Social support for family caregivers of children and youth with special health care needs for home care: a scoping review.

Abstract

Objective: 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.

Method: 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.

Results: 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.

Conclusion: 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.