Using a picture booklet as a reasonable adjustment to improve epilepsy management for people with learning disabilities

Project: Research

Project Details


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. The WIELD study showed that a picture booklet intervention, as a reasonable adjustment to epilepsy services, could have benefits for people with LD. The present study aims to evaluate the mechanisms of change of the intervention and how best to deliver the intervention in a routine care setting. People with LD and epilepsy will use the booklet in a routine appointment with a nurse, and we will ask them to use it at least twice more at home over 4-weeks. Through analysing video-recordings of the nurse-led session, collecting information about home-use and conducting interviews with patients, carers and nurses, we will explore the key features of the intervention session, and any barriers and facilitators to effective delivery. We will use these findings to produce written and audio-visual clinically-relevant guidance for optimal use of the booklet, which will be widely disseminated to facilitate uptake.
Effective start/end date1/12/1831/08/21


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