Title: Teaching early reading skills to adults with intellectual disabilities (READ-IT) using a support worker/family carer mediated on-line reading programme – a feasibility study.
Funder: Department of Health and Social Care

Abstract: Research questions: Is it possible to develop an intervention to teach adults with ID to read (READ-IT) that can be delivered by community support workers/family carers? Would it be feasible to conduct a later definitive RCT of the effectiveness and cost-effectiveness of READ-IT? Background: Many adults with intellectual disabilities (ID) are unable to read and therefore miss out on critical information that is a pre-requisite for independent living. Interventions typically focus on adapting reading materials rather than teaching adults to read. We have successfully taught adults with ID to read in a forensic setting using an online reading programme, Headsprout&reg; (HER&reg;). Delivery in a secure setting is not however the same as typical community and social care settings for people with ID. Aims and Objectives: Develop an intervention (READ-IT) involving three components: an established online reading programme (HER&reg;); a support manual with additional support strategies to help community support workers/family carers facilitate the reading programme; a supervision/mentoring process during the intervention delivery. Evaluate four key aspects of the feasibility of conducting a definitive trial of HER&reg; for adults with ID using a process evaluation based on the MRC framework: 1) intervention recruitment, adherence, and reach; 2) intervention implementation; 3) intervention mechanisms, including receipt and acceptability; 4) the feasibility of implementing HER&reg; within a definitive RCT. Methods: An individually-randomised feasibility study of adults with ID. 48 Participants will be recruited from family homes, independent living, and small group settings and randomised 1:1 using a block randomisation programme to receive the READ-IT intervention or usual practice. Main inclusion criteria will be adults administratively defined as having an intellectual disability who have the capacity to give informed consent, a basic level of skills to be able to access the programme and are supported by someone who are themselves able to read and available for the study. Exclusion criteria will include any Adult with ID with visual impairments severe enough to limit their access to computer-based technology. Baseline and 6 month post randomisation measures will include the Dynamic Indicators of Basic Early Literacy Skills (DIBELS), the EQ5D-5L and the Personal Well-Being Index Intellectual Disability version as well as a measure of reading self-efficacy. All data will be reported both overall, per arm, and by setting type. Outcomes will be estimated with their associated 95% confidence intervals. A qualitative study will provide information about the experiences of adults with ID, and support workers and family carers delivering READ-IT and be a part of the process evaluation. Timelines for delivery: Study set up, intervention development mo1-3; recruitment, baseline, randomisation mo4-9; run intervention mo5-15; 6mo follow-up & qualitative interviews mo10-15; analysis, reporting/dissemination mo15-19. Anticipated Impact and Dissemination: At least 1 peer review scientific paper, a logic model, a process evaluation of the intervention and international academic conference presentation. Partnership with Mencap for dissemination to stakeholders including commissioners and policy makers. READ-IT (if effective) will be able to be delivered within an existing support structure and will give adults with ID a critical skill.

Lay abstract: Many people with learning disabilities (LD) find it difficult to learn to read. This limits their ability to do things independently. Instead, they often need other people to help them complete everyday activities. &ldquo;Easy Read&rdquo; is sometimes used to help make information easier to understand. But this &ldquo;one-size-fits-all&rdquo; does not work for everyone. Another way of helping may be to teach people with LD to read. If we can teach adults with LD to read, it is possible that they will be able to do more things by themselves and will have a better quality of life. We have developed a reading programme called Teaching early reading skills to adults with intellectual disabilities (READ-IT) based on work that we have done teaching children with LD to read as well as a small project with adults with LD. With READ-IT, adults with LD will take part in an on-line reading programme with additional support from their support workers or family carers using a guide that they will help us to produce. We plan to ask 48 adults with LD to take part in a study. They will be put into one of two groups by chance. One group will be taught to read using READ-IT, the other will have no change to their day-to-day activities. Any adult with a LD can take part if they can make the decision to take part and have some basic computer skills. They also need to have a support worker or family carer who is happy to support them. Everyone who takes part will be asked to complete some measures of things that may change during READ-IT. We are particularly interested in how well people can read and how they feel about being able to read. We will also ask about their well being and quality of life more generally. After READ-IT has been completed, we will also interview some of the adults with LD, their support workers and family carers. We will ask why they decided to take part and about their experiences having taken part in the study. This will be a small study, called a feasibility study. If it is a success, we can use what we learn to develop a larger study. An important part will be working closely with adults with LD, and with the people who help them every day, to make sure that it is easy for them to follow READ-IT and to help us design any future studies. The findings from the research will be published in academic journals. We will share the findings with families, organisations providing support to people with learning disabilities and with policy makers.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: NEUROLOGICAL;GENERIC HEALTH RELEVANCE;MENTAL HEALTH