比较和对比不说话自闭症患者和有复杂交流需求者在使用辅助替代性交流手段时遇到的障碍:多方利益相关者的观点

Shu H. Yau, Kaylynn Choo, Jane Tan, Olivia Monson, Stephanie Bovell
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引用次数: 0

摘要

辅助性替代交流(AAC)设备或系统经常被用在极少说话或不说话的自闭症患者和其他有复杂交流需求的患者身上,以促进交流或替代口语。使用辅助交流设备可使极少言语或不言语的人提高交流能力,改善生活质量。尽管如此,自闭症谱系中具有复杂交流需求的个体放弃使用辅助交流设备的比例很高,这限制了他们参与社会活动。我们的研究从多方利益相关者的角度出发,对使用辅助交流设备的障碍进行了新颖的探索,并对利益相关者之间的异同进行了定性分析。我们对目前在西澳大利亚州为自闭症儿童辅助器具使用者提供支持的 30 名家长护理人员、教育工作者和临床医生进行了半结构化访谈和焦点小组讨论,并使用反思性主题分析法对数据进行了分析。对来自各利益相关者群体的障碍进行了编码,得出了 17 个子主题,形成了所有利益相关者共有的五大主题:利益相关者的知识、利益相关者的态度和成见、资源、AAC 用户参与和设备匹配。截然不同的观点包括与使用 AAC 相关的实际和感知到的耻辱感(家长照护者与临床医生);在资源和知识方面的不同努力(家长照护者与临床医生和教育工作者);以及临床医生在确定 AAC 是否适合学校环境的过程中缺乏沟通(仅教育工作者)。研究结果将在改善澳大利亚医疗服务和实践中利益相关者之间的合作和能力建设的背景下进行讨论,以更好地支持极少言语或不言语的自闭症患者和有复杂交流需求的患者。此外,还对交流伙伴培训提出了建议。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Comparing and contrasting barriers in augmentative alternative communication use in nonspeaking autism and complex communication needs: multi-stakeholder perspectives
Augmentative alternative communication (AAC) devices or systems are often prescribed to minimally verbal or nonspeaking autistic individuals and other individuals with complex communication needs to facilitate communication or as an alternative to spoken language. AAC use can result in communication gains and improved quality of life for minimally verbal or nonspeaking individuals. Despite this, AAC abandonment is high, limiting societal participation of the individual on the autism spectrum with complex communication needs. Our study is a novel exploration of the barriers of AAC use from a multi-stakeholder perspective, and a qualitative analysis of similarities and differences between stakeholders. We conducted semi-structured interviews and focus groups with 30 parent-carers, educators and clinicians currently supporting AAC users in Western Australia and analysed the data using reflexive thematic analysis. Barriers from each stakeholder group were coded, resulting in 17 subthemes forming five main themes common to all stakeholders: Stakeholder Knowledge, Stakeholder Attitudes and Stigma, Resources, AAC User Engagement, and Device Fit. Contrasting perspectives included actual and perceived stigma associated with AAC use (parent-carers vs clinicians); different struggles with resources and knowledge (parent-carers vs clinicians and educators); and a lack of clinician communication in the processes that determined AAC-fit for school environments (educators only). Findings are discussed in the context of improving inter-stakeholder collaboration and capacity building in Australian health service and practice to better support minimally verbal or nonspeaking autistic individuals and individuals with complex communication needs. Suggestions are also offered for communication partner training.
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