Awareness of social care needs in people with epilepsy and intellectual disability.
Attitudes to epilepsy
Attitudes to intellectual disabilities
Epilepsy risk assessments
Epilepsy training
Holistic care
Quality of life
Social care
Journal
Epilepsy & behavior : E&B
ISSN: 1525-5069
Titre abrégé: Epilepsy Behav
Pays: United States
ID NLM: 100892858
Informations de publication
Date de publication:
08 2023
08 2023
Historique:
received:
30
04
2023
revised:
29
05
2023
accepted:
30
05
2023
medline:
7
8
2023
pubmed:
20
6
2023
entrez:
19
6
2023
Statut:
ppublish
Résumé
Nearly a quarter of people with intellectual disability (ID) have epilepsy with large numbers experiencing drug-resistant epilepsy, and premature mortality. To mitigate epilepsy risks the environment and social care needs, particularly in professional care settings, need to be met. To compare professional care groups as regards their subjective confidence and perceived responsibility when managing the need of people with ID and epilepsy. A multi-agency expert panel developed a questionnaire with embedded case vignettes with quantitative and qualitative elements to understand training and confidence in the health and social determinants of people with ID and epilepsy. The cross-sectional survey was disseminated amongst health and social care professionals working with people with ID in the UK using an exponential non-discriminative snow-balling methodology. Group comparisons were undertaken using suitable statistical tests including Fisher's exact, Kruskal-Wallis, and Mann-Whitney. Bonferroni correction was applied to significant (p < 0.05) results. Content analysis was conducted and relevant categories and themes were identified. Social and health professionals (n = 54) rated their confidence to manage the needs of people with ID and epilepsy equally. Health professionals showed better awareness (p < 0.001) of the findings/recommendations of the latest evidence on premature deaths and identifying and managing epilepsy-related risks, including the relevance of nocturnal monitoring. The content analysis highlighted the need for clearer roles, improved care pathways, better epilepsy-specific knowledge, increased resources, and better multi-disciplinary work. A gap exists between health and social care professionals in awareness of epilepsy needs for people with ID, requiring essential training and national pathways.
Sections du résumé
BACKGROUND
Nearly a quarter of people with intellectual disability (ID) have epilepsy with large numbers experiencing drug-resistant epilepsy, and premature mortality. To mitigate epilepsy risks the environment and social care needs, particularly in professional care settings, need to be met.
PURPOSE
To compare professional care groups as regards their subjective confidence and perceived responsibility when managing the need of people with ID and epilepsy.
METHOD
A multi-agency expert panel developed a questionnaire with embedded case vignettes with quantitative and qualitative elements to understand training and confidence in the health and social determinants of people with ID and epilepsy. The cross-sectional survey was disseminated amongst health and social care professionals working with people with ID in the UK using an exponential non-discriminative snow-balling methodology. Group comparisons were undertaken using suitable statistical tests including Fisher's exact, Kruskal-Wallis, and Mann-Whitney. Bonferroni correction was applied to significant (p < 0.05) results. Content analysis was conducted and relevant categories and themes were identified.
RESULTS
Social and health professionals (n = 54) rated their confidence to manage the needs of people with ID and epilepsy equally. Health professionals showed better awareness (p < 0.001) of the findings/recommendations of the latest evidence on premature deaths and identifying and managing epilepsy-related risks, including the relevance of nocturnal monitoring. The content analysis highlighted the need for clearer roles, improved care pathways, better epilepsy-specific knowledge, increased resources, and better multi-disciplinary work.
CONCLUSIONS
A gap exists between health and social care professionals in awareness of epilepsy needs for people with ID, requiring essential training and national pathways.
Identifiants
pubmed: 37336133
pii: S1525-5050(23)00215-9
doi: 10.1016/j.yebeh.2023.109296
pii:
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
109296Informations de copyright
Copyright © 2023 The Author(s). Published by Elsevier Inc. All rights reserved.
Déclaration de conflit d'intérêts
Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.