P3.I174: Promoting shared leadership through participatory implementation science in equitable pediatric serious illness care research

Purpose/Objectives: Black and Native American populations in the US face a disproportionate burden of pediatric serious illness and receive lower-quality serious illness care. A stakeholder advisory board (SAB) was convened to inform a scoping literature review and 1:1 in-depth patient and family interviews exploring racism in pediatric serious illness as experienced by Black and Native American children and families. Engagement was evaluated to promote equitable and collaborative research, a critical consideration in community-based participatory research (CBPR) with populations that may face higher barriers to participation.

Design/Methods: A survey with fourteen Likert scale and three open-ended questions was distributed to SAB members after four meetings from Sept. 2022 - Jan. 2023. Observation and chat box data were also collected. Data were analyzed using reflexive thematic analysis and descriptive statistics. Themes were collated and summarized across data sources using triangulation.

Results: Triangulation revealed four themes: high engagement, connection and empathy in communication, significance of the work, and areas for improvement. The survey indicated high engagement which was validated by high levels of acknowledgement in the Zoom chat and reactive body language in observation data. Communication and the importance of the work were evidenced by gratitude expressed for the opportunity to share stories and effect change. Surveys enabled rapid response to feedback, fostering trust and transparency between the SAB and research team.

Conclusion/Discussion: This study highlights the potential of CBPR to advance health equity in pediatric palliative care. Notably, evaluating stakeholder engagement further centers the experiences of marginalized populations, advances inclusive and equitable research practices, and fosters trust with the community.