Dados do Trabalho

Título

QUALITY OF LIFE OF FAMILIES AND SIBLINGS OF CHILDREN AND ADOLESCENTS WITH MENINGOMYELOCELE

Introdução

Children with meningomyelocele may require continuous care. Consequently, there is a risk for caregiver burden and impact on family quality of life, including siblings' quality of life. Some studies analysed caregivers' burden and family quality of life separately. However, none of these studies evaluated siblings' quality of life and the associations between these three dimensions.

Objetivo

This study investigated the associations between caregivers' burden, family quality of life and siblings' quality of life in Brazilian families of children with meningomyelocele and its correlations with sociodemographic, functional and clinical variables. Siblings' quality of life was specifically assessed using as a parameter the quality of life of typically developed Brazilian children

Método

One hundred and fifty families, 150 caregivers and 68 siblings completed the Family Quality of Life Scale, Burden Interview, KIDSCREEN-27 Child and Adolescent Version and Parents Version questionnaires.

Resultados

Family quality of life was significantly lower as caregivers' burden increased. Caregiver's burden was significantly lower with increasing family quality of life levels. Self-reported siblings' quality of life was significantly worse than that of typically developed peers. There
were no significant differences between self and parent-reported siblings'quality of life. Self-reported siblings' quality of life was significantly worse as their age increased and better with increasing family quality of life levels. Parent-reported siblings' quality of life was significantly worse with increasing levels of caregiver's burden and significantly better as family quality of life increased. There were no significant associations with functional and clinical variables.

Conclusão

Despite the cross-sectional nature of the available data precludes any statements of causality, our results reinforce the relevance of knowing the factors that influence the quality of life of families and siblings of children and adolescents with
meningomyelocele and the relevance of actions aimed at reducing caregivers' burden, improving family quality of life and meeting siblings' individual needs. Future multicenter studies may validate the generalizability of our findings.

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Palavras Chave

meningomyelocele; quality of life; siblings