Extending Advance Care Planning to Black Americans in the Community: A Pilot Study of the PREPARE Program

Abstract

Context: Advance care planning (ACP) is underutilized, especially among Black Americans. Yet, no ACP interventions have been tested at the community level.

Objectives: Within an established academic and community partnership, we sought to determine whether ACP is a community-identified need and if so, to conduct a pilot study of an evidence-based ACP program, PREPARE (PrepareForYourCare.org).

Methods: We conducted open discussions and in-depth interviews to determine the relevance of ACP to the community. We then conducted a pre- to 3-week postpilot study of a virtual peer facilitated brief session to introduce ACP and encourage participants to engage with PREPARE. We conducted thematic content analysis for qualitative data and used paired t-tests to assess within-participant changes in the validated ACP Engagement Survey measured on a 1-5 scale (5 = greatest engagement).

Result: We conducted two discussion groups with community leaders (n = 12) and key informant interviews (n = 6), including leaders in aging, public health, health care and faith. We concluded that ACP is a community priority. In the pilot study, we enrolled 13 Black Americans; 85% were women and the mean age was 59.7 years (SD 15.1). There was a trend toward increased ACP engagement after the peer facilitated PREPARE (mean 3.2 (SD 0.6) pre vs. 3.5 (SD 0.6) post, paired t-test P = 0.06). All participants found the intervention to be acceptable and were satisfied with it.

Conclusion: Community members identified ACP as important for their community. Peer facilitated PREPARE program is a promising community-based strategy to increase engagement in ACP and may promote health equity.

Keywords: Advance care planning; black Americans; community based participatory research.