‘Communication is everything I think.’ Parenting a child who needs Augmentative and Alternative Communication (AAC)

Abstract

Anecdotal and research evidence suggests that professionals may not fully understand the perspectives of families of children who need or use Augmentative and Alternative Communication (AAC). This may impact on the provision of appropriate services. The aim was to explore the lived experience of parents of children in Britain who used AAC, with particular emphasis on the ways in which children's need for and use of AAC impacts on family life and communication. The parents/carers of 11 children aged 3-10 years, who lived in Britain and who were in the early stages of using AAC, were recruited to take part in the study. Individual semi-structured interviews were carried out in order to access rich descriptions of parents' experiences and views about having children who need to use AAC. The interviews were recorded, transcribed verbatim and analysed thematically to generate thematic networks. Analysis revealed three thematic networks. The three Global Themes represented by the networks were concerned with the following areas: the child's communication and interaction; wider societal issues; and parents' views and experiences. Each Global Theme contained lower order Organizational Themes and these in turn were comprised of Basic Themes. Parents shared many common concerns, but the data also revealed some diversity of views. The themes and sub-themes are described with illustrative and representative quotes. These parents are experts on their children and may also be experts on AAC. Many factors impact on parents and the level and type of involvement they have with their children and their upbringing. Speech and language therapists need to acknowledge parents' knowledge and expertise regarding their children. They need to recognize that there are parent, child, family and external factors which impact on parents' ability and willingness to be involved in speech and language therapist provision, and that these factors are not static over time. The use of ethnographic interviewing techniques should be considered a valuable aspect of speech and language therapist intervention.