A core aspect of the CASTLE Sleep-E trial is understanding what the children and parents who are taking part think about the treatment and management of Rolandic epilepsy.
In this part of the CASTLE Sleep-E, we will ask children and parents to tell us about their experiences of living with Rolandic epilepsy. We’re interested to learn about:
- their decisions and experiences of living with Rolandic epilepsy;
- their decisions and experiences of their/their child’s sleep;
And for the children and parents who used the CASTLE Online Sleep Intervention (known as COSI) and the sleep monitors, we want to learn about:
- their decisions about and experiences of using the CASTLE Online Sleep Intervention (known as COSI) and wearing sleep monitors.
We want to find out more about children and parents’ experiences of taking part in the study including things like where parents get information about their child’s epilepsy from, any changes to family life that have happened as a result of their child’s epilepsy, and how important sleep is to managing their child’s condition.
WHAT ARE WE DOING?
We will interview up to 60 children (aged 7 and over) and their parents/carers (120 people) who are taking part in the CASTLE Sleep-E trial. All the interviews with be done remotely using a secure system such as Zoom.
We will interview people on two occasions; the first one will be about 3 months after you joined the study and the second one about 9 months after you joined the study.
The questions we will ask and the resources we will use in the interviews have been developed with advice from children and parents on the CASTLE advisory panels. They have been specifically tailored to meet the needs of different age groups and abilities. The interview prep sheet for parents and activity booklet for children which we will use in the interviews will help prompt children and parents to fully express their ideas and opinions.
WHO IS DOING THE INTERVIEW PART OF THE STUDY?
This part of the CASTLE Sleep-E is led by Professor Bernie Carter and Professor Lucy Bray of Edge Hill University, both of whom have lots of experience working with children and families and using qualitative methods. Dr Ali Rouncefield-Swales is the Research Fellow who will be doing many of the interviews and keeping in touch with children and their parents.
The team is based at Edge Hill University in the Faculty of Health, Social Care and Medicine.
Take part in the this study
To register your interest in this study, please contact us.