While chronic pain is increasingly recognized as a concern among People Living With HIV (PLWH), there are limited opportunities for PLWH to directly shape how this issue is understood, measured, and addressed in research. This is particularly important for aging, Indigenous, and/or PLWH who use drugs, whose experiences of pain may be shaped by stigma, trauma, racism, substance use, and fragmented services. Existing health data (e.g., administrative data) often fail to capture the biopsychosocial nature of chronic pain, creating a need for community-informed approaches that reflect how pain is experienced in daily life and across care settings.
This engagement activity will take place in the Vancouver Coastal Health region and will consist of two half-day, in-person sessions held in a community-accessible and culturally safe venue (e.g., 312 Main St, affiliated with the Community Engagement Research Initiative, Simon Fraser University). The sessions will use facilitated discussions, talking-circles, and interactive priority-setting activities (e.g. body mapping). The first session (4-5 hours) will focus on lived/living experiences of aging with HIV and chronic pain, including how participants describe pain, how pain affects daily life and care engagement, and what obstacles they encounter when seeking support. The second session (4-5 hours) will focus on identifying knowledge gaps, research priorities, and practical opportunities to improve how chronic pain is understood, measured, and addressed among aging PLWH.
Participants will include approximately 10 aging PLWH with lived/living experience of chronic pain, with intentional inclusion of people who are Indigenous and/or use drugs and people who have faced obstacles to care. Claudette Cardinal, an Indigenous Woman Living With HIV will co-lead both sessions to help ground the activity in lived experience and culturally safe, trauma-informed approaches. Researchers will participate primarily as co-facilitators, listeners, and knowledge users.
The anticipated outcomes include identifying community-informed priorities, clarifying knowledge gaps, and generating practical guidance for future chronic pain research among PLWH. Specifically, the immediate outcome is stronger researcherresearch user relationships and a clearer, community-informed pathway for future research and care improvement. Soon, the sessions will inform a future pain-specific survey that may later be linked with administrative health data.
Additional team members and participating organizations:
Dr. Robert Hogg, Dr. Kathleen Inglis, and Dr. Surita Parashar