Highlighting emotional challenges faced by parents/carers

Lead researcher: Professor Liam Dorris

Partners: University of Glasgow 

Start date: 2022

Promising research is underway for new and better treatments for Dravet Syndrome, but little of it is looking at the needs of parents/carers, particularly needs that are emotional and psychological. This research addresses this gap.

How do parents and carers cope and adjust after a child is diagnosed with Dravet Syndrome? What influences their resilience and coping over time? These are the kind of questions this research is trying to find answers to, with the aim of better understanding the challenges that families face.

Researchers, led by Professor Liam Dorris, Lead Clinician for the neuropsychology service at the Royal Hospital for Children Glasgow, will conduct focus groups with around 40 people affected by Dravet Syndrome. DSUK will work with the research team by recruiting parent carers to take part and organising/attending the workshops.

Ultimately, we hope that the information provided for this research will lead to a better understanding of the challenges that families face, and inform future support. The research project will be made available on our website and promoted to highlight the unmet needs of parents/carers in adapting to and coping with living with Dravet Syndrome.