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Health systems are designed to support children and youth with special health care needs (CYSHCN) but do not often consider the health and well-being of their family. Despite a growing body of literature, substantial gaps remain in understanding the impact of caregiving on family health and well-being and the provision of supports for families. This article describes the current state of research on the health of families of CYSHCN and provides recommendations for future investigation. The authors highlight three primary areas of investigation: 

  1. How can we measure and improve family strength and adaptation when caring for children and youth with special health care needs?  
  2. How can we help families with mental health needs?  
  3. How does a family’s health affect the health of their child or children with special health care needs?  

The authors recommend focusing on resiliency and adaptability as outcomes, using implementation science to address mental health concerns of family members, and to further assess the impact of family health on health outcomes of CYSHCN. In addition, research should have a special focus on populations of families from all backgrounds and consider these questions in the context of a variety of family structures.

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 Grants

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.