Awareness of social care needs in people with epilepsy and intellectual disability
Gabrielsson, A Tromans, Samuel Newman, H Bassett, P Watkins, L Cooper, M Griffiths, L
Gabrielsson, A
Tromans, Samuel
Newman, H
Bassett, P
Watkins, L
Cooper, M
Griffiths, L
Abstract
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 nondiscriminative 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.
MIDER Authors
Affiliations
Hertfordshire Partnership University NHS Trust, Hatfield, UK; University of Leicester, Leicester, UK; Leicestershire Partnership NHS Trust, Leicester, UK; University of Plymouth Peninsula School of Medicine, Plymouth, UK; Tizard Centre, University of Kent, Canterbury, UK; UCL London, UK; Stats Consultancy Bucks, UK; University of South Wales, Pontypridd, UK; Swansea Bay University Health Board, Port Talbot, UK; National Development Team for Inclusion Bath, UK; Epilepsy Action, Leeds, UK; Coventry and Warwickshire Partnership Trust, Birmingham, UK; Royal Free London NHS Foundation Trust, London, UK; Newcastle University, Newcastle, UK; Belfast Health and Social Trust, Belfast, UK; Royal Wolverhampton NHS Trust, Wolverhampton, UK; Cornwall Partnership NHS Foundation Trust, Truro, UK
Citations
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Date
2023-08
Type
Article
Subject
Collections
Citation
TY - JOUR AU - Gabrielsson, Alexandra AU - Tromans, Samuel Joseph AU - Newman, Hannah AU - Triantafyllopoulou, Paraskevi AU - Hassiotis, Angela AU - Bassett, Paul AU - Watkins, Lance AU - Sawhney, Inder AU - Cooper, Madeline AU - Griffiths, Lyn AU - Pullen, Angie AU - Roy, Ashok AU - Angus-Leppan, Heather AU - Thomas, Rhys AU - Kinney, Michael AU - Tittensor, Phil AU - Shankar, Rohit PY - 2023/05/30 SP - T1 - Awareness of Social care needs in people with epilepsy and intellectual disability VL - 145 DO - 10.1016/j.yebeh.2023.109296 JO - Epilepsy & Behavior ER -