Title: Unspoken voices: What are the perspectives of people who use alternative and augmentative communication (AAC) on the impact and effectiveness of AAC equipment?
Funder: Health Education England

Abstract: Background Speech and language therapists support people who have difficulty with speech, language or communication (SLC). People with SLC needs are at greater risk of social isolation and low mood than the rest of the population and this is directly linked to their communication difficulties. One method of providing support for communication difficulties, known as augmentative and alternative communication (AAC), includes strategies such as pointing to pictures, words or letters and special equipment that can speak out messages entered into or stored within it, known as communication aids'. The NHS provides AAC services to assess, make equipment available to and support people who may benefit from AAC. There is evidence that AAC can help some people with communication difficulties but it is known that others do not engage with AAC equipment. There is a paucity of literature describing the characteristics of people who use AAC effectively, nor is it clear why some people do not engage with AAC. AAC services are currently unable collect data about the effectiveness of AAC from the user as there is a lack of suitable tools available to engage people who use AAC in providing feedback. Aims: The present study aims to build on existing research to develop a greater understanding about the factors influence engagement with AAC services, what supports people to use AAC and what outcomes are important following receipt of AAC. Plan of investigation The study will use a mixed methods approach in order to gather data from a range of sources using ongoing, iterative data analysis to inform the direction of later stages of the project. A systematic review will identify how user engagement influences the outcomes of AAC use. Narrative synthesis of the literature identified during the review will inform the qualitative aspect of the study. Qualitative interviews will be carried out to gather data from people who use AAC at different stages of their journey through AAC services. A qualitative longitudinal cohort study will capture the perspectives of people anticipating and receiving AAC services and equipment. Interviews with people who are established users of AAC will provide insights into AAC use and equipment in retrospect. Participants shall be asked about the barriers and facilitators to engagement with AAC services and the use of AAC equipment, as well as establish what the important outcomes from AAC intervention are. Participants will be recruited through a regional specialist assessment centre and a local AAC team in order to capture the perspectives of all people accessing AAC services across the care pathway. Synthesis of data from the qualitative study will inform the second stage of the project. A list of statements or themes relating to successful outcomes in AAC will be generated. The scale and scope of this list will, in discussion with the supervisory team and PPI panel, inform how to proceed with establishing a consensus about outcomes. A suitable consensus method, for example the Delphi Method or Q methodology, will be engaged to establish whether a single outcome measure reflects the diversity of the population who use AAC. A new set of participants will be recruited for the consensus gathering stage from outside of the clinical sites supporting the project in order to engage with the wider AAC community. ImpactThe project will result in a list of clearly defined support mechanisms that facilitate AAC use. It will also provide a deeper understanding of how and why people do and do not engage with AAC services and equipment. The ultimate objective is to provide validated, patient-centred outcome measures that can be used to evaluate the impact of AAC equipment.

Lay abstract: Speech and language therapists support people who have difficulty with speech, language or communication (SLC). People with SLC needs are at greater risk of feeling isolated from their communities and of experiencing low mood than the rest of the population. One method of providing support for communication difficulties is known as augmentative and alternative communication (AAC) or communication aids'. Communication aids include the use of strategies such as pointing to pictures, words or letters as well as the use of special equipment that can speak out messages entered into or stored within it. Communication aids can help support people with communication difficulties but we know that some people do not use the aids that are provided to them. There is little information available about why some people use communication aids effectively and others do not; nor do we know what successful communication' means to people who rely on communication aids and what they feel best supports them to achieve this. NHS AAC services have been developed to provide people with communication aids via a network of regional specialist centres and local services. It is important for the NHS to listen to feedback from the people who use health services in order to improve how it provides care and support. People who access AAC services can struggle to give feedback because of the nature of their communication difficulties. AAC services currently cannot collect information about how effective communication aids are from the people who access their services as there are no feedback methods available that are suitable for this group of service users. Getting people who use communication aids involved in research projects presents some challenges. They may experience difficulties that affect their movement and thinking as well as their communication. The whole group of people who use communication aids is very varied; it includes children, young people and adults who have communication difficulties from birth as well as adults who acquire difficulties later on. Communicating using an aid can be hard work and is often slow. The present study aims to develop a greater understanding about why people do and do not use communication aids. It will identify what supports people to use communication aids and how they view success with using it. A group of people who use communication aids, from both local and specialist NHS services, will be asked to join the project. The project will aim to include a mix of people that represents the variety of those who rely on communication aids. Information gathering techniques will be adapted to make it easier for people who have communication difficulties to join in the project. Interviews will be carried out with people at different stages of their journey through AAC services from referral to receiving a communication aid. The project will also to gather opinions about what outcomes are important to people after they have received a communication aid. It will aim to understand what successful outcomes, if any, are common across ages, conditions and types of communication difficulty. Information from the project will be used to produce either a single tool or a number of check lists for NHS AAC services to gather feedback from service users about what has been beneficial. This will help people who use communication aids to give feedback about their device and will help services understand how they can support people to use communication aids. The study will also generate a deeper understanding of what factors may encourage people to engage with NHS AAC services and those that may hinder engagement. This will help services improve the information and support they provide to people who may benefit from communication aids.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: MENTAL HEALTH