Title: Identifying appropriate symbol communication aids for children who are non-speaking: enhancing clinical decision making
Funder: Department of Health and Social Care

Abstract: Symbol communication aids are used by children with little or no intelligible speech; positive effects are well documented (Dada & Alant, 2009). Aids are prescribed following multi-professional assessment. We use the term “clinician” to denote the health professionals in the assessment team; primarily speech and language therapists (SLTs), occupational therapists (OTs), psychologists and clinical scientists. Johnson et al. (2006) however note significant variation in provision and unacceptably high levels of abandonment; between 30-50%. No evidence based guidelines exist to support clinicians or families in these decisions. The main research aim is to determine how to optimise clinicians’ decisions regarding provision of generic symbol communication aids. The study addresses key research questions aimed at improving children’s outcomes: What characteristics related to the child and generic communication aids do clinicians consider important in making decisions about communication aid provision? What other factors influence or inform the decision? What characteristics are considered important by other participants (e.g. the child and family) and how do these impact in the short, medium and long term? What guidance and resources would enhance the quality, accountability and comparability of decision making? The research has 7 Work Packages (WP) exploring existing theory, current practice, and how new theory will support evidence based clinical decision making. The research adopts a mixed methods approach: WP1: 3 linked systematic reviews (i) speech and language development (ii) communication aid attributes (iii) clinical decision making and prescription. WP2: Focus groups and observations with up to 60 clinicians and other professionals (e.g. specialist teachers) to establish the factors they consider in decision making; to include characteristics of the device, the child, their support etc. WP3: In-depth interviews, focus groups and observations with up to 120 participants to understand the perceptions of young people who use communication aids, families and professionals. Child and family involvement is crucial to unpick the long term impact of decisions on people who use symbol communication aids and their support networks. WP4: Informed by WP2 and 3, we will develop, test and conduct two Discrete Choice Experiments (DCE) with clinicians and other professionals (n=200) to identify what communication aid characteristics drive provision recommendations. WP5: To influence practice within the NHS the final phase will combine all WP results to develop a prototype decision support resource and decision tree with guidance to ensure the best match between communication system and child. Prior to dissemination, participants will review the proposed guidance for fitness for purpose. Framework Analysis will be used to analyse the qualitative data (WP2,3 & 5) and Regression Analysis to analyse WP4. WP6: Dissemination of findings led by our PPI co-researchers will be key to embedding change, ultimately resulting in better outcomes for the child. WP7: Project management from application to dissemination and reporting on the project. Our PPI co-researchers are integral to the development and delivery of each work package. The project will be overseen by a highly experienced steering board consisting of relevant academics, PPI, clinical and NHS England commissioning members. WP8: Public Involvement evaluation. This WP will evaluate the impact of PI involvement of those who might be regarded as marginalised and vulnerable. From the outset this project has included people who might be described in this way. They have been involved in the bid develop, the award delivery and the outputs. This WP aims to offer advice of 'how to' successfully involve vulnerable and marginalised people as co-researchers. It will consider the impact on the timeframe, the finances, the research content and delivery of research objectives.

Lay abstract: 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. A further aim of this work includes the need to evaluate Public Involvement (PI) in the whole research process. Consequently, an additional research component evaluates the impact of PI involvement throughout the research project. this has always included those who might be regarded as marginalised and vulnerable. From the outset this project has included people who might be described in this way. They have been involved in the bid develop, the award delivery and the outputs. This aspect of the research will result in advice on 'how to' successfully involve vulnerable and marginalised people as co-researchers. It will consider the impact on the timeframe, the finances, the research content and delivery of research objectives.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;7.3 MANAGEMENT AND DECISION MAKING
Health categories: MENTAL HEALTH;NEUROLOGICAL