Incorporating a picture-based book into routine care for people with epilepsy and intellectual disabilities: Perspectives from patients, carers and clinicians

Background: People with intellectual disabilities are more likely to experience epilepsy than the general population, negatively affecting their quality of life. Accessible and personalised resources may support epilepsy management. This study explores patients', carers' and clinicians' perspectives on using a picture-based book to support epilepsy care in a clinical consultation. Methods: Eighteen adults with intellectual disabilities and epilepsy took part in an interview 4-weeks after they had used the Beyond Words ‘Getting on with epilepsy’ book with a clinician. In 13 of these interviews, carers also took part. Five clinicians involved in book use also took part in interviews. Reflexive thematic analysis was used. Findings: Book use extended people's understanding of epilepsy, reducing anxiety and increasing confidence. Before using the book, clinicians needed to be familiar with the book's content, how to use the book and the patients' background and preferences. The book was felt to support epilepsy care in a routine service context, and participants highlighted when and how the book may be best targeted for maximum benefit. Conclusions: Use of a picture-based book can provide accessible and tailored information to support epilepsy care for people with intellectual disabilities. It was felt to be feasible to use in routine clinical care, and may also be beneficial in home and social care settings.