Our project aims to gather the views and voices of children and young people with epilepsy and their families, in this period when they were being considered for surgery. There are three groups of children and families that we are speaking to: those who have been through the pathway and have had surgery, those who were on the pathway but were not deemed eligible for surgery, and those who are currently on the pathway and are being considered for surgery. This consideration process involves multiple medical appointments and investigations across several months. Families and medical teams report this to be an anxious time for all involved, and yet children’s and families voices and lived experiences are rarely sought or reported in research about surgery.
We are particularly interested in understanding how children, young people and their families (including siblings) manage this time in their lives and are focusing on four different contexts: home and family-life, the hospital and medical appointments, school and education, and friends and the community. We want to know how children and families adjust(ed) during this period; what worked well, what helped, what accomplishments they felt proud of, how they managed uncertainty, and what their hopes are for the future. We know there are extremely challenging moments when children are being considered for surgery – and we do not shy away from these – but we are also focused on uncovering the positives, successes, and moments when children and families felt that they had more control or say in what happened.
Doing this work in the middle of a pandemic has its challenges! We had originally planned to visit families in their homes or to work alongside the clinical psychology team at the hospital when children came in for appointments. However, we have instead adapted our methods and moved our data collection online, in keeping with the prevailing COVID-19 guidance. Moreover, many children and young people with epilepsy also have additional learning or communication needs and we are especially keen to include these children in our project. For children with additional support needs, we are using pictures and symbols to guide and scaffold discussions, and we are working with parents to understand how best to approach what may be difficult conversations with young people in a virtual space. We carefully plan each interview and support conversations by personalising the approach for each child/young person. For example, we may ask about a toy or comfort item that may have attended medical appointments with them, and we prepare a bespoke set of pictures in advance. We are excited to see our ‘methodological’ toolbox grow as we discover and trial new online approaches to data collection including virtual timelines, post-it notes, and even scavenger hunts!
Families often comment that a lot of research in the field of epilepsy is very medically-focused – and this is with very good reason! But through this project, we really want to open a space for and amplify the voices of families and particularly children with epilepsy. Our overall aim is to ensure that these views are fed back into the pathway planning and that these key stakeholder perspectives influence, and ultimately improve, the experience of the surgical pathway for children and families in the future.
-Dr Hanna Kovshoff
Research Roundtable: Epilepsy in Childhood
You can also hear more about Dr Kovshoff’s research in our Research Roundtable on Epilepsy in Childhood on Tuesday 2nd February at 2pm. Dr Hanna Kovshoff is joined by last weeks Research Blog contributor, Dr Sukhvir Wright and Anoushka a ‘Young Rep’ from our charity partner Young Epilepsy. You can register for the webinar here.