Incorporating a Picture‐Based Book Into Routine Care for People With Epilepsy and Intellectual Disabilities: Perspectives From Patients, Carers and Clinicians.
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| Title: | Incorporating a Picture‐Based Book Into Routine Care for People With Epilepsy and Intellectual Disabilities: Perspectives From Patients, Carers and Clinicians. |
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| Authors: | Mengoni, Silvana E. (AUTHOR), Williams, Charlotte Hamlyn (AUTHOR), Batchelor, Rachel (AUTHOR), Fitzgerald, Lauren (AUTHOR), Murdoch, Jamie (AUTHOR), Sawhney, Indermeet (AUTHOR), Wellsted, David (AUTHOR), Willmott, John (AUTHOR), Parkes, Georgina (AUTHOR) |
| Source: | British Journal of Learning Disabilities. Jun2026, Vol. 54 Issue 2, p151-159. 9p. |
| Subjects: | Anxiety prevention, Self-management (Psychology), Research funding, Qualitative research, Questionnaires, Interviewing, Physicians' attitudes, Hospitals, Descriptive statistics, Confidence, Books, Thematic analysis, Epilepsy, Research methodology, Data analysis software, Patients' attitudes, Caregiver attitudes, Medical referrals |
| Geographic Terms: | United Kingdom |
| Abstract: | 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. Summary: People with learning disabilities and epilepsy do not always receive information that is easy to understandDoctors and nurses used a book with pictures called 'Getting on with epilepsy' with people with learning disabilities and epilepsyWe asked doctors, nurses, people with learning disabilities and their carers what they thought about the bookThe book helped people to understand their epilepsy and feel less worried about itPeople thought that book should be used in the NHSDoctors and nurses should have training so they know how best to use the book [ABSTRACT FROM AUTHOR] |
| Copyright of British Journal of Learning Disabilities is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.) | |
| Database: | Psychology and Behavioral Sciences Collection |
| FullText | Text: Availability: 0 |
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| Header | DbId: pbh DbLabel: Psychology and Behavioral Sciences Collection An: 193814881 AccessLevel: 6 PubType: Academic Journal PubTypeId: academicJournal PreciseRelevancyScore: 0 |
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| Items | – Name: Title Label: Title Group: Ti Data: Incorporating a Picture‐Based Book Into Routine Care for People With Epilepsy and Intellectual Disabilities: Perspectives From Patients, Carers and Clinicians. – Name: Author Label: Authors Group: Au Data: <searchLink fieldCode="AR" term="%22Mengoni%2C+Silvana+E%2E%22">Mengoni, Silvana E.</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Williams%2C+Charlotte+Hamlyn%22">Williams, Charlotte Hamlyn</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Batchelor%2C+Rachel%22">Batchelor, Rachel</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Fitzgerald%2C+Lauren%22">Fitzgerald, Lauren</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Murdoch%2C+Jamie%22">Murdoch, Jamie</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Sawhney%2C+Indermeet%22">Sawhney, Indermeet</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Wellsted%2C+David%22">Wellsted, David</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Willmott%2C+John%22">Willmott, John</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Parkes%2C+Georgina%22">Parkes, Georgina</searchLink> (AUTHOR) – Name: TitleSource Label: Source Group: Src Data: <searchLink fieldCode="JN" term="%22British+Journal+of+Learning+Disabilities%22">British Journal of Learning Disabilities</searchLink>. Jun2026, Vol. 54 Issue 2, p151-159. 9p. – Name: Subject Label: Subjects Group: Su Data: <searchLink fieldCode="DE" term="%22Anxiety+prevention%22">Anxiety prevention</searchLink><br /><searchLink fieldCode="DE" term="%22Self-management+%28Psychology%29%22">Self-management (Psychology)</searchLink><br /><searchLink fieldCode="DE" term="%22Research+funding%22">Research funding</searchLink><br /><searchLink fieldCode="DE" term="%22Qualitative+research%22">Qualitative research</searchLink><br /><searchLink fieldCode="DE" term="%22Questionnaires%22">Questionnaires</searchLink><br /><searchLink fieldCode="DE" term="%22Interviewing%22">Interviewing</searchLink><br /><searchLink fieldCode="DE" term="%22Physicians'+attitudes%22">Physicians' attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Hospitals%22">Hospitals</searchLink><br /><searchLink fieldCode="DE" term="%22Descriptive+statistics%22">Descriptive statistics</searchLink><br /><searchLink fieldCode="DE" term="%22Confidence%22">Confidence</searchLink><br /><searchLink fieldCode="DE" term="%22Books%22">Books</searchLink><br /><searchLink fieldCode="DE" term="%22Thematic+analysis%22">Thematic analysis</searchLink><br /><searchLink fieldCode="DE" term="%22Epilepsy%22">Epilepsy</searchLink><br /><searchLink fieldCode="DE" term="%22Research+methodology%22">Research methodology</searchLink><br /><searchLink fieldCode="DE" term="%22Data+analysis+software%22">Data analysis software</searchLink><br /><searchLink fieldCode="DE" term="%22Patients'+attitudes%22">Patients' attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Caregiver+attitudes%22">Caregiver attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Medical+referrals%22">Medical referrals</searchLink> – Name: SubjectGeographic Label: Geographic Terms Group: Su Data: <searchLink fieldCode="DE" term="%22United+Kingdom%22">United Kingdom</searchLink> – Name: Abstract Label: Abstract Group: Ab Data: 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. Summary: People with learning disabilities and epilepsy do not always receive information that is easy to understandDoctors and nurses used a book with pictures called 'Getting on with epilepsy' with people with learning disabilities and epilepsyWe asked doctors, nurses, people with learning disabilities and their carers what they thought about the bookThe book helped people to understand their epilepsy and feel less worried about itPeople thought that book should be used in the NHSDoctors and nurses should have training so they know how best to use the book [ABSTRACT FROM AUTHOR] – Name: AbstractSuppliedCopyright Label: Group: Ab Data: <i>Copyright of British Journal of Learning Disabilities is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.) |
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| RecordInfo | BibRecord: BibEntity: Identifiers: – Type: doi Value: 10.1111/bld.70024 Languages: – Code: eng Text: English PhysicalDescription: Pagination: PageCount: 9 StartPage: 151 Subjects: – SubjectFull: Anxiety prevention Type: general – SubjectFull: Self-management (Psychology) Type: general – SubjectFull: Research funding Type: general – SubjectFull: Qualitative research Type: general – SubjectFull: Questionnaires Type: general – SubjectFull: Interviewing Type: general – SubjectFull: Physicians' attitudes Type: general – SubjectFull: Hospitals Type: general – SubjectFull: Descriptive statistics Type: general – SubjectFull: Confidence Type: general – SubjectFull: Books Type: general – SubjectFull: Thematic analysis Type: general – SubjectFull: Epilepsy Type: general – SubjectFull: Research methodology Type: general – SubjectFull: Data analysis software Type: general – SubjectFull: Patients' attitudes Type: general – SubjectFull: Caregiver attitudes Type: general – SubjectFull: Medical referrals Type: general – SubjectFull: United Kingdom Type: general Titles: – TitleFull: Incorporating a Picture‐Based Book Into Routine Care for People With Epilepsy and Intellectual Disabilities: Perspectives From Patients, Carers and Clinicians. Type: main BibRelationships: HasContributorRelationships: – PersonEntity: Name: NameFull: Mengoni, Silvana E. – PersonEntity: Name: NameFull: Williams, Charlotte Hamlyn – PersonEntity: Name: NameFull: Batchelor, Rachel – PersonEntity: Name: NameFull: Fitzgerald, Lauren – PersonEntity: Name: NameFull: Murdoch, Jamie – PersonEntity: Name: NameFull: Sawhney, Indermeet – PersonEntity: Name: NameFull: Wellsted, David – PersonEntity: Name: NameFull: Willmott, John – PersonEntity: Name: NameFull: Parkes, Georgina IsPartOfRelationships: – BibEntity: Dates: – D: 01 M: 06 Text: Jun2026 Type: published Y: 2026 Identifiers: – Type: issn-print Value: 13544187 Numbering: – Type: volume Value: 54 – Type: issue Value: 2 Titles: – TitleFull: British Journal of Learning Disabilities Type: main |
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