Hettiarachchi Shyamani, Nizar Shamra, Kitnasamy Gopi, Gopi Dilani
Department of Disability Studies, Faculty of Medicine, University of Kelaniya, Sri Lanka.
Cerebral Palsy Lanka Foundation, Sri Lanka.
Autism. 2025 May;29(5):1157-1170. doi: 10.1177/13623613241298061. Epub 2024 Nov 25.
From a critical disability rights lens, everyone has a right to communicate using any means available, which includes augmentative and alternative communication. The uptake of augmentative and alternative communication beyond the therapy room may be influenced by awareness, perceptions and acceptance of augmentative and alternative communication by caregivers, family members and the wider society. This study aimed to uncover parental perceptions of augmentative and alternative communication in a Global South context. Ten mothers and six fathers (16 participants) of children with complex communication needs were invited to be part of the study. A focus-group discussion and semi-structured interviews were undertaken using an interview guide. The participant data were analysed using Framework Analysis and through the lens of gender and critical disability theory. The key theme expressed was fear of augmentative and alternative communication deterring speech development. In addition, there was also concern that siblings might adopt the alternative communication method and stop talking. The participants questioned whether the visibility of a communication device could highlight their child's disability, thereby fearing societal stigma and negativity. Overall, parents' attitudes towards perspectives of and openness to use augmentative and alternative communication impact its uptake. The results suggest the need to consider the preparedness of parents prior to introducing augmentative and alternative communication and the need to offer on-going parental training.Lay abstractEverybody has a right to communicate in any way they can, which includes augmentative and alternative communication. The uptake of augmentative and alternative communication in everyday life may be influenced by awareness, perceptions and acceptance of augmentative and alternative communication by caregivers, family members and the wider society. This study aimed to uncover what parents thought about augmentative and alternative communication in a Global South context. Eleven mothers and five fathers (16 participants) of children with complex communication needs were included. Data were collected using an interview guide from a focus-group discussion and semi-structured interviews. The data were analysed using Framework Analysis and from a gender and critical disability theory viewpoint. The key theme found was fear of augmentative and alternative communication stopping the child from learning to speak. The parents wondered if siblings might also use the alternative communication method and stop talking. They worried whether the communication device will negatively highlight their child in society. As parents' views on augmentative and alternative communication influence whether they use it with their child, informing and preparing parents before introducing augmentative and alternative communication to a child and on-going parent training should be considered.
从批判性残疾权利的视角来看，每个人都有权使用任何可用的方式进行沟通，这包括辅助和替代沟通方式。在治疗室之外，辅助和替代沟通方式的采用可能会受到照顾者、家庭成员以及更广泛社会对其的认知、看法和接受程度的影响。本研究旨在揭示在全球南方背景下父母对辅助和替代沟通方式的看法。邀请了10位母亲和6位父亲（共16名参与者）参与研究，他们的孩子都有复杂的沟通需求。使用访谈指南进行了焦点小组讨论和半结构化访谈。通过框架分析并从性别和批判性残疾理论的角度对参与者的数据进行了分析。表达的关键主题是担心辅助和替代沟通方式会阻碍言语发展。此外，还担心兄弟姐妹可能会采用替代沟通方式并停止说话。参与者质疑沟通设备的可见性是否会凸显孩子的残疾，从而担心会受到社会的污名化和负面评价。总体而言，父母对辅助和替代沟通方式的看法以及使用的开放程度会影响其采用情况。结果表明，在引入辅助和替代沟通方式之前需要考虑父母的准备情况，并且需要持续为父母提供培训。
每个人都有权以任何方式进行沟通，这包括辅助和替代沟通方式。在日常生活中，辅助和替代沟通方式的采用可能会受到照顾者、家庭成员以及更广泛社会对其的认知、看法和接受程度的影响。本研究旨在揭示在全球南方背景下父母对辅助和替代沟通方式的看法。纳入了11位母亲和5位父亲（共16名参与者），他们的孩子都有复杂的沟通需求。使用访谈指南从焦点小组讨论和半结构化访谈中收集数据。通过框架分析并从性别和批判性残疾理论的角度对数据进行了分析。发现的关键主题是担心辅助和替代沟通方式会使孩子停止学习说话。父母们想知道兄弟姐妹是否也会使用替代沟通方式并停止说话。他们担心沟通设备是否会在社会上对孩子产生负面影响。由于父母对辅助和替代沟通方式的看法会影响他们是否与孩子使用这种方式，因此在向孩子引入辅助和替代沟通方式之前，应该告知并让父母做好准备，同时应考虑持续为父母提供培训。
