Understanding communication and engagement needs of researchers, community advocates, practitioners, and people living with HIV regarding brain health: a qualitative community-based needs assessment

Abstract Despite clinical advances, people living with HIV (PLWH) still develop complications due to HIV or the neurotoxicity of treatment regimens, including HIV-associated neurocognitive disorders (neuroHIV). However, many PLWH do not know about neuroHIV and few researchers have an understanding of the psychosocial effects of living with HIV or interact with PLWH or advocates providing services. The primary goal of this study was to understand how to enhance community engagement in neuroHIV research translation to ultimately build bidirectional communication channels among PLWH, researchers, and community advocates. To begin to understand the important gaps in building this engagement, a formative needs assessment was conducted in Philadelphia, PA, as part of the Community Partnership Core in the Comprehensive NeuroHIV Center. In-depth interviews were conducted with HIV researchers ( N = 12), PLWH ( N = 13), and community advocates and practitioners (CAPs) ( N = 14). All groups were asked a core set of questions and then group-specific questions were also used. Thematic categories were identified and coded using an iterative process. Three themes emerged: (1) Differential neuroHIV knowledge and interpretive frameworks; (2) Relational and structural disconnects in engagement; and, (3) Stakeholder-specific pathways for dissemination and partnership. All groups highlighted the importance of addressing gaps in communication, fostering meaningful collaborations, and improving the translation of research findings into actionable insights for diverse audiences, including PLWH. However, few PLWH or CAPs were aware of neuroHIV and its potential effects and most researchers were reluctant or felt they did not have the skills to communicate research findings to groups outside of academic or professional settings. Thus, understanding how to create bidirectional communication pathways to connect researchers with PLWH, as well as advocates and service providers, is crucial to ensuring that future research adequately reflects the unique needs of PLWH.