孤独症谱系障碍患儿家庭照顾负担及影响因素分析  

Caregiver burden and risk factors among children with autism spectrum disorder

作　　者：饶颖婷 钟美龄 夏玉雯 马一迪 张耀云 董妍君 张依航[5] 刘顺恺 吴美琦 贾美香 王晓莉[3] 方海[4] 张亚黎 李智文[1,2] 张乐[1,2] RAO Yingting;ZHONG Meiling;XIA Yuwen;MA Yidi;ZHANG Yaoyun;DONG Yanjun;ZHANG Yihang;LIU Shunkai;WU Meiqi;JIA Meixiang;WANG Xiaoli;FANG Hai;ZHANG Yali;LI Zhiwen;ZHANG Le(Department of Epidemiology and Biostatistics,School of Public Health,Peking University,Institute of Reproductive and Child Health,Peking University,Beijing 100191,China;不详)

机构地区：[1]北京大学公共卫生学院流行病与卫生统计学系,100191 [2]北京大学生育健康研究所,国家卫生健康委员会生育健康重点实验室 [3]北京大学公共卫生学院妇幼卫生学系 [4]北京大学中国卫生发展研究中心 [5]北京大学公共卫生学院儿童青少年卫生研究所 [6]北大医疗脑健康行为发展教研院 [7]北京大学第六医院儿童精神科,北京大学精神卫生研究所,国家卫生健康委员会精神卫生学重点实验室(北京大学),国家精神心理疾病临床医学研究中心(北京大学第六医院)

出　　处：《中国生育健康杂志》2024年第6期501-508,共8页Chinese Journal of Reproductive Health

基　　金：新生育政策下儿童生长发育追踪研究(十四五重大专项,2022YFC2705305)。

摘　　要：目的调查孤独症谱系障碍(ASD)患儿家庭的照顾负担现状,并探究其可能的影响因素,为有关部门制定干预措施提供参考依据。方法采用横断面调查法,于2022年12月16日~2023年02月20日在ASD家长社群及ASD康复中心发放电子问卷,对ASD患儿及其家庭的一般情况以及家长的照顾负担水平进行调查,调查共发放孤独症谱系障碍患儿家长问卷141例,回收有效答卷114例。选用中文版Zarit护理负担量表(ZBI)评估ASD患儿照顾者的照顾负担,根据量表总得分划分为无或极轻度负担(0~20分)、轻度负担(21~39分)、中度负担(40~59分)和重度负担(60分及以上)。使用逐步筛选法进行多重线性回归分析影响因素。结果ASD患儿家长的照顾负担总分为(52.8±12.0)分。轻度、中度和重度负担分别有15例(13.2%),64例(56.1%)和35例(30.7%)。家庭结构、家长的社会支持水平、是否因照顾患儿而误工以及是否收到儿童康复救助补贴为照顾负担的影响因素(R^(2)=0.373,F=4.957)。结论大多数ASD患儿家庭面临着中度至重度的照顾负担,应提高治疗和康复服务的可及性和可获得性,并为ASD患儿照顾者提供心理、社会和经济支持,以缓冲照顾负担。Objective To investigate the current situation and possible risk factors of caregiver burden of children with autism spectrum disorder(ASD)in China,and provide reference for relevant departments to formulate intervention measures.Methods A cross-sectional study was carried out in the parent communities and rehabilitation centers for ASD children from December 16th,2022 to February 20th,2023.A total of 141 caregivers were surveyed,and 114 valid questionnaires were collected.The Chinese version of the Zarit Burden Interview(ZBI)was used to evaluate the caregiver burden among children with ASD.They were divided into no or very light burden(0~20 points),mild burden(21~39 points),moderate burden(40~59 points)and severe burden(60 points and above)according to the total scale score.Multiple linear regression was used to analyze the risk factors with stepwise method.Results The ZBI total score of caregiver burden among children with ASD was(52.8±12.0).15 cases(13.2%)were of mild burden,64 cases(56.1%)were of moderate burden,and 35 cases(30.7%)were of severe burden.Family structure,parents′social support level,delaying work and whether receiving disability subsidies are the influencing factors of the caregiver burden(R^(2)=0.373,F=4.957).Conclusion Caregiver burden generally exists in the families of children with ASD,and most families face moderate to severe care burden.Our findings highlight the importance of improving the accessibility and availability of treatment and rehabilitation services,and providing psychological,social and economic support for caregivers of children with ASD.

关 键 词：孤独症谱系障碍 照顾负担 影响因素 

分 类 号：R17[医药卫生—妇幼卫生保健]