Quality of life of families and siblings of children with cerebral palsy treated at a reference neurorehabilitation center in Brazil

Bruno Leonardo Scofano Dias; Maura Calixto Cecherelli de Rodrigues; José Luiz Muniz Bandeira Duarte

doi:10.1016/j.jped.2024.03.010

Quality of life of families and siblings of children with cerebral palsy treated at a reference neurorehabilitation center in Brazil

J Pediatr (Rio J). 2024 Apr 22:S0021-7557(24)00043-3. doi: 10.1016/j.jped.2024.03.010. Online ahead of print.

Authors

Bruno Leonardo Scofano Dias¹, Maura Calixto Cecherelli de Rodrigues², José Luiz Muniz Bandeira Duarte²

Affiliations

¹ Rede SARAH de Hospitais de Reabilitação, Rio de Janeiro, RJ, Brazil; Universidade do Estado do Rio de Janeiro (UERJ), Faculdade de Ciências Médicas, Programa de Pós-Graduação em Ciências Médicas, Rio de Janeiro, RJ, Brazil. Electronic address: 9823@sarah.br.
² Universidade do Estado do Rio de Janeiro (UERJ), Faculdade de Ciências Médicas, Departamento de Pediatria, Rio de Janeiro, RJ, Brazil.

PMID: 38663449
DOI: 10.1016/j.jped.2024.03.010

Abstract

Objectives: To investigate the associations between caregivers' burden, family quality of life (QoL), and siblings' QoL in Brazilian families of children with cerebral palsy, and to analyze siblings' QoL using as a parameter the QoL of typically developed Brazilian children.

Methods: It was a cross-sectional study. The 212 families, 212 caregivers and 131 siblings completed the Family Quality of Life Scale, Burden Interview, and KIDSCREEN-27 Child and Adolescent Version and Parents Version questionnaires at a neurorehabilitation center in southeast Brazil. Univariable and multivariable models were used.

Results: Family QoL significantly worsened as caregivers' burden increased (95 % CI -0.66 to -0.38). Caregivers' burden was significantly lower with increasing family QoL scores (95 % CI -0.52 to -0.30). Self-reported siblings' QoL was significantly worse than that of their typically developed peers (95 % CI -7.6 to -3.6). Self-reported siblings' QoL was significantly lower as siblings' age (95 % CI -2.52 to -0.59) and caregivers' burden (95 % CI -0.35 to -0.05) increased. Parent-reported siblings' QoL was significantly lower with increasing caregivers' burden (95 % CI -0.45 to -0.16) and higher as family QoL increased (95 % CI 0.09 to 0.37).

Conclusions: The cross-sectional nature of these data precludes any statement of causality. Family QoL worsened with higher caregivers' burden levels. Lower caregivers' burden scores were associated with a higher family QoL. Siblings' QoL was impaired as compared to typically developed peers, worse among older siblings, and as caregivers' burden increased and better with higher family QoL levels. Future multicenter studies may validate the generalizability of the present findings.

Keywords: Cerebral palsy; Family; Quality of life; Siblings.