Social Sciences Oral Abstract Session #3
Tracks
Track 4
Saturday, April 27, 2024 |
15:00 - 17:00 |
Salon B&B1 |
Overview
Sciences sociales séances de présentation orale d’abrégés #3
Speaker
Aki Gormezano
Postdoctoral Research Fellow
University Of Victoria
Insights and Reflections from a Mixed Methods Study of Group Sex Using Community-Based Approaches to Conduct Inclusive HIV/AIDS Research
Abstract
Conducting HIV/AIDS research often involves collecting data from communities who are minoritized based on their sexuality. Especially for researchers who are not of the community that they are studying, planning and implementing such research can be challenging. For example, it can be difficult to develop recruitment messaging and materials that resonate with participants; to use language/terminology that is current, appropriate, and inclusive; and to identify research objectives and questions that will be interesting and beneficial to the community. One way to address these types of challenges is to conduct community-based sexual health research. This involves building authentic community relationships and conducting research in partnership with that affected community by sharing power in decision making. But, how does a research team begin this process when studying a phenomena like group sex that is not bounded by a clear discrete singular community network, and how does this reality shape the trajectory of a community-based research project? In this methodology-focused presentation, we will share insights and reflections from our team’s experience conducting a community-based mixed methods study of group sex in Canada. We established a longitudinal Community Advisory Board of 7 members, conducted longitudinal qualitative interviews annually with 20 participants, and a national trilingual online survey of 500 group sex practitioners. We share and reflect on our process for developing a community advisory board of diverse group sex practitioners, and how we worked together to develop our study protocol and solicited their guidance, feedback, and approval throughout the research process. Community advisory board members provided written informed consent, and we recorded meetings, transcribed them verbatim, and analyzed them thematically. Our overall objective in this presentation will be to give a grounded example of conducting community-based sexual health research and to provide practical insights for researchers interested in employing this methodology in future work.
Jill Koebel
Research Coordinator
Women's College Research Institute
A Case Study on Trauma and Violence-Aware Care (TVAC) as a Research Framework
Abstract
Introduction: Women with HIV in Canada report a high prevalence of trauma and violence, emphasizing the need for trauma-healing programming. In response, the TVAC study recruited women with HIV in British Columbia and Ontario to complete community research associate (CRA) administered surveys to determine the most suitable form of TVAC actions and/or programs for women with HIV. Acknowledging the pervasive experiences of trauma and violence among CRAs and participants, our research methodology incorporated TVAC practices. We present a case study that offers valuable lessons learned from this process.
Methods: The objective of the TVAC study was to generate meaningful insights to inform healing programming while prioritizing the well-being of both participants and CRAs. To achieve this, we planned comprehensive CRA training with a focus on trauma education and interview approaches, fostering an empowering environment for diverse participants. We established support channels for CRAs and curated a resource list for participants. CRAs led recruitment and survey administration to minimize power dynamics and prevent participant re-traumatization.
Results: Although our plans laid a strong foundation, the complexity of a TVAC research methodology demanded reflection and flexibility. The COVID-19 pandemic necessitated adjustments to timelines and the inclusion of pandemic-related questions. Feedback from CRAs during interviews led to adaptations, such as additional CRA training on participant substance use, and enhanced, more frequent check-ins with an emphasis on CRA self-care. Strengthened collaboration with community-based organizations in participants' communities ensured robust participant follow-up support after challenging interviews. Overall, both CRAs and participants praised the study's design and process as validating, supportive, and necessary.
Conclusion: This case study provides insights into creating and conducting research that prioritizes the well-being of participants and CRAs. The lessons learned underscore the importance of reflection, flexibility, and time and resource investment to promote participant and CRA well-being while yielding meaningful findings.
Methods: The objective of the TVAC study was to generate meaningful insights to inform healing programming while prioritizing the well-being of both participants and CRAs. To achieve this, we planned comprehensive CRA training with a focus on trauma education and interview approaches, fostering an empowering environment for diverse participants. We established support channels for CRAs and curated a resource list for participants. CRAs led recruitment and survey administration to minimize power dynamics and prevent participant re-traumatization.
Results: Although our plans laid a strong foundation, the complexity of a TVAC research methodology demanded reflection and flexibility. The COVID-19 pandemic necessitated adjustments to timelines and the inclusion of pandemic-related questions. Feedback from CRAs during interviews led to adaptations, such as additional CRA training on participant substance use, and enhanced, more frequent check-ins with an emphasis on CRA self-care. Strengthened collaboration with community-based organizations in participants' communities ensured robust participant follow-up support after challenging interviews. Overall, both CRAs and participants praised the study's design and process as validating, supportive, and necessary.
Conclusion: This case study provides insights into creating and conducting research that prioritizes the well-being of participants and CRAs. The lessons learned underscore the importance of reflection, flexibility, and time and resource investment to promote participant and CRA well-being while yielding meaningful findings.
Ann Favel
Research Team Member
University of Manitoba
Co-Developing Research Data Gathering Ethics through Ceremony: The 9Genders as Traditionalist Worldview of Indigenous Genders Developmental Study
Abstract
Background: The 9Genders Developmental Study treats research as Ceremony. It centers Indigenous protocols, community priorities, and reciprocal obligations in the research relationship as its core ethical framework. Utilizing decolonizing methodologies to collect data, a primary aim of this land-based study is to promote well-being through land connection and cultural identity while wholistically exploring one’s body-and-spiritual gender identities.
Methodology: A Research as Ceremony team gathering with seven members was held over seven days on the n Elsipogtog First Nation, a Mi’kmaqi community, in May 2023. Team members co-developed ethical data gathering processes within ceremony guided by three considerations: Local Indigenous Elders and Knowledge Keepers, Ceremonial Protocols, and Traditional Ethics. The gathering began in ceremony with the first of four Sweats and a Sacred Fire, the Drum was set up on day two, and a Feast on day seven. Sitting in a Sacred Circle was used as a method to collect data.
Findings: Four emergent themes surfaced: 1) By researching in a good way, trust and comfort was established through ceremony which facilitated holistic, deep sharing; 2) Participants appreciated that the study honoured their rights to self-determination, ongoing consent, and flexibility of participants where they could share or abstain according to their individual comfort levels; 3) The research team noted the importance of relational ethics to listen and connect with the lands of various research sites to determine which ceremonial activities would be most appropriate; 4) the deciding of appropriate dissemination will involve deliberation with knowledge holders to determine permissions, restrictions and benefits back to the community.
Conclusion; The centering of Indigenous worldviews in land-based research offers respectful oversight, self-determination and flexibility towards research participants. Ongoing consent serves as safeguards from forced research participation or sharing of knowledge, thus upholding meaningful ethical research relationships and obligations to collective community priorities.
Methodology: A Research as Ceremony team gathering with seven members was held over seven days on the n Elsipogtog First Nation, a Mi’kmaqi community, in May 2023. Team members co-developed ethical data gathering processes within ceremony guided by three considerations: Local Indigenous Elders and Knowledge Keepers, Ceremonial Protocols, and Traditional Ethics. The gathering began in ceremony with the first of four Sweats and a Sacred Fire, the Drum was set up on day two, and a Feast on day seven. Sitting in a Sacred Circle was used as a method to collect data.
Findings: Four emergent themes surfaced: 1) By researching in a good way, trust and comfort was established through ceremony which facilitated holistic, deep sharing; 2) Participants appreciated that the study honoured their rights to self-determination, ongoing consent, and flexibility of participants where they could share or abstain according to their individual comfort levels; 3) The research team noted the importance of relational ethics to listen and connect with the lands of various research sites to determine which ceremonial activities would be most appropriate; 4) the deciding of appropriate dissemination will involve deliberation with knowledge holders to determine permissions, restrictions and benefits back to the community.
Conclusion; The centering of Indigenous worldviews in land-based research offers respectful oversight, self-determination and flexibility towards research participants. Ongoing consent serves as safeguards from forced research participation or sharing of knowledge, thus upholding meaningful ethical research relationships and obligations to collective community priorities.
Ben Klassen
Associate Director Of Research
Community-Based Research Centre
HIV In Our Day: Assessing the Impact of Mobilizing Research Through Artistic Practice
Abstract
Background: Arts-based storytelling and oral history are important methods to collect nuanced individual stories of the early years of HIV/AIDS, explore disparities between different social groups, and mobilize learnings about HIV across different generations and communities to improve our contemporary responses to the ongoing pandemic. “HIV in My Day” has collected the stories of over 100 long-term survivors and caregivers in British Columbia and sought to mobilize key findings through arts-based methods.
Methods: We assessed the impacts, successes, and challenges of arts-based knowledge mobilization (KM) through In My Day, a verbatim theatre production based on collected oral histories, and an associated intergenerational community gathering held in December 2022. We conducted semi-structured qualitative interviews with members of the creative team (e.g. actors/actresses, director, playwright) and people involved in planning the gathering. Interviews were conducted in-person or online, audio-recorded, transcribed verbatim, and thematically analyzed.
Results: We interviewed 17 participants, including 8 members of the creative team and 9 people involved in planning the community gathering. Participants shared multiple positive impacts of arts-based KM, including improved sense of community and belonging, increased awareness about local impacts of HIV/AIDS, expanded intergenerational connections and networks, and increased dissemination of critical HIV/AIDS histories to broad audiences. Participants also highlighted the importance of meaningful collaboration, appropriate financial resources, and time to optimize arts-based impacts.
Conclusions: Our project identifies strengths and challenges of arts-based KM and key learnings for HIV researchers who wish to effectively engage arts-based methods. Arts-based KM should centre communities directly impacted by HIV and has the potential for far-reaching impact in HIV research. Specifically, the study highlights theatre's role in increasing knowledge about the historic and ongoing HIV/AIDS pandemic in Canada across generations and diverse communities impacted by HIV/AIDS.
Methods: We assessed the impacts, successes, and challenges of arts-based knowledge mobilization (KM) through In My Day, a verbatim theatre production based on collected oral histories, and an associated intergenerational community gathering held in December 2022. We conducted semi-structured qualitative interviews with members of the creative team (e.g. actors/actresses, director, playwright) and people involved in planning the gathering. Interviews were conducted in-person or online, audio-recorded, transcribed verbatim, and thematically analyzed.
Results: We interviewed 17 participants, including 8 members of the creative team and 9 people involved in planning the community gathering. Participants shared multiple positive impacts of arts-based KM, including improved sense of community and belonging, increased awareness about local impacts of HIV/AIDS, expanded intergenerational connections and networks, and increased dissemination of critical HIV/AIDS histories to broad audiences. Participants also highlighted the importance of meaningful collaboration, appropriate financial resources, and time to optimize arts-based impacts.
Conclusions: Our project identifies strengths and challenges of arts-based KM and key learnings for HIV researchers who wish to effectively engage arts-based methods. Arts-based KM should centre communities directly impacted by HIV and has the potential for far-reaching impact in HIV research. Specifically, the study highlights theatre's role in increasing knowledge about the historic and ongoing HIV/AIDS pandemic in Canada across generations and diverse communities impacted by HIV/AIDS.
Dessie Jo Sutherland
Peer Support Worker/advocate/consultant
Wellness Wheel
nika wîci-pimohtêyimitinân (we will walk with you): Training and Integrating Culturally Appropriate Peer Support Networks into Healthcare Systems
Abstract
Background
Peer support is an established evidence-based method to support people to access treatment and care for HIV and other chronic conditions. Although underutilized, incorporating culturally appropriate peer support within standard care delivery can help improve health for people living with HIV (PLWH) and inform decisions for the coordination and management of HIV care.
Methods
The Wellness Wheel offered a ‘Basic Training’ peer support certification program for HIV peer support trainees in 2022. The program consisted of a two-day in-person module training, and several land-based and cultural experiential learning opportunities. The modules were adopted from an established peer training program developed by a Saskatchewan-based psychologist. In a train-the trainer model, modules were revised and culturally enhanced. Experiential learning was facilitated by cultural leaders and knowledge keepers. Sharing circles facilitated knowledge sharing and relationship building. Participant feedback and findings will inform future trainings and strengthen the cultural appropriateness of peer support trainings and ensure readiness of peer workers within community and acute care settings.
Results
14 participants completed Basic Training. Five peers were hired by agencies for peer support work following certification. The full-day training schedule was found to be too short to fully explore the models and facilitate skill development. Hosting an immersive retreat style training added logistical challenges and costs, such as transport, food, accommodation, environmental temptations/triggers, recreational activities, and childcare concerns. Land-based experiential learnings were all well attended and highly regarded by participants.
Lessons Learned/Recommendations
This oral presentation will outline the training program, outcomes, lessons learned and recommendations for HIV peer support trainings, and integration into the health care system. Key recommendations include flexible training schedules with frequent breaks, dedicated skill development and practice, emphasis on confidentiality and communication, critical need for dedicated support for the peer workers, and an established referral system to access peer support services.
Peer support is an established evidence-based method to support people to access treatment and care for HIV and other chronic conditions. Although underutilized, incorporating culturally appropriate peer support within standard care delivery can help improve health for people living with HIV (PLWH) and inform decisions for the coordination and management of HIV care.
Methods
The Wellness Wheel offered a ‘Basic Training’ peer support certification program for HIV peer support trainees in 2022. The program consisted of a two-day in-person module training, and several land-based and cultural experiential learning opportunities. The modules were adopted from an established peer training program developed by a Saskatchewan-based psychologist. In a train-the trainer model, modules were revised and culturally enhanced. Experiential learning was facilitated by cultural leaders and knowledge keepers. Sharing circles facilitated knowledge sharing and relationship building. Participant feedback and findings will inform future trainings and strengthen the cultural appropriateness of peer support trainings and ensure readiness of peer workers within community and acute care settings.
Results
14 participants completed Basic Training. Five peers were hired by agencies for peer support work following certification. The full-day training schedule was found to be too short to fully explore the models and facilitate skill development. Hosting an immersive retreat style training added logistical challenges and costs, such as transport, food, accommodation, environmental temptations/triggers, recreational activities, and childcare concerns. Land-based experiential learnings were all well attended and highly regarded by participants.
Lessons Learned/Recommendations
This oral presentation will outline the training program, outcomes, lessons learned and recommendations for HIV peer support trainings, and integration into the health care system. Key recommendations include flexible training schedules with frequent breaks, dedicated skill development and practice, emphasis on confidentiality and communication, critical need for dedicated support for the peer workers, and an established referral system to access peer support services.
Claudette Cardinal
Indigenous Community Researcher
Feast Centre for Indigenous STBBI Research
The Stat’s Talk Back: Building Capacity with Indigenous Peoples Living with HIV/AIDS in Research Through a Community at the HeART Framework
Abstract
Background: Stat's Talk Back 2.0 aimed to humanize the experiences of individuals living with HIV/AIDS through art and self-reflection. The project's primary objective was to create artworks that reflect the personal stories of those living with HIV/AIDS and move beyond numerical representations.
Methods: A 'Community at the HeART’ framework' prioritized community-led research with problem identification, result interpretation, and knowledge dissemination. For example, a self-assessment of medication effects utilized the Medicine Wheel's quadrants to assess the impact of medications on physical, mental, emotional, and spiritual aspects to maintain a sense of balance. Participants received canvas art materials depicting HIV medication-related side effects and positive action stories, sweetgrass, cedar, sage, tea, and toolkit documents to guide self-assessments. Following the project, a video will be a further educational guide to help educate the researchers, students, medical professionals, and trainees to ensure that they consider the perspectives of the communities they serve and start asking questions and listening with an open mind and heart.
Results: Alongside 23 participants, 19 of whom identified as women and four as men, the project extended beyond academic boundaries to reach care providers and was able to build capacity among researchers who, themselves, are People Living with HIV/AIDS. Lessons learned included flexibility, reflexivity, and creating safety through trauma-informed, strengths-based approaches to evaluate, envision, engage, and enlighten.
Conclusion: By providing a platform for individuals to become 'Wisdom Speakers,’ participants were empowered to share their stories within a safe and supportive environment. Together, they brought community healing, mutual understanding, empathy, and connection. Discussing lived experiences and educating others is paramount, particularly concerning the side effects of medications and the role that gender plays.
Methods: A 'Community at the HeART’ framework' prioritized community-led research with problem identification, result interpretation, and knowledge dissemination. For example, a self-assessment of medication effects utilized the Medicine Wheel's quadrants to assess the impact of medications on physical, mental, emotional, and spiritual aspects to maintain a sense of balance. Participants received canvas art materials depicting HIV medication-related side effects and positive action stories, sweetgrass, cedar, sage, tea, and toolkit documents to guide self-assessments. Following the project, a video will be a further educational guide to help educate the researchers, students, medical professionals, and trainees to ensure that they consider the perspectives of the communities they serve and start asking questions and listening with an open mind and heart.
Results: Alongside 23 participants, 19 of whom identified as women and four as men, the project extended beyond academic boundaries to reach care providers and was able to build capacity among researchers who, themselves, are People Living with HIV/AIDS. Lessons learned included flexibility, reflexivity, and creating safety through trauma-informed, strengths-based approaches to evaluate, envision, engage, and enlighten.
Conclusion: By providing a platform for individuals to become 'Wisdom Speakers,’ participants were empowered to share their stories within a safe and supportive environment. Together, they brought community healing, mutual understanding, empathy, and connection. Discussing lived experiences and educating others is paramount, particularly concerning the side effects of medications and the role that gender plays.
Melissa Egan
National Lead, Episodic Disabilities
Realize
Co-Creation as a Path Toward Inclusion: How Guiding Circles Improve Our Work to Bridge the HIV, Aging, Disability and d/Deaf Communities
Abstract
Background: Grounded in and centered on the core principles of the Greater Involvement of People Living with HIV/AIDS (GIPA) and the Meaningful Engagement of People Living with HIV/AIDS (MEPA), as well as “Nothing For Us, Without Us”, the National Guiding Circle on HIV and Disability (NGC) and the National Coordinating Committee on HIV and Aging (NCC) serve as Pan-Canadian co-creation mechanisms, providing expert leadership, guidance and advice on Realize’s awareness-, capacity,- and relationship-building activities across the HIV, aging, disability and d/Deaf communities.
Methods: The NGC is convened by three Co-Chairs, two of whom live with disability. The NCC is guided by a 12-member Steering Committee. Members of both groups are individuals with living experience, as well as representatives from aging/disability/civil society/human rights and HIV/STBBI organizations in Canada. These volunteer networks provide leadership and strategic advice in the co-creation of policy, research, and programmatic responses. Co-creation balances the responsibilities, benefits, and interests of stakeholders and focuses on the strengths and needs of those with lived experience. This transparent and inclusive approach builds trust in the work.
Outcomes: Guided by these circles, Realize enables policymakers, health professionals, and front-line organizations to uphold human rights commitments to people living and aging with HIV and other disabilities. Examples of co-created works include the NCC’s tools to support organizational change in long-term care to foster inclusion for people aging with HIV; and The Pan-Canadian Research Agenda on HIV, Aging & Older Adulthood; and the NGC’s assessment of the availability and accessibility of HIV testing, treatment, and care services for people living with disabilities which highlighted gaps in service delivery that limit access to STBBI resources by disabled people.
Learnings: Meaningful, on-going consultation with HIV, aging, and disability communities using a co-creation model rather than an ‘advisory committee’ builds authentic relationships and strengthens impact.
Methods: The NGC is convened by three Co-Chairs, two of whom live with disability. The NCC is guided by a 12-member Steering Committee. Members of both groups are individuals with living experience, as well as representatives from aging/disability/civil society/human rights and HIV/STBBI organizations in Canada. These volunteer networks provide leadership and strategic advice in the co-creation of policy, research, and programmatic responses. Co-creation balances the responsibilities, benefits, and interests of stakeholders and focuses on the strengths and needs of those with lived experience. This transparent and inclusive approach builds trust in the work.
Outcomes: Guided by these circles, Realize enables policymakers, health professionals, and front-line organizations to uphold human rights commitments to people living and aging with HIV and other disabilities. Examples of co-created works include the NCC’s tools to support organizational change in long-term care to foster inclusion for people aging with HIV; and The Pan-Canadian Research Agenda on HIV, Aging & Older Adulthood; and the NGC’s assessment of the availability and accessibility of HIV testing, treatment, and care services for people living with disabilities which highlighted gaps in service delivery that limit access to STBBI resources by disabled people.
Learnings: Meaningful, on-going consultation with HIV, aging, and disability communities using a co-creation model rather than an ‘advisory committee’ builds authentic relationships and strengthens impact.
Naomi Maldonado-Rodriguez
Doctoral Student
University Of British Columbia
The Positively Dance Pilot Program: Examining the Feasibility of a Community-Based Peer Research Associate-Led Dance Program for Women Living With HIV
Abstract
Women living with HIV (WLWH) are at greater risk of concurrent conditions and early mortality than men living with HIV or women in the general population. WLWH face social and economic disadvantages that serve as barriers to accessing physical activity programming. Consultations with WLWH affiliated with the Canadian HIV Sexual and Reproductive Health Cohort Study (CHIWOS) identified the need for implementation science research to promote well-being and social connectedness and identified dance as an activity to support both goals, if made free and accessible. Therefore, the purpose of this study was to pilot feasibility of a community-based, peer-led dance program developed with, by, and for women living with HIV.
From June 2022-2023, dance classes were taught twice weekly by peer dance instructors. Feasibility and acceptability were assessed via qualitative interviews with class participants. In keeping with the iterative nature of community-based research, our team also sought to be responsive to the informal feedback provided by participants and community partners and documented adjustments made throughout.
In total, 17 WLWH enrolled in the dance program. Eight participants (53%) attended classes more than once, and three (18%) participants attended between 15 and 20 classes. Dance classes were well-received and elicited feelings of joy and accomplishment for participants. Common participation barriers included life events or employment conflicting with the dance schedule, injuries, and the requirement to complete a blood draw to participate in the study. To maximize accessibility and support participation, our research team made adjustments throughout the study, including removing the blood draw requirement, supporting self-enrolment in the dance program, and embedding the dance program within a community organization. Our study shows that ongoing efforts are required to encourage participation in community physical activity programming and that collaborative approaches, such as community-based research, can support the feasibility and sustainability of future dance programs.
From June 2022-2023, dance classes were taught twice weekly by peer dance instructors. Feasibility and acceptability were assessed via qualitative interviews with class participants. In keeping with the iterative nature of community-based research, our team also sought to be responsive to the informal feedback provided by participants and community partners and documented adjustments made throughout.
In total, 17 WLWH enrolled in the dance program. Eight participants (53%) attended classes more than once, and three (18%) participants attended between 15 and 20 classes. Dance classes were well-received and elicited feelings of joy and accomplishment for participants. Common participation barriers included life events or employment conflicting with the dance schedule, injuries, and the requirement to complete a blood draw to participate in the study. To maximize accessibility and support participation, our research team made adjustments throughout the study, including removing the blood draw requirement, supporting self-enrolment in the dance program, and embedding the dance program within a community organization. Our study shows that ongoing efforts are required to encourage participation in community physical activity programming and that collaborative approaches, such as community-based research, can support the feasibility and sustainability of future dance programs.