Nonoyama Tomo, Kadoma Akiko, Kaneko Taro, Niinomi Kazuteru, Ozaki Itsuko, Asano Midori
Nursing Science, Department of Integrated Health Sciences, Graduate School of Medicine, Nagoya University, Nagoya, Aichi, Japan.
Community Health Nursing, Graduate School of Nursing, Nagoya City University, Nagoya, Aichi, Japan.
Medicine (Baltimore). 2025 Mar 21;104(12):e41944. doi: 10.1097/MD.0000000000041944.
Advances in medical technology have increased the identification of children with special healthcare needs (CSHCN), indicating the need to strengthen care systems. However, existing systematic reviews are outdated, over a decade old, and narrowly focused-primarily on hospital-based comprehensive care programs and family-centered care. This scoping review aimed to organize and integrate existing findings on care and support for CSHCN and their families from the available literature.
We employed an extensive search in December 2023, utilizing databases such as PubMed, Web of Science, CINAHL, ERIC, and The Cochrane Library. Selected articles were thoroughly reviewed, categorized, and organized by the type of care and support addressed. The findings of the included studies were organized and integrated descriptively.
Following a comprehensive search and screening process, 49 articles were selected and categorized into 5 themes: care systems based on hospitals and other specialized institutions, specialized personnel or programs for care coordination/integrated care, support using telehealth technology to enhance and facilitate care, care aimed at reducing the psychological burden on the child and family, and peer and group support emphasizing the role of family and community. Publication years ranged from 1998 to 2023. The studies were conducted in 7 countries, predominantly in the United States, with additional studies from Canada, Australia, the United Kingdom, Japan, India, and Belgium.
This study underscores the importance of establishing effective care systems that ensure continuous and smooth care coordination from multiple perspectives for the well-being of CSHCN and their families. To enhance support systems for the well-being of CSHCN and their families, it is necessary to pursue a multi-faceted approach that facilitates continuous and smooth care coordination from various perspectives.
医疗技术的进步使得患有特殊医疗需求的儿童（CSHCN）的识别率有所提高，这表明需要加强护理系统。然而，现有的系统评价已经过时，距今已有十多年，且关注点较为狭窄——主要集中在基于医院的综合护理项目和以家庭为中心的护理上。本范围综述旨在整理和整合现有文献中关于CSHCN及其家庭的护理和支持的研究结果。
我们于2023年12月进行了广泛检索，利用了PubMed、科学网、护理学与健康领域数据库（CINAHL）、教育资源信息中心（ERIC）和考克兰图书馆等数据库。对所选文章进行了全面审查，并根据所涉及的护理和支持类型进行分类和整理。对纳入研究的结果进行了描述性的组织和整合。
经过全面的检索和筛选过程，共选出49篇文章，并分为5个主题：基于医院和其他专业机构的护理系统、用于护理协调/综合护理的专业人员或项目、利用远程医疗技术加强和促进护理的支持、旨在减轻儿童和家庭心理负担的护理，以及强调家庭和社区作用的同伴和团体支持。发表年份从1998年到2023年。这些研究在7个国家开展，主要是在美国，另外还有来自加拿大、澳大利亚、英国、日本、印度和比利时的研究。
本研究强调了建立有效护理系统的重要性，该系统应从多个角度确保为CSHCN及其家庭提供持续、顺畅的护理协调。为了加强对CSHCN及其家庭福祉的支持系统，有必要采取多方面的方法，从各种角度促进持续、顺畅的护理协调。
