AAC barriers and facilitators for children with Koolen de Vries syndrome and childhood apraxia of speech: parent perceptions

Abstract

Despite the potential positive impact of augmentative and alternative communication, the literature suggests that many individuals with disabilities experience barriers in developing communication skills and access to appropriate supports. Parents can provide valuable insight into the barriers and facilitators experienced by their children with complex communication needs. Previous studies exploring parent perspectives of the complex communication needs of children with various disabilities have revealed similarities and differences in experiences. This supports the need to examine the barriers and facilitators experienced by different populations, including individuals with Koolen de Vries syndrome (KdVS). As a newly identified syndrome, information on individuals with KdVS is limited, and studies examining parent experiences in supporting the communication needs of children with KdVS have not been conducted. This study obtained parents' perspectives regarding the communication barriers and facilitators experienced by their children with KdVS. Fifteen parents participated in one of two focus group sessions. The data were analyzed through qualitative content analysis, resulting in 13 categories discussed in relation to previous research and conceptual frameworks. Research and practical implications for developing a deeper understanding of the barriers experienced by children with KdVS are proposed.