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增强利益相关者在美国自闭症早期干预中的作用:一个由利益相关者驱动的研究议程。

Enhancing stakeholder roles in autism early interventions in the United States: A stakeholder-driven research agenda.

机构信息

The Ohio State University, USA.

University of South Carolina, USA.

出版信息

Autism. 2024 May;28(5):1120-1134. doi: 10.1177/13623613231195743. Epub 2023 Sep 7.

Abstract

In this article, we outline a stakeholder-driven research agenda to guide future early intervention research for children with autism. Our research team collaborated with autism service providers, parents of individuals with autism, and autistic people to create this research agenda by (1) conducting workshops with community members and (2) distributing a survey to a larger number of community members around the country. The finalized research agenda includes (1) Guiding Principles for current and future research, (2) Research Priorities focused on early intervention for individuals with autism, and (3) Systems Implications to consider in future clinical, research, and policy efforts for early intervention. The full version of the research agenda is available in Supplemental Material. This article lists the main points of the research agenda and discusses unique themes highlighted by the community members. One main conclusion is that researchers need to include community members in decision-making and consultant positions throughout the research process to best meet the needs of the broader autism community. We have created a researcher workbook which we hope may facilitate these community consultation efforts. This workbook is available in Supplemental Material.

摘要

在本文中,我们概述了一个由利益相关者驱动的研究议程,以指导未来针对自闭症儿童的早期干预研究。我们的研究团队与自闭症服务提供者、自闭症患者的家长以及自闭症患者合作,通过以下两种方式制定了这项研究议程:(1)与社区成员进行研讨会,(2)向全国范围内更多的社区成员分发调查。最终确定的研究议程包括:(1) 当前和未来研究的指导原则,(2) 专注于自闭症个体早期干预的研究重点,以及 (3) 未来临床、研究和政策努力中需要考虑的系统影响。研究议程的完整版本可在补充材料中找到。本文列出了研究议程的要点,并讨论了社区成员强调的独特主题。一个主要结论是,研究人员需要在整个研究过程中让社区成员参与决策和顾问职位,以最好地满足更广泛的自闭症社区的需求。我们已经创建了一个研究人员工作手册,希望可以促进这些社区咨询工作。该工作手册可在补充材料中找到。

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