Specific phobias in children with learning disabilities (SPIRIT): An adaptation and feasibility study

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.

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.

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.

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.

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.