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The Intersection of Diversity, Equity, and Inclusion with Pediatric Patient and Family Advisory Councils

by: Ndidi I. Unaka, Mindy Hoang, Jesse Hsu, Pam Dardess, Carlos T. Casillas, Meghan Fanta, Deborah L. Dokken, Andrew F. Beck

Researchers explored the prevalence and characteristics of Patient and Family Advisory Councils (PFACs), investigated the effects of the COVID-19 pandemic on PFACs, and the intersection with issues related to PFAC diversity, equity, and inclusion. This article focuses on recruitment, retention, and engagement of patient family advisors with diverse perspectives and backgrounds. Through a questionnaire and interviews, several themes emerged including the importance of diversity in PFACs membership, the effectiveness of personalized approaches to recruitment, and the challenges of meaningful engagement with historically marginalized patients and families. Findings from this study help inform strategies to promote diversity, equity, and inclusion within PFACs across hospital systems.

Journal Article

Associated Grant

Family-Led Academic Grand Rounds for Pediatrics

University of Wisconsin and Bluebird Way Foundation

Family-Led Academic Grand (FLAG) Rounds flips the traditional grand rounds model by embracing families and youth as primary medical educators. This pilot series will focus on different aspects of ableism in pediatric health care and the impact on children with medical complexity and their families.

Project Leadership Phase VII: Engaging Diverse Families for Health Care Systems Improvement

Family Voices of California

Project Leadership helps train California parents and family members to be advocates for CYSHCN and systems change. This grant will support the program’s expansion, as well as an initiative to increase diversity among family advocates.

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