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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.

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Findings from a survey of California-based caregivers that asked them about their experiences receiving peer support for caring for children and youth with special health care needs.

This fact sheet explains the methods used in a study of California caregivers of CYSHCN, including the study’s purpose, survey instrument, sample, survey distribution, data analysis, and more.