Lestari Ade Febrina, Sitaresmi Mei Neni, Sutomo Retno, Ridhayani Firda
Doctor, Academic Hospital Universitas Gadjah Mada, Yogyakarta, Indonesia.
Lecturer, Faculty of Medicine, Public Health and Nursing, Universitas Gadjah Mada, Yogyakarta, Indonesia.
Child Health Nurs Res. 2024 Jan;30(1):7-16. doi: 10.4094/chnr.2023.027. Epub 2024 Jan 31.
Children with cerebral palsy (CP) and their parents experience various problems that can affect their quality of life. This study examined factors affecting the quality of life of children with CP.
A cross-sectional study was conducted in Yogyakarta, Indonesia, from January to August 2019. The participants were consecutively recruited children with CP aged 2 to 18 years and their parents. Ninety-eight children with CP and their parents, specifically their mothers, were recruited. Children's health-related quality of life (HRQoL) was measured using the Pediatrics Quality of Life Cerebral Palsy. Parental HRQoL and stress were measured using the WHOQOL-BREF and Parenting Stress Index (PSI).
Functional level V was the most common category for both Gross Motor Function Classification System (GMFCS) and Bimanual Fine Motor Function (BFMF) (35% and 28%, respectively). Children's mean HRQoL was medium (49.81±20.35). The mean total PSI score was high (94.93±17.02), and 64% of parents experienced severe stress. Bivariate analysis showed that GMFCS, BFMF, number of comorbidities, presence of pain, and parental stress were significantly correlated with the total score for children's HRQoL (p<.05). Multiple linear regression analysis (p<.05) demonstrated that more severe GMFCS and parental stress were associated with lower mean HRQoL scores in children.
Factors including the level of GMFCS and parental stress affected the HRQoL of children with CP. Parental stress management should be included in the comprehensive management of these children.
脑瘫（CP）患儿及其父母会经历各种影响其生活质量的问题。本研究探讨了影响脑瘫患儿生活质量的因素。
2019年1月至8月在印度尼西亚日惹进行了一项横断面研究。连续招募2至18岁的脑瘫患儿及其父母。招募了98名脑瘫患儿及其父母，特别是他们的母亲。使用儿童脑瘫生活质量量表测量儿童的健康相关生活质量（HRQoL）。使用世界卫生组织生活质量简表（WHOQOL-BREF）和育儿压力指数（PSI）测量父母的HRQoL和压力。
对于粗大运动功能分类系统（GMFCS）和双手精细运动功能（BFMF），功能水平V是最常见的类别（分别为35%和28%）。儿童的平均HRQoL为中等（49.81±20.35）。PSI总分平均较高（94.93±17.02），64%的父母经历严重压力。双变量分析显示，GMFCS、BFMF、合并症数量、疼痛的存在以及父母压力与儿童HRQoL总分显著相关（p<0.05）。多元线性回归分析（p<0.05）表明，更严重的GMFCS和父母压力与儿童较低的平均HRQoL得分相关。
包括GMFCS水平和父母压力在内的因素影响了脑瘫患儿的HRQoL。对这些患儿的综合管理应包括父母压力管理。
