'Communication is everything I think': parenting a child who needs Augmentative and Alternative Communication (AAC)

Background: 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. Aims: 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. Methods & Procedures: 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. Outcomes & Results: 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. Conclusions: 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

Communication and people with the most complex needs: what works and why this is essential

Belgium Herbarium image of Meise Botanic Garden

Direct speech and language therapy for children with cerebral palsy: findings from a systematic review

Children with cerebral palsy (CP) often have speech, language, and/or communication disorders and are referred to speech and language therapy (SLT). They may also be referred to SLT services for dysphagia: treatment of which is beyond the scope of this review. Although the exact prevalence of the communication disorders associated with CP is not known, it has been estimated that approximately 20% of children with a diagnosis of CP have severe communication impairment and are classified as non-verbal. Many more will have less severe speech and communication disorders as a consequence of their motor impairment, or disorders arising from speech, language, and cognitive processing deficits associated with CP

Refugee children with communication disability in Rwanda: providing the educational services they need.

Research undertaken in Rwanda aims to provide firm evidence for use in improving access to inclusive educational services for refugee children with communication disability

Niños refugiados con discapacidad de comunicación en Ruanda: brindar los servicios de enseñanza que necesitan

La investigación realizada en Ruanda tiene el objetivo de ofrecer pruebas contundentes para utilizar con el fin de mejorar los servicios de enseñanza inclusiva a niños refugiados con discapacidad de comunicación

A systematic review of research on staff training as an intervention to develop communication in children and adults with profound intellectual and multiple disabilities

Introduction This paper aims to identify to what extent staff training interventions are successful in enhancing the development of communication skills in people with profound intellectual and multiple disabilities. Methods A systematic review was undertaken, conforming to PRISMA guidelines. English language, peer reviewed, empirical studies of staff training interventions to enhance the communication of people with profound intellectual and multiple disabilities were included. Databases Scopus, Web of Science, Proquest, Linguistics and Language Behaviour Abstracts (LLBA) and Medline were searched in July 2015 and updated in December 2022. Quality appraisal was conducted on 13 studies using Crowe's Critical Appraisal Tool (CCAT). Results Few good quality evaluations of interventions were found. Challenges to research rigour included the diversity of people with profound intellectual and multiple disabilities, small sample sizes, intervention intensity and the management of fidelity. Conclusions Manualised and bespoke interventions showed promise in improving staff communication and responsiveness

Decision-making in communication aid recommendations in the UK : cultural and contextual influencers

High-tech communication aids are one form of augmentative and alternative communication (AAC) intervention offered to children following an assessment process to identify the most appropriate system based on their needs. Professional recommendations are likely to include consideration of child characteristics and communication aid attributes. Recommendations may be influenced by contextual factors related to the cultural work practices and service context of professionals involved, as well as by contextual factors from the child’s life including their family environment and wider settings. The aim of this study was to explore the influence of cultural and contextual factors on the real-time decision-making processes of specialized AAC professionals in the UK. A total of six teams were recruited to the study. Each team carried out an assessment appointment related to a communication aid recommendation for a child and family. Following the appointment, each team participated in a focus group examining their decision-making processes during the preceding assessment. Inductive coding was used to analyse the transcribed data, and three organizing themes emerged relating to the global theme of Cultural and Contextual Influencers on communication aid decision-making. An explanatory model was developed to illustrate the funnelling effect that contextual factors may have on decision-making, which can substantially alter the nature and timing of a communication aid recommendation. Implications for clinical practice and future research are discussed