Indigenous Peoples and genomics: Starting a conversation.

Compared to European ancestral groups, Indigenous Canadians are more likely to have uninterpretable genome-wide sequencing results due to non-representation in reference databases. We began a conversation with Indigenous Canadians to raise awareness and give voice to this issue. We co-created a video explaining genomic non-representation that included diverse Indigenous view-points. We audio-recorded the focus groups including 30 First Nations, Métis, and Inuit individuals living in Greater Vancouver. After watching an introductory video explaining genomic testing, participants discussed issues surrounding collecting Indigenous genomic data, its control, and usage. Transcripts were analyzed, and participants' quotes representing main themes were incorporated into the introductory video. Indigenous participants discussed data interpretation and gave approval for quote usage. The 20 participants who provided feedback concurred with the thematic interpretation: Systemic racism interlaced most conversations, particularly within the theme of trust. Themes of governance emphasized privacy and fear of discrimination. Some participants thought a separate, Indigenous-controlled database was essential; others recognized advantages of international databases. The theme of implementation included creative ideas to collect Indigenous genomes, but prior approval from Indigenous leaders was emphasized. The final video (https://youtu.be/-wivIBDjoi8) was shared with participants to use as they wish to promote awareness and ongoing discussion of genomic diagnostic inequity.

"All my relations": experiences and perceptions of Indigenous patients connecting with Indigenous Elders in an inner city primary care partnership for mental health and well-being.

BACKGROUND: Mental health services in urban settings generally have not been adapted to serve the needs of Indigenous patients. We explored how patients' encounters with Indigenous Elders affected their overall mental health and well-being to identify therapeutic mechanisms underlying improvement. METHODS: We conducted qualitative interviews of participants enrolled in a 6-month prospective mixed-methods evaluation of a program for mental health and well-being that featured the inclusion of Elders in the direct care of Indigenous patients in an inner city primary care clinic. Individual semistructured interviews were conducted to explore patients' experiences and perceptions of their participation in the Elders program. RESULTS: We included 37 participants from at least 20 different First Nations. All but 1 participant described substantial benefits from their encounters with Elders, and none reported being negatively affected. Five overarching themes were identified: experiencing healing after prolonged periods of seeking and desperation; strengthening cultural identity and belonging; developing trust and opening up; coping with losses; and engaging in ceremony and spiritual dimensions of care as a resource for hope. INTERPRETATION: Our evaluation illustrates that the Elders program was perceived by participants to have a broad range of positive impacts on their care and well-being. Although this study was based on experiences at a single urban clinic, these findings support the Truth and Reconciliation Commission of Canada's calls to action regarding the inclusion of Elders as a strategy to improve care of Indigenous patients in Canadian health care systems.

Reclaiming Our Spirits: Development and Pilot Testing of a Health Promotion Intervention for Indigenous Women Who Have Experienced Intimate Partner Violence.

Indigenous women are subjected to high rates of multiple forms of violence, including intimate partner violence (IPV), in the context of ongoing colonization and neo-colonization. Health promotion interventions for women who experience violence have not been tailored specifically for Indigenous women. Reclaiming Our Spirits (ROS) is a health promotion intervention designed for Indigenous women living in an urban context in Canada. In this paper, we describe the development of the intervention, results of a pilot study, and the revised subsequent intervention. Building on a theory-based health promotion intervention (iHEAL) showing promising results in feasibility studies, ROS was developed using a series of related approaches including (a) guidance from Indigenous women with research expertise specific to IPV and Indigenous women's experiences; (b) articulation of an Indigenous lens, including using Cree (one of the largest Indigenous language groups in North America) concepts to identify key aspects; and (c) interviews with Elders (n = 10) living in the study setting. Offered over 6-8 months, ROS consists of a Circle, led by an Indigenous Elder, and 1:1 visits with a Registered Nurse, focused on six areas for health promotion derived from previous research. Pilot testing with Indigenous women (n = 21) produced signs of improvement in most measures of health from pre- to post-intervention. Women found the pilot intervention acceptable and helpful but also offered valuable suggestions for improvement. A revised intervention, with greater structure within the Circle and nurses with stronger knowledge of Indigenous women's experience and community health, is currently undergoing testing. © 2017 Wiley Periodicals, Inc.

Promoting Slhánay̓ Skwálwen (Indigenous Women's Heart Health): Findings From Sharing Circles With Squamish Nation.

OBJECTIVE: To gather knowledge and experiences from Squamish Nation citizens to codevelop a model of foraging walks for Indigenous women's heart health. DESIGN: Qualitative study (sharing circles). SETTING: Vancouver, Canada (virtual). PARTICIPANTS: Squamish Nation community members (n = 9), Elders or Knowledge Keepers (n = 5), and researchers (n = 2). INTERVENTION: Community-led foraging walks as a culturally safe nutrition education strategy. MAIN OUTCOME MEASURE(S): Perspectives and experiences. ANALYSIS: Content analysis and narrative synthesis. RESULTS: Personal experiences of foraging walks or knowledge of traditional plants were limited for most participants, and all desired to learn more about traditional foods using land-based activities. Participants identified a lack of nutrition education surrounding heart health and common mistreatment and judgment from health professionals. Participants identified important elements of a future Squamish program, including who should be involved, how to implement it, and the most effective temporal and physical setting. All agreed foraging walks help promote 5 dimensions of heart health (physical, emotional, spiritual, mental, and social) through physical activity, purposeful nutrition, and connection to community and culture. Findings from the sharing circles were used in the creation of a template for future foraging sessions and contributed to plant identification cards for the whole community. CONCLUSIONS AND IMPLICATIONS: Community-based pilot studies to test foraging walks as a culturally safe and environmental approach to nutrition education and cardiovascular health awareness for Indigenous communities are warranted. Research to examine the similarities and differences across Indigenous groups related to understanding heart health and land-based practices for nutrition education and heart health awareness is needed.

Patients' perspectives on how to improve diabetes care and self-management: qualitative study.

OBJECTIVE: People living with diabetes need and deserve high-quality, individualised care. However, providing such care remains a challenge in many countries, including Canada. Patients' expertise, if acknowledged and adequately translated, could help foster patient-centred care. This study aimed to describe Expert Patients' knowledge, wisdom and advice to others with diabetes and to health professionals to improve diabetes self-management and care. DESIGN AND METHODS: We recruited a convenience sample of 21 men and women. Participants were people of diverse backgrounds who are Patient Partners in a national research network (hereafter Expert Patients). We interviewed and video-recorded their knowledge, wisdom and advice for health professionals and for others with diabetes. Three researchers independently analysed videos using inductive framework analysis, identifying themes through discussion and consensus. Expert Patients were involved in all aspects of study design, conduct, analysis and knowledge translation. RESULTS: Acknowledging and accepting the reality of diabetes, receiving support from family and care teams and not letting diabetes control one's life are essential to live well with diabetes. To improve diabetes care, health professionals should understand and acknowledge the impact of diabetes on patients and their families, and communicate with patients openly, respectfully, with empathy and cultural competency. CONCLUSION: Expert Patients pointed to a number of areas of improvement in diabetes care that may be actionable individually by patients or health professionals, and also collectively through intergroup collaboration. Improving the quality of care in diabetes is crucial for improving health outcomes for people with diabetes.

Building Bridges: Describing a Process for Indigenous Engagement in Epidemiology.

BACKGROUND: Processes for epidemiology embedded with Indigenous methodology are needed. Building Bridges was developed to engage Indigenous peoples in epidemiology to address health issues relevant to them. OBJECTIVES: We describe our process for meaningfully engaging Indigenous leaders and peoples living with human immunodeficiency virus (HIV) in epidemiology research. METHODS: As a community-based research (CBR) project, Indigenous methodologies and leadership ensured the quality and relevance of findings. Study phases included 1) advisory board formation, 2) recruitment, 3) research question identification, 4) data analysis from the Canadian HIV Observational Cohort (CANOC) collaboration, 5) data interpretation and contextualization, and 6) knowledge translation and exchange. LESSONS LEARNED: Support and guidance from Indigenous team members, Spiritual Leaders and Elders along with meaningful relationships with allied academic researchers were pivotal. Expertise and lived experiences in Indigenous culture, HIV, epidemiology and services enabled multidirectional learning. CONCLUSIONS: Building Bridges' success hinged on ongoing co-learning and engagement of Indigenous peoples, service providers and researchers.