Impacts of the COVID-19 Pandemic on a Community-Based, Palliative Care Lay Advisor Project for Latinos with Cancer

Abstract

The COVID-19 pandemic posed challenges to a community-based participatory research (CBPR) project for rural-dwelling adults with cancer in eastern North Carolina. This project trained Latino community leaders as palliative care lay advisors (PCLAs) to deliver information on cancer symptom management and advance care planning (ACP). Pandemic impacts were assessed using data from team meetings and fieldnotes, journal memos, online booster sessions, participant encounter forms and digital correspondence. Three key results were: 1) the disproportionate effects of COVID -19 on PCLAs and their communities; 2) the need for a major study redesign that extended the recruitment region and changed the mode of intervention delivery; and 3) the adoption of new channels of communication. Online discussions and in-person meetings with PCLAs sustained engagement, resulting in a two-year, 73 percent retention rate, and addressed community concerns about COVID-19. Applied outcomes included the selection by the regional cancer center of a 2022 goal to improve cultural care for Latinos and the empowerment of PCLAs as community advocates. The challenges created by COVID-19 were met by the study team’s ongoing commitment to CBPR principles, flexible adaptations to a changing environment, and strong relationships forged with community members and advocacy groups.