Social Sciences Oral Abstract Session #2
Thursday, May 6, 2021 |
2:30 PM - 4:00 PM |
Overview
Sciences sociales séances de présentation orale d’abrégés #2
Speaker
Aaron Li
Research Assistant
Feast Centre For Stbbi Research
A Review of the use of Participatory Methodologies in Indigenous STBBI Research: Towards Learning from Others and Improving Research Practices
Abstract
Aim/Objective: The current political and social realities of Indigenous life in Canada requires thoughtful and respectful approaches to health research that inspire positive transformational change. To achieve this, health research in participatory methodologies that meaningfully involve Indigenous peoples in health research is needed. The goal of this rapid review was to examine wise practices in participatory methodologies as an approach to STBBI Indigenous research across four pillars of health (basic, clinical, epidemiological, and social sciences).
Methods: This review adopted a rapid review protocol to gather relevant literature. Articles were identified in various databases. Those included in the final analysis contained an exclusive focus on Indigenous peoples, used a participatory methodology, and contained a comprehensive theoretical section. Data from the articles were charted and coded based on criterion provided from the Critical Appraisal Skills Programme [CASP] qualitative checklist. The sections were then collaboratively analyzed to identity emerging themes.
Findings: This review included 37 articles in the final analysis which were coded to identify common themes. Central themes included participatory methodologies (i.e., patient oriented, community-based, community-based participatory, and action research), Indigenous partnership and participation, use of Indigenous language, ceremony in research, and knowledge translation.
Implications/Discussion: Supported by the Feast Centre for Indigenous STBBI research, we are especially interested in how specific tenets of participatory methodology-based research are operationalized and how participatory methodologies change within a decolonizing and Indigenous perspective across each of the four pillars of health research. Given the diverse populations of Indigenous peoples living in Canada, no standardized framework can be provided. However, common practices and translations of Indigenous worldviews in participatory methodologies have been compiled. The findings of this research will be used, but not limited to, develop training sessions, webinars, and toolkits to support various projects funded by the Feast Centre.
Methods: This review adopted a rapid review protocol to gather relevant literature. Articles were identified in various databases. Those included in the final analysis contained an exclusive focus on Indigenous peoples, used a participatory methodology, and contained a comprehensive theoretical section. Data from the articles were charted and coded based on criterion provided from the Critical Appraisal Skills Programme [CASP] qualitative checklist. The sections were then collaboratively analyzed to identity emerging themes.
Findings: This review included 37 articles in the final analysis which were coded to identify common themes. Central themes included participatory methodologies (i.e., patient oriented, community-based, community-based participatory, and action research), Indigenous partnership and participation, use of Indigenous language, ceremony in research, and knowledge translation.
Implications/Discussion: Supported by the Feast Centre for Indigenous STBBI research, we are especially interested in how specific tenets of participatory methodology-based research are operationalized and how participatory methodologies change within a decolonizing and Indigenous perspective across each of the four pillars of health research. Given the diverse populations of Indigenous peoples living in Canada, no standardized framework can be provided. However, common practices and translations of Indigenous worldviews in participatory methodologies have been compiled. The findings of this research will be used, but not limited to, develop training sessions, webinars, and toolkits to support various projects funded by the Feast Centre.
Dr David Lessard
Research Assistant
Mcgill University Health Centre
“You Should Have Approached Me Before I Wrote my Will”: Older People with HIV’s Willingness to Participate in End-of-Life Cure Research in Canada
Abstract
Background: HIV cure research requires biopsies of deep tissues. Unfeasible in living participants, these biopsies are obtained post-mortem. End-of-life and post-mortem research, and biobanking, raise ethically sensitive and personal questions. We examined older people with HIV (PWH)’ willingness concerning participation in HIV cure research
Methods: Designed with the Last Gift Study (UC-San Diego) and the CanCURE community advisory board, this mixed-method research with PWH aged ≥65 years (N=50) in Montreal, Toronto, and Ottawa involves a survey (multiple choices; 4-point Likert scales) and in-depth interviews for a subset of 16 participants. We describe quantitative results and thematically-coded qualitative results to identify facilitators and barriers.
Results: As of December 2020, 20 participants completed the survey, and 6 completed interviews. Most are cis men (n=19), White (n=18), and born in Canada (n=16). Mean age was 71 years old, with mean duration of living with HIV of 28 years. Three participants reported a terminal illness, i.e., cancer (n=2/20) and cardiovascular disease (n=1/20). Most expressed interest in participating in HIV cure research (17/20), donating tissues to an HIV biobank (16/20), and participating in a research autopsy (n=15/20). Forms of compensation considered as fair by greatest numbers of participants included access to research results generated while living (11/20) and covering cremation/burial costs (6/20). Qualitatively, facilitators included being approached by a trusting healthcare provider, feeling one contributes to science, altruistic/moral motives, and the idea of turning HIV into something positive. Barriers included having already written their will, weariness, concerns about family members (disclosure, disagreement), and needing more time or information.
Conclusion: Preliminary results indicate that approaching PWH for cure research and biobanking should be a continuous, accountable, and empowering process initiated early, before one has taken written their will. Including participants of greater gender and ethnic diversity could lead to more generalizable results and clearer recommendations.
Methods: Designed with the Last Gift Study (UC-San Diego) and the CanCURE community advisory board, this mixed-method research with PWH aged ≥65 years (N=50) in Montreal, Toronto, and Ottawa involves a survey (multiple choices; 4-point Likert scales) and in-depth interviews for a subset of 16 participants. We describe quantitative results and thematically-coded qualitative results to identify facilitators and barriers.
Results: As of December 2020, 20 participants completed the survey, and 6 completed interviews. Most are cis men (n=19), White (n=18), and born in Canada (n=16). Mean age was 71 years old, with mean duration of living with HIV of 28 years. Three participants reported a terminal illness, i.e., cancer (n=2/20) and cardiovascular disease (n=1/20). Most expressed interest in participating in HIV cure research (17/20), donating tissues to an HIV biobank (16/20), and participating in a research autopsy (n=15/20). Forms of compensation considered as fair by greatest numbers of participants included access to research results generated while living (11/20) and covering cremation/burial costs (6/20). Qualitatively, facilitators included being approached by a trusting healthcare provider, feeling one contributes to science, altruistic/moral motives, and the idea of turning HIV into something positive. Barriers included having already written their will, weariness, concerns about family members (disclosure, disagreement), and needing more time or information.
Conclusion: Preliminary results indicate that approaching PWH for cure research and biobanking should be a continuous, accountable, and empowering process initiated early, before one has taken written their will. Including participants of greater gender and ethnic diversity could lead to more generalizable results and clearer recommendations.
Michael Parsons
Gipa Homefire Co Coordinator
Caan
GIPA Homefire: Understanding IPHA Leadership towards a Wholistic Response to STBBI
Abstract
Background:
Involvement of Indigenous People living with HIV/AIDS (IPHAs) is integral in the response to HIV/AIDS within First Nation, Inuit and Métis populations in Canada. The GIPA Homefire project brings together IPHAs, academics, and community researchers to explore how to ‘Indigenize’ the concepts of the Greater Involvement of People living with AIDS (GIPA) and IPHA leadership.
Methodology:
This project applies a mixed method, multi-pronged approach, emphasizing Indigenous ways of knowing, decolonizing research methodologies, Two Eyed Seeing, and principles of Community-Based Research. Questions were informed by a literature review and developed in collaboration with our team. All questions were culturally grounded and inclusive of traditional teachings.
Findings:
Our study included IPHAs who have taken on leadership roles in the HIV movement. We have learned that the majority of survey respondents are single and under half are living alone. The majority of respondents earn less than $20,000 per year. A large number of these respondents participate in traditional ceremonies such as smudging, singing, drumming, sweats, traditional crafts, talking with Elders, pow wows, preparing traditional foods, and learning their language. All interview participants to date have indicated that participating with other IPHAs has had a positive effect on themselves and the Indigenous HIV/AIDS movement. This was frequently attributed to reducing stigma, and a sense of connection and/or understanding with other IPHAs. Reciprocally, mentorship and engagement with others has also had a positive impact on IPHAs. Striking changes in the context of leadership have been noted across the decades of engagement in responding to HIV/AIDS.
Next Steps:
A review of GIPA related policy documents and organizational leader interviews will compliment the individual survey and interview data. These additional reviews will contribute to understanding how organizations enact GIPA principles. This multi-pronged approach will frame our research findings as action oriented recommendations to maximize positive outcomes.
Involvement of Indigenous People living with HIV/AIDS (IPHAs) is integral in the response to HIV/AIDS within First Nation, Inuit and Métis populations in Canada. The GIPA Homefire project brings together IPHAs, academics, and community researchers to explore how to ‘Indigenize’ the concepts of the Greater Involvement of People living with AIDS (GIPA) and IPHA leadership.
Methodology:
This project applies a mixed method, multi-pronged approach, emphasizing Indigenous ways of knowing, decolonizing research methodologies, Two Eyed Seeing, and principles of Community-Based Research. Questions were informed by a literature review and developed in collaboration with our team. All questions were culturally grounded and inclusive of traditional teachings.
Findings:
Our study included IPHAs who have taken on leadership roles in the HIV movement. We have learned that the majority of survey respondents are single and under half are living alone. The majority of respondents earn less than $20,000 per year. A large number of these respondents participate in traditional ceremonies such as smudging, singing, drumming, sweats, traditional crafts, talking with Elders, pow wows, preparing traditional foods, and learning their language. All interview participants to date have indicated that participating with other IPHAs has had a positive effect on themselves and the Indigenous HIV/AIDS movement. This was frequently attributed to reducing stigma, and a sense of connection and/or understanding with other IPHAs. Reciprocally, mentorship and engagement with others has also had a positive impact on IPHAs. Striking changes in the context of leadership have been noted across the decades of engagement in responding to HIV/AIDS.
Next Steps:
A review of GIPA related policy documents and organizational leader interviews will compliment the individual survey and interview data. These additional reviews will contribute to understanding how organizations enact GIPA principles. This multi-pronged approach will frame our research findings as action oriented recommendations to maximize positive outcomes.
Professor Josephine Etowa
Professor
UNIVERSITY OF OTTAWA
Strengthening capacity of healthcare providers to mitigate the impact of COVID-19 on African Caribbean and Black (ACB) communities
Abstract
Background: The COVID-19 pandemic has emerged as an unprecedented challenge for healthcare systems across the world. African, Caribbean and Black communities (ACB) represent vulnerable populations in terms of their health risks, receipt of adequate care and chance of recovery. The increased burden of COVID-19 morbidity and mortality among vulnerable populations translates into greater challenges for healthcare systems through loss of social capital, productive labour force, and erosion of cultural equity.
Purpose: This paper presents preliminary findings of a study that seeks to generate evidence to inform clinical and health system management to mitigate the spread of COVID-19 and related health consequences in racialized communities.
Research Design: This one-year mixed-methods research is guided by socio-ecological model (SEM), intersectionality and community-based participatory research frameworks in Ottawa and Toronto. Healthcare provider (HCP, n= 600) and In-depth individual interviews (IDIs, n=100) on COVID-related knowledge, socioeconomic and health vulnerabilities and health care experiences is being conducted involving ACB people, HCP and policy makers (PM). This paper will focus on the qualitative findings.
Results: Preliminary findings of the qualitative component of the study will be presented. These includes the contextual vulnerability and challenges experienced by ACB communities, healthcare providers’ needs to improve quality of healthcare for ACB communities, and promising strategies to mitigate the impact of COVID-19 on ACB communities. Data analysis is in progress.
Discussion and Implications: Actions to mitigate health risks and strengthen the capacity of healthcare systems are necessary to tackle the pandemic and improve COVID-19 pandemic response and must be informed by the realities of vulnerable populations. Our study is generating evidence and interventions to strengthen the health system’s capacity and improving critical health literacy among ACB communities.
Keywords: COVID-19; African Caribbean and Black (ACB) communities; Health care providers (HCP); Health system
Purpose: This paper presents preliminary findings of a study that seeks to generate evidence to inform clinical and health system management to mitigate the spread of COVID-19 and related health consequences in racialized communities.
Research Design: This one-year mixed-methods research is guided by socio-ecological model (SEM), intersectionality and community-based participatory research frameworks in Ottawa and Toronto. Healthcare provider (HCP, n= 600) and In-depth individual interviews (IDIs, n=100) on COVID-related knowledge, socioeconomic and health vulnerabilities and health care experiences is being conducted involving ACB people, HCP and policy makers (PM). This paper will focus on the qualitative findings.
Results: Preliminary findings of the qualitative component of the study will be presented. These includes the contextual vulnerability and challenges experienced by ACB communities, healthcare providers’ needs to improve quality of healthcare for ACB communities, and promising strategies to mitigate the impact of COVID-19 on ACB communities. Data analysis is in progress.
Discussion and Implications: Actions to mitigate health risks and strengthen the capacity of healthcare systems are necessary to tackle the pandemic and improve COVID-19 pandemic response and must be informed by the realities of vulnerable populations. Our study is generating evidence and interventions to strengthen the health system’s capacity and improving critical health literacy among ACB communities.
Keywords: COVID-19; African Caribbean and Black (ACB) communities; Health care providers (HCP); Health system
Lisa Boucher
PhD Candidate
University of Ottawa
Experiences of Managing Chronic Health Issues among Socioeconomically Marginalized People who Use Drugs
Abstract
Background: Self-management is recommended for addressing chronic conditions. Despite calls to consider drug use as a chronic condition, chronic disease self-management supports have rarely been applied to people who use drugs (PWUD). Self-management programs improve health behaviours, outcomes and quality of life, yet it is unclear if PWUD can achieve such benefits. Our objective was to explore the chronic disease self-management and support experiences of socioeconomically marginalized PWUD.
Methods: Using community-based participatory methods with meaningful engagement of five people with lived experience, we developed a qualitative interview guide appropriate for the intended population. Participants self-identified as having long-term experience using drugs illicitly, drug use within the past year, at least one other chronic condition, and current socioeconomic marginalization. We used maximum variation sampling and a peer-led, intersectionality-informed recruitment approach. Data were analyzed using reflexive thematic analysis.
Results: We interviewed 15 participants with diverse characteristics. PWUD reported multimorbidity, especially mental health issues, chronic pain and infectious diseases, along with acute health issues. Although many considered their drug use a chronic health issue, self-medicating with non-prescribed drugs was also a key self-management strategy for other health issues. Participants described numerous other strategies to manage their health issues, such as engaging with community supports, creative pursuits and cognitive-behavioural strategies. Furthermore, participants highlighted substantial barriers to managing their health issues, mostly stemming from socioeconomic instability.
Conclusions: Our findings highlight the need for structural interventions to support self-management among marginalized PWUD, most prominently access to stable housing, safe supply of pharmaceutical-grade drugs and improved pain management. Self-management supports for PWUD should include assorted low-barrier community-based options, peer work or mutual support opportunities, and empowerment to advocate for needs including system-level changes. Overall, self-management initiatives should apply a relational autonomy approach to understand marginalized peoples’ experiences, recognizing constraints of social networks, material circumstances, and power relations.
Methods: Using community-based participatory methods with meaningful engagement of five people with lived experience, we developed a qualitative interview guide appropriate for the intended population. Participants self-identified as having long-term experience using drugs illicitly, drug use within the past year, at least one other chronic condition, and current socioeconomic marginalization. We used maximum variation sampling and a peer-led, intersectionality-informed recruitment approach. Data were analyzed using reflexive thematic analysis.
Results: We interviewed 15 participants with diverse characteristics. PWUD reported multimorbidity, especially mental health issues, chronic pain and infectious diseases, along with acute health issues. Although many considered their drug use a chronic health issue, self-medicating with non-prescribed drugs was also a key self-management strategy for other health issues. Participants described numerous other strategies to manage their health issues, such as engaging with community supports, creative pursuits and cognitive-behavioural strategies. Furthermore, participants highlighted substantial barriers to managing their health issues, mostly stemming from socioeconomic instability.
Conclusions: Our findings highlight the need for structural interventions to support self-management among marginalized PWUD, most prominently access to stable housing, safe supply of pharmaceutical-grade drugs and improved pain management. Self-management supports for PWUD should include assorted low-barrier community-based options, peer work or mutual support opportunities, and empowerment to advocate for needs including system-level changes. Overall, self-management initiatives should apply a relational autonomy approach to understand marginalized peoples’ experiences, recognizing constraints of social networks, material circumstances, and power relations.
Ms, Apondi J. Odhiambo
Phd Candidate
University Of Toronto
Law, HIV Care and Un/Detectability: Social Organization of HIV health Care for African, Caribbean and Black Immigrants Living with HIV in Toronto
Abstract
Background
ACB migrants living with HIV face health disparities that increase their burden of living with HIV and impact their effort of access and engagement in HIV care. Despite these gaps, HIV response in Canada currently consists of legal and healthcare policies and practices couched in scientific knowledge of undetectable HIV viral load. This study explored the tensions and disconnections existing between the realities of accessing and engaging in HIV care and how the institutional complex of HIV care is currently organized and determined the health outcome and consequences for ACB migrants living with HIV.
Methods
The study employed Institutional Ethnography as a method of inquiry to conduct 30 in-depth interviews with ACB migrants living with HIV in Toronto and 20 in-depth interviews with health care providers and policy/decision makers involved in the delivering of HIV care in Toronto. Textual analysis of regulations, policies, legislations, and guiding principles connected to HIV care and healthcare in general were also conducted. Mapping of institutional orders s and social relations that organize and coordinate HIV healthcare and treatment was done.
Results:
Several issues emerged as presenting barriers to HIV care and attainment of undetectable viral load and optimal health for ACB migrants living with HIV. Physician fee-for -service and lack of health coverage of uninsured services and prescription drugs such HIV medication and treatment of co-infections impact quality of HIV care. Healthcare providers lack of awareness of health risk factors specific to ACB migrants. Legal practices associated with HIV non-disclosure impacts patient-provider relationship. Immigrant status is a barrier to accessing HIV healthcare.
Conclusion:
Understanding and addressing the multiple and intersecting structural and socio-cultural factors that significantly impact access and engagement in HIV care and social determinants of health will help improve HIV care and health outcome of ACB migrants living with HIV.
ACB migrants living with HIV face health disparities that increase their burden of living with HIV and impact their effort of access and engagement in HIV care. Despite these gaps, HIV response in Canada currently consists of legal and healthcare policies and practices couched in scientific knowledge of undetectable HIV viral load. This study explored the tensions and disconnections existing between the realities of accessing and engaging in HIV care and how the institutional complex of HIV care is currently organized and determined the health outcome and consequences for ACB migrants living with HIV.
Methods
The study employed Institutional Ethnography as a method of inquiry to conduct 30 in-depth interviews with ACB migrants living with HIV in Toronto and 20 in-depth interviews with health care providers and policy/decision makers involved in the delivering of HIV care in Toronto. Textual analysis of regulations, policies, legislations, and guiding principles connected to HIV care and healthcare in general were also conducted. Mapping of institutional orders s and social relations that organize and coordinate HIV healthcare and treatment was done.
Results:
Several issues emerged as presenting barriers to HIV care and attainment of undetectable viral load and optimal health for ACB migrants living with HIV. Physician fee-for -service and lack of health coverage of uninsured services and prescription drugs such HIV medication and treatment of co-infections impact quality of HIV care. Healthcare providers lack of awareness of health risk factors specific to ACB migrants. Legal practices associated with HIV non-disclosure impacts patient-provider relationship. Immigrant status is a barrier to accessing HIV healthcare.
Conclusion:
Understanding and addressing the multiple and intersecting structural and socio-cultural factors that significantly impact access and engagement in HIV care and social determinants of health will help improve HIV care and health outcome of ACB migrants living with HIV.