Using a picture-based book to support epilepsy care in clinical consultations for people with intellectual disabilities

Mengoni, Silvana E., Williams, Charlotte Hamlyn, Katangwe-Chigamba, Thando, Murdoch, Jamie, Sawhney, Indermeet, Wellsted, David, Willmott, John and Parkes, Georgina (2024) Using a picture-based book to support epilepsy care in clinical consultations for people with intellectual disabilities. Epilepsy & Behavior, 159. ISSN 1525-5050

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Abstract

Background and aims People with intellectual disabilities are more likely to have epilepsy than the general population. A picture-based book, Getting on with Epilepsy, may help to improve their epilepsy management and quality of life. The present study aimed to explore how the book could be best used in routine clinical care. Methods Twenty people with epilepsy and intellectual disabilities were video-recorded using the Getting on with Epilepsy book with a nurse or doctor. This was analysed using conversation analytic methods. Eighteen patients and five clinicians took part in interviews to explore their views on book use, which were thematically analysed. All data were then synthesised to form themes. Results Three themes were identified which demonstrated the importance of (1) understanding the book depicted seizures (2) relating the book to the participants’ experiences (3) using the book as an education and information tool. The themes highlighted the techniques and approaches that clinicians used to facilitate understanding. Some tensions and differences were noted between training and implementation in routine practice, particularly around prompts in themes 1 and 3 intended to correct or change participants’ interpretation of the book. Conclusions The Getting on with Epilepsy book can be used in routine clinical practice to support people with intellectual disabilities and epilepsy. There was a balance between exploring patients’ narratives and understanding with the need to convey clinical information, and this may also apply to the use of other accessible resources.

Item Type:	Article
UEA Research Groups:	Faculty of Medicine and Health Sciences > Research Groups > Norwich Clinical Trials Unit
Depositing User:	LivePure Connector
Date Deposited:	22 Aug 2024 10:30
Last Modified:	14 Nov 2024 21:30
URI:	https://ueaeprints.uea.ac.uk/id/eprint/96310
DOI:	10.1016/j.yebeh.2024.109984

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