To mark Purple Day on 26 March, Dr Sam Lyle, Family Engagement Officer for the Changing Agendas on Sleep, Treatment and Learning in Childhood Epilepsy (CASTLE) Programme at King’s College London, blogs about conducting research into treating epilepsy in children with family engagement in mind.
The CASTLE study is focused on rolandic epilepsy, which is the most common type of childhood epilepsy and affects around one in six children with the condition in the UK. Children with rolandic epilepsy find that their learning, sleep, behaviour, self-esteem and mood are often affected, and the condition can cause stress in the family.
Treating epilepsy with drugs to reduce seizures has been the traditional goal of medical treatment. However, simply reducing seizures doesn’t necessarily make much difference to the way children and parents feel. What we do know is that active participation by patients and their carers in health research is associated with better outcomes – which is of course better for all concerned. As a result, we are working in partnership with children and young people with the condition, as well as parents and carers, through our advisory panels. The panels help the researchers by using their experiences to directly inform how the research should be designed, carried out and shared with others.