SPECIFIC PHOBIAS IN CHILDREN WITH LEARNING DISABILITIES (SPIRIT)
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.
What we want to do?
Our aims are (1) to 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, and (2) to 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).
How we plan to do it?
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.
What will we do with the findings?
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. will include publishing newsletter articles and 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.
Who will be involved in the study?
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.
The study is conducted in collaboration with University of Reading, Evelina London, Cardiff University, Foundation for People with Learning Disabilities and University of East Anglia.
Who funds the study?
The study is funded by National Institute for Health Research (NIHR) Health Technology Assessment.
SPIRIT Study Manager
CEDAR University of Warwick
SPIRIT Chief Investigator
CEDAR, University of Warwick
Information on the survey of treatment as usual for children with moderate to severe learning disabilities and specific phobia will be added in due course.