Community Engagement to explore Surrogate Decision-Making for HIV+ African Americans: a pilot study

Patient-centered communication and trusting relationships are central to effective clinical management for anyone living with chronic illness. For those able to access and continue effective medications, aging with the human immunodeficiency virus (HIV) is now like aging with any chronic illness. Advance Care Planning (ACP) has been 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 having lived in a syndemic environment where low health literacy and historical mistrust of the healthcare system are inherent. Our clinically translational pilot study aimed to evaluate the feasibility and acceptability of discussing surrogate decision-making and ACP within an urban syndemic using a community-engaged research approach to improve individual outcomes.

This was a one-year translational research pilot, to tryout a newfound academic-community research team formed during COVID-19 in one eastern urban setting. We used Community Engagement in Research (CEnR) and mixed methods to evaluate the impact of community input on Focus Group activities. Participants were recruited through local HIV/AIDS service organizations. A 19-item survey assessed ACP awareness and behaviors (n=75) and focus group discussion (n=34) explored barriers and facilitators of surrogate decision-making prompted by a community-generated scenario. Data analysis included descriptive statistics for the survey and thematic analysis for focus group discussions.

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

The DECIDE translational pilot endorses the literature that community engagement is feasible, acceptable and effective in syndemic settings. Use of a community-generated scenario rapidly engaged participants in meaningful talk about surrogate decision-making among African Americans living with HIV. CEnR accelerated data collection about a potentially avoided topic for participants living in syndemic settings. Future research should address systemic barriers, trust-building, and community engagement in sustainable educational activities for improving community health practices.