The I-ASC research team outline an ongoing study into providing appropriate communication aids for children who are non speaking
Janice Murray1, Yvonne Lynch1, Liz Moulam1, Stuart Meredith1, Juliet Goldbart1, Simon Judge2, Nicola Randall2, David Meads3, Edward Webb3, Stephane Hess3 and Helen Whittle1.
1Manchester Metropolitan University, 2Barnsley Assistive Technology Service – Barnsley Hospital NHS Foundation Trust, 3University of Leeds.
The Identifying Appropriate Symbol Communication (I-ASC) research project is a three-year study funded by the NIHR*. Children who are non speaking or have reduced speech intelligibility may benefit from using an augmentative or alternative communication system (AAC). AAC aids may take the form of a communication book with picture-symbols, or a high tech device with picture-symbols and voice output. Little is known about the process of learning to use a communication aid at the same time as learning the spoken language in the environment and acquiring skills and knowledge through the educational curriculum. Furthermore, there seems to be a high level of abandonment of communication aids (between 30 to 50 per cent) recommended for use. The consequences of abandonment may have negative impact on a child’s communication and educational attainment. In addition, the financial consequences cannot be underestimated, both in provision of expensive equipment and the longer term. The I-ASC research project set out to better understand the influencers on communication aid recommendation, with a view to enhancing the assessment and recommendation process and consequently reducing the abandonment of communication aid technology. The potential long-term objective of I-ASC is to enable children who are non speaking to fulfil their communication, educational and employment potential.
How was the research conducted?
The research was a large scale project involving participants from across the UK. We adopted a mixed method design which included a review of available literature on communication aid design, the characteristics of children who benefit from AAC and a description of the team around the child who might be involved in aid recommendation. Specialist practitioners, including education and health service staff, as well as family members and children who use AAC, were interviewed for their views on the process of assessment and recommendation of communication aids. Finally, we delivered two surveys to practitioners to look at choices made when forced to choose from a specified range of device or child characteristics.
Together, these sources of information are being collated and synthesised to inform the structure and content of a decision making guidance tool with bespoke resources for practitioners, families and children to use in supporting future AAC decision making. This final element is currently in production and we are seeking all interested parties to evaluate the resource over the next few months.
We are keen to include all stakeholders in this aspect of the research. So far we have been able to include the voices and opinions of speech and language therapists, occupational therapists, teachers, therapy and teaching assistants, psychologists, clinical scientists, physiotherapists and most importantly family members and children and young adults who use AAC.
Preview of findings
There are many results and findings from the I-ASC research project, and some are still being evaluated and synthesised; however, there are a few findings that we can share already.
More UK studies are needed and need to be published. In the literature reviewed it was clear that most studies were North American and there may be cultural factors that mean these findings may not fully apply to children and adults growing up in the UK.
Language and communication
To reach their potential, children need to be given both language and communication instruction. For example, intervention may need to include language targets such as comprehension and use of grammatical markers in structured tasks alongside communication skill work where the focus may be on producing clear messages as quickly as possible (and therefore grammatical markers may be omitted for communication efficiency purposes, for instance, “He pulled the cushion off the chair” compared to “cushion off chair”).
Currently, the literature suggests that there are a small number of language or communication attributes of symbol communication aids that practitioners may carefully review in order to inform decisions. These include vocabulary design and organisation, choice of symbol system and encoding method both for now and for the future, plus the choice of vocabulary selection and access method.
The I-ASC research extends this focus. The child and aid characteristics are reinforced by the survey findings in terms of practitioner device preferences and child characteristics influencing choices. Important insight has been gained, showing that physical traits of children are perceived to be relatively less important in AAC professionals’ decision making than cognitive, learning and personality traits, and that the interface, content and language features of devices are relatively more important than hardware features.
The decision making context is very complex as evidenced by the emergence in our findings of multiple cultural and contextual factors that may in the end have greater impact on decisions made than the characteristics of child or aid. These are summarised as contextual influencers; these include ways of working as influenced by available skill and knowledge in team members as well as constraints and opportunities offered across service delivery models. The literature suggests that families and children who need AAC should be central to decision making; whilst our findings suggest that they are often peripheral. This finding reinforces the principles enshrined in the SEN and Disability Code of Practice (CoP) for collaborative working across services. However, it highlights that families and clients may remain peripheral to such working practices. This may impact on later abandonment. Also, available resources and recognition of transition factors are key, for example new locations and new staff teams, and post recommendation implications include on-going support and knowledge to enable everyone including the child and the team around the child to support communication aid use. Assessment models, structures and processes vary widely. Children who use AAC constitute a diverse group and assessment processes may need to be tailored to individual need, supporting the need for diverse applications of assessment models. The impact of all of these factors are meshed within the final clinical decision and recommendation process. The development of the I-ASC decision making resource is currently in production. It will offer resources for professionals from health, education and social care. The research team will hold a series of dissemination events in late Autumn 2018 and early 2019 to showcase the decision making resources.
So far, most studies have not examined the outcomes of clinical assessments undertaken through assessment and recommendation review. Looking forward, this suggests that outcome focused research may help identify processes and practices that facilitate appropriate symbol communication aid prescription and inhibit device abandonment.
This article was produced by The Identifying Appropriate Symbol Communication (I-ASC) research project, with the assistance of Robert McLaren, Manager for the All-Party Parliamentary Group for Assistive Technology (APPGAT). APPGAT is seeking to ensure Parliament is informed by the new research into augmentative or alternative communication.
The researchers would like to thank the children and young people, their families and associated practitioners who have already contributed to this research.
Anyone wishing to contribute to on-going evaluations of resources should contact the I-ASC research team via their website:
* This project was funded by the NIHR Health Services and Delivery Program (project 14/70/153). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.