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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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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 policy brief by the National Alliance to Advance Adolescent Health looks at what happens when low-income youth and young adults with chronic conditions and disabilities age out of the Title V Program for Children and Youth with Special Health Care Needs and provides policy recommendations.