Family Voices (CG Hoover), Lexington, Mass.
Department of Pediatrics (RJ Coller), School of Medicine and Public Health, University of Wisconsin-Madison, Madison, Win.
Acad Pediatr. 2022 Mar;22(2S):S14-S21. doi: 10.1016/j.acap.2021.10.007. Epub 2022 Jan 31.
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.
照料涵盖了为有特殊医疗需求的儿童和青少年（CYSHCN）在家中提供日常所需的养育、任务、资源和服务。医疗保健系统目前提供的满足 CYSHCN 照料需求的策略存在许多差距。CYSHCN 家庭照料者的工作范围广泛，但由于人们对其了解甚少，以至于被描述为“无形的”。这种无形性导致专业医疗保健提供者和家庭照料者之间沟通不畅，理解存在差距。为了解决这些差距，医疗保健研究人员必须与家庭照料者合作，将他们在照料方面的专业知识纳入其中，并建立有意义且可持续的研究伙伴关系。越来越多的研究试图解决照料者无形性的问题，并为医疗保健环境、家庭照料、专业照料以及 CYSHCN 家庭社区支持之间的成功整合奠定更好的基础。我们确定了 CYSHCN 照料研究中的高优先级差距，并提出了研究问题，旨在加速基于证据的对 CYSHCN 家庭照料者工作的理解，并找到支持他们的最佳方法。
