Awareness of social care needs in people with epilepsy and intellectual disability
ORCID
- R. Shankar: 0000-0002-1183-6933
- L. Watkins: 0000-0002-0447-5906
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 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.
Publication Date
2023-01-01
Publication Title
Epilepsy and Behavior
Volume
145
ISSN
1525-5050
Recommended Citation
Shankar, R., Gabrielsson, A., Tromans, S., Newman, H., Triantafyllopoulou, P., Hassiotis, A., Bassett, P., Watkins, L., Sawhney, I., Cooper, M., Griffiths, L., Pullen, A., Roy, A., Angus-Leppan, H., Thomas, R., Kinney, M., & Tittensor, P. (2023) 'Awareness of social care needs in people with epilepsy and intellectual disability', Epilepsy and Behavior, 145. Available at: 10.1016/j.yebeh.2023.109296" >https://doi.org/10.1016/j.yebeh.2023.109296
