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The phone is my lifeline : impact of the Cedar Project WelTel mHealth program for HIV treatment and prevention… Jongbloed, Kate 2020

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    THE PHONE IS MY LIFELINE: IMPACT OF THE CEDAR PROJECT WELTEL MHEALTH PROGRAM FOR HIV TREATMENT AND PREVENTION AMONG YOUNG INDIGENOUS PEOPLE WHO HAVE USED DRUGS  by  Kate Jongbloed MSc, University of British Columbia, 2012 HBA, University of Toronto, 2008   A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF  DOCTOR OF PHILOSOPHY in THE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES  (Population and Public Health) THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver)  April 2020  © Kate Jongbloed, 2020     ii The following individuals certify that they have read, and recommend to the Faculty of Graduate and Postdoctoral Studies for acceptance, the dissertation entitled:  The Phone is My Lifeline: Impact of The Cedar Project WelTel mHealth Program for HIV Treatment and Prevention Among Young Indigenous People Who Have Used Drugs  submitted by Kate Jongbloed  in partial fulfillment of the requirements for the degree of Doctor of Philosophy in Population and Public Health  Examining Committee: Dr. Patricia M. Spittal, Professor, School of Population & Public Health, UBC Co-supervisor Dr. Martin T. Schechter, Professor, School of Population & Public Health, UBC Co-supervisor  Dr. Richard T. Lester, Associate Professor, Division of Infectious Diseases, UBC Supervisory Committee Member Dr. Mieke W. Koehoorn, Professor, School of Population & Public Health, UBC University Examiner Dr. Leanne Currie, Associate Professor, School of Nursing, UBC University Examiner      iii Abstract  Indigenous scholars have called for responses to substance use and HIV among young Indigenous people that acknowledge ongoing colonization, structural violence, and the impacts of intergenerational traumas, while building on cultural strengths and resilience. This mixed method dissertation took place within The Cedar Project cohort involving young Indigenous people who have used drugs in Vancouver and Prince George, British Columbia (BC). The purpose was to examine experiences of engagement with the HIV cascade of care, and evaluate The Cedar Project WelTel mHealth program for HIV-related health and wellness, among young Indigenous people who have used drugs living in British Columbia, using both qualitative and quantitative approaches. Findings support understanding of how a wholistic perspective of health and wellbeing, as well as experiences of ongoing colonial violence including child apprehension, inform engagement with the HIV cascade of care among Indigenous peoples. Results add to mounting evidence that state-based apprehensions of Indigenous children are a negative determinant of health for Indigenous families. Findings further illustrated how mobile phones can be a tool to support family (re)connections, relationships with health and social services, and self-determination within young Indigenous people who have used drugs’ health and wellness journeys. Moreover, this dissertation demonstrates that a supportive two-way texting mHealth initiative integrated into existing wraparound care from trusted case managers is acceptable and valued by young Indigenous people who have used drugs. Study findings provide evidence that the Cedar Project WelTel mHealth program may be an effective approach to support engagement in HIV care for young Indigenous people who have used drugs, and should be considered for application in other program settings as well. Four overarching recommendations for policy makers and health providers were developed in collaboration with Cedar mentors, committee members, and investigators: (1) uphold a wholistic perspective to walk with young Indigenous people who have used drugs on their health and wellness journeys; (2) urgently address ongoing apprehensions of Indigenous children; (3) offer the Cedar Project WelTel mHealth model for HIV health and wellness; and (4) explore integrating mHealth with healing modalities for substance use and other aspects of wholistic health and wellness.      iv Lay Summary  The Cedar Project is a long-term study following over 700 young Indigenous people who have used drugs in BC to better understand their health related to HIV and hepatitis C. The first aim of this dissertation was to understand experiences of HIV care and treatment among Indigenous people, including Cedar participants living with HIV. The second was to determine if a mobile phone ‘mHealth’ program would be helpful for young Indigenous people who have used drugs living with or at-risk of HIV. We found that family disconnections resulting from colonization were detrimental to HIV health and wellbeing, but that Indigenous culture, resilience, and social support promoted engagement in HIV care. We showed that supportive culturally-safe mHealth, including ability to call and connect with family and circles of care, as well as weekly texting with a case manager, was feasible, valued, and effective among participants living with and at-risk of HIV.      v Preface  This statement is to confirm that the work presented in this dissertation was conceived, conducted, analyzed, and written by Kate Jongbloed (KJ). KJ designed the research program, established the research objectives, collected significant parts of the data, conducted all the data analyses, and wrote each chapter of this dissertation, all with the governance of the Cedar Project Partnership which provides oversight for Cedar Project’s research, ethical, and knowledge translation activities. Guidance was provided by two Indigenous mentors who are members of the Partnership (Ms. Sherri Pooyak and Mr. Lou Demerais), and the thesis committee (Dr. Patricia M. Spittal, Co-Supervisor; Dr. Martin T. Schechter, Co-Supervisor; and Dr. Richard T. Lester, Committee Member). The research protocol for the project presented in this dissertation was approved through by the UBC Providence Health Care Research Ethics Board, certificate # H15-01192.  Chapter 3. A version of this material has been published in AIDS & Behavior: Jongbloed K, Pooyak S, Sharma R, Mackie J, Pearce ME, Laliberte N, Demerais L, Lester RT, Schechter MT, Loppie C, Spittal PM, For the Cedar Project Partnership. Experiences of the HIV cascade of care among Indigenous peoples: A systematic review. AIDS & Behavior. 2019; 23(4):984–1003. I was the lead investigator, responsible for all major areas of concept formation, data collection, and analysis, as well as manuscript composition. SP, RS, JM, MEP, and NL were involved in assessing articles for inclusion, verifying data extraction, and providing feedback on the review protocol and manuscript. SP and LD provided mentorship and guidance at all stages in their role as Cedar Project Partners and Indigenous mentors. RTL, MTS, CL, and PMS provided feedback on the review protocol, interpretation and presentation of results, and manuscript. Figure 3.1, which I created, was also previously published in Jongbloed, K., Parmar, S., Kop, M. v. d., Spittal, P. M., & Lester, R. T. (2015). Recent Evidence for Emerging Digital Technologies to Support Global HIV Engagement in Care. Current HIV/AIDS Reports, 12(4), 451-461.   Chapter 5. A version of this material has been accepted by JMIR mHealth and uHealth: Jongbloed K, Pearce ME, Thomas V, Sharma R, Pooyak S, Demerais L, Lester RT, Schechter MT, Spittal PM, For the Cedar Project Partnership. The Cedar Project WelTel mHealth Study: Mobile phone use and acceptability of mHealth among young Indigenous people who have used drugs. JMIR mHealth and uHealth (In Press, MS ID: JMU16783). I was the lead investigator, responsible for all major areas of study design, data collection, analysis, and   vi manuscript composition. MEP, VT, RTL, MTS, and PMS supported development of study design and instruments, interpretation of results, and provided feedback on the manuscript. VT was involved in data collection. MEP was involved in the rapid qualitative analysis. RS provided feedback on the interpretation and presentation of findings, and the manuscript. SP and LD provided mentorship and guidance at all stages in their role as Cedar Project Partners and Indigenous mentors.     vii Table of Contents Abstract ..................................................................................................................................... iii Lay Summary ............................................................................................................................ iv Preface ....................................................................................................................................... v Table of Contents .................................................................................................................... vii List of Tables .......................................................................................................................... xiii List of Figures .......................................................................................................................... xv Glossary ................................................................................................................................. xvii Acknowledgements .............................................................................................................. xviii Dedication ............................................................................................................................... xix Chapter 1 Introduction & Literature Review ....................................................................... 1 1.1 Researcher location .................................................................................................... 1 1.1.1 Transformative paradigm ....................................................................................... 3 1.2 Conceptual framework & related literature .............................................................. 5 1.2.1 Indigenous perspectives of health and wellness ................................................... 6 1.2.2 Colonization and legislated genocide of Indigenous peoples in Canada ............... 9 1.2.3 Ongoing impacts of colonization on health and wellbeing of Indigenous peoples 31 1.2.4 Indigenist stress-coping model ............................................................................ 40 1.2.5 Substance use and HIV vulnerability ................................................................... 46 1.2.6 Engagement in the HIV cascade of care ............................................................. 48 1.2.7 Responding to substance use and HIV among Indigenous peoples ................... 50 1.2.8 mHealth for HIV ................................................................................................... 55 1.3 Rationale, overview, and objectives ....................................................................... 56 Chapter 2 Methodology ....................................................................................................... 58 2.1 Overview of research approach .............................................................................. 58 2.1.1 The Cedar Project ................................................................................................ 60 2.2 Research relationships & ethical considerations .................................................. 61 2.2.1 Governance from the Cedar Project Partnership ................................................. 61 2.2.2 Cultural safety in the Cedar Project ..................................................................... 62 2.3 Methods ..................................................................................................................... 64   viii 2.3.1 Study setting ........................................................................................................ 64 2.3.2 Cedar Project Blanket Program ........................................................................... 65 2.3.3 Cedar Project WelTel mHealth Study .................................................................. 65 2.3.4 Sample ................................................................................................................. 68 2.3.5 Data sources ........................................................................................................ 70 2.3.6 Measures ............................................................................................................. 73 2.4 Overview of dissertation methods by chapter ....................................................... 76 2.5 Knowledge translation .............................................................................................. 77 Chapter 3 Results – Experiences of the HIV cascade of care among Indigenous peoples: a systematic review ................................................................................................. 79 3.1 Background ............................................................................................................... 79 3.2 Methods ..................................................................................................................... 80 3.2.1 HIV cascade of care framework ........................................................................... 80 3.2.2 Search strategy .................................................................................................... 81 3.2.3 Assessment for inclusion ..................................................................................... 81 3.2.4 Data extraction and synthesis .............................................................................. 82 3.2.5 Analytical approach ............................................................................................. 83 3.2.6 Quality assessment ............................................................................................. 83 3.3 Results ....................................................................................................................... 84 3.3.1 Overview of included articles ............................................................................... 85 3.3.2 Overarching determinants of engagement in the HIV care cascade ................... 87 3.3.3 Testing & diagnosis ............................................................................................. 91 3.3.4 Linkage to care .................................................................................................... 95 3.3.5 Retention in care .................................................................................................. 97 3.3.6 ART initiation........................................................................................................ 99 3.3.7 ART adherence .................................................................................................. 102 3.3.8 Viral suppression ............................................................................................... 104 3.3.9 Quality assessment ........................................................................................... 106 3.4 Discussion ............................................................................................................... 106 3.4.1 Limitations .......................................................................................................... 108 3.4.2 Conclusion ......................................................................................................... 108 Chapter 4 Results – Exploring intergenerational child apprehension and HIV among young Indigenous people who have used drugs ............................................................... 110   ix 4.1 Background ............................................................................................................. 110 4.1.1 Overview of research approach ......................................................................... 114 4.1.2 Rationale ............................................................................................................ 115 4.1.3 Theoretical framework ....................................................................................... 117 4.2 Qualitative phase .................................................................................................... 117 4.2.1 Qualitative methods ........................................................................................... 117 4.2.2 Qualitative findings ............................................................................................ 124 4.2.3 Summary ............................................................................................................ 134 4.3 Quantitative phase .................................................................................................. 134 4.3.1 Quantitative methods ......................................................................................... 134 4.3.2 Quantitative findings .......................................................................................... 136 4.4 Discussion ............................................................................................................... 138 4.4.1 Limitations .......................................................................................................... 141 4.4.2 Conclusion ......................................................................................................... 142 Chapter 5 Results – Mobile phone use and acceptability of mHealth among young Indigenous people who have used drugs in British Columbia, Canada .......................... 143 5.1 Background ............................................................................................................. 143 5.2 Methods ................................................................................................................... 144 5.2.1 Study design and setting ................................................................................... 144 5.2.2 Participants ........................................................................................................ 145 5.2.3 Data sources ...................................................................................................... 145 5.2.4 Analytical approach ........................................................................................... 146 5.3 Results ..................................................................................................................... 146 5.3.1 Baseline characteristics ..................................................................................... 146 5.3.2 Patterns of mobile phone use ............................................................................ 147 5.3.3 mHealth acceptance .......................................................................................... 148 5.3.4 Benefits of phone use for health ........................................................................ 149 5.3.5 Concerns using texting for health ...................................................................... 151 5.4 Discussion ............................................................................................................... 151 5.4.1 Limitations .......................................................................................................... 157 5.4.2 Conclusion ......................................................................................................... 158 Chapter 6 Results – Effect of mHealth for HIV viral suppression among young Indigenous people who have used drugs living with HIV ................................................. 159   x 6.1 Background ............................................................................................................. 159 6.2 Methods ................................................................................................................... 162 6.2.1 Study design ...................................................................................................... 162 6.2.2 Setting and sample ............................................................................................ 163 6.2.3 Data collection & measures ............................................................................... 164 6.2.4 Analysis .............................................................................................................. 165 6.2.5 Ethical considerations ........................................................................................ 166 6.3 Results ..................................................................................................................... 166 6.3.1 Baseline HIV cascade of care outcomes ........................................................... 166 6.3.2 Participant characteristics .................................................................................. 167 6.3.3 Effect of mHealth on viral suppression .............................................................. 169 6.4 Discussion ............................................................................................................... 170 6.4.1 Limitations .......................................................................................................... 173 6.4.2 Conclusion ......................................................................................................... 173 Chapter 7 Results – Effect of mHealth for HIV-related health and wellness among young Indigenous people who have used drugs ............................................................... 175 7.1 Background ............................................................................................................. 175 7.2 Methods ................................................................................................................... 178 7.2.1 Data sources ...................................................................................................... 179 7.2.2 Analytical approach ........................................................................................... 180 7.3 Results ..................................................................................................................... 180 7.3.1 Baseline characteristics ..................................................................................... 181 7.3.2 Effect of mHealth on health and wellness outcomes ......................................... 182 7.4 Discussion ............................................................................................................... 183 7.4.1 Limitations .......................................................................................................... 185 7.4.2 Conclusion ......................................................................................................... 186 Chapter 8 Results – Characterizing engagement in and perceptions of the Cedar Project WelTel mHealth Program ......................................................................................... 187 8.1 Background ............................................................................................................. 187 8.2 Methods ................................................................................................................... 189 8.2.1 Cedar Project WelTel mHealth program ............................................................ 189 8.2.2 Data collection ................................................................................................... 190 8.2.3 Measures ........................................................................................................... 191   xi 8.2.4 Analytical approach ........................................................................................... 192 8.3 Results ..................................................................................................................... 192 8.3.1 Baseline characteristics ..................................................................................... 192 8.3.2 Patterns of mHealth engagement ...................................................................... 194 8.3.3 Characteristics associated with mHealth engagement ...................................... 196 8.3.4 Mobile phone connectivity and use .................................................................... 197 8.3.5 Perceptions of the Cedar Project WelTel mHealth program .............................. 200 8.3.6 Problems, challenges, & dislikes ....................................................................... 201 8.4 Discussion ............................................................................................................... 202 8.4.1 Limitations .......................................................................................................... 206 8.4.2 Conclusion ......................................................................................................... 207 Chapter 9 Results – Exploring engagement with the Cedar Project WelTel mHealth program among young Indigenous people who have used drugs ................................... 208 9.1 Background ............................................................................................................. 208 9.1.1 Theoretical framework ....................................................................................... 210 9.2 Methods ................................................................................................................... 210 9.2.1 Research relationships ...................................................................................... 210 9.2.2 Setting and participants ..................................................................................... 211 9.2.3 Cedar Project WelTel mHealth program ............................................................ 211 9.2.4 Data collection ................................................................................................... 212 9.2.5 Analytical approach ........................................................................................... 213 9.3 Findings ................................................................................................................... 215 9.3.1 Theme 1: (Re)connect with family using study phones ..................................... 216 9.3.2 Theme 2: Reflected ongoing impacts of colonization and structural violence ... 219 9.3.3 Theme 3: Engaged with Cedar Case Managers ................................................ 226 9.4 Discussion ............................................................................................................... 240 9.4.1 Limitations .......................................................................................................... 241 9.4.2 Conclusion ......................................................................................................... 241 Chapter 10 Conclusion .................................................................................................... 243 10.1 Summary of study findings .................................................................................... 243 10.2 Strengths, contributions, & limitations ................................................................. 249 10.2.1 Strengths ........................................................................................................... 249 10.2.2 Methodological contributions ............................................................................. 251   xii 10.2.3 Policy & program contributions .......................................................................... 252 10.2.4 Limitations .......................................................................................................... 254 10.3 Recommendations .................................................................................................. 255 10.4 Conclusion ............................................................................................................... 262 Bibliography ........................................................................................................................... 264       xiii List of Tables  Table 2.1: Mixed methods – points of integration of qualitative and quantitative data .............. 60	Table 2.2: Study site characteristics .......................................................................................... 65	Table 2.3: Baseline characteristics of Cedar participants living with HIV (n=101), by enrolment in mHealth .......................................................................................................................... 69	Table 2.4: Baseline characteristics of HIV-negative Cedar participants invited vs. enrolled in mHealth (n=131) ................................................................................................................ 70	Table 2.5: Level of mHealth engagement ................................................................................. 76	Table 2.6: Overview of dissertation chapters ............................................................................ 77	Table 3.1: Search terms ............................................................................................................ 81	Table 3.2: Summary of characteristics of all included studies ................................................... 87	Table 4.1: Intergenerational child apprehension experiences (n=12) ..................................... 118	Table 4.2: Morse’s Taxonomy of Cognitive Operations .......................................................... 120	Table 4.3: Strategies used to enhance validity and rigour ...................................................... 123	Table 4.4: Baseline characteristics of young Indigenous participants living with HIV (n=52), by baseline viral suppression ................................................................................................ 137	Table 4.5: Longitudinal associations between intergenerational child apprehension experiences and viral suppression (GLMM) ......................................................................................... 138	Table 5.1: Baseline characteristics of young Indigenous people who have used drugs enrolled in the mHealth Program (n=131), by phone ownership .................................................... 147	Table 5.2: Baseline mobile phone patterns among young Indigenous people who have used drugs enrolled in The Cedar Project WelTel mHealth Study (n=130) .............................. 148	Table 5.3: Self-reported mHealth acceptance, by phone ownership and HIV status (n=130) . 149	Table 6.1: Baseline cascade of care outcomes among young Indigenous who have used drugs people living with HIV enrolled in mHealth (n=52) ........................................................... 167	Table 6.2: Baseline characteristics of young Indigenous people living with HIV who have used drugs enrolled in mHealth (n=52), by baseline viral suppression ..................................... 168	Table 6.3: Effect of the mHealth program period on HIV viral suppression (GLMM) .............. 169	Table 6.4: Effect of high vs. low mHealth engagement on viral suppression (GLMM) ............ 170	Table 7.1: Baseline characteristics of young Indigenous people who have used drugs enrolled in the Cedar Project WelTel mHealth Program (n=131), by completeness of data .......... 182	Table 7.2: Comparisons of outcomes in the mHealth period vs. the pre-program period ....... 183	Table 7.3: Effect of enrolment in mHealth program on resilience (GLMM) ............................. 183	  xiv Table 7.4: Effect of high vs. low mHealth engagement on resilience (GLMM) ........................ 183	Table 8.1: Baseline characteristics of young Indigenous people who have used drugs enrolled in the Program (n=131) .................................................................................................... 194	Table 8.2: Baseline characteristics associated with weekly level of mHealth engagement over the study period (GLMM) ................................................................................................. 197	Table 8.3: Phone connectivity and perceptions of mHealth at end of study (n=118) .............. 198	Table 8.4: Participant perceptions of greatest benefits of the mHealth program .................... 201	Table 9.1: Morse’s Taxonomy of Cognitive Operations .......................................................... 215	Table 9.2: Summary of themes related to engagement with the mHealth program ................ 216	Table 10.1: Summary of dissertation findings by chapter ....................................................... 247	    xv List of Figures  Figure 1.1: Examples of experiential learning during the dissertation research .......................... 5	Figure 1.2: Dissertation conceptual framework ........................................................................... 6	Figure 1.3: Timeline of over 140 years of state apprehension of Indigenous children .............. 20	Figure 1.4: HIV cascade of care among BC residents in 2011 (Nosyk et al., 2014) ................. 49	Figure 1.5: Baseline engagement in the HIV cascade of care among Indigenous people who use drugs in Vancouver (ACCESS Study, 2005-2014) ...................................................... 49	Figure 2.1: Examples of cultural safety in the research process ............................................... 64	Figure 2.2: Study timeline .......................................................................................................... 66	Figure 2.3: The Cedar Project WelTel mHealth program .......................................................... 66	Figure 2.4: Dissertation Sample ................................................................................................ 68	Figure 2.5: Data sources ........................................................................................................... 71	Figure 3.1: HIV cascade of care framework .............................................................................. 81	Figure 3.2: Tool developed and used to roughly assess whether research was conducted ‘in a good way’ according to common Indigenous research standards ..................................... 84	Figure 3.3: Selection of articles for systematic review of experiences of the HIV cascade of care among Indigenous peoples (PRISMA diagram) ................................................................. 85	Figure 3.4: Overview of available evidence of Indigenous peoples’ experiences along the HIV cascade of care .................................................................................................................. 86	Figure 3.5: Overarching determinants of engagement in the HIV care cascade identified in articles involving qualitative data (n=21) ............................................................................ 88	Figure 3.6: Studies reporting proportion of Indigenous people who had ever received testing (n=13) ................................................................................................................................. 94	Figure 3.7: Studies reporting proportion of Indigenous people on ART (n=8) ......................... 101	Figure 3.8: Studies reporting proportion of IPHAs whose viral load was suppressed (n=14) . 105	Figure 4.1: Overview of exploratory sequential mixed methods study design ........................ 116	Figure 6.1: Derivation of the study sample .............................................................................. 164	Figure 6.2: Baseline cascade of care outcomes among young Indigenous people living with HIV who have used drugs enrolled in the mHealth Program (n=52) ....................................... 167	Figure 8.1: Example of a weekly texting interaction (unit of analysis) ..................................... 190	Figure 8.2: Level of mHealth engagement .............................................................................. 191	Figure 8.3: Overview of texting patterns and engagement among 131 participants enrolled in mHealth (September 2014-January 2016) ....................................................................... 195	  xvi Figure 8.4: Levels of mHealth engagement over the study period .......................................... 196	Figure 8.5: Participant perspectives of impact of phone loss on health .................................. 198	Figure 8.6: Phone use over the study period .......................................................................... 199	Figure 8.7: Perceived benefits of the mHealth program at the end of the study ..................... 200	     xvii Glossary    ART Antiretroviral Therapy BC British Columbia Child apprehension Removal of children from their biological parents according to provincial and federal laws. Colonial violence and trauma Imposed state actions (including legislation and policies) that undermine Indigenous self-determination and contribute to mental, physical, emotional, and spiritual harm. Cultural safety & humility Culturally-safe services are those which respect and honour Indigenous identities and perspectives, and are free from racism and discrimination. They are characterized by respectful engagement that supports people seeking care to find paths to wellbeing. Reaching cultural safety requires an ongoing process of cultural humility. Healing-centered An approach to service delivery which recognizes and responds to the impact of colonial violence and trauma on health and wellness. HIV Human Immunodeficiency Virus HIV cascade of care Framework for understanding HIV treatment success. Steps along the cascade continuum include: diagnosis, linkage and retention in care, initiation and adherence to ART, and viral suppression. The term 'HIV care cascade' is also used here. Indigenous people  Descendants of the First Nations Peoples of North America; including Indigenous, Aboriginal, Métis, First Nations, and Inuit. Includes both Status and non-Status "Indians" under the Indian Act. IPHA Indigenous person living with HIV/AIDS MCFD BC Ministry of Children and Family Development mHealth Use of mobile devices, including phones, smartphones, and tablets, for health. OR Odds ratio. Also, unadjusted odds ratio (uOR) and adjusted odds ratio (aOR). Resilience Ability to cope despite adversity Strengths-based Research and programmatic approaches which focus on sources of strength and resilience that nurture health and wellbeing, as opposed to suppressing disease, sickness, or symptoms TRC Truth and Reconciliation Commission of Canada Viral suppression When the copies of HIV virus in the blood reach undetectable levels (≤ 40 copies/ml)   xviii Acknowledgements  I hold deep gratitude for the many people who generously and patiently taught me while I was busy with this dissertation. Most of all, thank you to the Cedar Project participants and partners – I will carry the lessons you taught me as long as I live.  Throughout this research I was a visitor, including living as an uninvited guest on unceded Coast Salish territories. I am a visitor in Indigenous spaces and drug use spaces. Thank you to the Cedar Project Partnership and all the Cedar participants for allowing me to spend time as a visitor, teaching me how to behave, and accommodating my accidental rudeness and many blunders. I am grateful for how you have showed me different ways to see and be in the world. To Sherri and Lou and Vicky and Earl and Kukpi7 Christian and Mary who have been kind hosts and thoughtful guides – you don’t know just how much you have taught me. And to my teachers at the FNHA, Janene, Joe, Katie, Qut-same, Te-ta’in, Syexwaliya, your willingness to help me learn has been both humbling and transformative.  Dr. Patricia Spittal – your vision, guidance, and advocacy over the past 10 years have been foundational not only to my growth as an epidemiologist and health researcher, but to my development as a human being. Thank you for being my auntie as well as my supervisor.  I want to acknowledge the patient and ever-present support of my committee, Drs. Patricia Spittal, Martin Schechter, and Richard Lester. To Drs. Margo Pearce and Mia van der Kop, your PhD work with the Cedar Project and WelTel showed me a path to walk in my own dissertation journey. Margo, without our symbiotic relationship, I would not have gotten this far. To the Cedar team – Vicky, Sharon, Amanda, Jill, Matt, Anton, and David – you have made this work possible through your invaluable contributions in the Cedar study offices, rooted in your commitment to Cedar participants and bringing their voices forward. Margo, David, Richa, April, Nancy and Jen, I owe you tremendous thanks for lending your insight and expertise. Thank you also to the Indigenous scholars and knowledge keepers whose teachings and work I relied upon to begin to see health and wellbeing in a new way.  Thank you also to Katie, Asad, Zahra, Arisa, Greg, Claire, Shona, Robyn, Faith, Jay, and Surita, for being on my team and holding me up throughout this process. I am especially grateful to those who opened their homes to me and offered space for quiet, uninterrupted work – Diane, Dama, Robyn, Greg & Claire.  Most of all, being involved in this research has helped learn more about my own identity and sense of family. That on its own has made it worth it. Mum, Dad, and Ingo, I’m overwhelmed with gratitude for your unwavering support. Being family to someone in academic life must be trying in many ways, but you always handle it with grace and patience. Thank you a thousand times over.       xix Dedication  For my family – Mum, Dad and Ingo.   1 Chapter 1 Introduction & Literature Review  Young Indigenous1 people who have used drugs face significant barriers to health and wellbeing as a result of historical and lifetime traumas stemming from ongoing colonization and structural violence, especially related to substance use and HIV. Indigenous leaders and scholars have called for responses to substance use and HIV that acknowledge the ongoing impacts of intergenerational traumas while building on Indigenous perspectives, identities, and cultural strengths (Assembly of First Nations & Health Canada, 2015; Assembly of First Nations, National Native Addictions Partnership Foundation, & Health Canada, 2010; Barlow & Reading, 2008; Christian & Spittal, 2008; Duran & Walters, 2004; FNHA, 2017b; FNHA, BC Ministry of Health, & Health Canada, 2013; McKenzie, Dell, & Fornssler, 2016; Myhra & Wieling, 2014; Pearce, Jongbloed, et al., 2015; Walters, Simoni, & Evans-Campbell, 2002; Walters & Simoni, 1999).  This mixed-method dissertation took place within The Cedar Project, a prospective cohort study involving young Indigenous people who have used drugs in Vancouver and Prince George, British Columbia (BC). The purpose was to examine experiences of engagement with the HIV cascade of care, and evaluate The Cedar Project WelTel mHealth program for HIV-related health and wellness, among young Indigenous people who have used drugs living in British Columbia. This introductory chapter locates me (the doctoral researcher), describes the conceptual framework underpinning the dissertation, reviews relevant literature, and provides an overview of the chapters that follow.  1.1 Researcher location My name is Kate Jongbloed. I am a white first-generation descendant of European immigrants and have been living as an uninvited guest on the traditional Coast Salish territories of the Xʷməθkʷəyə̓m (Musqueam), Səl ̓ilwətaɁɬ (Tsleil-Waututh), and Sḵwx ̱wú7mesh (Squamish)                                                 1 A note about terminology: For the purposes of this dissertation, ‘Indigenous’ refers to those who are descendants of the First Peoples of North America including Métis, Aboriginal, First Nations, and Inuit peoples. Included in this definition are those who both do and do not have ‘status’ as per the Indian Act. I acknowledge that Indigenous peoples in BC, Canada, and globally are diverse, made up of many nations and communities. Where possible, I have tried to honour the identities of Indigenous scholars, knowledge keepers, and Cedar Project participants by using specific terms. However, this is not always possible, especially where data are aggregated or the sample includes a diverse group of Indigenous people. In these cases, I use the term “Indigenous”. I use “Indigenous peoples” when referring to a group of populations and “Indigenous people” when referring to a group of individuals. When referring to individual Indigenous people living with HIV, I use the acronym IPHA. Finally, I have adhered to the terms used in external sources when they are quoted directly.   2 Nations for close to 10 years. Some of my life experiences mirror those of the Cedar Project participants whose voices are represented in this study, as we are similar in age, and many are daughters, wives, and friends like I am. In other ways, they do not. My identity as a non-Indigenous person with limited experience using illicit drugs are key ways our life experiences diverge. While I carry many unearned social privileges with me to this work, the focus of this dissertation centers specifically around Canadian structures of settler-colonialism that result in both unfair disadvantage (oppression) and unfair advantage (privilege) (Nixon, 2019). It is important to recognize that I am embedded as part of this system that creates health inequities, and that I unfairly benefit from it in many ways (Nixon, 2019).   As a non-Indigenous researcher, guidance and governance from the Cedar Project Partnership – an independent body of Indigenous Elders, leaders, scholars, and health and wellness experts – has been fundamental to remaining accountable to the participants in this study. In particular, I have received direct mentorship from two Cedar Project Partners, Ms. Sherri Pooyak (Cree) who is a Community Based Research Manager for the Aboriginal HIV & AIDS Community-Based Research Collaborative Centre (AHA Centre) and Mr. Lou Demerais (Cree and Métis) who has served as the founding Executive Director of Vancouver Native Health Society. Throughout this dissertation, I have tried to use “I” to refer to actions taken by me in my role as doctoral candidate, and “we” to refer to collective actions by The Cedar Project Partnership and investigators, though these are not always distinct.  Being involved with the Cedar Project and this piece of work has been a personal learning journey for me. As you will see, an important theme of this dissertation is family – disconnection, reconnection, identity, and foundations of wellness. I relate to some of these experiences in that I was adopted and in recent years have worked to connect with my own birth family or to “stitch the pieces of my quilt back together”. This process was supported by my adoptive parents, two immigrants who left their own families as young adults to seek a new life in a faraway country. My family’s experience was not rooted in colonial laws and policies that seek to dismantle families and Nations as the Indigenous participants in this study. Still, the lessons I learned from participation in ceremonies, hearing participants tell their stories, and witnessing Cedar staff and partners at work, have helped me immensely on my own journey. I am very, very grateful.    3 Engaging in a process of reflexivity has provided the opportunity to recognize and make explicit several values I bring to this research (LeCompte & Schensul, 2010, p. 65; Watt, 2007):  • Cedar Project participants and partners are the experts. I worked to maintain a “learner orientation” and be open to the lessons participants and partners had to teach me about their knowledge and experiences. I am grateful for participants who spent time sharing their cultural expertise with me including how to smudge, how to say words in Indigenous languages (e.g., correct pronunciation of Bah'lats, the Carrier word for what is known in English as Potlatch), how to make a dream catcher, as well as inviting me to eat traditional foods such as eulachon grease. • Striving for cultural safety and humility. Cultural safety refers to respectful engagement with Indigenous people which seeks to address power imbalances to create an environment free of racism and discrimination (First Nations Health Authority, n.d.; Papps & Ramsden, 1996). Cultural humility is a lifelong process of self-reflection where one’s own biases and privileges are continually interrogated, unpacked, and addressed (Barlow et al., 2008; First Nations Health Authority, n.d.). Key to cultural humility is acknowledging oneself as a learner when it comes to understanding another’s experience (First Nations Health Authority, n.d.). • Change is urgent. Cedar participants are profoundly impacted by ongoing colonization and the effects of colonial violence and trauma. Their strengths, smarts, and resilience allow them to navigate untenable terrain. However, we know that Cedar participants are dying at an alarming rate – 13 times Canadians their age (Jongbloed et al., 2017). Real lives are at stake and there is urgent need to end and address the harms caused by colonial legislation, unresolved colonial traumas, and culturally unsafe services.  1.1.1 Transformative paradigm It is also important to briefly make explicit the worldview (paradigm) I hold as a researcher, and the related philosophical assumptions that have shaped this dissertation. My academic training and life experiences have led me to identify strongly with a transformative paradigm, rooted in critical theory (LeCompte & Schensul, 2010, p. 62; Mertens, 2007, 2009). According to a transformative paradigm, reality is shaped by socially constructed power structures that result in discrimination and oppression, such as those related to race, gender, and economics (LeCompte & Schensul, 2010, p. 64; Mertens, 2007; Mertens, Bledsoe, Sullivan, & Wilson, 2010). Power, discrimination, and oppression perpetuate inequalities, while resilience and   4 resistance oppose them (Mertens, 2009, pp. 3, 10). As a result, transformative research focuses on inequities that result in asymmetric power relationships, as well as the strategies used to resist, challenge, and subvert these constraints (LeCompte & Schensul, 2010, p. 63). It is explicit in its action agenda for reform, rooted in social justice and human rights (Mertens et al., 2010). Further, it requires that research cannot be stripped of these contexts of structural inequities (LeCompte & Schensul, 2010). Transformative researchers acknowledge that power dynamics shape what is considered ‘knowledge’ and also whose ‘reality’ or ‘truth’ is privileged (LeCompte & Schensul, 2010, p. 63; Mertens, 2007; Mertens et al., 2010). Therefore it is the role of the researcher to help shift the balance of power by making visible and challenging oppressive structures (Mertens, 2007; 2009, p. 5). Transformative researchers use the tools of research to illuminate inequities and find ways to bring about change in inequitable distributions of power (LeCompte & Schensul, 2010, p. 63). Collaboration is imperative so as to not further marginalize participants as a result of the inquiry (Mertens et al., 2010). Methodologically, this requires that communities represented in the research must be involved at all stages of the research process, from identifying research priorities, generating the research question, planning the design and methods, and interpreting the results (LeCompte & Schensul, 2010, p. 65; Mertens, 2007; 2009, p. 3). Researchers must also maintain a self-reflective stance to examine their own biases, privileges, and power relationships in relation to the research context (LeCompte & Schensul, 2010, p. 64). Throughout, the voices of those reflected in the research are privileged and amplified (Mertens et al., 2010). In addition, the transformative paradigm challenges a deficit perspective that contributes to pathologizing groups of people and upholding harmful stereotypes (Mertens, 2009, p. 17).  A requirement of being rooted in the transformative paradigm is privileging the worldview(s) of the Indigenous people who participate in and govern the Cedar Project. This has required active and ongoing learning through working closely with my mentors, spending time with Cedar Project Partners, attending ceremonies and cultural events, as well as seeking out learnings from other Indigenous scholars and Knowledge Keepers. In the last few years of this dissertation, I also began to work with the First Nations Health Authority which has offered significant opportunities for learning that are also reflected here. Much of this experiential learning related to Indigenous understandings of health and wellness has taken place outside of classrooms, journals, and textbooks (Chansonneuve, 2005, p. 8). I have tried to capture some of these learning moments in Figure 1.1. However, many have been informal and are not easily captured.    5  Figure 1.1: Examples of experiential learning during the dissertation research   1.2 Conceptual framework & related literature Nêhiyaw (Cree) and Saulteaux scholar Margaret Kovach states, “Conceptual frameworks make visible the way we see the world” (Kovach, 2009, p. 41). They represent the ‘thinking’ behind the ‘doing’ (Kovach, 2009, p. 39; Maxwell, 2012, p. 39). This section details the theories that are foundational to this dissertation and how they come together to form an overall conceptual framework. It also provides a review of the literature related to each element that appears within the dissertation conceptual framework. The framework is informed by the transformative paradigm. Additional relevant details are provided in the chapters that follow. Visualizing the conceptual framework (Figure 1.2) has been an iterative process, which I returned to frequently over the course of my PhD journey. It has evolved and shifted as I engaged with experiential learning, study data, and academic literature.  Embedded in the dissertation conceptual framework is a commitment to acknowledging and emphasizing existing strengths of young Indigenous people who have used drugs, as well as their families and communities, while also recognizing the impact of ongoing systemic oppression on their health and wellness (Van Uchelen, Davidson, Quressette, Brasfield, & Demerais, 1997). Throughout this section, relevant Cedar Project findings are presented to   6 provide specific context. Key calls to action from the Truth and Reconciliation Commission of Canada (TRC) Report are highlighted (Truth & Reconcilliation Commission of Canada, 2015). Finally, ‘real life’ examples of the issues under discussion, such as those brought forward in the media and through the voices of Indigenous leaders, Elders, and scholars, have been explicitly incorporated. This is important to me as it demonstrates that these ideas and concepts operate in both the past and present to impact real live people, their wellbeing, and that of their families, communities, and Nations.  Figure 1.2: Dissertation conceptual framework   1.2.1 Indigenous perspectives of health and wellness Indigenous peoples in Canada have long histories of health and wellbeing, including traditional healing and wellness systems, which have supported individuals, families, communities, and nations for thousands of years. Despite the diversity of Indigenous peoples in BC, Canada, and globally, a common thread is a wholistic2 perspective of health and wellness that includes mental, physical, emotional, and spiritual dimensions of wellbeing (Brant Castellano, 2008, p. 384; 2015, p. 33; FNHA, n.d.; King, Smith, & Gracey, 2009; Kirmayer, Sehdev, & Isaac, 2009;                                                 2 This spelling is explicit as it implies “whole” instead of “hole” (deficit focused), as recommended by Mi’kmaq Elder Murdena Marshall (Marshall, Marshall, & Bartlett, 2015). As a result, it is used throughout this dissertation.   7 Loppie Reading & Wien, 2013; Waldram, Herring, & Young, 2006, p. 74). Wellness is conceptualized as balance and harmony between interconnected aspects of individual and collective wellbeing (Van Uchelen et al., 1997) or what Cree scholar Jeffrey Ansloos refers to as ‘wholistic relationality’ (Ansloos, 2017, p. 17). In this way, health and wellness extends beyond the individual to include all relations including family, community, and nation, as well as kinship connections to land, water, and other living things (Hovey, Delormier, & McComber, 2014; King et al., 2009; McCormick, 1997; Sinclair, Hart, & Bruyere, 2009). Making and maintaining good relationships is the foundation of a healthy sense of self and balanced wellbeing (Chansonneuve, 2005, p. 43). Fulfilling a reciprocal role as a helper or healer is another component of interconnectedness, belonging, and cultural identity, which contributes to resilience and wellbeing (Brant Castellano, 2008, p. 389; Evans-Campbell, 2008; Kirmayer et al., 2009; McCormick, 1997). This is closely tied to being able to fulfill ones relational, cultural, and spiritual roles and responsibilities, including to land, family, and all relations (Freeman, 2017; Ka'opua, 2001; Pooyak, 2009). The teaching that everyone has a gift to share and the spirit grows weak if their gift is not being offered has been shared with me many times as I worked to complete this dissertation (FNHA et al., 2013). Indigenous perspectives of health and wellness are rooted in Indigenous cultures and ways of life, including languages, traditional laws, ceremonies, and healing approaches (Dion Stout, 2015; Gracey & King, 2009; King et al., 2009). These perspectives are powerfully articulated in the words of these three BC First Nations Elders and leaders:   “First thing about wellness is to know who you are. Who you come from. Your history. Your ceremonies. Your language. Your community.” – Elder Larry Grant, Xʷməθkʷəyə̓m Nation (Grant, 2017)  “Health to us is actually the result of having a sense of belonging, of knowing who you are, of knowing who your relatives were, of knowing what your place is in community. It’s about social responsibility, it’s about a whole complex network of relationships. So, health is not the absence or presence of disease. It’s a way of relating…and of being.” – Gwen Philips, Ktunaxa Nation (First Nations Health Council, 2010).   “It’s our connection to the land that has been severed, and that’s why a lot of our health is not there. A lot of communities were removed and relocated as an example, and those are the communities that have the biggest issues with suicide, social issues, addictions, alcohol. Because they were taken away from where their ancestors lived for thousands of years. And so, I think the more that we understand that our connection is to the land and to the water, and that it is that connection that has kept us healthy – not only for ourselves to re-learn and revisit and reinvigorate that but for society as a whole to recognize it, that   8 we do have that connection to the land.” – Kukpi7 (Chief) Wunu’xtsin Wayne Christian, Splatsin te Secwepemc (First Nations Health Council, 2010).  Self-determination is fundamentally tied to Indigenous health and wellness (Ansloos, 2017, p. 16; Gallagher, 2016; King et al., 2009; Reading, 2015). Indigenous scholars Jeff Corntassel (Cherokee Nation) and Cheryl Bryce (Songhees Nation) describe Indigenous self-determination as, “unconditional freedom to live one’s relational, place-based existence, and practice healthy relationships” (Corntassel & Bryce, 2011). Athabascan scholar Dian Million emphasizes that the meaning of self-determination is defined by each nation themselves, citing an example from the north-west coast of BC: “Nuxalk sovereignty is an active responsibility that intertwines our history, language, families, and connection to the land through complex and strict laws as related through our smayustas, songs, dances, and potlatches” (Jacinda Mack quoted in Million, 2013, p. 142). Self-determination manifests at multiple levels, from the individual (e.g., respect for patient decision making), family and community (e.g., freedom to engage in ceremony and culture), all the way to the nation (e.g., traditional laws, self-government, control over services), and has implications for health and wellbeing each level (Browne & Fiske, 2001; Chandler & Lalonde, 1998; Chandler & Lalonde, 2009; Million, 2013, pp. 136-142).  Indigenous rights to self-determination are enshrined in Canadian and International Law. In 1763, the Royal Proclamation was signed by King George III at the end of the Seven Years War. In addition to setting out the terms of governance of French-held territories “acquired” by the English during the war, it recognized Indigenous peoples as self-governing entities and has formed the basis of treaty making since Canadian confederation in 1867 (Milloy, 1999, p. 12; Towtongie & Stevens, 2015, p. xvii). The Proclamation has been characterized as the “Indian Magna Carta” (Towtongie & Stevens, 2015, p. xvii). Over 200 years later in 1982, the Canadian Constitution was patriated from British Parliament to Canada’s federal and provincial legislatures. Pressure from BC First Nations leaders who led the Constitutional Express, traveling by train to Ottawa to address then Prime Minister Pierre Trudeau, ensured the new document included Indigenous peoples’ right to self-determination (Union of BC Indian Chiefs, 2005). As a result, Section 35 (1), which recognizes and affirms Indigenous peoples’ inherent right to self-govern, was included in the Constitution Act of 1982, and has formed the basis of important legal challenges in the last 35 years (Borrows, 2005; Waldram et al., 2006, p. 12). Internationally, the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) outlines Indigenous rights to self-determination and self-government (UN General Assembly, 2007). UNDRIP was adopted in 2007 by a majority in the UN General Assembly with 144   9 states voting for, and four votes against (Mitchell & Enns, 2014). Canada was one of four countries that voted against, along with Australia, New Zealand, and the United States (Mitchell & Enns, 2014). It was not until 2010 that Canada reversed its position and supported UNDRIP (Mitchell & Enns, 2014). In 2015, the TRC released its findings and called for UNDRIP to form the foundation of reconciliation in Canada (Sinclair, Littlechild, Wilson, & The Truth and Reconciliation Commission of Canada, 2015). Specifically, TRC Call to Action 43 recommends the full adoption and implementation of UNDRIP by all levels of government in Canada (Truth & Reconcilliation Commission of Canada, 2015). In 2016, Canada removed its official objector status, nearly a decade after UNDRIP’s adoption (Fontaine, 2016). Both the current federal and provincial governments have committed to renewing a nation-to-nation relationship with Indigenous peoples and upholding UNDRIP (BC NDP, 2018; Trudeau, 2018). In May 2018, Bill C-262, which provides a legislative framework to bring Canadian law into alignment with UNDRIP, was approved by the Canadian House of Commons (209 to 79 votes) and was read in the Senate; however it was not passed into law prior to the 2019 Federal Election (Parliament of Canada, 2019b). These are hard won and positive developments made possible through hundreds of years of resistance and advocacy by Indigenous leaders (Union of BC Indian Chiefs, 2005). However, in the next section I examine how colonial institutions have historically, and in the present, undermined Indigenous rights, freedoms, sovereignty, and nationhood, and the consequences for Indigenous health and wellbeing. As settler historian Mary-Ellen Kelm states, Indigenous “health problems have roots in the material conditions of wardship and therefore can be fixed once those conditions are removed” (Kelm, 1999, p. xvii).  1.2.2 Colonization and legislated genocide of Indigenous peoples in Canada  “In this part of the world we’ve had 150 years of colonial rule where everything from birth to death were ruled by government legislation.” – Kukpi7 (Chief) Wunu’xtsin Wayne Christian, Splatsin te Secwepemc (First Nations Health Council, 2010)  Indigenous health and wellbeing were forcibly disrupted through colonization by European settlers persisting to this day (Dion Stout, 2015; Kelm, 1999, p. xvii). Ongoing colonization and its intergenerational effects are considered fundamental and underlying determinants of Indigenous peoples’ health (Greenwood & de Leeuw, 2012; King et al., 2009; Loppie Reading & Wien, 2013; Reading, 2015; Smylie & Firestone, 2016). Colonization is rooted in racist ideology viewing Indigenous peoples as inferior to European settlers (Loppie, Reading, & de   10 Leeuw, 2014). The harmful aim of Canada’s assimilation policies was the deliberate destruction of family, social, and political systems that sustain Indigenous wellbeing (Christian, 2010; Million, 2013, p. 20; Richmond & Cook, 2016; Sinclair, 2007; TRC, 2015a).	Self-determination is undermined by the imposition of foreign laws that dispossess Indigenous peoples of their land, rights, and freedoms (Milloy, 1999, p. 9; Reading, 2015). In particular, there are five Canadian institutions I will highlight, which have historically, and continue to, oppress Indigenous peoples:   • Indian Act3 • Residential school system • Child apprehension system4 • Criminal justice system • Healthcare system  It is vital to note that with the exception of the residential school system, the laws and policies of these imposed systems persist. Canada’s current Prime Minister, Justin Trudeau, has acknowledged in a recent speech to the House of Commons that this legislation has resulted in “generations of harm” (Trudeau, 2018). The majority of these individual and collective harms have not been fully addressed. Yet, as we examine the health and wellness impacts of each of these institutions, it is important to remember that Indigenous peoples, Nations, and ways of being have survived and in many ways, continue to thrive.  Indian Act  “I think it’s critical that non-Indigenous Canadians be aware of how deeply the Indian Act penetrated, controlled, and continues to control, most aspects of the lives of First Nations. It is an instrument of oppression.” – Bob Joseph, Gwawaenuk Nation (Joseph, 2018)  The Indian Act lays out the Government of Canada’s policies of assimilation and appropriation of Indigenous lands, and positioned Indigenous people as legal wards of the Canadian state (Bennett, Blackstock, & De La Ronde, 2005; Richmond & Cook, 2016; Smylie, 2009, pp. 13-14). It was unilaterally imposed in 1876 and remains in effect. The Indian Act includes broad controls that undermine Indigenous rights and freedoms, including those related to governance,                                                 3 Indian Act (R.S.C., 1985, c. I-5) 4 Though the terms ‘child welfare’ and ‘child protection’ are common when referring to government infrastructure and legislation that seeks to respond to harms faced by children, they do not reflect the colonial dynamics of wide-spread apprehension of Indigenous children by the BC government discussed here. Therefore, the term ‘child apprehension system’ is used.   11 land, identity, spirituality, and family ties (Borrows, 2008; Joseph, 2018; Milloy, 1999, p. 21; RCAP, Erasmus, & Dussault, 1996b, p. 584; Union of BC Indian Chiefs, 2005). Million describes the Indian Act as a form of normative or regulatory violence which has controlled every aspect of Indigenous life in Canada for approaching 150 years (Million, 2013, p. 6). Anishinaabe legal scholar John Borrows, who is of the sixth generation of his family to be affected by the Indian Act, states it is “anti-family” as a result of inclusion of legislative provisions that sever future relationships, in contrast to recognizing and affirming life-giving family connections and kinship bonds (Borrows, 2008).  Under the Indian Act, Canada's reserve system carved up traditional territories and closely controlled where Indigenous people were allowed to live and travel (Adelson, 2005; Union of BC Indian Chiefs, 2005; Ware, 1975). Today, reserves persist as a visible reminder of race-based segregation of Indigenous peoples (Loppie et al., 2014). Additional policies created a ‘pass system’ which required written permission from the Indian Agent to travel outside of reserve lands, which was used to control Indigenous resistance and limit visits by parents to children in residential schools (Joseph, 2018, pp. 50-52). The Act imposed foreign governance systems (bands, elected chiefs, and councils) intended to undermine Indigenous sovereignty and traditional governance. In addition, important governance mechanisms and ceremonies such as the potlatch and sun dance were outlawed between 1885-1951 (Joseph, 2018; Union of BC Indian Chiefs, 2005, pp. 47-49). The Act defines who is and is not an ‘Indian’. Previous versions included enfranchisement policies which encouraged assimilation by withholding rights from those who did not give up their ‘Indian’ status (Loppie et al., 2014). Sexism in the Indian Act is apparent as women were not allowed to vote in band elections until 1951 and those who married non-Indigenous husbands (and their children) were disenfranchised until 1985 and denied membership in their own communities (Joseph, 2018, pp. 19-23; Million, 2013, p. 59). The 1985 amendment (Bill 31-C) did not fully address the sex discrimination; while women’s status was reinstated, their band membership was not (Million, 2013, p. 130). Further, the grandchildren of these women are denied status (‘second generation cutoff’) while the grandchildren of their brothers are not (Joseph, 2018, pp. 21-22). Finally, particularly relevant for this dissertation, previously the Act also directly controlled access to healthcare, as Indigenous people were required to get the permission of the Indian Agent before visiting a physician or hospital, and prior to any medical procedure (Kelm, 1999, p. 111).    12 Resistance. Since contact, Indigenous peoples have resisted the dispossession of their lands, imposition of colonial laws, and restrictions on culture under the Indian Act (TRC, 2015a, p. 116; Union of BC Indian Chiefs, 2005; Wesley-Esquimaux & Smolewski, 2004). A powerful illustration is the way BC First Nations leaders have engaged directly with settler governments to uphold their rights in the context of the unanswered land question since 1763 (Ignace & Ignace, 2017; Union of BC Indian Chiefs, 2005). For example in 1906 and 1908, BC First Nations chiefs travelled to London and Ottawa, speaking to King Edward VII and Prime Minister Wilfrid Laurier to contest the dispossession of their lands (Ignace & Ignace, 2017, pp. 462-463; Union of BC Indian Chiefs, 2005). This legacy of resisting attempts by settlers to undermine Indigenous land rights in this province has continued into the present day. As soon as the Indian Act ban which prevented Indigenous people from retaining legal counsel was lifted in 1951, Indigenous people began to use the courts to fight for and protect their inherent rights (Joseph, 2018, pp. 73-74; Union of BC Indian Chiefs, 2005; Union of BC Indian Chiefs & Tsilhqot’in National Government).  Some of the most discriminatory policies of the Indian Act have been redressed; however, Canada’s Federal Government, currently led by Prime Minister Justin Trudeau, continues to implement and administer this colonial legislation. Health consequences of the Indian Act are complex and far reaching (Richmond & Cook, 2016). On one hand, the Indian Act has restricted access to traditional approaches to health and wellness, including land, family, cultural traditions, and spirituality, which have sustained Indigenous peoples for thousands of years. On the other, the Indian Act has imposed foreign systems that have actively caused physical, mental, emotional, and spiritual harm, both directly (morbidity and mortality) and indirectly (contributing to negative determinants of health).  Related Cedar Project findings – connection to reserves: Measuring the complex impacts of Indian Act legislation on individual health and wellness is difficult. In the context of Cedar, one way to understand its impact is through participants’ connection to Indian Reserves. Though Cedar study sites are based in urban areas (Vancouver and Prince George), in a cross-sectional analysis involving 260 Cedar participants, more than a quarter had visited a reserve in the past six-month period, including 38% of those living in Prince George (Jongbloed, Thomas, et al., 2015). It is important to remember that both cities are located on unceded Indigenous territories of the Lheidli T'enneh and Coast Salish nations. As a result, many   13 participants living there continue to live on traditional territories their ancestors occupied for centuries, even though they do not live on reserve.  Residential School System  “We call upon the federal, provincial, territorial, and Aboriginal governments to acknowledge that the current state of Aboriginal health in Canada is a direct result of previous Canadian government policies, including residential schools, and to recognize and implement the health-care rights of Aboriginal people as identified in international law, constitutional law, and under the Treaties.”  – TRC Call to Action 18  Wellbeing is undermined and eroded when Indigenous children are forcefully removed from their families and communities, as they were through the residential school system (Aguiar & Halseth, 2015; Milloy, 1999, p. xxxvii; TRC, 2015a). Between 1874-1996, over 150,000 Indigenous children were removed from their families and placed in residential schools (RCAP, Erasmus, & Dussault, 1996a; TRC, 2015a). The system was an assimilationist strategy designed to sever the link between children and their families, languages, customs, and beliefs, in order to ‘kill the Indian in the child’ (Chansonneuve, 2005, p. 5; Milloy, 1999, p. 42; TRC, 2015c, p. 4). Children were taught to feel shame about their cultural heritage, ancestors, families, and spiritual traditions (Chansonneuve, 2005, p. 5). Sections 113-122 of the Indian Act (repealed in 2014) legally removed the rights of Indigenous parents to make decisions related to their children’s school attendance, essentially giving the government total control over children’s lives (Chansonneuve, 2005, p. 43). When parents did not want to send their children, school attendance was enforced by the Royal Canadian Mounted Police (RCMP) (Chansonneuve, 2005, p. 43; TRC, 2015a). It is essential to recognize that this state-sanctioned abduction of Indigenous children in and of itself constitutes a severe form of abuse as well as a violation of Indigenous self-determination (Chansonneuve, 2005, p. 44). The system has been described as “cultural genocide”, involving physical, sexual, emotional, and spiritual abuse; institutionalized neglect; medical experimentation; devaluation of cultural identity; harsh punishment; and exposure to serious illness (Chansonneuve, 2005; Milloy, 1999; Mosby, 2013; TRC, 2015a). Million has explained that the residential school system and its intergenerational effects on Indigenous peoples in Canada constitute a, “wound to their most basic relations: in family between men and women, between mothers and fathers and children, extending outward in the relations that are community, and finally, nation” (Million, 2013, p. 7).   14 There were 18 residential schools in BC (Kelm, 1999, p. 60). Survivors and their descendants are part of the fabric of Indigenous communities throughout the province.  Consequences for health and wellness. Physical, mental, emotional, and spiritual health consequences of residential school attendance have been profound, including while children were attending the schools, after they had left, and for their descendants. Reports from the residential school era demonstrate conditions (e.g., overcrowding, shoddy construction, poor ventilation, inadequate nutrition) at the schools contributed to spread of illnesses such as tuberculosis, while also lacking medical services or facilities to deal with health concerns (Milloy, 1999, p. 84; TRC, 2015a, p. 98). Per capita federal funding was kept low with the intention that it would be supplemented by the church; however, this resulted in schools being dangerously underfunded (Milloy, 1999, p. 118). In the early 1900s, Dr. Peter Bryce, the first federal official responsible for ‘Indian’ health, published findings demonstrating that 25 to 35% of children attending residential schools died (Lux, 2016, p. 8; Waldram et al., 2006, pp. 188-189). Parliament rejected his repeated requests for funding to address disease and lack of medical services within schools (Waldram et al., 2006, pp. 188-189). Estimates determined during the TRC process suggest that residential school attendees were 4-8 times more likely to die than the general population of Canadian school-age children (TRC, 2015a). However, this is likely a substantial underestimate, given mass destruction of documents coupled with reports by families of children who went missing (TRC, 2015a, 2015b). In a recent scoping review of the literature published since the last school closed, Wilk et al. identified 61 articles examining associations between attending residential school (42 studies) or being a descendant of someone who attended (38 studies), and both physical and mental health outcomes, (Wilk, Maltby, & Cooke, 2017). They found evidence of poorer general and self-rated health, increased rates of chronic and infectious diseases, mental distress, depression, addiction and substance use, stress, and suicidal behaviours associated with intergenerational residential school attendance (Wilk et al., 2017).  Specific mention of the intergenerational health and wellness consequences of wide-scale sexual abuses in the residential school system is necessary. Residential school survivors have testified to pervasive experiences of sexual abuse by staff, only some of whom have been prosecuted (TRC, 2015a). Though the full extent of the abuse cannot be quantified, as part of the Indian Residential Schools Settlement Agreement Independent Assessment Process, over 30,000 former students were awarded claims in recognition of physical and sexual abuse   15 experienced at the schools (TRC, 2015a, p. 108). Abuses in residential schools, as well as disruptions of traditional ways of life, have had severe and enduring repercussions for the health and wellbeing of Indigenous families as some survivors unintentionally re-created their own abuses at home (Pearce, 2014).  Resistance. Indigenous families and leaders have actively resisted Canada’s attempts at assimilation and cultural genocide via the residential school system (Dion Stout & Kipling, 2003). Many parents refused to send their children, and when it became mandatory under the Indian Act, resisted sending their children despite threat of violence (TRC, 2015a, pp. 116-118). Survivors’ courage to speak up about abuses led to creation of the Aboriginal Healing Foundation in 1998 to administer $350 million from the federal government to support community initiatives to heal the legacy of residential schools (Brant Castellano, 2008, p. 385). More recently, over 80,000 residential school survivors took the Government of Canada to court, which resulted in the largest class action settlement in Canadian history, the Indian Residential Schools Settlement Agreement. The settlement included a $2 billion compensation package and creation of the Truth & Reconciliation Commission of Canada (TRC). It also prompted public apology to survivors in 2008 by then Prime Minister Stephen Harper (Harper, 2008). During Canada’s TRC process, survivors and their descendants publically testified about their experiences in the schools and the consequences for themselves and their families (TRC, 2015a). In its final report shared in 2015, the TRC put forward 94 Calls to Action and a guiding framework for reconciliation in Canada (TRC, 2015a).  Related Cedar Project findings – residential school: Cedar participants are intergenerational survivors of the residential school system (Pooyak et al., In press). At baseline, more than half (55.9%) reported that they had a parent who attended residential school (Craib et al., 2009). Many others reported that they were “unsure” if their parents went to residential school, which may reflect survivors who have chosen to keep silent about their experiences or disconnection from family (Pearce, Jongbloed, et al., 2015). Second-generation residential school survivors in Cedar were more likely to have experienced childhood sexual abuse, have been involved in the child welfare system, have experienced sexual assault in adulthood, and be living with hepatitis C (Clarkson et al., 2015; Craib et al., 2009; Pearce, Blair, et al., 2015; Pearce et al., 2008).      16 Child Apprehension System  “Removing children from their homes weakens the entire community. Removing First Nations children from their culture and placing them in a foreign culture is an act of genocide” – Patricia Monture-Angus, Mohawk (Monture, 1989).  “We call upon the federal, provincial, territorial, and Aboriginal governments to commit to reducing the number of Aboriginal children in care” – TRC Call to Action 1  As the residential school era came to a close, wide-scale apprehension of Indigenous children into the child welfare system perpetuated removal of Indigenous children from their families and communities (Blackstock, 2003, 2007; TRC, 2015a). The TRC has argued that through its impact on families, the residential school system created conditions that facilitated the next wave of apprehensions during what is known as the Sixties Scoop (TRC, 2015c, p. 11). Between 1951-1991, tens of thousands of Indigenous children were removed from their homes and placed – often permanently – with non-Indigenous families ("Sixties Scoop Settlement Agreement," 2017). Like with the residential school system, the removal of Indigenous children from their homes and families was anchored by imposed settler government legislation and policy. In 1951, Section 88 of the Indian Act was amended and effectively delegated responsibility for Indigenous health, welfare, and education to the provinces (Bennett et al., 2005, p. 45; Sinha et al., 2011, p. 7). Funding arrangements incentivized apprehensions as per capita amounts were only released once a child was in custody, and little was available to support families to stay together (Sinclair, 2016; TRC, 2015c, p. 14). Between 1955-1964, the proportion of children in foster care who were Indigenous increased dramatically from less than 1% to over 34%, and continued to climb in the 1970s and 1980s (Johnston, 1983, p. 23; RCAP et al., 1996a, p. 3:22).  The Sixties Scoop era was followed by what is now being termed the ‘Millennium’ or ‘Millennial’ Scoop beginning in the early 1990s (Foster, 2018; Sinclair, 2007). A new federal funding formula policy known as “Directive 20-1” was instituted for First Nations child and family services, and again incentivized removal of children by only providing funds for those “in care” with no funds to support families to maintain custody (TRC, 2015c, p. 21). Directive 20-1, which remains in effect in BC, has led to profound funding disparities as on average, on-reserve First Nations child welfare expenditures were 22 to 30% less than those for non-First Nations   17 children, despite higher levels of need (Blackstock, 2016). Shortfalls have led to denials, disruptions, and delays in services, especially lack of funding for prevention services aimed at stabilizing families and keeping them intact, as well as culturally-safe services to address the context of intergenerational trauma stemming from the residential school system (Blackstock, 2016). Since the early 1990s, Indigenous child and family service agencies have been created and taken more control over the welfare of children in their communities; however, they remain bound by provincial child protection laws, and face barriers such as funding constraints for prevention initiatives (Blackstock & Trocmé, 2005). Today, Indigenous children continue to be overrepresented within child welfare systems across Canada, including in BC. Over half of children in foster care in Canada are Indigenous, despite making up less than 8% of children in the country (Statistics Canada, 2018c). For many years, the number of Indigenous children in care has exceeded the number enrolled in residential schools at their peak; estimates suggest the number of Indigenous foster children is three fold higher (Blackstock & Trocmé, 2005; Picard, 2018). Here in BC, although only 10% of children in the province are Indigenous, they comprise 60% of children in custody of BC’s Ministry of Children and Families (MCFD) (Special Advisor on Indigenous Children in Care, 2016). Indigenous children are 15 times more likely to be in care than non-Indigenous children in BC (Special Advisor on Indigenous Children in Care, 2016, p. 11).  Consequences for health and wellness. Involvement in the child apprehension system is a key determinant of mental, physical, emotional, and spiritual health of Indigenous children – during, after, and across generations (Tait, Henry, & Walker, 2013). A key assumption underlying the settler child welfare approaches across the country is that when children are apprehended they are placed in “nurturing, stable, and supportive foster home environments where they are able to thrive,” (Tait et al., 2013). However, considerable evidence exists that this presumption has not been realized. Context of the apprehension itself, especially if it includes witnessing parental distress and conflict, can be traumatic (Tait et al., 2013). Then there are experiences while in care which often includes multiple transitions and placements (Tait et al., 2013). Indigenous survivors of the child apprehension system have testified to experiences of violence while in custody of the state (Fournier & Crey, 1997, pp. 32, 37-39, 42-43, 85; TRC, 2015c, p. 17). Ansloos described that violence experienced during periods of apprehension includes bullying, sexual abuse, physical restraints by staff, criminalization, and lack of permanency in placements (Ansloos, 2017, p. 8). The TRC experienced challenges accessing comprehensive national data on deaths of Indigenous children in care, but identified   18 evidence of disproportionate risk of death among Indigenous children in care in Alberta and Ontario (TRC, 2015c, pp. 36-38). Further, they identified significant concerns in Manitoba and BC where all foster children are at increased risk of death, and Indigenous children are at drastically higher risk of being in foster care. Children in care in BC (Indigenous and non-Indigenous) are 3.7 times more likely to die than other BC residents the same age, with suicide, homicide and infectious disease among the leading causes of death (Provincial Health Officer for BC, 2006). Alarming reports of deaths of young Indigenous people in government care across Canada continued to make headlines while this dissertation was underway, including Tina Fontaine (age 15) found in Winnipeg’s Red River (died August 2014), Alex Gervais (age 18) who fell to his death from the Abbotsford hotel room where he was living alone (died September 2015), and Danny Francis (age 18) who took his own life in Port Alberni (died December 2015). Two other young Indigenous women died from overdose within months of aging out of care in Burnaby (Patricia Evoy, age 19, died March 2016) and Surrey (Santanna Scott-Huntinghawk, age 19, died November 2016), highlighting heightened vulnerability among young Indigenous people that continues after available MCFD supports and services come to an end.  In addition, involvement with the child apprehension system has been linked to severe health and social outcomes across the life course which are cause for tremendous concern (Ansloos, 2017, p. 38). Impacts of being placed with non-Indigenous families, and/or transitioning through multiple placements, on culture and identity are profound. As explored throughout this dissertation, cultural identity and belonging are important assets which support health and wellbeing for many Indigenous peoples. Mohawk lawyer Patricia Monture-Angus stated, “The effect of the child welfare process is to remove and then seclude First Nations children from their cultural identity and their cultural heritage” (Monture, 1989). While in residential schools, Indigenous children were at least surrounded by other Indigenous peers, this was often not the case in the foster care and adoptive system as the majority of placements were with non-Indigenous families (Sinha et al., 2011, p. 7). Especially when combined with experiences of violence, disconnections from family and identity can contribute to barriers to relational attachment and reinforce experiences of rejection and shame (Ansloos, 2017, p. 8; Tait et al., 2013). The future and survival of Indigenous cultures and traditional systems depend on children (Milloy, 1999, p. 9; Monture, 1989). Like the residential school system, the child apprehension system has intergenerational repercussions for transmission of Indigenous parenting values and skills, as well as cultural transmission more broadly (Varley, 2016).   19 Further, former foster children who have had negative experience may become parents themselves without having the chance to heal, and unwittingly contribute to stress or traumas in their own children’s lives. Finally, while much of the literature focuses on the impact of child apprehension on the child, it is also vital to recognize the impact of apprehensions on parents and extended family from whom the child is removed – a fact which comes up repeatedly in the subsequent chapters of this dissertation (Tait et al., 2013).  Resistance. As with the residential school system, Indigenous peoples have resisted the apprehension of their children in a myriad of ways, including protest and legal action. It is worth stating explicitly that this resistance stems from Indigenous peoples’ love for their children, as well as acknowledgment that Indigenous peoples are in the best position to make decisions affecting Indigenous children, youth, families, and communities (Blackstock, Cross, George, Brown, & Formsma, 2006). Throughout the colonial period, Indigenous peoples have sought to uphold traditional child safety laws and practices (Blackstock, 2007; Christian, 2010; Sandy, 2011). One example of successful action to protect this right was the Indian Child Caravan in 1980 (Christian, 2010; Sandy, 2011). Spallumcheen Indian Band made the decision to exercise their jurisdiction over child welfare in their community; however, the provincial and federal governments were resistant (Sandy, 2011, pp. 68-69). The Band and their supporters organized a march from Prince George through the province to Vancouver, where they camped on the front lawn of then Minister of Social Services Grace McCarthy (Sandy, 2011, pp. 68-69). The Caravan resulted in meetings with the province that led to agreement that the band has sovereign jurisdiction over their children (Sandy, 2011, pp. 68-69). Spallumcheen drafted a bylaw which has been frequently contested in the courts, but remains the only example of success in exerting First Nations jurisdiction over child welfare in Canada to date (Bennett, 2004; Sandy, 2011, pp. 68-69). Another example is recent legal actions taken against the Government of Canada. In January 2016, the Canadian Human Rights Tribunal ruled that the Government of Canada is racially discriminating against 163,000 First Nations children as a result of inequities in funding for on-reserve child welfare services (Blackstock, 2016; "First Nations Child and Family Caring Society of Canada et al. v. Attorney General of Canada, CHRT 2," 2016). After receiving four non-compliance orders, Canada finally agreed to respect the ruling in 2018 (Picard, 2018). Further, a number of class action suits have been brought against the government in provincial and federal courts in connection with the Sixties Scoop ("Sixties Scoop Settlement Agreement," 2017). In August 2017, an agreement was reached between parties setting out the terms of a single national settlement for Sixties Scoop survivors,   20 which includes individual payments and creation of a foundation dedicated to healing and reconciliation ("Sixties Scoop Settlement Agreement," 2017). Most recently on November 30, 2018, after years of work and lobbying by Indigenous leaders, then federal Indigenous Services Minister Jane Philpott made a new commitment to transfer child welfare to Indigenous governments (Tasker, 2018). As of June 2019, Bill C-92 An Act respecting First Nations, Inuit and Metis children, youth and families has been read three times in the House of Commons and received Royal Assent (Parliament of Canada, 2019a).  In sum, removal of children from their parents through both the residential school and child apprehension systems is a reflection of racist attitudes to Indigenous parenting and culture more broadly (Christian, 2010; Tait et al., 2013; TRC, 2015c). Current policies, ‘do not account for or respect Indigenous child welfare practices’ (Christian, 2010) and therefore undermine Indigenous peoples’ inherent right to self-determination (UN General Assembly, 2007). The effects of over 140 years (Figure 1.3) of child apprehensions are intergenerational and impact individuals, families, communities, and nations (Christian, 2010; Varley, 2016). State-enforced family disconnections contribute to ongoing traumas impacting the lives of Indigenous peoples across BC (Christian, 2010).   Figure 1.3: Timeline of over 140 years of state apprehension of Indigenous children   Related Cedar Project findings – child apprehension experiences: Cedar participants have been profoundly affected by the Sixties Scoop, which continued into the 1980s. A majority (65%) reported having been taken away from their biological parents; median age of first being removed was 4 years old (Clarkson et al., 2015). Those who had been apprehended were 2.6 times as likely to have experienced sexual abuse and 2.4 times as likely to have been living with HIV at baseline (Clarkson et al., 2015). Participants who had been apprehended were also more likely to have been homeless, paid for sex, diagnosed and hospitalized with mental illness, self-harmed, thought about suicide, and attempted suicide (Clarkson et al., 2015). Among   21 participants who used injection drugs, those who had been apprehended were more likely to have shared needles and overdosed (Clarkson et al., 2015). Further, Cedar participants are the parents of children who have been apprehended through the Millennial Scoop. Among 293 women involved in Cedar between 2008-2016, 78 (27%) of participants reported a combined total of 136 child apprehensions during the 8-year study period (Ritland et al., 2019). The incidence rate was 6.64 (95% CI: 5.25-8.29) child apprehensions per 100 person-years (Ritland et al., 2019). Mothers who reported having recently had a child apprehended were twice as likely to have attempted suicide (aHR: 2.0; 95%CI: 1.0-4.1), adjusting for other factors (Ritland et al., 2019).  Criminal Justice System  “We call upon federal, provincial, and territorial governments to commit to eliminating the overrepresentation of Aboriginal people in custody over the next decade, and to issue detailed annual reports that monitor and evaluate progress in doing so.” – TRC Call to Action 30  Mass incarceration and extreme punishment of Indigenous people persist and are a significant barrier to health and wellness. It has been suggested that Indigenous people are over-policed when it comes to criminalization, but under-policed when it comes to protection (Dhillon, 2015; The Lancet, 2016). Monture-Angus has linked these experiences with other colonial systems: “Indeed, the over-representation of First Nations peoples within institutions of confinement – be they child welfare institutions, provincial jails, or federal prisons – is part of a vicious cycle of abuse” (Monture, 1989). Further, Million stresses that incarceration of Indigenous people must be seen not simply as a ‘barrier to health’ but as another example of state-based violence (Million, 2013, p. 5). The police and courts operating in BC and Canada have been externally imposed on Indigenous peoples by, “a government they have not authorized and do not have effective participation within” (Dhillon, 2015). Understanding present-day relations between Indigenous people and the criminal justice system requires recognition of historic criminalization of Indigenous cultural practices and institutions through colonial law, as well as the role of Canadian police in carrying out these laws (Comack, 2013, p. 219; Dhillon, 2015). Distrust of the RCMP persists as a result of their role in enforcing the Indian Act, including apprehension of children to residential schools (LeBeuf, 2011, p. 8). According to the TRC, the residential school system has contributed to over-incarceration of Indigenous people (TRC, 2015c, p. 7). Children were forcibly removed from home, kept in prison-like institutional settings,   22 and treated like offenders (TRC, 2015c, p. 7). In addition, residential school experiences contributed to substance use among survivors and descendants; ongoing criminalization of drugs thus results in those who use them being in conflict with the law (TRC, 2015c, p. 8). Indigenous and non-Indigenous legal scholars have argued that over-incarceration of Indigenous peoples in Canada is a result of failure to recognize sovereignty, self-determination, and Indigenous legal perspectives (Monture, 1989; Ross, 2014).  In the present day, Indigenous adults accounted for more than a quarter of admissions to provincial or territorial correctional services in 2016/17, while representing just 4.1% of the Canadian adult population (Malakieh & Canadian Centre for Justice Statistics, 2018). This proportion has increased steadily over 10 years, from 20% to 27% (Malakieh & Canadian Centre for Justice Statistics, 2018). Overrepresentation of Indigenous people in the criminal justice system is especially pronounced among women (43% of all incarcerated women) and youth aged 12-17 (46% of all incarcerated youth) (Malakieh & Canadian Centre for Justice Statistics, 2018). Within BC, Indigenous people accounted for 30% of admissions to custody in 2016/17 (Malakieh & Canadian Centre for Justice Statistics, 2018). Indigenous women represent nearly half (47%) of incarcerations in BC (Malakieh & Canadian Centre for Justice Statistics, 2018). Both male (44%) and female (60%) Indigenous youth are significantly overrepresented among those incarcerated in the province (Malakieh & Canadian Centre for Justice Statistics, 2018). Researchers determined that in 2011, 305.1 (95%CI: 277.9-332.3) Indigenous people in BC per 100,000 were incarcerated, a rate 4.54 (95%CI: 4.52-4.57) times higher than among non-Indigenous people (Owusu-Bempah et al., 2014). Deeply concerning differences in life years lost to incarceration have been identified among Indigenous people compared to non-Indigenous people (Owusu-Bempah et al., 2014). On average, Indigenous men spend 3.75 times longer in BC custody and 6.18 times longer in federal custody than non-Indigenous men (Owusu-Bempah et al., 2014). Indigenous women spend on average 6.4 times longer in BC custody and 9.0 times longer in federal custody than non-Indigenous women (Owusu-Bempah et al., 2014). These disturbing disparities endure among street-involved youth in Vancouver: A longitudinal (2005-2013) analysis involving 1050 (24% Indigenous) participants in the At-Risk Youth Study (ARYS) observed that controlling for other factors, Indigenous participants had increased odds of incarceration (aOR: 1.4; 95%CI: 1.09-1.80), compared to non-Indigenous participants (Barker et al., 2015). Dhillon reminds us that incarceration is just one part of a “continuum of violence” in the criminal justice system as a whole, which begins   23 with initial police contact, followed by arrest, detainment, court, sentencing, jail, and probation (Dhillon, 2015).  Indigenous people involved in the criminal justice system also face disproportionate experiences of extreme punishment. Recent news coverage about Adam Capay, a young man from Lac Seul First Nation who spent more than four years in solitary confinement awaiting trial is an extreme example (Porter, 2016). Indigenous people in the Federal system are over represented in maximum security institutions, serve disproportionately more of their sentence behind bars before first release, and are disproportionately involved in institutional security incidents, use of force interventions, segregation placements, and self-injurious behaviour (Office of the Correctional Investigator, 2012). Diverse health consequences of incarceration have been well documented. Higher all-cause mortality, mental disorders, infectious disease, and suicide have been identified as negative health outcomes associated with incarceration in a comprehensive review of the health of prisoners globally (Fazel & Baillargeon, 2011). Many voices – both Indigenous and non-Indigenous – continue to call for a shift from a retributive to restorative approach to justice (Ansloos, 2017, p. 7; Ross, 2014, p. 202).  While Indigenous people are over-represented in the criminal justice system, it is also important to recognize the ways in which the system fails to protect and provide justice for them. Perhaps most visibly, the RCMP and other Canadian police forces have been severely criticized for failures to protect Indigenous women in the context of murder and disappearance, including lack of follow-up in the case of BC serial killer Robert Pickton, which would have prevented additional deaths (Eby, 2012; Oppal, 2012). As another example, while this dissertation was under way, two all-white juries failed to convict white men who killed Indigenous individuals in high-profile cases in Canada. In 2015, one jury agreed that Cindy Gladue – who was killed in the context of sex work in 2011 – had consented to sex rough enough to result in fatal internal bleeding, but that her client bore no responsibility in her death (Razack, 2016a, 2016b). In 2018, another all-white jury – from which Indigenous people were deliberately excluded – acquitted Gerald Stanley of both murder and manslaughter after he shot and killed 22-year-old Cree man Colten Boushie in 2016 (Roach, 2018).  BC also has a long and horrific history of abuses within the context of policing and criminal justice, including in the present day (Union of BC Indian Chiefs, 2005). Most recently, attention has been paid to serious concerns in Northern BC. In 2004, Prince George-based provincial   24 judge David Ramsay was convicted of buying sex from minors and sexually assaulting four young Indigenous women involved in sex work ("R. v. Ramsay 2004 BCSC 756," 2004). The Ramsay investigation led to additional sexual assault allegations against ten police officers, but ultimately no formal charges were issued, as a result of statute of limitations and internal investigation delays (Eby, 2012; Pan et al., 2013). A 2011 BC Civil Liberties study and a 2013 Human Rights Watch study both documented multiple reports of abuses by law enforcement from community members living near the Highway of Tears (Human Rights Watch, 2013). These include racist and sexist comments, excessive use of force, rape, and sexual assault by police officers (Human Rights Watch, 2013). In 2013, a Cedar paper was the third report to raise serious allegations of police misconduct in Northern BC (Pan et al., 2013). Despite this attention, complaints against police and criminal justice are still coming to the fore. In July 2017, Dale Culver, a young man from Wet'suwet'en and Gitxsan First Nations died in the back of an RCMP vehicle in Prince George after being pepper sprayed. The BC Civil Liberties Association has filed a complaint to the RCMP expressing concerns that officers may not have acted appropriately following the use of pepper spray, including by possibly failing to assist him after the incident, failing to provide immediate medical attention, and/or failing to follow procedures (Paterson, 2018). In addition, in 2018 during the overdose public health emergency, Alex Joseph, a young man from Nak’azdli Nation died of an overdose after being ignored by guards while he was in the back of a BC Corrections van despite the fact that his fellow inmates pounded on the walls and shouted for help for more than an hour (Bolan, 2018).  Resistance. One critical way that Indigenous peoples have resisted imposition of the criminal justice system is through upholding Indigenous legal and justice traditions (Borrows, 2005). An example is recent efforts by Marianne and Ronald Ignace to gather the shared knowledge of the Secwepemc people into a single source to make these laws and teachings accessible to community and public, as they have done so in Secwépemc People, Land, and Laws: Yerí7 re Stsq'ey's-kucw (Ignace & Ignace, 2017). Another example is the use of circles to address family violence in a number of Indigenous communities across the country (Ross, 2014). Resistance is also exemplified in Indigenous peoples’ use of protest, prayer, and ceremony when injustice is carried out in the name of justice, as I witnessed while attending rallies for Cindy Gladue and Colton Boushie while this dissertation was under way. Further examples of this resistance include when descendants of Indigenous peoples who endured miscarriage of justice in the past speak up for their ancestors so they are remembered and recognized, such as the   25 relatives of the five Tsilhqot’in chiefs who were executed following the 1864 war who have recently been exonerated by the BC government (2014) and federal government (2018).  Related Cedar Project findings – policing and incarceration: Cedar participants continue to be profoundly affected by the criminal justice system. Nearly 18% of participants had been incarcerated for over seven days in the six months prior to their baseline interview (Clarkson, 2009). Recent incarceration was significantly associated with current self-harm, injection drug use, ever having been in juvenile detention, and being male (Clarkson, 2009). Many participants have been stopped by police (73%), experienced physical force by police (28%), and had drug equipment confiscated (31%) (Pan et al., 2013). As expected, participants who reported dealing drugs (40%) were significantly more likely to experience police engagement (Pan et al., 2013). Policing activity was significantly associated with syringe sharing, rushed injection, and reusing syringes (Pan et al., 2013). Because of personal experience, practical concerns, and intergenerational legacies of unfair policing practices, most participants did not want a positive relationship with police (57%) (Pan et al., 2013). Desire for a good relationship with police was positively associated with having been helped by police, and inversely associated with having been stopped by police and/or experiencing physical force by police (Pan et al., 2013).  Healthcare system  “First Nations people have a right to access a healthcare system that is free of racism and discrimination and to feel safe when accessing healthcare. This means people are able to voice their perspectives, ask questions, and be respected by the healthcare professional on their beliefs, behaviours, and values. As partners in their own care, First Nations are entitled to be a part of their healthcare decision-making.” (FNHA, 2016a)  The healthcare system has also played a significant role in the colonization of Canada. Harmful health-related experiences have occurred in the past and in the present. Indigenous peoples continue to remember, witness, and experience harm within the healthcare system, with consequences for engagement with care and services. Further, the systems and legislation discussed throughout this chapter have suppressed and denied access to traditional health and wellness systems (Kelm, 1999; TRC, 2015c, p. 139). In contrast to Indigenous perspectives of health and wellness articulated above, a mainstream settler perspective of health tends to center on disease and infirmity – a ‘sickness’ perspective, which predominates within, and   26 orients the approach of, Canadian provincial healthcare systems (Gallagher, 2018; Howell, Auger, Gomes, Brown, & Leon, 2016). By failing to reflect the values of Indigenous peoples, and also actively causing harm, the healthcare system has and continues to contribute to health disparities experienced by Indigenous peoples (Adelson, 2005).  It is important to briefly outline the legislative backdrop of healthcare for Indigenous peoples in Canada and BC specifically. Provincial and territorial governments hold authority over healthcare under the Canada Health Act (Martin et al., 2018). However, the special relationship between Indigenous people and the federal government has also shaped the provision of healthcare, which has operated at a federal level (Martin et al., 2018; Waldram et al., 2006, p. 219). Throughout the 1900s, the Indian Health Service within the Department of Indian Affairs provided some medical services for Indigenous peoples. Settler historian Maureen Lux has suggested that these services grew primarily out of “deep anxieties about Aboriginal people and their perceived threat to the public’s health” (Lux, 2016, p. 19). In 1979, the federal government’s responsibility for healthcare for Indigenous peoples was formalized through creation of the Indian Health Policy (Martin et al., 2018). This has resulted in a semi-segregated and fragmented system of care for Indigenous people, as follows. On-reserve services were funded by the federal government, and Indigenous people with status are covered by a federal Indigenous-specific insurance plan (i.e., non-insured health benefits) (Gallagher, 2018; Loppie Reading & Wien, 2013; Reading & Halseth, 2013). In addition, Indigenous people also access mainstream health services offered by provincial health systems (Gallagher, 2018; Loppie Reading & Wien, 2013; Reading & Halseth, 2013). The degree of segregation has shifted over time; however, in all manifestations, the system has contributed to healthcare inequities (Martin et al., 2018; Reading & Halseth, 2013; Waldram et al., 2006, pp. 210-235). Allan and Smylie argue that, “race-based legislation has normalized the uneven distribution of health funding, resources, and services” (Allan & Smylie, 2015, p. 26). Currently, major changes are taking place as BC First Nations have entered into agreement with the federal and provincial governments to reclaim control over health funding and services for First Nations in this province, under the Indigenous-controlled BC First Nations Health Governance Structure (Gallagher, Mendez, & Kehoe, 2015; O’Neil, Gallagher, Wylie, Bingham, & Lavoie, 2016). Of note, transfer took place in 2013, while this dissertation was underway, and therefore the information presented here predominantly reflects the period prior to this shift.    27 One of the first collective memories of healthcare-related harm among Indigenous peoples in BC includes mismanagement and failure to provide vaccines that would have contained the spread of smallpox which resulted in drastic population declines in the 1800s (Union of BC Indian Chiefs, 2005). Some argue this denial of care was a purposeful act of genocide and paved the way for settlement of the province (Ostroff, 2017). In fact, when then BC Premier Christy Clark apologized to the Tsilhqot’in people for the wrongful execution of five of their chiefs in 1864, she acknowledged that, “reliable historical accounts” indicate that smallpox was spread intentionally (Clark, 2014). Painful memories of healthcare experiences in settler state-run institutions, including residential schools and Indian Hospitals, also continue to shape present day experiences of the healthcare system (Lux, 2016; Milloy, 1999, p. 84; TRC, 2015c). In many cases, ‘medical care’ in these contexts was underfunded, racially segregated, and coerced (Waldram et al., 2006, p. 196). In total, there were 22 segregated Indian Hospitals operating in Canada between the 1920s to 1980s (Lux, 2016, p. 3). Of these, three were in BC. Former patients have spoken out about hospital stays that lasted years. Human rights abuses experienced by Indigenous peoples within government-run health and educational institutions, such as coerced sterilization, medical experimentation and excessive use of restraints, continue to come to light (Boyer & Bartlett, 2017; Lux, 2016, p. 44; Mosby, 2013; Sterritt & Dufaitre, 2018). Like the intergenerational traumas of residential schools, traumas experienced within the context of ‘healthcare’ are also passed through generations. Recently, I have spent time with residential school and Indian Hospital survivors and their descendants who spoke powerfully of their memories of harmful healthcare experiences. While attending the University of Victoria’s Centre for Indigenous Research and Community-Led Engagement (CIRCLE) 2016 Gathering, I listened to Songhees Elder Joan Morris share her experiences at the Nanaimo Indian Hospital where her mother was sent two weeks after her birth and stayed for 17 years (Morris, 2016). She recounted memories of sterilization, electric shock therapy on genitals, mutilation, experimentation, and of her uncle being sent to the morgue before he was dead (Geddes, 2017; Morris, 2016). I use this example to illustrate that these experiences, which can seem so far in Canada’s past, are in fact within the living memory of the Indigenous peoples and families who we interact with in our day-to-day lives.  If we recognize that racism has shaped most of Canadian-Indigenous relations in BC for the past 150 years, including forming the foundation of the Indian Act and residential school systems, it becomes clear that encounters between Indigenous patients and non-Indigenous healthcare providers are also affected by deep-rooted racial bias, stereotypes, and racism that   28 thus far remain unaddressed in settler society (Harding, 2018; Reading, 2015; Waldram et al., 2006, p. 231; Wylie & McConkey, 2018). Resulting negative experiences can include instances when: concerns are discounted, assumptions are made about behaviour, someone is blamed or belittled, cultural health practices are diminished, and/or rights and agency are undermined (Allan & Smylie, 2015; Brian Sinclair Working Group, 2017; Goodman et al., 2017; Loppie Reading & Wien, 2013; Loppie et al., 2014). Indigenous people also witness family, loved ones, and other Indigenous people experiencing harm within the health system, which likely contributes to a perception that the system is unsafe and should be avoided. The Health Council of Canada suggests there is interplay between lack of trust in mainstream health services, combined with feeling alienated by a foreign system (Health Council of Canada, 2012).  Research documenting the impact of racism and discrimination experienced by Indigenous peoples seeking healthcare in BC is growing, including numerous studies by Browne and colleagues. Among 10 First Nations women living on-reserve in Northern BC, participants described experiencing dismissal by healthcare providers during which their concerns were not taken seriously, as well as feelings of being a ‘outsider’ in healthcare settings (Browne & Fiske, 2001). Participants felt that experiences of being dismissed by healthcare providers reflected judgement and negative stereotypes about Indigenous people, and that this was compounded by lack of understanding about coping mechanisms learned in residential schools leading survivors to avoid outward expressions of suffering (Browne & Fiske, 2001). In a qualitative study involving 35 participants including healthcare providers and First Nations patients (n=14), beliefs / assumptions about social and cultural differences between Indigenous and non-Indigenous peoples that were not viewed through the lens of settler colonial history and power dynamics contributed to differential treatment (Browne, 2007). Another qualitative study involving 44 Indigenous people attending an emergency department in a large teaching hospital in a Western Canadian city found that participants anticipated dismissal or diminishment of their health issues as a result of racialized stereotypes (Browne et al., 2011). Building on Browne et al.’s work, Goodman et al. explored the intersections of discrimination related to race and substance use in healthcare settings through talking circles involving 30 Indigenous participants who used illicit drugs in Vancouver (Goodman et al., 2017). Participants recounted experiences where they had been treated differently, including feeling demeaned, dismissed, threatened, and discharged without treatment by healthcare personnel (Goodman et al., 2017). In response to these harmful experiences, participants engaged   29 strategies to mitigate discrimination, which often amounted to avoiding care (Goodman et al., 2017). Concerns were also raised about healthcare interactions that failed to account for personal circumstances and determinants of health, such as if a late-night discharge resulted in inability to secure a shelter bed, leading to a night outside during a period of illness (Browne & Fiske, 2001; Goodman et al., 2017).  Further, experiences of racism and discrimination in the healthcare system have been gaining attention in the media. The story of Brian Sinclair, an Indigenous man who died of a bladder infection having never received care following a 34-hour wait in the Winnipeg Health Sciences Centre ER waiting room in 2008, is one high-profile example of how racism in the healthcare system can be fatal (Allan & Smylie, 2015; Brian Sinclair Working Group, 2017; Indigenous Health Working Group of the College of Family Physicians of Canada & Indigenous Physicians Association of Canada, 2016; McCallum & Perry, 2018). Similarly, recent news stories have documented instances of Indigenous people seeking emergency care in BC who experienced horrific and harmful delays in diagnosis that appear to result from racism and stereotypes related to substance use. Michelle Labrecque (Oneida Nation) presented to Victoria’s Royal Jubilee Hospital emergency department with a fractured pelvis three times prior to being diagnosed and treated (McCue, 2015). This experience reminded her of a previous ER visit at the same hospital when the doctor had given her a prescription, but when she got home she found that it was a crude drawing of a beer bottle circled with a slash through it (McCue, 2015). In August 2017, Gitxan father and husband Chuck Gray required four visits to Wrinch Memorial Hospital in Hazelton over four days before being diagnosed with a stroke and receiving treatment (Fundal, 2017). In September 2017, Mary Stewart (Skwah First Nation) sought help at Chilliwack General Hospital after being hit by a truck but was soon ordered to leave at threat of police involvement without treatment (Johnston, 2017). As she and her partner had no means of transportation or phone, they spent the rest of the night outside nearby (Johnston, 2017). They returned to the hospital the next day at the recommendation of her pharmacist, at which time she was diagnosed as having multiple fractures and a broken femur (Johnston, 2017). At present, no systematic investigation into the scope of the issue of racism in BC and Canada’s health system is available, and patient safety reviews continue to deny the role of racism in these events (Allan & Smylie, 2015; Brian Sinclair Working Group, 2017). Further, little research has been done about Indigenous peoples’ experiences with discrimination within healthcare, but outside of hospital contexts, such as at labs and pharmacies (Goodman et al., 2017).   30  Consequences for health and wellness. Collective remembering, witnessing, and experiencing harm in the healthcare system are intertwined and have a cumulative impact on Indigenous health and wellness. The impacts are felt through generations as Indigenous children witness their parents’ and grandparents’ own negative experiences and learn that healthcare is unsafe. Consequences of these systemic harms include: not receiving care required to prevent illness and death; re-traumatization; delays or avoidance of care until severely ill; emotional and social harm (e.g. anticipating harmful experiences; expecting not to be believed; engagement of stress response to cope with discrimination); and worse health outcomes (Allan & Smylie, 2015; Loppie et al., 2014; Tang & Browne, 2008). When Indigenous perspectives are not respected in healthcare settings, when legislation and lack of self-determination uphold a fragmented, imposed, and segregated health system, and when racism continues to be hard-wired in, the cycle of harm continues and health disparities between Indigenous and non-Indigenous people are maintained and reinforced (Allan & Smylie, 2015; Loppie et al., 2014; Reading & Halseth, 2013).   Resistance. Indigenous people have always contested the negation of Indigenous health systems and practices, as well as the pathologizing of Indigenous bodies (Kelm, 1999, p. xvi). One example is that Indigenous peoples have maintained their health and healing traditions despite colonial onslaughts (FNHA, 2014). Today, change is evident as Indigenous peoples across the country seek to assert their individual and collective rights to self-determination over healthcare through creation of Indigenous-led health organizations such as BC’s First Nations Health Authority (Gallagher, 2016, 2018; Gallagher et al., 2015; O’Neil et al., 2016). Communities and individuals are also beginning to seek redress for past harms. In 2018, a class-action lawsuit was filed in relation to forced detainment and abuse among former patients at Indian Hospitals (Pelley, 2018). As examples of racist treatment of Indigenous people in the current health system are given more weight, they must begin to be addressed through formal channels such as courts and regulatory bodies.  Section Summary The overwhelming lesson that I take away from the scholars and teachers cited in this section is that Canadian laws and institutions – including the Indian Act, residential schools, child welfare, criminal justice, and healthcare – have been imposed on Indigenous peoples and constitute ongoing state-based violence. While public discourse often views colonization as   31 something that has happened in the past, I cannot emphasize enough that the story of colonization (and not just its ‘legacy’) in Canada continues to unfold in the present moment. Ongoing impacts of these systems on the health and wellbeing of Indigenous peoples in Canada is profound, as discussed in the following section.  1.2.3 Ongoing impacts of colonization on health and wellbeing of Indigenous peoples Ongoing colonization resulting from the continuation of imposed settler laws and policies, has complex and multifaceted impacts on Indigenous people, families, communities, and nations. If self-determination is an important aspect of health and wellbeing, in contrast, lack of control over life circumstances contributes to a burden of stress which is known to contribute to poor health outcomes over the life course (Reading & Halseth, 2013). The following section discusses the role of colonization in contributing to historical and lifetime trauma; violence; racism and discrimination; economic hardship; housing instability; and food insecurity, each of which are well-known determinants of health (Loppie Reading & Wien, 2013; Reading, 2015; Reading & Halseth, 2013).  Colonial trauma: Historical, intergenerational, and lifetime  “When unspeakable things happen to a person and that trauma becomes buried deep within his or her soul, the soul is wounded and the body pays the price through manifestations of illnesses, substance abuse, and depression at levels dramatically exceeding those in the external, dominant society” (Duran, Duran, Yellow Horse Brave Heart & Yellow Horse-Davis, 1998 cited in Hovey et al., 2014)  “Aboriginal communities have suffered repeated shocks from epidemics, territorial displacement, and loss of control over their lives. Loss of children to residential schools laid down another layer of trauma and its distorting effects. When children returned from residential school lacking language and relationships and practical skills to reintegrate into the community, the capacity of extended families to support recovery from abusive and demeaning experiences was compromised by their own grief over multiple losses.” – Marlene Brant Castellano, Mohawk (Brant Castellano, 2008, p. 387)  Trauma can be understood as a harmful disruption impacting the spirit, body, mind, and heart requiring healing (Moran & Fitzpatrick, 2008 cited in Pihama et al., 2017). Historical trauma refers to the additive effects of multiple traumatic events occurring over generations experienced by Indigenous peoples in North America as a result of colonization, which have impacts at the levels of individual, family, community, and nation (Evans-Campbell, 2008).   32 Duran et al. describe the legacy of colonization as a “soul wound,” which is multigenerational, collective, historical, and cumulative, which contributes to a “historical trauma response” (Duran, Duran, Yellow Horse Brave Heart, & Yellow Horse-Davis, 1998, pp. 341-342). Ansloos has described the consequences of colonization as, “the alienation of many Indigenous people from their cultural traditions and identity” and that discontinuity and complex violence is perpetuated by the continuation of the neo-colonial systems described above (Ansloos, 2017, p. 5). Ansloos and others differentiate between complex trauma (e.g. intergenerational colonial violence) and acute trauma (e.g. witnessing an armed robbery), suggesting that colonial traumas manifest in both ways among Indigenous peoples (Ansloos, 2017, p. 8; Haskell & Randall, 2009). In addition, complex trauma can be cumulative (e.g., multiple unresolved traumas over the life course); collective (e.g., reverberate through a population, creating a universal experience); and intergenerational (e.g., when descendants of those who experienced colonial traumas show symptoms) (Phillips cited in Evans-Campbell, 2008; Pihama et al., 2017; Sotero, 2006). Indigenous scholar Amy Bombay (Rainy River First Nation) and colleagues further suggest that experiencing trauma contributes to risk of facing additional trauma, and also intensifies responses to traumatic stress, known as re-traumatization (Bombay, Matheson, & Anisman, 2009; Bombay, Matheson, & Anisman, 2014a).  Snohomish scholar Teresa Evans-Campbell identified three characteristics of a historical trauma event: (1) it is widespread and affects many members of a group; (2) it is perpetrated by people from outside the group, often with purposeful and destructive intent; and (3) it generates significant collective distress within the group affected (Evans-Campbell, 2008). Historical traumas may refer to different types of loss and violence, such as death of relatives; emotional suffering; forced assimilation; loss of land, language, culture, and spirituality; family and community disconnection; disruption of parenting traditions; and environmental degradation (Chansonneuve, 2005; Evans-Campbell, 2008; Whitbeck, Adams, Hoyt, & Chen, 2004; Yellow Horse Brave Heart, 2003). Haskell and Randall have emphasized that the defining feature of colonial trauma is “disrupted attachments” – to land, to self, and to others (Haskell & Randall, 2009). Put another way, trauma contributes to dismantling land-based, social, and cultural systems of care, identity, and belonging that usually keep someone safe and protected, as well as helping to maintain good family and community relations (Evans-Campbell, 2008; Wesley-Esquimaux & Smolewski, 2004, p. 4). Over 150 years of colonial assault on Indigenous families, including state-sanctioned child apprehensions, mean that some Indigenous children have   33 been denied the opportunity to grow and learn within responsible, loving, and caring parental and family relationships (Hovey et al., 2014).   Unresolved trauma is passed on to the next generation through a number of hypothesized pathways that may be direct or indirect (Duran et al., 1998; Evans-Campbell, 2008; Haskell & Randall, 2009; Wesley-Esquimaux & Smolewski, 2004; Whitbeck et al., 2004; Yellow Horse Brave Heart, 2003). One possible pathway is related to the family and social environment, for example the result of a community’s loss of spiritual compass, interrupted intergenerational transmission of healthy child-rearing practices, or unintentional re-creation of abuses (Aguiar & Halseth, 2015; Bombay et al., 2009; Chansonneuve, 2005, p. 61; Evans-Campbell, 2008; Kirmayer, Gone, & Moses, 2014). Another is the unconscious absorption of parental trauma or stress, referred to as the psychodynamic pathway of transmission (Haskell & Randall, 2009; Kirmayer, Simpson, & Cargo, 2003). Finally, traumatic experiences may have consequences for the body that are transmitted to children within genetic memory or during pregnancy (Aguiar & Halseth, 2015; Bombay et al., 2009; Bombay et al., 2014a; Haskell & Randall, 2009; Kirmayer et al., 2014). Most colonial traumas remain unaddressed / unresolved and Indigenous peoples continue to live side-by-side with the perpetrator of their abuse (Duran et al., 1998, p. 345; Yellow Horse Brave Heart, 2003). Throughout this dissertation I use the term “colonial trauma” as it recognizes that Indigenous peoples continue to feel the effects of traumas that began in the past, but that these are not ‘historic’ in the sense that new traumas continue to be perpetrated by imposed colonial systems and ongoing colonial violence (Evans-Campbell, 2008; Kirmayer et al., 2014; Whitbeck et al., 2004). Within the concept of colonial trauma, I will refer to historic, intergenerational, and lifetime traumas experienced by Cedar participants, their families, their communities, and their nations.  Colonial trauma response refers to a dynamic constellation of collective and individual reactions to historical and contemporary colonial traumas among some but not all Indigenous people (Brant Castellano, 2008, p. 388; Evans-Campbell, 2008; Yellow Horse Brave Heart, 2003). This is closely related to the stress response as understood within a mainstream biomedical sense, in which physiological and psychological processes are activated and increase allostatic load (Bombay et al., 2009; Institute of Medicine, 2001; Kirmayer et al., 2009). Individual reactions can include: bereavement, physical and psychological stress; fear; sadness; anger; loss of meaning; learned hopelessness; guilt and shame; marginality and alienation; identity confusion; challenges with emotional regulation; loss of trust in others;   34 difficulty forming/maintaining relationships: addictive or self-destructive behaviours; and mental health issues (Bombay et al., 2009; Chansonneuve, 2005, pp. 46-48; Duran et al., 1998, pp. 342-343; Evans-Campbell, 2008; Haskell & Randall, 2009; Sotero, 2006; Yellow Horse Brave Heart, 2003). Considerable evidence has linked intergenerational and lifetime trauma experiences with depression, anxiety, suicide ideation, and post-traumatic stress response (Bellamy & Hardy, 2015a, 2015b, 2015c; Bombay, Matheson, & Anisman, 2011; Bombay et al., 2014a; Kirmayer et al., 2003; O’Neill, Fraser, Kitchenham, & McDonald, 2018; Whitbeck, Walls, Johnson, Morrisseau, & McDougall, 2009). Learned hopelessness can be thought of as the result of cumulative assaults on collective and individual self-determination (Chansonneuve, 2005, p. 49; Wesley-Esquimaux & Smolewski, 2004, pp. 66-71). Through violent imposition of settler laws, Indigenous decision-making and agency have been systematically undermined (Haskell & Randall, 2009; Wesley-Esquimaux & Smolewski, 2004, pp. 66-71). Mainstream psychological research suggests that feeling powerless or lack of control over life situations and circumstances is a mediator of stress that can contribute to self-doubt, self-rejection, anxiety and depression, as well as having profound physical ramifications (Wesley-Esquimaux & Smolewski, 2004, pp. 66-71). It is important to note that many of the ‘symptoms’ of trauma response listed here are survival coping strategies in the context of ongoing colonization and colonial violence, and are not ‘character flaws’ or ‘cultural differences’ to be ascribed to Indigenous peoples on the whole (Evans-Campbell, 2008; Haskell & Randall, 2009; Mitchell & Maracle, 2005; Monture, 1989).  Indigenous scholars and others remind us that narrow focus on individual-level trauma response fails to address the broader relational impacts on families and nations (Bombay et al., 2014a; Evans-Campbell, 2008; Haskell & Randall, 2009; Mitchell & Maracle, 2005). Recent scholarly dialogue has problematized emphasis on ‘trauma’ (reaction to violence) and ‘healing’ (too individualized), at the expense of centering its cause (Canadian state-based violence) and collective cure (Indigenous self-determination) (Million, 2013). This is especially important given that of the five colonial laws and systems discussed in the previous section, just one – the residential school system – has come to an end. As a result, any discussion of ‘healing’ without seeking to dismantle, stop imposing, or address the harms of these systems does not make sense, and may in fact cause further harm (Clark, 2016; Goodkind, Hess, Gorman, & Parker, 2012; Million, 2013, p. 20). Concerns that the narrative of historical trauma may obscure the fact that Canada is in no way a ‘post’ colonial society are critical to keep in mind as we discuss the consequences of historical and contemporary colonization on health and wellbeing of   35 Indigenous people.   Related Cedar Project findings – trauma response and mental health: At baseline, 37.0% of Cedar participants reported they had ever attempted suicide (Moniruzzaman et al., 2009). Factors associated with suicide attempt included living in Prince George, ever having been sexually abused, and ever having overdosed (Moniruzzaman et al., 2009). A recent analysis involving 202 participants observed elevated psychological distress among those who had experienced severe emotional abuse in childhood and blackout drinking later in life (Pearce et al., 2018). Among women, any recent drug use was also associated with increased psychological distress (Pearce et al., 2018). Yet, being able to speak a traditional language and living by traditional culture were associated with lower psychological distress among men, and recently having tried to quit drugs was associated with lower psychological distress among women (Pearce et al., 2018). In an emerging Cedar analysis among 142 women involved in sex work, 67% had probable post-traumatic stress disorder (PTSD) (Sharma et al., 2018). Ever having attempted suicide was associated with higher likelihood of probable PTSD, while living by traditional culture was associated with lower likelihood (Sharma et al., 2018).  Physical and sexual violence Multiple examples of institutional violence against Indigenous peoples in Canada have been discussed in previous sections of this chapter. Colonization has also contributed to a disproportionate burden of interpersonal violence among Indigenous peoples, including physical and sexual violence perpetrated by state-based actors (e.g., police; residential school staff), non-Indigenous people, and other Indigenous people (i.e., lateral violence). Lateral violence (violence within Indigenous families and communities) can be understood as what Ansloos terms ‘relational imbalance’ resulting from colonial violence and intergenerational trauma (Ansloos, 2017, p. 95; Bombay, Matheson, & Anisman, 2014b; Duran et al., 1998, p. 347). Physical and sexual violence has mental, emotional, and spiritual consequences, in addition to the more obvious physical ones. Athabascan scholar Dian Million explains that violence (and rape specifically), “interrupts and dissolves the ontological presence of a person and community, their desire to be, to go on, to endure, to have integrity” (Million, 2013, p. 37).  Colonial dynamics have resulted in Indigenous families being over-represented in child maltreatment statistics. Some survivors of residential schools have unintentionally re-created their own abuse within their families and communities after returning home, contributing to   36 cycles of abuse affecting multiple generations. Conditions of colonization also contribute to increased risk of abuse experiences while wards of the state. In addition, Indigenous families have been subject to disproportionate surveillance and child welfare involvement which increases their representation within the available data. In the most recent Canadian Incidence Study of Child Abuse and Neglect (CIS-2008), rates of child maltreatment investigations were 4.2 times higher among First Nations children compared to non-First Nations children (140.6 vs. 33.5 investigations per 1000 population) (Sinha et al., 2011). Rates of substantiated child maltreatment were five times higher for Indigenous families than non-Indigenous families (Sinha et al., 2011). Further, in a 2013 survey involving all Indigenous youth (12-17) attending schools on and off reserve in BC, 19% of participants reported they had been physically abused and 15% had been sexually abused (Tourand et al., 2016, p. 44). Considerable evidence demonstrates that childhood trauma impacts health and wellbeing across the life course, including through increasing risk of re-victimization and intensifying stress response systems (Bombay et al., 2009).  Indigenous adults are also disproportionately affected by violence. In the 2014 Global Social Survey, nearly one in three (30%) Indigenous people reported that they or their household had been the victim of sexual assault, violent robbery, physical assault, theft, or vandalism in the preceding year (Perreault, 2015). In comparison, fewer than one in five (19%) non-Indigenous people reported that they or their household had been victimized (Perreault, 2015). However, high-level figures can obscure the gendered dynamics of violence against Indigenous people rooted in patriarchal colonial systems (Brodsky, 2016; Smith, 2015). In BC, we have witnessed the Robert Pickton, Highway of Tears, Clifford Olson, and Cody Legebokoff murders that have disproportionately affected Indigenous women (Oppal, 2012). Of the 67 women included in the BC Missing Women Commission of Inquiry, 33% were Indigenous (Oppal, 2012). This overrepresentation is also apparent in national estimates of missing and murdered Indigenous women (MMIW). Using publicly available data, Maryanne Pearce identified 3,329 women who are missing and murdered in Canada, including 824 (24.7%) who are Indigenous. While it provides comparative data, this study represents an underestimate as a 2013 RCMP-led study across all police jurisdictions in Canada identified a total of 1,181 missing or murdered Indigenous women (RCMP, 2014). Families of Indigenous women whose deaths have been deemed suicides or overdoses continue to call into question official rulings claiming no evidence of foul play and urge that their loved ones be included in the National Inquiry into Missing and Murdered Indigenous Women and Girls (Moore & Troian, 2016; RCMP, 2014;   37 Smith, 2016). Indigenous women also continue to be disproportionately impacted by both sexual assault (Perreault, 2015) and spousal violence (Statistics Canada, 2015a). Finally, despite the media focus on Indigenous women, Indigenous men and boys also face disproportionate threat of violence over the course of their lives, including being three times more likely than Indigenous women to be a victim of homicide, and seven times more likely to experience homicide than non-Indigenous men (Statistics Canada, 2015b). As discussed previously, Indigenous men also experience concerning levels of violence within the context of the criminal justice system (Razack, 2015).  Indigenous Elders and leaders also remain concerned about high rates of suicide in some communities, particularly among young people who are involved in substance use and/or the foster care system (BC Coroner's Service & FNHA, 2017; Jongbloed et al., 2017). Chandler and Lalonde monitored suicides in 196 BC First Nations bands between 1987-2000, determining that risk of suicide was 5-20 times higher for First Nations youth compared to non-First Nations youth, but that both youth and adult suicides were not evenly distributed across BC First Nations (Chandler & Lalonde, 2009; Lalonde, 2006). Over half of the bands had no suicides, suggesting the heaviest burden is borne by a small fraction of communities (Chandler & Lalonde, 2009; Lalonde, 2006). Since then, youth suicide rates among Indigenous people in BC have been declining, from a high of 5.30 per 10,000 between 1993-1997, down to 2.32 per 10,000 between 2009-2013 (Provincial Health Officer of BC & First Nations Health Authority, 2015). Still, between 2010-2016, nearly one-third of unexpected deaths among First Nations youth aged 15-24 in BC were suicides (BC Coroner's Service & FNHA, 2017).  Related Cedar Project findings – childhood trauma: Almost half (48%) of Cedar participants reported being forced to have sex or molested prior to enrollment in the study (Pearce et al., 2008). Sexual abuse was reported by 70% of young women compared to 29% of young men (Mehrabadi et al., 2008). Median age of first non-consensual sex was six years old. Sexual abuse was associated with sleeping on the streets, self-harm, mental illness, high numbers of sexual partners, sex work, and overdose (Pearce et al., 2008). Among 266 participants who completed the Childhood Trauma Questionnaire between 2011-2012, significant proportions of Cedar participants reported having experienced severe levels of physical abuse (41.4%); sexual abuse (38.7%); emotional abuse (33.8%); emotional neglect (17.8%); and physical neglect (39.4%) (Pearce, 2014). Severe sexual abuse was associated with having a parent who had attended residential school, as well as experiencing sexual assault later in life (Pearce,   38 2014). Other factors associated with having experienced severe sexual abuse included sex work involvement, inconsistent condom use, high frequency cocaine injection, binge injection, and hepatitis c infection (Pearce, 2014).  Related Cedar Project findings – sexual violence: Between 2003-2010, nearly 30% (n=73) of young women in Cedar ever reported having been sexually assaulted in the previous six months (Pearce, Blair, et al., 2015). Of these, 30 (41.1%) reported experiencing sexual assault more than once in that time (Pearce, Blair, et al., 2015). Just 15 (20.5%) had received counselling (Pearce, Blair, et al., 2015). Odds of sexual assault were higher for women who had a parent who attended residential school, experienced childhood sexual abuse, been involved in sex work, been offered money to not use condoms, used injection drugs, injected cocaine or opiates daily, binged with injection drugs, and experienced difficulty accessing clean syringes (Pearce, Blair, et al., 2015). Among participants in Prince George, 4% reported having been raped by members of the criminal justice system (Pan et al., 2013).  Racism and discrimination Racism in healthcare settings was discussed previously in this chapter, but it is also necessary to consider racism and discrimination as a determinant of health more broadly (Allan & Smylie, 2015; Loppie et al., 2014; Reading, 2015). Racism is an ideology that ascribes a hierarchy based on ethnicity or phenotype, and is used as a justification for discriminatory treatment of groups perceived as inferior (Loppie et al., 2014). Colonization and present-day systemic violence against Indigenous people is rooted in and perpetuated by racism in which Indigenous ways of life are viewed as inferior to those of settler communities (Loppie et al., 2014). Racism can be systemic (i.e. economic, social, and political institutions and processes that create and reinforce racial discrimination); interpersonal (i.e. acts of racism that occur between people); epistemic (i.e., racialized judgement of what is considered ‘knowledge’, ‘normal’, or ‘objective’); and internalized (i.e., internalization of negative, stereotypical beliefs) (Allan & Smylie, 2015, p. 5; Indigenous Health Working Group of the College of Family Physicians of Canada & Indigenous Physicians Association of Canada, 2016; Loppie et al., 2014). Intersectionality refers to recognition that some people experience discrimination as a result of multiple and intersecting identities and life experiences, including those related to substance use, sex, gender identity, sexuality, class, etc. (Hankivsky & Christoffersen, 2008). Haskell and Randall argue that one of the most harmful aspects of Canada’s systemic racism against Indigenous peoples is, “the mainstream tendency to deny any social responsibility for producing the very   39 conditions producing this marginalization and powerlessness, while simultaneously holding those so affected responsible for their own situation” (Haskell & Randall, 2009).  The epidemiology of racism and its health impact is complex, and few studies seeking to quantify these experiences among Indigenous peoples in Canada currently exist. One cross-sectional study involving a community-based sample of Indigenous people living in Edmonton, Alberta (n=372) observed that over 80% of participants had experienced discrimination in the past year (Currie, Wild, Schopflocher, & Laing, 2015). Researchers found that experiencing racial discrimination was associated with post-traumatic stress symptoms and prescription drug misuse (Currie et al., 2015). In another cross-sectional study involving 340 members of Kettle and Stony Point First Nation in Ontario, researchers found that racial discrimination assessed using the Measure of Indigenous Racism Experience (MIRE) Interpersonal Racism Scale was associated with significant increases in stress levels (Spence, Wells, Graham, & George, 2016). However, cultural resilience modestly compensated for the detrimental effect of racial discrimination on stress (Spence et al., 2016).  Related Cedar Project findings – racism: Among 321 Cedar Project participants, 255 (79.4%) experienced interpersonal racism as measured using the MIRE scale (Sharma et al., 2019). Of these, nearly half (n=102; 47.8%) had experienced high levels of interpersonal racism, most commonly from police, staff from government agencies including child welfare, health personnel and in public settings (Sharma et al., 2019). Experiencing high levels of interpersonal racism was more likely if participants were women (uOR: 2.68; 95%CI: 1.33-5.41), lived in Prince George (uOR: 3.30; 95%CI: 1.63-6.71), had had a child apprehended (uOR:3.14; 95%CI: 1.43-6.88), had been denied access to shelter (uOR: 2.15; 95%CI:1.08-4.31), had ever attempted suicide (uOR: 2.69; 95%CI: 1.27-5.71), and had traditional language spoken at home while growing up (uOR: 2.67; 95%CI: 1.23-5.80) (Sharma et al., 2019). Adjusting for other factors, the only significant predictor of experiencing high interpersonal racism was having experienced a child being apprehended (aOR: 3.58; 95%CI: 1.40-9.15) (Sharma et al., 2019).  Economic hardship, housing instability, and food insecurity  Disproportionate burden of negative social determinants of health among Indigenous peoples is a symptom of colonization (Nebelkopf & King, 2003). Colonization, particularly the Indian Act and residential school system, undermines land-based economies that have sustained   40 Indigenous peoples for generations, resulting in significant material inequities (Million, 2013, p. 105). Housing, employment/income, and food security affect health in complex and interconnected ways (King et al., 2009; Loppie Reading & Wien, 2013; Raphael, 2009; Reading & Halseth, 2013). Secure and adequate housing and employment make both material and meaning contributions in peoples’ lives. Their absence can contribute to negative mental, emotional, spiritual, and physical health and wellness outcomes, including stress, anxiety, depression, low self-worth, risk of violence, chronic illness, or hunger/malnutrition (Reading & Halseth, 2013). When basic necessities are not available, people may face forced compromises that negate their health, such as staying with a partner who does not keep them safe, or participating in illegal or dangerous work (Jongbloed, 2012; Jongbloed, Thomas, et al., 2015).  Related Cedar Project findings – housing instability: At baseline, 48 of 260 Cedar participants (18.5%) reported sleeping in six or more places (‘highly transient’) in the past six months (Jongbloed, Thomas, et al., 2015). Transience was independently associated with sex work, sexual assault, injection drug use, daily cocaine injection, and public injection (Jongbloed, Thomas, et al., 2015). After stratification, transience and sexual vulnerability remained significantly associated among women but not men (Jongbloed, Thomas, et al., 2015).  Section Summary Ongoing impacts of colonization on health and wellbeing of Indigenous people include colonial traumas and trauma response; violence; racism and discrimination; and material inequality leading to economic hardship, housing instability, and food insecurity. Previous Cedar research has documented the persistence of each of these concerns within the lives of young Indigenous people who have used drugs in BC.  1.2.4 Indigenist stress-coping model Coping with ongoing colonial violence, historical or lifetime trauma, discrimination, and material inequities contributes to high levels of mental and physical stress which takes a toll on physical, mental, spiritual, and emotional health and wellbeing (Loppie Reading & Wien, 2013; Mikkonen & Raphael, 2010; Raphael, 2009). Indigenous scholars Walters, Simoni and Evans-Campbell’s ‘indigenist stress-coping model’ suggests that experiencing colonial trauma contributes both directly and indirectly to increased risk of substance use, as well as both mental and physical illness (Walters et al., 2002). However, these negative outcomes may be ‘buffered’ by the   41 protective functions of identity, family, community, spirituality, and traditional healing approaches (Walters et al., 2002).   Strengths-based stress coping: culture, resilience, and resistance A growing body of literature focuses on individual- and community-level strengths, which support coping with stress stemming from historical and lifetime colonial traumas. These protective factors help to counteract risk and decrease individual vulnerability to adverse conditions (Dion Stout & Kipling, 2003, p. iii). Key interrelated strengths-based factors that I will return to throughout this dissertation include resilience, cultural connection, and resistance. Each is outlined briefly here.  Resilience refers to the ability to cope with adversity and attain good life outcomes despite emotional, mental, or physical stress (Brant Castellano, 2008, p. 395; Dion Stout & Kipling, 2003, p. iii; Fleming & Ledogar, 2008; Kirmayer et al., 2009). Others have highlighted that resilience is a dynamic and contextualized process in which internal and external resources support a person to build positive self-image, reduce the effect of risk factors, and break negative cycles (Fleming & Ledogar, 2008; Lalonde, 2006). Onkwehonwe scholar Bonnie Freeman shares, “Indigenous-based resilience is innate, spiritual, and is relational to the land and environment” (Freeman, 2017). In this way, resilience can be understood as operating at the level of individual, family, community, and Nation, and is closely entwined with personal agency and collective self-determination (Fleming & Ledogar, 2008; Freeman, 2017; Kirmayer, Dandeneau, Marshall, Phillips, & Williamson, 2011; Kirmayer et al., 2009; Lalonde, 2006; Lavallee & Clearsky, 2006). Supporting Indigenous resilience requires: (re)awakening concepts of self and personhood; connection to land; revitalizing language, culture, and spirituality; strengthening individual and collective agency; supporting families and healthy child development; and building social capital, networks, and support (Kirmayer et al., 2011; Kirmayer et al., 2009). Focus on resilience within Indigenous health research marks a deliberate shift from deficit-based research that incorrectly portrays Indigenous peoples as being inherently sick (the ‘disappearing Indian’) which has been used to justify colonial actions (Fogarty, Lovell, Langenberg, & Heron, 2018; Kelm, 1999, pp. xvi-xvii; Lavallee & Clearsky, 2006). Blackfeet/Crow scholar Iris HeavyRunner and colleague Kathy Marshall have powerfully summarized the concept of resilience:    42 “Resilience is the natural, human capacity to navigate life well. It is something every human being has — wisdom, common sense. It means coming to know how you think, who you are spiritually, where you come from, and where you are going. The key is learning how to utilize innate resilience, which is the birthright of every human being. It involves understanding our inner spirit and finding a sense of direction.” (HeavyRunner & Marshall, 2003)  Cultural identity, continuity, and connection are considered critical foundations of wellbeing, and include embedded practices that enable Indigenous people to navigate stress and adversity (Dion Stout & Kipling, 2003; Kirmayer et al., 2009; Kishebakabaykwe, 2010). In their work for the Aboriginal Healing Foundation, Wesley-Esquimaux and Smolewski noted that despite colonization and colonial trauma, Indigenous knowledge, ceremony, and teachings have been, “spirited away and safely stored in the homes, minds, and hearts of those that survived the terrible holocaust of the epidemics” (Wesley-Esquimaux & Smolewski, 2004, p. 85). In synthesizing Indigenous-led qualitative literature on cultural connectedness and continuity, Métis scholar Monique Auger identified that identity, cultural activities, healing practices, ceremony and spirituality, self-determination and self-government, and Indigenous values (respect, wholism, relationality) were central (Auger, 2016). Further, she emphasized a perspective of culture that is dynamic and includes transmission of culture through generations (Auger, 2016). A number of epidemiological studies have identified links between measures of cultural factors (e.g., cultural continuity, cultural identity, social support, family influence, community- and individual-level resilience) and improved indicators of health and wellness (e.g., lower rate of suicide, reduced stress, reduced substance use, higher self-reported health) (Baldwin, Brown, Wayment, Nez, & Brelsford, 2011; Chandler & Lalonde, 1998; Chandler & Lalonde, 2009; Currie, Wild, Schopflocher, Laing, & Veugelers, 2013; Lalonde, 2006; Richmond, Ross, & Egeland, 2007; Spence et al., 2016). Anishinaabe scholar Kishebakabaykwe Patricia McGuire says,  “Knowing who I am and where I