In partnership with Dravet Syndrome UK, researchers at The University of Glasgow
revealed the severe psychological impact on families caring for a child with Dravet
Syndrome. Through group discussions with 24 parents, the study uncovered insights
into their emotional well-being and the importance of tailored support.
Key findings
- Grief and Loss: Parents described feelings of grief for the life they had
imagined for their child and family. They also described social loss as friends
and family distanced themselves. - Significant Psychological Distress: Parents reported high levels of trauma
and symptoms of PTSD, driven by repeated seizures, emergency admissions,
and the constant fear of sudden death. - Lack of Support: Many parents described struggling to access appropriate
help, with existing services often failing to meet their needs for psychological
and practical support. - Ongoing Burden: The complexity of Dravet Syndrome means parents must
provide round-the-clock care whilst taking on medical, advocacy, and
coordination roles.
Despite these challenges, the research also found that parents; coping mechanisms
can evolve over time, with some finding strength through accepting external help,
seeking therapeutic support, or connecting with other families facing similar
experiences.
Read the full study in the European Journal of Paedatric Neurology.
Call to action
We hope that this study can be used to inform professional practice, and to develop
packages of support, including targeted therapeutic interventions for parents of
children with Dravet Syndrome. We’re also advocating for better training for
healthcare professionals to recognise and respond sensitively to parental trauma.
By listening closely to real-life experiences, this research highlights how important it
is to support families not just medically, but emotionally and practically too.