Nothing about Us without Us Is for Us: A Participatory Action Research Project Examining the Current Status and Future Vision of the Meaningful Involvement of People Living with HIV (MIPHA) in HIV Services

Background. For over 30 years, people living with HIV have been successfully organizing to demand recognition, policy action, meaningful access to decision making, and ownership over knowledge production related to their lived experience, a process often referred to as "the Meaningful Involvement of People Living with HIV/AIDS (MIPHA).” Despite ongoing community calls for MIPHA accountability in HIV service organizations, little is known about the extent to which MIPHA is integrated into current service systems, nor has there been research examining barriers and facilitators to contemporary MIPHA implementation. This qualitative participatory action research study aims to better understand MIPHA implementation from the perspective of HIV activists and advocates committed to expanding MIPHA efforts at the systems and service levels. The project is co-led by academic researcher-activists and community based activist-researchers, who are people living with HIV.

Methods. The research team collected in-depth individual interviews (n=19) with people living with HIV who have held MIPHA-oriented roles (e.g. community advisory board membership) and HIV service organization leaders engaged in MIPHA (groups were not mutually exclusive). Protocol asked about participants’ definition of MIPHA, the extent and nature of MIPHA implementation at their organizations, barriers and facilitators of MIPHA and their vision for the future of MIPHA. Interviews were conducted between October 2022 and April 2023. Interviews were analyzed using a modified grounded method, starting with open coding to develop a codebook and then re-coded to develop thematic analysis.

Results. Interviews described a spectrum of MIPHA integration into HIV services ranging from rubber-stamp advisory committees to intentional power shifting and meaningful community-leadership. Participants described a MIPHA landscape full of gaps and insufficiencies. Specifically, efforts to involve people living with HIV in decision making were characterized by tokenism and lack of diversity (i.e. only reaching out to people living with HIV who have secondary education or who have held professional roles). Barriers included 1) gatekeeping through arbitrary restrictions such as degree requirements, opacity of language, use of Robert’s Rules of Order, cliquishness, 2) HIV stigma, which impedes willingness of people living with HIV to serve in public roles, 3) competing demands on time and other resources (both for people living with HIV and HIV service systems) and 4) organizational resistance to change. MIPHA is facilitated by intentionally developing the collectivity of people living with HIV, economic justice, strong organizational leadership and individual qualities (i.e. perseverance, opportunity seeking, commitment).

Conclusion. MIPHA is essential to promoting health justice for people living with and disproportionately impacted by HIV. MIPHA can be conceptualized as a form of health services ‘co-production’ through which service recipients are integrated into structures of service provision to enhance social impact. As such, lessons learned regarding integration of MIPHA into HIV services have implications for broader research on co-production processes in social work. This study was also an act of co-production and authors will share lessons learned in the participatory action research process.