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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 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.