New research reveals psychological distress experienced by families caring for a child with Dravet Syndrome

New research has shed light on the enormous psychological impact on families caring for a child or adult living with Dravet Syndrome, a devastating and complex form of epilepsy that occurs in around 1 in 15,000 births.

Conducted by researchers at University of Glasgow in partnership with Dravet Syndrome UK, the resulting study, published in the European Journal of Paediatric Neurology, provides important new insight into the ways in which parents cope and adjust to caring for a child with Dravet Syndrome, with a focus on adapting to trauma.

The study highlights the challenges families face and reveals an urgent need for better informed professional practice, and the development of packages of support, including targeted therapeutic interventions for parents of children with Dravet Syndrome and similar developmental epilepsies.

Parents taking part in the study described significant symptoms of psychological distress and PTSD. Parents also describe how the lack of support needed to care for those affected by Dravet Syndrome (which includes epilepsy, intellectual disability and a range difficulties with mobility, speech, behaviour, eating and sleeping) presents a continual struggle for them with costs to their mental health. The risk of Sudden Unexpected Death in Epilepsy (SUDEP) in Dravet Syndrome is up to 15 times higher than in other epilepsies that start in childhood and almost 1 in 5 children don’t make it into adulthood.

The new research comprised of five focus groups with a total of 24 parents of children with Dravet Syndrome who shared insights into diagnosis, medical care, relationships, and the emotional and financial strains of caregiving. The majority of those taking part in the focus groups were women.

Among the parents taking part in the focus groups was Jennifer Allen, mum to nine year old Beth who has Dravet Syndrome: Jennifer says: “For the first year of Beth’s life, I slept in hospital more than my own bed. The frequency of her seizures was huge, and they often lasted over an hour, they are horrific, very traumatic to see. I felt like I’d lost her so many times, she has been intubated twice.

“PTSD is definitely something I have suffered. A while ago, over a period of ten days, I was in ambulances with Beth being blue lighted to hospital four times. And we’d had this spell of not being in them. And her consultant walked in, and I said ‘I can’t do this anymore, I cannot go back to being here. I almost felt like I was rocking.”