Sulino-Gonçalves Mariane Caetano, Lima Regina Aparecida Garcia de, Jardim Fabrine Aguilar, Okido Aline Cristiane Cavicchioli, Cassemiro Larissa Karoline Dias da Silva, Nascimento Lucila Castanheira, Jerez-Molina Carmen, Maia Edmara Bazoni Soares, Melo Elsa Maria de Oliveira Pinheiro de, Lopes-Júnior Luís Carlos
Universidade de São Paulo, Escola de Enfermagem de Ribeirão Preto, Ribeirão Preto, SP, Brazil.
Universitat de Vic - Universitat Central de Catalunya, Campus Docent Sant Joan de Déu, Barcelona, Spain.
Rev Esc Enferm USP. 2025 Jul 7;59:e20240368. doi: 10.1590/1980-220X-REEUSP-2024-0368en. eCollection 2025.
To map and synthesize evidence related to the types and strategies of social support used by family caregivers of children and youth with special health care needs to ensure the continuity of home care.
This scoping review was conducted in accordance with the JBI methodology guidelines for Evidence Synthesis and reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Eight databases were used: Cochrane Library, Embase, MEDLINE/PubMed, CINAHL, SCOPUS, Web of Science, PsycINFO and LILACS, as well as additional sources and reference lists of the included studies.
Twenty-two studies were included, presenting social support in two dimensions: informal and formal. The support strategies identified comprised groups of parents whose children share similar care needs, online parent forums, financial assistance, prayers, support from religious institutions, and temporary caregivers. Among the gaps that impact the continuity of home care are the lack of information about rights and benefits, as well as insufficient psychological support for family caregivers.
The mapped studies showed how important a competent and structured social support network is in the lives of family caregivers, serving as an essential resource for the continuity of home care.
梳理并综合与有特殊医疗需求的儿童及青少年家庭照护者所使用的社会支持类型及策略相关的证据，以确保家庭照护的连续性。
本范围综述按照循证卫生保健国际协作网（JBI）证据综合方法指南开展，并依据系统评价与Meta分析扩展版的范围综述报告规范（PRISMA-ScR）进行报告。使用了八个数据库：Cochrane图书馆、Embase、MEDLINE/PubMed、护理学与健康领域数据库（CINAHL）、Scopus、科学引文索引（Web of Science）、心理学文摘数据库（PsycINFO）和拉丁美洲及加勒比地区卫生科学数据库（LILACS），以及纳入研究的其他来源和参考文献列表。
纳入了22项研究，从非正式和正式两个维度呈现了社会支持情况。所确定的支持策略包括孩子有相似照护需求的家长群体、在线家长论坛、经济援助、祈祷、宗教机构的支持以及临时照护者。影响家庭照护连续性的差距包括缺乏关于权利和福利的信息，以及对家庭照护者的心理支持不足。
所梳理的研究表明，一个能干且结构化的社会支持网络在家庭照护者的生活中是多么重要，它是家庭照护连续性的重要资源。
