St. Louis Enhancing Engagement and Retention in HIV/AIDS Care (STEER): a participatory intersectional needs assessment for intervention and implementation planning

Background Missouri is one of seven priority states identified by the Ending the HIV Epidemic Initiative, and St. Louis contains almost half of the people living with HIV (PLWH) in Missouri. As St. Louis has a marked history of structural racism and economic inequities, we utilized the Intersectionality Based Policy Analysis (IBPA) framework to guide a participatory needs assessment for planning and program development. Methods The planning team included researchers, the lead implementer from our community partner, and two community representatives, and had biweekly 60-90 minute meetings for 18 months. The planning team discussed and approved all research materials, reviewed and interpreted results, and made decisions about outreach, recruitment, conduct of the needs assessment and development of the planned intervention. The needs assessment integrated information from existing data, (1) interviews with (a) PLWH (n=12), (b) community leaders (n=5), (c) clinical leaders (n=4), and (d) community health workers (CHWs) (n=3) and (e) CHW supervisors (n=3) who participated in a Boston University-led demonstration project on CHWs in the context of HIV and (2) focus groups (2 FG, 12 participants) with front line health workers such as peer specialists, health coaches and outreach workers. A rapid qualitative analysis approach was used for all interviews and focus groups. Results The IBPA was used to guide team discussions of team values, definition and framing of the problem, questions and topics in the key informant interviews, and implementation strategies. Applying the IBPA framework contributed to a focus on intersectional drivers of inequities in HIV services. The effective management of HIV faces significant challenges from high provider turnover, insufficient integration of CHWs into care teams, and organizational limitations in tailoring treatment plans. Increasing use of CHWs for HIV treatment and prevention also faces challenges. People living with HIV (PLWH) encounter multiple barriers such as stigma, lack of social support, co-morbidities, medication side effects and difficulties in meeting basic needs. Conclusions Addressing intersectional drivers of health inequities may require multi-level, structural approaches. We see the IBPA as a valuable tool for participatory planning while integrating community engagement principles in program and implementation design for improving HIV outcomes.