Abstract
BACKGROUND: 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 However, existing systematic reviews are outdated, over a decade old, and narrowly focused-primarily on hospital-based comprehensive care programs and family-centered care.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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.