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春天尚未来临:在中国西南农村养育自闭症谱系障碍儿童。

Spring is not yet here: raising a child with ASD in rural southwest China.

机构信息

Department of Special Education, Yunnan Normal University, Kunming, People's Republic of China.

Faculty of Education, The University of Hong Kong, Hong Kong, Hong Kong.

出版信息

Disabil Rehabil. 2024 Jan;46(2):322-333. doi: 10.1080/09638288.2022.2161642. Epub 2022 Dec 27.

Abstract

PURPOSE

This study aims to reveal the parenting experiences of parents of children with autism spectrum disorder (ASD) in rural southwest China under the framework of ecological systems theory.

MATERIALS AND METHODS

Semi-structured interviews were conducted with 21 parents of children with ASD from rural southwest China and the interview data were analyzed using the three coding steps of the grounded theory method, namely open, axial, and selective coding.

RESULTS

The results showed four themes: challenges from within the family; relationships between parents, the school, and the community; scarcity and low accessibility of available resources and services; the culture of discriminating against people with disabilities and the loss of eligibility for welfare. The mismatch between the needs of families of children with ASD and the resources available in social-environmental systems is the major issue faced by parents.

CONCLUSIONS

Raising a child with ASD in rural southwest China is affected by the interactions between the families and the internal structures in different environmental systems. The culture of discriminating against people with disabilities formed in the macrosystem could be the essential factor that affects the smoothness of the parenting process of children with ASD.

摘要

目的

本研究旨在生态系统理论框架下揭示中国西南部农村地区自闭症谱系障碍(ASD)儿童父母的育儿经验。

材料与方法

对来自中国西南部农村地区的 21 名 ASD 儿童家长进行半结构式访谈,并采用扎根理论方法的三个编码步骤(开放式、轴向式和选择性编码)对访谈数据进行分析。

结果

结果显示出四个主题:家庭内部的挑战;父母、学校和社区之间的关系;现有资源和服务的稀缺性和低可及性;对残疾人的歧视文化和丧失福利资格。ASD 儿童家庭的需求与社会环境系统中可用资源之间的不匹配是父母面临的主要问题。

结论

在中国西南部农村养育 ASD 儿童受到家庭与不同环境系统内部结构相互作用的影响。宏系统中形成的残疾歧视文化可能是影响 ASD 儿童养育过程顺利进行的关键因素。

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