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资源匮乏环境下孤独症谱系障碍儿童:蒙古家长的报告经验与需求。

Children with Autism Spectrum Disorders in Low-Resource Settings: Reported Experiences and Needs of Parents in Mongolia.

机构信息

Department of Special Education, University of Illinois at Urbana-Champaign, 1310 South 6th Street, Champaign, IL, 61820, USA.

出版信息

J Autism Dev Disord. 2021 Oct;51(10):3586-3599. doi: 10.1007/s10803-020-04818-4. Epub 2021 Jan 2.

Abstract

Although it is well-documented that families of children with autism in developed nations report hardships, few researchers have focused on families who live in less-developed, low-resource settings. Using five focus groups with 30 parents of children with autism in Mongolia, a low- resource setting, the purpose of this study was to provide detailed accounts of their experiences, challenges, and needs. Participants reported severe challenges related to raising their children with autism in their country. Parents shared barriers related to the limited availability of services and support, exacerbated financial burdens, and a lack of enforcement of relevant laws. Parents also shared their perceived needs including more services for their children, more sustainable training and coaching programs for parents, and parents' collective advocacy.

摘要

尽管有大量文献记载,发达国家自闭症儿童的家庭报告存在困难,但很少有研究关注生活在资源匮乏、欠发达地区的家庭。本研究采用 5 个焦点小组,对蒙古 30 名自闭症儿童的家长进行了研究,目的是详细描述他们的经历、挑战和需求。参与者报告说,在他们的国家抚养自闭症儿童面临严重挑战。家长们分享了与服务和支持有限、经济负担加重以及相关法律执行不力有关的障碍。家长们还分享了他们认为自己的需求,包括为孩子提供更多的服务、为家长提供更可持续的培训和指导计划,以及家长的集体倡导。

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