WIELD 2
Research type
Research Study
Full title
Using a picture booklet as a reasonable adjustment to improve epilepsy management for people with learning disabilities.
IRAS ID
254590
Contact name
Silvana Mengoni
Contact email
Sponsor organisation
University of Hertfordshire
Duration of Study in the UK
1 years, 1 months, 31 days
Research summary
One in five people with learning disabilities (LD) has epilepsy, and their seizures are often frequent, severe and difficult to control with medication, with a negative effect on quality of life.
People with LD and epilepsy often do not receive the same standard of care as the general population. Reasonable adjustments to their care could improve epilepsy management and quality of life. The WIELD study demonstrated that this may be possible using a picture booklet intervention. The ‘Getting on With Epilepsy’ booklet uses pictures to tell a story about a young man with LD and epilepsy who learns how to better manage his epilepsy.
The present study, WIELD 2, has two research questions: (1) what are the mechanisms of change of the intervention that lead to improved epilepsy management and quality of life?; (2) how can the intervention be optimally delivered in routine care?
People with LD and epilepsy will use the picture booklet in an appointment with a clinician. We will video and audio-record this session. We will then ask participants to use the booklet at least twice at home during the next 4-weeks. Participants will fill in questionnaires about their epilepsy and using the booklet at home. We will ask participants to make short video diaries to tell us what it was like to use the booklet. Interviews will be carried out with participants, carers and the clinicians involved in the intervention. The study will last 14 months overall.
The information collected will help us to identify key features of the intervention that may lead to change in epilepsy management and quality of life, and any barriers and facilitators to effective use in the NHS. These findings will be used to produce guidance for optimal use of the booklet, which will be widely disseminated at the end of the study.
REC name
South Central - Oxford C Research Ethics Committee
REC reference
19/SC/0029
Date of REC Opinion
5 Feb 2019
REC opinion
Favourable Opinion