Parental expectations and perceptions of augmentative and alternative communication: A Sri Lankan perspective.

Abstract

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.