Although the trial and the sleep study hope to answer many important questions, unless we talk to the children and parents we won’t know what they think about important parts of the treatment and management of rolandic epilepsy.
In this part of the study, children and parents are asked to tell us about their experiences of living with rolandic epilepsy. We’re interested to learn about their experiences of taking the study medication, how they/their child is sleeping, and the impact of epilepsy on them/their child’s learning.
We want to find out more about their experiences of taking part in the study including things like deciding whether to take part in the study and what, if anything, concerned them about the study.
Who are we & what are we doing?
In the sleep study we will interview 6-10 parents about their experiences of using the learning and support available via the electronic sleep behaviour intervention, how they found using the intervention, how acceptable it was for their child and how it could be improved.
In the main trial we will interview 50 parent-child pairs (100 people). We plan to talk with them on three occasions (within the first 2-4 weeks of starting on the trial, and then 6 months and 12 months later). We will also interview people who decided not to take part in the trial.
The questions we ask will be developed with advice from the advisory panels and will be specifically tailored to meet the needs of different age-groups and developmental abilities. We also plan to use different activities in the interviews to help prompt the children and parents to fully express their ideas and opinions.
Who is doing the qualitative research study?
This interview-based part of CASTLE 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 Heather Sutherland is the Research Fellow who will be undertaking many of the interviews and engaging with the children and their parents on a regular basis.
The team is hosted by Edge Hill’s Faculty of Health and Social Care, which is committed to conducting collaborative research to inform the improvement of health and wellbeing of people locally, nationally and internationally.
Take part in the this study
To register your interest in this study, please complete our short online form. A member of our team will be in touch with you very shortly.