Behavioural interventions are often used for helping with the sleep problems of children, including children with epilepsy. These sleep interventions aim to teach parents strategies which they can use to help their child to learn behaviours which encourage good sleep. However, these interventions are not designed to meet the particular needs of parents of children with epilepsy who have sleep problems. We wanted to build an online sleep programme especially for parents of children with epilepsy who have sleeplessness problems so that we could test it out, in the Sleep-E trial, to see if it helped children and their families.
We want to find out, from parents, what they think we should include or leave out of our sleep intervention. Once we know this we will develop an online sleep intervention programme especially for parents of children with epilepsy and then ask parents what they think about it and whether they think it might work.
Who are we & what are we doing?
To help us develop our online sleep programme we spoke to parents of children aged 5-12 years who have epilepsy and have experienced sleeplessness problems either currently or in the past. We wanted to learn from them about if, and how, we needed to adapt a standard intervention so that it provided information and support in a way that was most relevant and helpful to them. For example, we wanted to find out their views about the sort of information they wanted, child-sleep issues that they wanted support with and what features of the website would help to make for a good online experience. Based on what they told us we developed an online sleep programme especially for parents of children with epilepsy, with the type of content they thought would be helpful, packaged in a way that they told us would be engaging and relevant for parents. We called this the Castle Online Sleep Intervention, or COSI. We then asked parents what they thought about COSI and whether they thought COSI would be useful, acceptable and functional for parents of children with epilepsy. The parents we spoke to were all very positive about COSI and so now we will be testing it out, in the SLEEP-E trial, to see if it works.
- Professor Paul Gringras, Consultant in Paediatric Neurodisability and Sleep Medicine. Email: Paul.Gringras@gstt.nhs.uk
- Dr Luci Wiggs, Reader in Psychology. Email: firstname.lastname@example.org
- Dr Georgia Cook, Postdoctoral Researcher. Email: email@example.com
- Professor Harriet Hiscock, Consultant Paediatrician and Group Leader. Email: Harriet.firstname.lastname@example.org