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Understanding Caregiving and Caregivers: Supporting Children and Youth With Special Health Care Needs at Home
Journal article   Open access   Peer reviewed

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

Clarissa G. Hoover, Ryan J. Coller, Amy Houtrow, Debbi Harris, Rishi Agrawal and Renee Turchi
Academic pediatrics, v 22(2), pp S14-S21
Mar 2022
PMID: 35248243
url
https://doi.org/10.1016/j.acap.2021.10.007View
Published, Version of Record (VoR)Maybe Open Access (Publisher Bronze) Open

Abstract

caregiving family engagement home health research agenda
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.

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23 citations in Scopus

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UN Sustainable Development Goals (SDGs)

This publication has contributed to the advancement of the following goals:

#3 Good Health and Well-Being

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Collaboration types
Domestic collaboration
Web of Science research areas
Pediatrics
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