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Examining the Need For, and Provison Of, AAC in the United Kingdom

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Examining the Need For, and Provison Of, AAC in the United Kingdom This is a repository copy of Examining the need for, and provison of, AAC in the United Kingdom.. White Rose Research Online URL for this paper: http://eprints.whiterose.ac.uk/76406/ Version: Published Version Monograph: Enderby, P., Judge, S., Creer, S. et al. (1 more author) (2013) Examining the need for, and provison of, AAC in the United Kingdom. Research Report. Communication Matters Reuse Unless indicated otherwise, fulltext items are protected by copyright with all rights reserved. The copyright exception in section 29 of the Copyright, Designs and Patents Act 1988 allows the making of a single copy solely for the purpose of non-commercial research or private study within the limits of fair dealing. The publisher or other rights-holder may allow further reproduction and re-use of this version - refer to the White Rose Research Online record for this item. Where records identify the publisher as the copyright holder, users can verify any specific terms of use on the publisher’s website. Takedown If you consider content in White Rose Research Online to be in breach of UK law, please notify us by emailing [email protected] including the URL of the record and the reason for the withdrawal request. [email protected] https://eprints.whiterose.ac.uk/ Communication Matters – Research Matters: an AAC Evidence Base Beyond the Anecdote Examining the need for, and provison of, AAC in the United Kingdom. April 2013 Professor Pam Enderby University of Shefield Simon Judge Barnsley Hospital Dr Sarah Creer University of Shefield Dr Alexandra John University of Shefield This report details research carried out by the University of Shefield in collaboration with Barnsley Hospital as part of the AAC Evidence Base project. The project was commissioned and led by Communication Matters, the UK charity for augmentative and alternative communication. It was funded by the National Lottery through Big Lottery Fund. Contents 1 Chapter 1: The background to AAC service provision 13 Chapter 2: Quantitative data Collecting data on the need and use of AAC 51 Chapter 3: Provision and use of services for augmentative and alternative communication 104 Chapter 4: Examining the Need for and Provision of AAC in the United Kingdom 115 Appendix 1 Information sheets for potential research participants 126 Appendix 2 Study protocol 135 Appendix 3 Scoping study example data 136 Appendix 4 Study participants 136 Appendix 5 Topic sheets - interviews and focus groups 139 Appendix 6 Example service component map (regional communication aids service) 141 Appendix 7 Summary of data from RCSLT Focus Groups 145 Appendix 8 AAC industry/supplier and charity surveys 148 Appendix 9 Practitioners’ survey 156 Appendix 10 Mapping AAC provision: 2012-13 v8.3.1 (22/11/12) Chapter 1: The background to AAC service provision. Introduction 1 How many people are using AAC? 2 What are the routes to provision of AAC? People of all ages with severe speech and language impairments use a range of Augmentative and Alternative Communication (AAC) methods to assist them to AAC communicate their views and needs. AAC includes non-technological systems such as signing, use of Communication is more than giving someone a message, symbols and picture charts as well as sophisticated but needs to allow a person to initiate and end technology including dedicated computerised systems interactions, maintain different topics of conversation, and voice output communication aids. Without support make requests, relate information and allow a historical people with communication dificulties are unable to narrative to be maintained. realise their potential and face social isolation, AAC strategies can help a person communicate wants, dependency, a decreased quality of life, and increased needs, thoughts, and ideas and express their personality care costs. when they are unable to use speech. The project detailed in this report was commissioned and Augmentative or alternative communication (AAC) led by Communication Matters, the UK charity for systems may be of several types. The term encompasses augmentative and alternative communication, and unaided modes that rely on a user’s body to convey funded by the National Lottery through Big Lottery Fund. messages; for example gestures, signs and facial Communication Matters is committed to the advance of expressions. Also, it includes aided communication research in the AAC ield and in particular research that: modes that require additional materials or devices. • promotes understanding of the need for provision of Within the category of aided AAC there is a commonly- AAC and ongoing support services used further sub-division of high-tech and low technology • improves the quality of life for individuals and groups aided options as listed in Table 1.1. of individuals by understanding their needs Table 1.1: Summary of commonly deined types of AAC • inluences local and national policy and practice and Augmentative & Unaided E.g. eye pointing, facial leading to better services and interventions for Alternative expressions, signing Communication people who use AAC Aided “Low-tech” E.g. symbol/pictures/ • promotes community learning and creates charts/books, Eye Pointing frame, opportunities for people who use AAC and their paper and pencil families “High-tech” E.g. dedicated AAC The objective of this programme of work was to provide devices (mostly computerised), AAC fundamental evidence to support the appropriate software for computers development of AAC services and improve provision of and mobile devices aided communication and other AAC strategies. The During the course of this project it became clear that the research, building on the literature, aimed to: provide an deinitions used within the ield of AAC were not improved picture of the need for AAC and aided consistently used around the country. A process of communication to support commissioning and planning agreeing deinitions was undertaken, explained later in of services; provide a better understanding of the current this report. These agreed (UK) deinitions are in Table 1.2. picture of AAC service provision to help inform the development of aided communication and other AAC services to meet the needs of people who use AAC; and to contribute to the knowledge about the use of AAC in the UK and the factors that may contribute towards successful use. There were two overarching research questions that this work aimed to address: 1 Beyond the Anecdote – Examining the need for, and provision of, AAC in the United Kingdom Chapter 1: The background to AAC service provision. continued Table 1.2: AAC deinitions developed during the study Systematic literature review Augmentative and Alternative Communication (AAC): AAC covers a range of strategies, equipment, systems, methods and Method techniques used by people who have impairments of speech, language or communication. These approaches may be unaided or aided and used to Identiication of studies augment or provide alternative approaches that utilise visual, spoken and written mediums. It can include use of eyes, facial expression, gesture, Relevant published literature reporting high-tech AAC signing, symbols, communication boards or books and technology based systems such as voice output communication aids.” AAC may incorporate intervention was identiied via searching of the CINAHL, the integration of different systems Cochrane library, EMBASE, MEDLINE, PsychINFO, CSA, Unaided communication: and Web of Science electronic databases. Search terms Unaided communication is a subset of AAC which refers to those methods used related irstly to conditions (for example learning of communication which do not involve additional equipment, such as disability, cerebral palsy, Parkinson’s Disease), secondly signing, body language, eye pointing, facial expression and gesturing. impairment terms (such as language disorder, Aided communication: communication impairment), together with AAC terms Aided communication is a subset of AAC which refers to those methods of (such as speech generating device, assistive aids) and in communication which involve using additional equipment, such as picture, addition, commonly used devices (such as Canon symbol, letter or word boards or books and technology based systems such as voice output communication aids. This may be used alongside speech Communicator, Minspeak, LightWriter). The full search and unaided communication. strategy is available from the authors. In addition to this Low-tech aided communication: electronic database searching, we scrutinised the These systems are those which do not require power to function such reference list of included papers and review papers for as picture, photo/symbol, letter or word boards or books. It can also any additional citations of potential relevance. include objects of reference, or the use of everyday objects that support communication. The review considered studies published in peer- High-tech aided communication: reviewed journals between 2000 and 2010 that were These technology based systems are those which require some power to reported in English. This time period was chosen given function, ranging from systems such as single recorded message output the rapidly expanding and changing nature of the devices to more complex systems which take text or symbol input and technological developments. We intended to complete a produce a speech output. “state of the art review” to provide evidence regarding Communication aid: the current level of knowledge in the ield, and therefore
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