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.
Universidade do Estado do Rio de Janeiro (UERJ), Faculdade de Ciências Médicas, Departamento de Pediatria, Rio de Janeiro, RJ, Brazil.
J Pediatr (Rio J). 2024 Sep-Oct;100(5):519-526. doi: 10.1016/j.jped.2024.03.010. Epub 2024 Apr 22.
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.
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.
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).
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.
调查巴西脑瘫患儿家庭中照顾者负担、家庭生活质量（QoL）和兄弟姐妹 QoL 之间的关联，并使用巴西典型发展儿童的 QoL 作为参数分析兄弟姐妹的 QoL。
这是一项横断面研究。在巴西东南部的一家神经康复中心，212 个家庭、212 名照顾者和 131 名兄弟姐妹完成了家庭生活质量量表、负担访谈以及 KIDSCREEN-27 儿童和青少年版和父母版问卷。使用单变量和多变量模型。
随着照顾者负担的增加，家庭 QoL 显著恶化（95 % CI -0.66 至 -0.38）。随着家庭 QoL 评分的增加，照顾者的负担显著降低（95 % CI -0.52 至 -0.30）。自我报告的兄弟姐妹 QoL 明显差于他们典型发展的同龄人（95 % CI -7.6 至 -3.6）。随着兄弟姐妹年龄的增加（95 % CI -2.52 至 -0.59）和照顾者负担的增加（95 % CI -0.35 至 -0.05），自我报告的兄弟姐妹 QoL 显著降低。随着照顾者负担的增加（95 % CI -0.45 至 -0.16）和家庭 QoL 的增加（95 % CI 0.09 至 0.37），父母报告的兄弟姐妹 QoL 显著降低。
这些数据的横断面性质排除了任何因果关系的说法。家庭 QoL 随着照顾者负担水平的升高而恶化。照顾者负担得分越低，家庭 QoL 越高。与典型发展的同龄人相比，兄弟姐妹的 QoL 受损，年龄较大的兄弟姐妹更差，随着照顾者负担的增加和家庭 QoL 水平的提高而改善。未来的多中心研究可能会验证本研究结果的普遍性。
