing and culture. ............................................................................................................. 267
Considering the Past and Thoughts on the Future ....................................................................... 273
Recommendations for nursing practice. .............................................................................. 275
Recommendation for corrections. ........................................................................................ 278
Recommendations for education. ........................................................................................ 280
Recommendations for research. ........................................................................................... 281
Conclusion ................................................................................................................................... 282
Appendix A: Participant and Researcher Agreement ................................................................. 313
Appendix B: Referral Groups ..................................................................................................... 314
Appendix C: Consent Form ......................................................................................................... 315
Appendix D: Research Information Sheet .................................................................................. 317