WIELD 2
What was the WIELD 2 research project about?
Around one in five people with learning disabilities have epilepsy, and their seizures can be severe, frequent and difficult to manage with medication. As a result, epilepsy can have a significant impact on their health and wellbeing.
The aim of WIELD 2 was to find out whether using a picture-based book about epilepsy might help people with learning disabilities and how it might be best used in routine NHS and social care settings.
What happened in the WIELD 2 research project?
The WIELD 2 research project used a book called ‘Getting on With Epilepsy’, which is published by Books Beyond Words. Twenty people with learning disabilities and epilepsy used the book with a nurse or doctor, and this was video-recorded. They also used the book at home. We talked to the people with learning disabilities and epilepsy, the nurses and the doctors to find out what they thought about using the book.
What did we find?
People enjoyed the book and most people found it helpful. The book helped people to understand more about epilepsy and think about how to manage their epilepsy. Some people found that the book prompted them to talk about their epilepsy more and think about their own experiences. The book could also help people to feel less anxious and increase their confidence around living with epilepsy.
From watching the video-recorded sessions and listening to people’s views about using the book, we have produced some written and video guidance about how the book might be used in clinical settings.
Guides to using 'Getting on With Epilepsy'
- an easy-read guidance document for people with learning disabilities and epilepsy.
- a guidance document aimed at clinicians and supporters that might like to use the book.
- a one page summary also aimed at clinicians and supporters.
- a video guide with examples of how the book might be used.
Further information and contact details
The study manager was Dr Silvana Mengoni, at the University of Hertfordshire. Feedback and enquiries can be shared with Silvana via email s.mengoni@herts.ac.uk
Funding was awarded to Dr Silvana Mengoni and Dr Georgina Parkes from the British Medical Association via the Scholarship Grant.
The predecessor to the present study was the WIELD study, which was conducted in 2014-16. This was a feasibility randomised controlled trial, which found that it would be feasible to carry out a large trial comparing the use of ‘Getting on with Epilepsy’ and usual care for people with learning disabilities and epilepsy in the NHS. The findings of this study have been published in academic journals.