Systems and Standards Journal Articles
January 26, 2022

Understanding Caregiving and Caregivers: Supporting Children and Youth With Special Health Care Needs at Home

By: Clarissa G. Hoover, Ryan J. Coller, Amy Houtrow, Debbi Harris, Rishi Agrawal, Renee Turchi

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.