Identification of seizures in children with Learning Disabilities v1
Research type
Research Study
Full title
Identification of seizures in children with Learning Disabilities: The thoughts of parents and carers.
IRAS ID
268407
Contact name
Jay Shetty
Contact email
Sponsor organisation
The University of Edinburgh
Duration of Study in the UK
0 years, 3 months, 6 days
Research summary
The aim of this study is to identify how parents and carers identify an epileptic seizure in children with learning disabilities.
The co-existence of epilepsy and learning disability is well established (Roberston et al., 2015) and provides many challenges in identifying epileptic seizures from non-epileptic episodes or behaviours. A reduced ability to clearly communicate changes in feeling, abnormal patterns of movement or stereotypic behaviour may confuse the diagnosis of epilepsy.
Both the diagnosis and treatment of epilepsy is heavily reliant on the reporting of an observer. This is significant in the management of childhood epilepsy, and even more so where the child has a disability and may be unable to communicate effectively.
By interviewing parents of children with a both an identified learning disability and a diagnosis of epilepsy, there may be an opportunity to identify the key distinguishing features in recognising epileptic activity. This would not only assist clinicians in correctly diagnosing patients when presenting to clinic, but aid parents in identifying a serious condition in their child.
The interview will be structured, with each interviewee being asked the same questions. This would last no longer than 30 minutes, after this they would not be contacted again. The interview will explore the child’s ability to communicate with the parent/carer, developing an understanding of how able the child is to express seizure activity. The interview will then explore the character of the child’s seizures. Participants would be identified through attendance at an Epilepsy clinic at the Royal Hospital for Sick Children in Edinburgh. The study would take place over three months.
Robertson, J., Hatton, C., Emerson, E. and Baines, S. (2015). Prevalence of epilepsy among people with intellectual disabilities: A systematic review. Seizure, 29, pp.46-62.
REC name
Yorkshire & The Humber - Sheffield Research Ethics Committee
REC reference
19/YH/0328
Date of REC Opinion
3 Oct 2019
REC opinion
Favourable Opinion