Trial to answer dilemma of improving sleep in children with epilepsy

To mark Purple Day, Georgia Cook, Postdoctoral Researcher on the CASTLE study at King’s College London blogs about a range of evidence based techniques designed to improve sleep for children suffering from epilepsy.

Georgia Cook CASTLEWe all know the importance of getting good, quality sleep and the benefits it gives both our mind and body when we do. If we don’t get enough good quality sleep it can affect us in lots of different ways including how we feel and how we think. As an experienced sleep researcher – I know this well!

It wasn’t until I joined the Changing Agendas on Sleep, Treatment and Learning in Childhood Epilepsy (CASTLE) team that it became clear to me that sleep can be even more important to those who have epilepsy. This awareness developed from my reading of research evidence and hearing from clinicians working with families of children with epilepsy, parents of children with epilepsy and the children themselves.

[ Image: Georgia Cook with CASTLE colleague Lucy Wiggs ]

Sleep and seizures are linked in many ways and can have a huge impact on a child suffering side effects from medication and an increased amount of seizures. It’s particularly important that parents of children with epilepsy understand the importance of sleep, can support healthy sleep and, if necessary, improve sleep in their child.

A key aim of the CASTLE research programme is that parents’ views and experiences are acknowledged and contribute towards research. Many parents have told us that sleep difficulties are a problem for them and their child. They say that while they are aware of the importance of sleep for their children they didn’t feel well-informed or supported about how best to help their child with sleep.  

That is where the CASTLE Online Sleep Intervention (COSI) comes in.

COSI brings a range of information about sleep and specific evidence-based techniques that it is hoped will help parents to address some of the common problems experienced by children with epilepsy.

It has been developed as a result of collaborations between clinicians and sleep experts at Evelina London Children’s Hospital, Kings College London, Oxford Brookes University, The Royal Children’s Hospital Melbourne and by parents of children with epilepsy.

Parents and children have guided the development of the intervention and the functionality of the website, including telling us what sort of sleep issues they want help with and what practical challenges need to be included as special considerations when parenting a child with epilepsy.    

We hope that this will fill the gap in available information and support which was highlighted by many parents as well as providing practical help to support improved sleep in children and their parents.

In the clinical trial, COSI will be used by half of the families who participate and we will be exploring, among many other things, if this intervention helps to improve the sleep of children with epilepsy.

It is wonderful to be involved in the CASTLE project, where we have developed an online intervention that we hope will meet parents’ needs. If COSI is found to be a successful intervention (as part of the main CASTLE clinical trial) we are hoping to be able to make the website available as a resource that can be used by others to help support healthy sleep in children with epilepsy.

If you want to find out any further details about this project please visit the CASTLE website. or follow us on Twitter: @CASTLE_Epilepsy.

King’s Health Partners Neurosciences has an ambitious vision to use our collective clinical, research, and educational expertise to deliver world-class patient care and research. 

This article presents independent research funded by the National Institute for Health Research (NIHR) under the Programme Grants for Applied Research programme RP-PG-0615-20007. The views expressed in this article are those of the author and not necessarily those of the NIHR or the Department of Health and Social Care.