Heading Out! Co-creating KTE with peer researchers from the HEADS UP! and HEADSUP!2 studies

Approximately 50% of people aging with HIV/AIDS will develop neurocognitive impairments and/or HIV-associated Neurocognitive Disorder (HAND) over the course of their life and many people living with HIV/AIDS are concerned about their cognitive functioning. However, little known about the day-to-day or health service seeking experiences of those living with HIV and cognitive concerns. Additionally, there are few resources available for those living with cognitive concerns and HIV/AIDS, service providers who support clients living with HIV, or family/friends/informal caregivers of those living with HIV. Our original CIHR-funded HEADS UP! community-based research (CBR) catalyst study highlighted the need to better understand the experience of diverse PHAs who have cognitive concerns and/or HAND, how PHAs navigate their service experiences, as well as experiences of service providers in different settings. The HEADSUP!2 study used CBR methods to examine the experiences of people living with HIV who were also concerned about their neurocognitive health, along with their caregivers, as well as the perspectives and experiences of clinical and community-based service provider in 4 sites (Vancouver, Calgary, Toronto, and Montreal). Following a CBR approach and prioritizing the meaningful engagement of people living with HIV, our study team included a diverse group of peer research associates (PRA) with lived experience of HIV and cognitive concerns throughout the study process. Our peer team (n=8) includes people who are underrepresented in research including newcomers to Canada, visible minorities, Indigenous people, people who identify as LGBTQ2S, people who identify as transgender. This dissemination grant will support the continued engagement of the PRA team to co-create and disseminate new knowledge translation outputs based on the HEADSUP!2 study findings to our diverse stakeholder/knowledge user groups.