"People think if you can’t talk, you don’t understand”: A qualitative insight into the factors underlying the communication experience of parents of children with Down's syndrome

As a mother of twins with Down’s syndrome and MSc student in augmentative and alternative communication (AAC), I am currently exploring the factors underlying the communication experience of parents of children with Down’s syndrome. A qualitative approach was selected to give parents the opportunity to openly share their insights regarding their experience of communicating with their child. One-to-one semi-structured interviews were conducted with 13 parents (7 mothers, 6 fathers; mean child age = 6.9 years) and thematic analysis is currently being used to identify common themes across the data. Whilst still a work in progress, several issues were reported by most parents - 1) speech and language provision and support, 2) AAC provision and support (all used signing) and 3) public awareness of communication challenges. Combined, the issues are resulting in some children currently not reaching their verbal potential due to lack of service provision but also being restricted as to who they can independently communicate with due to dependency on a communication partner having signing ability. As such, the effectiveness of using signing as a sole form of AAC is called into question.