Me and My Epilepsy
The Muir Maxwell Epilepsy Centre is the University's hub for investigating the causes of childhood epilepsy. And now children are being given a voice through research that focuses on their own experiences and words.
'Me and My Epilepsy' is a PhD study by Becky Black, a University of Edinburgh researcher who has been exploring children’s and parents’ experiences of childhood epilepsy, and children’s involvement in their own healthcare, in both a hospital setting and at home.
Her study explored three main questions:
- What does having epilepsy mean to children and their parents?
- How and to what extent are children involved in their epilepsy care both at home and in the clinic?
- What support and information needs do children and parents have?
'Something that makes me daydream'
Becky's research, which included interviewing children living with epilepsy, and their parents, found that resources to help them understand and ultimately live with the condition were often lacking.
"I found that both children and parents had unmet information and support needs across a variety of different aspects of the condition" she says. "The children did not always understand their epilepsy, often not knowing why they took their medication or what was actually happening to them when they had a seizure."
The understanding children did have of their epilepsy was primarily drawn from their own lived experiences and information that their parents had provided to them, says Becky:
"And I found that this was not always a lot, and the lack of understanding often led children to experience a felt-stigma regarding their epilepsy, frequently struggling to speak about their condition with others, often because they were unable to articulate what epilepsy actually is. I would hear them try to explain it as ‘something that makes me daydream’ and referring to their medication as ‘a funny liquid I take with breakfast and dinner’.”
The lack of resources puts an extra pressure on parents, too.
"They often see themselves as informational gatekeepers," says Becky. "They find themselves having to be selective about what and how they tell their children, and they frequently withhold information."
Through the course of the interviews, Becky also learned that many of the children were unaware that there are others living with the condition.
"During the interviews I always encouraged the children to ask questions," she says. "And one of the most striking things I was asked was ‘did I know any other children with epilepsy’. This is so crucial when coupled with the findings that most children did not really understand or know about their condition. So I decided that I wanted to amplify those children’s voices and make it clear to them that they were not the only ones with epilepsy."
Becky achieved this by creating a short animated film with the help of graphic motion designer Jacob Capener, using the experiences and words of 23 children.
"The film aims to help explain what the condition is and what it means to be diagnosed," says Becky. "It also explains the diagnosis process, the variety of seizures, and talks about types of medication. Most importantly, it reminds children they are not alone."
Watch the video:
A clear voice
'Me and My Epilepsy' forms part of the Muir Maxwell Epilepsy Centre's wide-ranging research into epilepsy. The Centre is co-led by Dr Richard Chin and Professor Mike Cousin. Richard co-supervised Becky's research and sees it as an important step forward in our understanding of how children cope with the condition.
"The opinions, perspectives and needs of children with epilepsy are often not obtained by direct questioning of the children themselves," he says. "We are extremely proud of this video animation, which is a clear voice of and for children with epilepsy. We hope that it will be used widely in clinical practice and beyond."
Becky's qualitative study, in which children with epilepsy and their parents were individually interviewed, was funded by the RS MacDonald Trust. The animation was funded by the Cumberland Lodge and the Thomas TS Ingram Memorial Trust Fund.