湖北省孤独症儿童就诊、康复服务的现况调查研究

A cross-sectional study on the status of treatment and rehabilitation services for autistic children in Hubei province

目的了解湖北省孤独症儿童就诊及康复机构现状,为孤独症儿童就诊及康复服务提供参考和建议。方法在湖北省东西南北中选取具有代表性的5个市区,并在这5个市区的孤独症康复机构进行整群随机抽样,共选中26个康复机构,将选中机构就诊的孤独症儿童作为研究对象,自行设计两份问卷向康复机构负责人和孤独症家长进行调查,收到有效问卷252份。结果患儿家长最先获取孤独症知识途径,医院就诊过程中了解的占74.20%。患儿第1次采取康复措施的平均年龄为3.25岁。患儿在康复期间就医总支出平均值是2741.87元。康复机构采用的干预方法中孤独症健康教育、言语训练等相对较多,在治疗中专项评估周期为3~6月的占65.40%。结论孤独症儿童家长对孤独症的知识及相关信息了解严重不足,应设立孤独症康复咨询机构,患儿每次接受干预时的花费较高,需比较完善的医疗保障体系和社会的支持,就诊机构的专业人员需要增加,机构的干预方法需要统一标准,康复机构需要缩短随访和专业评估周期。

Objective To understand the current situation of autistic children's consultation and rehabilitation institutions in Hubei province,and to provide references and suggestions for autistic children's consultation and rehabilitation services.Methods Five representative urban areas in the east,west,north and south of Hubei province were selected,and a whole-group random sampling of autism rehabilitation institutions in these five urban areas was conducted.26 rehabilitation institutions were selected,and children with autism attending the selected institutions were taken as the study subjects,and two self-designed questionnaires were administered to the heads of rehabilitation institutions and parents with autism,and 252 valid questionnaires were received.Results Parents of children with autism were the first to acquire knowledge about autism,with 74.20%learning about it during hospital visits.The average age of the first rehabilitation intervention for children with autism was 3.25 years.The average total expenditure on medical care for children with autism during rehabilitation was 2741.87 RMB.Among the intervention methods adopted by rehabilitation institutions,health education,parent training and speech training were relatively more.The percentage of those with a special assessment period of 3 to 6 months in treatment was 65.40%.Conclusion First,parents of children with autism are a serious lack of knowledge and information about autism,and an autism rehabilitation consultation agency should be established.Second,the cost of each intervention for children with autism is high,it needs a relatively perfect medical security system and social support.Third,rehabilitation institutions need to increase the number of relevant professionals,China needs to unify the intervention methods of standard institutions,and rehabilitation institutions need to shorten the follow-up and professional assessment period.