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INSAR 社区合作者请求:利用社区-学术伙伴关系提高参与性自闭症研究的成果。

The INSAR Community Collaborator Request: Using community-academic partnerships to enhance outcomes of participatory autism research.

机构信息

Macquarie University Hearing, Department of Linguistics, Faculty of Medicine, Health and Human Sciences, Macquarie University, Sydney, New South Wales, Australia.

Reframing Autism, St Leonards, New South Wales, Australia.

出版信息

Autism Res. 2023 Nov;16(11):2071-2076. doi: 10.1002/aur.3027. Epub 2023 Sep 9.

Abstract

Participatory approaches, in which researchers work together with members of the autism community (e.g., autistic people, family members, caregivers, or other stakeholders) to design, conduct, and disseminate research, have become increasingly prominent within the field of autism research over the past decade. Despite growing academic and community interest in conducting participatory studies, stakeholder collaboration remains infrequent in autism research, at least partially due to systemic barriers. To help reduce barriers to engaging in participatory autism research, the International Society for Autism Research (INSAR) Autistic Researchers Committee has launched the INSAR Community Collaborator Request (ICCR; https://www.autism-insar.org/page/iccr), a platform on the INSAR website that allows autism researchers conducting participatory research to seek out stakeholder collaborators from the autism community (including both autistic people and their family members/caregivers, as relevant to a given research project). Interested stakeholders also have the opportunity to subscribe to ICCR posts, allowing them to be alerted of new opportunities for collaboration and potentially increasing their involvement in autism research. Overall, the ICCR provides a venue to connect autism researchers with potential community collaborators, reducing barriers to participatory autism research and increasing the frequency of successful community-academic partnerships within the field. We are hopeful that in the long term, such changes will lead to greater alignment between research outputs and the goals of the greater autism community, and consequently an increase in the overall quality and relevance of autism research.

摘要

参与式方法是指研究人员与自闭症社群成员(例如自闭症患者、家庭成员、照顾者或其他利益相关者)合作,共同设计、实施和传播研究成果。在过去十年中,这种方法在自闭症研究领域变得越来越重要。尽管学术界和自闭症社群越来越有兴趣开展参与式研究,但在自闭症研究中,利益相关者的合作仍然很少见,这至少部分是由于系统障碍造成的。为了帮助减少参与参与式自闭症研究的障碍,国际自闭症研究协会(INSAR)自闭症研究人员委员会推出了 INSAR 社区合作者请求(ICCR;https://www.autism-insar.org/page/iccr),这是 INSAR 网站上的一个平台,允许进行参与式研究的自闭症研究人员从自闭症社群中寻找利益相关者合作者(包括自闭症患者及其家庭成员/照顾者,具体取决于特定的研究项目)。有兴趣的利益相关者也有机会订阅 ICCR 帖子,使他们能够收到新的合作机会的提醒,并有可能增加他们对自闭症研究的参与度。总体而言,ICCR 为自闭症研究人员与潜在的社区合作者提供了一个联系的场所,减少了参与式自闭症研究的障碍,并增加了该领域社区-学术伙伴关系的成功频率。我们希望从长远来看,这种变化将导致研究成果与更广泛的自闭症社群目标更加一致,从而提高自闭症研究的整体质量和相关性。

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