Are you the parent of a child aged 5-12 years who has epilepsy and has experienced sleeplessness problems either currently or in the past (e.g. not wanting to go to bed, difficulty falling asleep, waking up during the night, waking up too early, not wanting to sleep alone)?
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 do not specifically address the sleep problems experienced by parents of children with epilepsy.
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?
We are a group of doctors and researchers who are doing a study to build an online sleep programme especially for parents of children with epilepsy who have sleeplessness problems. We need parents to tell us what help you need with your child’s sleep. In this study we aim to adapt a standard intervention to better meet the needs of parents of children with epilepsy.
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. In another, bigger study we will later test the sleep intervention with other parents to see if it works.
Who is leading the consultation work?
- Professor Paul Gringras, Consultant in Paediatric Neurodisability and Sleep Medicine. Tel:020 7188 4649 / Email: Paul.Gringras@gstt.nhs.uk
- Dr Luci Wiggs, Reader in Psychology. Tel: 01865 483710 / Email: firstname.lastname@example.org
- Professor Bernie Carter, Professor of Children’s Nursing. Tel: 01695 657771 / Email: email@example.com
- Professor Lucy Bray, Professor of Children’s Health Literacy. Tel: 01695 65 7231 / Email: firstname.lastname@example.org
- Professor Harriet Hiscock, Consultant Paediatrician and Group Leader. Tel: +61 3 93456910 / Email: Harriet.email@example.com
- Dr Heather Sutherland, research fellow working involved in the qualitative aspects of CASTLE.
Take part in the this study
Would you be willing to come to Oxford Brookes University or a venue in central London (near Waterloo for easy accessibility) or speak to our researchers on the phone or by Skype and tell us about your experiences of parenting a child with epilepsy who has/had sleeplessness problems to help us build an intervention? Would you then look through the webpages of the online sleep programme we develop and tell us what you think about it? Taking part would involve three, informal and friendly discussions (either in a group with other parents or one-to-one with the researcher if over the phone or Skype) and each discussion would take a maximum of 2 hours.
If you are interested in taking part or hearing more about this study please register your interest below; or contact Luci Wiggs (firstname.lastname@example.org or 07879 120513) for further details.