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.
ABSTRACT
In the midst of the COVID-19 pandemic, many qualitative and community-engaged researchers had to quickly shift from collecting data in person to utilizing virtual spaces. The foundation of community-based participatory research (CBPR) is authentic engagement and the establishment of trust between community and academic partners. We conducted a photovoice project that typically involves in-person sessions and revamped the process to be conducted virtually. The purpose of this article is to share how we navigated the process of conducting a virtual photovoice project with Black and white parents that explored parenting during the concurrent structural racism reckoning and COVID-19 pandemic, as well as share lessons learned. Despite the rapid shift from an in-person to virtual process, we were able to have an engaging conversation with participants that aligned with the core tenants of CBPR. Additionally, we overcame challenges through: (1) allotting extra time for unforeseen issues;(2) incorporating multiple activities to build trust and connection for participant-participant and participant-facilitator relationships;and (3) maintaining flexibility to meet the needs of the group. Ultimately, we learned several lessons through this project that may be applicable to community-engaged researchers deciding between conducting qualitative projects through traditional means or exploring alternative virtual options.