Health and Social Development, Faculty of (Okanagan)
Nursing, School of (Okanagan)
DSpace
UBCO
Basil, Cara
Master of Arts - MA
University of British Columbia
Background: First Nations Peoples in Canada are the fastest growing population in the country, inherently self-determining Peoples, and yet, experience significant health inequities that impact health and healthcare service delivery such as palliative and end-of-life care. These inequities are prominent in First Nations communities and require further exploration of community-based and determined solutions. Methods: This research study, based in distinct Indigenous ways of knowing and being, sought to understand how a current volunteer model of navigation, Nav-CARE, may be adapted to or suitable for Esk̓étemc. The research was conducted with an Indigenous Research Methodology, Knucwentwécw, and guided by a Research Agreement that encompassed key principles and processes for Indigenous-led Research. Data collection occurred in Esk̓étemc through three Talking Circles. Findings: Esk̓étemc shared their stories of living with or caring for a loved one with advanced chronic illness. Through the sharing of stories, significant findings emerged that both align with and contribute to improving Indigenous palliative care practices. First, Esk̓étemc practices and protocols for caring for one another are critical to palliative and end-of-life care but remain impacted by colonial legacies. These findings emphasize the importance of traditional practices, persons remaining in community and the lack of culturally appropriate care. Second, A comprehensive, community-based and funded navigation team is necessary to support Esk̓étemc and address current gaps in care and caring for one another. This model needs to address jurisdictional barriers, healthcare standards, and patient navigation. Finally, the re-establishment of community roles and practices are essential to a community-based model of palliative care. The involvement of family and community are foundational to this community-based model. Discussion: The findings of this thesis are fundamental to and contribute to a significant area of research, as well as the topic of Indigenous-led research overall. A proposed framework is shared to support other First Nations or Indigenous Nations to embark on a similar process to uphold their sovereignty for the health and wellness of their Peoples in the context of palliative and end-of-life care. In addition, support the development of First Nations Principles or standards for palliative and end-of-life care in Canada. This research, led by Indigenous Peoples, is critical to all First Nations health governance systems transformation.
“I Wouldn’t Want to be Anywhere other than Esk̓ét”: Exploring Esk̓étemc Ways of Caring for One Another & the Nav-CARE Intervention by Cara Basil B.A., Thompson Rivers University, 2017 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF ARTS in THE COLLEGE OF GRADUATE STUDIES (Interdisciplinary Studies) (Community Engagement, Social Change and Equity) THE UNIVERSITY OF BRITISH COLUMBIA (Okanagan) April 2025 © Cara Basil & Esk̓étemc, 2025 ii The following individuals certify that they have read, and recommend to the College of Graduate Studies for acceptance, a thesis entitled: “I Wouldn’t Want to be Anywhere other than Esk̓ét”: Exploring Esk̓étemc Ways of Caring for One Another & the Nav-CARE Intervention submitted by Cara Basil in partial fulfillment of the requirements of the degree of Master of Arts. Dr. Barbara Pesut, Faculty of Health and Social Development Co-Supervisor Doreen M. Johnson, Esk̓ét Co-Supervisor Dr. Dixon Sookraj, Faculty of Health and Social Development Supervisory Committee Member Dr. Lisa Bourque-Bearskin, University of Victoria Supervisory Committee Member Dr. Peter Hutchinson, Faculty of Arts and Social Sciences University Examiner iii Abstract Background: First Nations Peoples in Canada are the fastest growing population in the country, inherently self-determining Peoples, and yet, experience significant health inequities that impact health and healthcare service delivery such as palliative and end-of-life care. These inequities are prominent in First Nations communities and require further exploration of community-based and determined solutions. Methods: This research study, based in distinct Indigenous ways of knowing and being, sought to understand how a current volunteer model of navigation, Nav-CARE, may be adapted to or suitable for Esk̓étemc. The research was conducted with an Indigenous Research Methodology, Knucwentwécw, and guided by a Research Agreement that encompassed key principles and processes for Indigenous-led Research. Data collection occurred in Esk̓étemc through three Talking Circles. Findings: Esk̓étemc shared their stories of living with or caring for a loved one with advanced chronic illness. Through the sharing of stories, significant findings emerged that both align with and contribute to improving Indigenous palliative care practices. First, Esk̓étemc practices and protocols for caring for one another are critical to palliative and end-of-life care but remain impacted by colonial legacies. These findings emphasize the importance of traditional practices, persons remaining in community and the lack of culturally appropriate care. Second, A comprehensive, community-based and funded navigation team is necessary to support Esk̓étemc and address current gaps in care and caring for one another. This model needs to address jurisdictional barriers, healthcare standards, and patient navigation. Finally, the re-establishment of community roles and practices are essential to a community-based model of palliative care. The involvement of family and community are foundational to this community-based model. iv Discussion: The findings of this thesis are fundamental to and contribute to a significant area of research, as well as the topic of Indigenous-led research overall. A proposed framework is shared to support other First Nations or Indigenous Nations to embark on a similar process to uphold their sovereignty for the health and wellness of their Peoples in the context of palliative and end-of-life care. In addition, support the development of First Nations Principles or standards for palliative and end-of-life care in Canada. This research, led by Indigenous Peoples, is critical to all First Nations health governance systems transformation. v Lay Summary First Nations Peoples have held distinct practices and beliefs for illness and at the end of life since time immemorial. First Nations communities have not been provided the necessary resources such as funding, infrastructure, and staffing to provide palliative and end-of life-care in community. The purpose of this study was to understand whether an in-community model of navigation for persons living with serious illness could improve care. Twenty-five Esk̓étemc came together to share their stories of living with advanced chronic illness or caring for a loved one with illness or at the end of life. Three Talking Circles were hosted to share stories. Through these Talking Circles, Esk̓étemc determined they would need to uphold their own ways of caring for one another and develop a funded, comprehensive, team-based model of navigation in community. vi Preface This thesis is an original, independent and unpublished work by Cara Basil. Generative AI was not used in any way for this work and the development of this thesis. This study received ethical approval from the University of British Columbia Okanagan Behavioural Research Ethics Board (#H21-00065), the Esk̓étemc Traditional Knowledge and Research Ethics Policy Committee and Esk̓étemc Chief and Council. vii Disclaimer For the purpose of this thesis, Esk̓étemc are the sole owners of the collected data. For use in other studies, please contact the Esketemc Traditional Knowledge and Research Ethics Committee for express and written permission. viii Table of Contents Abstract .......................................................................................................................................... iii Lay Summary .................................................................................................................................. v Preface............................................................................................................................................ vi Disclaimer ..................................................................................................................................... vii List of Tables ............................................................................................................................... xiv List of Figures ............................................................................................................................... xv Personal Introduction ................................................................................................................... xvi Acknowledgement ..................................................................................................................... xviii Dedication .................................................................................................................................... xix Chapter 1 Introduction .................................................................................................................... 1 Background ................................................................................................................................. 1 1.1 First Nations of British Columbia ......................................................................................... 2 1.1.1 First Nations Health Authority of British Columbia...................................................... 3 1.1.2 Holistic Perspective of Health and Wellness ................................................................. 4 1.2 Palliative Care ....................................................................................................................... 4 1.2.1 Barriers to Quality Palliative Care ................................................................................. 5 1.2.2 Public Health Approach to Palliative Care .................................................................... 5 1.3 Culturally Appropriate Palliative Care for Indigenous Peoples ........................................... 6 1.3.1 Barriers for Culturally Appropriate Palliative Care for Indigenous Peoples ................. 7 ix 1.3.2 Systemic Oppression ...................................................................................................... 7 1.3.3 Jurisdictional Disputes ................................................................................................... 8 1.3.4 Practical Challenges for Providing Palliative Care to First Nations .............................. 9 1.4 Self-Determination of Indigenous Peoples and Health Inequities ...................................... 10 1.5 Community-Driven Approach to Palliative Care ............................................................... 10 1.6 Bridging Palliative Care Gaps through Community-Based Navigation ............................. 11 Chapter 2: Literature Review ........................................................................................................ 14 Introduction ............................................................................................................................... 14 2.1 International Literature Reviews on Palliative and End-of-Life Care for Indigenous Peoples: Summaries .................................................................................................................. 15 Conclusion ............................................................................................................................ 20 2.2 Culturally Appropriate Palliative and End-of-Life Care for Indigenous Peoples............... 21 2.2.1 Heterogeneity of Indigenous Peoples .......................................................................... 22 2.2.2 A Holistic Health Perspective Versus Western Medical Models ................................ 23 2.2.3 Integrating Traditional Practices in Models of Care and Individual Preference.......... 24 2.2.4 Interpersonal Relationships .......................................................................................... 24 2.2.5 Communication ............................................................................................................ 25 2.2.6 Cultural Humility ......................................................................................................... 26 2.2.7 Role of the Family and Community and the Importance of their Involvement ........... 26 2.2.8 Education and Training ................................................................................................ 27 2.3 Barriers and Challenges to Culturally Appropriate Palliative and End-of-Life Care ......... 28 x 2.3.1 Policy and Jurisdictional Issues ................................................................................... 28 2.3.2 Day-to-Day Barriers and Challenges ........................................................................... 29 2.4 Community Engagement and Collaboration ....................................................................... 30 2.5 Innovative Strategies to Provide Culturally Appropriate Palliative and End-of-Life Care 31 2.6 Patient Navigation ............................................................................................................... 33 2.6.1 History of Patient Navigation and its Evolution .......................................................... 33 2.6.2 Patient Navigation in Canada....................................................................................... 34 2.6.3 Patient Navigation for Indigenous Peoples .................................................................. 34 2.7 Summary ............................................................................................................................. 36 Chapter 3 Methodology ................................................................................................................ 38 Introduction ............................................................................................................................... 38 3.1 Decolonization .................................................................................................................... 39 3.1.1 Decolonization Through Community-Based Research ............................................... 40 3.1.2 Indigenous Research Methodologies in Parallel with Community-Based Research Principles............................................................................................................................... 42 3.2 All My Relations ................................................................................................................. 44 3.3 Research Purpose ................................................................................................................ 44 3.4 Research questions: ............................................................................................................. 45 3.5 Esk̓étemc Advisory Committee .......................................................................................... 45 3.6 Methodological Approach: Knucwentwécw....................................................................... 47 xi 3.7 Research Partners and Participants: Esk̓étemc ................................................................... 48 3.8 Data Collection ................................................................................................................... 50 3.9 Data Analysis ...................................................................................................................... 51 3.9.1 Data Analysis Method.................................................................................................. 53 3.10 Ethical Approach .............................................................................................................. 55 3.10.1 Following OCAP Principles in our Research ............................................................ 55 3.10.2 The 4 R’s of Indigenous Research ............................................................................. 57 3.11 Knowledge Translation ..................................................................................................... 59 4.1 Talking Circle 1 .................................................................................................................. 63 4.1.1 Esk̓étemc Ways ............................................................................................................ 63 4.1.2 Colonial Legacies: Racism in Healthcare .................................................................... 65 4.1.3 Lack of Resources ........................................................................................................ 66 4.1.4 Caring for One Another: Family Roles ........................................................................ 67 4.2 Talking Circle 2 .................................................................................................................. 68 4.2.1 Esk̓étemc Ways ............................................................................................................ 69 4.2.2 Colonial Legacies: Residential School Impacts ........................................................... 69 4.2.3 Colonial Legacies: Racism in Healthcare .................................................................... 70 4.2.4 Colonial Legacies: Fear of Being Re-institutionalized ................................................ 71 4.2.5 Lack of Resources: No Off-Reserve Supports ............................................................. 71 4.2.6 Lack of Resources: Current Health Authority-based Navigator Roles are not Meeting the Needs of Esk̓étemc .......................................................................................................... 72 4.2.7 Community Vision: Community-Based Navigators .................................................... 72 xii 4.2.8 Homecare Support ....................................................................................................... 73 4.2.9 Interpreter for Medical Terms and/or English to Secwepemctsín ............................... 73 4.2.10 Navigation of the Healthcare System ........................................................................ 74 4.2.11 Afterhours Support and Respite ................................................................................. 75 4.2.12 Cultural Supports ....................................................................................................... 76 4.2.13 Friendship and Visiting .............................................................................................. 76 4.2.14 Off-Reserve Supports................................................................................................. 77 4.2.15 Paid Position .............................................................................................................. 77 4.3 Talking Circle 3 .................................................................................................................. 78 4.3.1 Community-Vision: Community-Based Navigators.................................................... 80 4.3.2 Paid Positions ............................................................................................................... 81 Chapter 5: Discussion ................................................................................................................... 85 5.1 Discussion Points Identified by Esk̓étemc Voices .............................................................. 86 5.2 Esk̓étemc practices and protocols for caring for one another are critical to palliative and end-of-life care but remain impacted by colonial legacies. ...................................................... 87 5.2.1 Importance of Traditional Practices ............................................................................. 87 5.2.2 “I Wouldn’t Want to be Anywhere Other than Esk̓ét” (2, 37-29) ............................... 88 5.2.3 Lack of Culturally Appropriate Care ........................................................................... 89 5.3 A comprehensive, community-based and funded navigation team is necessary to support Esk̓étemc and address current gaps in care and caring for one another. ................................... 89 5.3.1 Jurisdictional Barriers: Federal and Provincial Governments ..................................... 89 5.3.2 Healthcare Standards ................................................................................................... 90 xiii 5.3.3 Patient Navigation ........................................................................................................ 91 5.4 The re-establishment of community roles and practices is essential to a community-based model of palliative care. ............................................................................................................ 93 5.4.1 Importance of Family and Community Involvement................................................... 93 5.5 Limitations .......................................................................................................................... 95 5.6 Implications for Community-Based Care, Policy and Programming, and Future Research Considerations........................................................................................................................... 96 5.6.1 Community-Based Care ............................................................................................... 96 5.6.2 Policy & Programming Implications ........................................................................... 97 5.6.3 Future Research Considerations .................................................................................. 98 5.7 Conclusions ......................................................................................................................... 99 References ................................................................................................................................... 101 Appendices .................................................................................................................................. 118 Appendix A: First Nations Health Authority 7 Directives ..................................................... 118 Appendix B: Consent Form .................................................................................................... 121 Appendix C: Advertisement to Recruit................................................................................... 126 Appendix D: Research Agreement ......................................................................................... 127 xiv List of Tables Table 1 Indigenous Research Methodologies in Parallel with Community-Based Research Principles…………………………………………………………………………………42 Table 2 Data Analysis Method………………………………………………….………..53 Table 3 Following OCAP Principles………………………………………….………….55 xv List of Figures Figure 1. Relationships of our Research………………………………………………………57 Figure 2. Reciprocity in our Research………………………………………………………...59 Figure 3. Talking Circle 1…………………………………………………………………….63 Figure 4. Talking Circle 2…………………………………………………………………….68 Figure 5. Talking Circle 3…………………………………………………………………….78 xvi Personal Introduction Weyt-kp xwexwéytep, Cara Basil ren skwekwst. Te St’uxwtews re st’7e7kwen. Ne Tk’emlups re mumtwen. Elaine Basil ren kik7ece, ell le Tom Basil ren xpé7e, ell le Irene Basil (Dick) ren kyé7e. Hello all, my name is Cara Basil. I am from Bonaparte and currently live in Kamloops. My mom is Elaine Basil, my grandfather was Tom Basil, and my grandmother was Irene Basil (Dick). I identify as a Secwépemc woman from the St’uxwtews and Esk̓ét communities. Secwepemctsín (the Secwépemc Language) is my language, however, I am a learner of the language and have learned from many speakers throughout my Nation including my grandparents Tom and Irene who were both first language speakers. I also recognize Tracy Ned (Canim Lake), Marie Antoine (Bonaparte), Diane Sandy (Bonaparte), Dr. Mona Jules (Simpcw), Ted Gottfriedson (Tk’emlups), David Archie (Canoe/Dog Creek), Ethan Pincott, and many Secwépemc Peoples that I have witnessed speak the language, as my language teachers. As a Secwepemctsín learner, it is important to me to ground my research in the language. I was raised in Bonaparte and spent many years in Kamloops where my academic journey began. I was raised by my mom and grandparents and always felt a communal upbringing from Bonaparte and the significance of growing up “on-reserve.” Particularly, the culture and sense of belonging, but especially the teachings and spiritual connection I was taught by my family. As I got older, around the age of 16, my grandparents began to share their traumatic experiences of Residential School with myself and my sister which was a turning point in my journey. After learning about their experiences and the trauma they had been carrying throughout their lives, trauma that has impacted my entire family and relations, I made a decision to pursue working with and for Indigenous Peoples. I completed my Bachelor of Arts in Sociology through Thompson Rivers University in Kamloops and before completion was elected xvii to Council for Bonaparte at the age of twenty-two. With these experiences, the community-based needs within First Nations became extremely apparent and inspired me to work toward improving the health and wellness of our Peoples from within our communities. This brought me to where I am today, pursuing my Master of Arts degree in Interdisciplinary Studies through the University of British Columbia Okanagan so that I can expand my knowledge, tools, and capacity to empower Indigenous Peoples and action meaningful change in community, contributing to the health and well-being of all Peoples. As an Indigenous researcher, it is essential to follow cultural protocol and introduce myself personally. This is an act of locating myself and culturally identifying who I am, my worldview, and my unique experiences and why I am doing this work. (Kovach, 2009). This practice of protocol honors my own way of knowing and further supports relational accountability. xviii Acknowledgement This thesis and research journey was made possible by several individuals and the collective of Esk̓étemc. I would like to acknowledge Esk̓étemc Chief and Council, Esk̓étemc Elders, Knowledge Keepers, and Matriarchs for the profound support to embark on this research together. I am immeasurably grateful to each of you for trusting in me and sharing your lived experiences. Your words will remain with me always. I especially thank Charlene Belleau, Irene R. Johnson, Joyce Johnson, and Freddy Johnson for their guidance and support through the Advisory Committee and ceremony – you have given me such strength through all that you do. I would like to share a grand thank you to Doreen M. Johnson, my supervisor from Esk̓ét. You are one of the strongest people I have ever met. You are eloquent, incredibly knowledgeable, and carry many beautiful gifts that I am grateful to have witnessed over these years working together. Thank you for your guidance and your immense contributions. I have learned so much from you. To my supervisor Barb, I could not have imagined this journey without your guidance. I thank you for your gentle approach, your open mind and heart, and your brilliance that truly made a difference in my graduate experience and that I see is making a difference widely for all. You are a true leader in how you approach your supervisory role and knowledge sharing. I would also like to thank Dr. Lisa Bourque-Bearskin and Dr. Dixon Sookraj for their commitments and contributions as committee members. Thank you for your guidance and deep insight throughout my graduate degree. To my family, I am deeply grateful for your support and strength throughout my life to bring me to this significant achievement. xix Dedication I dedicate this thesis to my mom, Elaine. Mom, it is because of the many sacrifices you have made as a single mom and the cycles that you broke that I am the person I am today. You have inspired me to pursue this topic and to continue to follow this path to make a difference. Thank you for all that you have done throughout my life, I love you. 1 Chapter 1 Introduction Background Indigenous Peoples in Canada, First Nations, Inuit, and Metis are self-determining Peoples with distinct values, traditions, and practices that must be recognized (Webkamigad et al., 2020). The self-determination of Indigenous Peoples has been oppressed through a shared colonial history and colonial legacies that continue to impact health and access to health services (Tremblay, et al., 2020). Colonial legacies in Canada maintain health inequities and greater health disparities for Indigenous Peoples in comparison to the general population due to Western health models remaining dominant (Bourque Bearskin et al., 2024; Racine et al., 2020; Tremblay et al., 2020). This is a concern because the Indigenous population is the fastest growing population in the country (Funnel et al., 2020). In 2016, Indigenous Peoples accounted for 4.9% of Canada’s population and in 2021 the population grew by 9.4% to represent 5% of Canada’s population (Statistics Canada, 2020; Statistics Canada, 2022). It is estimated that the Indigenous population will age at a faster rate than the general population, and with the number of Indigenous Elders tripling by 2031, there is an urgent need for quality palliative care services for Indigenous Peoples (Funnell et al., 2020; Prince et al., 2019). Canada does not have guidelines in place to provide palliative care services to Indigenous Peoples and current healthcare services are not adequately equipped to provide culturally safe palliative care (Vincent et al., 2019). Ongoing health inequities for Indigenous Peoples cause challenges to providing culturally appropriate care including the absence of policy and guidelines, funding disputes between federal and provincial governments, and lack of community-based services in Indigenous 2 communities (Kelley et al., 2018). As we move forward in developing culturally appropriate and equitable palliative care with Indigenous peoples, it is critical that solutions are community-specific; developed in partnerships with Indigenous peoples, organizations, and government agencies; and are rooted in understanding the barriers and cultural differences or misunderstandings (Chakanyuka et al., 2022; Funnell et al., 2020; Kelley et al., 2018). 1.1 First Nations of British Columbia This study is situated within the province of British Columbia. The First Nations of British Columbia make up over 200 of the 630 unique First Nations across Canada (Government of British Columbia, 2024). First Nations of British Columbia are recognized as being one of the most diverse Indigenous populations in Canada and around the world with long-established governments, laws, and ways of life that existed pre-contact (BC Assembly of First Nations, 2014; Gallagher, 2019). There are over 30 distinct cultural groups of First Nations in BC who carry 34 First Nations languages, 90+ language dialects, and significant cultural beliefs and practices (First Peoples Cultural Council, 2025). First Nations of British Columbia experience greater disparities in health outcomes compared to the general population due to challenges with the health system and health services provided by the province and Canada (Assembly of First Nations, 2017), including palliative care services. Since time immemorial, First Nations in BC have cared for the wellness of their people throughout their life span and including death and bereavement. But, through the disruption of Indigenous systems, health disparities such as developing chronic and life-threatening illnesses, suicide rates, and death of children are disproportionately higher, and the gaps are widening, for First Nations than for other British Columbians (First Nations Health Authority & Ministry of Health, 2024; British Columbia First Nations, 2010). The 3 disproportionate development of chronic illnesses means that Indigenous persons may require supportive palliative care earlier and with greater intensity than non-Indigenous populations. In 2005, BC, Canada and political executives of the First Nations Summit, the BC Assembly of First Nations, and the Union of BC Indian Chiefs signed the Transformative Change Accord that led to actioning commitments to bridge the gaps in health outcomes for First Nations in BC leading to the development of the First Nations Health Authority (BC First Nations, 2010). 1.1.1 First Nations Health Authority of British Columbia The First Nations Health Authority (FNHA) of British Columbia was established in 2011 as a collective governing structure between BC First Nations, the province of BC, and Canada. The purpose of the FNHA is to improve the health and wellness outcomes for First Nations Peoples through their own self-determination of health services and programs that are guided by First Nations perspectives, values and principles (Gallagher, 2019). The partnership established within this health governance structure is the first of its kind in Canada. The FNHA operates with the guidance of seven First Nations-led directives, the first being “community-driven, Nation-based.” This directive reflects the health governance structure of FNHA, where programs, services, and policy development are informed at the grassroots level to ensure First Nations autonomy is not compromised (First Nations Health Authority, 2024). Through FNHA’s approach to improving the health outcomes of BC First Nations, individuals and communities have ownership over their health and wellness (Auger et al., 2016). Therefore, a key consideration in this thesis was to ensure that the research partner, Esk̓étemc, have ownership over any health and wellness initiative that arises out of this work. 4 1.1.2 Holistic Perspective of Health and Wellness For Indigenous peoples to have true ownership over their health and wellness it is essential to deliver healthcare services and programs that reflect an Indigenous worldview of health and wellness. Indigenous Peoples may not feel comfortable with healthcare approaches that are not respectful of their ways of being, knowing and doing (Bourque Bearskin et al., 2024). In the past, Western healthcare practices primarily followed a biomedical approach to caring for a patient that focused on the physical body and prescribing treatments for illness. This approach further colonized Indigenous Peoples in this dominant system of care (Greenwood et al., 2018). In contrast, an Indigenous worldview of health and wellness is holistic and considers the four dimensions of physical, mental, emotional, and spiritual health of an individual as well as the relationships that extend beyond the individual to family, community, and land (Gallagher, 2018). Similar approaches to care found in nursing are not new, but the theory and funding available to palliative care is and new models of care are evident in advancing new knowledge (Abel & Kellehear, 2016). 1.2 Palliative Care Palliative care, in a Western construct, is an approach to health care that integrates physical, psychological, social and spiritual care elements aimed at preventing and relieving suffering and improving the quality of life for people living with life-limiting illness and their families (Kelley et al., 2018; Koski et al., 2017; Nadin et al., 2018). Historical developments in palliative care have set distinct approaches for caring for people with life-limiting illness and include palliative medicine and palliative nursing, multidisciplinary teams to support social and spiritual elements of care, healthcare approaches beyond only clinical considerations, and partnerships with communities to ensure a compassionate-community approach to care (Abel & 5 Kellehear, 2016). Palliative care programs and services vary throughout the world and most countries do not have comprehensive palliative care policies or services. The World Health Organization’s approach to palliative care aims to integrate palliative care into all levels of society to address barriers in equitable service provision (Dempers & Gott, 2016). 1.2.1 Barriers to Quality Palliative Care Access to palliative and end-of-life care is limited across Canada (Funnell et al., 2020; Racine et al., 2020). Misperceptions by healthcare professionals who view palliative care as terminal care only limits those persons who might otherwise benefit from palliative care. Ideally, palliative care should be provided early on for those living with chronic and life-limiting illnesses (Gwyther et al., 2009; Kelley et al., 2018). Several challenges for providing quality palliative care exist including the older population with multiple co-morbidities, people living in remote and rural areas, specific populations such as Indigenous Peoples, and a lack of continuity of care due to limited resources (Abel & Kellehear, 2016). Significant gaps include a failure to identify individuals on a dying trajectory which results in late or no palliative care, a focus on palliative care in cancer to the exclusion of other life-limiting illnesses, an emphasis on palliative care as a place rather than a philosophy of care, and a focus on specialized palliative care rather than care that is delivered through the primary care system (Pesut et al., 2020). Over the past 25 years, there has been a call for a shift in palliative care approaches to address the barriers and gaps for providing quality palliative care programs and services and a public health approach has emerged (Koski et al., 2017). 1.2.2 Public Health Approach to Palliative Care A public health approach involves a variety of social efforts by governments, organizations, and communities that aim to protect and improve the quality of life of persons 6 living with palliative needs. This is accomplished in community by translating new knowledge and skills into evidence-based, cost-effective interventions that are accessible to all (Koski et al., 2017; Stjernswärd, 2007). Importantly, a public health approach to palliative care focuses on early intervention for those living with life-limiting illness and encompasses public education, policy development, social marketing, and environmental changes (Pesut et al., 2020). Historically, public health efforts integrated a top-down approach in which palliative care was largely seen to be the responsibility of specialized healthcare professionals. However, more recently people centric approaches that include community participation and action are recognized as crucial to increasing access and quality, ensuring success, and guaranteeing the sustainability of public health programs such as a public health approach to palliative care (Abel & Kellehear, 2016). The emergence of this public health approach to palliative care is significant for all populations and particularly aligns with the inherent Indigenous health human rights to basic health care outlined in the United Nations Declaration on the Rights of Indigenous Peoples (United Nations, 2007). It also aligns with central goals of First Nations communities because it integrates a holistic approach to palliative care that does not focus on medicalized and institution-based Western models of care (Koski et al., 2017). 1.3 Culturally Appropriate Palliative Care for Indigenous Peoples Culturally appropriate palliative care is developed in direct partnership with communities and individuals receiving care. This reflects the recognition of individual and collective self-determination to improve the quality of life for Indigenous Peoples requiring support such as palliative care. Culturally appropriate care, foremost, is best provided in and by community and includes access to family and traditional services as needed (Chakanyuka et al., 2022; Kelly et al., 2009). It is critical that individuals feel a sense of community and home when receiving care 7 and have the autonomy to identify sources of knowledge such as holistic models of care that inform their care (Hordyk et al., 2017; Vincent, 2019). Reflecting on the shared histories of Indigenous Peoples, culturally appropriate palliative care will not re-institutionalize Indigenous persons and includes respectful communication by healthcare providers (Castleden et al., 2010; Kelly et al., 2009). Overall, culturally appropriate palliative care is achieved through involvement of the family and community, education and training for Indigenous and non-Indigenous people, and resolving the day-to-day and overarching challenges that impact the delivery of culturally appropriate palliative care in community and other healthcare settings. 1.3.1 Barriers for Culturally Appropriate Palliative Care for Indigenous Peoples Prince et al. (2019) discuss that First Nations people have long-standing cultural practices surrounding caring for one another, particularly at the end of life, but that it has been disrupted by colonization and erased in the Canadian healthcare system. Canada does not have guidelines in place for providing palliative care to Indigenous Peoples, and community-based palliative care services and programs remain limited (Vincent et al., 2019). This is due to funding gaps. It is the responsibility of the federal government to fund health services in First Nations communities; funding for palliative care services is not provided to communities as part of this responsibility (Koski et al., 2017). These barriers, along with additional systematic issues, have resulted in less access to palliative care in community. 1.3.2 Systemic Oppression Indigenous Peoples have a shared colonial history that has impacted generations of First Nations, Inuit and Metis Peoples in Canada. From the time of contact, Indigenous Peoples have experienced loss of lands, forced relocation, forced removal and placement of children into Residential Schools and child welfare, and inequities of services within the reserve system. In 8 addition, day-to-day barriers and challenges that are experienced due to ongoing discrimination and racism towards Indigenous Peoples (Greenwood et al., 2018). Recent investigation into the systemic racism in British Columbia’s healthcare system has defined systemic racism and oppression as “enacted through routine and societal systems, structures and institutions such as requirements, policies, legislation and practices that perpetuate and maintain avoidable and unfair inequalities across racial groups, including the use of profiling and stereotyping” (Government of British Columbia, 2020). Canada’s colonial efforts formally oppressing Indigenous Peoples’ self-determination, have been maintained through Canadian legislation and policies such as the Indian Act of 1876, which put Indigenous Peoples are under the federal jurisdiction of the Canadian government (Schill & Caxaj, 2019). This ongoing systemic oppression has impacted the health of Indigenous Peoples; it is described as a “distal determinant of health” as it is beyond the control of individuals and communities (Czyzewski, 2011). Indigenous Peoples continue to work toward dismantling such systemic structures of oppression; however, a complex health system governed by multiple jurisdictions causes ongoing challenges (Health Canada, 2024). 1.3.3 Jurisdictional Disputes Federal, provincial, territorial, and First Nations, Metis and Inuit jurisdictions make up the health governance structure of healthcare for First Nations and Inuit Peoples in Canada. This complex system serves over 650 First Nations and Inuit communities through the federal government’s responsibility to each community for public health and prevention services, whereas physician and hospital care is provided by provincial and territorial governments (Hayward et al., 2016). The responsibility of the federal government for health services in 9 Indigenous communities does not include designated palliative care services and provincially funded palliative care services do not meet the needs of Indigenous Peoples in community or formal healthcare settings (Koski et al., 2017). Too often this leaves Indigenous people with little or no palliative care supports. Indigenous communities bear the challenge of limited healthcare services in community because of disputes between federal, provincial, and territorial governments. 1.3.4 Practical Challenges for Providing Palliative Care to First Nations The federal government’s responsibility to provide health services in First Nations has been met with several challenges related to access to palliative care programs (Kelley et al., 2018). Canada has recently developed an action plan to address the challenges for capacity and community-building models for Indigenous communities (Government of Canada, 2019). Most First Nations people report a preference to seek palliative and end-of-life care in their community as well as the opportunity to die at home (Funnell et al., 2021; Prince et al., 2019). For those who have been required to leave their community significant challenges arise such as lack of cultural sensitivity and language barriers; contrasting communication styles between patients and healthcare providers; and limited local health services, staff, and resources. (Habjan et al., 2012; Kelly et al., 2009; Kelley et al., 2018). Some communities utilize Home and Community Care Services funding provided by the federal government to support palliative care, however, the funding is limited and often cannot support extended hours of care, medical equipment and supplies, or healthcare staff trained to provide palliative and end-of-life care (Nadin et al., 2018). Today, First Nations are advocating for community-driven approaches to palliative and end-of life-care to bridge these gaps (Prince et al., 2018). 10 1.4 Self-Determination of Indigenous Peoples and Health Inequities Self-determination of Indigenous Peoples is well-established beyond Canadian rule or legislation and is understood as the individual and collective Indigenous right to have control and decision-making authority over health and all other systems (Auger et al., 2016; Morgan et al., 2019). As previously discussed, this self-determination has been oppressed through Canadian laws and legislation that unjustly claim jurisdiction over Indigenous Peoples. The lack of recognition of Indigenous Peoples’ self-determination has been interconnected to the health disparities among Indigenous Peoples because of the limited autonomy to address unique health needs (Adelson, 2005). Self-determination is essential to improving the health outcomes for Indigenous Peoples as well as how we proceed in addressing contemporary health inequities through an Indigenous perspective (Adelson, 2005; Czyzewski, 2011). Recognition and reconciliation of inherent right to self-determination of all Indigenous Nations is critical to conducting research in partnership with Indigenous Peoples where there is meaningful involvement in all research stages (Funnell et al., 2020). This meaningful involvement is discussed in greater detail in the methods section of this thesis. Self-determination is relevant in this discussion because First Nations must have autonomy and decision-making over their own health needs, especially in relation to caring for one another during end-of-life practices. Communities must lead Indigenous-specific palliative care approaches to end-of-life care (Prince et al., 2019). 1.5 Community-Driven Approach to Palliative Care Indigenous-led health research and interventions are expanding throughout the health landscape generating new health knowledge. In order to address the issues of colonialism and self-determination discussed previously, research must be guided by the co-construction of 11 initiatives between the researcher and community and focus on strengthening the relationships between all involved (Hayward et al., 2016). Recent innovations in Indigenous palliative care research have focused on both community and institutional settings to initiate culturally appropriate changes that would integrate the family and community into the experience and allow for individuals to remain in their communities (Galloway et al., 2020; Nelson et al., 2024). Community-driven interventions that have been developed have occurred through community workshops, pilot programs, and engagement with community Elders, leadership, community healthcare providers, and community members. These initiatives have resulted in 24/7 palliative care and support, collaborative care planning between partners, ongoing communication about care issues, and involvement of the family in all aspects of palliative care (Koski et al., 2017; Nadin et al., 2018). Importantly, these community-driven interventions reflect what constitutes culturally appropriate care and especially in this context, culturally appropriate and responsive palliative care. 1.6 Bridging Palliative Care Gaps through Community-Based Navigation It is evident that Indigenous Peoples experience greater health disparities than the general population and chronic illnesses such as arthritis, hypertension, cardiovascular disease, and cancer are much more prevalent among Indigenous persons, especially those living in remote communities (Habjan et al., 2012). Current palliative care services and programs in Canada are hospital-based and provincially organized and do not align with the values or holistic health perspective of Indigenous Peoples (Johnston et al., 2013) or essential legislative requirements. First Nations in British Columbia must often rely on the mainstream health system that contributes to poor health outcomes and to address these gaps, a relational and engaged approach is critical (Gallagher, 2019). The First Nations Health Authority is providing alternate 12 approaches through financial supports that can bring services to communities through the home and community care office (First Nations Health Authority, 2024). The public health approach to palliative care, as discussed previously, focuses on early intervention and community involvement. Dempers & Gott (2016) found that there were various conceptual underpinnings to a public health approach including the importance of community and promoting the use of community as providers of care over the further development of formal services. One innovative public health approach to palliative care that encompasses the importance of community is the Nav-CARE (Navigation: connecting, accessing, resourcing, engaging) program that provides early palliative support in rural communities through volunteer navigators (Pesut et al., 2017). Nav-CARE volunteers support older adults living with advanced chronic illnesses and includes home visits, navigational activities such as decision-making and advance care planning, locating resources and assisting with those resources, and supporting client engagement with desired activities (Pesut et al., 2020). Nav-CARE is a family centered intervention that focuses on improving quality of life through creating connections, supporting independence, and fostering a culturally safe, palliative approach to care Current Indigenous navigation programs in British Columbia do not extend beyond institutional settings but have been proven as an essential strategy to support Indigenous patients and their families to navigate the healthcare system as well as building a culturally competent healthcare institution (Rankin et al., 2022). A recent study by Falk (2019) explored the perspectives of Aboriginal Patient Liaisons/Navigators (APL/N) in British Columbia to understand what supported or hindered palliative care and culturally safe palliative care for First Nations people. The findings of this study discuss considerable challenges in coordinating 13 palliative care services between First Nations patients in healthcare institutions and their communities. Challenges include the varying levels of programs and supports provided in communities, healthcare providers communication with communities when APL/N’s are away, and cross-jurisdictional coverage for First Nations patients that APL/N’s may not have direct contact with to support the patient to navigate through (Falk, 2019). Though the Aboriginal Patient Navigator/Liaison program is an essential strategy in healthcare settings, the findings indicate there are significant community-based gaps. Community-based navigation, such as the Nav-CARE program, may be a promising approach to bridging the gaps for First Nations, and Indigenous Peoples collectively, to receive culturally appropriate palliative care and improve health outcomes for those living with advanced chronic illnesses. Nav-CARE not only builds individual capacity but community capacity as well through the volunteer navigation structure that identifies gaps in community care (Pesut et al., 2017). It is evident that Nav-CARE achieves a public health approach to palliative care. This approach then aligns with a First Nations’ perspective of health and wellness that is relational and holistic among individuals and communities altogether because the community has ownership of their health and wellness. However, in keeping with principles of collaboration and self-determination it is vital to determine whether a program such as Nav-CARE is a good fit with Indigenous ways of being. Therefore, the purpose of this thesis is twofold: (1) to describe community-specific and community-based practices that Esk̓étemc use to care for one another through the palliative care journey and (2) to determine whether a volunteer-led program such as Nav-CARE would be a feasible and acceptable strategy for enhancing the capacity of Esk̓étemc to care for one another in community. 14 Chapter 2: Literature Review Introduction This literature review provides an overview of four reviews on palliative and end-of-life care for Indigenous Peoples in countries including Canada, the United States, New Zealand, and Australia. Eligibility criteria for the first section of review summaries was that the reviews were conducted in the past six years. The summary of these reviews provides the foundation for the next section, a review of the current evidence of culturally appropriate palliative and end-of-life care for Indigenous Peoples in Turtle Island, otherwise known as North America. Studies were examined to describe the common themes that support a framework for culturally appropriate palliative and end-of-life care for Indigenous Peoples. The common themes include: the role of the family and community and the importance of their involvement; holistic health perspectives of Indigenous Peoples with two subthemes of integrating traditional healing practices in models of care and respecting patient autonomy and decision-making; interpersonal relationships with two subthemes of communication and cultural humility, education and training, barriers and challenges to care; and community engagement and collaboration. Though many of these themes were identified in the summary of reviews, they are included to ensure they are examined from a Secwépemc lens, from the context of First Nations of Turtle Island, and the interconnectedness of themes and subthemes not found in the reviews. Additionally, studies that are older than six years old are included due to the growing nature of this research topic. Next, innovative and evidence-based strategies that are community-engaged and community-based are included to understand how the needs of Indigenous Peoples’ palliative and end-of-life care are met in both community and institutional settings. Finally, the evidence around patient navigation is introduced to examine if it is a culturally appropriate intervention for 15 Indigenous communities. The history and purpose of patient navigation is discussed and followed by discussing the Canadian experience of implementing patient navigation models. This is narrowed further to discuss the evidence on patient navigation models with Indigenous Peoples. 2.1 International Literature Reviews on Palliative and End-of-Life Care for Indigenous Peoples: Summaries The needs of Indigenous Peoples for culturally appropriate palliative and end-of-life care are unique. Studies have been conducted in various countries to determine what culturally appropriate palliative and end-of-life care means to Indigenous Peoples. Some researchers have reviewed these studies collectively and produced literature reviews that address common themes, challenges, barriers, and preferences for consideration in developing palliative and end-of-life care initiatives with Indigenous Peoples. The four most recent literature reviews that focus on Indigenous palliative and end-of-life care will be summarized to understand what is known of culturally appropriate palliative care internationally. Isaacson and Lynch (2018) conducted an integrative review of seventeen eligible articles to determine the current scientific evidence on culturally appropriate palliative and end-of-life care options for Indigenous persons in the United States. The seventeen articles reviewed resulted in four common findings to describe culturally relevant palliative and end-of-life care for US Indigenous populations. A key finding was how communication styles and practices between health care professionals and American Indians needed improvement. Culturally appropriate communication was described as understanding communication styles, considerate delivery of diagnoses, use of appropriate terminology, opportunity for questions and reflection, and interpreter services. Several studies highlight family involvement is common in end-of-life 16 discussions, decisions, and advanced care planning but that it is important to respect the autonomy of the patient and their preference for family involvement. Trust and respect were described as a component of communication that takes considerable time to develop through building relationships with patients and their families. Two of the studies highlight that mistrust, a subtheme of barriers, is prominent in palliative and end-of-life care for Indigenous populations in the US due to historical injustices, colonization practices and discrimination that correlate to insufficient funding and funding arrangements, access to quality care, and perceptions of negative treatment by healthcare providers. Cultural awareness and sensitivity were described as recognizing the heterogeneity of Indigenous Peoples, entering each interaction with empathy, compassion and patience, and considerate questions that were identified from the studies. Three studies also suggest the need for cultural sensitivity training for healthcare professionals. Isaacson and Lynch review (2018) describe community guidance for palliative and end-of-life care programs included developing partnerships with the community and engaging community members who determined cultural components for individual programs. Several of the studies state that a pan-Indigenous approach cannot be taken to develop palliative or end-of life-care programs for American Indians and that programs may include cultural components that are unique to tribes alongside Western medicine, beliefs, and practices. Three studies discuss cultural implications for those who live in remote areas and solutions to support families to remain at home such as training and additional supports (DeCourtney et al., 2003; DeCourtney et al., 2010; Schrader et al., 2009). Collaborative efforts were also described in several of the studies such as collaborative relationships, community advisory boards, partnering with existing tribal programs or agencies, and training for community members to take on caring roles alongside medical and technical support. Isaacson and Lynch (2018) describe the barriers 17 Indigenous Peoples experience in the US such as insurance coverage and Medicare Hospice eligibility requirements that do not allow for adequate relationship building with patients (p.8). Several studies describe challenges for rural and remote regions such as staffing and particularly access to palliative and EOL services specific to clinical services (Finke et al., 2004). Shahid et al. (2018) examined thirty-nine articles to conduct a comprehensive review on culturally appropriate palliative care service delivery to Indigenous Peoples in Australia, New Zealand, Canada and the United States. The purpose of the review was to compare the preferences, needs, opportunities, and barriers across Indigenous populations in the four countries. In each of the countries, collaboration and engagement with family and community was identified as a need for service design and delivery. Many of the studies examined were conducted in rural or remote locations that resulted in a need for service delivery considerations such as communication, policy change, staffing supports, and overall improvements for how care is provided (Shahid, et al., 2018). Another prominent theme was the need for education for patients, family, and community and culturally appropriate service delivery training for health care providers. The preference to die at home, conduct ceremony, and have family involvement in various aspects of care and at the end of life was consistent across the Indigenous populations in each country. Two studies also describe access to Indigenous staff as a preference (Davidson et al., 2013; Kelly and Minty, 2007). The literature review identified several common barriers and some that are specific to only some of the countries explored. The common barriers include challenges to access services for rural and remote areas, culturally appropriate service delivery such as communication, and cultural influences such as cross-cultural understandings of palliative care (Shahid et al., 2018). One barrier that was described and only found in studies conducted in the US was policy such as 18 hospital policies that restrict preferences for family involvement. Shahid et al. (2018) describes the opportunities for implementing Indigenous palliative care service delivery in healthcare settings including hospitals such as education and training for healthcare providers, peer teaching approaches, culturally appropriate curriculum, and service models such as Patient Navigators (p.14). Patient Navigators, alongside other models, were also described in several studies as positive innovations and models of care in rural and remote communities. Shahid et al. (2018) also describes the importance of community engagement, culturally safe service delivery strategy, flexible organization/program structure, and patient-centered care as critical elements to provide palliative care to Indigenous Peoples. Caxaj and Schill (2019) conducted a scoping review to provide a deepened understanding of culturally safe approaches to palliative care within rural and small-town settings in Canada. Twenty-two articles were examined including peer-reviewed and grey literature from Canada, US, New Zealand and Australia. The result of the study is a list of components of a culturally safe, palliative approach to care for Indigenous Peoples living in rural communities. Several articles describe models of care that demonstrate symbolic or small gestures such as Indigenizing spaces, including local foods on menus and respect of spirituality (p. 6). Indigenous palliative care service provision is also described to include healthcare providers anticipating barriers to care and deferring to the patient, family, and community to honour cultural beliefs, Indigenous medicinal practices, preferences for one’s end of life, and distinct service delivery models (Caxaj and Schill, 2019). Family involvement is also discussed as a part of a culturally safe palliative approach such as shared decision-making and active patient and family involvement. Respectful, clear, and culturally appropriate communication was highlighted and may include adhering to principles of cultural safety (p. 7). Caxaj and Schill (2019) describe the importance of palliative 19 care approaches that empower cultural identity, knowledge, and traditions and policies that reflect cultural values, recognition of the family role, shared decision-making, and community-based funding. The scoping review results emphasized the importance of understanding the nuances between cultural safety and cultural competency and ensuring distinctions-based approaches are implemented to honour the uniqueness of each Indigenous community. The most recent review was an integrative review conducted by Racine et al. (2022). The integrative review synthesized twenty-four studies that focused on the needs and challenges of Indigenous Peoples’ accessibility to palliative care in rural and remote settings. Among the eligible literature, there were twelve qualitative studies, four quantitative studies and eight systematic reviews. The authors describe “good palliative care” as a holistic journey encompassing multi-faceted dimensions of spirituality so that Indigenous persons can prepare for their end-of-life journey (p. 14). Three studies describe the heterogeneity of Indigenous Peoples including mixed beliefs. Several studies focus on spiritual, emotional, and physical needs and how Indigenous and Western practices are both important in caring for Indigenous persons at the end of life but cultural beliefs on death and dying is essential. The authors further highlight the importance of connection to land, that encompasses spiritual practices, ceremony, and diverse preferences for place of death. Accessibility, trust, and community-based services and supports all contribute to one’s place of death, whether by preference or not (p.15). Racine et al. (2022) describe culturally responsive care including cultural competency, cultural safety, and family engagement. Interpersonal communications, integration of Indigenous values, patient autonomy, and family involvement in decision-making are presented as aspects of culturally responsive care. The review states that “culturally responsive palliative care moves beyond the satisfaction of physical needs to capture the psychological, emotional and spiritual 20 dimensions of care” (p. 16). Several institutional and systemic barriers exist to culturally responsive palliative care. Institutional barriers such as Western biomedical approaches and perspectives are described as dominant. One study by Simpson et al. (2016) identifies how healthcare providers, in collaboration with Indigenous Peoples, need to develop education material about palliative care. Systemic barriers are described as health and social policies that directly or indirectly perpetuate racial and cultural discrimination (p. 16). Racine et al. (2022) describe ways to address the institutional and systemic barriers, including cultural competency and safety training, racist-free care, community-based care, and collaborations and partnerships. The review concludes with the importance of decolonizing palliative care, including personal biases and settler colonial impacts to facilitate multidisciplinary and intersectoral collaborations for culturally appropriate palliative care for Indigenous Peoples. Conclusion The four literature reviews included analysed Indigenous palliative and end-of-life care research conducted in Canada, the United States, New Zealand, and Australia. Many of the studies reviewed were qualitative studies and they found that all Indigenous communities are diverse, thus emphasizing that approaches to Indigenous palliative and end-of-life care cannot be generalized to a one-size-fits-all model. The common findings across the four reviews are: 1) culturally appropriate care must be inclusive of interpersonal communication, family and community involvement, respect of patients autonomy, integrate Indigenous practices and beliefs, shared-decision making and honour the diversity of Indigenous Peoples and 2) the extensive barriers to culturally appropriate palliative care include issues with trust, access, service design and delivery, cross-cultural understanding, systemic and institutional practices or policies, and rural and remote services. The common themes of these reviews have provided a 21 framework for what constitutes culturally appropriate palliative and end-of-life care for Indigenous Peoples internationally. In the next section, these themes will be expanded further, and I will also introduce themes found in independent studies that were not identified through the literature reviews. 2.2 Culturally Appropriate Palliative and End-of-Life Care for Indigenous Peoples The needs of Indigenous Peoples for palliative and end-of-life care, as discussed in the literature, will vary by Indigenous community. Recent findings suggest symbolic or small gestures that do not generalize across Indigenous Peoples are essential in culturally appropriate palliative and end-of-life care (Schill & Caxaj, 2019). The literature does highlight what may constitute culturally appropriate palliative and end-of-life care for Indigenous Peoples and the needs that will inform such care. This includes: anticipating barriers of care; honoring a patient’s wishes at the end of life; incorporating shared decision making with family and community; recognizing community ownership of services; empowering cultural identity, knowledge, and traditions; and improving culturally appropriate and informed health care policy (Schill & Caxaj, 2019). The literature findings indicate that culturally appropriate end-of-life care does not re-institutionalize Indigenous Peoples, as relocation for Indigenous Peoples is a frightening experience due to Residential School experiences, and there is often a preference to remain in community or at home. (Castleden et al., 2010; Galloway et al., 2020). Some of the studies found that for Indigenous Peoples living in rural or remote communities, culturally appropriate care was best provided in the community. This improved access to family and traditional services if requested and communication strategies that involved respectful and open conversations, which may include cultural safety training for healthcare providers that is developed with local Elders (Fruch et al., 2016; Kelly, et al., 2009; Schill & 22 Caxaj, 2019). This was emphasized further in findings that cited the importance of community and sense of home for appropriate end-of-life care (Vincent, 2019). Other authors such as Hordyk, et.al (2007), also indicated that inviting communities to identify sources of knowledge that inform their end-of-life care is essential. This will vary between communities but there are overarching, common themes throughout the findings that create a framework for culturally appropriate palliative and end-of-life care for Indigenous Peoples that will be discussed further. 2.2.1 Heterogeneity of Indigenous Peoples Palliative care and end-of-life studies that have been conducted often situate the research by providing background of the shared common histories of colonialism and its ongoing impacts that have caused generalizations and assumptions of vast similarities across Indigenous communities (Castleden et al., 2010; Prince et al., 2019; Koski et al., 2017). One study conducted in Ontario with 13 First Nations communities found that First Nations diverse cultural values, beliefs and practices are not reflected in healthcare services and programs provided to First Nations communities (Habjan et al., 2010). Similarly, a study conducted in the United States found that a critical component of culturally appropriate palliative care for American Indians was cultural awareness and sensitivity from healthcare providers which begins with understanding the uniqueness of each Indigenous group’s beliefs (Isaacson & Lynch, 2018). Anderson and Woticky (2018) highlight that Indigenous Peoples are heterogeneous Peoples but they do share commonalities regarding spirituality and perceptions of the end of life. In another study conducted in 4 First Nations communities in Canada, healthcare providers indicated that they could better serve their patients and family members if they were more knowledgeable about the different community beliefs and practices (Prince et al., 2019). 23 Kelly and Minty (2007) conducted a literature review that found that traditional perspectives represented a common theme in each of the studies reviewed; however, some Indigenous patients and communities will not want cultural beliefs or practices incorporated into their healthcare. One study of Alaska Native peoples found that the community mixed traditional and Christian practices, in relation to, was brought to the community through contact by missionaries (DeCourtney et al., 2010). Hordyk et al. (2017) contend that caregiving traditions of Inuit Peoples were disrupted due to contact with European settlers that wiped out entire families and clans through epidemics and the removal of children into Residential Schools. Traditional caregiving practices remain evident today, however, in other regions such as the Kootenay region in British Columbia, but spiritual practices may not be evident to healthcare providers due to negative colonial policies and generalizations of spiritual practices among Indigenous Peoples (Castleden et al., 2010; Hordyk et al., 2017). Colclough and Brown (2019) also found that contemporary beliefs regarding end of life and death are becoming an “individual opinion” but traditionally it was openly talked about. These studies indicate that Indigenous Peoples cannot be treated as homogeneous, and it is important to understand the unique and distinct knowledge, capabilities and practices and beliefs across individuals and communities. 2.2.2 A Holistic Health Perspective Versus Western Medical Models Seow et al. (2024) found that palliative care needs to include and address mental, spiritual, emotional and physical wellness, creating a holistic approach with these elements. Vincent et al. (2019) also found that a holistic approach to care is important in providing culturally appropriate care. The holistic health perspective differs from a Western health perspective and provides care beyond physicians’ care and what is typically found in institutionalized settings (Prince et al., 2019). 24 The Western perspective is described as medicalized, institution-based and individualized care versus the finding of Indigenous perspectives that emphasize the collective (Koski et al., 2017; Prince, et al., 2019). Hampton et al. (2010) found that the differences between Western medical models and Indigenous cultures produce challenges in providing culturally appropriate palliative and end-of-life care for Indigenous Peoples. Two studies found that healthcare is most often delivered in Western healthcare environments that are not designed with sensitivity to cultural differences (Bellamy & Gott, 2013; Castleden et al., 2010). Another study found that some Indigenous groups felt that colonial practices remained in healthcare service delivery (Hordyk et al., 2017). 2.2.3 Integrating Traditional Practices in Models of Care and Individual Preference Kelley et al. (2018) found that cultural values, beliefs, and traditions are important at the end of life for Indigenous Peoples. This includes passing on traditions, sharing stories, psychological and spiritual support, social processes and participating in traditional ceremonies (p. 59). One study conducted in Canada with Innu Peoples found that it is important to discuss cultural practices to ensure healthcare providers and family are aligned with an individual’s wishes (Dawe et al., 2024). Similarly, Bellamy and Gott (2013) found that integrating traditional practices and culture is important but there must also be a focus on an individual’s preference. Alternatively, DeCourtney et al. (2010) explored developing palliative care programs with Alaska Native Peoples and found that some Alaska Native people mix traditional and Christian practices at the end of life while others disregarded traditional practices altogether. 2.2.4 Interpersonal Relationships The significance of interpersonal relationships is identified in several studies. DeCourtney and Morgan (2010) found that relationships with Indigenous Peoples are important 25 and should be gently approached by community visitors. Kelley et al. (2018) found that healthcare providers who work in community are more likely to have built close interpersonal relationships with community members as opposed to external healthcare providers that lack interpersonal relationships. Hordyk et al. (2017) describe relationship building with community and healthcare providers will take considerable time and particularly time spent in community. Spending time in community is important to building interpersonal relationships with communities alongside two common themes that support building these interpersonal relationships: communication and cultural humility. 2.2.5 Communication Dawe et al. (2024) describe how open communication in relation to cultural practices and in discussions with Elders and decision-makers improves the quality of care experienced. Communication challenges included health service providers failing to listen or respond to a patient’s symptoms, translation, understanding complicated or difficult diagnoses or information, and misuse of translators (Galloway et al., 2020). Another study found that culturally appropriate communication is respectful, clear, and demonstrated at both the individual and institutional level (Schill & Caxaj, 2019). Some studies identified the critical role of medical interpreters and journey mapping. Vincent et al. (2019) reported that medical interpreters were essential to support culturally appropriate palliative and end-of-life care for Indigenous Peoples. Medical interpreters may assist by providing contextual factors, filling knowledge gaps, and applying their skills to translate difficult conversations (Hordyk et al., 2017; Vincent et al., 2019). Koski et al. (2017) found that journey mapping, a process to develop palliative care pathways, supported an increase in communication between the community and healthcare providers because the healthcare 26 providers were willing to listen to community members and sought to understand each community’s unique cultures and barriers to accessing care. 2.2.6 Cultural Humility DeCourtney and Morgan (2010) describe cultural humility as setting aside one’s own beliefs and seeking to understand those of another. Bellamy and Gott (2013) found that the awareness of cultural differences, an element of cultural humility, can shift power imbalances between healthcare providers, patients, and their families. Some Elders perspectives discussed by Habjan et al. (2012) suggest that healthcare facilities outside of community lack cultural sensitivity, another element of cultural humility, and that community-based care facilities are a promising method to bridge cultural gaps for individuals and their families. Hordyk et al. (2017) found that prior trustful relationships that include open communication and cultural humility were key to success in end-of-life care and decision-making with Indigenous patients and their families (Hordyk et al., 2017). 2.2.7 Role of the Family and Community and the Importance of their Involvement Several authors discuss the involvement of the family as critical in culturally appropriate end-of-life care both within and outside of community. Nelson et al. (2024) highlight two important themes regarding the role of family and community. The first theme is that family is the utmost priority, and the second is that end-of-life care is a community-wide effort (p. 6). Hampton et al. (2010) also found that traditionally many people would be involved at a person’s end of life to support them and their family. The role of the family is an important finding of many studies as it is seen as fundamental to the provision of palliative or end-of-life care for Indigenous Peoples as family members take on a wide range of caring tasks (Bellamy & Gott, 2013; Gott et al., 2018). 27 The family performs several critical roles in palliative and end-of-life care. Angelo and Wilson (2019) found that caring tasks taken on by the family may include food preparation, spiritual practices, visitor gatekeeping, providing direct personal care, and negotiating the location for care delivery. DeCourtney et al. (2010) found that the role of the family extends beyond these caring tasks to bridging traditional and modern caregiving practices. Another study identified an important role of the family is their involvement in decision-making (Vincent et al., 2019). This finding was supported by Schill and Caxaj (2019) who added that the family and community are equal partners with healthcare providers in decision-making so that a patient’s wishes are honored at the end of life. Another study that was conducted to understand the priorities of culturally appropriate palliative and end-of-life care found that the family often takes on the role of main carer and in institutional settings; thus it is important to provide the family with appropriate support and education so that the needs of the patient and family may be met (Bellamy & Gott, 2013). 2.2.8 Education and Training Many of the studies reviewed identified the need for education and training for both Indigenous Peoples and non-Indigenous healthcare providers (Castleden et al., 2010; Decourtney et al., 2010; Habjan et al., 2012; Hampton et al., 2010; Hordyk et al., 2017; Prince et al., 2019; Vincent et al., 2019). Habjan et al. (2012) findings, in their study with Indigenous Peoples, identified education and training needs specific to understanding a person’s illness, training to do special procedures, use special equipment, home support, palliative care, and psychological support to maintain collective wellness. DeCourtney et al. (2010) found that families also need education in navigating the extensive paperwork tasks that must be completed as part of their supportive role. 28 Education and training for healthcare providers is essential to support Indigenous Peoples at the end of life (Hampton et al., 2010). Hordyk et al. (2017) found that this training should focus on cross-cultural understandings of the historical, social, and cultural realities of Indigenous Peoples. Dawe et al. (2024) further found that cultural training is fundamental, but it is not being provided adequately through immersive training in the community. Prince et al. (2019) compiled a list of recommendations for both internal and external healthcare providers education and training components. The findings point to cultural training as a necessary element identified for providing culturally safe end-of-life care (Castleden, et al., 2010). 2.3 Barriers and Challenges to Culturally Appropriate Palliative and End-of-Life Care The literature reviews examined in the previous section highlighted many barriers and challenges to palliative and end-of-life care for Indigenous Peoples. The studies included in this section describe similar barriers and challenges and others that were not identified or did not have fulsome discussion in the literature reviews. 2.3.1 Policy and Jurisdictional Issues The lack of culturally appropriate palliative and end-of-life care in Indigenous communities and institutional settings is related to gaps in policy and jurisdictional issues. This has been a common theme particularly in Canada. Nadin et al. (2017) found that the policy gaps and ongoing disputes between federal and provincial governments in Canada are barriers to the provision of health services including community-based palliative care for Indigenous Peoples. Castleden et al. (2010) also found that there is no Canadian standard for Indigenous palliative care which results in ongoing challenges for Indigenous Peoples who must access the same care as the general population. In a provincial context, policy gaps and lack of representation of Indigenous Peoples in health governance structures are evident due to provincial mandates 29 (Dawe et al., 2024). Hampton et al. (2010) describe culturally appropriate care requires restructuring current policies and procedures in facilities and other local systems, however, the policy gaps in community-based care is particularly challenging. Kelley et al (2018) present both social and funding policies as challenges. The authors found that the care services funded by the federal government do not include palliative care in community, and they are limited by the types of supports available. Moreover, care services are not offered beyond work hours, and are limited to only weekly or monthly visits from physicians. Some authors have provided recommendations from community participants to address the social and funding policy gaps. The recommendations include developing cross-cultural policies in healthcare systems and developing funding formulas that are needs-based rather than being based on the number of people living in the community (Hampton et al., 2010; Habjan et al., 2012). One study by Nadin et al. (2017) recommended that communities overcome policy and jurisdictional barriers by integrating federal and provincial health services to provide culturally appropriate palliative care to address policy gaps; however, there are other significant barriers and challenges that result from these policy gaps. 2.3.2 Day-to-Day Barriers and Challenges Indigenous Peoples face significant barriers and challenges when required to access palliative and end-of-life care. Castleden et al. (2010) found that access is a challenge in both rural and urban settings due to lack of resources in communities and lack of programs developed with cultural guidelines in facilities. Habjan et al. (2012) identified four categories of barriers: barriers related to geography and availability of services, economic barriers, systemic barriers, and barriers related to the specific needs of the Indigenous population. Other challenges to culturally appropriate care identified in these studies include lack of infrastructure, lack of family 30 caregivers, other practical obstacles such as equipment, power supplies, transportation, and distance to healthcare services (Habjan, et al., 2012; Isaacson, et al., 2015). These findings especially highlight the extensive challenges for communities where there are limited or strained end-of-life resources. This means that Indigenous persons must travel to places for care where there are limited cultural understandings resulting in limited access to culturally safe care (Galloway et al., 2020; Habjan, et al., 2012). Vincent et al. (2019) found that all Indigenous communities have extremely limited healthcare resources. Habjan et al. (2012) found that a lack of family caregivers in the community presents additional challenges due to young people leaving community for work and school. This results in a greater dependence on paid healthcare workers, but these healthcare providers often face language barriers and cross-cultural misunderstandings (p. 217). Isaacson et al. (2015) discuss similar findings around misconceptions between healthcare providers and Indigenous patients and their families. Koski et al. (2017) share important findings regarding the approach to develop culturally appropriate palliative and end-of-life care and state that certain approaches act as barriers alone. To address these varying challenges, the solutions must be community specific (Kelley et al., 2018). 2.4 Community Engagement and Collaboration The studies reviewed indicate that development of culturally appropriate palliative and end-of-life care for Indigenous Peoples will require community-based approaches (Hordyk et al., 2017; Nadin et al., 2017; Prince et al., 2019; Vincent et al., 2019). Researchers and practitioners use diverse approaches to engage communities. Participatory Action Research (PAR) was found to be an appropriate research methodology when working with Indigenous Peoples because all aspects of the research and actions are controlled by the community (Prince et al., 2019). 31 Another approach that was adapted successfully was journey mapping because it is a comprehensive process with community participants (Nadin et al., 2017). A study conducted with Inuit Peoples suggested that due to disruption in traditional practices, existing healthcare structures are responsible to support Indigenous communities to revitalize Indigenous knowledges in healthcare settings (Hordyk et al., 2017). Nadin et al. (2017) found that when developing culturally appropriate palliative and end-of-life care for Indigenous Peoples, it must be done in partnership with Indigenous controlled health services. Vincent et al. (2019) added that palliative care program development should use a strength-based approach that meets the individual’s needs in rural communities (p. 165). Thus, there is evidence of some innovative strategies to develop and provide culturally appropriate palliative and end-of-life care that are community-based. 2.5 Innovative Strategies to Provide Culturally Appropriate Palliative and End-of-Life Care Several studies identified as part of this review described innovative strategies to implement culturally appropriate palliative care in Indigenous communities (Castleden et al., 2010; Dawe et al., 2024; Galloway et al., 2020; Isaacson et al., 2015) Castleden et al. (2010) suggest that an important strategy is to allocate resources that will support the suggestions of Elders and Indigenous research participants to implement culturally significant palliative care approaches. Two of the studies reviewed found that innovative strategies within institutional settings include having larger and dedicated spaces for Indigenous families and patients, language translators, community-based care, Indigenous-led and advised policies and regulations, and land-based methods of healing such as traditional foods (Dawe et al., 2024; Galloway et al., 2020). 32 Other studies highlight culturally appropriate care strategies related to innovative community-based programs (Koski et al., 2017; Nadin et al., 2018). Most Indigenous Peoples living in remote communities have a preference to die at home which would require specific supports and services. One innovative strategy that was found to facilitate supports and services in community, as mentioned previous, is journey mapping. Koski et al. (2017) used Journey Mapping in their study; it is a community-engaged process to outline a community’s vision for change through engaging community members and healthcare providers. The community gathers in workshops to discuss the journey for community members when they require palliative care. Through the process, they identify areas for improving communication and service integration, barriers to service integration, and strategies to overcome obstacles. The findings exemplify how these processes are the most successful to achieve culturally appropriate end-of-life care. Nadin et al. (2018) implemented a pilot program in Naotkamegwanning First Nation in Canada. This project met the goal of enhancing and integrating existing services so that community members could receive palliative care at home. It was successful in several areas such as implementing 24/7 care and support, client screening for eligibility of palliative care at home, collaborative care planning between partners, ongoing communication in the circle of care, and involving the client and their family throughout this palliative care model. Rather than focusing on the lack of resources in community, the study focused on the strengths of the community to develop and provide culturally appropriate end-of-life care (Nadin, et al., 2018). The innovative strategies of these studies are moving toward strength-based approaches to meet the needs of Indigenous communities palliative and end-of-life care as it continues to evolve. One intervention that is yet to be explored fully is Indigenous patient navigation. 33 2.6 Patient Navigation Patient navigation will be discussed broadly from a historical perspective to understand how it has evolved. It will also be discussed in the context of Canada to introduce how it has been integrated into healthcare for all Canadians and particularly Indigenous Peoples in Canada. 2.6.1 History of Patient Navigation and its Evolution The literature of patient navigation originated in the United States. Schwaderer and Itano (2007) discuss patient navigation as a program to address health disparities in the United States and found that health disparities have been prominent among ethnic minorities due to lower socioeconomic status, cultural beliefs, social inequity, poverty, and a lack of health insurance. Patient navigation was introduced by Harold Freeman MD, a breast cancer surgeon who found that young African American women were being diagnosed at late stage of cancer and sought to address the health disparities experienced when accessing care. It was found that the role of the patient navigator originated to assist patients through their cancer journeys but has expanded to meet the needs of various populations’ healthcare needs across many countries (Valaitis et al., 2017). Schwaderer and Itano (2007) found that at its onset, a patient navigator would support patients with technical processes such as health insurance and overcoming barriers to access care. Valaitis et al. (2017) found that patient navigation has evolved and explain patient navigation as holistic patient-centred care. In their scoping review, thirty-four papers were examined from the United States, United Kingdom, Canada, and Australia. Among the articles reviewed, three major motivators were identified for initiating navigation programs: a) improve the delivery of health and social care services; b) support and manage specific health needs or specific population needs, and; c) improve quality 34 of life and wellbeing of patients (p. 5). These motivators have led to the development of navigation programs in many countries including Canada that will be discussed further. 2.6.2 Patient Navigation in Canada Canada has embraced the patient navigation (PN) model and embarked on developing its own variations to meet the needs of particular populations. Reid et al. (2020) found that patient navigation in Canada is used as an approach to improve the integration of care and access to healthcare services. Lorhan et al. (2013) found that the early navigation programs in Canada focused on nurse navigators with specific skills. The Canadian Partnership Against Cancer’s Cancer Journey Action Group (CJAG) developed a definition for navigation in Canada: “Navigation can be defined as a proactive, intentional process of collaborating with a person and his or her family to provide guidance as they negotiate the maze of treatments, services and potential barriers through the cancer journey” (p. 85). In a comparative study of two professional navigation models, Cook et al. (2013) found that cancer navigation has three modes: self-navigation, lay navigation, and professional navigation. They found that these modes are applicable to patient navigation models with other disease conditions as well. Reid et al (2020) found that patient navigation in Canada is expanding and is frequently tailored to patient population groups. One considerable patient population group is the Indigenous population. 2.6.3 Patient Navigation for Indigenous Peoples Whop et al. (2012) found that Indigenous Peoples experience significant health disparities such as language barriers, differences in socioeconomic status, higher rates of co-morbidities, poorer health behaviors and cultural factors. Patient navigation is viewed as a method to reduce these disparities and is being explored further with Indigenous Peoples. 35 Bernardes et al. (2014) share findings of lessons learned from an Indigenous patient navigator program which was the first introduction of patient navigation for Indigenous Peoples in Australia in 2013. The five lessons that were found were related to cultural challenges, self-identification of Indigenous patients, integrating the PN program into the hospital setting, assessing the effectiveness of the PN program, and a limited number of Indigenous patients willing to participate in determining the feasibility of a PN program (p. 5). Canada has implemented Indigenous Patient Navigators in many provinces. Shepard et al. (2020) discuss Indigenous patient navigation in Ontario and the comprehensive functions of these Navigators and their responsibilities include supporting patients access to cancer services, palliative and supportive care; acting as liaisons and advocates for patient’s needs; providing education to non-Indigenous healthcare providers; supporting logistical components; supporting patients to process claims and reimbursements from the Non-insured Health Benefits Program; providing information on specific resources; arranging translation services, and other necessary services and equipment for those who wish to receive care and treatment at home. The list of functions is exhaustive. The Provincial Health Services Authority (2025) in British Columbia describe the role of the “Aboriginal Patient Navigators” are to support culturally safe experiences for Indigenous Peoples. Each of these descriptions and services are specific to institutionalized settings. Bernardes et al. (2014) found that the people most able or equipped to provide a culturally safe atmosphere are people from the same culture. Finally, one study highlights that Indigenous Patient Navigators for an Indigenous group in Labrador would support culturally safe experiences to support communication and even act as a spokesperson in hospital settings (Dawe 36 et al., 2024). Overall, the literature is limited for Indigenous Patient Navigation but it remains a promising approach to help address health disparities and barriers found in the studies reviewed. 2.7 Summary The systemic challenges Indigenous Peoples face impose great health disparities for Indigenous populations, particularly at the end of life. There are no formal standards, programs, or policies for Indigenous-specific end-of-life care. Instead, Indigenous persons must access general services that may not be culturally safe (Castleden et al., 2010). The literature is limited. However, there is a robust body of evidence on what culturally appropriate end-of-life care is, its challenges, and innovative strategies to consider in research and healthcare efforts. What is evident is that culturally appropriate end-of-life care will include specific considerations such as balance between Indigenous and Western health perspectives, integration of traditional practices, and meaningful interpersonal relationships between healthcare providers and patients that include open communication and cultural humility. More importantly, a family and community-led approach to education and training for both healthcare providers and Indigenous Peoples is essential to addressing the ongoing challenges and barriers that are experienced. Culturally appropriate and safe end-of-life care will foremost engage Indigenous Peoples in determining what this care looks like. It is important to recognize that culturally appropriate care differentiates from other healthcare terminology such as cultural safety or cultural humility. In this context, ‘culturally appropriate’ refers to the recognition of individuals, families and communities’ autonomy and preferences for care. The challenges are exacerbated by federal, provincial and Nation to Nation policies that do not respond to the unique needs of Indigenous populations. As such, policy development is an urgent priority. Innovative strategies 37 include Indigenous research methodological approaches, policy development, and strength-based approaches to implement palliative and end-of-life care in communities. A potential approach to meet the needs of Indigenous Peoples to provide culturally appropriate palliative and end-of-life care is patient navigation. Patient navigation has been a successful model in Western healthcare systems and in various international settings. In recent years, patient navigation professionals have been integrated into facilities in Canada to support Indigenous patients and remove healthcare barriers. It is a promising approach to explore in community-based settings that may increase community capacity to provide care for their community members. 38 Chapter 3 Methodology Introduction Indigenous ways of knowing is informed by generations of Peoples connected to distinct geographical locations and are critical to understanding the Indigenous research methodology introduced in this chapter. Western ways of knowing are constructed through scientific method and finding often objectified, whereas Indigenous ways of knowing have been derived from original creation stories and inherent subjective understanding interconnected throughout generations to all relations, a concept that is explained later in this chapter (Frideres, 2011). Each knowledge system has strengths; however, Western knowledges are viewed as dominant. Rather than maintaining the status quo, this research methodology and methods will center and honor Indigenous knowledges that in turn support Indigenous Peoples knowledge systems, as a means to acknowledge the past harmful relationship between Indigenous Peoples and academic researchers and my own actions to uphold Esk̓ét voices, values and beliefs driving this study. Indigenous researchers who have published their studies in various methods of knowledge translation, have advanced important scholarship on Indigenous epistemologies to allow for Indigenous knowledge, skills and capabilities to flourish and thrive within academic spaces and places of learning, such as those outlined in this chapter. Further, over time paradigms have shifted to allow Indigenous researchers to do their own research with their own communities. This shift is described through four stages from past to present: 1) Indigenous scholars situating themselves in a Western framework, 2) Development of an Indigenous paradigm with comparison to Western models, 3) Indigenous paradigm that focuses on decolonization or Indigenizing Western methodologies, and 4) the growth of an Indigenous paradigm that is rooted in Indigenous worldviews (Wilson, 2008). The research of this thesis is situated in an Indigenous 39 paradigm that is rooted within Secwépemc worldviews of the Esk̓ét community. This is an approach I used to decolonize my own thinking when it came to advancing my own learning and way of working with other First Nations communities exploring effective and meaningful palliative healthcare services. 3.1 Decolonization Historically, research has been conducted on rather than with or by Indigenous Peoples and their communities (Caine & Mill, 2016). This history has left a legacy of harm and mistrust between Indigenous Peoples, researchers and academic institutions. This legacy, however, is much more powerful than lacking trust. Research is directly tied to colonialism and the extraction of Indigenous knowledges (Smith, 2012). Western science research methods established narrow systems for the creation of knowledge that excluded Indigenous knowledges because of their holistic and spiritual ways of knowing (Kovach, 2009). As outlined in the four stages of an Indigenous research paradigm by Wilson (2008), research continues to progress and move toward decolonizing Western dominant research discourse by producing uniquely Indigenous research approaches. Decolonization may be variously interpreted but a simple understanding of decolonization is stepping outside of our comfort zones and questioning our motives and methods (Archibald, 2008). This requires acknowledgement of the harmful legacy of colonization and research to ensure we move forward in a way that does not maintain this legacy (Archibald, 2008). Smith (2012) maintains that Western research on Indigenous Peoples has brought “a cultural orientation, a set of values, a different conceptualization of such things as time, space and subjectivity, different and competing theories of knowledge, highly specialized forms of language, and structures of power” (p. 92). The legacy of colonization and these 40 described underpinnings must then be addressed through acts of decolonization and culturally appropriate research approaches, methodologies, and frameworks. The decolonization of research has progressed through the false narrative of terra nullius phase (observation of Europeans colonizing Indigenous lands) to a phase characterized by truth telling, relationship repairing, collaborative partnerships between Indigenous Nations, and accountability to each other including the lands where we come from (Wilson, 2008). The Indigenous scholars who have been a part of this progression in research come from Indigenous lands all over the world and from various disciplines. Indigenous scholars recognized that their connection to families, community stories, voices, and perspectives of Indigenous peoples are limited in public discourse (Justice, 2018). It is important to consult all, especially local Indigenous scholars’ work to ground the research so that the learning comes from wisdom, lived experiences humility and relational understandings (Justice, 2018). This act of grounding the research in local Indigenous scholars’ such as healers, helpers and allied health professionals work differs from that of dominant system scholars because Indigenous knowledges are unique to given cultures, localities and societies, and are acquired by local people through daily experience (Wilson, 2008). 3.1.1 Decolonization Through Community-Based Research Community-based research is a Western-based research approach that is undertaken to create social change and is community-driven to serve the interests of the community (Caine & Mill, 2016). Indigenous Peoples and communities have welcomed community-based research approaches because they align with Indigenous values (Caine & Mill, 2016). Community-based research holds promise to decolonize research as a result of its theoretical approach and principles. Decolonization in this context refers to adapting and questioning methods and 41 creating space for Western and Indigenous research approaches, methodologies, and frameworks to work together (Caine & Mill, 2016). A key tenet of Indigenous Research Methodologies is rooted in community relationships and the principles of Community-Based Research Principles are described below in Table 1 to showcase how they do align and are central to my own research inquiry (Archibald, 2008; Brown et al., 2015; Caine & Mill, 2016; Kirkness & Barhardt, 2001; Kovach, 2009; Weber-Pillwax, 1999; Wilson, 2008). 42 3.1.2 Indigenous Research Methodologies in Parallel with Community-Based Research Principles Table 1 Indigenous Research Methodologies Principles Community-Based Research Principles Indigenous Research is guided by the 4 R’s: Community-Based Research Aligns with the 4R’s: Respect of First Nations Cultural Integrity • Holistic Indigenous Knowledge systems are a legitimate way of knowing, knowledge is not individual but relational. • Indigenous methods, including story, are legitimate ways of sharing knowledge • Research is grounded in, respects, and validates Indigenous worldviews such as the land, spiritual beliefs and ceremonies, traditional teachings of Elders, dreams, and our stories • The interconnectedness of all living things • The transformative nature of research • The recognition of languages and processes as living processes An attempt to balance the generalizable knowledge with particular benefits to the community Acknowledgement of the need for flexibility and respect in the research design to honor the views of community participants due to the iterative nature of the process Relevance to First Nations Perspective and Experience • Research is action oriented and inspires direct action in Indigenous communities • The foundation of research as lived Indigenous experience • The groundedness of theories in Indigenous epistemology A focus on systems development that is specific to the needs of the community 43 Indigenous Research Methodologies Principles Community-Based Research Principles Indigenous Research is guided by the 4 R’s: Community-Based Research Aligns with the 4R’s: Reciprocal Relationships • Receptivity and relationship between the researcher and participants is a natural part of the research methodology. • It is essential to the learner/teacher relationship to follow cultural protocol • Collectivity, as a way of knowing, assumes reciprocity to the community A dedicated effort to integrate capacity building into the process by ensuring that the strengths, resources, and voices of team members and participants are valued Responsibility Through Participation • Researchers are responsible to Indigenous communities for the decisions that they make, and communities are the final judges of the validity and effectiveness of research projects. • The impact of motives and intentions on person and community • The sacredness and responsibility of maintaining personal and community integrity Attention to ethical implications of the research for the individuals and communities Authentic engagement of researchers and community members Adherence to collaboration 44 3.2 All My Relations As a Secwépemc woman, health professional and researcher, there is responsibility greater than what is at the surface of academia. As I have come to learn through my own Secwépemc upbringing and journey, is that this may be understood through the traditional teaching of All My Relations and in Secwepemctsín (the Shuswap language) is Xwexwéyt ren Kw’séltkten. This means that our ways of knowing and worldviews are guided by this teaching and our relationships with ourselves, our families, our communities, all human beings, the land and all of the beings within Mother Earth (Archibald, 2008). In other words, teachings shared by Indigenous creation stories is that everything is connected, and we have a responsibility to take care of one another. This is fundamental to applying Indigenous methodologies as it honors Indigenous Peoples’ familiarity with holistic worldviews and the way we conduct research with community (Kovach, 2009). With this knowledge upholding the research, the research may then be safe and otherwise not harmful. 3.3 Research Purpose The Secwépemc worldview and our Indigenous Research Methodology (IRM) Knucwentwécw roughly translates to “to help one another” which is interrelated to the research purpose. Knucwentwécw is a guiding principle that in the context of this research, was used to guide how we conducted the research, but also how knowledge is shared to help one another. My research purpose, to help one another, has four objectives: 1. To share knowledge about the Nav-CARE program with the purpose of gaining understanding about the fit and feasibility of adapting the Nav-CARE program for the Esk̓étemc. a. In what ways might something like Nav-CARE benefit Esk̓étemc? 45 b. How would it need to be adapted to fit Esk̓étemc? c. Do volunteers have an important role in caring for others during chronic illness? If so, how? d. Important ideas in Nav-CARE: quality of life, independence, engagement, working with, self-navigation, advocacy, palliative approach, self-efficacy, satisfaction with role, trained volunteers. Are these ideas relevant to Esk̓étemc? If not, are there ideas like these that are relevant to community navigation? 2. To share knowledge about how Esk̓étemc have adapted caring practices or continue to use traditional practices to care for one another in navigating their chronic illness experiences. 3. To vision new ways of caring for one another using community-based volunteer roles. 4. To create a report in which the learnings shared as a result of Objectives 1-3 can be shared with other communities and organizations. 3.4 Research questions: 1) How do Esk̓étemc care for one another during the chronic illness/palliative journey, including gaps in current community-based palliative care services and programs. 2) How may Nav-CARE be adapted with or suitable for Esk̓étemc based on the Esk̓étemc perspectives and practices shared. 3.5 Esk̓étemc Advisory Committee A community advisory committee consisting of representatives from Esk̓étemc supported the research from an advisory capacity. The Esk̓étemc Advisory Committee included Councillor Irene Johnson, previous Health Director Joyce Johnson, Co-Supervisor Doreen M. Johnson, and previous Chief Charlene Belleau. The importance of the Esk̓étemc Advisory Committee was to 46 establish a relational responsibility between the researcher, community, and all relations to ensure Esk̓étemc protocols and voices were rightfully followed and guiding the journey. All members of the advisory committee were provided with an honorarium of $150 per advisory committee to honour them for their time and wisdom shared. Each of the Esk̓étemc Advisory Committee members hold extensive knowledge and experience in relation to the research topic, community practices and protocols, and understanding of community-based needs. The Esk̓étemc Advisors were fundamental to this research as they are the knowledge holders of their communities, families, and all relations. The advisors participated in the Talking Circles and directed the analysis and findings stages of the research. The role of the Esk̓étemc Advisors was as follows: • Providing expertise on Esk̓étemc protocols, language, and knowledges • Guiding a culturally appropriate research approach • Participation in advisory committee meetings to review progress and provide guidance on method, analysis, and report development • Participate in thesis defense Overall, the Esk̓étemc Advisor’s role was to provide advice throughout specific milestones, ensuring that the research achieves its responsibility to all of our relations. The advisory committee met through various stages of the research including an initial advisory committee meeting that was held prior to conducting research, one meeting following the final Talking Circle to discuss data analysis and next steps, and one meeting to review the Health Canada Report. The Esk̓étemc Advisory Committee was an essential component of the research methodology who ensured that Esk̓étemc protocols were honoured, data were analyzed aligned accurately, and the findings were representative of the community. 47 3.6 Methodological Approach: Knucwentwécw An Indigenous Research paradigm is made up of what is known in Western knowledges as epistemology, methodology, axiology, and ontology. Each is connected and cannot be separated in ways that Western paradigms are structured (Wilson, 2008). The All My Relations teaching that everything is interconnected, has introduced my Secwépemc worldview, or in other words, epistemology. Following this epistemology is my methodology that comes directly from my language, Secwepemctsín. My Indigenous methodology is Knucwentwécw (Kuh-nook-went-wow-x). The most direct translation of Knucwentwécw to the English language is “to help one another.” The distinction of this methodology from its relevance to epistemology remain that they are intertwined but that the philosophy to “help one another” is used as a process throughout our ceremonies, gatherings, teachings, values, and ways of being and navigating the world around us. Knucwentwécw is a meaningful, culturally relevant, and safe research process. The Knucwentwécw methodology encompassed the following: • A purpose to unite • A collective value to pass on knowledge to help one another • Creating a safe space to listen without judgement and respect all perspectives and voices • Sharing stories, teachings, and ceremony to resolve an issue, provide guidance, or holistic care for those in need • Create balance between all relations Indigenous languages hold our knowledges and methodologies that have been in place since time immemorial. This is evident through our songs, ceremonies, values, languages, and oral 48 traditions (Frideres, 2011). Knucwentwécw is unique to Secwépemc Peoples as it is a knowledge base and system embedded in our language. I hold this teaching from my grandparents, my language teachers, and Secwépemc leaders who practice this in everyday work. All of the elements of this methodology are cyclical to maintain balance and well-being both individually and collectively. The methodology is used to inform the foundation of this Esk̓étemc-driven study, which aligns closest to my own way of knowing. 3.7 Research Partners and Participants: Esk̓étemc The research was conducted with Esk̓étemc (People of the White Earth) and in the community of Esk̓ét (White Earth) in Secwepemcúl̓ecw (Secwépemc Nation). Esk̓étemc refers to the people, whereas Esk̓ét refers to the physical place of the community. The Esk̓étemc are Secwepemctsín (Shuswap language) speakers. Esk̓ét is located in the interior of British Columbia, spanning 3,800 hectares, and is considered a remote community by health authority definition. There are approximately 445 peoples living in community and 583 who live outside of the community. Esk̓étemc is governed by both elected Chief and Council and a hereditary system that uses traditional Esk̓étemc governance laws. The community is thriving holistically in way of its culture, traditions, economic development, health and social services, and healing. The research proceeded through the support of the Chief and Council and Health department. The research partnership was entered formally through a research agreement with Esk̓étemc and the researcher Cara Basil. The purpose of the research agreement was to establish a set of principles to guide the conduct of the research and outline ownership and sharing of knowledge products. These principles recognize and emphasize Esk̓étemc cultural values and perspectives in the research process. Esk̓étemc Traditional Knowledge and Research Ethics Policy was adhered to through this research agreement. The research agreement’s final approval 49 was received from Esk̓étemc Traditional Knowledge and Research Ethics Policy Chair Doreen M. Johnson who is the signatory of the agreement on behalf of Esk̓étemc with Cara Basil. The signed agreement also underwent review through the UBC behavioural research ethics board and maintained reciprocity throughout the research. Upon finalizing the Research Agreement and approval of the research by the UBC Behavior Research Ethics Board (BREB) and Esk̓étemc, recruitment occurred through purposive sampling with Esk̓étemc. A recruitment posting was shared with the Health department and community offices that supported the promotion of the research project to facilitate recruitment of suited community members. Eligible study participants included community members who have direct experience living with a serious chronic illness or who have cared for a family member with a serious chronic illness in community. Exclusion criteria included community members with cognitive impairment who would not be able to share their experiences in the talking circle. Each study participant received an information letter and signed a consent form that provided an overview of the research project and the parameters of their participation. An initial gathering to discuss the research project and answer questions was hosted in community to receive formal sign-up from each participant. A total of 25 Esk̓étemc participated in one or more of the three Talking Circles. Due to the Talking Circles occurring during daytime hours, participants consisted primarily of Elders which was beneficial given their wisdom and longer-term experience with the practice of the end-of-life journey. The number of Esk̓étemc present at each Talking Circle was as follows: Talking Circle 1 (n=9), Talking Circle 2 (n=11), Talking Circle 3 (n=19). Notably, the number of participants at each Talking Circle grew as the research progressed due to more families learning of the research and wanting to share their stories. Esk̓étemc were encouraged to participate in all 50 three of the Talking Circles; however, the majority of individuals participated in one circle. The number of Esk̓étemc participants in Talking Circles was as follows: Participation in three circles (n=4), participation in two circles (n=8), and participation in one circle (n=13). Nineteen Esk̓étemc were female and six were male, no individual self-identified as non-binary or other gender. Esk̓étemc participants varied based on whether they lived in community (n=22) and in other rural or urban areas (n=3). The Talking Circles were hosted on a first come, first serve basis. Participants received a $75.00 honorarium per Talking Circle that they attended. Finally, it was identified in the recruitment stage of the research that a language interpreter would not be needed in the Talking Circles because there were no participants who participated in Secwepemctsín. 3.8 Data Collection Following an Indigenous Research methodology, Talking Circles and storytelling methods were used to collect data. Esk̓étemc gathered in the community for a total of three Talking Circles. At each Talking Circle, Esk̓étemc were asked to share their living and lived experiences through stories of living with a serious chronic illness or supporting a family member with a severe chronic illness. The talking circle and storytelling method are appropriate Indigenous research methods because Indigenous culture is constructed through oral language, used to inform past histories, kinship structures, beliefs, values, morals, expected behaviors and attitudes (Smith et al., 2020). For example, the word Knucwentwécw provided the structure of each Talking Circle. Esk̓étemc members were asked to gather safely and the purpose of each Talking Circle was shared at the beginning of the Talking Circle. Each Talking Circle was opened with prayer by a participating Esk̓étemc Matriarch as Esk̓étemc gathered. Additionally, Esk̓étemc followed 51 already established community protocols when joining in circle. Together, a safe space was opened by following the protocols so that Esk̓étemc felt comfortable sharing stories with one another. Following the opening of each Talking Circle, the Talking Circle question was shared and then Esk̓étemc were invited to share their stories in relation to the question asked. The researcher took notes and recorded each talking circle to accurately capture all voices and stories shared. Esk̓étemc were notified that at any time of discomfort, they were welcome to exit the Talking Circle, however, that did not occur throughout the data collection. Following the completion of Talking Circle one, Esk̓étemc were provided with a summary of the circle and next steps. In Talking Circle two and three the key concepts identified in the data analysis of the previous circle were shared. This proved to be a key mechanism for sharing what was heard at the previous Talking Circle to enhance further sharing of stories. 3.9 Data Analysis The research scope had two purposes that represented two types of knowledge. The first purpose was to determine how Esk̓étemc care for one another and the gaps in current palliative care services and programs in community. The second purpose was to understand these Esk̓étemc perspectives and practices to determine if Nav-CARE may be adapted with or suitable for Esk̓étemc. Data analysis within an Indigenous research paradigm does not follow traditional qualitative analysis methods. Wilson (2008) discusses analysis where the ideas and concepts within the data collected are encircled within an entire set of relationships. Referring back to an Indigenous paradigm that is cyclical with all elements connected, the same approach was applied to the way we interpret data. Wilson (2008) further states that “the knowledge that the researcher 52 interprets must be respectful of and help to build the relationships that have been established through the process of finding out information.” It is important to consider the lessons learned from traditional thematic analysis process with Indigenous communities and that this form of analysis has previously resulted in extracting data without the lived experience which can result in losing relationships within the stories shared (Simonds & Christopher, 2013). Collective Consensual Data Analytic Procedure (CCDAP) was identified as a data analysis method that would ensure stories were respectfully interpreted. The CCDAP data analysis procedure is congruent with community-based research, particularly with Indigenous communities, because it enables all parties involved to follow the Ownership, Collection, Access and Possession (OCAP) principles framework which is described in further detail later in this chapter (Starblanket et al., 2019). The CCDAP method includes open-ended questions through focus groups or interviews, which aligned with this research method of talking circles and storytelling, so that information that is shared is done so in a culturally appropriate manner and can be collectively analyzed (Starblanket et al., 2019). Due to limited capacity, we conducted the analysis in alignment with CCDAP principles. The analysis method undertaken is outlined in Table 2 below. 53 3.9.1 Data Analysis Method Table 2 Research Phase Proposed Collective Consensual Data Analytic Procedure (CCDAP) (Starblanket et al., 2019). Final Analysis Approach Data Collection • Collect lived/living experiences of community participants via talking circles and storytelling Honor the stories shared by weaving ceremony throughout data collection and analysis process • Collected lived/living experiences of Esk̓étemc via three Talking Circle and storytelling • Provided meals to share food Opened and closed Talking Circles in prayer Data Reduction • Stories are transcribed verbatim by researcher using transcribing software ExpressScribe so that collective analysis can occur in a timely manner. • Stories are reduced into data codes that contain a single idea, theme, subject or experience and printed onto cards • Researcher transcribed Talking Circle 1 verbatim • Transcribers were hired to transcribe Talking Circles 2 and 3 verbatim • Transcriptions were analyzed by the Researcher and Co-Supervisors to identify common experiences and ideas 54 The CCDAP method is a promising data analysis procedure for use with Indigenous communities as it enhances the participation of community and amplifies the lens in which data were analyzed. As mentioned, capacity in this research was limited as a masters degree-level research project in relation to time, resources, and participant capacity to support collective data analysis. Data analysis was completed as outlined in Table 2, column three. Research Phase Proposed Collective Consensual Data Analytic Procedure (CCDAP) (Starblanket et al., 2019). Final Analysis Approach Data Display • Group analyze printed cards together • 8 header cards are placed on a wall with symbols to avoid bias • Each card is read out loud and the group collectively determine columns for each card based on similarity of content • Continue process until all the cards are placed by majority decision-making • Key ideas were pulled from Talking Circle 1 and were shared in Talking Circle 2 via flipcharts • Key ideas from Talking Circle 2 were shared in Talking Circle 3 via flipcharts Conclusion and Verification • All cards are placed in columns, each card will be read out loud again • The group will come to a consensus on the theme of each column • Themes are written on new cards and replace symbol cards • A total of 2.5 hours is allotted for each group analysis and hosted virtually • Esk̓étemc confirmed key ideas were accurate in Talking Circle 2 and 3 • Key ideas from Talking Circle 3 were shared with Esk̓étemc Advisory Committee and approved • Esk̓étemc Advisory Committee meetings occurred for 1-2 hours virtually 55 3.10 Ethical Approach The research was conducted ethically to respect the self-determination of the community while honouring the knowledges shared. The research agreement, built in alignment with Esk̓étemc Traditional Knowledge and Research Ethics Policy, guided the conduct of the research to protect the data (knowledges) of the community and honour the reciprocal relationship between Esk̓étemc and the researchers. Further the Ownership, Control, Access, and Possession (OCAP) principles were adhered to as outlined in the table below. 3.10.1 Following OCAP Principles in our Research Table 3 OCAP Principles (First Nations Information Governance Centre, 2021) Meeting OCAP Principles in our Research Ownership refers to the relationship of First Nations to their cultural knowledge, data, and information. This principle states that a community or group owns information collectively in the same way that an individual owns his or her personal information. • Research agreement that requires permission of use of cultural knowledge and further outlines ownership of data, knowledge sharing, and knowledge translation Control affirms that First Nations, their communities, and representative bodies are within their rights in seeking to control over all aspects of research and information management processes that impact them. First Nations control of research can include all stages of a particular research project from start to finish. The principle extends to the control of resources and review processes, the planning process, management of information and so on. • Engagement with Chief and Council including formal approval via support letter • Recruitment of community members for participation included various approaches, such as Health Department direct recruitment, promotion in community spaces, information sessions, and participation in community events • Talking Circles that include reviewing the findings with Esk̓étemc • Esk̓étemc Advisory committee to guide project from start to finish • Community approval of what knowledge may be shared and final report 56 Finally, Chapter 9: Research Involving the First Nations, Metis, and Inuit Peoples of Canada, of the Tri-Council policy was adhered to for ethical conduct; however, it does not override the policies, protocols, or principles developed by Esk̓étemc or collective Indigenous groups. The Tri-Council policy and recommended application of specific articles was followed on the basis of the partnership between the researchers, the University of British Columbia Okanagan, and Esk̓étemc. Particular attention was paid to the principles of Respect for Persons, Concern for Welfare, and Justice. Respect for Persons was applied with each individual participant through consent forms and collectively achieved through formal approval by Chief and Council and a Research Protocol Agreement between the researcher and Esk̓étemc. Concern for Welfare was applied by hosting an information session to provide all research information prior to signing consent forms, presenting all identified themes back to participants for approval, and keeping participants anonymous in the use of data. Justice was applied through methods OCAP Principles (First Nations Information Governance Centre, 2021) Meeting OCAP Principles in our Research Access refers to the fact that First Nations must have access to information and data about themselves and their communities regardless of where it is held. The principle of access also refers to the right of First Nations communities and organizations to manage and make decisions regarding access to their collective information. This may be achieved, in practice, through standardized, formal protocols. • Esk̓étemc will receive all raw data following research and be the sole storers of the data as outlined in the Research Agreement • Researcher will provide presentation of research results to Esk̓étemc • Copy of thesis will be provided to the Esk̓étemc • Access responsibilities are outlined in the Research Agreement Possession. While ownership identifies the relationship between a people and their information in principle, possession or stewardship is more concrete: it refers to the physical control of data. Possession is the mechanism by which ownership can be asserted and protected. • Esk̓étemc will store all data in community • Esk̓étemc will receive full recognition of their contributions 57 mentioned in the previous two principles and importantly through the community-based research approach that was conducted on the basis of relationships and maintaining meaningful relationships between the researcher, community, and UBCO. 3.10.2 The 4 R’s of Indigenous Research The “4 R’s” of Indigenous research are frequently emphasized in research with Indigenous Peoples. They are respect, relevance, reciprocity, and responsibility (Kirkness & Barnhardt, 2001). These were applied and aligned directly through the traditional teaching of all our relations, which is the framework of this research. Through this framework and honoring the 4 R’s of Indigenous research, it is important to acknowledge the relationships that are within this research. The relationships are interconnected and represented in figure 1. An alternative R considered by Archibald (2008) is reverence which speaks to the spirituality and worldviews of Indigenous Peoples that is critical to research with Indigenous Peoples. Figure 1. Relationships of our Research The relationships within this research are critical and they encompass each of the 4 R’s. The researcher and supervisor relationships was a partnership relationship versus typical supervisory relationships; it focused on collaborating and learning from one another to benefit Indigenous Peoples through this research. The supervisors were one faculty from UBCO and one Esk̓étemc representative. The co-supervisors were a part of the academic supervisory committee ResearcherSupervisorExamining CommitteeAdvisory CommitteeEsk̓étemc 58 consisting of academic scholars who have supported the research through critical analysis and guidance throughout the research. The advisory committee undertook responsibilities similar to a regular thesis examining committee but also focused on guiding the research from an Esk̓étemc lens that ensures the research adheres to cultural protocols, principles, and laws which supercede all other research agreements. The relationship with Esk̓étemc has been foundational to this research and all persons involved in this research are responsible to Esk̓étemc who are the rightful owners of the research. The relationships among the research team were rooted in respect, relevance, reciprocity, responsibility in this research approach. Further, it is important to highlight the reciprocity that occurred through this research. Figure 2 represents a reciprocal research relationship that begins with the researchers who are learners and follows a cycle that upholds Indigenous communities as the teachers and sovereign Peoples that own all of the knowledge shared. 59 Figure 2. Reciprocity in our Research 3.11 Knowledge Translation The Canadian Institute for Health Research defines knowledge translation within a Western scientific research model, whereas knowledge translation in an Indigenous context must be defined by the community itself (Smylie, et al., 2005). Knowledge translation in an Indigenous context is inherent to the lived experience and occurs simultaneously as one experiences it. It is a complex process due to the holistic and cyclical models that are embedded within Indigenous knowledges and specifically Indigenous languages. The starting point for knowledge translation with Indigenous communities is found within the “all my relations” teaching that holds us (researchers) immediately accountable for conducting and disseminating research in useful and meaningful ways. This requires taking care of and honouring the holistic underpinnings of each person in the collective of the community’s knowledges. Importantly, the Researchers are learnersCommunity is our teachersShare research questions from learners to teachersCreate safe space to share knowledgeTranslate knowledge for community benefitShare knowledge translation with Indigenous communities and non-Indigenous people Honor both worldviews and ways of being to improve health outcomes 60 Esk̓étemc determined the knowledge translation model that is most suitable within the priorities and ways of knowing identified by Esk̓étemc (Cooper & Driedger, 2018). Following a strength-based approach, knowledge translation occurs through storytelling. Past research with Indigenous Peoples has been deficit-based, using a Western lens that objectifies othering and does not recognize that Indigenous Peoples thrived within their unique social, political and kinship structures (Cooper & Driedger, 2018; Smylie, et al., 2005). A strength-based approach for knowledge translation means there will not be a comparison between Indigenous and Western ways of knowing but recognition of the strengths of each and that Indigenous ways of knowing are critical to developing culturally appropriate programs and policies. A key outcome of the initial research included the development of a toolkit to inform Indigenous communities and models of patient navigation, but a report was determined as a preferred knowledge translation method to submit to Health Canada. Drawing on this research a report will include the following contents: • Section 1 Introduction: Research Questions, Research Partnership and Research Team • Section 2 Nav-CARE Overview • Section 3 Esk̓étemc: Esk̓étemc Knowledge Keeper Acknowledgements and Participant Consent • Section 4 Research Process and Agreement • Section 5 Research Methodology • Section 6 Findings Themes: Themes and Sub-themes (Experiences and Ideas) and Esk̓étemc Caregiver Story • Section 7 Talking Circles Graphics 61 • Section 8 Recommendations: Researchers and Institutions, Health Bodies and Funding Agencies, A Collective Responsibility • Section 8 Conclusion: Answering the Research Question The Esk̓étemc Advisory Committee have determined that sacred knowledge will not be shared in the public domain but be kept in the community. Sacred knowledge data will be stored by Esk̓ét and includes details of ceremonies, practices, and protocols Finally, the report will be shared with other organizations and communities to provide a framework for Indigenous communities to conduct similar research upon approval from Esk̓étemc. For the purposes of this thesis, I honor the voices and experiences of community participants who contributed their time, knowledge and experiences to advancing solutions to improve palliative care. Future knowledge translation will occur as determined by Esk̓ét to identify next steps to implement the findings. 62 Chapter 4: Findings Introduction “I’m glad there’s the discussion and I look forward to hearing people’s stories and I think it’s only through stories about what we went through to know when the system failed that we will change the system. And I would expect that what people refer to as the United Nation’s Declaration on the Rights of Indigenous Peoples simply means that you deserve or your mom deserves the best care that any other woman got from the hospital and if she didn’t then that’s not right. So, the government is guaranteeing that we have the best care, just like anybody else, and we deserve the best care, like anybody else.” (5, 205-212) In this chapter, I discuss the findings from the three Esk̓étemc Talking Circles. Excerpts are included in each section of this chapter to uphold Esk̓étemc stories that were gathered and interpreted from Esk̓étemc members lived experiences. In making meaning of the collective analysis process we identified five key ideas that were organized and captured through graphic recordings. It was important to share a narrative of Esk̓étemc participants’ lived experience in response to the research questions. The five key ideas identified included: 1) honoring Esk̓étemc Ways; 2) Caring for One Another; 3) Colonial Legacies; 4) Lack of Resources; and 5) Community Vision: Community-Based Navigators. The key ideas are woven throughout each of the Talking Circles and first shared by the graphic image created and followed by text to provide context. The text includes direct quotes from Esk̓étemc that are coded by the following format: (Transcription Page Number, Transcription Line Numbers) to support in locating the excerpts outside of this thesis. It is also important to state that the order of these themes is purposeful and begins with Esk̓étemc Ways because Esk̓étemc practices have been in place since time immemorial and are continuously impacted by colonization and the colonial legacies that influence the subsequent themes. 63 4.1 Talking Circle 1 Figure 3 "Talking Circle 1 ©ElenaSterritt(2024), used with permission." Colonial legacies are woven throughout each of the Talking Circles. The first Talking Circle brought together nine individuals who shared their stories and perspectives of how Esk̓étemc support one another to navigate their advanced chronic illness experience and particularly their loved one’s experiences at the end of life. The Talking Circle resulted in key conversation that highlighted important findings of colonial legacies, sacred Esk̓étemc beliefs and practices for illness and end of life, lack of resources, importance of family, and the preference to remain at home or in community. 4.1.1 Esk̓étemc Ways The Talking Circle began with roundtable discussion and identified the finding of colonial legacies that impact Esk̓étemc end-of-life protocols and practices. One Elder shared, 64 “The outside people never had anything to do with it everything happened here, uh and the wake was in the house the way it is today with the fire outside, it’s always been like that and uh the three-day period of the wake and the morning of the third day uh the guys went up and dug the grave on that morning and they put them in the ground that same afternoon. It was a three-day period from the time he died to the time he was in the ground” (14, 425-430). The story above shares the protocols and practices Elders recalled in their upbringing and how they have been impacted by external entities such as ambulance, police, and healthcare providers when someone passes. Stories of ceremony at the end of life were also shared and the lack of individuals who can still conduct those ceremonies. A Knowledge Keeper shared, “Well there’s just another thing that came in mind is like if there was like a sudden death or sudden accident or something there would be a ceremony where I had seen somebody go and the way the ceremony I understand it is they go and um pray for the spirit to go pray for the body so that way it’s not um stuck in that area because um it’s uh I know only of a few people that do the ceremony” (18, 536-540). This experience reflects the importance of the spirit needing to be set free at the end of life and to do so, Esk̓étemc were accustomed to practicing a particular ceremony. It was found that this practice and individual beliefs have been impacted due to colonialization and legacies such as the Indian Act that included the banning of traditional ceremonies and Residential Schools that stripped human beings from their families and cultural practices. Today, Esk̓étemc recognize that each family and individual is different in their beliefs and practices. One participant shared, “And the thing is here in Esk̓ét is we have traditional people who like to follow traditional ways and also we have Catholics and Christians here in our community who want to do strictly that way or mixing it” (7, 203-205). This story affirms the finding of the impact of the Residential School System as a colonial legacy that has fractured Esk̓étemc traditional beliefs and practices. 65 4.1.2 Colonial Legacies: Racism in Healthcare Another finding was that the colonial legacies that persist include experiences of racism and barriers in the healthcare system. We found that these experiences were evident in both urban and community-based settings. One person shared highlights of the barriers to conduct ceremony in a hospital setting, “So anyways [name] had to die in Kamloops and we all had to go down there. They took him off the machine and he just went and couldn’t talk because he had a hole up here in his throat, and it was just awful, you know then we couldn’t do smudging or drumming or anything like that cause we were in ICU and that wasn’t something that we could do” (6, 171-175). The practice of smudging, drumming and having family present at the end of life is sacred to Esk̓étemc and an important finding in what constitutes culturally safe care. Another finding was the systemic racism and barriers that are experienced in the community itself. One Elder shared, “But we definitely aren’t the free people we used to be a long time ago, everything is directed here” (2, 39-41). By this, the Elder meant that because of the Indian Act, the Band Office programs and services are directed in ways that do not align with culturally appropriate care. An important point about systemic racism and barriers in healthcare settings, is that Esk̓étemc do not want to access healthcare services outside of community. The key concept of racism in healthcare was a common thread as shared in the story below. “because um even when I was first started going to the hospital, my [name] had said, you know the doctor asked me how much has she (crying), how much has she had to drink and I don’t remember that but my [name] remembers that and he just said I couldn’t believe that doctor would ask that and I was really sick and that’s the kinda things that make me think of others who have had to go through that. But just those kinds of issues I just want you to be aware of you know and that’s all I have to share right now and (gestures to next participant)” (11, 323-329). This was not the only story shared of racism in healthcare settings and assumptions of alcohol consumption. These experiences of racism have contributed to significant health disparities for 66 Esk̓étemc. We also found that though there is a preference to receive care in Esk̓ét, there are a lack of resources available in community. The lack of resources that will be discussed include a lack of funding, difficulty navigating resources, and human resources. 4.1.3 Lack of Resources Colonial legacies and the lack of resources experienced by Esk̓étemc participants are interconnected as we live in a Western society. We found that traditional Esk̓étemc practices at the end of life included caring for loved ones throughout their illness and the end-of-life journey. One Knowledge Keeper shared the impacts of community-based funding stating, “And we can’t look after our elders or have somebody there all the time. Or you know people that are dying so that’s one of the things that’s a big issue and I’d be interested to see because you know Nav-CARE wants to be a volunteer, we have a hard time getting people to do things nowadays because of the monetary economy and because people need uh you know gas money to even get to town and stuff like that so” (7-8, 214-219). Esk̓étemc are unable to care for one another how they had in past generations due to disturbing inequities in social determinants of health. For example, many face unemployment and are unable work or attend school responsibilities that were introduced by Western society. We found that Esk̓étemc also encounter difficulties navigating resources and a lack of support to understand what is available. The lived experience of one Esk̓étemc was shared, “But as for myself it just felt like even with what I was saying with my chronic illness, I felt like I wanted more support but it just it felt like um there wasn’t enough resources for everybody or I don’t know maybe was just during that time and it just wasn’t didn’t even know really what resources were there that was in place” (10-11, 306-310). It is evident that current gaps in community-based programs and services are resulting in poor care and early death due to the lack of funding and supports available. We found that Esk̓étemc families are struggling to navigate how to support one another through illness and at the end of life. 67 4.1.4 Caring for One Another: Family Roles Esk̓étemc participants shared the importance of family during illness and end-of-life care. It is critical to have family involvement at home and in external settings. One Knowledge Keeper shared the importance of having family members present in hospital settings for medical translations and cross-cultural understandings. They shared, “That’s one thing I would be very clear um and uh uh (stutters) the family meetings are so important when you’re out there and typically what I’ve seen is they will want a doctor or nurse if they’re smart will say can I please speak to the family spokesperson you know the head of the family a lot don’t know culture that quite often there’s a family member who’s a spokesperson” (16, 468-473). We found that it was important to Esk̓étemc to have family present in both community and healthcare settings. The importance of family in healthcare settings was described in the following story, “it used to be hard for me to even ask you know when I had my doctors’ appointment and I said I needed [name] with me and then he sometimes at the time they were like well you don’t need, you’re just the one, we can only cover you and but I don’t know if that’s true because I was like I needed that second person with me in that doctors office so that way they can let me know what’s being said without you know me missing out on information” (11, 318-323). A key finding of the importance of having family present was the need for emotional and mental support as shared above. It was also important to have family support at home as one participant shared, “It’s like my mom asked me can I bath her when she had her double mastectomy because she was nervous for somebody she didn’t know to see her. I never seen my mom naked but it was at that time like okay I’ll do it but that’s not there anymore like okay mom I’ll wipe your butt but somebody else might not you know it’s just people aren’t comfortable with that anymore. And so how to get that back?” (21, 624-629). 68 The story above describes the importance of returning to family roles of caring for one another. This is related to the next finding that discusses the preference to remain at home or in community. Throughout Talking Circle 1 Esk̓étemc participants shared their personal experiences and stories about living with or supporting a family member living with advanced chronic illness, or often, those at the end of life. As the Elders and Knowledge Keepers shared openly with one another, one finding was clear throughout Talking Circle 1 and that was the importance of remaining at home. One Elder shared, “And uh I’m just hoping that this works out because there has to be a better way than having our people die out there on the outside than they would when they’re with us” (24, 730-732). The Elder is referring to the family and community roles that Esk̓étemc traditionally practiced that would produce better care and a sense of belonging and supportive end-of-life practices that resonated throughout the next talking circle. 4.2 Talking Circle 2 Figure 4 "Talking Circle 2 ©ElenaSterritt(2024), used with permission." 69 The Talking Circle began by following protocol and opening up in a good way with roundtable introductions of everyone present. Following introductions, an overview of what was heard in Talking Circle 1 was shared as an iterative method for co-analysis to ensure key ideas were carried through. Through this approach, the Talking Circle proceeded with Esk̓étemc sharing stories that expanded on the key ideas and experiences identified in the first Talking Circle and progressed to envision the role of community-based navigators. 4.2.1 Esk̓étemc Ways The stories of Esk̓étemc in this Talking Circle focused on the traditional roles of medicine people and distinct end-of-life practices and beliefs. The finding of Esk̓étemc ways encompasses sacred knowledge that was shared by Esk̓étemc. One Knowledge Keeper shared the following story of Esk̓étemc ways, “I remember hearing this that before… we call them [a] medicine person, [they] would… before we would explain to their community or to their village about what happens and explain that process to, you know, the people because that was their different roles, I guess, different ways that people have their different gifts. So, I heard that before, they'd explain that to the people what happens and why and all this, so they all understood. But it was understood that it doesn't take away the human emotion. Like, it still hurts. It's whatever… you could have all the knowledge in the world but it's still going to hurt” (36, 1711-1718). The Knowledge Keeper is sharing that family and community roles, such as medicine people, carried a responsibility to care for one another and though it was a common practice, it did not dismiss the caregiver grief experienced by those individuals and families or communities. 4.2.2 Colonial Legacies: Residential School Impacts Another finding was that these roles and ceremonial practices have not been passed on because of colonial legacies. They shared, “Another thing as we get older, people that feel like they can go deeper because right now a lot of us operate on this level. Like, we can't go lower or go higher, like, in our 70 thinking. [Specific sacred knowledge taken out of quote] So, ya, a lot of the deep spiritual stuff is what we don't really talk about. Like, we talk about spirits. You know, we don't… we're not passing it onto our kids enough, so they know and understand, like, there's another level of being. Like, you know, they're just all on this level and we think this is all there is but we know there's other levels” (38, 1779-1798). The story highlights that prior to colonization, there were distinct beliefs and practices that contained a level of spirituality that has been lost and has not been passed on throughout generations resulting in barriers in knowledge transfer. One Knowledge Keeper shared that knowledge transfer may occur through contemporary methods stating, “And you were talking about younger generations learning about this. I think the only way you're going to be able to do that, I think, is if they maybe start explaining to those kids in school because when a funeral happens it seems like nobody brings their kids. They don't go to the service and they don't go over to the house or anything really. So, probably they might have to start teaching it in school and in language or something” (4, 181-185). Colonial legacies impact the traditional methods of knowledge transfer that occurred when individuals helped in end-of-life practices and now will require contemporary teaching methods such as school settings as described above. 4.2.3 Colonial Legacies: Racism in Healthcare Racism in healthcare and the fear of being re-institutionalized were shared throughout individual and family experiences, building upon findings from Talking Circle 1. The racism experienced in healthcare settings outside of the community extended to all ages of Esk̓étemc. One individual recollects supporting a family through their experience and state, “And why we were talking about that is as the health director, I was constantly going and meeting with the doctor in charge and the nurse in charge because of how some of our members were treated. And we had a young girl go in and she was so sick she could barely walk and they didn't know what was wrong with her, so her mom came from the back part of the hospital because that's where they parked and they walked into the ER and the nurse asked, "So, what was she drinking?" That was… and this girl was 13. So, anyway, it was the assumption already that she was drinking. She wasn't even drinking; she was just really sick. So, anyway, that came in as a complaint, so I went in and I 71 [dealt] with the nurse in charge, the doctor in charge, the person at ER and we had to deal with that nurse and her attitude towards our people” (15, 685-695). Similar to Talking Circle 1, it was found that the blatant racism of bias informed care experienced by Esk̓étemc participants and their loved ones impacts how individuals access care and the preference to not leave community. 4.2.4 Colonial Legacies: Fear of Being Re-institutionalized Residential School has influenced how Survivors may access care and a fear of being re-institutionalized at care sites. One Elder shared, “Especially if you had gone to a residential school and then you end up in a shit hole like that. I don't know, I would kill myself before I went to Deni House or anywhere because, you know, you're under somebody's control again” (34, 1581-1583). The story compares the current long-term care option, Deni House, as similar to going to Residential School. Current care options, such as care homes are not culturally safe or appropriate. From these stories that speak to the finding of colonial legacies, Esk̓étemc shared stories regarding the lack of resources available. 4.2.5 Lack of Resources: No Off-Reserve Supports The lack of resources in community found in Talking Circle 1 was expanded on in Talking Circle 2. We found that a lack of resource for off-reserve supports was significant. One Knowledge Keeper shared the experience of caring for her husband as members who live outside of the community. She shared, “So, my husband and I both don't live on the reserve or any reserve, even though we belong to lots of different ones, like, from family. But… so, we've always lived in town but we're from Clinton originally where everybody just helps each other and funerals and so any kind of thing, every family just helps each other. But what I noticed when N**** was in the hospital with his heart surgery and I was in the hospital here and N****'s older brother was actually in the hospital and has been for about two months, if we're… if you're band members but not on reserve and they ask you in the hospital to self-identify as First Nations people, you don't get any services at all. Like, there are no services for 72 you because even when you're in Vancouver Hospital or B****'s been in Kelowna and Kamloops and now he's transferring…” (14, 635-644). The stories shared from Talking Circle 1 represented the experiences of Esk̓étemc who live in Esk̓ét but for Esk̓étemc who do not live in Esk̓ét, the barriers are vast because there are no community-based supports available for ‘off-reserve’ members. The hospital does provide Aboriginal Patient Navigators (APN’s) but participants discussed the negative experiences between Esk̓étemc and APN’s. 4.2.6 Lack of Resources: Current Health Authority-based Navigator Roles are not Meeting the Needs of Esk̓étemc As previously mentioned, Aboriginal Patient Navigators were a known service but the experiences with an APN were not beneficial to Esk̓étemc. One Knowledge Keeper shared, “Ya. So, when you get to the hospital… like, when I got there finally with the stroke that I was having, mind you, they rushed me in because I have this card saying I'm a cancer patient still and so you… we get priority to go in. So, they rushed me in and they did all these tests and everything and then they came back and told me I had a stroke and then they said the navigator is going to come and they're going to talk to you. Shit, I didn't see her until the morning. Ya, and they came in there overnight and then I had to sleep in the ER and I told that nurse, "I can't sleep when there's lights everywhere, I just can't do it." So, they gave me Benadryl (laughs). Even the navigator came the next day and asked me my name, how old I was, what I was in there for, and then she went away and I never saw her again. Ya, that's all it was” (19, 888-897). The role of the APN is unclear and did not provide adequate support for Esk̓étemc in hospital settings. It is certain that community experiences highlighted a lack of resources, but from an urban focus, the hospital experiences shared by Esk̓étemc, also lack culturally appropriate resources and tokenized services. 4.2.7 Community Vision: Community-Based Navigators Esk̓étemc have a clear vision for a community-based model of navigation due to the poor quality of current navigation models and unjust experiences when accessing healthcare. Talking 73 Circle 2 progressed to envision community-based navigators and the scope of their role to support individuals living with advanced chronic illness or end-of-life care. The overarching significance of community-based navigation stemmed from the need to improve family supports to relieve the caregiver burden and grief experienced by many. Family supports may include: 1) Homecare, 2) Interpretation, 3) Navigating the Health System, and 4) Afterhours Support and Respite. Other aspects of the model of community-based navigators will include: 1) Cultural Supports, 2) Friendship and Visiting, 3) Off-Reserve Support, 4) Community-Driven Hiring Process and 5) Paid Positions. These strategies stemming from their lived experience represent extremely important indicators to improved palliative care designed by community. 4.2.8 Homecare Support As Esk̓étemc envisioned the role of community-based navigators, Esk̓étemc shared about the lack of robust homecare. One individual recollected their experience of trying to care for their loved one at home and the struggle to maintain the level of care needed. They shared, “Well, it wasn't until my mom fell in the bathtub that she said, "Bring me to Deni House." For some… like, J**** would look after her and then some nights I'd look after her because she stayed with me, so I'm holding her and we're trying to get in the bathtub and she slipped like this, she kicked my foot, both of us… we were lucky she landed on me. I hit the bathtub and I'm laying in the water and she's on top of me. And then, it was kind of funny after but she's finally, like, "You can let me go to Deni House." Because we'd ask her and she's, like, "Well, if you can't look after me, you can bring me there but make sure to visit", she says. But, ya. It was difficult” (33, 1570-1577). We found that homecare support would be a key component of a community-based navigation model to support family in caring for their loved ones and remain at home. 4.2.9 Interpreter for Medical Terms and/or English to Secwepemctsín Esk̓étemc expressed the difficulty of having to access care facilities and the challenge to support their loved ones through their diagnoses or medical trajectories. We found that there is a 74 need for medical interpretation when caring for a loved one. Many Esk̓étemc expressed the need for Interpreters, as reflected in the following statement, “And I talked to her lately and I was telling her what we really need is somebody at our health centre who can be a worker but in the hospital and our health centre. Like, you know, when somebody ended up and they say they're Esk̓étemc, then this person will go in, help that person do… you know, understand first what they're going through. Maybe that person will take somebody like J**** and if it's an elder, interpret, "Okay, this is what they say, the doctors say", in a simple way” (15, 680-685). Interpretation was identified as a key component of the role of a Community-Based Navigator and may include interpretation for medical diagnoses or even language translation for Language Speakers. 4.2.10 Navigation of the Healthcare System Navigating the health system was another suggestion for community-based navigation that would alleviate family stress while caring for one another. One Knowledge Keeper suggested, “And that's how it is. But if you had someone that… if there's somebody that… so, I had really, really bad asthma. Right? And so, I need help, like, instantly but if you knew that there was one person there you could phone and then N**** doesn't have the responsibility to make the phone calls, he can just look after me, then someone else could do all the calling. Right? And if someone… at least there's one person to call rather than, like, your family trying to do it for you and they don't know what to do and they're panicking and all that kind of stuff” (22, 1054-1060). Esk̓étemc who shared experiences of living with advanced chronic illness preferred community-based supports that could support them in navigating the health system as a method to relieve family of caregiver grief. The need for day-to-day navigation of the health system interconnects with the final aspect of Family-related Supports. 75 4.2.11 Afterhours Support and Respite The need for after-hours supports and respite was a great need expressed by Esk̓étemc. One component of the role of a community-based navigator may be to provide respite for family members. The group shared, “Ya. Like, with the chronic illness, like, we just have family looking after that family member. The family that's looking after is also going to get worn out. Right? So, this is where I think you'd have to have your navigator. Right? The family is going to be there but the navigator is going to take most of the load because all… like, I'm just going by my sister and my brother, B****. She's 76, and she's the closest family member there right now and he was always calling her and she just finds it, "B****, I can't do it. I need the day off." Right? So, it's… if it's every day, I think that family members will eventually get worn out. And then… you know, then, now you've got more people being sick and not… maybe not necessarily an illness but it's just wearing on their minds and everything. Right?” (1517, 1517-1526). Esk̓étemc caregivers shared stories of burnout and caregiver grief that required external supports to alleviate. Respite was identified as an important component of Community-Based Navigators, along with services being available any time of day as needed such as on-call supports. As a participant shared, “they're not always there, whereas if you got your… like, your doctor or whoever is on call, they're there 24/7. Right? So, they're there first, and then your family can come in later and say, "Okay, we can take up the slack from here now" (22, 1019-1022). The perspectives shared by Esk̓étemc reveal the strain contemporary circumstances such as work and school have on family caregivers. They suggest that on-call supports, available 24/7, would relieve the financial stress of caregivers, alleviate absence from work and school, and reduce stress of being the only caregiver. 76 4.2.12 Cultural Supports Aside from the need for direct family supports shared by Esk̓étemc, the finding of cultural supports was discussed as part of the role of a Community-Based Navigator, reflecting a wholistic perspective. An Elder shared, “A spiritual leader and then somebody that just takes care of funerals but what we need is somebody, like, a… you know, that would… maybe a woman and a man that would go into a family and say what kind of help that we offer. And I say that because some families are different. So, like, you know, if I go in, they might not like me, so they say, "No, we don't need you to do anything." So, I'm, like, cautious. Like, I don't bring my drum unless they say, "Can you bring your drum?" That's how cautious I am. So, I won't just step into a family, you know, unless they ask. So, what we need is somebody that can be that in between. Like, "Okay, "B****, D****, F****, they need drummers, can you guys come?" You know, somebody to say that and that's easier than being refused. You know, if you offer it and they say, "No, we don't need you." And, you know, we've had some of that, you know, where people needed help but it was only from certain people they wanted help. So, ya. So, that's another issue” (20, 938-939). The proposed Community-Based Navigator should be equipped with cultural knowledge and teachings to coordinate cultural supports for individuals and families. In addition to providing cultural supports, friendship and visiting were identified as needed to support individuals. 4.2.13 Friendship and Visiting We found that friendships and visiting with Elders and those living with advanced chronic illness were important for Esk̓étemc. As shared by a Knowledge Keeper, friendship is important stating, “I know it's probably a longshot but what I would like to see is more support, like, when our people… I know we've got a handful of elders in town and _____(1:40:08). Some sort of, like, a patient travel but not a patient, it would be, like, a… maybe a support. Remember when C**** was in there and she… nobody would visit her because, you know, we're all working. Right? And we'd go there and she'd be kind of, like… she was starting to lose it. But, you know, I know a lot of… they want visitors, they want family, they want friends, ya. And sometimes it's friends that they want because family is going there, you know, and it's kind of a…you don't open up to certain family but friends you can. You know, some sort of, like, a travel support for that kind of thing would be great. You know, if you wanted to visit your friend in the hospital because they're lonely or whatever, right, and their mental health is down as it is” (25, 1160-1170). 77 Friendship and visiting contribute to a wholistic model of care as shared by Esk̓étemc and how it would contribute to an individual’s mental health support. Previously, visiting with one another was an everyday occurrence and provided relational accountability to each other and all relations. 4.2.14 Off-Reserve Supports Off-reserve supports was discussed by Esk̓étemc to ensure all Esk̓étemc members received care regardless of where they reside. Funding and resources must be made available for all Esk̓étemc. As stated, “I think we should look at the whole of BC and on and off reserve. A**** and N**** have had a bunch of problems and we should look at, you know, Vancouver region and maybe the Cranbrook area. You know? Kind of check them out and somebody do, like, a part-time job or just, you know, do, like, a fee for service. If we call them, they have to go to the hospital and be with them for however long and then they'd just be _____(2:03:56) hours” (32, 1499-1504). The need for off-reserve supports highlights that the community vision extends beyond having a single navigator in place, as we learned further in Talking Circle 3 the importance of a team-based approach of navigators. Finally, two logistical aspects of the Community-Based Navigators mentioned were the need for a community-driven hiring process and paid positions to ensure the model would be successful. 4.2.15 Paid Position As the scope of the Community-Based Navigators expanded, we found that paid positions were needed to ensure the navigation model encompassed all the components described previously. Esk̓étemc state the following regarding paid positions, “Well, I think a community-based navigator, you'd have to… I would think you'd have to have someone or a group probably federally funded somehow, like, a first aid station-type thing on communities that's going to be there 24/7. Right? Because I'm thinking 78 that's the only way you'd be able to have a navigator here that would be… with the advanced chronic illness to always be there and be ready to go if you need them” (21, 973-977). Paid positions were identified as critical to ensure that systems support was available any time of day. The need for paid positions provoked uncertainty for the outcome of the final Talking Circle and how the volunteer-based Nav-CARE intervention may suit Esk̓étemc. 4.3 Talking Circle 3 Figure 5 "Talking Circle 3 ©ElenaSterritt(2024), used with permission." Talking Circle 3 was the final Talking Circle with Esk̓étemc where individuals shared their stories to explore the fit between the Nav-CARE intervention and Esk̓étemc practices. The stories shared suggested the need for an intervention such as Nav-CARE. One participant shared their journey caring for loved ones living with advanced chronic illness and through their end of life. It was important to share its entirety. The story speaks to the lack of resources in and outside of community, difficulty navigating the health system, caregiver grief, inability to practice 79 Esk̓étemc ways and caring for one another – the story encapsulates the multi-faceted findings of each Talking Circle. “Years ago, my mother died from liver failure. She was not diagnosed until she was at what the doctor called end-stage liver failure. We were told she had about three months to live, but with how strong my mom was, she lived for four years after her diagnosis, not three months. I tried my best to navigate her diagnosis with her and do what was best for her, but I didn’t have any resources to access. I didn’t have a social worker, or anyone who could support me as a navigator. We tried to figure it out by ourselves, listening to the doctors and what they were telling us to do, but I could only really depend on a few of my family members through this. I felt so alone looking after my mother in that condition. One day we had to go to the hospital because she fell out of bed and we could not lift her off the floor. I know we have these traditions and these strong beliefs of Esk̓étemc looking after one another, but we were completely alone. We were alone. I couldn’t lift her. Dad couldn’t lift her. Dad was as old as she was, and there was no support for anybody. We had some support from the Health Centre in Esk̓étemc, but I had to figure out her medications that she refused to take all the time, but if she didn’t take it, she had bad side effects from missing her dosage. After some time caring for her, I told her, I’m exhausted, I can’t look after you and work at the same time. I asked her if she could please go to the care home and just look at it to see. One day she agreed and we took her to the care home and we gave her a tour where they explained everything of what her care would be like there. Her biggest fear was being alone, she didn't want to be alone. She was scared of people, you know, hurting her, and I was too because you don't know what happens when you leave those places. Right? I was scared for her because I knew she needed to be cared for properly and was particular about her care. She moved to a different home, and there was never any sort of help for us along the way. I was the power-of-attorney for her and I would get all of these calls from banks, old age pension and everything. I had to make all of these decisions alone and there was no one there to tell me what to expect or what to do. It was a brutal experience to go through to watch my mother die in front of me, and I had nobody. I had nowhere to turn, and I had no way to express that I’m tired and need help. Because you can't. I'm her daughter, I should be looking after her. I went through this for about three or four years before she died and I got to the point where my head was going to explode. One day, I got a call from the care home and they said we don't know where your mom is. You think the worst after a call like that and there’s nobody there to say anything. There's nobody there to be tell you what to expect and help you with what you’re going to go through emotionally. I wish somebody was there. I wish somebody was there to, you know, give me a break, give her that medicine, or force her to take that medicine. And then, my dad, I had to watch him die. He had diabetes and kidney failure, so he had a heart attack. His biggest chance was having a heart attack. And I guess the Creator decided, you know, to take him when we weren't around and it was just him and my son and the whatever support person that was there was the one on the phone talking to me” (26-27, 1207-1265). 80 It is critical to understand that through this story and experience, the greatest need shared was to ‘have somebody there’ for the varied and complex caregiving support. The so-called caregiver burden is evident as they struggled to care for their loved ones without any support from family, community, community health services, and provincial or urban services. This story provides significant findings of how critical community-based navigators, as envisioned by Esk̓étemc, can support Esk̓étemc in their final journeys as individuals and when caring for loved ones. Another individual shared how a community-based navigator may provide supports to avoid burnout stating, “Nobody’s going to be there to help us and it was getting exhausting rotating between the three of us trying to figure out how to help my C****. These things are important for people's mental health because now I'm on mental health leave right now because sometimes I just can't handle what happened back here with my parents” (27, 1282-1292). The burnout experienced by caregivers persisted throughout the stories shared as the role of the caregivers ranged from at-home supports, transportation, doctor visits, and many other day-to-day supports. 4.3.1 Community-Vision: Community-Based Navigators Esk̓étemc continued to explore how the Nav-CARE intervention may fit within the community. There were many nuances in perspectives that suggested it may fit. Overall, we found that there was a need for a team of community-based navigators. One participant shared, “Ya. Because if someone is taking somebody into the hospital or taking someone to an appointment or whatever and another situation arises, there would have to be somebody else there that's going to be able to step into that. Like, your… like, we were talking, like, you know how burnt out you get when you're trying to help out your siblings and, I mean, you have to have somebody else in there. I mean, you can just kind of, like, on the outside looking in and be there for your siblings or your parents or whoever. Like, you need somebody else there that's going to carry the brunt to shoulder the load more so than just being one navigator. So, I think you'd have to have a team in that spot. That's my thought on it anyway. Keeping it in the community” (24-25, 1142-1153). 81 Another participant agreed that the scope of the community-based navigators would require a team stating, “I think we need a few, not just the one, because the navigator is going to know a lot of information, especially, you know, their allergic reactions, their history, their… what medications they're taking and everything like that, I think that's a big important thing that the nurses, like, should they need medical attention that they need to know. Other than that, that's what would be the main… my little input on the NAV-Care” (26, 1201-1205). A new perspective of the role of the navigator is shared above, and it expands the scope of a community-based navigator to include training in or a background in healthcare. This expands beyond the scope of a Nav-CARE volunteer role. 4.3.2 Paid Positions The finding of paid positions persisted throughout Esk̓étemc stories. The Community-Based Navigators, as mentioned, would require specific training or experience in healthcare and an understanding of trauma or complex trauma. The following perspective highlights this need. “Plus, also I agree with D****, we need people who can respond to this in a healthy way because if we have people responding with trauma, that's how they're going to respond with their trauma brain resident, you know, getting right in there and supporting. And also, we also have to remember family dynamics in the community because, you know, some people might not like us, some people might love us, some people don't know. So, you know, there's people that can help but they're not called on. You know? So, I think we have to look at all those different dynamics in our community. But I agree, we need… you know, to get people trained, we need somebody to respond and not just one or two people, probably four or five people who, you know, can take turns when there's a call and be able to go out and respond. And I think we have strong people here that can help us do this. You know? Because we need people with a voice to go higher up in government and we need people who know how to navigate the government funding. You know, we're talking about our little community but I'm sure there's funding out there but we need people to be able to get that funding. And, ya… and I agree with P****. Like, we need to have something in our community and we need proper training on, you know, what happens when people pass away” (28, 1328-1343). 82 This participant shares a key consideration: the Community-Based Navigators would require an understanding of trauma and specific skills, the community has people that can fulfill these roles with the proper training, and that is also beyond the scope of a Nav-CARE volunteer. We cannot limit the Nav-CARE intervention as unsuitable simply due to the need for paid positions versus volunteer roles. Esk̓étemc stories and perspectives clearly emphasize the need for paid positions to ensure the role of a Community-Based Navigator addresses the gaps experienced. As stated by one participant, “No, just the same. I like the idea of them being paid instead of volunteering. It's just the part I've come down to is someone getting paid and not sitting back here not getting that help” (23, 1074-1076). The participants identified a need for paid positions that can fulfill the community-envisioned, community-based navigator role but the vision persists beyond being solely an intervention; it extends to a need to re-establish community roles and responsibilities. The first Talking Circle presented potential for the Nav-CARE being adapted for Esk̓étemc based on their perspectives and practices shared. The intervention was recognized as a need in community. As the data were carefully analyzed and with the guidance of the Esk̓étemc Advisory Group it was realized that the community needs persisted beyond a healthcare intervention solely. One perspective shared by a young person in the Talking Circle re-grounded the analysis lens and centered the need to re-establish community roles and responsibilities. They shared, “So, I'm really hoping that something like this can get put in place for now and then for our future. Because if we don't, I mean, like, what are we going to do? What is my generation going to do? We're going to be, like, stuck and not knowing. So, I'm, like, really praying this can happen for everyone, all of you, myself, and my kids. Because I worry about my kid's future already and, like, they're only 3 and under. So, I don't know, I'm really excited to see where your report goes, and I'm really happy that I came here. I stayed longer than I should've because I really, like, didn't think of this stuff but it's really 83 opened my eyes to, like, you know, reach out to my generation and let them know, like, you know, we should be attending these things” (34, 1606-1614). Throughout each of the Talking Circles we found that younger generations do not participate in illness and end-of-life practices like previous generations who were exposed at younger ages. Esk̓étemc have a desire to re-establish the passing of teachings and practices throughout all generations as discussed in Talking Circle 2 as well. This may begin with a healthcare intervention, but the ultimate goal is to return to Esk̓étemc practices for caring for one another through illness and at the end of life by re-establishing community roles and responsibilities. Due to colonial legacies, these responsibilities are minimally met by healthcare providers and institutions such as hospitals or long-term care facilities. Esk̓étemc want to see each other return to families helping families, as stated, “We need the community to get together again. We need the community to be back together, so by the time it's my turn, everybody is going to be coming to my family and saying, "What can I do for you? Here's what I can do for you." Even if you just come sit with my daughters, you know, that means something. So, I think coming into something like this and opening it up and letting people see that we do still feel all of this, that we can do something about it. We can help someone make it easier for them. Thank you” (35, 1671-1677). A model of community-based navigation is needed to support Esk̓étemc access and navigation of the current healthcare system. Esk̓étemc practices for caring for one another must supersede the need for such models and continue to resist colonial efforts of erasure of Esk̓étemc self-determination in relation to collective health. Overall, the key messages revealed in these research findings signify important steps to achieving this level of autonomy that support Esk̓étemc’s uniquely local understanding of caring for one another at the end of life. Esk̓étemc ideas and values are rooted in the practices and protocols for caring for one another are critical to developing a comprehensive, community- 84 based and funded navigation team that fosters the re-establishment of traditional roles and practices in caring for family at the end of life’s journey. 85 Chapter 5: Discussion This research journey was transformative for me as a student learner doing research and an individual because of the relationships built with Esk̓étemc and the opportunity to sit in a space of trust and vulnerability to support changes for the better, and for one another. Throughout this journey, I have situated myself within this research as a Secwépemc learner seeking to gain an understanding of how the Nav-CARE intervention may be adapted to or made suitable for the Esk̓ét community and the Esk̓étemc Peoples. This Indigenous-led research partnership resulted in an opportunity to employ a Secwépemc Research Methodology. Grounded in local epistemologies, through the use of local language, of Knucwentwécw guided our research enquiry. Esk̓étemc members were all familiar with this important worldview and could share their stories of living with or caring for someone with severe chronic illness or at the end of life and to deliberate on whether navigation might be helpful in their context. Orienting this work in our language, a verb-based action-oriented worldview, helped me to situate this work in Secwepemctsín. The translation of Knucwentwécw is ‘a group of people helping each other.’ The use of Knucwentwécw as an Indigenous Research Methodology correlates to a process that actualizes ‘many people to help each other.’ The process of Knucwentwécw is that many people unite for a common purpose, share knowledge in a safe space and find balance or understanding and resolution of a matter. These teachings have come from individuals such as Doreen M. Johnson, Dr. Jeannette Armstrong, and passed on from ancestors since time immemorial. In the collective, Knucwentwécw occurred organically when Esk̓étemc gathered in a group or in ceremony. This required members to listen intently to circle protocols, the circle question and purpose, and then take turns sharing their knowledge and stories while listening respectfully to one another. The Knucwentwécw methodology is a natural 86 and inherent way of being for Esk̓étemc as exemplified by their use of ceremony at gatherings, family functions and community interactions passed down through time. Though there were times the conversations led to other topics, the embodiment of Knucwentwécw proved to be a positive and impactful Indigenous research methodological approach when working with Esk̓étemc members. Knucwentwécw honors sharing and openly interacting with one another to have consensus-based discussions to help participants and researchers understand the research questions from within their own experiences. As a Secwépemc learner embarking on research, the understanding of Indigenous palliative care found in the literature was defined primarily from the lens of researchers, and typically by non-Indigenous researchers, representing data from various Indigenous communities and healthcare settings. The experience of working with Esk̓étemc to understand this research topic illuminated what was found in the literature. The Talking Circles methods created space for Esk̓étemc to share their living and lived experiences and the injustices individuals and their loved ones have endured when accessing supports for illness and palliative or end-of-life care. The findings from the collective Talking Circles reaffirm the general, overarching themes within the literature but also helped to uncover distinct teachings, sacred protocols and practices, not discussed in findings from other research that has been conducted. More importantly, the opportunity to envision an Esk̓étemc model of community-based navigating and caring for one another that surpasses the narrow scope of a Western healthcare medical intervention. 5.1 Discussion Points Identified by Esk̓étemc Voices Three significant discussion points were uncovered in the Talking Circles, which were mirrored in the literature, and will be further discussed alongside Esk̓étemc unique and local understanding of caring for one another at the end of life. Esk̓étemc ideas and values align with 87 much of the evidence but provide a distinct and local significance of this growing area of research with Indigenous Peoples. The discussion points from this research were: 1) Esk̓étemc practices and protocols for caring for one another are critical to palliative and end-of-life care but remain impacted by colonial legacies. 2) A comprehensive, community-based and funded navigation team is necessary to support Esk̓étemc address current gaps in care and caring for one another. 3) The re-establishment of community roles and practices are essential to a community-based model of palliative care. I will expand on these discussion points, the key ideas and experiences that produced these, and the alignment of the findings to the literature in the next section. 5.2 Esk̓étemc practices and protocols for caring for one another are critical to palliative and end-of-life care but remain impacted by colonial legacies. 5.2.1 Importance of Traditional Practices Sacred knowledge of how Esk̓étemc conduct ceremonies and care for their loved ones through illness and at the end of life was woven throughout stories in each of the Talking Circles. An important finding from the work is about the multitude of ways Esk̓étemc continue to practice ceremonies, follow significant protocols for illness and end-of-life practices, and seek to pass on the teachings throughout the generations. This finding aligns with the literature as it states the importance of passing on traditions, cultural values, and beliefs, and the passing of traditional ceremonies is essential at the end of life for Indigenous Peoples (Kelley et al., 2018). A key aspect of this finding was the impact of colonial legacies on traditional practices. As shared by Esk̓étemc Elders, they felt they did not have control of their lives within, and outside of community, as shared by Esk̓étemc Elders. Younger generations of Esk̓étemc also shared the 88 impact they experienced, having differing knowledge of traditional practices and beliefs compared to their parents and grandparents. Esk̓étemc shared that many families have mixed religions and Esk̓étemc beliefs which is a result of the direct impact of Indian Residential Schools. The literature says that some Indigenous people have mixed practices at the end of life, and some disregard traditional practices altogether (DeCourtney, et al., 2010). Esk̓étemc traditional practices of caring for one another also vary depending on generations and whether individuals grew up in the community or away. 5.2.2 “I Wouldn’t Want to be Anywhere Other than Esk̓ét” (2, 37-29) A second finding identified from Esk̓étemc stories was the positive experiences of caring for loved ones in community. These experiences include family gatherings to conduct ceremonies to support a loved one on their journey whether through illness or at the end of life. The literature also shared the importance of community and sense of home for appropriate end-of-life care (Vincent, 2019). The ability to keep loved ones living with advanced chronic illness at home in community is important and preferred but limited due to various barriers that represent other significant findings. Many Esk̓étemc live away from community and must access the same care as the general population. It was determined that those who live away from their community do not feel well supported in urban healthcare settings and do not have access to financial resources or cultural supports. This finding agrees with the literature that says colonial practices remain in healthcare service delivery (Hordyk, et al., 2017). Esk̓étemc are unable to access culturally appropriate care in urban healthcare settings and, as a result, are calling for recognition of traditional practices and holistic supports. Importantly, we cannot allow colonial structures and legacies to determine or impact how Esk̓étemc receive care based on their residence. 89 5.2.3 Lack of Culturally Appropriate Care The findings also indicate that Esk̓étemc who must leave community or choose to access care Western healthcare, experience several challenges. There are fears of not receiving care that Esk̓étemc deem as safe, and these fears have led to increased negative perceptions of accessing care outside of community. This agrees with the literature findings that reveal when Indigenous persons must travel for care there are limited cultural understandings and limited access to culturally safe care in urban settings (Habjan, et al., 2012). Esk̓étemc shared many stories of experiences of racism, negative patient and healthcare-provider interactions and care that was not culturally appropriate due to Western Healthcare practices. These experiences have caused delays in accessing care outside of community and have resulted in late diagnoses and often terminal diagnoses by the time loved ones go to the emergency room at the nearest hospital. This finding does agree with the literature which indicates that relocation outside of community is frightening due to experiences of alienation, loneliness, language and communication barriers, and dying away from ones’ home (Castelden, et al., 2010; Galloway et al., 2024). Though there were many shared stories of caring for one another, the care was often specific to the end of life in the community because of the fear of leaving the community. Some Elders believe that seeking healthcare away from community during the palliative care stage condemns them to dying alone in a stark and sterile environment. 5.3 A comprehensive, community-based and funded navigation team is necessary to support Esk̓étemc and address current gaps in care and caring for one another. 5.3.1 Jurisdictional Barriers: Federal and Provincial Governments Jurisdictional and palliative-specific resource barriers that limit palliative and end-of-life care service delivery and capacity in Esk̓ét were key experiences that were shared. Jurisdiction 90 barriers refers to the impacts of federal and provincial legislation, policies, and structures. This aligns with the literature that outlines how jurisdictional disputes between federal and provincial governments and health authorities result in poorly resourced community-based palliative care for Indigenous Peoples (Nadin, et al., 2017). Esk̓étemc shared that community-based services such as homecare or medical transportation were difficult to access and often did not meet the needs of themselves or loved ones. Esk̓étemc shared stories of having to access care facilities outside of community to ensure their loved ones would receive proper care when families could no longer provide care in advanced stages of illness. These findings agree with the literature as current available resources, policies, and jurisdictional disputes influence community-based services and more so, contribute to the lack of community-based palliative and end-of-life care. 5.3.2 Healthcare Standards The importance of Esk̓étemc developing their own community-based model to address palliative care gaps in caring for one another is a key finding. Their ability to do so is limited due to current healthcare practices and policies. The literature says that there is currently no standard for Indigenous palliative care in Canada (Prince, et al., 2019). It is evident that current healthcare standards in Canada do not support community-based models, programs, resources or guidelines that will increase culturally appropriate care for Indigenous Peoples. Recently, the Framework on Palliative Care in Canada was released; it acknowledges the lack of engagement with Indigenous Peoples and a commitment to develop an Indigenous Palliative Care Framework that is distinctions-based (Government of Canada, 2024). The research team found that, to address this barrier, an Esk̓étemc navigation team that is well-resourced would be a positive and innovative strategy. This finding is supported by the literature pointing to the importance to develop 91 innovative community-based programs that may include the family and community (Nelson et al., 2024). Esk̓étemc envisioned their own community-based team. 5.3.3 Patient Navigation Patient Navigation and the potential for a community-based model of navigation to address gaps in palliative care was explored with Esk̓étemc. The literature promotes patient navigation as a positive method to support Indigenous Peoples when accessing healthcare services and facilities. The typical Aboriginal Patient Navigator Role is intended to “cultivate a relationship between the Indigenous patients and their healthcare providers to ensure cultural safety in the clinical encounter” (PHSA, 2025). Though Aboriginal patient navigation is deemed promising, a finding from Esk̓étemc suggests that Indigenous Patient Navigators in hospital settings did not support a culturally appropriate experience or address gaps in care. Individuals shared negative experiences of seeing an Indigenous Patient Navigator once for an initial check-in, but they had no follow-up throughout their time in hospital. Moreover, they had no understanding of the role of the Navigator because it was not communicated to them. Thus, the Esk̓étemc findings did not agree with the literature surrounding Aboriginal/Indigenous Patient Navigation’s role in healthcare facilities or care homes. Instead, the findings suggest that an Esk̓étemc model of community-based navigation would be a preferable alternative. An Esk̓étemc model of community-based navigation would include a team of paid Esk̓étemc Navigators to ensure the palliative care provided would be feasible and sustainable. To address current gaps in care, Esk̓étemc envisioned a team of Navigators that would have a broad scope of experience or training to include: - On-call and available 24/7 - Trained by community 92 - Available to coordinate or provide cultural supports - Help individuals and their families navigate resources and the healthcare system including diagnoses and care plans - Integrate traditional healing - Provide companionship to individuals living with advanced illness - Support for families - Available to travel to Esk̓étemc in urban areas - Provide transportation The elements described above indicate that the Esk̓étemc model for community-based navigation would be comprehensive and ensure individuals are well cared for. It would also ensure that caregivers do not experience burnout and are well supported as families traditionally helped one another through illness and end-of-life experiences. The Esk̓étemc community-based navigation model was used as the basis for supporting the exploration of how another model of navigation, Nav-CARE, may be suitable for the community. As previously explained, Nav-CARE is a volunteer-based model of navigation supported by community funding sources that has been widely successful in improving the quality of life for persons living with advanced chronic illness in various non-Indigenous communities across Canada. Nav-CARE volunteers provide supports similar to those identified in the Esk̓étemc community-based model of navigation such as providing companionship, supporting in navigating a person’s illness and healthcare needs, and accessing resources. Though similar, we found that Esk̓étemc did not support adapting Nav-CARE to the community and instead preferred to build their own traditional model. 93 Findings from the literature state that when developing culturally appropriate palliative and end-of-life care for Indigenous Peoples, it must be done in partnership and by using a strength-based approach that builds upon current community-based practices (Nadin, et al., 2017; Vincent, et al., 2019). The present research was done in partnership with Esk̓étemc to see if Nav-CARE could be adapted to their needs and build upon their ways of caring for one another. Esk̓étemc determined that the Nav-Care intervention for palliative and end-of-life care could not be imposed on the community. Further, Esk̓étemc determined that, due to limited resources in community and the strain on families to access resources outside of community, it was critical to have paid positions within the envisioned community-based model. As the literature indicates, there are extensive barriers for Indigenous communities; they include geography, availability of services, economic barriers, systemic barriers, and specific needs of Indigenous communities (Isaccson & Lynch, 2018). Nav-CARE as a Western model did not align with Esk̓étemc in part because of its reliance on volunteerism, but it may be suitable for communities in different geographies and with greater access to resources. Esk̓étemc ways of caring for one another is grounded in companioning to improve quality of life, similar to Nav-CARE, but the latter is not feasible for Esk̓étemc. 5.4 The re-establishment of community roles and practices is essential to a community-based model of palliative care. 5.4.1 Importance of Family and Community Involvement The importance of the role of the family and community in caring for one another through illness and at the end of life was a primary and important finding from our work. This agrees with the literature as others share findings that an essential component of culturally appropriate palliative and end-of-life care is family involvement (Schill & Caxaj, 2019; Shahid et al., 2018). 94 Esk̓étemc shared the feeling of an inherent responsibility to one another whereby children and grandchildren take on the role of caregiver when a loved one is living with an advanced chronic or terminal illness. Esk̓étemc Caregivers shared stories of struggling to care for their loved ones due to work and school or otherwise contemporary duties within Western society that interfered with traditional practices. Similarly, the literature indicates that the role of the family extends beyond the day-to-day caring tasks to bridging traditional and modern caregiving practices (DeCourtney, et al., 2010). Esk̓étemc experienced immense caregiver burden and grief as they supported loved ones with limited resources and supports for day-to-day tasks like food preparation, personal care, appointments, and interpersonal relationships. Colonial legacies fractured traditional caring practices and the passing of knowledge throughout generations. We found that younger generations felt this fracture when caring for their loved ones as they did not feel supported and often took on the role of Caregiver alone. The literature indicates that at times of illness and at the end of life, it was a time for many people to be involved to support the individual and their family (Kelly, et al., 2009). Esk̓étemc matriarchs and Elders recount their lived experience of families helping one another and the whole community coming together at the end of life to conduct ceremony when they were growing up in Esk̓ét. All generations expressed the need to re-establish the community roles and passing of teachings. A community-based model of navigation could address this need by delivering training to members to provide the supports identified above and to facilitate families and community helping one another again. 95 5.5 Limitations The limitations of the research were twofold and interconnected:1) research processes and 2) institutional barriers. The research was funded by Health Canada which sets limitations in the research processes. The research team was accountable for meeting Health Canada’s deliverables, rather than on the research process being solely controlled by Esk̓étemc. In addition, as a master’s degree-level research project, we initially developed the research proposal and processes rather than engaging Esk̓étemc from the onset of constructing the project. This is also an institutional barrier, because as UBC graduate program requirements include securing a supervisor and having a research focus prior to program application. The requirement does not provide an easy pathway for Indigenous-focused research. These were lessons learned along the way, but the changes made were supported by UBCO as the research progressed. These changes included the development of a Research Agreement that met OCAP Principles and Esk̓étemc Traditional Knowledge and Research Ethics Policy guidelines, the approval of a committee member to serve as a Co-Supervisor, and the inclusion of graphic images as visual tools in the writing of the thesis found in Chapter 4. Another element of the research process that was limited was data analysis. The research did not include co-analysis with Esk̓étemc participants due to the volume of data collected and number of participants. This resulted in analyzing the data through the lens of the research team, who include Indigenous and non-Indigenous individuals. Having a collaborative approach to analysis may have identified other findings from an Esk̓étemc lens. The graduate student timeline is an additional institutional barrier to applying Indigenous research principles and practices that would foster this type of collaborative analysis practice. Institutions must ensure OCAP Principles and Indigenous community policies and protocols for research are adhered to 96 and allow for fulsome research timeframes to conduct co-analysis with adequate resourcing such as funding, research supports, and internal institutional processes. Another limitation that was uncontrollable; that is, the research was completed during a global pandemic. However, I was still able to conduct the Talking Circles in person and therefore, it did not impact the richness of the research. Another limitation that is important to conclude this section with is that due to the limited number of participants and the distinct focus on one unique population, the findings of this study are not generalizable to larger Indigenous populations and should be used with caution. 5.6 Implications for Community-Based Care, Policy and Programming, and Future Research Considerations The research findings present significant characteristics of what constitutes culturally safe palliative and end-of-life care and a practical framework for a comprehensive, community-based funded team of navigators for Esk̓étemc. This thesis may be used to guide the application of funding and resources for community-based initiatives and contribute to a growing area of literature that will address jurisdictional requirements that act as barriers. It is these barriers which produce and sustain Indigenous-specific racism and day-to-day discrimination that individuals, their families, and communities continue to face (Bourque Bearskin et al., 2024). The findings are specific to Esk̓étemc, but they are consistent with findings from other Indigenous communities and amplify what is already known. 5.6.1 Community-Based Care This research presents a potential framework for other Nations to explore in their own search for community-based models of care that would address palliative and end-of-life care gaps experienced by Indigenous Peoples. By developing community-based models of care, 97 communities would be prepared to submit readiness and need assessments for funding allocation opportunities. The framework that Nations may use would be composed of the core findings of this research, such as: - Traditional practices, protocols and beliefs for caring for one another - Barriers to accessing care - Community and external care gaps - Community-based needs - Community-based model comprised of contemporary and Nation-based practices The framework would support distinctions-based approaches to developing culturally appropriate palliative and end-of-life care for communities. Distinctions-based approaches refer to the recognition that Indigenous Peoples have unique cultures, languages and beliefs versus a pan-Indigenous approach that is the same for all Indigenous Peoples. Current funding models provide funding that only accounts for those who live in community but as we have found in this research, funding is needed for all members regardless of where they reside. 5.6.2 Policy & Programming Implications This research study provides further evidence that current palliative and end-of-life care for Indigenous Peoples is unavailable, inadequate, and culturally inappropriate. The findings and those from other Indigenous-led research projects within this research topic could serve as the basis for developing First Nations Principles for culturally appropriate and safe palliative and end-of-life care. The principles may then guide the development of standards for Indigenous Palliative Care in Canada to address core gaps. The following list includes potential principles for policy development: 98 1) Recognizing inherent Indigenous rights to healthcare, language and culture to establish their own unique needs and; 2) Indigenous Peoples feeling safe to practice their ways of caring for one another including ceremony in urban and Western healthcare provider settings and; 3) Be resourced for community-based models of care that integrate community practices, protocols, beliefs and ultimately meet the needs of community members and; 4) Provide adequate funding to support members who do not live in community to access culturally appropriate supports in urban settings and to return home as determined by individuals and families. 5.6.3 Future Research Considerations Considerable care was taken as we partnered with Esk̓étemc in this research project, however, lessons for research with Indigenous Peoples were learned through the research journey. Indigenous Peoples may consider integrating these priority actions in their research practices: - Prioritize relationship building with community and community members - Include meaningful collaborative processes such as Research Agreements, Community Representatives as Co-Supervisors, and establishment of Advisory Committees - Collaborate with communities in the construction of research projects, including formulating the research questions - Identify local Indigenous Research Methodologies to support data collection and analysis - Sign all ownership, control, access, and possession rights to the data and knowledge dissemination to the community or Nation 99 Institutions will benefit from these minimal standards of practices while building ethics processes, program requirements and program applications, and designing evaluations for current research practices. In this way, academia may begin its transformation of its typical trajectory throughout graduate programs and faculty positions by honouring Indigenous knowledges, laws, and protocols and considering current faculty or tenure trajectories informed by local Indigenous host Nations where institutions are located. Through an Indigenous lens, knowledge is not owned individually but shared. The harm caused to Indigenous Peoples by Western academia has required the protection of Indigenous knowledges through ownership principles such as OCAP to protect sacred knowledge. Knowledge ownership in this context is important, but goes against Indigenous values of knowledge dissemination. 5.7 Conclusions The research journey with Esk̓étemc was incredibly profound and a privilege to embark on. At the onset of this research journey, the Nav-CARE model held promise that it would be a suitable model for Esk̓étemc. The data collection method of sharing living and lived experiences transformed the intended outcomes of this research. Through the three Talking Circles we heard that the way Esk̓étemc care for one another through illness and at the end of life is grounded in sacred teachings and practices. The community envisions a community-based navigation system consisting of a team of paid positions to support individuals and families through illness and at the end of life. However, there is a strong desire to re-establish traditional roles that have persisted since time immemorial, and such a navigation system could contribute to the revival of these roles. Woven throughout these discussions was also the significant colonial legacy that impacts Esk̓étemc. Among the adverse effects are the day-to-day barriers and challenges, the 100 systemic racism and harm experienced in healthcare settings, and the caregiver grief that is all too consuming to endure alone. Esk̓étemc are calling for action to achieve self-determination in relation to the sovereignty of health service delivery. This includes funded Esk̓étemc palliative and end-of-life care to support members living in community and those who may live away or need supports when care cannot be accessed in community. The findings of this research pave a path forward to develop such a model and contribute to wise practices known as evidence informed that come from the key lessons of the Esk̓étemc Peoples when conducting Indigenous-led research. Finally, the colonial legacies that were found in all aspects of living with or caring for a loved one with severe chronic illness must be dismantled – foremost, the legacy of systemic racism. I would like to recognize Elder and Matriarch Marlene Robbins from Esk̓ét who shared her lived experience with us through the Talking Circles and urged action to ensure individuals and families are supported during this critical time. 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Bridging the healthcare divide with patient navigation: Development of a research program to address disparities. Clinical Journal of Oncology Nursing, 11(5), 633–639. https://doi.org/10.1188/07.CJON.633-639 Seow, H., Vautour, J., Bishop, V., Antone, C., Belleau, T., Corbiere, B., Fruch, V., McCormick, L., Monture, L., Civak, M., Jyothi Kumar, S., McMillan, K., Bainbridge, D., & Cano, R. 114 (2024). Supporting the journey home: The process of co-designing an education program to strengthen palliative care capacity in first nations communities.International Journal of Indigenous Health, 19(1), 1-16. https://doi.org/10.32799/ijih.v19i1.40944 Shahid, S., Taylor, E. V., Cheetham, S., Woods, J. A., Aoun, S. M., & Thompson, S. C. (2018). Key features of palliative care service delivery to indigenous peoples in australia, new zealand, canada and the united states: A comprehensive review. BMC Palliative Care, 17(1), 72-72. https://doi.org/10.1186/s12904-018-0325- Sheppard, A. J. (2020). “In a good way”: Going beyond patient navigation to ensure culturally relevant care in the cancer system for first nations, inuit, and métis patients in ontario. International Journal of Indigenous Health, 14(2), 293-306. https://doi.org/10.32799/ijih.v14i2.31995 Smith, L. T. (2012; 2013; 2016). Decolonizing methodologies: Research and indigenous peoples (2nd ed.). London; New York: Zed Books. Smylie, J. (2005). The ethics of research involving canada's aboriginal populations.Canadian Medical Association Journal (CMAJ), 172(8), 977; author reply 977-977. https://doi.org/10.1503/cmaj.1041676 Starblanket, D., Lefebvre, S., Legare, M., Billan, J., Akan, N., Goodpipe, E., & Bourassa, C. (2019). Nanâtawihowin âcimowina kika-môsahkinikêhk papiskîci-itascikêwin astâcikowina [Medicine/Healing stories picked, sorted, stored]: Adapting the collective consensual data 115 analytic procedure (CCDAP) as an indigenous research method. International Journal of Qualitative Methods, 18, 160940691989614. https://doi.org/10.1177/1609406919896140 Statistics Canada. (2020, January). 2016 Census Aboriginal Community Portrait – Canada. Retrieved from: https://www12.statcan.gc.ca/census-recensement/2016/dp-pd/abpopprof/infogrph/select.cfm?Lang=E Statistics Canada. (2022, September). Statistics on Indigenous Peoples: 2021 Census of Population, Indigenous Population. Retrieved from: https://www150.statcan.gc.ca/n1/daily-quotidien/220921/dq220921a-eng.htm?indid=32990-1&indgeo=0 Stein, S. (2020). 'Truth before reconciliation': The difficulties of transforming higher education in settler colonial contexts. Higher Education Research and Development, 39(1), 156-170. doi:10.1080/07294360.2019.1666255 Stjernswärd, J., Foley, K. M., & Ferriss, F. D. (2007). The public health strategy for palliative care: Advancing palliative care: The public health perspective. Journal of Pain and Symptom Management, 33(5), 486-493. Tremblay, M., Graham, J., Porgo, T. V., Dogba, M. J., Paquette, J., Careau, E., & Witteman, H. O. (2020). Improving cultural safety of diabetes care in indigenous populations of canada, australia, new zealand and the united states: A systematic rapid review. Canadian Journal of Diabetes, 44(7), 670-678. https://doi.org/10.1016/j.jcjd.2019.11.006 116 UN General Assembly (2007). United Nations Declaration on the Rights of Indigenous Peoples : resolution / adopted by the General Assembly. Retrieved from: https://www.refworld.org/legal/resolution/unga/2007/en/49353 Valaitis, R. K., Carter, N., Lam, A., Nicholl, J., Feather, J., & Cleghorn, L. (2017). Implementation and maintenance of patient navigation programs linking primary care with community-based health and social services: a scoping literature review. BMC health services research, 17(1), 116. https://doi.org/10.1186/s12913-017-2046-1 Vincent, D., Rice, J., Chan, J., & Grassau, P. (2019). Provision of comprehensive, culturally competent palliative care in the Qikiqtaaluk region of Nunavut: Health care providers' perspectives. Canadian Family Physician Medecin De Famille Canadien, 65(4), e163-e169. Weber-Pillwax, C. (1999). Indigenous research methodology: Exploratory discussion of an elusive subject. Journal of Educational Thought, 33(1), 31-45. Weber-Pillwax, C. (2001). What is indigenous research? Canadian Journal of Native Education, 25(2), 166. Webkamigad, S., Rowe, R., Peltier, S., Froehlich Chow, A., McGilton, K. S., & Walker, J. D. (2020). Identifying and understanding the health and social care needs of indigenous older adults with multiple chronic conditions and their caregivers: A scoping review. BMC Geriatrics, 20(1), 145-145. https://doi.org/10.1186/s12877-020-01552-5 Wilson, D. D., & Restoule, J. (2010). Tobacco ties: The relationship of the sacred to research. Canadian Journal of Native Education, 33(1), 29. 117 Wilson, S. (2008). Research is ceremony: Indigenous research methods. Fernwood Publishing. Whop, L. J., Valery, P. C., Beesley, V. L., Moore, S. P., Lokuge, K., Jacka, C., & Garvey, G. (2012). Navigating the cancer journey: A review of patient navigator programs for indigenous cancer patients. Asia-Pacific Journal of Clinical Oncology, 8(4), e89-e96. https://doi.org/10.1111/j.1743-7563.2012.01532.x 118 Appendices Appendix A: First Nations Health Authority 7 Directives (First Nations Health Authority, 2021). Directive #1: Community-Driven, Nation Based The Community-Driven, Nation-based principle is overarching and foundational to the entire health governance arrangement. Program, service and policy development must be informed and driven by the grassroots level. First Nations community health agreements and programs must be protected and enhanced. Autonomy and authority of First Nations will not be compromised. Directive #2: Increase First Nations Decision-Making and Control Increase First Nations influence in health program and service philosophy, design and delivery at the local, regional, provincial, national and international levels. Develop a wellness approach to health including prioritizing health promotion and disease and injury prevention. Implement greater local control over community-level health services. Involve First Nations in federal and provincial decision-making about health services for First Nations at the highest levels. Increase community-level flexibility in spending decisions to meet their own needs and priorities. Implement the OCAP (ownership, control, access and possession) principle regarding First Nations health data, including leading First Nations health reporting. Recognize the authority of individual BC First Nations in their governance of health services in their communities and devolve the delivery of programs to local and regional levels as much as possible and when appropriate and feasible. Directive #3: Improve Services Protect, incorporate and promote First Nations knowledge, beliefs, values, practices, medicines and models of health and healing into all health programs and services that serve BC First Nations. Improve and revitalize the Non-Insured Benefits program. 119 Increase access to primary care, physicians, nurses, dental care and other allied health care by First Nations communities. Through the creation of a First Nations Health Authority and supporting a First Nations population health approach, First Nations will work collectively to improve all health services accessed by First Nations. Support health and wellness planning and the development of health program and service delivery models at local and regional levels. Directive #4: Foster Meaningful Collaboration and Partnership Collaborate with other First Nations and non-First Nations organization and governments to address social and environmental determinants of First Nations health (e.g. poverty, water quality, housing, etc.). Partnerships are critical to our collective success. First Nations will create opportunities through working collaboratively with federal, provincial, and regional partners. Foster collaboration in research and reporting at all levels. Support community engagement hubs. Enable relationship-building between First Nations and the regional health authorities and the First Nations Health Authority with the goal of aligning health care with First Nations priorities and community health plans where applicable. Directive #5: Develop Human and Economic Capacity Develop current and future health professionals at all levels through a variety of education and training methods and opportunities. Result in opportunities to leverage additional funding and investment and services from federal and provincial sources for First Nations in BC. Result in economic opportunities to generate additional resources for First Nations health programs. Directive #6: Be Without Prejudice to First Nations Interests Not impact on Aboriginal Title and Rights or the treaty rights of First Nations, and be without prejudice to any self-government agreements or court proceedings. Not impact on the fiduciary duty of the Crown. Not impact on existing federal funding agreement with individual First Nations, unless First Nations want the agreements to change. 120 Directive #7: Function at a High Operational Standard Be accountable, including through clear, regular and transparent reporting. Make best and prudent use of available resources. Implement appropriate competencies for key roles and responsibilities at all levels. Operate with clear governance documents, policies, and procedures, including for conflict of interest and dispute resolution. 121 Appendix B: Consent Form Participant Information and Consent Form for Adapting Nav-CARE for Indigenous Populations: A Feasibility Study Principal Investigator: Dr. Barbara Pesut, PhD RN, Professor School of Nursing, Principal Research Chair, Palliative and End of Life Care, University of British Columbia, Ph:250-807-9955 Co-Investigator(s): Dr. Lisa Bourque-Bearskin, PhD RN, Associate Professor School of Nursing, School of Nursing, Thompson Rivers University, Ph:250-828-5056 Dr. Dixon Sookraj, PhD, Associate Professor Social Work, Faculty of Health and Social Development, University of British Columbia, Ph:250-807-8703 Ms. Cara Basil, BA, Master of Arts Student, Irving K Barber Faculty of Arts and Sciences, University of British Columbia, Ph:250-457-1808 IMPORTANT NOTE: All participants must be vaccinated and provide proof of vaccination via BC Vaccine Passport to participate in this study. Who is funding this study? The study is being funded by Health Canada. Why are we doing this study? Indigenous communities lack adequate palliative and end of life care in community. We want to learn more about Indigenous peoples experiences of living with a chronic illness or caring for family members with chronic illness in their community to determine if a community-based navigation program is useful and how it can further support caring for loved ones. You are being invited to take part in this research study because we are looking for research participants who: are members of an Indigenous community, have experience living with a serious chronic illness or experience caring for a family member with a serious chronic illness. 122 What happens if you say “Yes, I want to be in the study”? You will participate in 4 separate talking circles for a total of 9-12 hours. Your participation in the talking circles will include sharing your story of living with a chronic illness or caring for family members with chronic illness, sharing what things are missing in the community to provide better care to those living with advanced chronic illness and sharing a vision of what an Indigenous community-based navigation model looks like. The talking circles will be audio-taped to ensure we capture your words adequately. The audiotapes will be used solely for note-taking purposes and under the sole ownership of Esk’etemc. It is important to note that by participating in this study in-person, there are Covid-19 risks. During each of the talking circles we will conduct safety protocols to protect the health and wellness of everyone involved including: • Conducting Covid-19 Health Checks upon arrival at each talking circle • Use of Personal Protective Equipment as required (masks, hand sanitizers, etc.) • Maintaining physical distancing between participants (2 Metres) • Staying home if you are ill and/or stopping a talking circle if someone becomes ill How will the research results be used? The results of this research will be determined by the research findings. Possible research products will include the research findings being reported in the Master’s thesis of Cara Basil which may be published in journal articles and books. The thesis will be available to the public online through UBC cIRcle, however, Esk’etemc may request that it be withheld from the public domain as the owners of the research data. The research findings will also be used to develop a report for Indigenous community-based palliative navigation. What are the potential benefits of the study? There are no explicit personal benefits by participating in this study. A potential benefit, however, is to feel empowered to share your experiences of living with a chronic illness or caring for a family member with a chronic illness. Your stories will help the researchers understand what is needed to develop a community-based navigation program and be shared across Indigenous communities to support one another. If you would like to directly receive the final results of this study, please provide your contact details at the bottom of this form. We will be in touch and share all research results with you. What are the potential risks of the study? It is a priority of this study to make sure you are not harmed during the study. Some of the questions asked may be sensitive questions. If you are not comfortable with any of the questions asked, you do not have to answer and may withdraw your participation at any time. We understand that potential risks of these questions may raise issues or feelings that you would like support in dealing with. If this happens, let the researcher know and we can refer you to community resources to support you. How will your privacy be maintained? 123 It is your choice if you would like to have your identity shared in the study reports. If you choose to not have your identity shared, we will protect your privacy and keep your identity confidential. Your privacy will be maintained by not identifying participants by name in any of the study reports, locking all video recordings and notes in a secure filing cabinet that only the research team has access to, and keeping all electronic copies on secured computers that are password protected. How will the study reports be used in the future? The study reports will be used to support Indigenous communities develop community-based navigation programming tailored to meet their community’s unique needs. This means that the study reports will be shared with other Indigenous communities through the First Nations Health Authority, Health Canada, and the University of British Columbia. Overall, the study reports will contribute to learning more about Indigenous communities needs to support those living with advanced chronic illnesses. The study’s findings may be re-analyzed at a later point if Esk’etemc chooses to do so as owners of the data. Will you be paid for your time in this study? We will pay you for your time in this study through an honorarium of $75 per talking circle. Who can I contact if I have any questions? If you have any questions or desire further information with respect to this study, please contact Barbara Pesut (250-807-9966; email: barb.pesut@ubc.ca) or Cara Basil (250-457-1808; email: cara.basil@ubc.ca). Who can I contact if I have complaints about the study? If you have any concerns or complaints about your rights as a research participant and/or your experiences while participating in this study, contact the Research Participant Complaint Line in the UBC Office of Research Ethics toll free at 1-877-822-8598 or the UBC Okanagan Research Services Office at 250-807-8832. It is also possible to contact the Research Complaint Line by email (RSIL@ors.ubc.ca ). When calling, please reference the study number H21-00065. Participant consent and signature: Taking part in this study is entirely up to you. You have the right to refuse to participate in this study. If you decide to take part, you may choose to pull out of the study at any time without giving a reason and without any negative impact. Your signature below indicates that you have received a copy of this consent form for your own records. Your signature indicates that you consent to participate in this study. Your signature indicates that you consent to notifying the research team if you develop Covid-19 symptoms and/or test positive for Covid-19 during this study. 124 Your signature indicates you consent to including your demographics, below, in this study. Participant Demographics: Age: _________________________________ Gender: _________________________________ Place of Residence: _________________________________ ____________________________________________________ Participant Signature Date ____________________________________________________ Printed Name of the Participant signing above Do you consent to having each talking circle audiotaped for notetaking purposes? Please circle: YES NO Please provide your contact details that will be used for: • Covid-19 contact tracing, if a research participant develops Covid-19 symptoms or tests positive for Covid-19 • Sharing the results of this study and any presentations related to the study Address: _________________________________ Phone #: _________________________________ Alternative #: _________________________________ Email: _________________________________ Appendix 1 Notice of COVID-Related Risks during Research Please read this form before you consent to participate in a research study. Please also talk to the researcher about any concerns you have before signing the consent form or agreeing to participate in the research. Remember that research participants may withdraw from a study at any time, without giving a reason. Contact Tracing The researcher may be required by public health authorities to share your contact information if there is a chance that you have been exposed to COVID-19 during a study visit. You will find 125 more information about contact tracing on the BC Centre for Disease control website: http://www.bccdc.ca/health-info/diseases-conditions/covid-19/self-isolation/contact-tracing. How does contact tracing work? If public health authorities ask the researcher to provide a list of people who they have been in contact with, the researcher will be required to share your contact details. The researcher will not share information about the purpose of your contact, the name of the study, or anything about the research topic. Your contact tracing information will be kept securely and separate from deidentified research records and will be deleted 30 days after your last contact with the researcher It is important to know that because of this your anonymity will not be preserved. What if I want to withdraw from the study? If at any time you decide to withdraw from the study, the research team will only continue to store your contact information for as long as required by public health authorities. Other data you have contributed will be removed from the study when you withdraw. Risks of in-person contact during the research For research that involves in-person activities such as focus groups, interviews or observations, the researchers will be following safety plans that have been approved by the University. They include: safe use of facilities (including outdoor spaces), experimental equipment, personal protective devices, and physical distancing. If you are required to use public transit to get to or from a research location, this may increase your risk of being exposed to COVID-19. We encourage you to take all precautions, including wearing a face mask while in public, washing your hands, avoiding touching your face, and keeping a safe physical distance from others (at least 2 metres or 6 feet). Please let the researcher know if you want more information about the safety plans that have been put in place. What if I have COVID-19 symptoms or am diagnosed with COVID-19? Before every research activity, the researcher will ask each person who is present a series of questions about their health. The questions have been recommended by public health authorities, and ask about physical symptoms, if you have been in contact with people who are sick, and other questions. Based on your responses, the researcher will decide if it is safe to proceed with the inperson activity. Ensure that you keep the research team’s contact information (included on the consent form) so you can share it with public health authorities in the event that you become sick after participating in research. Thank you! Version date: July 31, 2020. For distribution to all participants engaged in in-person/face to face Behavioural and Social Sciences Research. 126 Appendix C: Advertisement to Recruit RESEARCH PROJECT WITH ESK’ETEMC Research Project Topic: Palliative Care in First Nations Communities and Navigation “My brother died in Kamloops hospital on May 30, 2018. We couldn’t drum, pray or use sage to send him on his next journey. Family was quietly crowded in his room so as not to disturb other patients. IF he died at home, it would have been in our traditional ways of washing and smudging him and drumming and singing as he passed from this earth.” –Doreen M. Johnson What to Expect if You Participate Like the story shared by Doreen, I am looking for Esk’etemc who want to share their stories about living with a family member or relative with long term sickness and/or is helping a family member or relative through the end-of-life journey. Time Commitment The research project will include talking circles to share your experiences with others and the researchers team. We are asking you to share in 4 separate talking circles for a total of 12 hours. How this Research Project and Your Participation May Help Esk’etemc Your stories will help Esket with the planning of a community-based end-of-life model to help care for one another through long term sickness. If you are interested in participating or have any questions about the study, please contact: Cara Basil, Master of Arts Student, University of British Columbia Ph: 250-457-1808, Email: cara.basil@ubc.ca A community information session will also be held to answer questions and for sign-up. This project is funded by Health Canada Weyt-kp xexwéytep! Cara Basil ren skwekwst. Hello everyone! My name is Cara Basil. My grandparents were Tom and Irene Basil (Dick) and my mom is Elaine Basil. I AM SEEKING COMMUNITY MEMBERS TO PARTICIPATE IN MY RESEARCH PROJECT. IMPORTANT NOTE: ALL PARTICIPANTS MUST BE VACCINATED AND PROVIDE PROOF OF VACCINATION VIA BC VACCINATION PASSPORT 127 Appendix D: Research Agreement 128 129 130 131
Thesis/Dissertation
eng
Interdisciplinary Studies
Vancouver : University of British Columbia Library
Attribution-NonCommercial-NoDerivatives 4.0 International
Graduate
Pesut, Barbara
Johnson, Doreen M.
“I wouldn’t want to be anywhere other than Esk̓ét” : exploring Esk̓étemc ways of caring for one another & the Nav-CARE intervention
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