Integrating People With Lived Experience of Carceral System Involvement Into Research: Lessons Learned From Ending the HIV Epidemic Research Teams

Background:The National HIV/AIDS Strategy for the United States 2022-2025 emphasized carceral settings for the first time in the national strategy. Centering impacted people can take many forms and is critical to improving the HIV care continuum among people with carceral system involvement (CSI) to meet national Ending the HIV Epidemic goals.Methods:We provide a narrative synthesis of the barriers and facilitators of including people with CSI in different aspects of the research process across 5 Ending the HIV Epidemic studies. Data were collected from each team using a data collection form with open-ended questions. A qualitative thematic analysis identified strategies, barriers, and facilitators across studies.Findings:Major barriers to including people with CSI in research included institutional policies surrounding participant compensation and hiring practices, as well as a misalignment between the study objectives and the perceived needs of participants. Successful strategies for including people with CSI as part of the research team included providing training, support, and space for emotional processing and self-care to aid in managing the vicarious trauma and boundary setting that are unavoidable parts of this work. Successful strategies for including people with CSI as research participants include flexible research protocols and providing material support for participants in addition to cash payments for participation.Conclusions:It is imperative to create sustainable and equitable, community-engaged research practices that continue to center CSI populations during their involvement in all aspects of HIV-related research studies.