The experience of informal caregivers of children with disabilities: objective and subjective burden - a systematic review

Abstract

Objective: Describe the experience of informal caregivers of children with disabilities to understand the burden of caregiving. Methods: This article uses the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA), we defined study inclusion criteria using a PICOS scheme. Essentially, we included only studies that reported data on documents related to caregivers: fathers and mothers of children, adolescents, and adults (P = Population) who diagnosed with any type of disability (I = Intervention), compared to formal caregivers (C = Comparison), and that these parents had the experience of being a caregiver (O = Outcome). In terms of study design, studies with any type of design were included to get a broader view of how existing research has addressed the issue, and a full understanding of the implications of informal caregiving (S = Study Design). The thematic research was carried out in the thesauri of MeSH, my NCBI, PubMed and Scopus. The MeSH terms were used in databases the search was guided by the terms suggested in their Thesaurus tool. Results: The initial search retrieved 136 records. After duplicates were removed (n = 86), the remaining 50 records (titles and abstracts) were screened against our study inclusion criteria, resulting in the exclusion of another 30. Titles not relevant or unrelated to the topic; titles mentioning disability, but not parents; those alluding to formal care; those describing formal medical or nursing care; and those describing nursing caregivers were excluded. Conclusion: A promising avenue for addressing informal caregiving emerges by delving into the need to propose interventions that improve the physical and mental health of caregivers. These interventions should urgently focus on the mental health of mothers, who present greater psychological distress than fathers. It is necessary to propose programs that reveal the need to care for the caregiver, according to the subjective burden (stress); and programs that promote the care of children with disabilities (objective burden), who may be affected by the mental health of their caregiver.