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

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Summary

Community engagement effectively addressed barriers to Advance Care Planning (ACP) for African Americans with HIV (AAHIV) in urban syndemic settings. This pilot study highlights the need for continued education and trust-building to improve health outcomes.

Keywords:
Advance Care PlanningAfrican AmericanCommunity EngagementHIV/AIDSSurrogate Decision-MakerTraining SupportTrust - Trustworthinessanthropologychronic serious illnesssyndemics

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Area of Science:

  • Public Health
  • Translational Research
  • Community-Based Participatory Research

Background:

  • Aging with HIV is comparable to managing other chronic illnesses, emphasizing the need for effective patient-centered communication.
  • Advance Care Planning (ACP) is crucial for serious illnesses but faces barriers among African Americans living with HIV (AAHIV), including low health literacy and historical healthcare mistrust within syndemic environments.
  • A pilot study utilized a community-engaged approach to explore surrogate decision-making and ACP discussions in an urban syndemic setting.

Purpose of the Study:

  • To evaluate the feasibility and acceptability of discussing surrogate decision-making and ACP among AAHIV.
  • To assess the impact of community input on focus group activities using Community Engagement in Research (CEnR).
  • To identify barriers and facilitators to ACP among AAHIV in a syndemic context.

Main Methods:

  • A one-year translational research pilot involving an academic-community research team.
  • Mixed methods approach including a 19-item survey (n=75) on ACP awareness and behaviors and focus group discussions (n=34).
  • Community-generated scenarios were used to prompt discussions on surrogate decision-making and ACP.

Main Results:

  • Post-pandemic, 45% of participants were unaware of ACP; among those aware, only 37% had created an ACP document.
  • Nearly half of participants (49%) named a health proxy, but only 45% discussed values with them.
  • Focus groups revealed a desire for ACP conversation practice and persistent mistrust of healthcare systems, underscoring the need for community-based education.

Conclusions:

  • Community engagement is feasible, acceptable, and effective in syndemic settings for discussing sensitive health topics like ACP.
  • A community-generated scenario facilitated meaningful dialogue about surrogate decision-making among AAHIV.
  • Future research should focus on systemic barriers, trust-building, and sustainable community-based educational initiatives to enhance health practices.