脑瘫患儿父母的照料者体验水平及其相关因素：中国西南地区的一项横断面研究

The level and factors associated with caregiver experience among parents of children with cerebral palsy: a cross-sectional study in Southwest China.

作者信息

Zhong Xiaoying, Wijesinghe Champa J

机构信息

Department of Nursing, West China Second Hospital, Sichuan University/Key Laboratory of Birth Defects and Related Diseases of Women and Children (Sichuan University), Ministry of Education, Chengdu, Sichuan, China.

Department of Community Medicine, Faculty of Medicine, University of Ruhuna, Matara, Sri Lanka.

出版信息

Front Public Health. 2025 Sep 1;13:1482011. doi: 10.3389/fpubh.2025.1482011. eCollection 2025.

DOI:10.3389/fpubh.2025.1482011

PMID:40959617

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12434044/

Abstract

BACKGROUND

Disability is a global public health issue, affecting one in seven people worldwide. In China, there are about 5 million children under 14 years of age with cerebral palsy and about 40,000 new individuals occur every year. Previous studies have revealed that the caregivers of children with cerebral palsy were more likely to perceive a greater burden compared with caregivers of typically developing children. However, there is a lack of information available on the care burden experienced by parents of children with cerebral palsy in China.

OBJECTIVES

This study was conducted to determine the level of care burden and its related factors in the parents of children with cerebral palsy.

METHODS

This descriptive cross-sectional study was conducted with parents of 165 children with cerebral palsy who were enrolled in children rehabilitation departments of three tertiary hospitals between September 2021 and December 2022. Besides demographic information, the Caregiver Burden Inventory, the Patient Health Questionaire-9, and the Fatigue Severity Scale were used to collect data. Data were analyzed by descriptive and inferential statistics (correlation and multiple linear regression analysis).

RESULTS

The mean (±SD) Caregiver Burden Inventory score of the parents was 42.18 ± 18.79. The score of Fatigue Severity Scale and Patient Health Questionaire-9 demonstrated positive moderate to strong correlations with caregiver burden ( = 0.461,  < 0.001;  = 0.630,  < 0.001, respectively). The results of the multiple linear regression analysis showed that a low level of education, long caring time combined with visual impairment, higher depression, and fatigue had an influence on caregiver burden, and 46.4% of the variance in caregiver burden was explained by these factors.

DISCUSSION

The key predictors of caregiver burden include the level of education, caring time, children with visual impairment, and the degree of depression and fatigue. Efforts should be made to relieve the burden on parents of children with cerebral palsy.

摘要

背景

残疾是一个全球性的公共卫生问题，影响着全球七分之一的人口。在中国，约有500万14岁以下的脑瘫儿童，且每年新增约4万人。先前的研究表明，与发育正常儿童的照料者相比，脑瘫儿童的照料者更有可能感受到更大的负担。然而，关于中国脑瘫儿童家长所经历的照料负担，目前缺乏相关信息。

目的

本研究旨在确定脑瘫儿童家长的照料负担水平及其相关因素。

方法

本描述性横断面研究纳入了2021年9月至2022年12月期间在三家三级医院儿童康复科就诊的165名脑瘫儿童的家长。除人口统计学信息外，还使用照料者负担量表、患者健康问卷-9和疲劳严重程度量表收集数据。采用描述性和推断性统计方法（相关性和多元线性回归分析）对数据进行分析。

结果

家长照料者负担量表的平均（±标准差）得分为42.18±18.79。疲劳严重程度量表和患者健康问卷-9的得分与照料者负担呈中度到高度正相关（分别为r = 0.461，P < 0.001；r = 0.630，P < 0.001）。多元线性回归分析结果显示，低教育水平、长时间照料合并视力障碍、较高的抑郁和疲劳程度会影响照料者负担，这些因素解释了照料者负担46.4%的变异。