“Advocating for what we need”: A Community-Based Participatory Research Approach to Advance Care Planning in the San Francisco Latinx Elder Community

Abstract

Background Advance care planning (ACP) is associated with important positive outcomes, including higher satisfaction with care and lower surrogate distress. However, engagement in ACP is low among Latinx older adults. This is the first study to use community-based participatory research (CBPR)—a method known to reduce health disparities—to identify ACP barriers/facilitators and design community-based ACP events. Methods In partnership with community-based organizations, clinicians, and local government in San Francisco (SF), we formed a Latinx Community Committee (N=13 community members) to lead this project from 9/2020-8/2021. We recruited Latinx-identifying, Spanish- or English-speaking older adults (age≥55), caregivers, and community leaders for focus groups. We conducted 6 focus groups in English and Spanish assessing ACP barriers/facilitators and analyzed data using thematic analysis. Based on focus group findings, we designed and implemented community-based ACP events that incorporated new (e.g., artwork used for messaging/advertising, testimonials from patients/physicians) and existing (e.g., Prepare for Your Care) culturally appropriate ACP materials, and targeted Latinx LGBTQI+, intergenerational, and older adult populations. We advertised events through various channels (e.g., flyers, phone calls, radio, social media) in SF Latinx communities. Using a validated survey at the events, we assessed acceptability (i.e., comfort attending, willingness to recommend to others) and pre- vs post-event readiness to engage in ACP (4-point scale; 4=most ready) with Wilcoxon signed rank tests. Results Focus groups included 10 older adults, 8 caregivers, and 10 community leaders. Themes highlighted the importance (e.g., means of advocacy), barriers (e.g., how to start ACP conversation), and facilitators (e.g., trusted community spaces) of ACP in the Latinx community. Ninety-seven people attended 5 pilot events; they were 59.4 (SD 19.2) years old, 81.7% Latinx, 5.6% Black, 64.8% Spanish-speaking, 32.4% sexual/gender minorities. Overall ACP readiness increased from 2.62/4 (SD 0.97) to 2.95 (SD 0.93; P=0.05). Specifically, participants’ readiness to document their wishes for medical care in writing increased significantly (P=0.003). Most people were comfortable attending events (85%) and would recommend them to others (90%). Conclusion This study describes a feasible, acceptable, and effective CBPR ACP intervention. Co-developed community events represent a promising approach to reducing disparities in ACP among the Latinx population.