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自闭症社群的研究重点:关键利益相关者观点的系统综述。

Research priorities of the autism community: A systematic review of key stakeholder perspectives.

机构信息

Griffith University, Australia.

出版信息

Autism. 2021 Feb;25(2):336-348. doi: 10.1177/1362361320967790. Epub 2020 Nov 3.

Abstract

It has become very important in autism research to ask the autistic community about what kinds of research they think should be done in order to improve the lives of people with autism. Many studies have reported on research goals from people within the autism community, such as parents of people on the autism spectrum, and practitioners and clinicians who support people on the autism spectrum. So far, the research goals from all of these studies have not been considered together, which is important so that all autism research can be working towards the same goals. We reviewed seven studies that looked at the priorities for autism research from key people within the autism community. Each of the reviewed studies are described according to (a) the types of people involved in the study, (b) the way the research goals from each group of people were identified, (c) the country where they were from and (d) the most common research goals from across all of the studies. Within these seven studies, research that will lead to real-world changes in the daily lives of the autism community and a greater focus on skill training for people with autism across their lives were found to be very important. From this review, we found that it is also very important to include a range of different people from the autism community when deciding what autism research goals should be focused on so that future research can be more helpful for the autism community.

摘要

在自闭症研究中,询问自闭症群体他们认为应该进行哪些研究来改善自闭症患者的生活变得非常重要。许多研究报告了自闭症群体中的人的研究目标,例如自闭症谱系人士的父母,以及支持自闭症谱系人士的从业者和临床医生。到目前为止,所有这些研究的研究目标都没有被放在一起考虑,这一点很重要,这样所有的自闭症研究都可以朝着相同的目标努力。我们回顾了七项研究,这些研究着眼于自闭症群体中的关键人物的自闭症研究重点。根据(a)参与研究的人员类型、(b)确定每个群体的研究目标的方式、(c)研究来自哪个国家以及(d)所有研究中最常见的研究目标,对每项研究进行了描述。在这七项研究中,发现能够引领自闭症群体日常生活中的实际变化,以及更加关注自闭症人士一生的技能培训的研究非常重要。通过这项综述,我们发现,在决定自闭症研究重点时,让自闭症群体的各种不同人群参与进来也非常重要,这样未来的研究才能对自闭症群体更有帮助。

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