Yau Shu H, Choo Kaylynn, Tan Jane, Monson Olivia, Bovell Stephanie
School of Psychology, Murdoch University, Perth, WA, Australia.
School of Education, University of Bristol, Bristol, United Kingdom.
Front Psychiatry. 2024 Jun 10;15:1385947. doi: 10.3389/fpsyt.2024.1385947. eCollection 2024.
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.
辅助替代性沟通(AAC)设备或系统通常被开给极少说话或不说话的自闭症患者以及其他有复杂沟通需求的个体,以促进沟通或作为口语的替代方式。使用AAC可以为极少说话或不说话的个体带来沟通改善和生活质量提高。尽管如此,AAC的弃用率很高,限制了有复杂沟通需求的自闭症谱系个体的社会参与。我们的研究是从多利益相关者的角度对AAC使用障碍进行的全新探索,也是对利益相关者之间异同的定性分析。我们对西澳大利亚州目前支持AAC使用者的30名家长照顾者、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对数据进行了分析。对每个利益相关者群体的障碍进行了编码,形成了17个子主题,构成了所有利益相关者共有的五个主要主题:利益相关者知识、利益相关者态度与污名、资源、AAC用户参与度以及设备适配性。不同的观点包括与使用AAC相关的实际污名和感知污名(家长照顾者与临床医生);在资源和知识方面的不同困难(家长照顾者与临床医生和教育工作者);以及在确定学校环境中AAC适配性的过程中临床医生缺乏沟通(仅涉及教育工作者)。研究结果在改善澳大利亚医疗服务和实践中的利益相关者间协作与能力建设的背景下进行了讨论,以更好地支持极少说话或不说话的自闭症个体以及有复杂沟通需求的个体。还为沟通伙伴培训提供了建议。