从匿名受试者到参与的利益相关者:丰富自闭症语言使用研究的参与者经验

G. Williams
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引用次数: 3

摘要

“一起说话”社区参与试点项目将自闭症和非自闭症的陌生人聚集在一起:(1)谈论他们在当地城市的孤独经历;(2)考虑潜在的、共同产生的对问题的反应。这个项目已经发展成为一个次要目标,从最初需要获得自然的对话数据,为我的语言学博士研究调查自闭症语言使用的理论重构“不同”而不是“缺陷”。让数据收集成为参与者自己有意义的体验的愿望是研究设计的核心,因此“一起谈论孤独”项目被设计为实现这一目标的一种方式。然而,直到研究开始,潜在的有价值的、直接的影响才显现出来。本文反思了“一起谈话”试点项目作为一项以自闭症患者为主导的参与性研究的成功和挑战,并探讨了如何应用参与性研究的原则,以最大限度地发挥影响,即使参与可能不是主要目标。它还探讨了参与性研究的“参与性”本质,其中研究者属于边缘化的利益相关者群体。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
From anonymous subject to engaged stakeholder: Enriching participant experience in autistic-language-use research
The Talking Together community-engagement pilot project brought together pairs of autistic and non-autistic strangers to: (1) talk about their experiences of loneliness in their local city; and (2) think about potential, co-produced responses to the problem. The project had evolved as a secondary aim, from an initial need to acquire naturalistic conversation data for my linguistic PhD research investigating a theoretical reframing of autistic language use as ‘different’ rather than ‘deficient’. The desire to make the data collection a meaningful experience for the participants in its own right was central to the research design, and so the Talking Together loneliness project was devised as a way to achieve this. However, it was not until the research was under way that the potential for valuable, immediate impact became apparent. This article reflects on the successes and challenges of the Talking Together pilot as a piece of autistic-led participatory research, and explores how the principles of engaged, participatory research can be applied so as to maximize impact, even where engagement may not be a primary aim. It also explores the ‘participatory’ nature of participatory research where the researcher belongs to the marginalized stakeholder group.
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