The DECIDE Pilot Study: using Community Engagement to explore Surrogate Decision-Making for HIV + African Americans in an urban syndemic

Abstract

Background: Patient-centered communication and trusting relationships are central to effective clinical management for people living with the chronic illness of human immunodeficiency virus (HIV). Advance Care Planning (ACP) is a recognized strategy to improve health outcomes for individuals with serious illnesses. Despite its importance, African Americans living with HIV (AAHIV) often experience barriers to ACP, including historical mistrust in the healthcare system and low health literacy. This pilot study aimed to assess the feasibility and acceptability of discussing surrogate decision-making and ACP within one urban syndemic setting through a community-engaged research approach.

Methods: The DECIDE study was a one-year translational research pilot, aimed to assess an academic- community research team in one eastern urban setting. We used mixed methods with a Community Engagement in Research (CEnR) approach to realize community input. Participants were recruited through local HIV/AIDS service organizations. A 19-item survey assessed ACP awareness and behaviors (n=75) and focus group members (n=31) explored attitudes toward surrogate decision-making using a CAP-generated scenario. Data analysis included descriptive statistics for the survey and thematic analysis for focus group discussions.

Results: Survey results indicated that after the COVID pandemic, 45% of participants had never heard of ACP, 37% had created an ACP document, and 73% had discussed their treatment preferences. Approximately 49% of participants had named a health proxy, although only 45% of those individuals had discussed their values with the proxy. A community-constructed scenario led to rapid assembly and valuable discourse among focus group members. Focus group findings revealed a strong desire for more opportunities to rehearse ACP conversations and a significant mistrust of healthcare systems. Participants expressed the need for continued, community- based educational efforts to address these issues.

Conclusion: The DECIDE pilot demonstrates that community engagement is feasible, acceptable and an effective method to promote ACP and surrogate decision-making among African Americans living with HIV in a syndemic setting. Future research should address systemic barriers, trust-building, and the integration of sustainable educational activities for improving community health practices.