Sleep problems are common in children with epilepsy.
This research study aimed to work out how well an online sleep resource for parents of children with epilepsy (CASTLE Online Sleep Intervention, or COSI) worked and how much it cost compared to the usual information parents get about sleep (usual care). The study finished in 2024 and the findings will be published in summer 2025.
Who did the study and who funded it?
A team of researchers and health professionals from five different universities did the study and it was funded by the National Institute of Health Research in the UK.
Parents and young people with epilepsy helped us design the study.
What was the study design?
Children with epilepsy aged 4-12 years with sleep problems and their parents were asked to take part.
Families were randomly chosen to either get any usual information (standard care) about sleep or get any usual information about sleep and were provided with an iPad with the online sleep resource for parents (COSI) on it.
What information was collected?
Information was collected from children and parents after 3 months and 6 months.
Children and parents were asked to wear a special actigraphy watch to measure movement and sleep during the day and night.
Children and parents were asked to fill out questionnaires about sleep, quality of life, well-being, the use of health services and frequency of seizures at 3 months and 6 months after joining the study.
Children completed some tests about memory and attention on an IPad.
Some children and parents were asked to join an interview to share their views about the online sleep resource and taking part in the study.
What was the online sleep resource?
The online sleep resource is called COSI – this stands for CASTLE Online Sleep Intervention.
It has been designed with children with epilepsy and their parents.
Parents work through 11 sections with information about
- sleep and epilepsy
- some strategies to use to improve children’s sleep
- common anxieties about sleep and epilepsy.
The resource uses animations and text information.
The information in the resource is personalised for each parent.
Who took part in the study?
85 children with epilepsy and their parents took part.
42 parents got the usual information about sleep and 43 parents were given the online sleep resource to work through.
Families were recruited from 26 hospitals across the UK.
22 families were interviewed, 9 who had been given the online sleep resource and 13 who had just had usual sleep information.
Most of the children were not newly diagnosed as having epilepsy.
18 out of the 85 children were already prescribed melatonin.
It was difficult to recruit families to take part in the study.
What did the study find out?
Parents had higher levels of knowledge about sleep after they had used the online sleep resource
Children whose parents had used the online sleep resource went to sleep 16 mins quicker than children in the usual information group
There were no other differences or improvements in a child’s sleep between the groups who got usual sleep information or the parents who were given the online sleep resource.
23 out of the 43 parents who were given access to the online sleep resource used it.
The parents who did use the online sleep resource reported that most of the content was helpful.
What did the interviews with families find out?
Of the 9 parents interviewed who had been given the online sleep resource, 3 had used it.
Many of the parents from both groups described already knowing quite a bit about managing their child’s sleep before the study.
Families said they wanted reliable, up-to-date and accessible information about sleep and epilepsy.
Many families said that epilepsy nurses or charities were a good source of information.
Some of the questionnaires filled out for the study were described as ‘too long’ and children had not liked wearing the actigraphy watches.
What did we learn from this study?
The online sleep resource had some benefits for those parents who accessed it.
We wonder if this was because many of the children had had epilepsy for some time and some were already taking medicine to help them sleep.
The online resource and sleep information may work better for families if used sooner after a child’s diagnosis of epilepsy.
The online resource and sleep information may work better for families if supported by health professionals.
There is a need for more research to see how the online sleep resource can be adapted and used more widely.
About our research
We are a research group from King’s College London dedicated to finding the cause of childhood epilepsies. Our research explores the genetics of childhood epilepsy in order to improve the outlook for both diagnosis and treatment.
Publications
Childhoodepilepsy.org has a wide range of research publications, and supporting information documents, for parents of children affected by epilepsy, clinicians and research professionals.
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