Patient and family advisory councils (PFACs) advance patient- and family-centered care within children’s hospitals but may not reflect the diversity of the communities they serve. We sought to assess PFAC diversity among children’s hospitals and explore barriers, drivers, and enablers of recruitment, retention, and engagement of patient and family advisors (PFAs) with diverse perspectives and backgrounds. We performed a mixed methods study to evaluate structure, composition, recruitment, and engagement strategies of children’s hospital PFACs. Individuals likely to have knowledge of or responsibility for PFACs at each Children’s Hospital Association (CHA) member hospital were asked to complete an electronic questionnaire. A subset of respondents from hospitals varying in size and region participated in 1-hour virtual interviews. We received valid responses from 166 (73%) of 228 CHA member hospitals. Eighty-eight percent reported having at least one PFAC. Only 21% selected “definitely true” when asked if their PFACs reflected the racial and ethnic diversity of the community served. Twelve respondents from various children’s hospitals participated in qualitative interviews. Five themes emerged: 1) Importance of Diversity in PFAC Membership; 2) Targeted, Personalized Recruitment and Engagement Strategies Facilitate Diverse PFACs; 3) Importance of Supporting PFAs from Diverse Backgrounds; 4) Ample Opportunities to Engage PFAs in Institutional Diversity, Equity, and Inclusion Efforts; and 5) External Factors as Drivers for Change within PFACs. Many PFACs are working to increase diversity, equity, and inclusion, but opportunities to close gaps remain. Findings may inform strategies to promote diversity, equity, and inclusion within PFACs across hospital systems.

Experience Framework

This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework).