Abstract
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. Many gaps exist in the strategies currently offered by the health care system to meet the caregiving needs of CYSHCN. 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. To address these gaps, health care researchers must work with family caregivers to incorporate their expertise on caregiving and create meaningful and sustainable research partnerships. 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. We identify high-priority gaps in CYSHCN caregiving research and propose 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.
| Original language | English (US) |
|---|---|
| Pages (from-to) | S14-S21 |
| Journal | Academic Pediatrics |
| Volume | 22 |
| Issue number | 2 |
| DOIs | |
| State | Published - Mar 2022 |
Funding
This program is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under UA6MC31101 Children and Youth with Special Health Care Needs Research Network. The content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS, and the U.S. Government. Financial statement: Funded by a grant from the Lucile Packard Foundation for Children's Health, Palo Alto, California. This paper is part of a supplement supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) and the Lucile Packard Foundation for Children's Health's Program for Children with Special Health Care Needs. This program is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under UA6MC31101 Children and Youth with Special Health Care Needs Research Network. The content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS, and the U.S. Government. Financial statement: Funded by a grant from the Lucile Packard Foundation for Children's Health, Palo Alto, California. LPFCH funding: Support for this work was provided by the Lucile Packard Foundation for Children's Health's Program for Children with Special Health Care Needs. We invest in creating a more efficient system that ensures high-quality, coordinated, family-centered care to improve health outcomes for children and enhance quality of life for families. The views presented here are those of the authors and do not reflect those of the Foundation or its staff. This paper is part of a supplement supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) and the Lucile Packard Foundation for Children's Health's Program for Children with Special Health Care Needs.
Keywords
- caregiving
- family engagement
- home health
- research agenda
ASJC Scopus subject areas
- Pediatrics, Perinatology, and Child Health