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
Citations
Altmetric:
Affiliation
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
Other Contributors
Publication date
2023-08
Subject
Collections
Research Projects
Organizational Units
Journal Issue
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.
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 -
Type
Article