Centering Community Voices: Evaluating Stakeholder Engagement in Pediatric Palliative Care Research.

Abstract

Context: Black and Native American children in the United States experience disparities in serious illness care and outcomes which are compounded by systemic inequities. These disparities necessitate research approaches that center the voices of racially minoritized families, combat systems of oppression, and promote culturally humble care. Community-based participatory research (CBPR) emphasizes engaging affected communities throughout the research process.

Objectives: In this evaluation, we assessed the engagement of a stakeholder advisory board (SAB) convened to guide a study about racism in pediatric serious illness care.

Methods: We used a mixed method combined process and outcome evaluation to explore SAB members' perceptions of meaningful participation in meetings and agency in influencing the project's direction. Themes from observation data, Zoom chat logs, and post-meeting surveys were synthesized using triangulation.

Results: Three themes emerged: consistent and active engagement, building connection through empathy and humor, and shared purpose and personal commitment. These findings suggest that members' relationships with each other and sense of purpose fueled sustained engagement. Real-time response to improvement suggestions by SAB members fostered trust with the research team and promoted members' understanding of their capacity within the project.

Conclusion: The SAB facilitated meaningful contributions toward the larger project from members and provided an emotionally supportive environment where participants could process shared experiences of racism in healthcare. The findings demonstrate the alignment between CBPR and values of palliative care and the value of iterative evaluation in community-engaged pediatric serious illness health equity research.