Making the future together: Shaping autism research through meaningful participation.
Making the future together: Shaping autism research through meaningful participation.
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共同使未来：通过有意义的参与来塑造自闭症研究。
DOI：
10.1177/1362361318786721
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发表时间：
2019-05
期刊：
影响因子：
--
通讯作者：
Pellicano E
中科院分区：
文献类型：
--
作者：
Fletcher-Watson S;Adams J;Brook K;Charman T;Crane L;Cusack J;Leekam S;Milton D;Parr JR;Pellicano E
参与式研究方法将研究人员与相关社区联系起来，以实现共同的目标。这些方法可以产生与人们生活相关的结果，因此可能产生积极影响。在自闭症研究的大量和不断增长的背景下，由于持续的糟糕实施，以及一些社区不满的证据，有一个强有力的案例来参与自闭症研究。为了开发这种协作工作的框架，英国组织了一系列研讨会，并由具有学术、从业者和生活专业知识的自闭症患者和非自闭症患者共同制作。这篇文章报道了该系列的成果，确定了与建立参与性研究实践社区相关的五个主题：尊重、真实性、假设、基础设施和同理心。每个主题都与研究内外的一个具体例子联系在一起，以启发该领域的新实践。我们呼吁在自闭症研究界发展参与性研究技能，并促进自闭症研究的更大领导和伙伴关系。这样的工作，如果以高标准进行，可能会导致更好地转化为实践，并改善自闭症患者和支持他们的人的结果。
Participatory research methods connect researchers with relevant communities to achieve shared goals. These methods can deliver results that are relevant to people’s lives and thus likely to have a positive impact. In the context of a large and growing body of autism research, with continued poor implementation, and some evidence of community dissatisfaction, there is a powerful case for participatory autism research. In order to develop a framework for such collaborative working, a UK seminar series was organised and co-produced by autistic and non-autistic people with academic, practitioner and lived expertise. This article reports on the outcomes from the series, identifying five topics relevant to building a community of practice in participatory research: Respect, Authenticity, Assumptions, Infrastructure and Empathy. Each topic is connected to a specific example from within and beyond research, to inspire new practices in the field. We call for the development of participatory research skills among the autism research community and the facilitation of greater autistic leadership of, and partnership in, research. Such work, if delivered to a high standard, is likely to lead to better translation into practice and improved outcomes for autistic people and those who support them.
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