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

Caregiving encompasses the nurturing, tasks, resources, and services that meet the day-to-day needs of children and youth with special health care needs (CYSHCN) at home. The work of family caregivers of CYSHCN is known to be extensive, but it is so poorly understood that it has been described as “invisible”. This invisibility leads to poor communication and gaps in understanding between professional health care providers and family caregivers.

A growing body of research is attempting to remedy the problem of caregiving invisibility and lay better foundations for successful integration between health care settings, family caregiving, professional caregiving, and community supports for families of CYSHCN. This study from HIP Investigator Dr. Ryan Coller identifies high-priority gaps in CYSHCN caregiving research and proposes research questions that are designed to accelerate growth in evidence-based understanding of the work of family caregivers of CYSHCN and how best to support them.

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