Grant: Operating Grant - HIV/AIDS CBR Program - General

We know that about 50% of people living with HIV/AIDS (PHAs) will acquire some neurocognitive impairments during their lifetime. We also know that people living and aging with HIV are worried about their cognitive functioning, including dementia. Yet, limited clinical resources exist for those who have cognitive concerns or who have been diagnosed with HIV Associated Neurocognitive Disorder (HAND). The original HEADS UP! CBR catalyst study highlighted the need to better understand the experience of diverse PHAs who have cognitive concerns and HAND, how PHAs navigate their service experiences, as well as experiences of service providers in different settings, in order to develop tools to support diverse PHAs, caregivers, and providers to address the health-related challenges of cognitive issues and HAND. Our goals in the HEADS UP! 2 study are to use CBR methods to examine the experiences of up to 60 persons living with HIV concerned with cognitive functioning and their caregivers in 3 sites (ON, AB, BC), as well as the perspectives and experiences of 16 clinical and community-based service providers on delivering care to PHAs (in ON, AB, BC, QB) with neurocognitive issues. We seek full engagement and capacity-building for all team members, including a group of peer research associates (PRAs) who will contribute to the team through study design, data analysis, and knowledge transfer and exchange. Ultimately, our aim is to collaboratively develop tools to support PHAs to seek care for cognitive concerns, assist them with (brain) health promoting strategies, improve awareness among health care professionals about HIV neurocognitive issues and HAND, and improve neurocognitive services for PHAs, Our team includes PHAs, clinicians and researchers from the HEADS UP! 1 study, and new partners, including those from ACB and Indigenous communities, as well as international partners, all of whom recognize the importance of this issue for people living and aging with HIV.