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Researchers worked with family caregivers to incorporate their expertise on caregiving and lay a better foundation for successful integration between health care settings, family caregiving, and community supports for families of children and youth with special health care needs (CYSHCN). This article identifies high-priority gaps in CYSHCN caregiving research and proposes research questions that could increase the evidence-base for understanding of the work of family caregivers and how best to support them.

This article is part of a supplement to Academic Pediatrics that outlines a national health systems research agenda for CYSHCN. Learn more about the supplement and access all the articles.

Related Webinar: The lead authors and experts in the field review the article’s key content and discuss  implications of the recommendations.


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Drawn from a scan of all 50 U.S. states, this brief published by the National Academy for State Health Policy highlights strategies designed to address inequities in accessing pediatric specialty care and support equitable systems of care for CYSHCN.

The Children's Specialty Care Coalition hosted a virtual legislative briefing on the recently released commissioned report by the National Academies of Sciences, Engineering, and Medicine titled, "The Future Pediatric Subspecialty Physician Workforce: Meeting the Needs of Infants, Children, and Adolescents."