Abstract
Multiple disabilities in children, present in various syndromes, involve physical, economic, and social problems and affect the parents of these children and their families. The attempt to learn more about this problem from a qualitative perspective gave rise to the current study's objective, namely to identify and summarize the scientific literature on the repercussions on the family from the birth and care of a child with multiple disabilities. This is a qualitative meta-synthesis of data from Scopus, PsycInfo, and SciELO, using the following descriptors: qualitative; children with disabilities; parent-child relations; family relations; and caregivers. The data were analyzed in three stages according to the method proposed by Noblit & Hare: extraction of first-order concepts; production of second-order concepts; and interpretative synthesis. After the search and eligibility process, eight studies were included, from which emerged six second-order concepts: social restriction; strain on family relations; feelings of affliction; financial instability; changes in the family dynamics; and stress to health and wellbeing. Three syntheses were developed, based on these concepts: disability and ideal parenthood; burden of care; and family redefinitions and adaptations. The studies showed that parents and families experience difficulties resulting from social representations of multiple disabilities and the burden of care (health problems, limitations to other activities, increased financial costs, and changes in the family's routine). They also indicate that these elements invade and can interfere in family and social relations.
Highlights
In Brazil, in 2015 and 2016, especially in the Northeast region, there was a significant increase in the number of children born with microcephaly and/or other alterations of the central nervous system (CNS) associated with congenital infections
Many clinical and epidemiological studies have been published on microcephaly and the alterations in growth and development related to Zika virus infection, but the literature contains little on the social and emotional impact and the financial burden for families and the preparation of health teams to address the challenge of caring for the children and their families over time 2
Box 1 Quality analysis of studies according to the Critical Appraisal Skills Programme (CASP) 11
Summary
In Brazil, in 2015 and 2016, especially in the Northeast region, there was a significant increase in the number of children born with microcephaly and/or other alterations of the central nervous system (CNS) associated with congenital infections. Many clinical and epidemiological studies have been published on microcephaly and the alterations in growth and development related to Zika virus infection, but the literature contains little on the social and emotional impact and the financial burden for families and the preparation of health teams to address the challenge of caring for the children and their families over time 2. To mitigate this gap, we conducted a literature review of diseases in which the disabilities (mental/visual/ hearing/physical) are similar to those caused by microcephaly and that dealt with the family repercussions of caring for children with such disabilities. We found the concept of multiple disabilities quite appropriate for this undertaking
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