New UK research shows that epilepsy does not just affect the child or young person who has the condition, but can have a big impact on the mental health of their whole family too.
The study looked at parents and carers of children with epilepsy and how they are coping day to day. Researchers spoke to 127 carers from across the UK, most of them mums, about their sleep, stress levels, mental health and overall quality of life.
What they found was worrying but not surprising. Many carers said they feel constantly stressed, anxious or low. A lot of them are also struggling with poor sleep. While their physical health was often okay, their mental health was much worse than average.
Importantly, the study showed that carers’ mental health is closely linked to how their child is doing. When a child’s epilepsy has a bigger impact on their life, their parent or carer is much more likely to struggle too. This shows that epilepsy is something whole families live with, not just one person.
Epilepsy affects young people’s mental health too
At Young Epilepsy, our own research shows a similar picture for children and young people.
Around half of young people with epilepsy have mental health difficulties, like anxiety, depression or behaviour problems. In one Young Epilepsy study, 77% of young people said epilepsy has had a serious impact on their mental wellbeing, including how they feel, think and cope with everyday life.
Mental health challenges can sometimes have a bigger effect on quality of life than seizures themselves. Worrying about having a seizure, feeling different from friends, missing school or being treated differently can all add up.
Even though this is so common, many young people with epilepsy still do not get the mental health support they need. National data shows that while more children are now being asked about their mental health, only one in four epilepsy clinics offer proper mental health checks as part of routine care.
Families need support, not just seizure control
The new study also found that tiredness and low resilience make things harder for carers. This reflects what many families tell Young Epilepsy every day. Parents are often exhausted, constantly worried and trying to stay strong for their child.
Dr Jowinn Chew, Head of Research at Young Epilepsy, said:
“This research shows clearly that epilepsy affects whole families. Many young people are struggling with their mental health, and that has a real impact on their parents and carers too."
If we want young people with epilepsy to do well, we must support the wellbeing of the people who care for them as well.
Young Epilepsy is involved in research that looks beyond seizures. That includes how epilepsy affects mental health, learning, behaviour and family life. One example is the MICE study, which showed that tailored mental health support delivered through epilepsy services can really help young people feel better, even a year later.
Where to get help and support
If you are a young person with epilepsy, or a parent or carer feeling overwhelmed, you are not alone and support is available.
- Mental health support for young people
- Support for parents and carers
- Self-care for parents & carers
Young Epilepsy will keep pushing for better care that looks after mental health as well as physical health. The evidence is clear. Supporting emotional wellbeing is essential for young people with epilepsy and for the families who support them every day.
