Medicine, Faculty of
Population and Public Health (SPPH), School of
DSpace
UBCV
Harding, Louise
Master of Science - MSc
University of British Columbia
This thesis explores meanings, priorities, and ethics surrounding brain wellness in an Indigenous health context in three stages: 1) an analysis of gaps in approaches to literature reviews, 2) a scoping review, and 3) a collaborative working group initiative. The design balanced knowledge generation and action (the what) with a focus on process and methods (the way) to bring together Indigenous and Western knowledges. In the process of preparing the search strategy for the scoping review, my gaps study yielded recommendations for mitigating challenges in locating literature about global Indigenous populations. The subsequent scoping review investigated the defining themes of academic research about global Indigenous peoples’ perspectives on the mind and brain. Within the 66 studies analysed, the most prevalent focus was on mental health and illness and the concepts of wellness, spirituality, holism and relationality were defining features. For the collaborative working group initiative, I established a 20-member working group that convened for three meetings with Elder-led sharing circles around the organizing questions: What is the meaning of brain wellness in an Indigenous health context? And, Does it include or is it included in mental health? To support cultural safety and appropriateness, the approach to the working group incorporated aspects of an Indigenous research paradigm alongside Western community engagement practices from neuroethics and patient-oriented research. I prepared a reflective summary of the meeting content that highlighted the need to reaffirm holistic conceptualizations of brain wellness and mental health, integrate Indigenous and Western healing approaches, pursue systems- and community-level changes to overcome the continuing health impacts of racism and colonization, and regain connections with culture and spirit. Outcomes from the group are new partnerships in research and a national research strategy for the brain sciences, a public community conversation, and a publication on methods. This work responds to the Truth and Reconciliation Commission’s 22nd Call to Action “to recognize the value of Aboriginal healing practices” in the context of brain wellness and mental health (Truth and Reconciliation Commission of Canada, 2015). It also contributes to the movement towards a more global, societally relevant, and decolonized future for neuroscience and neuroethics.
BRINGING TOGETHER INDIGENOUS AND WESTERN APPROACHES TO BRAIN WELLNESS AND MENTAL HEALTH: NOT ONLY THE WHAT BUT THE WAY by Louise Harding B.Sc., The University of British Columbia, 2016 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE in THE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES (Population and Public Health) THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) August 2022 © Louise Harding, 2022 ii The following individuals certify that they have read, and recommend to the Faculty of Graduate and Postdoctoral Studies for acceptance, the thesis entitled: Bringing Together Indigenous and Western Approaches to Brain Wellness and Mental Health: Not Only the What but the Way submitted by Louise Harding in partial fulfillment of the requirements for the degree of Master of Science in Population and Public Health Examining Committee: Judy Illes, Professor, Department of Medicine, UBC Supervisor Malcolm King, Professor, Department of Community Health & Epidemiology, University of Saskatchewan Supervisory Committee Member Chris Lovato, Professor, School of Population and Public Health, UBC Supervisory Committee Member Sarah Henderson, Associate Professor, School of Population and Public Health, UBC Additional Examiner iii Abstract This thesis explores meanings, priorities, and ethics surrounding brain wellness in an Indigenous health context in three stages: 1) an analysis of gaps in approaches to literature reviews, 2) a scoping review, and 3) a collaborative working group initiative. The design balanced knowledge generation and action (the what) with a focus on process and methods (the way) to bring together Indigenous and Western knowledges. In the process of preparing the search strategy for the scoping review, my gaps study yielded recommendations for mitigating challenges in locating literature about global Indigenous populations. The subsequent scoping review investigated the defining themes of academic research about global Indigenous peoples’ perspectives on the mind and brain. Within the 66 studies analysed, the most prevalent focus was on mental health and illness and the concepts of wellness, spirituality, holism and relationality were defining features. For the collaborative working group initiative, I established a 20-member working group that convened for three meetings with Elder-led sharing circles around the organizing questions: What is the meaning of brain wellness in an Indigenous health context? And, Does it include or is it included in mental health? To support cultural safety and appropriateness, the approach to the working group incorporated aspects of an Indigenous research paradigm alongside Western community engagement practices from neuroethics and patient-oriented research. I prepared a reflective summary of the meeting content that highlighted the need to reaffirm holistic conceptualizations of brain wellness and mental health, integrate Indigenous and Western healing approaches, pursue systems- and community-level changes to overcome the continuing health impacts of racism and colonization, and regain connections with culture and spirit. Outcomes from the group are new partnerships in research and a national research strategy for iv the brain sciences, a public community conversation, and a publication on methods. This work responds to the Truth and Reconciliation Commission’s 22nd Call to Action “to recognize the value of Aboriginal healing practices” in the context of brain wellness and mental health (Truth and Reconciliation Commission of Canada, 2015). It also contributes to the movement towards a more global, societally relevant, and decolonized future for neuroscience and neuroethics. v Lay Summary This thesis explores brain wellness in an Indigenous health context. The project started with an analysis of current challenges in finding literature about Indigenous populations. Then, I explored global Indigenous peoples’ perspectives about the brain and mind in published papers. These two grounding studies enabled me to establish a 20-member working group to collectively explore the meanings of brain wellness in an Indigenous health context over the course of three meetings. The approach to creating and convening the working group was grounded in Indigenous ways of knowing and generating knowledge. The working group’s discussions highlighted the need to reaffirm holistic conceptualizations of brain wellness and mental health, integrate healing approaches, overcome the continuing health impacts of racism and colonization, and regain connections with culture and spirit. The project supports the movement towards a more global, widely relevant, and decolonized future for neuroscience and neuroethics. vi Preface All work presented henceforth was completed in the Neuroethics Canada laboratory at the University of British Columbia, Vancouver campus. Chapters 2.2-2.4 have been published as: Harding L, Marra CJ & Illes J. Establishing a comprehensive search strategy for Indigenous health literature reviews [Internet]. Sys Rev. 2021;10(1):115. The authors of the article retain the copyright. The article is licensed under a Creative Commons Attribution-Non Commercial 4.0 International License. I collaborated equally with Marra CJ on the research and manuscript drafting, first identifying the research question and researching the landscape of the issue, and then identifying key areas for improvement and preparing the manuscript. Illes J was the supervisory author and was involved throughout the project in concept formation and manuscript composition. Chapters 3.2-3.5 have been published as: Harding L, Marra CJ, Manohara, V & Illes J. Ways of knowing of the brain and mind: A scoping review of the literature about global Indigenous perspectives [Internet]. J Neurol Res. 2022. The authors of the article retain the copyright. The article is licensed under a Creative Commons Attribution-Non Commercial 4.0 International License. I conceived of the project and led the design of the method we used to locate and analyse the articles, collaborating with Marra CJ on the search strategy. I reviewed all full-text articles for inclusion in the review, extracted and analysed data to identify the Indigenous communities, methods, and participant characteristics, and reviewed all of the data extraction and the analyses completed by the other team members. I drafted the majority of the manuscript with the exceptions of the sections “Foci of the articles” and “Ethics Content,” which were originally drafted by Illes J. Marra CJ and Manohara V created the tables, figures, and vii appendices under my instructions, and I finalized all formatting. Illes J was the supervisory author and was involved throughout in concept formation and manuscript composition. Small portions of chapter 4 have been published as: Harding L, King M & Illes J. Resilience in Indigenous health research during COVID-19 [Response]. CMAJ. 2020 Dec 16; and, Harding L, King M, Jinkerson-Brass S, Mercredi B, Wieman C & Illes J Engaging with Indigenous communities in brain science: Not only the what, but the way [Letter to the Editor]. Can J Neurol Sci. In press. The authors of both articles retain the copyright. King M suggested the original working group project idea, that I evolved independently under his and Dr. Illes’ guidance. I led the design, implementation, and data contemplation. I drafted both publications and the entirety of chapter 4. viii Table of Contents Abstract ......................................................................................................................................... iii Lay Summary .................................................................................................................................v Preface ........................................................................................................................................... vi Table of Contents ....................................................................................................................... viii List of Tables ............................................................................................................................... xii List of Figures ............................................................................................................................. xiii List of Abbreviations ................................................................................................................. xiv Acknowledgements ......................................................................................................................xv Dedication .................................................................................................................................. xvii Chapter 1: Introduction ................................................................................................................1 1.1 Statement of Positionality ............................................................................................... 1 1.2 Background ..................................................................................................................... 3 1.2.1 The Politics of Indigenous Peoples’ Health and Wellness in Canada ........................ 3 1.2.2 Research with Indigenous Peoples.............................................................................. 5 1.2.3 The Current Project ..................................................................................................... 8 Chapter 2: Establishing a Comprehensive Search Strategy for Indigenous Health Literature Reviews .......................................................................................................................10 2.1 Preface........................................................................................................................... 10 2.2 Background ................................................................................................................... 10 2.3 Main Text ...................................................................................................................... 11 2.3.1 Indigenous Database Approach ................................................................................ 12 ix 2.3.2 MeSH Approach ....................................................................................................... 13 2.3.3 Key Search Terms Approach .................................................................................... 15 2.3.4 Ways Forward ........................................................................................................... 17 2.4 Conclusions ................................................................................................................... 20 2.5 Afterword ...................................................................................................................... 20 Chapter 3: Ways of Knowing of the Brain and Mind: A Scoping Review of the Literature about Global Indigenous Perspectives .......................................................................................22 3.1 Preface........................................................................................................................... 22 3.2 Introduction ................................................................................................................... 22 3.2.1 The Right to Inclusivity ............................................................................................ 23 3.3 Methods......................................................................................................................... 24 3.3.1 Research Question .................................................................................................... 24 3.3.2 Statement of Positionality and Community Engagement ......................................... 25 3.3.3 Definitions................................................................................................................. 25 3.3.4 Search Strategy ......................................................................................................... 25 3.3.5 Data Extraction and Content Analysis ...................................................................... 27 3.4 Results ........................................................................................................................... 27 3.4.1 Overarching Features of the Articles ........................................................................ 27 3.4.2 Methods and Participants .......................................................................................... 30 3.4.3 Indigenous Communities .......................................................................................... 31 3.4.4 Foci of the Articles.................................................................................................... 34 3.4.5 Ethics Content ........................................................................................................... 36 x 3.5 Discussion ..................................................................................................................... 38 3.5.1 Limitations ................................................................................................................ 40 3.5.2 Overall Conclusions and Recommendations ............................................................ 41 3.6 Afterword ...................................................................................................................... 43 Chapter 4: Establishing an Indigenous Brain Wellness and Mental Health Working Group........................................................................................................................................................44 4.1 Introduction ................................................................................................................... 44 4.2 Methods......................................................................................................................... 45 4.2.1 Approach and Frameworks ....................................................................................... 45 4.2.1.1 Ethical Considerations ...................................................................................... 45 4.2.1.2 Indigenous Research Paradigm ......................................................................... 46 4.2.1.3 Patient-Oriented Research and Pragmatic Neuroethics .................................... 49 4.2.1.4 Ethical Space and Two-Eyed Seeing ................................................................ 49 4.2.2 Design ....................................................................................................................... 50 4.2.2.1 Preparing the Working Group ........................................................................... 51 4.2.2.2 Convening the Working Group ......................................................................... 54 4.2.2.3 Data Reflection and Presentation Approach ..................................................... 56 4.2.2.4 Mobilizing ......................................................................................................... 57 4.2.3 Summary of the Method ........................................................................................... 58 4.3 Results ........................................................................................................................... 59 4.3.1 Reflective Summary.................................................................................................. 59 4.3.1.1 Grounding: Who are we as a group and what is the topic? .............................. 60 xi 4.3.1.2 Directions: Where do we want to go as a working group? ............................... 64 4.3.1.3 Action: How will we get there? ........................................................................ 70 4.3.2 Actions and Outcomes .............................................................................................. 76 4.4 Discussion ..................................................................................................................... 77 4.4.1 Reflecting on Content: The What ............................................................................. 78 4.4.2 Reflecting on Method: The Way............................................................................... 81 4.4.3 Reflection on My Experience ................................................................................... 84 4.5 Conclusions ................................................................................................................... 85 Chapter 5: Summary and Conclusions ......................................................................................87 5.1 Summary ....................................................................................................................... 87 5.2 Overall Strengths and Limitations of the Project .......................................................... 88 5.3 Conclusions ................................................................................................................... 90 5.3.1 Future Directions ...................................................................................................... 91 References .....................................................................................................................................92 Appendices ..................................................................................................................................114 Appendix A ............................................................................................................................. 114 Appendix B ............................................................................................................................. 120 Appendix C ............................................................................................................................. 121 Appendix D ............................................................................................................................. 122 xii List of Tables Table 2.1 Challenges of global Indigenous search strategies and possible remedies……………17 Table 3.1 Overarching features of the dataset…………………………………………………...31 Table 3.2 Indigenous groups in the articles organized by frequency……………………………33 Table 4.1 Summary of the meeting themes and formats………………………………………...55 Table 4.2 Summary of my main reflections from each meeting…………………………………59 xiii List of Figures Figure 3.1 PRISMA flow diagram showing the process of inclusion of articles for the review [64]. ……………………………………………………………………………………………...29 Figure 3.2 Years of publication of all articles (n = 66), separated by research and review……...30 Figure 3.3 Number of total articles (n = 66) about Indigenous communities in countries around the world…………………………………………………………………………………………34 Figure 4.1 Diagram representing Indigenous research as the intersection of Indigenous and Western academic knowledge practices. Figure from Christie, 2006, licensed under CC BY 4.0: https://creativecommons.org/licenses/by/4.0/................................................................................47 Figure 4.2 Tobacco bundled in broadcloth for gifting to working group members (Photo by Louise Harding, 2021)…………………………………………………………………………...53 Figure 4.3 Letters, stones, and mailing labels for packages for working group members (Photo by Louise Harding, 2021) …………………………………………………………………………..54 Figure 4.4 A conceptualization of the connections expressed by working group members between brain wellness, mental health and other aspects of wellness in an Indigenous health context (Graphic by Louise Harding, April 2022)……………………………………………….62 xiv List of Abbreviations CBRS: Canadian Brain Research Strategy CINAHL: Cumulative Index to Nursing and Allied Health Literature JBI: Joanna Briggs Institute MeSH: Medical Subject Headings NLM: National Library of Medicine OCAP®: The First Nations principles of ownership, control, access, and possession (www.fnigc.ca) PRISMA: Preferred Reporting Items for Systematic Reviews and Meta-Analyses UNDRIP: United Nations Declaration on the Rights of Indigenous Peoples xv Acknowledgements I acknowledge my uninvited occupation of the traditional, ancestral, unceded territories of the xʷməθkʷəy̓əm (Musqueam), Sḵwx̱wú7mesh (Squamish), and Səl̓ílwətaɬ (Tsleil-Waututh) peoples. I offer my enduring gratitude to my primary supervisor Dr. Judy Illes for championing me and my work, and to the other faculty, staff and students at Neuroethics Canada for feedback and research assistance. Thank you, Dr. Malcolm King, for your collaboration which drove this project, and for your kindness and generosity as my supervisory committee member. Thank you, Dr. Chris Lovato, for joining my supervisory committee to guide me to completion of this thesis. And thank you, Dr. Mark Turin, for your mentorship and support through both of my degrees at UBC. Thank you to each member of the working group for your time and contributions, and for trusting me and others with your knowledge, stories, and ideas for change. To Elders Sharon Jinkerson-Brass and Bryce Mercredi for leading us from a place of truth and spirit, and to Dr. Nel Wieman for your shared leadership of the group and for generously connecting us with your networks. Thank you to my family, friends, classmates, and other supports for being there with me through the challenges of graduate studies. And especially to my partner Karan for always seeing and believing in me. I am grateful to have received funding for this work through a Canadian Institutes of Health Research Canada Graduate Scholarship Master's Award and a Graduate Fellowship in the xvi W. Maurice Young Centre for Applied Ethics. I acknowledge the research funding that Dr. Illes brought to various stages of the work from the North Growth Foundation, the National Institute of Mental Health (RF1#MH117805-01), the Canadian Brain Research Strategy (Canadian Institutes of Health Research, #171583;03027 IC-127354), as a Canada Research Chair, and as a Distinguished University Scholar and University of British Columbia Distinguished Scholar in Neuroethics. xvii Dedication I dedicate this thesis to the members of the Indigenous brain wellness and mental health working group. 1 Chapter 1: Introduction 1.1 Statement of Positionality I will begin by describing who I am, where I come from, and how I see the world to situate myself as a researcher in relation to my thesis project. This statement of positionality is influenced by those of settler scholar Andrea V. Breen (1) and Opaskwayak Cree scholar Shawn Wilson (2). I have always lived on the traditional, ancestral and unceded overlapping territories of the xʷməθkʷəy̓əm (Musqueam), Sḵwx̱wú7mesh (Squamish), and Səl̓ílwətaɬ (Tsleil-Waututh) Nations. As a White settler with British ancestry, I am unsettled by my uninvited presence on stolen First Nations lands and strive to tread lightly. For as far back as I am aware in my family history, all my ancestors have lived in England or Scotland. My father immigrated from England to Vancouver in the 1980s, and my mother’s parents immigrated from England to Vancouver in the 1950s. I grew up with a very limited understanding of colonization and the relationship between Indigenous peoples and Canada, and especially of the ways I benefit from settler colonialism and White supremacy. I first started learning about this while pursuing my undergraduate degree in biopsychology when UBC gave everyone a day off to attend the Truth and Reconciliation Commission’s main event in 2013. Hearing from residential school survivors and from the Honorable Murray Sinclair radically awoke me to start understanding the reality of what is happening in this country and my need to educate myself to do better. This experience also coincided with a time when I was becoming disengaged and disillusioned with my 2 biopsychology studies, as I felt that the broader human and societal contexts were lost when we attempted to use neurobiology to explain complex behaviours, emotions and processes. Over the following three years I enrolled in a minor in First Nations and Indigenous Studies, worked as a Research Assistant in the First Nations and Endangered Languages Program, and volunteered as a mentor to a youth at the Urban Native Youth Association. One of my most formative experiences was as a student in two introductory hən̓q̓əmin̓əm̓ (Musqueam language) courses that were taught by Elder Larry Grant and linguist Fiona Campbell at the Musqueam Community Centre in partnership with UBC. Following graduation I worked for two years as the Mentorship Program Facilitator at the Urban Native Youth Association, then I returned to UBC to conduct research with Dr. Judy Illes in Neuroethics Canada for one year before starting my master’s studies. I bring a tension between the possibilities and limitations of neuroscience together with what I have learned through Indigenous studies coursework and in the community to this project. While I have resisted and sought more expansive ways of understanding the world throughout my journey, my positionality as a White settler and my scientific training inherently influence my epistemology and ontology. The reductionist concept that phenomena can be explained by systematic relationships between variables has been prevalent in my academic training, and the disciplines of neuroscience and public health consider empirical data obtained through the scientific method to be the gold standard. Phenomena that are spiritual, emotional, or otherwise intangible are largely outside of the purview of these disciplines. I attempt to step outside of the traditional scientific method in my work by bringing elements of a transformative framework with the basic tenet being that knowledge is not neutral: 3 it reflects the structure of our society including oppression, domination, and hegemony (3). I am particularly interested in intersectional feminism and decoloniality, and I believe that knowledge construction should improve life for people in marginalized groups through collaboration and action agendas. By incorporating theories, interpretive frameworks, methods, and other learnings from diverse scholars, community activists and artists, I strive to minimize my biases and to elucidate and create space for different ways of understanding the brain, mind, and ethics through my work. 1.2 Background 1.2.1 The Politics of Indigenous Peoples’ Health and Wellness in Canada Identifying historic and ongoing settler colonialism in Canada is a critical starting point for understanding the landscape of Indigenous peoples’ health and wellness. Settler colonialism is a process that is rooted in White supremacy, capitalism, heteropatriarchy, and anti-Blackness (4). As described by historian Patrick Wolfe, it “strives for the dissolution of native societies” and “erects a new colonial society on the expropriated land base,” (5 p.388). Settler colonialism started with the first settlers and continues today in both explicit and insidious ways including the diminishment and disparagement of Indigenous languages, cultures, and ways of knowing and being (6), theft of land and destruction of the natural environment (7), removal of children from their communities through the child protection system (8), murder of Indigenous women, girls, and two-spirit people (9), and widespread systemic racism in the health care system (10). Despite calls for truth and reconciliation, the Canadian government has refused to sit at the table with Indigenous peoples to establish ways to live together that are co-operative and peaceful 4 (11). While this situation is not driven by ill intentions of citizens or governments in most cases, the effects are significant. They warrant a collective responsibility that critically reflects on underlying prejudices, stereotypes, and biases, and engages timely action. Indigenous peoples have always responded to colonization and oppression with resistance, resilience, and radical resurgence (4), pushing for change at all levels. Factors that have been identified in the literature as protective of health and wellbeing for Indigenous peoples include self-determination, self-government, learning and speaking Indigenous languages, connections to culture, ceremony, and spirituality, and close relationships with family, community, and the land (12–14). As powerfully described by late Indigenous political leader Arthur Manuel: “Canada is the sick one in the relationship, suffering from what sometimes seems like an incurable case of colonialism. It needs to change profoundly. And we must work with every fibre of our being to ensure that Canada does change.” (11 p.56) Manuel and others have fought for Indigenous peoples’ human rights at the United Nations through initiatives including the Working Group on Indigenous Populations starting in 1982, and the Permanent Forum on Indigenous Issues starting in 2000 (6). After decades of advocacy, the United Nations voted to adopt the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) in 2007, despite strong opposition and votes against by Canada, the USA, Australia, and New Zealand (15). Since then, these four countries have reversed their positions and now endorse the declaration (15). 5 In recent decades there has been increasing awareness among settler Canadians of the truths of the historic and ongoing oppression of Indigenous peoples in this country. For myself and many others, that awareness was catalyzed by the events, reports, and Calls to Action generated by the Truth and Reconciliation Commission of Canada (16). For many it started in May 2021 when the Tk’emlúps te Secwépemc First Nation confirmed the existence of the graves of 215 children who were students at the Kamloops Indian Residential School (17). While there is much more work to be done to increase understanding and stop the perpetuation of harm, more and more Canadians are learning the truth and pressing for urgent change. 1.2.2 Research with Indigenous Peoples When I consider the enormous debt that Canada owes to Indigenous peoples and my place in this as a settler scholar in public health and neuroethics, I reflect on how Indigenous peoples and their traditional knowledges can be simultaneously oppressed and commodified in Western1 society. Research has been a major instrument for this, as is well described by Nêhiyaw and Saulteaux scholar Margaret Kovach and Māori scholar Linda Tuhiwai Smith in their respective books which I draw on heavily in this thesis, Indigenous Methodologies and Decolonizing Methodologies: 1 I use the terms Western and Euro-Western interchangeably in this thesis to refer to the dominant culture and philosophy in Western Europe, Canada, the USA, New Zealand, and Australia. 6 “While colonization touched every aspect of Indigenous life, Western science has been instrumental in subjugating and discrediting Indigenous knowledge systems and peoples.” (18 p.64) “The word itself, ‘research’, is probably one of the dirtiest words in the Indigenous world’s vocabulary. […] The ways in which scientific research is implicated in the worst excesses of colonialism remains a powerful remembered history for many of the world’s colonized peoples. It is a history that still offends the deepest sense of our humanity.” (19 p.1) Smith and others trace the roots of imperialism and the exploitation of Indigenous peoples to the Enlightenment period. Freter, for example, has identified white supremacist rhetoric in the writings of Enlightenment philosophers Voltaire, David Hume and Immanuel Kant, concluding that the epistemological tradition that arose from this period “does not seem to be an epistemology of the human being, but only of the white human being,” (20 p.240). To address this, they call for the decolonisation of Western paradigms of research and knowledge through the interrogation, contextualisation and desuperiorisation of Western philosophical traditions. As such, an important basis for ethical research with Indigenous communities is centering Indigenous epistemologies, methods, and ethics, pursuing Indigenous driven research agendas with Indigenous leadership, and cultivating meaningful, long-term partnerships with communities (18). 7 Alongside the growing awareness of the rights of Indigenous peoples, there have been significant advances in research ethics. In Canada, ethical research practices for research with Indigenous peoples are governed by chapter 9 of the Tri-Council Policy Statement (TCPS 2; 21) and guided by documents and guidelines including Kirkness and Barnhardt’s The Four R’s – Respect, Relevance, Reciprocity and Responsibility (22), the Canadian Institutes of Health Research (CIHR) Guidelines for Health Research Involving Aboriginal People (23), and the First Nations Information Governance Centre’s OCAP® (ownership, control, access, and possession).2 As more Canadians gain awareness of the experiences of Indigenous peoples in this country, Indigenous scholars are leading the movement to decolonize how academic disciplines engage with Indigenous communities and knowledges. Ethical research partnerships that honour Indigenous ways of knowing about brain wellness and mental health can make important contributions to redressing health disparities (25). Mi’kmaq Elder Albert Marshall’s concept of Two-Eyed Seeing is a valuable concept for the work of bringing together Indigenous and Western approaches that will be referenced throughout this thesis: “[Elder] Albert [Marshall] indicates that Two-Eyed Seeing is the gift of multiple perspectives treasured by many aboriginal peoples and explains that it refers to learning to see from one eye with the strengths of Indigenous knowledges and ways of knowing, and from the other eye with the strengths of Western knowledges and ways of knowing, and to using both these eyes together, for the benefit of all,” (26 p.335). 2 OCAP® is a registered trademark of the First Nations Information Governance Centre (24). 8 Two-Eyed Seeing has been taken up as a guiding principle by leading health research and advocacy bodies in Canada including CIHR’s Institute of Aboriginal Peoples’ Health (27) and the Indigenous Knowledge Holders Group of the Canadian Brain Research Strategy (CBRS; 28). 1.2.3 The Current Project This thesis project has its roots in conversations that my primary supervisor Dr. Judy Illes and I initiated in late 2019 in conjunction with a mixed methods neuroethics project that explored the Canadian landscape of access to a highly specialized type of brain surgery called functional neurosurgery (29). Neuroethics studies the ethical implications of brain science and clinical practice. As a relatively new academic field formally established in the early 2000’s by Illes and colleagues it tends to bring a pragmatic approach that allows for the application of a range of methods and frameworks towards meaningful research outcomes (30,31). We opened conversations with seven healthcare providers, researchers, and knowledge holders in our immediate networks who work with Indigenous communities, four of whom identify as First Nations. We discussed the possible roles of culture and politics in the landscape of access to advanced brain interventions, and possible challenges and opportunities for equitable access for Indigenous, rural, and remote communities. One of the most influential conversations was with Dr. Malcolm King, a health researcher at the University of Saskatchewan and member of the Mississaugas of the Credit First Nation. He brought up questions around whether Indigenous peoples see the brain uniquely from other organs in the same way that Western biomedicine tends to, and whether brain wellness should be approached and considered differently from other aspects of wellness such as kidney health or heart health. In that 9 conversation Dr. King formulated the idea that shaped this project: to organize dialogues between Indigenous community members and academics about brain wellness and mental health. The purpose of this project was to explore and strategize around meanings, priorities, and ethics for brain wellness and mental health in an Indigenous health context. As I detail in this thesis, I began by analyzing gaps in current approaches to health literature reviews about Indigenous populations. Then I applied this information to conduct a scoping review that investigated the meanings of brain wellness for global Indigenous communities. Following the two preparatory studies, I established an Indigenous brain wellness and mental health working group to catalyze conversations, partnerships and collaborative action. As Dr. Illes is a co-lead of the CBRS and Dr. King joined the Indigenous Knowledge Holders Group in 2021, this project indirectly informs and is informed by the Canadian Brain Research Strategy (CBRS). Overall, I sought to balance knowledge generation, strategizing, and action (the what) with a strong focus on process and methods (the way) to ethically bring together Indigenous and Western knowledges. 10 Chapter 2: Establishing a Comprehensive Search Strategy for Indigenous Health Literature Reviews 2.1 Preface This chapter describes the preparatory study that led to the scoping review presented in chapter 3. I undertook the investigation with Marra CJ and Illes J when we encountered critical gaps in the guidance for developing a comprehensive search strategy for health literature reviews about global Indigenous populations. We endeavoured to understand and make recommendations to close these gaps to improve the breadth of our own review about global Indigenous peoples’ perspectives on the brain and mind. The article (32) was published in BMC Systematic Reviews, with a target readership comprising researchers who pursue improved methods for systematic and scoping reviews as well as the leadership of major journals, databases, libraries, and other organizations that index research. 2.2 Background The integrity and reproducibility of systematic literature reviews can only be achieved if appropriate strategies exist to capture relevant resources and communicate results. This is an especially important challenge for researchers whose interests lie in health as it pertains to Indigenous communities and other populations for which there is a highly heterogeneous collection of literature. In this area of research, investigators may ask a broad array of pressing questions that, on the one hand may be undifferentiated in some ways from studies that do not 11 specifically have an Indigenous focus, such as incidence of disease in a community or region, health priorities, and perceptions about the risks and benefits of novel treatments. On the other hand, investigators may seek highly specific information from Indigenous communities as they pertain to perspectives, individual and community consent, data ownership and control, ways of knowing, and systemic inequities and disparities. The unique human rights challenges facing Indigenous peoples today, including the right to health and the use of their traditional territories, languages and cultures, make upholding standards of justice, autonomy and equity in systematic as well as scoping review research involving Indigenous peoples an imperative. 2.3 Main Text Recently, we encountered critical gaps in a scoping review of the peer-reviewed literature about global Indigenous perspectives on brain health and wellness. The first significant one centers around the absence of a search strategy that effectively enables the comprehensive capture of relevant discourse surrounding Indigenous populations. No accepted universal definition of Indigenous exists to encompass the approximately 5,000 distinct Indigenous communities worldwide, comprising a population about 476 million people across 90 countries today, nor do all communities view it as desirable, per se (33,34). Without such a definition – however broad or specific – researchers must generate their own working terms, rely on those created from an array of existing sources to formulate a search strategy, or some combination of creative approaches. The net effects of this gap are inadequate and inappropriate search strings for which efforts are not only inefficient, but fundamentally compromise the reproducibility of information captured and the authenticity of data interpretation. 12 Here we provide examples and noteworthy attempts of how the task has been approached in the past and point out accompanying shortfalls that pertain to a lack of transparency, inclusiveness and acknowledgement of communities about which such research is conducted. We recognize that these are only select examples that illustrate our points. We make no value judgements and respect the intentions of the authors. We conclude with recommendations to improve the overall quality and scope of global Indigenous literature reviews. 2.3.1 Indigenous Database Approach Literature reviews depend on a selection of a representative set of databases from which researchers gather their resources. Examples of these are PubMed, Medline, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), the Native Health Database and Informit Indigenous Collections. In recent years, several research databases have been created that gather exclusively Indigenous content. The best available option is the large Informit Indigenous Collection, which is updated daily in consultation with Indigenous groups from both mainstream and obscure journals, and other sources (35). However, we challenge whether their claim to provide content "of relevance to professionals and researchers involved in indigenous issues locally and globally" is accurate given that they only draw resources from limited regions of the world, namely Australia, Indonesia, Malaysia, New Zealand, North America and the Pacific. The collection is also limited with content that begins in 1977. An even more limited database by contrast – the Native Health database – archives work solely on North American 13 Indigenous peoples (36). While it does contain historical resources, it is functionally more limited than Informit Indigenous Collections, as it does not support the capability for complex searches or the export of articles. Given such limitations, researchers must look to complement their literature searches with larger, non-specific databases. This generates a circular capture problem in that it necessarily involves the formulation of a string of search terms that encompass Indigenous populations globally; however, due to the ongoing challenges of creating a globally comprehensive search string, search returns frequently fail to support the intended purpose of the research. 2.3.2 MeSH Approach The Medical Subject Headings (MeSH) indexing system created by the National Library of Medicine (NLM) for journal articles and books in the life sciences is used widely across major databases such as PubMed and Medline (37). Other databases, such as the Cumulative Index to Nursing and Allied Health Literature (CINAHL), use an adapted MeSH set (38). While they can be very useful for narrowing the results of a large literature search, when our team attempted to select MeSH terms for the search strategy, we encountered issues around consistency, validity, transparency, and organization. In 2020, the National Library of Medicine (NLM) added the MeSH term “Indigenous Peoples” under their Ethnic Group category, defining its scope as: “Descendants who self-identify as members of a group who inhabited a country or region at the time when people of different cultures or ethnic origins arrived. They often maintain their distinct language, culture, 14 and beliefs.” Meanwhile, the corresponding Indigenous Peoples MeSH term in the Cumulative Index to Nursing and Allied Health Literature (CINAHL) is: the “Native population of a country, region, or area.” Having two MeSH terms with the same name in different databases presents a challenge for researchers who may assume that the definition is consistent. However, settling on any single definition can be problematic in and of itself, as it may lack aspects critical in defining Indigeneity for some groups, such as “acceptance by the community” as per the Métis people of Canada (34 p.292). Additionally, while the CINAHL MeSH term has multiple subheadings for a range of global Indigenous groups, the NLM system only includes a subheading for Alaska Natives without providing any explanation for why this specific group was singled out. Neither database specifies how it systematically applies these very general definitions to the practical task of indexing articles. Transparency is not only important for the critical evaluation and use of subject headings, but also in upholding accountability to the Indigenous experts who are presumably consulted in the creation of such definitions. An example where this lack of transparency causes a problem is that Roma peoples are indexed as a distinct ethnic group in the NLM MeSH system, but whether they are also classified as Indigenous peoples, as some Roma people self-identify as both, is not indicated. The NLM also has additional MeSH terms that encompass Indigenous groups under their Continental Population Groups heading, the result of which is a convoluted organizational scheme that can skew search results. The four ancestry groups are: American Native Continental Ancestry Group, Oceanic Ancestry Group, African Continental Ancestry Group and Asian Continental Ancestry Group. While the scope notes, entry terms, and related headings for the first two continental groups in this list only refer to Indigenous populations (e.g., Alaska Natives, 15 Native Hawaiians), none of the information provided about the MeSH for African and Asian Ancestry Groups explicitly alludes to the concept of Indigeneity. As such, many researchers will just include the American and Oceanic Ancestry Group MeSH in their search strategies, which may contribute to an overrepresentation of discourse about these Indigenous groups in global literature reviews. 2.3.3 Key Search Terms Approach Keywords for Indigenous literature searches will typically, if not naturally, start with umbrella terms such as Indigenous, Aboriginal and Native. Using only these general search terms can be acceptable with adequate acknowledgement of their limitations, but many researchers pursue further breadth by adding a range of more specific terms. However, from what we have observed in the literature, this well-intentioned pursuit often results in the underrepresentation of Asian, European and African Indigenous groups. For example, the authors of a systematic review about the factors that influence Indigenous peoples’ cancer treatment decision making used two umbrella terms and three specific keywords referring to groups in the United States, Australia, and New Zealand (39, see Tranberg et al. in Appendix A). As a result, the five articles that met their final inclusion criteria were about Australian Indigenous groups. We note the authors’ acknowledgement of their error in assuming that the search terms they chose could encompass all Indigenous groups globally. Similarly, in a systematic review comparing the incidence of suicide among Indigenous peoples with other populations, the authors used a search list with 45 Indigenous communities for their review without justifying why those few communities were chosen to represent all Indigenous 16 peoples (40, see Pollock et al. in Appendix A). While the authors acknowledge the possibility of bias given challenges around defining Indigenous peoples and their limited search terms, they still assert that their search encompasses global Indigenous populations comprehensively. Some authors have attempted to create their own complete lists of worldwide Indigenous communities with various successes and failings. For example, the systematic review protocol of Bishop-Williams et al. (41) for studying the associations between weather parameters and acute respiratory infection outcomes in Indigenous and non-Indigenous peoples included an extensive list of community names compiled from two major international sources. Theoretically, the scope of their list is global as it includes many international Indigenous groups. However, the search string is neither transparent nor complete; it includes small communities such as the Squamish and Haida Nations of the Pacific Northwest, but excludes other local nations such as Tsleil-Waututh and Cowichan (see Bishop-Williams et al. in Appendix A). The authors acknowledge the challenges of their undertaking by stating that “[i]t is difficult to develop a search strategy that is robust enough to represent all nuances of the ter[m] Indigenous,” (p. 4) yet carry forth with the assumption that their search had an adequately global scope. The danger of such a dismissal is that the biases inherent in the original methods can be perpetuated if adopted uncritically by subsequent researchers. As a case in point, the authors of a 2020 scoping review examining how “global Indigenous mental health is impacted by meteorological, seasonal, and climatic changes” (42 p.1) replicated the search strategy that was created by Bishop-Williams et al. with only very minor adjustments, and did not acknowledge any of the potential limitations or biases (see Middleton et al. in Appendix A). Such oversight can effectively silence the voices of certain Indigenous communities and sustain 17 a cycle of biased, incomplete and inaccurate discourse, even while researchers endeavour to be productive advocates of justice for Indigenous peoples. 2.3.4 Ways Forward Towards the goal of improving the rigour of methodology for global Indigenous literature reviews, we suggest four changes in current practice: establish one or more databases of literature about global Indigenous populations, improve transparency about classification strategies, create a living list of Indigenous communities, and promote critical thinking and reflection on the part of researchers to ensure the appropriateness and reproducibility of their search methods (Table 1). As all of these tasks will necessarily involve continued, deep collaboration with Indigenous Knowledge Holders, we also recommend that the work of these experts be identified and acknowledged. Methodological Challenges Remedies Absence of a comprehensive Indigenous database. Establishment of one or more databases that index global, historical, and contemporary literature about Indigenous populations. Lack of transparency and accountability for how definitions of Indigenous peoples are operationalized. Databases and other bodies that index Indigenous resources should provide explicit details about how they determine if a given community is classified as Indigenous under their definition. Incomplete, piecemeal, and selective search term strings. Creation of a list of global Indigenous communities. Researchers erroneously assert that their search strategies encompass global Indigenous populations. Researchers should critically consider and articulate the rationale for both the inclusion and exclusion of populations, and account for inherent limitations. Table 2.1: Challenges of global Indigenous search strategies and possible remedies. 18 The establishment of a novel Indigenous database or improvement of an existing one such as Informit Indigenous Collections would functionally eliminate the need for researchers to create arduous and complex search strings to encompass global Indigenous populations. Such a database would allow researchers to seamlessly locate the relevant discourse regarding Indigenous peoples globally. As the many possible definitions of Indigenous will need to be taken into account and applied transparently to indexing, multiple databases may be required to collectively serve this purpose. Other databases and the organizations that index resources must also be transparent about how they are operationalizing their definitions of Indigenous peoples. For example, public access to the inclusion and exclusion criteria used by the National Library of Medicine for their MeSH terms would enable researchers to critically structure their search strategies. Whether as part of this undertaking towards transparency or as a separate endeavour, the creation and maintenance of a comprehensive list of global Indigenous communities is needed. This will be resource-intensive to create, but its upkeep can be managed with a commitment to the task that is reflected in clearly defined operational procedures and a sustainable funding source. Such a list must skillfully incorporate a number of different possible definitions of Indigenous peoples, which will involve consulting with Indigenous communities about how they wish to be identified. Researchers may then use this list to create universally accepted working search strategies. Researchers may reference the date they accessed the search strategy in their methodology, and disclose any amendments they have made to answer their specific research questions. Such a list would also have an important impact on other types of work with 19 Indigenous communities, such as serving advocacy and humanitarian purposes, and be a model for others. Throughout the implementation of these three recommendations, consultation with Indigenous Knowledge Holders and other experts will be essential. Accordingly, we further recommend that the rationale for selecting these community contributors be noted explicitly, and their important work acknowledged. Finally, until better methodologies for searching for global Indigenous groups are available, it is incumbent on researchers to critically consider and report which Indigenous groups and perspectives are most likely to be encompassed by the search strategies they formulate, and to acknowledge how this will impact their study results. Researchers who engage in this level of reflection at the time of developing their search protocol will likely find that using inclusive search terms and a broad range of databases will enhance the quality of their search. While out of scope for detailed discussion in this article, the inclusion of gray literature can also add breadth and an additional analytic layer. It is no longer acceptable for researchers to use biased or otherwise limited search strategies and then claim to capture global perspectives. In line with the concept of ethical reproducibility for the transparent reporting of research ethics methods used by biomedical researchers (43), literature reviewers also have an obligation to apply and report ethical considerations. Further, this interim effort will require support by international research bodies, major libraries, and academic publishers (e.g. Cochrane, National Library of Medicine, the American Association for the Advancement of Sciences) to set clear guidelines for search strategies including Indigenous populations. 20 2.4 Conclusions In our own endeavour to create a literature review search strategy that encompasses global Indigenous populations, we were not able to find a precedent study with methodology that satisfied the criteria of comprehensiveness, rigour, and transparency. This raised important concerns for us about the quality and representativeness of much global Indigenous literature review research, and disorganized or uncoordinated, approaches, and one-off methodologies. The process of improvement has already slowly begun with the creation of Indigenous databases and improved subject headings, and we call for greater urgency and attention to the ethical imperative of moving away from the status quo.3 Ultimately, until options are available to address these challenges, authors must take extra care to acknowledge the limitations of their search strategies in order to avoid perpetuating oppressive notions of who is Indigenous and who is not. Indeed, it is essential that the methodologies used in such research do not inadvertently perpetuate the very same oppressive paradigms they aim to remediate. 2.5 Afterword The work presented in this chapter was critical for preparing the search strategy that I applied in the subsequent chapter to locate studies about a larger number and diversity of Indigenous peoples around the globe. After publishing the article, we became aware of a new resource by the 3 Between writing the first version of this manuscript and its publication, the National Library of Medicine introduced its 2021 Medical Subject Headings (MeSH) that include improved organization and categorization of North American Indigenous populations under the existing heading, Indians, North American. 21 University of Alberta’s library that provides filters (pre-constructed search strings) for reviews about Indigenous peoples in Canada, Australia, New Zealand, the United States, Northern Europe and Latin America (44). That resource fills an important gap by supporting the creation of comprehensive search strings about Indigenous communities in the regions that have been included so far and will become increasingly useful as it continues to be updated and expanded. Our published article was shared at the first meeting of the Indigenous Knowledge Holders Group of the CBRS (45), on the CBRS website (46) and was cited in an article about a workshop held by the CBRS Indigenous Knowledge Holders Group (28). The article garnered significant online attention according to the score provided to the journal by the company Altmetric, which ranks the quality and quantity of online attention that research outputs receive (47). As of July 31, 2022, the Altmetric Attention Score places the article in the 94th percentile of the (over twenty million) research outputs ever tracked by Altmetric and it has been accessed 2251 times. 22 Chapter 3: Ways of Knowing of the Brain and Mind: A Scoping Review of the Literature about Global Indigenous Perspectives 3.1 Preface This chapter details the scoping review through which I investigated concepts of brain and mind in a global Indigenous health context. The knowledge gained directly contributed to the overall goal of this thesis project to understand meanings, priorities, ethics and methods for brain health and mental wellness in an Indigenous health context. It also provided the foundation for the Indigenous brain wellness and mental health working group presented in the subsequent chapter. The article (48) was published in a special issue of the Journal of Neurology Research that focuses on health equity. This journal has target audiences of practitioners and researchers in neurology and neuroscience. 3.2 Introduction Civilizations around the world have long thought philosophically about the nature of the human mind and brain and attempted, with varied success, to alleviate the unbearable suffering that can arise from brain and mental health disorders. While the emergence of the neurological sciences in the 20th century has drawn upon knowledge from diverse cultures and communities, Euro-Western biomedical frameworks for understanding the brain have come to largely dominate global approaches to brain research and clinical care. 23 Recently, extraordinary momentum in the field of neuroscience has been channeled into the establishment of large-scale, multinational brain initiatives coordinated by the International Brain Initiative (49) involving Canada (50), the USA (51), Europe (52), Australia (53), Japan (54), South Korea (55) and China (56). While this movement has called for a global collaborative neuroscience (49,57), the epistemologies of Indigenous and other medically underserved and culturally diverse populations have yet to be fully developed within these endeavours. We believe that this is a gap that perpetuates the notion that neuroscience is culture-free and constrains the potential positive impact of these initiatives on diverse patient communities. In addition, it may hinder sharing of advances in neuroscience knowledge between and about communities that have radically different ways of thinking and knowing about the brain and mind. 3.2.1 The Right to Inclusivity Indigenous peoples’ pursuit of brain health has been challenged by the violation of their rights to practice their cultures, speak their languages, and engage in traditional medical practices, among other rights. While there has been progress in the recognition of the rights of Indigenous peoples in recent decades through legislation, grassroots movements, and the establishment of the United Nations, the full impact of recent initiatives such as the 2007 United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) remains to be seen. Summarized in the words of the late Indigenous political leader Arthur Manuel, “[Indigenous peoples’] poverty is not an accident, the result of our incompetence or bad luck, it is intentional and systematic,” (11 pp.70-71). 24 Despite ongoing systemic oppression, Indigenous knowledges and healing practices endure today and contribute to the resilience of communities and to global understandings and approaches to health and wellness. In Canada where our team of settler and Indigenous neuroethics researchers is located, Indigenous-led movements have become an important feature of the healthcare landscape through engaging diverse stakeholders to achieve community-identified goals (58). Cross-cultural work by our team with the Tahltan First Nation in northern British Columbia surrounding genetic testing for early-onset familial Alzheimer’s disease (EOFAD) provided an example of how consideration of traditional knowledge and biomedical explanations of disease can together provide meaningful engagement with brain health care. It also called attention to the need to broaden Euro-Western research ethics for health research with Indigenous populations (59,60). Indigenous peoples’ perspectives on the brain and mind are exceptionally diverse, as is the body of research that has sought to understand these perspectives. Here we explored trends and themes within this literature to inform neuroscience initiatives and contribute towards the realization of a truly collaborative neuroscience. 3.3 Methods 3.3.1 Research Question The unifying research question for this work is: What are the defining themes of academic research about global Indigenous populations’ perspectives on the mind and brain? 25 We adapted the Joanna Briggs Institute (JBI) scoping review methodology described by Peters et al. to answer this central question (61). The methodological strategy is ideally suited to address broad research questions that are expected to have multiple and diverse contributing factors. 3.3.2 Statement of Positionality and Community Engagement This scoping review informs two larger projects in which the authors are engaged: a community-based project examining the meaning of brain wellness in an Indigenous health context, and the Indigenous initiatives of the Canadian Brain Research Strategy. Three of the authors (LH, VM & JI) identify as settlers; one author (CJM) is a member of the Musqueam First Nation. 3.3.3 Definitions We identified Indigenous peoples according to criteria provided by the United Nations: “an Indigenous person self-identifies as Indigenous; has historical continuity with pre-colonial society; has a strong link to territory and natural resources; has a distinct social, economic, or political system; has a distinct language, culture, and/or belief system; forms a non-dominant societal group; and/or resolves to maintain and reproduce their ancestral environments and systems as distinctive peoples and societies.” (41 pp.2-3) 3.3.4 Search Strategy As per JBI protocol, we confirmed that there were no previous or ongoing registered literature review protocols on our topic by searching the PROSPERO International Prospective Register of Systematic Reviews and the JBI Register for Systematic Reviews. We therefore proceeded to 26 identify relevant terms, subject headings, and databases for the search strategy of this study by reviewing the literature from a range of academic databases and consulting with the university health reference librarian. We focused on terms pertaining to the brain, mind and neuro to explore how they are used in the literature about Indigenous peoples (Appendix B). We attended carefully to the challenges of developing a comprehensive literature search strategy about Indigenous populations, as described in a parallel study (32). The four databases we chose gave us access to contemporary and historical records about health and Indigenous populations: the Cumulative Index to Nursing and Allied Health Literature (CINAHL Complete: EBSCO, 1982-present), MEDLINE (Ovid, 1982-present), the Native Health Database (1652-present), and Informit Indigenous Collections (1977 to present). We conducted the search between June 17-30, 2020. Citations were uploaded to Covidence (62) that automatically removes duplicate articles. Articles were screened for inclusion by at least two independent reviewers in two phases: titles and abstracts and then full-texts. All co-authors participated in the process of collecting data pertaining to the research question from the final set of included articles using an iteratively refined data extraction form (Appendix C). Co-authors LH and JI undertook final decision-making where needed. We included academic journal articles about the opinions, beliefs, views and attitudes of any Indigenous individual or community about the brain, mind, or any brain or mind condition, disorder, or disease. For feasibility, we only reviewed articles with titles and abstracts written in English. For full-texts not written in English, we recruited translators fluent in those languages. Articles were excluded if they were out of scope, were not journal articles, or were written in a language for which translation was not available. 27 3.3.5 Data Extraction and Content Analysis We collected data on years of publication, article type (research or review), methods, countries of affiliation of corresponding authors, names and countries of Indigenous communities, defining characteristics of the research participants (e.g., age, community roles), foci of the articles, and ethics content. We used conventional terminology from Western neurology and psychiatry (63) to identify brain conditions described in the papers and preserved information about Indigenous conditions verbatim to prevent misinterpretation. To identify discourse pertaining to ethics, broadly defined, we searched for a priori content relevant to research, biomedical or clinical ethics, public health, and Indigenous ethics, and identified other emergent ethics content. We used a rich coding strategy to allow content to be assigned to more than one category (e.g., public health and policy; research ethics) as appropriate. 3.4 Results 3.4.1 Overarching Features of the Articles A total of 66 articles met the final inclusion criteria (Figure 3.1). Table 3.1 summarizes the overarching features of the final data set. The majority were written in English. Two thirds were research (primary or secondary) and one third were reviews (literature reviews and commentaries). The earliest date of publication was 1963, and there was a large increase in the number of publications around the turn of the millennium (Figure 3.2). Two thirds of the corresponding authors were affiliated primarily with institutions in the USA, Canada, Australia or New Zealand, and of the remaining authors five were in Latin 28 American countries, five in Europe, and two in Asia. Corresponding authors in Canada and the USA were unique in that while most authors wrote primarily about local communities, authors from these two countries collectively wrote about Indigenous peoples living in twelve additional nations and regions around the world, primarily spanning South America and Mexico. For authors in the USA this was primarily through research; authors in Canada only discussed these countries in review articles. 29 Figure 3.1: PRISMA flow diagram showing the process of inclusion of articles for the review (64). 30 Figure 3.2. Years of publication of all articles (n=66), separated by research and review. 3.4.2 Methods and Participants The majority (80%) of research studies involved some form of consultation with Indigenous peoples, most commonly as interviews or focus groups. A smaller portion of research articles used observational methods that involved field work in Indigenous communities (13%), two involved analyses of artwork, and one article examined cross-language differences in medical terminology. More than half (61%) of research studies were about adult populations. The next largest participant groups were healers (28%) and children and youth (22%). The majority (70%) of the review articles were commentaries or narratives, and there were three systematic reviews and three literature reviews. 31 Types of articles 46 research, 20 review Languages 59 English, 6 Spanish, 1 French Years of publication range 1963-2020 # Indigenous groups total 60 Indigenous community countries and regions Country Articles (n) USA 17 Australia 14 Canada 13 Mexico 7 New Zealand 7 Peru 4 Belize, Brazil, Guatemala, Amazon rainforest 3 about each Bolivia, Chile, Fiji 2 about each Africa, Argentina, Israel, Madagascar, Mali, Pacific Islands, Pakistan, Kingdom of Tonga 1 about each Corresponding authors’ countries of affiliation USA 22 Australia 14 Canada 12 New Zealand 6 Brazil 3 England 2 France, Israel, Italy, Malaysia, Mexico, Peru, Spain 1 from each Methods Consultations 37 Commentary or narrative 14 Observational 8 Case studies, Literature reviews, Survey, Systematic reviews 3 of each Analysis of artwork 2 Cross-language analysis 1 Participant characteristics (research articles) Adults 28 Healers 13 Children and youth 10 Elders 5 Chiefs, Grandmothers 1 about each Table 3.1: Overarching features of the dataset. 3.4.3 Indigenous Communities We identified 66 highly diverse Indigenous groups in this body of research (Table 3.2). Most were in North America (48%), while one third (30%) were in Oceania and a fifth (19%) in South America (Figure 3.3). Indigenous communities in Australia and the USA were a dominant focus, 32 followed by Māori people in New Zealand and First Nations in Canada. There were only three articles about communities of each Asia and Africa, and no articles about Indigenous communities in Europe (e.g., Sámi of northern Europe, Inuit of Greenland). The way that Indigenous communities were identified in the articles differed across continents and limited the number of distinct communities we could identify. Authors writing about Australia and South America mainly used broad group names (e.g., Indigenous peoples of Peru, Aboriginal people in Western Australia), while communities in North America were frequently identified by their specific nations (e.g., Cree, Penobscot). 33 Articles (n) North America 54 Native American/American Indian (unspecified)(65–75) 11 First Nations or Aboriginal (unspecified)(74,76–80) 6 Métis(77,80–82) 4 Cree(81,83,84) 3 Inuit(77,80,82,85) 4 Alaska Native(67,70) 2 Ojibway(81,83) 2 Tzeltal Maya(86,87) 2 Aaniiih Gros Ventres,(88) Anishnaabek people of Wiikwemkoong Unceded Territory,(84) Arikara-Hidatsa,(83) Aztec,(89) Caribe,(83) Dakota,(74) Diné (Navajo),(90) Eastern Cherokee,(83) Haida,(83) Huichol (Wixarika),(91) Lakota,(83) Mayas in the Altos de Chiapas,(92) Native Hawaiian,(93) Navajo,(94) Penobscot,(83) Pueblo of Santa Clara,(66) Salteaux,(82) Seneca,(83) Tahltan First Nation,(60) Taino,(83) Tohono O’odham,(83) White Mountain Apache,(83) and Yaqui peoples(83) 1 about each Oceania 33 Aboriginal peoples of Australia (unspecified)(68,95–104) 11 Māori(105–111) 7 Torres Strait Islanders(68,78,95–97,103,104) 7 iTaukei Fijians from the Yasawa Islands(112,113) 2 Pacific Islanders(93,105) 2 Chamorro,(114) Kokatha,(115) Tongan,(105) and Yolngu peoples (Golumala Clan)(116) 1 about each South America 21 Indigenous groups in South America (unspecified)(92,117,118) 3 Maya(83,119,120) 3 Kámayura(86,121) 2 Mestizo(117,122) 2 Uru-Chipaya(86,121) 2 Chazutino,(122) Cocama,(122) Inca,(92) Moro-Ayoreo,(92) Q’eqchi’ Maya,(123) Quechua,(124) Quecha-Lamista(92), Selk’nam,(86) and Yámanas peoples(86) 1 about each Africa 3 An Indigenous community in Africa (unspecified),(74) Dogon,(125) and Sakalava peoples (in Ambanja, Madagascar)(126) 1 about each Asia 2 Israeli-Yemenite(127) and Kalasha peoples(128) 1 about each Table 3.2: Indigenous groups in the articles organized by frequency. 34 Figure 3.3: Number of total articles (n=66) about Indigenous communities in countries around the world. 3.4.4 Foci of the Articles Based on the content of the articles, we clustered main foci about brain conditions into four major categories: mental health (a focus of 42% of all articles), aging and dementia (20%), five subcategories within the category of non-aging related conditions together comprising 18% of the total (traumatic brain injury, strokes and acquired communication disorders, headaches, movement disorders, epilepsy), and neurodevelopmental disorders (3%). Mental illness was by far the greatest focus in the articles returned, variously describing this condition, for example, as “thinking too much”, “pain in the head”, “heat in the head”, “sadness of the soul”, “spoiled mind”, “crazy”, “anxiety”, “sick” or “lost mind”, “spirit possession” and “madness”. Addiction, trauma, psychotic experiences, schizophrenia, and emotions and psychopathology were also mentioned. In counterpart to mental illness, mental 35 health was also described in terms of “wellness” and “well-being.” Mental health training using psychotherapy, cognitive behavioural therapy, neuropsychiatry, shamanic healing and Indigenous psychology were the interventions reported in the dataset. Dementia was another focus of the articles. The terms aging, cognitive decline, and Alzheimer’s were used interchangeably to describe this condition. This theme was only a major focus in articles about Indigenous communities in Australia, Canada and the USA, while mental health was a focus of articles about a much broader range of countries. In the category of non-aging related brain conditions, articles pertaining to brain injury and concussion were most frequent. We noted two articles on headaches and two on epilepsy in the dataset, as well as one on a movement disorder (Machado Joseph Disease). Where articles focused on a mixture of neurologic and mental health conditions, aging, headaches, psychosis, and neuromuscular symptoms were the foci. Three articles focused on physical pain; one related to cancer. Of the two that focused on neurodevelopmental disorders, one focused on autism and the other on fetal alcohol spectrum disorder. The fifth category of studies – cross-cultural analyses aimed at understanding differences in how Indigenous peoples think and reason – accounted for 5% of articles. Two of the articles were published by a single research team in the same year and pertained to moral judgement and perceptions about the mind among iTaukei Fijians (112,113). The third was about the development of a paradigm to describe the “Indigenous Mind” in an Australian context: 36 “I see Indigenous Mind as an attempt to de-colonise the thought processes of Indigenous Australians and retrain them to go back to our cultural and spiritual base. To see, believe and interpret the world and everything in it through our cultural mind, our pina kuru. It is an attempt to stop the poison of mental colonialism (white way of thinking) contaminating our culture, our spirituality our consciousness, our psyche.” (115 p.37) In a specific analysis of the articles written by authors affiliated with institutions in Canada, where our research team is located, there was a twofold focus on dementia and aging over the sample: this theme accounted for almost half (42%) of all articles from Canada. Mental health was an equally large focus in these articles over the total sample (42%). Two out of the total four articles about brain injury were from research teams in Canada and investigated perceptions and knowledge among several First Nations communities in Ontario. 3.4.5 Ethics Content We derived seven categories of ethics content from the two thirds of articles that contained it: public policy/public health (discussed in 39% of all articles), importance of cultural identity and heterogeneity of multicultural groups (21%); research ethics (8%); access to services and resource allocation (6%); the impacts of contact with White civilizations and colonization on health and culture (3%); and locus of caregiving and decision-making (2%). Public health and policy dominated the papers when observed through the ethics lens. These quotes capture the essence of the overwhelming theme: 37 “Western cultures […] have historically denied indigenous peoples and people with disabilities their human rights to self-determination, disabling both groups.” (94 p.583) “Indigenous community leadership and participation is a key factor to Indigenous health program success. Community is extremely important to First Nations peoples. Therefore, health interventions with First Nations must focus on collaboration with community members and be guided by culture.” (76 p.209) A central theme of cultural awareness and diversity was also a significant focus. Papers discussed maintaining uniqueness and cultural identity, preservation of traditional knowledge while appreciating collective values, two-eyed seeing in the context, for example of bioculturalism (66), cultural training of health care providers, and appreciation of cultural views of mind: “Whether we looked at how concepts of minds are structured or how these structures are used to predict other variables, cultural differences mattered. Much more cross-cultural work is needed before we can confidently make any universal claims about how humans conceive of minds, and more attention needs to be paid to specific historical differences in cultural context.” (113 pp.24-25) Of the few papers with research ethics content, researcher bias and positionality, mindset, self-reflection, and community engagement were the themes. Rituals of gift- and tobacco-giving were discussed once. The irrelevance of the process of Western approaches to consent in another: 38 “These elders found the usual research format of consent forms, confidentiality, and data collection highly amusing, and as one said, he ‘would never participate in such nonsense.’ Nevertheless, they humored me by signing consent for participation in an ethics committee–approved interview study. They considered themselves to be my teachers and were satisfied when I could repeat back what they had said correctly.” (83 p.21) 3.5 Discussion Neuroscience initiatives must embrace the perspectives of the diverse communities they strive to benefit to truly meet the goal of global collaboration. In this scoping review of 66 academic articles about global Indigenous peoples’ perspectives on the brain and mind we located a heterogenous body of literature to which neuroscientists can refer to incorporate these perspectives into their work. Several key features of this literature distinguish it from the biomedical models of disease, healing, and treatment that dominate neuroscience research and clinical practice. The first reference feature of this work is the holistic view on brain health and significant focus on mental wellness. While the foci of the articles spanned major neurologic, mental health and other conditions familiar to biomedical communities, notions of the mind, wellness/well-being, spirituality and relationships were woven throughout. Concepts of wellness often included considerations of family, community and society more broadly, as was described by Watts, who explored substance dependency and recovery: 39 “The Healing Forest program starts with the premise that an ailing individual tree, once healed and returned to a forest where the soil remains diseased, will become diseased again itself. A forest cannot heal unless harmful elements present in its soil are removed and replaced with healthy elements.” (66 p.40) Spiritual elements of well-being were also prevalent in descriptions of the etiology, classification and treatment of various disturbances and illnesses: “Spirituality is acknowledged by many Indigenous people to be the strengthening foundation of all of the domains of [social and emotional wellbeing], of a ‘deep wellbeing’ (Grieves, 2006, p. 52) and the source of healing.” (95 p.321) A second defining feature of this literature is the unique ethics themes. Incorporating considerations including culture, colonization, and access are crucial to the collaborative way forward for neuroscience that we are envisioning and were described in a significant portion of the literature. Less prevalent in the literature we found, though of critical importance, was Indigenous research ethics. For example, many articles lacked statements by the authors that indicated their positionality and relationship relative to the Indigenous communities they studied. As described through the principles of OCAP® (24) that are regarded as the minimum standard for research with First Nations peoples in Canada together with chapter 9 of the Tri-Council Policy Statement (21), ownership, control, access, and possession are essential. As such, impactful and respectful research with Indigenous populations must involve deep, meaningful collaboration: 40 “[…] the larger project to recover (historically subjugated) Indigenous knowledges will not succeed in influencing scholars and professionals in psychology absent processes of robust community engagement.” (88 p.183) A promising feature of the body of literature we studied was the increasing publication trend over time that may be taken as proxy measure of a growing interest and motivation within academia to understand and incorporate Indigenous perspectives. The increase started close to the millennium and may be associated with the global Indigenous rights movement catalyzed by the United Nations in the 1980s and recognized in the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) in 2007 (15). 3.5.1 Limitations The literature we located was mainly about Indigenous communities in the Americas and Oceania, which limits applicability to populations in Africa and Asia. There were few corresponding authors outside of Canada, USA, Australia, and New Zealand. This limitation may reflect a need for more scholarship led by authors and institutions in under resourced countries, the constraints of the methods and global reach of the databases searched (129), the exclusion of non-English language titles and abstracts, or a combination of these phenomena. Our decision to focus on Indigenous groups globally was based on the articulation of their shared rights in UNDRIP, but the importance of the specificity and distinctiveness of individual communities cannot be overemphasized. Similarly, there is diversity within Euro-western biomedical understandings of the brain. It is not our intention to fabricate a binary 41 distinction per se between these two knowledge systems. The scoping review methodology focuses on commonalities and generalizations; the ability to provide in depth analyses of content is necessarily limited. Finally, the scope of the literature was limited by the choice of general search terms in the neurological sciences. Other research about specific brain diseases and mental health conditions can be located using different subject headings and keywords. 3.5.2 Overall Conclusions and Recommendations Understanding Indigenous peoples’ perspectives on brain health can contribute to wellness targets and to human rights while also expanding the scope and reach of neuroscience. These efforts must involve meaningful collaboration with Indigenous communities and hold ethics at the centre. This scoping review reveals and elaborates on Indigenous ways of knowing about health and how they can differ from Euro-western biomedical understandings. We bring that knowledge here to focus on the global neurological sciences community through specific examples from the Indigenous academic literature. In our dataset, key reference features were the concepts of wellness and well-being, holism, the mind, spirituality, and relationality, as well as the unique ethics topics that pertain to Indigenous populations. Other important features were the substantial foci on mental health, aging and dementia, and an increase in publications starting at the turn of the millennium. We identified few articles from corresponding authors affiliated outside of Canada, USA, Australia, and New Zealand. Corresponding authors in Canada and the USA collectively wrote about communities across 12 other countries and regions, with a focus on Mexico and South 42 America. Because Indigenous groups residing in Canada and the USA were identified with a higher level of specificity than those in other countries, the dataset about perspectives on the brain and mind in this part of the world is more detailed than others. An important focus for future work is the specific link between violence against Indigenous peoples (e.g., continued colonialism, violation of human rights, racism and other forms of discrimination) and brain wellness. As authors, we understand the primacy of this connection as a key motivation for all our work with Indigenous communities, and there is a well-developed body of literature on the link between these factors and Indigenous peoples’ health in general (e.g., 12,129). While an analysis of these connections is out of scope for the present review, a paper by Dudgeon et al., that explores a decolonizing approach to psychology that encompasses how “the specific impact of colonisation has resulted in enduring forms of trauma which have harmed the mental and emotional health of Indigenous people in particular ways” (96 p.319) and, more recently by Perreault et al. (28), are particularly relevant. This work supports the meaningful incorporation of Indigenous knowledges into multinational neuroscience initiatives and the neurological sciences more broadly. Based on the findings here, mental wellness and brain health for aging Indigenous populations may be two priority areas for future collaborative work. It is one step further in the continued movement toward a more inclusive and expansive approach to understanding and approaching the causes, prevention and treatment of illnesses affecting the brain and mind. 43 3.6 Afterword This scoping review contributed to understanding Indigenous peoples’ perspectives on the brain and mind and provided the necessary background for the working group initiative. The published article was shared at the first meeting of the Indigenous Knowledge Holders Group of the CBRS (45) and on the CBRS website (131). I presented the work as a poster at the 2021 International Neuroethics Society Annual Meeting where it was selected as a Top Abstract for inclusion in an issue of AJOB Neuroscience (132). I also incorporated results into poster and oral presentations at five other international conferences. 44 Chapter 4: Establishing an Indigenous Brain Wellness and Mental Health Working Group 4.1 Introduction “In many projects the process is far more important than the outcome. Processes are expected to be respectful, to enable people, to heal and to educate. They are expected to lead one small step further towards self-determination.” (133 pp.218-219) In 2021 the Indigenous Knowledge Holders Group of the CBRS facilitated a workshop that identified priority areas for action in brain research including creating new partnerships and stronger connections with Indigenous peoples and integrating diverse Indigenous knowledges into research and education (28). With the increasing awareness over recent decades of the historical and ongoing violence that Indigenous peoples face in Canada, the neurological sciences community is well-positioned to understand the importance of the priorities set out by the CBRS and to mobilize to achieve them. Pursuing these priority areas requires a careful focus on methods and approaches to be appropriate, effective, ethical and culturally safe. The purpose of this stage of the project was to catalyze conversations and partnerships for approaching the brain and mind in an Indigenous health context in Canada. It also advanced ethical methods for neuroscience and neuroethics partnerships with Indigenous communities. The academic team brought learnings from the global literature review presented in chapter 3 into the local context to help me to establish and convene a 20-member Indigenous brain wellness and mental health working group. This group collectively explored answers to two organizing questions: What is the meaning of brain wellness in an Indigenous health context? 45 and, Does it include or is it included in mental health? Through this process I also aimed to generate responsive actions that could support self-determination and wellness. 4.2 Methods 4.2.1 Approach and Frameworks The initiating team for the project comprised myself, a public health graduate student and settler, Dr. Malcolm King, a health researcher and member of the Mississaugas of the Credit First Nation, and Dr. Judy Illes, a Canadian neuroethicist of European background. We approached the project as a working group, rather than a research study involving participants, as the focus was on preliminary collaborative inquiry to generate research questions rather than a project designed to answer one or more research questions per se. 4.2.1.1 Ethical Considerations The project did not meet eligibility criteria for ethics board review, consistent with other working groups and workshops that have engaged experts in dialogue to generate questions for future research or recommendations from existing data (e.g., 49,134–136). While research is defined in chapter 2 of the TCPS 2 as “an undertaking intended to extend knowledge through a disciplined inquiry and/or systematic investigation” (21) and this project like all neuroethics work, by definition, extends knowledge, it was neither a disciplined inquiry nor a systematic investigation. Rather, the intention by the team was to engage diverse experts from our networks in a collective for partnership, conversation, and action to consider meanings of brain and mind and associated priorities. Even though research was not the focus here, we thoughtfully considered principles 46 from chapter 9 in TCPS 2, OCAP® (24), and the CIHR Guidelines for Health Research Involving Aboriginal People (23) when making shared decisions about audio recording the meetings and protecting privacy and confidentiality. By incorporating these ethics frameworks and methods into our approach, we were able to assure the cultural appropriateness and sensitivity of the undertaking, and bring principles from an Indigenous research paradigm together with Western community engagement practices using the concepts of Two-Eyed Seeing and the ethical space of engagement. Indigenous leadership and the involvement of Elders further led the creation of a safe space and the incorporation of Indigenous ethics. All members of the group were committed to continuous learning and unlearning, centering Indigenous and community voices, and practicing cultural humility and awareness. 4.2.1.2 Indigenous Research Paradigm In the book Research is Ceremony, Opaskwayak Cree scholar Shawn Wilson defines Indigenous research as “research done by or for Indigenous peoples” with Indigenous leadership (2 p.16). While the paradigm has been developed for millennia by Indigenous communities and scholars, it has only recently been accepted within mainstream academia (2,138). Centering an Indigenous research paradigm involves more than including Indigenous methodologies or engaging with Indigenous advisory groups, as these can fail to challenge epistemic privilege when they are still “embedded in a normative, thus invisible, Western intellectual tradition,” (18 p.62). Australian settler scholar Michael Christie (138) has described Indigenous research as having the potential to “fulfill the criteria for both Indigenous knowledge production and academic research,” (p.80) 47 by allowing researchers to work at the intersection of Indigenous and Western academic knowledge practices (Figure 4.1). Figure 4.1: Diagram representing Indigenous research as the intersection of Indigenous and Western academic knowledge practices. Figure from Christie, 2006, licensed under CC BY 4.0: https://creativecommons.org/licenses/by/4.0/. Kovach has further asserted: “[t]he influence of Indigenous research that is relational at its core is a potential to transform a normative homogeneity and the nature of the academy itself,” (139). Accordingly, with my supervisors, I determined that incorporating aspects of an Indigenous paradigm into the working group project would ethically and methodologically benefit the inquiry. In Indigenous Methodologies, Kovach (18) identifies four core, interdependent foundations of an Indigenous conceptual framework: Indigenous epistemology, experiencing the self in relationship, Indigenous community, and Indigenous ethics. Indigenous epistemologies generally emphasize holistic, contextualized belief systems, and value interdependence, 48 collectivism, and relationality (18). Ideas develop through relationships such that “[a]n idea cannot be taken out of this relational context and still maintain its shape,” (2 p.8). Experiencing the self in relationship involves the researcher exploring and communicating their positionality in relation to the project, to Indigeneity, and to the land (2). From this subjective orientation, the researcher reflects on and documents how the research process changes them and the others involved. The foundation of Indigenous community entails Indigenous leadership, community engagement, and relational accountability (2). As articulated by Anishinaabe scholar Kathy Abolson, “our teachers are not really in the academy. Our teachers are in the community,” (18 p.117). Researchers cultivate reciprocal and respectful relationships by asking themselves questions such as: “Has my research hindered or helped to engender a trusting relationship with the Indigenous peoples involved? Does the research assist the community? Do the Indigenous research participants and stakeholders feel respected?” (18 p.114). The fourth foundation, Indigenous ethics, is “more expansive than the liability focus that marks university ethics standards” as it “starts with respecting Indigenous peoples, places and knowledges,” (18 p.98). Kovach calls on researchers “to tend to the process in a good way, so that no matter the outcome you can sleep at night because you did right by the process,” (18 p.70). Collaborative data analysis is encouraged and even necessary, as the knowledge generated exists in relationships and is not owned by the researcher (2). 49 4.2.1.3 Patient-Oriented Research and Pragmatic Neuroethics The Western academic frameworks of patient-oriented research and pragmatic neuroethics guided the incorporation of community engagement practices into the project design brought by the expertise of team members King and Illes, respectively. Patient-oriented research engages people with diverse and intersectional lived and living experiences as partners, such that the research team is a tripartite of patients, healthcare providers, and academic researchers (140,141). Participatory action, a common element of patient-oriented research, considers that research may not be worthwhile or even ethical if it does not contribute to the betterment of the lives of the research participants (2). Neuroethics, in its examination of the ethical, legal, and social implications of neuroscience research and practice, and has a strong tradition of public engagement (142). A pragmatic approach to neuroethics embraces flexibility and diversity in perspectives, philosophies and methods, and focuses on practical, societal and legally relevant issues (30,143). 4.2.1.4 Ethical Space and Two-Eyed Seeing Sturgeon Lake First Nation scholar Willie Ermine’s concept of an ethical space of engagement (144) and Mi’kmaq Elder Albert Marshall’s concept of Two-Eyed Seeing (26) supported our bringing together of Indigenous and Western frameworks to create a space for cross-cultural discourse and problem-solving. The term ethical space was originally coined by British scholar Roger Pool as an abstract space where an ethical encounter occurs between parties with differing intentions (144). Ermine borrowed and expanded on this for Indigenous research ethics, conceptualizing an ethical space as a “venue within which to articulate the possibilities and 50 challenges of bringing together different ways of coming to knowledge and applying this theory to the practice of research,” (144 p.16). Two-Eyed Seeing, as introduced in chapter 1, similarly considers this bringing together of knowledges and “using both these eyes together, for the benefit of all,” (26 p.337). Sasakamoose et al. (145) describe how using the two concepts together can improve Indigenous health and well-being: “Within the middle ground [ethical space], the two-eyed seeing approach honours the spirits of place and the knowledge of the participants, and it recognizes the colonial power relations and collective power differences. Two-eyed seeing allows for making conscious decisions to activate whichever lens is more appropriate to use or a harmonization of both. This re-centering debases enshrined modes of colonial power and governance mechanisms.” (p.8) 4.2.2 Design The working group inquiry consisted of four main stages: preparing, convening, data contemplation, and mobilizing. The project design was responsive to the COVID-19 pandemic. A primary challenge we encountered was that consulting with Indigenous Elders or Knowledge Keepers by videoconference was not an established practice before the pandemic (146). Further, in-person interactions are seen as foundational to transparent research practices with Indigenous peoples in many contexts (147). The project design incorporated adaptations to cultural protocols that Indigenous communities developed during the pandemic (146), and paired flexibility and adaptability with a commitment to recover lost in-person time when it is safe to do so again. 51 4.2.2.1 Preparing the Working Group The leadership group for the project was completed by inviting Dr. Nel Wieman, a public health leader, psychiatrist and member of the Little Grand Rapids First Nation; Sharon Jinkerson-Brass, a Key First Nation Elder; and Bryce Mercredi, a Métis Elder. The leadership group met before the first meeting to finalize the approach and then after the last meeting to discuss the project outputs. As the hosts of the three meetings, we held responsibilities for facilitation, technical aspects, safety, and wellness. We invited the remaining group members from our immediate and extended networks, an approach that Kovach has characterised as “akin to a relational sampling,” (2 p.182). We balanced four categories of stakeholders: healthcare providers; health leaders; academic researchers; and community members, including community support workers and people with lived and living experiences. Within each category we invited people who brought interest and experience to the topic of the project, and we strived to achieve a group composition that represented a diversity of Indigenous cultures, genders, ages, and geographic regions within Canada. In preparation for the first meeting, I collected a short biography from each person and created a Bio Book that I distributed it to the group to start to facilitate relationship building (included in Appendix D). Sixteen of the twenty total working group members self-identified as Indigenous. Fifteen members brought specific professional or lived experiences to the areas of brain wellness or mental health; the two most common areas were mental health and substance use disorders, and others brought knowledge about dementia and cognition, fetal alcohol spectrum disorder (FASD), psychiatric disorders, neurologic disorders, and brain injuries. The 52 five remaining members brought knowledge about Indigenous health and wellness generally, Indigenous community engagement in research and policy, and community support work with youth and adults. Sixteen resided in British Columbia (thirteen in the lower mainland, two in northern British Columbia, one on Vancouver Island), two in Ontario, and one in each Alberta and Labrador. We offered members honoraria and traditional Indigenous medicines from their choice of tobacco, sage, cedar, or sweetgrass. Most chose tobacco, which I wrapped in broad cloth in enough quantity to fill a pipe (pictured in Figure 4.2). I mailed the medicines in packages to each member that also included a letter, a copy of the Bio Book, and a smooth stone, as suggested by Elder Sharon (pictured in Figure 4.3). In the letters I extended my personal gratitude, reiterated key information about the project, and shared my intentions to take notes and audio record the meetings if everyone in the group agreed. The letters also included a note from the Elders that expressed our intentions to value each group member and to offer reciprocity for their knowledge through the honoraria and medicines. They asked members to come to the sharing circles with clear and open minds and described how the stones could be used for grounding. 53 Figure 4.2: Tobacco bundled in broadcloth for gifting to working group members (Photo by Louise Harding, 2021). 54 Figure 4.3: Letters, stones, and mailing labels for packages for working group members (Photo by Louise Harding, 2021). 4.2.2.2 Convening the Working Group Our group met three times over a period of four weeks, progressing from building relationships and hearing each person’s perspectives on the meanings of brain wellness and mental health in an Indigenous health context, to discussing areas for action, change and collaboration. Each meeting started with my introduction of the theme and was followed by a sharing circle led by Elders Sharon Jinkerson-Brass and Bryce Mercredi (Table 4.1). The sharing circle or talking circle is a sacred Indigenous practice that involves ceremony (148,149). Seated in a circle, each 55 person is encouraged to speak and listen from the heart and has an equal, uninterrupted opportunity to comment on the organizing theme or question (2,149). Circles can be a place for healing and community building as they “giv[e] everyone a sense of worthiness and being valued and listened to, and respected,” (149 p.365). To accommodate the virtual format, Elder Sharon guided us to follow the direction of the heart by identifying the person to the left on our screen or in the circle to speak next. One leadership group member kept track of timing and of who had not spoken yet. Meeting Theme Format Length 1: Grounding Who are we as a group and what is the topic? Virtual sharing circle 1.5 hours 2: Direction Where do we want to go as a working group? Virtual presentations followed by a sharing circle 1.5 hours 3: Action How will we get there? In-person lunch followed by a hybrid roundtable discussion and a hybrid sharing circle 3.5 hours Table 4.1: Summary of the meeting themes and formats. When opening the first meeting I asked that all personal information disclosed in the sharing circles be kept confidential and that each person only shares what they are comfortable with others hearing. I received permission from the group to audio record the meetings for the purposes of group record keeping and preparing a summary and re-stated my intention to consult with each about the summary before including it in my thesis. I shared a list of mental health support resources with the group, and the Elders re-iterated that an important part of their role is to provide emotional support and welcomed members to reach out. 56 The second meeting started with presentations about healing approaches for brain wellness and mental health from each Western biomedical and Indigenous perspectives to inform the group’s discussions. We invited Dr. Nir Lipsman, a functional neurosurgeon at Sunnybrook Health Centre, to speak about neurosurgical interventions for brain wellness, and Elders Bryce and Sharon to speak on Indigenous healing approaches. The third meeting was held in a meeting room in the Djavad Mowafaghian Centre for Brain Health on the UBC Vancouver campus, where we made efforts to establish a sense of communal hospitality by choosing a room with large windows and natural light, and serving a hot lunch prepared a First Nations owned catering company. We used videoconferencing to integrate the members who joined virtually. 4.2.2.3 Data Reflection and Presentation Approach Following the last meeting I set out to summarize what was discussed, including the priority areas, ideas for action, and emergent research questions. I used reflexive reflection, “a decolonizing method of contemplating data in an Indigenous research context” (p. 213) that was recently developed by LaVallie & Sasakamoose (137). In contrast to Western data analytic methods, this approach promotes reflection on and contemplation of “the perceptions of teachings that develop in the researcher's consciousness during research inquiry,” (p.218). In this way, reflexive reflection is responsive to the “tensions of data reduction and representing decontextualized thoughts” in the context of collaborative work with Indigenous peoples (p.211). By emphasizing subjectivity, it can promote the decolonization of Western science. 57 I prepared for the reflexive reflection process with a contemplative mindset and comfortable physical space. I reviewed each meeting transcript while listening to the recordings and made notes and highlights on areas that elicited emotional reactions or contained culturally relevant language, symbols or metaphors. In the process I considered my own reflexivity, positionality, intersectionality, lived experiences and biases, as well as the ways that I and others experienced change from the inquiry in our behaviours, processes, beliefs, and prejudices. I also incorporated Wilson’s guidance into my reflection process: “My role is not to draw conclusions for another or to make an argument. My role, based upon the guidelines of relationality and relational accountability, is to share information or to make connections with ideas.” (2 p.133) I shared the summary with the leadership group to collaborate on interpretation and enhance cultural sensitivity, accuracy, authenticity, and credibility (2,23). Next, I sent it to each member to ask whether they were comfortable with how I represented their words and ideas and offered to make revisions or deletions. I sought permission to use each person’s full name and to include their biography in the Bio Book of my thesis (Appendix D). This process of returning to the working group members also facilitated further development of the ideas that emerged during the meetings. 4.2.2.4 Mobilizing To prepare the academic team with additional personnel support to pursue action after the three meetings, a part-time research assistant was hired who also participated in the working group as 58 a member. Mobilizing and honouring the knowledge and partnerships that I have developed with the working group members is a long-term and ongoing process, and I report on the actions that our group has taken to date in the Results section. 4.2.3 Summary of the Method In summary, the approach to establishing and convening the Indigenous brain wellness and mental health working group centered Indigenous epistemologies, ethics, and communities, and emphasized experiencing the self in relationship. The working group approach supported the focus of the project on relationship building, collective action, and collaborative inquiry. The incorporation of Western community engagement methods was guided by the concepts of Two-Eyed Seeing and the ethical space for engagement. It facilitated the bridging of Indigenous and Western ways of knowing about the brain and mind. 59 4.3 Results 4.3.1 Reflective Summary Table 2 provides a summary of the context and the key learnings and priority areas that I developed through reflexive reflection. Meeting Theme # members participating Key learnings and priority areas 1: Grounding Who are we as a group and what is the topic? 18 • Many members of the diverse and multidisciplinary group shared an understanding that in Indigenous health contexts, brain wellness and mental health are best approached holistically and in connection to the wide range of factors that can impact wellness. • Applying the Mik’maq concept of Two-Eyed Seeing provides an opportunity to integrate these holistic conceptualizations of wellness with Western medical knowledge. 2: Direction Where do we want to go as a working group? 20 • Supporting Indigenous peoples’ brain wellness and mental health should be grounded in the contexts of colonization and racism and focus on healing and self-determination. • It is imperative that Western medical professionals learn about and appreciate the importance of Indigenous healing approaches, and particularly the ceremonial and spiritual aspects. 3: Action How will we get there? 16 (11 in-person, 5 virtual) • Broad systemic changes are needed to support a Two-Eyed Seeing approach to brain wellness and mental health. • While working towards systemic change, incremental changes can be made within the current system to ease the burden on care providers, better address community needs, and support cultural awareness and humility. Table 4.2: Summary of my main reflections from each meeting. 60 4.3.1.1 Grounding: Who are we as a group and what is the topic? Virtual Sharing Circle In this first meeting, many members of the diverse and multidisciplinary group shared a holistic way of viewing health and wellness that connected to the Medicine Wheel: “And I don’t know how we can talk about brain wellness within the Indigenous context without talking about health generally, and the entire aspects of health.” (Henry G. Harder) “[…] the Medicine Wheel teachings, that’s the mental, spiritual, emotional and physical parts of health. Well those first three, I think, have to be connected to the brain. But is that the way Indigenous people thought before the Europeans arrived? I don’t know. And maybe somebody does know. But even the physical part of health is related to the brain. So, I guess when one is asking the question – is mental health part of brain health? – I would say yes, it would have to be. But there’s every other part of health that’s also part of brain health.” (Malcolm King) The roles of spirituality and culture in Indigenous approaches to brain wellness and mental health were brought to the group by Elder Sharon Jinkerson-Brass in many ways, including by sharing a personal story incorporating teachings from her grandmother about global oneness and the power of culture. Near the end of the story she said: “Without culture, life is not the same dimensionality that you can achieve with culture. And we often talk about culture without saying how powerful an instrument it is to bring us 61 emotional and spiritual oneness in any moment. There’s the opportunity to step into another realm or reality.” (Elder Sharon Jinkerson-Brass) Rae-Anne LeBrun also shared a teaching about the brain in the context of considering Indigenous knowledges about brain wellness: “When we go get a brush down in a ceremonial way (whether it be with cedar, medicines, smudging, fans, etc.), it is said that we do these brush downs because our body holds and stores trauma in different places. So, when we get brushed down, it is to allow spirit to help us let go and take care of those heavy things we are carrying. But initially, it's because our brain puts it there so it's not in all one spot because if you hold everything just in one spot, it's just like how crystals are formed, we become hard, heavy, and even tense because we have too much energy stored there. So, to prevent us from becoming hard and heavy our brain will store in different parts of our body. It is our brain that takes care of that for us. It organizes where it thinks our body can hold these heavy things so later, we can take care of it.” (Rae-Anne LeBrun) As I listened to the breadth of connections that each group member made to brain wellness and mental health, I sketched a conceptualization of what I was hearing, writing the connections that stood out to me in a circle surrounding the Medicine Wheel (Figure 4.2). 62 Figure 4.4: A conceptualization of the connections expressed by working group members between brain wellness, mental health and other aspects of wellness in an Indigenous health context (Graphic by Louise Harding, April 2022). Many group members spoke to the complexity of viewing health in this highly connected way, especially when compared to more linear biomedical thinking: “Yeah, I think it’s way more complex than I think the colonizer’s way of conceptualizing that mental wellness.” (Corrina Chase) Several members located hope and possibility in this complexity: “And it’s, to me, it’s like, the more I think about the intersections, the more complicated I feel like it becomes, but at the same time the more I think that we can see a path forward, you 63 know, that it gets more complicated but it’s bringing out the stuff that is like – okay, well this is complicated, but we’re gonna make it through.” (Sekani Dakelth) Ultimately, bringing together Indigenous and Western healing approaches through the Mi’kmaq concept of Two-Eyed Seeing was an area of opportunity for supporting Indigenous peoples’ brain wellness and mental health within the mainstream systems: “[…] it makes Louise’s project a bit harder, having to think about it on so many different levels. But in order, I think, to achieve – help people achieve – walk in partnership with people in terms of achieving mental wellness, mental health, we have to think about all of those different aspects which can indeed be challenging. “But I do know when I started, when I first finished my psychiatry training, and I went to work on reserve – in a reserve community at Six Nations – that I really felt that my Western-based psychiatry training had only taught me about 50% of what I needed to know to work effectively with the members of the community that I did. And being open to learning and being open to possibilities, like working collaboratively with traditional healers, learning about the traditional medicines and working together with a traditional healer – and healers – that we did at that time, I think we managed to achieve not just what the Western world would call achieving the standard of care, but exceeding the standard of care because we were offering, you know, the very best of two worlds.” (Nel Wieman) 64 “And I think for me, and in my job, you know, understanding how the brain works is such a powerful tool to be able to give to youth that come in to see me. It’s like this hidden knowledge that your brain is actually working how it’s supposed to work when it comes to, like, addiction and trauma, and when you can kind of take that idea of ‘I’m not broken, my brain is just doing something and it’s doing what it’s supposed to do when it’s dealt with certain things in life.’ And I think that that’s kind of almost like a superpower. So, I think it’s really important to understand how it works and then be able to explain it in a way that makes sense. “And then the beauty of Indigenous culture is just looking at everything as whole and seeing us as a whole person, and whether it’s like Medicine Wheel teachings and understanding that – it’s just like what Rae-Anne was saying, it’s about balance and seeing, you know, what places in our life or what places in our Medicine Wheel can use some more love and more attention.” (Roxanne Mierau) 4.3.1.2 Directions: Where do we want to go as a working group? Virtual Sharing Circle The second meeting opened with a presentation by functional neurosurgeon Dr. Nir Lipsman about how advanced neurotechnologies including deep brain stimulation (DBS) and focused ultrasound can dramatically improve the lives of people living with movement disorders such as Parkinson’s disease and pediatric dystonia, as well as epilepsy and mental illness. Following this, the two Elders spoke about Indigenous healing approaches for brain wellness and mental health: 65 “I always like to say: put your mind in neutral and do not think about anything, but just be aware of your surroundings, aware of the sounds of nature, whether it be the waves breaking on the shore, a river or a creek flowing, the water, and just sitting down in the bush and just listening, closing your eyes or looking at the sky and just listening and observing what is around you and being aware of what is around you and just relaxing.” (Bryce Mercredi) Elder Bryce further elaborated on this approach in a subsequent email communication with me: “Our urban Indigenous people do not utilize their sense as our ancestors did. This is why it is important to go out into the wilderness and strive to utilize the senses as our ancestors did. We have five senses, some of us have six, and these senses have become numbed to the sounds of a town, city or any large community and it is important to get away and enjoy nature.” (Bryce Mercedi) Elder Sharon Jinkerson-Brass shared a piece she wrote titled “The Power of the Circle” that centered around a personal story of experiencing healing in circle and described the spiritual aspect of wellness as “this untapped resource of our spirits in healing.” Many members resonated with what the Elders shared and also spoke about Indigenous wellness practices as they considered where we want to go as a working group, including connecting to culture and talking to the Creator through smudging or going to a sweat: “So yeah, the science is good, but I still feel like we need to shift. It’s about connecting with that spirit, and I’ve been hearing that from the different participants here. If we do that in 66 nature, we quiet the mind and authentically create that relationship with ourself and our own spirit. And we can share that spirit with other people.” (Corrina Chase) Corrina Chase further elaborated on this in a subsequent email with me, expressing that “connecting to nature is connecting to spirit.” Two-Eyed Seeing came up again as important for our group’s direction, and many members highlighted the barriers that can present to achieving this in practice. Several voiced that a critical piece for bringing Indigenous and Western approaches together to approach brain wellness and mental health is a grounding in the realities of colonization and racism, including how they have disrupted the transmission of Indigenous knowledges and continue to cause significant inequities in access to care: “How do we bring that conversation to our people? You know, when I look around I see […] that colonization has disrupted a lot of conversation.” (Sekani Dakelth) “[…] for Indigenous people to have the right to healthcare, to an equal standard of health care, to have equal access free of discrimination, bias and racism, to have access to these sort of really specialized forms of treatment is not the reality for us today.” (Nel Wieman) “I think the impacts of colonization can't be ignored. They're pretty central to all of this, I think. And as exciting and amazing as, you know, Western medical advances are, they're from a different worldview. And so they're often looking at this from like a physical, tangible, rational, almost mechanical perspective ̶ and there's so much value in that knowledge base, 67 but it's very different. And so, for example, some of the values that are in many [Indigenous] cultures around raising children, loving children, physical contact, talking, having a child connected to people very early, minimizing their experiences of pain. There are so many values that have been disrupted. And so, you know, what Sekani [Dakelth] said about colonization disrupting that, that for me is the critical piece. “And now we're in this space where Indigenous people are not getting good care. So, the medical issues that they have are not being seen, or if they're being seen they might not be seen clearly because of racism, and they may not get care, and they could be misdiagnosed.” (Namaste Marsden) Namaste Marsden described in a subsequent email communication with me that while there has been acknowledgement that systemic racism against Indigenous peoples exists in the health care system since the release of the In Plain Sight report (10), Indigenous peoples are still being harmed by the system/s and its racism and have been since colonization. Cheyenne Johnson elaborated on this in the context of a case video from the neurosurgery presentation of a young boy living with severe dystonia: “And that stigma of his external presentation really kind of mirrors, I think, the stigma wrapped up in racism and colonialism that Indigenous people face, especially Indigenous people who use substances. Facing that stigma based on this external presentation when people have this deep internal world that is sometimes difficult to access or difficult to manage.” (Cheyenne Johnson) 68 It was clear that the way forward includes a focus on healing and empowerment, and for Western medicine to learn about and appreciate the importance of Indigenous healing practices: “Colonization, as we've heard, is a root cause of ill health of Indigenous people in Canada. We've heard that many ways from the TRC [Truth and Reconciliation Commission]. So given that, then anti-colonization or, you know, measures designed to heal from those effects need to be part of the solution.” (Malcolm King) “So, I think how I'm trying to put together our initial discussion, and then today's discussion on the presentation by the neurosurgeon is, you know, because of colonization, there are some Indigenous people who are still very much disconnected from culture, from ceremony, from traditional healing; and it's not that they're against it, it's just they have no idea of how to access it. Or they feel very shy or hesitant to approach anyone to seek traditional healing. And I think that's why it's, in my mind, in my view, it's really good to have that sort of Two-Eyed Seeing approach where people can access Western medicine and traditional healing, and both at the same time if that's what they choose. That's sort of part of the self-determination pathway.” (Nel Wieman) Further elaborating on this in a conversation within the leadership group after the last meeting, Nel Wieman spoke about the importance of reiterating to Western medicine some of the basic concepts that were discussed by the working group. She explained: 69 “You can’t move on to the next steps if you haven’t got the basics. And I think what the mental health field needs is the basics.” Rae-Anne LeBrun shared a tangible example of how Two-Eyed Seeing can be applied in the surgery preparation process: “A teaching that an Elder shared with me is how we need to be prepared in a spiritual way for surgeries, just as much as we need to be prepared and ready in a physical Western way. Western medicine is great for the surgeries and supporting you through the physical aspect of healing, but we really need to also be connected with our spiritual, mental, and emotional side of us as well. Because if we go into surgery and we are unbalanced and unwell mentally, emotionally, and spiritually, then many things can go wrong. Our spirit can get lost, our fears and worries can take over our bodies where healing is a much more difficult task. “So there's this other part of preparing ourselves for big changes like surgeries, which always, of course goes hand in hand with this teaching on Two-Eyed Seeing and what our needs are. Because both Western and Indigenous ways can give us what we need, and even allow us to take better care of ourselves. But just like the Medicine Wheel, we need to balance all of it.” (Rae-Anne LeBrun) Speaking of her experience leading the Kílala Lelum health centre in Vancouver’s Downtown Eastside where they are enacting “culture as an intervention and medicine,” Leah Walker reflected on the rewards and challenges of implementing this in practice: 70 “[…] it's a vulnerable space to be in here because we're caring for people, you know, that have experienced the deepest impacts of colonization and then ongoing trauma from being unhoused or having less access to resources. And so, they're dealing with multiple layers of wellness and unwellness. You know, it's very complex, and everyone is really different. And the biggest work that we're doing I feel is holding a space of relationship and inviting people to come in and access medical care if they need it.” (Leah Walker) 4.3.1.3 Action: How will we get there? Hybrid round table discussion The conversation in the first part of this meeting where we considered collective actions focused very strongly again on what practicing Two-Eyed Seeing can look like for brain wellness and mental health and the systemic changes that are required to achieve this. Returning to his comments from the first meeting that drew on Medicine Wheel teachings, Malcolm King shared a strong rationale for combining Indigenous and Western healing approaches: “[…] we have all of these advances in brain therapy, and so on, but they’re focused on the physical function of the brain mostly, and also, to a certain extent, some of the mental functions of the brain, but they don’t do anything — or they don’t consider very much — the emotional and spiritual aspects, which are surely all related to the function of the brain. Whereas Indigenous medicines, Indigenous healings do holistically address all of those things. So that alone is a good rationale for having an idea of Two-Eyed Seeing—taking the best of both worlds. The Western world is, you know, really made a lot of advances in some 71 aspects of it, but it hasn’t in other ways. And our healing methods are, well, they’re holistic.” (Malcolm King) Addressing spiritual oneness, Raymond Collinge said: “we’re all praying to the Creator, the same God,” and Elder Sharon Jinkerson-Brass spoke about how harnessing this unity can support well-being: “We talk about mushrooms and trees being connected and having a connection, and I think as human beings we would too if we understood that force better of the dream and the unconscious world.” (Sharon Jinkerson-Brass) Alongside this, Raymond, Sharon and others also acknowledged and expressed gratitude for how Western medicine has helped them and their loved ones, and several members stated that those medical treatments have saved their lives. The challenge of creating systems that can equally integrate Western and Indigenous understandings was conveyed by Nel Wieman as “privileging whose eye?” and was further elaborated on by Sharon: “But I think we need, if we’re really going to talk about Two-Eyed Seeing in a balanced way, then we need to support the structures in some way. And I know people in the past ̶ we've had these kinds of conversations and it hasn't gone anywhere because people are so afraid of colonizing our traditions and our medicines if we do try to introduce some of this thinking, and I agree, I know that it's ̶ but in the meantime, how much knowledge is not being passed along? And we need a place too, and we need resources.” (Sharon Jinkerson-Brass) 72 Gerald Pfeffer shared that in his experience as a neurologist, the medical system can improve how it supports Indigenous people who want to seek traditional healing either in parallel to or integrated with their neurological care. TJ Lightfoot used the Mi’kmaq concept of Two-Eyed Seeing to speak to their perspective of living in Labrador, expressing that Two-Eyed Seeing is not even on the table for communities where basic access needs are not being met and there is no basic health care access. They stated that Indigenous healing practices cannot be incorporated into a broken health care system. Referring back to the functional neurosurgery presentation, Leah Walker posed the question: “What would support an Indigenous person in having access to that care, and how could an Elder support it?” Improving access to Elders, training young Elders, and giving Indigenous knowledge holders and healers the same respect and honour that society gives to physicians were identified by the group as areas to direct resources to. Looking at the larger picture of the working group’s goals, Judy Illes asked whether the focus on the brain may be premature in the face of broader unaddressed questions about supporting healing and wellness for Indigenous peoples and questioned whether “the brain is ready to be that focus of the journey yet.” She expressed that the working group discussions had significantly influenced her thinking both in daily life and as a neuroethicist, and drawing on a conversation with Dr. Alexandra King from the previous evening reflected further on the diversity of topics that the working group had discussed: “I feel like we aren't talking about brain without talking about brain in relation to mental health, addiction, genetic disorders, you know, HIV, like it's always brain, and its 73 relationship to something. […] And maybe it is that phenomenon of relationality when it comes to brain that is so very special about the brain.” (Judy Illes) Hybrid sharing circle The last part of the meeting focused on the need for change and action. Both Henry G Harder and TJ Lightfoot spoke about experiences of the government inappropriately imposing Western programs on Indigenous communities for suicide prevention and fetal alcohol spectrum disorder, respectively, even in the presence of effective, culturally safe, community-based programs. Henry G Harder and Raymond Collinge both tied this to a need for more openness and education about different perspectives: “And you know, like, having a different understanding, a different worldview when it comes to mental wellness or community wellness is something that the West needs to learn about as well because the issues that are being faced in my communities are no different than being faced in the streets of Vancouver […],” (Henry G Harder) “And the other thing I hear mentioned here was just more sensitivity training, whether it's doctors, police ̶ all people in those fields work together. And, you know, Western medication in our Native culture, beliefs in ceremony, traditions.” (Raymond Collinge) Leah Walker spoke again about her team’s work at Kílala Lelum health centre as they “tr[y] to hold space to have Indigenous and Western knowledges work together,” expressing the 74 importance of “supporting our cultural wellness workers and Elders with the amount of trauma that they see everyday.” Leah and several other members also spoke strongly to the need to lower access barriers for Indigenous peoples to traditional knowledges, medicines, and ceremonies, expressing that access to culture and medicines is a right. Sekani Dakelth spoke to the urgency of this change: “And right now, we need wellness. And we need people and we need knowledge.” (Sekani Dakelth) Through a story, Sharon Jinkerson-Brass described how discovering who she was, learning from her grandmother, and engaging in ceremony gave her well-being: “Our society is based on a lot of fear, a lot of right and wrongness, and a lot of hierarchy. And our culture is based in embracing, in humility, in compassion, and fearlessness. And that's what I learned from my granny: how to not be afraid anymore.” (Sharon Jinkerson-Brass) Reflecting on how being part of the working group has impacted them and how to move forward, several members stated their interest in being part of any direction that the group chooses to take, and Malcolm King recommended that we maintain the diversity in our group’s composition: “It includes academics, Indigenous, allies, it includes Elders, it includes people with lived experience at different things. And I think, together, we bring that breadth of knowledge and experience. […] And as we move forward, I think we should just be mindful to try and look for that balance in the group.” (Malcolm King) 75 Two members expressed an intention to bring what they had learned back to the communities they work with, and several spoke positively about the connections that were made through the group: “So I think the benefit of us all gathering together is that these connections have been made and maybe we can move things forward in small ways that way.” (Nel Wieman) Brainstorming about areas for incremental change, Raymond Collinge expressed from his experience as a housing support worker that there is a shortage of services for people who are experiencing mental health and substance use disorders. Roxanne Mierau identified two changes that would support her work as a counsellor. The first is to expand the First Nations Health Authority’s list of registered mental health service providers to include information about whether each provider identifies as Indigenous and what their scope of practice is. The member of our group who works for the First Nations Health Authority made a note of this to relay back to the organization. Her second suggestion was to create “something written by and for Indigenous people to explain what brain health is, and how to do it in a good way, and how to access that in a good way.” Judy Illes brought up the importance of a strategy for Indigenous brain health across the country and to collaborate with others doing similar work at the national level. I shared the idea of applying for a CIHR grant to allow our group to expand our conversations as well as support individual members’ relevant initiatives. Elder Bryce Mercredi was supportive but also reminded us of how restrictions around funding can pull us away from the original intent of a project to the 76 point where it does not accomplish what we want. Bryce closed this last meeting with a statement about the impact the group made on him: “It's been a wonderful journey for me. I really enjoyed this. I've learned a lot listening to all you people speaking out. And that is all I have to say, thank you very much for allowing me to be part of this group. I enjoyed it immensely. Thank you.” (Bryce Mercredi) 4.3.2 Actions and Outcomes Since the last working group meeting I have sought opportunities to meet in-person with the members who joined virtually and followed up on the proposed areas for action. So far, I have been able to support a member’s community-based initiative with a list of funding opportunities for which they are eligible, and another with key articles from the scoping review study about Indigenous holistic conceptualizations of brain wellness. I researched the details of the CIHR grant that I proposed in the last meeting to potentially support our group in the long-term, but due to the short timeline of my master’s degree it was not feasible for us to apply. Outside of the group, the First Nations Health Authority published a Mental Health Providers Map in July 2022 with more detailed information about the providers including whether they are Indigenous or non-Indigenous (150). Using funds provided by the W. Maurice Young Centre for Applied Ethics through my Graduate Fellowship, I invited four of the working group members to be panelists in a June 2022 Neuroethics Canada Community Conversation with visiting scholar Dr. Krystal Tsosie, a Navajo geneticist and bioethicist at Vanderbilt University in Tennessee (151). Through that event I was able to expand the working group’s conversations into areas including Indigenous data 77 sovereignty and the intersections between genomic ethics and neuroethics, and to continue our discussion of ways to uplift community voices and perspectives. The leadership group published a letter to the editor about the methods used for the working group in the Canadian Journal of Neurological Sciences (152) in response to the article by the Indigenous Knowledge Holders Group of the CBRS (28), and I presented on the methods at two international bioethics conferences. One additional leadership group member (Elder B Mercredi) who was not previously engaged in the field of brain health was invited to join the Indigenous Knowledge Holders Group. I intend to share my completed thesis with that group as well with the hope that it will inform their work of ensuring that neuroscience research in Canada is inclusive of and responsive to the perspectives and priorities of Indigenous communities. 4.4 Discussion This collaborative project brought diverse voices from the academy, community, and health sector into a novel conversation about the meanings of brain wellness in an Indigenous health context. Two-Eyed Seeing emerged as an important concept in both the content of the discussions and the method for creating the working group. Bringing together the best of Indigenous and Western approaches and ways of knowing was key to creating an ethical space for engagement, cultivating transdisciplinary relationships, and advancing ethical methods for neuroscience and neuroethics engagement. 78 4.4.1 Reflecting on Content: The What When the leaders of the working group convened to co-author the letter to the Canadian Journal of Neurological Sciences to report on the application of Indigenous methodologies in this project, we prepared the following short summary statement to express our main learnings: “In the meetings we heard the need to reaffirm holistic conceptualizations of brain wellness and mental health, integrate Indigenous and Western healing approaches, pursue systems- and community-level changes to overcome the continuing health impacts of racism and colonization, and regain connections with culture and spirit.” (152) As I reflect on this statement and my experience in the circles, I think about how much of what was discussed reiterated and reaffirmed what Indigenous peoples around the world have been calling for over the last several decades in the areas of health and wellness (12,48,130). While the holistic perspectives were in significant contrast to Western biomedical ways of approaching brain health, a number of members expressed gratitude for Western medical advances. Dr. Nel Wieman’s statements about bringing together Indigenous and Western approaches in her work as a psychiatrist in a First Nations community highlighted how a Two-Eyed Seeing approach can exceed Western standards of care. This is also reflected in the 22nd Call to Action of the Truth and Reconciliation Commission, for “those who can effect change within the Canadian health-care system to recognize the value of Aboriginal healing practices and use them in the treatment of Aboriginal patients in collaboration with Aboriginal healers and Elders,” (16 p.3). 79 I also heard that cultivating systems that allow this integration will require more work on the side of non-Indigenous medical professionals, policy makers, and others, as we need to increase understanding and awareness of the ways that racism, colonisation, prejudices and stigma are continuing to impede care for Indigenous peoples. Actioning Two-Eyed Seeing in a way that balances both perspectives is political and requires commitment from those working in the mainstream system as well as empowerment of Indigenous peoples to self-determine their own wellness pathways. Members of the group who live in rural, northern and remote communities highlighted that actioning Two-Eyed Seeing in the mainstream medical system cannot be achieved where there is no basic healthcare access. Changes that support respect and awareness of Indigenous ways of knowing can have a range of wellness benefits, including but not limited to mental health and brain wellness. Elder Sharon Jinkerson-Brass described how connecting to culture, spirit and ceremony and understanding dreams and the unconscious mind can facilitate deeper connections between humans and cultivate global oneness. While many of the areas that group members identified as needing change were large and systemic, I also heard that incremental, sustainable, community-level changes can create pockets of cultural safety and excellence. For example, changes were proposed that could reduce the burdens on Indigenous care providers and increase the accessibility of ceremonies, medicines, and traditional knowledges to Indigenous peoples. A number of the priority areas that were identified could be shaped into research questions and be taken up by members of the group or others where further knowledge development would be beneficial. 80 The content of the working group discussions should be considered in the context of the positionalities of the working group members who brought the knowledge. It was challenging to find people to join the group who identified as Indigenous and had expertise in the specific area of brain health or neuroscience (28), so the group members brought a wide range of levels of experience in thinking about the topic of brain wellness. While some members regularly consider brain wellness in an Indigenous context, others expressed that they had not previously considered this question. Regardless, all members contributed meaningfully to the discussions, and most brought knowledge about mental health and wellness or substance use disorders that was directly relevant to considering the brain and mind. As many parts of the working group discussions touched on other aspects of health and wellbeing than the brain and mind, the work also contributes to understanding Indigenous ways of knowing about other aspects of health and of wellness overall. My understanding and interpretation of the content of the working group discussions is also fundamentally shaped by the process I used to contemplate the data and my positionality, biases, and values, particularly as a White woman and settler. Further, as highlighted by Wilson it reflects my understanding only at this point on my trajectory of lifelong learning: “[…] the ability of any researcher, Indigenous or otherwise, to utilize intuitive logic requires a lifetime of practice and training. You know, many problems or topics require a lifetime to analyse and understand properly. […] And while this lifelong analysis is encouraged by Indigenous Elders, it is difficult to reproduce all of the ideas and relationships that go into understanding a concept when you are conducting formal research or writing a paper. […] And even though its difficult to articulate or substantiate in written text, this lifelong analysis 81 is extremely important in an Indigenous way of being and in an Indigenous research paradigm.” (2 pp.119-120) 4.4.2 Reflecting on Method: The Way Applying a working group approach rather than undertaking a study with research participants allowed for the inquiry to be co-constructed, the partnerships and knowledge to develop more organically, and the potential power imbalances between academic and community-based members to be minimized. This approach also allowed me to focus more on the ethics, sensitivity and effectiveness of the approach and on long-term goals of collaboration and knowledge development than on an in-depth content analysis, helping this project to be part of the evolution of improved approaches for engaging with Indigenous communities in neuroscience and neuroethics. Indications of success included comments made during the sharing circles about positive takeaways and learning, expressions of gratitude for being part of the group and interest in staying involved, and high attendance and deep engagement throughout the meetings. Adapting the working group approach to an Indigenous research paradigm was responsive to the limitations that arise from the fact that “Eurocentrism within research has yet to be fully unpacked in the academy or in the systems that support it” (18 p.26). Indigenous epistemologies, ethics, community involvement, and reflexivity shaped the project design alongside patient-oriented research and pragmatic neuroethics frameworks. The Elders guided us in acknowledging spirit through all stages of the work, from the gifting of tobacco and sage to 82 practicing ceremony in the sharing circles. Overall, the method was strengths-based, respected self-determination, and centered community voices and Indigenous ways of knowing. While holding the group meetings on Zoom due to the COVID-19 pandemic was not what was originally imagined for the project, this design had a number of unexpected benefits. Meeting online reduced barriers for participation, which likely contributed to the diverse group composition and high level of attendance. From a technical point of view, the mute feature on Zoom ensured that everyone could speak in the sharing circle uninterrupted. Although we offered an in-person option for the third meeting and funds to cover travel expenses, 5 out of 16 members still joined via Zoom for reasons of convenience or caution of the COVID-19 virus. As we had already established the procedure for holding the sharing circles on Zoom, it was relatively straightforward to integrate virtual and in-person attendees through the hybrid format. The large group size and relatively short meeting durations brought benefits of diversity and convenience, but also limited the depth of knowledge generation that we could achieve. While each person built on what those before them had said, members only had one opportunity of two to five minutes to speak during each circle. This trade-off supported the early stages of a broad, novel, pre-research inquiry and relationship building initiative. A subsequent stage of work with targeted research questions may best be approached through longer meetings, within a smaller group, and/or using conversational Indigenous methodologies that offer opportunities to ask direct questions (153). I encountered a frustrating institutional barrier with the system that UBC uses to administer honorarium payments. It is notoriously difficult for payees to register themselves in 83 the system because it is not user friendly, the guides provided are unclear, and there are significant delays between the date of registration and the administration of the cheques. This created strain on the relationships that I had newly developed with the group members, an experience that was echoed by settler scholar Sarah Flicker at another academic institution in Canada: “the university’s exceptionally slow bureaucratic systems (and policies of not pre-printing cheques) made it very difficult to ensure that people who were already economically vulnerable would be gifted in a timely manner” (154 p.318). Fortunately, UBC has since released Indigenous Finance Guidelines that align with the Indigenous Strategic Plan. It newly includes guidance around respectful and accurate protocols for monetary gifts, as well as practical suggestions for expediting the process such as having research staff register all payees in the system before the event takes place (155). The design of this project had some similarities to public deliberation or public democracy, which is an approach based in liberal democratic values that entails informing a representative group of members of the public about a contentious topic and engaging them in decision making to influence policy (147,156,157). While I incorporated one aspect of this method into the project design by inviting presentations about brain health from Indigenous and neurosurgical perspectives at the second meeting, I decided against including additional elements due to its emphasis of a Western conceptualization of democracy. However, public deliberation was recently adapted for Indigenous communities for the first time by Blacksher and colleagues (147), who engaged three American Indian and Alaska Native communities in deliberation about genomic ethics. A formal research study exploring the meanings of brain wellness may benefit 84 from incorporating elements of their design, as it was well-received by all participating communities according to the post-deliberation survey that was administered. 4.4.3 Reflection on My Experience When I was reviewing the recordings I was moved by the level of respect, generosity, whole heartedness, attentive listening and engagement that each person brought to the sharing circles. I developed a strong respect and admiration for how the sharing circle method supports the sharing of diverse opinions, experiences in the world, and ways of knowing and being. It was challenging at times to navigate my leadership role in the group because I endeavoured to achieve a horizontal structure to enable collaboration. However, without creating a hierarchy, I still needed to provide enough guidance for the group to operate. Additionally, determining how much I should share in the circles given the goal of centering Indigenous and community voices was something I considered at each meeting. I was focused throughout the project on doing my part to cultivate an environment where the diverse members felt listened to and safe. I benefitted from regular guidance from the Indigenous members of the leadership group, the Elders, and other group members who provided support and feedback to implement aspects of an Indigenous research paradigm. I invited several of my former colleagues from the Urban Native Youth Association to the working group which allowed me to consolidate the knowledge and relationships I developed from my experience working at that association and at UBC. I also appreciated the opportunity to make new relationships through the group that have already led to additional interactions and 85 collaborations outside of the working group context. As the initiating member of the group, I will continue to honour the knowledge that was shared, to nourish the relationships, and to seek out opportunities for further engagement of the group. 4.5 Conclusions Understanding and incorporating Indigenous communities’ knowledges about brain wellness is an emerging area for inquiry and strategizing in Canada. This project set out to catalyze conversations and partnerships for this purpose, and to advance ethical methods for neuroscience and neuroethics partnerships with Indigenous communities. By focusing more on the “way” than the “what,” sustainability and doing right by the process were prioritized. Members of the working group called for systemic and community-based changes to address the continuing impacts of racism and colonization, support Indigenous peoples in connecting to their traditional cultures and knowledges and regain connections to spirit, prioritize self-determination, and address access challenges for rural, remote and northern communities. Further, integrating local Indigenous knowledges into healthcare delivery through Two-Eyed Seeing was seen as having the potential to exceed standards of care set by the Western medical system. This project also highlighted the potential for supporting the resurgence and transmission of traditional Indigenous knowledges about the brain and mind, and of supporting education and building capacity in neuroscience for future generations (28,158). The meetings contributed to the formation of new and strengthened relationships and partnerships, provided a forum for learning, action, and highlighted priority areas and research questions around the meanings of brain wellness and mental health. 86 The method was strengths-based, and it centered community voices and Indigenous ways of knowing about the brain, mind, and wellness. Although convening the working group virtually due to the COVID-19 pandemic initially presented challenges, ultimately the approach had a number of benefits. Inclusivity and accessibility were the most significant among these. The incorporation of an Indigenous research paradigm into the working group approach challenged the privileging of empiricism in brain research. As Kovach (18) describes, “Indigenous methodologies offer a systematic but different approach to knowledge construction and are prompting Western institutions to expand the notion of what counts as knowledge,” (p.28). The task of applying an Indigenous research paradigm is not straightforward and needs to be approached with Indigenous leadership, applied towards Indigenous-driven priority areas, and adapted for specific contexts and communities. Kovach (18) further states: “While this is not a matter of one worldview over another, how we make room to honour both and bridge the epistemic differences is not going to be easy. This will be a challenge so long as the colonial relationships surrounding the reproduction of knowledge persist inside institutional centres,” (p.44). The working group approach presented here and the knowledge that was generated by the group have the potential to support a breaking away from the status quo of Western thinking in neuroscience and neuroethics that is ethically-grounded, sustainable, and supportive of Indigenous sovereignty and community-led actions. 87 Chapter 5: Summary and Conclusions 5.1 Summary The purpose of this project was to explore and strategize around meanings, priorities and ethics for brain health and mental wellness in an Indigenous health context. I started by grounding the work in the context of historical and ongoing settler colonialism and the need for a radically renewed relationship between Canada and Indigenous peoples. I considered my positionality as a White settler with an academic and research background in neuroscience and community work, and the potential role of neuroethicists and neuroscientists to support the movement towards a more global, responsive, decolonized and diverse future for brain and ethics research. The project was comprised of three components. First, I undertook a study focused on improving the comprehensiveness of literature review search strategies about Indigenous populations by identifying critical gaps in current methods and approaches to closing them. Many of the challenges stemmed from the complexities inherent to defining Indigenous peoples as a highly heterogenous group. Using this information, I was able to formulate a search strategy for the scoping review that encompassed a broader diversity of Indigenous peoples. The review investigated the defining themes of 66 academic articles about global Indigenous peoples’ perspectives on the mind and brain including the main foci, ethics themes, years of publication, countries of the authors and Indigenous groups studied, and methods applied. The results suggest that conceptual differences between Indigenous and Western biomedical ways of knowing about the brain and mind include holism, spirituality, wellness and well-being, relationships, and Indigenous ethics. 88 Following the two preparatory studies, as part of a leadership group I established the 20-member working group that convened for three meetings. The approach was community-based and collaborative to serve the goals of building partnerships, catalyzing continuing conversations, taking collective action, and engaging in multidisciplinary expert exploration that would generate research questions for future work. The group engaged in Elder-led sharing circles and incorporated aspects of an Indigenous research paradigm and Western approaches to community engagement. I prepared a reflective summary of the meeting content which highlighted the need to reaffirm holistic conceptualizations of brain wellness and mental health, integrate healing approaches, pursue change to overcome the continuing health impacts of racism and colonization, and regain connections with culture and spirit. Outcomes of the initiative to date include new and strengthened relationships, increased knowledge among group members of brain and mind wellness, a publication by the leadership group about methods, a public community conversation, and a member joining the Indigenous Knowledge Holders Group of the Canadian Brain Research Strategy. 5.2 Overall Strengths and Limitations of the Project The main strength of this project was the close attention to the methods and processes for working with Indigenous peoples and knowledges. The investigation in chapter 2 ensured that the search strategy we developed for the scoping review in chapter 3 was thorough and responsive to the heterogeneity of Indigenous communities and the accompanying definitional challenges. While the scoping review applied Western methodologies to promote dissemination to the wider neurological sciences community, the working group approach incorporated many 89 aspects of an Indigenous research paradigm to affirm and center the strengths of Indigenous peoples and communities and their inherent rights to sovereignty and self-determination. Much of the work of this thesis was based on the premise of shared epistemologies, ethics, and ways of knowing and being of many Indigenous peoples around the globe. Still, there are limits to this generalizability. Wherever possible and feasible, I attributed the knowledge that was shared to specific communities and individuals, including creating a detailed community list for the scoping review in Table 3.2, including the Bio Book from the working group in Appendix D, and attributing quotes and ideas to the full names of group members in the reflective summary in chapter 4.3.1. One area where further generalizing could be warranted is in applying the learnings to understand Indigenous ways of knowing about other aspects of health and wellbeing. For example, that the health of specific organs should be considered in connection to broader physical, emotional, spiritual and emotional factors rather than in isolation. The work benefitted enormously from and was made possible by the initiating conversation and subsequent collaboration with Dr Malcolm King as a First Nations researcher with extensive experience and networks in Indigenous health. My community-based experience and formal academic education were essential to my role of leading the projects, especially in bringing an awareness of my positionality as a settler and of the tendency for academic work to reinforce Eurocentrism where it is not directly opposed. Neuroethics was a useful platform for initiating and then disseminating the work to academic audiences, but as this was only the second neuroethics project with Indigenous peoples that I am aware of there was not a substantial previous body of work to draw on for guidance. I found closer correlates in genomic ethics 90 research by teams in the USA (e.g., 147,159,160) as well as literature about decolonizing bioethics (161). 5.3 Conclusions This project brought together Indigenous and Western knowledges and approaches for brain wellness and mental health with a focus not only on the what but the way. The work contributes to understanding some key aspects of Indigenous ways of knowing about the brain and mind and how these can differ from biomedical models. Given its novelty, the project has important implications for improving the ethics of how brain health projects are approached with Indigenous communities, from literature reviews through to community-based undertakings. It is responsive to calls within neuroethics to support cultural inclusion (162,163), racial justice (164), education and capacity building within Indigenous communities (28,158), and a fairer distribution of the benefits of neuroscience across society (165). The results inform cultural humility and safety in clinical care for brain wellness and mental health by raising awareness of how Indigenous peoples presenting with conditions impacting the brain and mind may think about their wellness and treatment pathways. When I recently presented the work to a group of neurology residents at UBC, they showed interest in improving their knowledge and skills for supporting the needs and interests of Indigenous patients. By directly involving communities in developing relevant knowledge and action in this area, the methods developed for the working group initiative can also be applied to promote meaningful partnerships and create ethical spaces to explore other health science topics that are 91 important to Indigenous communities. The methods may also be amenable to modification for engaging with other culturally diverse and marginalized communities. 5.3.1 Future Directions The project highlighted that there is work to do in the area of brain health to better integrate, understand, and respect Indigenous ways of knowing about the brain and mind, and to build respectful relationships with Indigenous peoples that support self-determination and capacity building in this area. This project indirectly informs and has been informed by the Indigenous Knowledge Holders Group of the CBRS who are strategizing around these issues at the national level. Next steps may include community-based initiatives to support the resurgence and transmission of Indigenous knowledges about the brain and mind, to understand the specific impacts of colonization on brain wellness, to catalyze capacity building, or to inquire into how factors such as living in a rural or remote community can intersect with Indigenous identity to impact access to medical advancements for brain disorders and mental health (Harding et al., in press). This progress will be well served by the increasing awareness within society of the discrimination and health disparities that Indigenous peoples experience, and by the rising numbers of Indigenous scholars and activists who are leading change and advancing sovereignty and self-determination. 92 References 1. Breen A. You do not belong here: Storying allyship in an ugly sweater. In: Wilson S, Breen A, Dupre L, editors. Research & reconciliation. Toronto, Canada: Canadian Scholars; 2019. p. 49–59. 2. Wilson S. 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Taylor L, Rommelfanger KS. Mitigating white Western individualistic bias and creating more inclusive neuroscience [Internet]. Nat Rev Neurosci. 2022. 114 Appendices Appendix A Search terms used in four global Indigenous health literature reviews. Authors and Publication Year Search Terms Used Tranberg et al., 2016 (8) Aboriginal OR Indigenous OR “Native Americans” OR Maori OR “Torres Strait Islander” Pollock et al., 2018 (9) "First Nation" Or "First Nations" Or "Pacific Islander" Or "Pacific Islanders" Or "Torres Strait Islander" Or "Torres Strait Islanders" Or Aborigin* Or Africa* Or Alaska* Or Aleut* Or Amerind* Or Arctic Or Aymara Or Bushmen Or Chukchi Or Chukotka* Or Circumpolar Or Eskimo* Or Greenland* Or Hmong Or Indian* Or Indigen* Or Inuit* Or Inupiaq Or Inupiat Or Khanty Or Maori* Or Mapuche Or Metis Or Native* Or Navaho* Or Navajo* Or Nenets Or Quechua Or Saami Or Sami Or Samoan* Or Siberia* Or Skolt Or Tribal Or Tribe* Or Xingu* Or Yup’ik Or Yupik Or Zuni Bishop-Williams et al., 2017 (10) Aasax OR Aboriginal OR “Aboriginal-Malay” OR Aborigine OR Achi OR Achuar OR Adibashi OR Adivasi OR Adivasis OR Afar OR Ainu OR Aka OR Akawai OR Akha OR Akie OR Akoula OR Akurio OR Akwoa OR “al-Kaabneh” OR “al-Asarmeh” OR “al-Ramadin” OR “al-Rshaida” OR “Alaska Native*” OR Aleut OR Alutor OR Amazigh OR Ambo OR “American Indian*” OR Ameridian OR Amuesha OR Anak OR “Andean Kichwe” OR Andoa OR Andorrans OR Angaite OR Anikhwe OR Anu OR Arara OR Arawak OR “Arawak-Taino” OR Arwak OR Ashaninka OR Atayal OR Austronesian OR “Ava Guarani” OR Awajun OR Awa OR Awakateco OR Aweer OR Ayeoreo OR Aymara OR Ayoreo OR Aztec OR Baaka OR Baantonu OR Babi OR Bahnar OR Babongo OR Bacwa OR Bagame OR Bagombe OR Bagyeli OR BaGyeli OR Bajuni OR Baka OR Bakgalagadi OR Bakola OR Bakongo OR Bakoya OR Balala OR Bambara OR Bambuti OR Bantu OR Barabaig OR Bariba OR Barimba OR Basarwa OR Bassari OR Batwa OR Bawarwa OR BaWka OR Bawn OR BaYeyi OR Bedzam OR Benet OR Berabis OR Berawan OR Berber OR Berbers OR Bidayuh OR Bigombe OR Biharis OR Bilma OR Bisayah OR Bobo OR Boeschs OR Bofi OR Boni OR Bonis OR Boranna OR Boro OR Bororo OR Boruka OR Botsarwa OR Bozo OR Brao OR Bribri OR “Bri Bri” OR Brunca OR Bugakhwe OR Bulu OR Bumipeuteras OR Bunak OR Bunun OR Bwiti OR Cabecar OR Cacaopera OR Campeche OR Carib OR Caribs OR “Ch’orti” OR Chachi OR Chaima OR Chakma OR Chalchiteco OR Chamorro OR Chamorru OR Chamorous OR “Chao-Khao” OR “Chao Ley” OR Charrua OR Chelkancy OR Chiapas OR Chibcha OR Chibchense OR Chipaya OR Chiriguano OR Chiquito OR Chiquitano OR Chorotega OR Chorti OR Cofan OR Chuaa OR Chuj OR Chukchi OR Chulymcy OR Chuvancy OR Ciboney OR “Ciboney-Taino-Arawak” OR “Cocama-Cocomilla” OR Colla OR Copts OR Cotier OR Cree OR Cumanagoto OR Dabou OR Dagiri OR Dahalo OR Danisi OR Daroobe 115 (Cont’d: Bishop-Williams et al., 2017) OR Datoga OR Daza OR Degar OR Deti OR Diaguita OR Dinka OR Dioula OR Ditammari OR Dogon OR Dolgan OR Doma OR Dukha OR Dusun OR Ebrie OR “egga hodaabe” OR Elmolo OR “El Mono” OR Embera OR Emerillon OR Ency OR Endorois OR “Enlhet Norte” OR Enxet OR “Enxet Sur” OR Epera OR Eskimo OR “Ese Eja” OR Evenk OR Ewondo OR Fatukuku OR “First Nation*” OR “Forest dwell*” OR Fuegian OR Fulani OR Fulbe OR Galibia OR Galibi OR Garifuna OR Gaoshan OR Gio OR Guadalcanese OR Guana OR Guaicuru OR Guarani OR “Guarani Mbya” OR Guyami OR Guaymi OR Guerrero OR Gurani OR Guransi OR Gurung OR “G//ana” OR “G/wi” OR “Gwich’in” OR Hadzabe OR Hadza OR Haida OR Herero OR Hidalgo OR “Hill People” OR “Hill Person” OR Hmong OR Hoa OR Huambisa OR Huastec OR Hui OR Huetar OR Hutu OR Iban OR Igotot OR “Ik” OR Imazighn OR Imazighen OR Indigenous OR “Indigenous Palestinians” OR Ingarico OR Inuit OR Inupiat OR Inuvialut OR Iroquoian OR Itelmen OR “Itza’” OR Ixil OR Jacalteco OR “Jahalin Bedouin” OR Jarai OR Jivi OR Jumma OR “Ju’hoansi” OR “K’iche” OR “Ka Pei Aina” OR Kachin OR Kaiowa OR Kalanga OR Kalina OR “Kalina-go” OR Kalinago OR “Kalinago-Taino” OR “Kali’na” OR Kamchadal OR Kanak OR “Kanaka Maoli” OR Kanuri OR Kaqchikel OR Karamajong OR Karenni OR Kavalan OR Kayapo OR Kawashkar OR Kayan OR Kazakh OR Kedayan OR Kelait OR Kenyah OR Kereki OR Kety OR “Khali’nago” OR Khamu OR Khanty OR Khengs OR “Khmer Krom” OR Khoekhoe OR “Khoe-San” OR Khoikhoi OR Khoisan OR Khomani OR “Khudro Nrigoshthhi” OR Khumi OR Khwe OR Khyang OR Kichwas OR Kipsigis OR Kirdi OR Koba OR Koryak OR Krio OR Krohn OR Kua OR Kumandincy OR Kuna OR Kuy OR Kwisi OR Lahu OR Lao OR “Laotian Tribes” OR Lenca OR Lickanantay OR Limbu OR Lisu OR Livs OR Lobi OR Lokono OR Loma OR Lua OR Lumad OR “Lunda-Chokwe” OR Lushai OR Maasai OR Macourai OR Macuxi OR Macuzi OR Magar OR Makasae OR Makuxi OR Malagasy OR Malakote OR Malay OR “Malayo-Polynesian” OR Maleku OR Mangyan OR Mani OR Mano OR Mansi OR Maori OR Mam OR Manjo OR Marma OR “Marsh Dwellers” OR Mapuche OR Maskoy OR “masyarakat adat” OR Mataco OR “Mataco Matguayo” OR Matagulpa OR Maya OR “Maya Chorti” OR Mayagna OR Mbanderu OR Mbini OR Mbororo OR Mbukushu OR Mbundu OR Mbuti OR Mbri OR Mbya OR Mdendjele OR Melanesian OR “Melanesian-Papauan” OR Mestico OR Mestizo OR Merina OR Metis OR Miao OR Mien OR Mikaya OR Miskito OR Miskitu OR Misquito OR Mixte OR Mnong OR Mogeno OR “Mon-Khmer” OR Montagnards OR Mopan OR Moxeno OR Mozabite OR Mpukushu OR Mru OR Muong OR Murut OR “N/oakhwe” OR “N’guigmi” OR Nagas OR Nahoa OR Nahua OR Nahuatl OR Nama OR Nambiquara OR Nanaicy OR Nandeva OR “Nandevi Guarani” OR Naro OR “Naso Tjerdi” OR Native* OR “Native American*” OR “Native Hawai’ian*” OR Negidalcy OR Negeri OR Negrito OR Nemadi OR Nenets OR Nganasan OR Ngabe OR Ngobe OR “Ngobe-Bugle” OR Nivkhy OR Nuer OR “Nyaneka-Nkumbi” OR Oaxaca OR Ocanxiu OR Ogiek OR Ogoni OR Ojibway OR Okinawans OR “Orang Asli” OR Orochi OR Oroki OR Otomi OR Ovimibundu OR Oyampi OR “Pai Tavytera” OR Paiwan OR Palenqueros OR Palikur OR Pankho OR Patamona OR Pech OR Pemon OR Peul OR Peulh OR Penan OR Piaroa OR 116 (Cont’d: Bishop-Williams et al., 2017) “Ping Pu” OR Pipil OR Pocomam OR Pokot OR Poqomam OR “Poqomchi’” OR Puebla OR Punan OR Puyuma OR “Q’anjob’al” OR “Q’eqchi” OR Qawasqar OR Qicaque OR Quechua OR Quenchua OR “Quintano Roo” OR Qom OR Rai OR Raisales OR Rakhine OR Rama OR Rapanui OR “Rapa Nui” OR Raute OR Rhade OR Roraima OR Rotumans OR Rukai OR Saami OR Sabaot OR Saharawis OR Saisyat OR Sakapulteco OR Sakizaya OR Sami OR (San AND Africa) OR Sanapan OR Sanapana OR Sandawe OR “Santa Rosa Carib” OR Sanya OR Saramancas OR (“Scheduled Tribes” AND India) OR Secoya OR Sediq OR Selkup OR Semang OR Sengwer OR Senoi OR Shan OR Sherpa OR Shipibo OR “Shipibo-Conibo” OR Shiwiar OR Shorcy OR Shua OR Shuar OR Siona OR Sipakapense OR Soioty OR “South Sea Islander*” OR Stieng OR “Sumu-Mayangna” OR Sutiaba OR Tachangya OR “Tai-Kadai” OR Taino OR “Taino-Kalingo” OR Tamang OR Tampuan OR Tapeba OR Tapebo OR Tareno OR Taurepang OR Tawahka OR Tazy OR Teda OR Teenek OR Teko OR Tektiteko OR Telengity OR Teleuty OR Temenbe OR Teribe OR Tesker OR Thakali OR Tharu OR Thao OR Tikuna OR Tikigaq OR Tirio OR Toba OR “Toba Maskoy” OR Tofolar OR Tolai OR Toloupan OR Tomarao OR Topnaars OR “Torres Straight Islander*” OR Totonac OR Toubou OR Truku OR Tsexakhwe OR Tripura OR Tsaatan OR Tsachila OR Tsou OR Tsumkwe OR Tshwa OR Tuareg OR Tuaregare OR Tubolar OR Tubu OR Tugen OR Tukano OR Tupi OR Tutong OR Tutsi OR “Tuvin-Todjin” OR Twa OR Tyua OR “Tz’utujil” OR Tzeltal OR Tzotzil OR Uchay OR Udege OR Ulchi OR “Ureueu-Wau-Wau” OR Uru OR Uspanteko OR Vadda OR Vadema OR Vai OR Veddhas OR Veps OR Vyadha OR “Waaniy-a-Laato” OR Waata OR Wadoma OR Wagashi OR Wapaichana OR Waorani OR Wapixana OR Warao OR Warrau OR “Warrau Wayana” OR Wayampi OR Wayana OR Wayeyi OR Wayuu OR Wichi OR Wodaabe OR Wounaan OR Xinka OR Yaaku OR Yami OR Yamana OR Yanomami OR Yukpa OR Yvytoso OR Zamuco OR Zapara OR Zapotec OR “!Xoo” OR “//’Xauesi” OR “/Xaisa” OR “‘Akateco” OR ((Indigenous OR Aboriginal OR Native) AND (Ache OR Algonquin OR Amis OR Bedouin OR Bugle OR Bushmen OR Dakota OR Dan OR Fang OR Herder OR Herdsmen OR Indian* OR Karen OR Maroon OR Mohawk OR Mon OR pastoralist* OR Papua OR Pear OR Potters OR Pygmy OR Pygymy OR Rade OR Roma OR Sab OR Squamish OR Tay OR Trio OR Yucatan)) Middleton et al., 2020 (11) Aasax OR Aboriginal OR “Aboriginal-Malay” OR Aborigine OR Achi OR Achuar OR Adibashi OR Adivasi OR Adivasis OR Afar OR Ainu OR Aka OR Akawai OR Akha OR Akie OR Akoula OR Akurio OR Akwoa OR “al-Kaabneh” OR “al-Asarmeh” OR “al-Ramadin” OR “al-Rshaida” OR “Alaska Native” OR “Alaska Natives” OR Aleut OR Alutor OR Amazigh OR Ambo OR “American Indian” OR “American Indians” OR Ameridian OR Amuesha OR Anak OR “Andean Kichwe” OR Andoa OR Andorrans OR Angaite OR Anikhwe OR Anu OR Arara OR Arawak OR “ArawakTaino” OR Arwak OR Ashaninka OR Atayal OR Austronesian OR “Ava Guarani” OR Awajun OR Awa OR Awakateco OR Aweer OR Ayeoreo OR Aymara OR Ayoreo OR Aztec OR Baaka OR Baantonu OR Babi OR Bahnar OR Babongo OR Bacwa OR Bagame OR Bagombe OR Bagyeli OR BaGyeli OR Bajuni OR Baka OR Bakgalagadi OR Bakola OR Bakongo OR Bakoya OR Balala OR Bambara OR 117 (Cont’d: Middleton et al., 2020) Bambuti OR Bantu OR Barabaig OR Bariba OR Barimba OR Basarwa OR Bassari OR Batwa OR Bawarwa OR BaWka OR Bawn OR BaYeyi OR Bedzam OR Benet OR Berabis OR Berawan OR Berber OR Berbers OR Bidayuh OR Bigombe OR Biharis OR Bilma OR Bisayah OR Bobo OR Boeschs OR Bofi OR Boni OR Bonis OR Boranna OR Boro OR Bororo OR Boruka OR Botsarwa OR Bozo OR Brao OR Bribri OR “Bri Bri” OR Brunca OR Bugakhwe OR Bulu OR Bumipeuteras OR Bunak OR Bunun OR Bwiti OR Cabecar OR Cacaopera OR Campeche OR Carib OR Caribs OR “Ch’orti” OR Chachi OR Chaima OR Chakma OR Chalchiteco OR Chamorro OR Chamorru OR Chamorous OR “Chao-Khao” OR “Chao Ley” OR Charrua OR Chelkancy OR Chiapas OR Chibcha OR Chibchense OR Chipaya OR Chiriguano OR Chiquito OR Chiquitano OR Chorotega OR Chorti OR Cofan OR Chuaa OR Chuj OR Chukchi OR Chulymcy OR Chuvancy OR Ciboney OR “Ciboney-Taino-Arawak” OR “CocamaCocomilla” OR Colla OR Copts OR Cotier OR Cree OR Cumanagoto OR Dabou OR Dagiri OR Dahalo OR Danisi OR Daroobe OR Datoga OR Daza OR Degar OR Deti OR Diaguita OR Dinka OR Dioula OR Ditammari OR Dogon OR Dolgan OR Doma OR Dukha OR Dusun OR Ebrie OR “egga hodaabe” OR Elmolo OR “El Mono” OR Embera OR Emerillon OR Ency OR Endorois OR “Enlhet Norte” OR Enxet OR “Enxet Sur” OR Epera OR Eskimo OR “Ese Eja” OR Evenk OR Ewondo OR Fatukuku OR “First Nation” OR “First Nations” OR “Forest dweller” OR “Forest dwellers” OR Fuegian OR Fulani OR Fulbe OR Galibia OR Galibi OR Garifuna OR Gaoshan OR Gio OR Guadalcanese OR Guana OR Guaicuru OR Guarani OR “Guarani Mbya” OR Guyami OR Guaymi OR Guerrero OR Gurani OR Guransi OR Gurung OR “G//ana” OR “G/wi” OR “Gwich’in” OR Hadzabe OR Hadza OR Haida OR Herero OR Hidalgo OR “Hill People” OR “Hill Person” OR Hmong OR “Hoa” OR Huambisa OR Huastec OR Hui OR Huetar OR Hutu OR Iban OR Igotot OR “Ik” OR Imazighn OR Imazighen OR Indigenous OR “Indigenous Palestinians” OR Ingarico OR Inuit OR Inupiat OR Inuvialut OR Iroquoian OR Itelmen OR “Itza’” OR Ixil OR Jacalteco OR “Jahalin Bedouin” OR Jarai OR Jivi OR Jumma OR “Ju’hoansi” OR “K’iche” OR “Ka Pei Aina” OR Kachin OR Kaiowa OR Kalanga OR Kalina OR “Kalina-go” OR Kalinago OR “Kalinago-Taino” OR “Kali’na” OR Kamchadal OR Kanak OR “Kanaka Maoli” OR Kanuri OR Kaqchikel OR Karamajong OR Karenni OR Kavalan OR Kayapo OR Kawashkar OR Kayan OR Kazakh OR Kedayan OR Kelait OR Kenyah OR Kereki OR Kety OR “Khali’nago” OR Khamu OR Khanty OR Khengs OR “Khmer Krom” OR Khoekhoe OR “KhoeSan” OR Khoikhoi OR Khoisan OR Khomani OR “Khudro Nrigoshthhi” OR Khumi OR Khwe OR Khyang OR Kichwas OR Kipsigis OR Kirdi OR Koba OR Koryak OR Krio OR Krohn OR Kua OR Kumandincy OR Kuna OR Kuy OR Kwisi OR Lahu OR Lao OR “Laotian Tribes” OR Lenca OR Lickanantay OR Limbu OR Lisu OR Livs OR Lobi OR Lokono OR Loma OR Lua OR Lumad OR “Lunda-Chokwe” OR Lushai OR Maasai OR Macourai OR Macuxi OR Macuzi OR Magar OR Makasae OR Makuxi OR Malagasy OR Malakote OR Malay OR “Malayo-Polynesian” OR Maleku OR Mangyan OR Mani OR Mano OR Mansi OR Maori OR Mam OR Manjo OR Marma OR “Marsh Dwellers” OR Mapuche OR Maskoy OR “masyarakat adat” OR Mataco OR “Mataco Matguayo” OR Matagulpa OR Maya OR 118 (Cont’d: Middleton et al., 2020) “Maya Chorti” OR Mayagna OR Mbanderu OR Mbini OR Mbororo OR Mbukushu OR Mbundu OR Mbuti OR Mbri OR Mbya OR Mdendjele OR Melanesian OR “Melanesian-Papauan” OR Mestico OR Mestizo OR Merina OR Metis OR Miao OR Mien OR Mikaya OR Miskito OR Miskitu OR Misquito OR Mixte OR Mnong OR Mogeno OR “MonKhmer” OR Montagnards OR Mopan OR Moxeno OR Mozabite OR Mpukushu OR Mru OR Muong OR Murut OR “N/oakhwe” OR “N’guigmi” OR Nagas OR “Nahoa” OR Nahua OR Nahuatl OR Nama OR Nambiquara OR Nanaicy OR Nandeva OR “Nandevi Guarani” OR Naro OR “Naso Tjerdi” OR Native* OR “Native American” OR “Native Americans” OR “Native Hawai’ian” OR “Native Hawai’ians” OR Negidalcy OR Negeri OR Negrito OR Nemadi OR Nenets OR Nganasan OR Ngabe OR Ngobe OR “Ngobe-Bugle” OR Nivkhy OR Nuer OR “Nyaneka-Nkumbi” OR Oaxaca OR Ocanxiu OR Ogiek OR Ogoni OR Ojibway OR Okinawans OR “Orang Asli” OR Orochi OR Oroki OR Otomi OR Ovimibundu OR Oyampi OR “Pai Tavytera” OR Paiwan OR Palenqueros OR Palikur OR Pankho OR Patamona OR Pech OR Pemon OR Peul OR Peulh OR Penan OR Piaroa OR “Ping Pu” OR Pipil OR Pocomam OR Pokot OR Poqomam OR “Poqomchi’” OR Puebla OR Punan OR Puyuma OR “Q’anjob’al” OR “Q’eqchi” OR Qawasqar OR Qicaque OR Quechua OR Quenchua OR “Quintano Roo” OR Qom OR Rai OR Raisales OR Rakhine OR Rama OR Rapanui OR “Rapa Nui” OR Raute OR Rhade OR Roraima OR Rotumans OR Rukai OR Saami OR Sabaot OR Saharawis OR Saisyat OR Sakapulteco OR Sakizaya OR Sami OR (San AND Africa) OR Sanapan OR Sanapana OR Sandawe OR “Santa Rosa Carib” OR Sanya OR Saramancas OR (“Scheduled Tribes” AND India) OR Secoya OR Sediq OR Selkup OR Semang OR Sengwer OR Senoi OR Shan OR “Sherpa” OR Shipibo OR “Shipibo-Conibo” OR Shiwiar OR Shorcy OR Shua OR Shuar OR Siona OR Sipakapense OR Soioty OR “South Sea Islander” OR “South Sea Islanders” OR Stieng OR “Sumu-Mayangna” OR Sutiaba OR Tachangya OR “Tai-Kadai” OR Taino OR “Taino-Kalingo” OR Tamang OR Tampuan OR Tapeba OR Tapebo OR Tareno OR Taurepang OR Tawahka OR Tazy OR Teda OR Teenek OR Teko OR Tektiteko OR Telengity OR Teleuty OR Temenbe OR Teribe OR Tesker OR Thakali OR Tharu OR “Thao” OR Tikuna OR Tikigaq OR Tirio OR Toba OR “Toba Maskoy” OR Tofolar OR Tolai OR Toloupan OR Tomarao OR Topnaars OR “Torres Straight Islander” OR “Torres Straight Islanders” OR Totonac OR Toubou OR Truku OR Tsexakhwe OR Tripura OR Tsaatan OR Tsachila OR Tsou OR Tsumkwe OR Tshwa OR Tuareg OR Tuaregare OR Tubolar OR Tubu OR Tugen OR Tukano OR Tupi OR Tutong OR Tutsi OR “Tuvin-Todjin” OR Twa OR Tyua OR “Tz’utujil” OR Tzeltal OR Tzotzil OR Uchay OR Udege OR Ulchi OR “Ureueu-Wau-Wau” OR Uru OR Uspanteko OR Vadda OR Vadema OR Vai OR Veddhas OR Veps OR Vyadha OR “Waaniy-a-Laato” OR Waata OR Wadoma OR Wagashi OR Wapaichana OR Waorani OR Wapixana OR Warao OR Warrau OR “Warrau Wayana” OR Wayampi OR Wayana OR Wayeyi OR Wayuu OR Wichi OR Wodaabe OR Wounaan OR Xinka OR Yaaku OR Yami OR Yamana OR Yanomami OR Yukpa OR Yvytoso OR Zamuco OR Zapara OR Zapotec OR “!Xoo” OR “//’Xauesi” OR “/Xaisa” OR “‘Akateco” OR 119 ((Indigenous OR Aboriginal OR Native) AND (“Ache” OR Algonquin OR Amis OR Bedouin OR “Bugle” OR Bushmen OR Dakota OR Dan OR Fang OR Herder OR Herdsmen OR Indian* OR Karen OR Maroon OR Mohawk OR Mon OR pastoralist* OR Papua OR “Pear” OR Potters OR Pygmy OR Pygymy OR Rade OR Roma OR Sab OR Squamish OR Tay OR Trio OR Yucatan)) 120 Appendix B Search strategies for all databases 1. MEDLINE (Ovid) Concept National Library of Medicine Medical Subject Headings (MeSH) Search terms Indigenous exp American Native Continental Ancestry Group/ Alaska Natives/ Indians, Central American/ Indians, North American/ Indians, South American/ exp Indigenous Peoples/ Inuits/ Oceanic Ancestry Group/ aborig* or indigen* or first nation* or (native adj3 people) or (alaska* adj3 native*) or inuit* or metis or (native adj3 america*) or (oceanic adj3 ancestry) or (hawai* adj3 native) or pacific islander* or pacific island* native* or (america* adj3 indi*) or amerind* Brain and mind Brain brain or mind or neuro* or cerebr* or cognit* or encephal* Search was limited to title, abstract, subject headings, and heading words. The two concepts were combined using AND. 2. The Cumulative Index to Nursing and Allied Health Literature (CINAHL Complete: EBSCO) Concept CINAHL Subject Headings Search terms Indigenous Exp Indigenous peoples aborig* OR indigen* OR “first nation*” OR “native N3 people” OR “alaska* N3 native*” OR inuit* OR metis OR “native N3 america*” OR “oceanic N3 ancestry” OR “hawai* N3 native” OR “pacific islander*” OR “pacific island* native*” OR “america* N3 indi*” OR amerind* Brain and mind Brain brain OR mind OR neuro* OR cerebr* OR cognit* OR encephal* Search was limited to abstract. The two concepts were combined using AND. 3. Informit Indigenous Collection and Native Health Database Concept Search terms Brain and Mind brain OR mind OR neuro* OR cerebr* OR cognit* OR encephal* Search was limited to abstract for Informit Indigenous Collection. No limits were applied to the Native Health Database. 121 Appendix C Data extraction chart Column title Guiding notes Citation Full citation Language Language of article Research or review article Research articles: primary research, case studies Review articles: commentaries, literature reviews Methods Methods used in study Corresponding author’s country of affiliation As indicated in the article Indigenous communities Names of the Indigenous communities discussed Country of Indigenous communities The countries in which the Indigenous communities reside Participant characteristics Salient characteristics of research participants, e.g., age, community role Focus of article Primary theme and purpose of the article Impactful quotes Quotes highlighting theme and purpose Psychosocial/spiritual/ supernatural concepts Concepts relating to Indigenous spiritualities and the brain or mind Ethics References to or discussion of Indigenous and research ethics 122 Appendix D Indigenous Brain Health and Mental Wellness Working Group Bio Book Bryce Mercredi (he/him/his) I am of Metis heritage from Yellowknife, NWT and lived on Vancouver Island for forty years, 10 years in Pt. Hardy and the remainder in Comox. My ancestry is with the fur trade and exploration of the North. Cheyenne Johnson (she/her/hers) I am of mixed-Settler and Indigenous (Salteaux) ancestry and am a member of the Tootinaowaziibeeng First Nation (Valley River), in what is now known as southern Manitoba and I currently reside as an uninvited guest on the stolen traditional and unceded territories of the xʷməθkʷəy̓əm (Musqueam), Sḵwx̱wú7mesh (Squamish), and Səl̓ílwətaɬ (Tsleil-Waututh) Nations. I am a registered nurse with a graduate degree in Public Health and Fellowship training in addiction medicine. I am currently the Executive Director of the BC Centre on Substance Use. Corrina Chase Tawnshi, my name is Corrina Chase, and I am from the Metis Nation. My ancestry is rooted with the Algonquin people from Southern Ontario, and I am mixed with Scottish ancestry. I am the First Nations Addictions Care Partnership Manager at FNHA/BCCSU. I am looking forward to connecting with the team to discuss and unpack what brain wellness is or isn’t from my lens. 123 Gerald Pfeffer (he/him/his) I am a clinician-researcher at the University of Calgary. My clinical and research work is focused on adult-onset genetic neuromuscular disorders, and recently also includes Indigenous health research. I also have interests in neuroethics and health equity. Henry G. Harder (he/him/his) I am an Indigenous Scholar and Professor Emeritus and past Chair of the School of Health Sciences at the University of Northern British Columbia. I am currently the Vice Provost of Indigenous Initiatives at UNBC. I am also a registered psychologist. Jennifer Walker (she/her/hers) I am a member of the Six Nations of the Grand River. I am Haudenosaunee through my maternal family line and also have mixed British ancestry. I am an Associate Professor at McMaster University in the Department of Health Research Methods, Evidence, and Impact and the Indigenous Health Learning Lodge. A large part of my research program focuses on dementia and cognition in Indigenous populations. Judy Illes I am a Professor of Neurology and Director of Neuroethics Canada at UBC and co-lead of the Canadian Brain Research Strategy. My research focuses on the ethical, legal, social and policy challenges specifically at the intersection of the neurosciences and biomedical ethics. 124 Leah Walker (she/her/hers) My name is Leah May Walker and I identify as Danish on my mother's side, and Nl'akapamux and English on my father's side, with kinship ties and responsibilities at Seabird Island. My current role is as Executive Director at Kilala Lelum, an Indigenous focused wrap around health clinic in the DTE. The previous 20 years of my work was at UBC in Indigenous health curriculum development and delivery in the Faculty of Medicine. Louise Harding (she/her/hers) I am a Master’s student at UBC in public health and ethics. Previously I facilitated a mentorship program at the Urban Native Youth Association in Vancouver for two years. I am a second generation British-Canadian settler living on unceded xʷməθkʷəy̓əm (Musqueam) territory. Malcolm King (he/him/his) I am a member of the Mississaugas of the Credit First Nation. I am a health researcher at the University of Saskatchewan, the Scientific Director of the Saskatchewan Centre for Patient-Oriented Research (SCPOR), and I teach and research in Indigenous health. From 2009 to 2016, I led the CIHR Institute of Aboriginal Peoples’ Health as its Scientific Director. Miles Schaffrick (he/him/his) I am a settler of mixed German and Austrian ancestry living on the traditional and stolen lands of the xʷməθkʷəy̓əm (Musqueam), Sḵwx̱wú7mesh (Squamish), and Səl̓ílwətaɬ (Tsleil-Waututh) Nations. I am in my final-year in the Honours Political Science program at the University of 125 British Columbia. Here, my work revolves around health politics, health policy, and Indigenous health. Namaste Marsden My name is Namaste Marsden, I am a member of Gitanyow Nation, Ganeda clan and Wilp Gamlaxyeltxw. Since December 2021 I have been the Director of Indigenous Engagement in the UBC Faculty of Medicine. I am a member of national and provincial committees including the Indigenous Advisory Committee of Office of Patient Centred Measurement, and Co-Chair of the Research Ethics Advisory Council. I am a mother, sister, daughter, niece, cousin, friend, and ally. I co-lead and lead projects for increased opportunities for First Nations and Indigenous youth in post-secondary education, and advocate for increased roles of Indigenous peoples in research, ethics, governance, knowledge development and exchange, and systemic changes to address cultural safety, humility and anti-racism. My bio is here: Namaste Marsden (Co-Chair) | BC AHSN. Nel Wieman (she/her/hers) I work for the First Nations Health Authority (FNHA) in the Office of the Chief Medical Officer as the Acting Deputy Chief Medical Officer. I am Anishinaabe (Little Grand Rapids First Nation, Manitoba) and live, work and play on the unceded territory of the Coast Salish peoples – səl̓ílwətaʔɬ (Tsleil-Waututh), Sḵwx̱wú7mesh (Squamish), and xʷməθkʷəy̓əm (Musqueam) Nations. I am Canada's first female Indigenous psychiatrist, and have more than 20 years' clinical experience, working with Indigenous people in both rural/reserve and urban settings. 126 Owen B. (he/they) My name is Owen B. & I am Metis/Cree, from North Battleford, Sask. & English. I am the 2 Spirit Youth Care Counsellor & Native Youth Learning Centre & Food Pantry Manager at Urban Native Youth Association (UNYA). My educational background is in Family, Community, & Addiction Counselling/Social Work with an Indigenous focus from Native Education College & NVIT. I currently work and live on the on the traditional, ancestral and unceded territory of the Coast Salish peoples–Sḵwx̱wú7mesh (Squamish), Stó:lō and Səl̓ílwətaʔ/Selilwitulh (Tsleil-Waututh) and xʷməθkʷəy̓əm (Musqueam) Nations. Rae-Anne LeBrun (she/they) I am the Cultural Wellness Counsellor with the Urban Native Youth Association (UNYA). I am of mixed Indigenous and settler (Cree, Maltese, Prussian, and English) ancestry and reside on the traditional unceded territory of the Qayqayt people in New Westminster. Raymond Collinge (he/him/his) I’m Hungarian and Cherokee. I suffered from addiction for 30+ years and now I’m 5 years sober. Through my addiction I contracted Hep C and HIV, and I’ve also experienced my daughter’s mother overdose on fentanyl and I tried to revive her. So coming from that walk of life, my passion is in helping people on that path trying to find their way to the Red Road and to get connected to the Creator. That’s what I’ve been working on, coming up on 4 years now. 127 Roxanne Mierau (she/her/hers) Hello, my name is Roxanne Mierau. I am Sayisi Dene from treaty 5 territory and German. I'm the Health & Wellness Counsellor at Urban Native Youth Association. My education background is in Addiction Counselling. I'm a mother of three and currently work and live on the unceded Coast Salish Nations of Musqueam, Tsleil-Waututh and Squamish. Sekani Dakelth (she/her/that girl) I am a person with much lived experience and now utilize that knowledge I gained to do facilitation, consultation and valuable peer work. Sharon Jinkerson-Brass I am a member of the Key First Nation (Saskatchewan) and a Knowledge Holder. I currently live and work on Coast Salish territory (Vancouver), but maintain strong connections with my home fires. I have supported Indigenous people for over thirty years, focusing on wellness, decolonization and reconciliation. I am honoured to serve the Indigenous Wellness Research Group in the College of Medicine at the University of Saskatchewan as a Knowledge Holder, Knowledge user and community-based researcher. During my six years on the team, I have led ceremonies, shared traditional knowledge, innovated Indigenous methodologies, and been a contributor in all aspects of the research cycle. I have worked alongside many Indigenous persons living with HIV within my family, as an Elder, as a researcher and as a community support worker. I am passionate about this sector and am committed to advocating for systemic 128 change and community awareness and support. My path has led me to embrace a harm reduction, low barrier, intersectional collaborative approach to culture and ceremony. Tj Lightfoot (they/she) My name is Tj Lightfoot. I am a two spirit Mi’kmaw person originally from Elsipogtog First Nation. I live in Makkovik, Nunatsiavut which is Labrador Inuit land. I’m a facilitator and outreach worker. I have a master’s in environmental policy and undergrad in native studies and psychology. I live with an acquired brain injury and mild aphasia.
Thesis/Dissertation
eng
Population and Public Health
Vancouver : University of British Columbia Library
Attribution-NonCommercial-NoDerivatives 4.0 International
Graduate
Illes, Judy
Bringing together Indigenous and Western approaches to brain wellness and mental health : not only the what but the way
Text