Authors' objectives: Typically developing children start producing words between 12 and 18 months, developing fully expressive speech around 4 years. Children with conditions like cerebral palsy may struggle to develop intelligible speech. Many of these children construct messages through using communication aids that speak pre-stored words or phrases, providing independent communication. There is clear evidence using a communication aid has positive benefits impacting on well-being, sense of belonging, and educational attainment. Specialist communication aid services are commissioned by NHS England, delivering high cost services to 1 in 2000 people including 8,627 children and young people under 25 years as potential beneficiaries. These services are unique in achieving an additional £15m recurrent investment from 2014. Decisions about communication aid provision are complex and multifactorial: children who use, or go on to use, symbolic systems present the greatest challenge in identifying appropriate aids and language representation systems. The clinical decision making process requires expertise and involves the child, family, local health and education professionals. Current evidence suggests high levels of abandonment of aided technology, possibly due to a lack of successful consideration of each different individuals perspective and sparse evidence to inform the decision making process. Poor decision making harms both quality of life and life chances, resulting in significant negative impacts and costs to both specialised and local services. Support for this research comes from: The James Lind Alliance Childhood Disability Research Priority Setting Partnership. In 2014, of 53 priority research questions, the second was about improving communication for those with neurodisability and investigating the best way to select the most appropriate communication strategies . The SEN & Disability Code of Practice (2014) places the highest emphasis on communication; statutory services must collaborate to provide effective support. Health has a duty to assess, prescribe and support augmentative communication. The project addresses the NIHR call for the evaluation of health care interventions and health services to better manage long term conditions in children & young people . To answer the question What factors influence clinicians decisions about provision of symbol communication aids? and improve future decision making the researchers, including an adult who uses a communication aid and a parent of a young person using an electronic voice, will explore current provision. Interviews and focus groups with all stakeholders in the assessment process, including 35 children as participants, will inform the attributes used to conduct 2 studies with professionals to identify what communication aid characteristics drive provision choices for different children. Prescribing symbol communication aids is costly. Multi-disciplinary assessment may occur over several sessions, the equipment then needs ongoing individual support. The outcomes will directly affect service delivery, improving individual provision decisions. Tied to the decision making process to ensure longevity, outputs will include a prototype decision resource and guidance for clinicians, parents and others to support selection of the most appropriate symbol communication aid. Dissemination will be led by our PPI researchers through stakeholder workshops, conferences and publications.

Project Status: Completed

URL for project: http://www.nets.nihr.ac.uk/projects/hsdr/1470153

Year Published: 2020

URL for published report: https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/1470153/#/

English language abstract: An English language summary is available

Publication Type: Not Assigned

Country: England, United Kingdom

Organisation Name: NIHR Health Services and Delivery Research programme

Contact Address: NIHR Journals Library, National Institute for Health and Care Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK

Contact Name: journals.library@nihr.ac.uk

Contact Email: journals.library@nihr.ac.uk

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