Information on SUDEP in children: what are the effects on parents?
Research type
Research Study
Full title
Providing information about the risk of sudden death in epilepsy (SUDEP) in children: what are the effects on parents?
IRAS ID
214894
Contact name
Helen Galliard
Contact email
Sponsor organisation
University of Edinburgh
Duration of Study in the UK
1 years, 5 months, 8 days
Research summary
Sudden Unexpected Death in Epilepsy (SUDEP) describes a death in someone with epilepsy that cannot be explained. It is recommended that information about SUDEP should be discussed with parents of children who have epilepsy, but little is known about the experience of parents reacting to this information. Ramachandaran et al. (2013) examined what parents wanted to be told about SUDEP. This study also questioned whether or not parents should be told. However, this research did not explore parents’ experiences. It also did not look at any changes in parent’s behaviour toward their children.
This project will look closely at the impact of SUDEP discussions and what mothers of children with epilepsy want to know about SUDEP. Mothers are being focused on to keep the participants as similar as possible, future research may also investigate fathers’ responses. Anonymised interviews will be conducted with mothers of children with epilepsy who have talked to their child’s paediatrician about the risk of SUDEP. The focus of the interviews will be to gain an in-depth understanding of the psychological impact of this SUDEP discussions. This may include changes in anxiety levels, parenting behaviours or interactions with their child.
This study hopes to gain a better understanding of how best to discuss the risk of SUDEP with parents (when and how best to talk about this). nterview transcripts will be analysed to look at the psychological impact of finding out about SUDEP. By understanding more about mother’s experiences, it may help to inform how information can be tailored more appropriately will ideally enhance understanding of providing information on SUDEP and help to limit emotional distress.
REC name
East of Scotland Research Ethics Service REC 1
REC reference
16/ES/0133
Date of REC Opinion
22 Nov 2016
REC opinion
Further Information Favourable Opinion