脑瘫患儿照顾者照顾负担与生活质量的调查分析  

Investigation and analysis of care burden and quality of life of caregivers of children with cerebral palsy

作　　者：周俭芳 朱晶晶 黄华玉[3] 陈艳 江丽娟[4] ZHOU Jianfang;ZHU Jingjing;HUANG Huayu;CHEN Yan;JIANG Lijuan(General Practice Department of Huajing Community Health Service Center of Xuhui District,Shanghai 200231,China;Administrative Office of Huajing Community Health Service Center of Xuhui District,Shanghai 200231,China;Rehabilitation Department of Huajing Community Health Service Center of Xuhui District,Shanghai 200231,China;Rehabilitation Department of Jiangchuan Community Health Service Center of Minhang District,Shanghai 200240,China)

机构地区：[1]上海市徐汇区华泾镇社区卫生服务中心全科,上海200231 [2]上海市徐汇区华泾镇社区卫生服务中心院办,上海200231 [3]上海市徐汇区华泾镇社区卫生服务中心康复科,上海200231 [4]上海市闵行区江川社区卫生服务中心康复科,上海200240

出　　处：《上海医药》2022年第4期12-15,共4页Shanghai Medical & Pharmaceutical Journal

基　　金：2019年度上海市徐汇区医学科研项目(SHXH201927)。

摘　　要：目的:分析了解脑性瘫痪儿童照顾者的照顾负担和生活质量情况,为制定相关干预措施提供依据。方法:于2020年12月采用立意抽样方法选取在上海市徐汇区华泾镇社区卫生服务中心和闵行区江川社区卫生服务中心接受康复训练的56例脑性瘫痪儿童照顾者作为研究对象进行问卷调查,问卷内容包括一般情况、Zarit照顾者负担量表和SF-36生活质量量表,共发放问卷56份,回收有效问卷56份,问卷有效回收率100.0%。结果:本次研究对象的Zarit照顾者负担量表平均得分为(34.43±13.87)分,呈轻度照顾负担水平。56名照顾者中,男性、女性的Zarit照顾者负担量表平均得分分别为(30.73±16.33)分、(35.33±13.26)分。本次研究对象的SF-36生活质量量表分析结果显示,56名照顾者平均得分较高的几个维度分别为生理功能、社会功能和躯体疼痛。结论:脑性瘫痪儿童往往需要长期甚至终生的照顾,其照顾者照顾负担沉重,应通过各种途径关注照顾者的照顾负担及生活质量问题,缓解他们的压力和负担,提升其生活质量水平。Objective:To analyze and understand the care burden and quality of life of caregivers of children with cerebral palsy,and to provide basis for formulating relevant intervention measures.Methods:In December 2020,56 caregivers of children with cerebral palsy who received rehabilitation training in Huajing Community Health Service Center of Xuhui District and Jiangchuan Community Health Service Center of Minhang District of Shanghai were selected as the research objects for questionnaire survey,the questionnaire included general information,the Zarit caregiver burden scale and SF-36 quality of life scale,a total of 56 questionnaires were distributed,56 valid questionnaires were recovered,and an effective recovery rate was 100.0%.Results:The average score of the Zarit caregiver burden scale for the research objects was(34.43±13.87)points,showing a light caregiving burden level.Among the 56 caregivers,the average scores of the Zarit caregiver burden scale for males and females were(30.73±16.33)points and(35.33±13.26)points,respectively.The results of the SF-36 quality of life scale analysis of the research objects in this study showed that the dimensions with higher average scores for 56 caregivers were physiological function,social function,and physical pain.Conclusion:Children with cerebral palsy often need long-term or even life-long care,and their caregivers are burdened with heavy care,and attention should be paid to the care burden and quality of life of caregivers through various ways to alleviate their pressure and burden and improve their quality of life.

关 键 词：脑性瘫痪 照顾者 照顾负担 生活质量 

分 类 号：R742.3[医药卫生—神经病学与精神病学]