“Advocating for what we need”: A <scp>CBPR</scp> approach to advance care planning in the Latinx older adult community
Sarah Nouri, Charissa H. Tan, Mirella Rangel, Molly Wertz, Adriana Sánchez, Aurora Mariana Alvarado, Erika Arreola, Mara Quinn, Steven Z. Pantilat, Courtney R. Lyles, Christine S. Ritchie, Rebecca L. Sudore
Abstract
BACKGROUND: Advance care planning (ACP) is low among Latinx older adults. We used community-based participatory research (CBPR) to identify ACP barriers/facilitators and design community-based ACP events. METHODS: In partnership with community-based organizations, clinicians, and local government, we formed a Latinx Community Committee (n = 13 community members). We then conducted 6 focus groups with Latinx-identifying, English or Spanish-speaking older adults (age ≥ 55), caregivers, and community leaders to assess ACP barriers/facilitators. We analyzed transcripts using thematic analysis and, based on these learnings, designed and implemented community-based ACP events. Using a validated survey, we assessed acceptability and pre-to-post-event ACP readiness (4-point scale; 4 = most ready; 0.2 change considered meaningful) with Wilcoxon signed-rank tests. RESULTS: Focus groups included 10 Spanish-speaking older adults, 8 caregivers, and 10 community leaders. Themes highlighted the importance of ACP (e.g., means of advocacy), barriers (e.g., how to start conversations), and facilitators (e.g., trusted community spaces) in the Latinx community. Ninety-seven people attended 5 events targeting 3 Latinx populations (LGBTQI+, intergenerational, and older adults broadly). Overall pre-to-post-event ACP readiness increased (2.62 (SD 0.97) to 2.95 (SD 0.93); p = 0.05). Readiness to document wishes increased significantly (2.44 (SD 1.0) to 2.98 (SD 0.95); p = 0.003). Most reported being comfortable attending events (85%) and would recommend them to others (90%). CONCLUSIONS: 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.