对非语言自闭症患者进行研究:一种包容性的方法方法

IF 0.2 Q4 SOCIAL ISSUES Journal of Social Inclusion Pub Date : 2020-08-10 DOI:10.36251/josi.162
K. Hills, J. Clapton, P. Dorsett, Kirsty Andersen
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引用次数: 0

摘要

目前的学术文献中,关于重度(非语言)自闭症患者自身视角的信息缺乏。大多数关于这一人群的研究都是从父母或照顾者等二手来源获得数据的。本文描述了一项探讨非语言自闭症患者灵性的研究方法。这项研究是有意为非语言自闭症患者设计的,而不是对他们进行研究。因此,为他们提供了作为直接答复者参与研究过程的机会。该研究探索了使用访谈作为从非语言自闭症参与者那里获取数据的策略。结合参与者个人叙述的拼凑方法为不使用口语进行交流的人提供了一种包容性的方法。由于与这些人交流需要使用某种辅助设备,因此采取了某些策略来解决研究过程中面临的具体实践、方法和伦理挑战。访谈产生了丰富的数据来源,为研究严重不足的人群的生活经验提供了独特的见解。这项研究表明,通过研究人员的灵活性,一种为参与者提供有意义和包容性参与的方法不仅是可能的,而且有利于更多地了解这个边缘化群体。此外,本文还介绍了一种方法方法,为进一步研究不通过语言交流的人提供了一个平台。
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Conducting Research with People with Nonverbal Autism: An Inclusive Methodological Approach
Abstract Current academic literature exposes a paucity of information about people with severe (nonverbal) autism from their own perspective. Most research pertaining to this population has obtained data from a secondary source such as a parent or caregiver. This paper describes the methodological approach to a study exploring the spirituality of people with nonverbal autism. The study was intentionally designed to work inclusively with people with nonverbal autism, rather than conducting research on or about them. As such, opportunity was provided for them to participate as direct respondents in the research process. The study explored the use of interview as a strategy for sourcing data from participants with nonverbal autism. A bricolage approach incorporating participant’s personal narratives provided an inclusive method for working with people who do not use spoken language to communicate. As communicating with this population necessitates the use of some type of augmentative device, certain strategies were adopted to address the particular practical, methodological and ethical challenges confronted during the research process. Interviews resulted in a rich source of data, providing unique insights into the lived experience of a severely under researched population. This study demonstrated that with researcher flexibility, a methodology that provides participants meaningful and inclusive involvement is not only possible, but beneficial in learning more about this marginalised group. Furthermore, this paper introduces a methodological approach that provides a platform for further research concerning people who do not communicate by speech.
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CiteScore
0.50
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0.00%
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审稿时长
21 weeks
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