Title: Specific phobias in children with learning disabilities (SPIRIT): An adaptation and feasibility study
Funder: Department of Health and Social Care

Abstract: Background: A large number of children with learning disabilities have significant fears or phobias. These can, for example, include a severe fear of dogs or other animals, visiting the dentist, or having an injection. There is good evidence that talking psychological therapies are an effective treatment for fears, but many of these treatments have not been tested for use with people who have learning disabilities. These treatments need to be adapted before they can be used with this population because of difficulties with verbal communication, restricted and repetitive behaviours, and challenging behaviour. _x000D_ _x000D_ Aims: (a) we will work with young people with learning disabilities, carers and family members, and therapists to adapt an existing treatment for dog phobia in adolescents with severe learning disability and autism. We will also complete a feasibility study to try out our treatment and get feedback from participants and their families. We will also collect information about what treatment people are currently receiving, and test out some measures (e.g. parent completed checklists). _x000D_ _x000D_ Method: Our study has two phases. In our first phase, we will change an existing treatment together with young people with learning disabilities, parents, carers and therapists. We will use action research methods to both change our treatment and examine several possible outcome measures for use in the feasibility study. We will describe the treatments and supports (Treatment as Usual; TAU) that young people are receiving by completing a national (UK) survey of parents who have a child who has learning disability and a phobia, along with interviews with health professionals who work with children with learning disabilities. In our second phase, we will complete a study of our treatment with up to 20 participants who will receive the treatment plus treatment as usual (TAU). We will interview parents/carers and therapists about their experiences of taking part in the study. This will allow us to understand the acceptability and experience of receiving the treatment. _x000D_ _x000D_ Patient and Public Involvement: We want young people with learning disabilities, carers, and family members, involved in our study. They will be part of the project steering group that is in charge of the study. The Foundation for People with Learning Disabilities will also help with this study. They will help us prepare our paperwork, find people to be in the study, and tell people about the study and what we find out._x000D_ _x000D_ Dissemination: We will write peer review articles which are published in a journal, which will be read by professionals. The Foundation for People with Learning Disabilities will also help us to tell people about the study by writing about it in their newsletter and talking about it in a podcast. They will also talk about what the study found out with young people, parents, carers, and professionals through social media and their website. We will also put information about our study on our website. Together with the Foundation for People with Learning Disabilities, young people, and parents we will have a seminar to talk about the study. We will also talk about the study at conferences.

Lay abstract: Aims: (a) using co-production with our Patient and Public Involvement (PPI) partners, this study will adapt and evaluate the feasibility of an existing exposure-based intervention for specific phobia in children and adolescents with moderate–severe Learning Disability. This work will be undertaken within two Phases: (1a) adaptation of the existing intervention, (1b) description of treatment as usual (TAU), and (2) evaluation of the feasibility of the proposed intervention._x000D_ Background: The estimated prevalence of specific phobia in children and adolescents with LD ranges from 1.9-17.5% compared to 5-9% in the general population of children. Our recent review of mental health treatments for people with severe LD failed to find good evidence for any psychological treatment for anxiety, including for specific phobia. Despite significant need, there is a lack of research evidence to guide treatment for children with LD and specific phobia. _x000D_ Methods: The study has two phases. The first phase will involve the adaptation of an existing intervention using co-production with our PPI partners, inclusive of children and young people, parents/carers, and therapists. We will h adapt the intervention and examine several possible outcome measures for use in the feasibility study. We will describe the treatments and supports (Treatment as Usual; TAU) that young people are receiving by completing a national (UK) survey of parents who have a child who has LD and a phobia, along with interviews with health professionals who work with children with learning disabilities. In the second phase, we will complete a study of the manualised intervention with up to 20 participants who will receive the intervention plus treatment as usual (TAU). Parents/carers and therapists will be interviewed about their experiences of taking part in the study, to evaluate the acceptability and experience of the intervention. _x000D_ Timelines for delivery: The project will run over 18 months. Phase 1a will run for 5 months within the first 6 months of the project. Phase 1b will run concurrently with 1a, over the first 6 months of the project. Phase 2 will run over 13 months, and recruitment will be open for 7 months. The final 2 months of the project will consist of data analysis, interpretation, reporting and dissemination events, and report writing for scientific publication and presentations. _x000D_ Anticipated impact and dissemination: This study will result in the adaptation and development of an intervention for the treatment of specific phobia in young people with moderate-severe LD, along with validated outcome measures, to inform a future pilot trial which would use a randomised design. In addition to publishing peer review articles, we will work with our PPI members and the Foundation for People with Learning Disabilities to maximise dissemination. This will include publishing newsletter articles and a podcast. The Foundation for People with Learning Disabilities will share information about our study and our findings with parents, carers, and stakeholders through social media and their website. We will also share information about our study and findings on our own websites. Together we will host a seminar about our work, which will be delivered jointly with PPI members. We will also disseminate our findings at a national/international conference.

Research activity codes: 6.6 PSYCHOLOGICAL AND BEHAVIOURAL
Health categories: MENTAL HEALTH