Qualidade de vida das famílias e dos irmãos de crianças e adolescentes com paralisia cerebral e com mielomeningocele

Abstract

Cerebral palsy is one of the main causes of childhood disability and myelomeningocele is one of the most common congenital malformations. In both conditions, the functional consequences and comorbidities generate impacts on the caregiver's burden and on the family and siblings’ quality of life. Such dimensions interact dynamically according to characteristics of caregivers, family and siblings. The general objective of this study was to separately characterize caregivers’ burden, family and siblings’ quality of life of children with cerebral palsy and myelomeningocele. The secondary objectives were to verify the correlations between caregivers’ burden, family and siblings’ quality of life, the correlations between caregivers’ burden, family and siblings’ quality of life with sociodemographic, functional and clinical variables of the patients and the quality of life of siblings using as a parameter the quality of life of Brazilian peers with typical development. A cross-sectional study was carried out. The 212 families, 212 caregivers and 131 siblings of children with cerebral palsy and the 150 families, 150 caregivers and 68 siblings of children with myelomeningocele completed the Family Quality of Life Scale, Burden Interview, and KIDSCREEN-27 Child and Adolescent and Parents Version questionnaires. Univariate and multivariate models were constructed. In both samples, family quality of life and caregivers' burden were important factors that significantly influenced each other. The family quality of life was significantly lower in those with greater caregivers’ burden, which was significantly lower as the family quality of life increased, and siblings had a significantly worse quality of life than that of Brazilian children and adolescents with typical development. In the cerebral palsy sample, the family quality of life was significantly higher in families with a low educational level, the self-reported quality of life of siblings was significantly lower with increasing age of siblings and caregiver burden, and in families with two legal guardians and siblings' quality of life outcomes reported by the parents were worse and better, respectively, as caregiver burden and family quality of life increased. In the myelomeningocele sample, siblings' self-reported quality of life was significantly worse as age increased and better as family quality of life levels increased, and siblings' parent-reported quality of life was worse and better, respectively, with higher levels of caregiver burden and family quality of life. Although the cross-sectional nature of the available data prevents assertions of causality, the results reinforce the relevance of knowing the factors that influence the quality of life of families and siblings of children with cerebral palsy and meningomyelocele and of actions aimed at reducing the burden on caregivers, improving the family quality of life and meeting the siblings’ individual needs. Future multicenter studies may validate the generalizability of our results.