The Emotional Impact of Caring for a Child With Epilepsy

Childhood epilepsy can have long-term consequences for those with the condition. But epilepsy also affects the parents and caregivers of children who have it.¹

Caring for a child with epilepsy can cause great stress. According to a 2022 report, the condition affects all areas of a family's life. This included:¹

• Sleep
• Education
• Social activities
• Time outdoors

Both children with epilepsy and their caregivers struggle with mental health issues. The 2022 report focused on the parents and caregivers of children up to the age of 18.¹

Worry about managing their child's seizures

The medical management of epilepsy usually involves taking anti-seizure drugs and, possibly, surgery. Parents and caregivers worry about the medical management of their child's epilepsy. They fear:^1,2

• The child will have a seizure in the middle of the night
• The child will have a seizure when away from home.
• The child's seizures may worsen over time

Sudden Unexpected Death in Epilepsy (SUDEP) was a major concern. Some caregivers were so afraid of SUDEP that they lost sleep.¹

Concerns about a child's mental health

The fears of parents and caregivers went beyond seizure management. They worried about their child's mental health. Children with epilepsy may struggle with depression and anxiety.¹

Parents and caregivers feared that:¹

• Upsetting comments could make their child feel stressed
• All the talk about the child's condition would make them feel different
• The child would feel isolated from their siblings and classmates
• The child might be bullied, which could lead to low self-esteem<

Fears for their child's future with epilepsy

Some parents and caregivers limited their child's activities. They worried that the child would not receive proper care during sleepovers or school outings.¹

Most parents and caregivers encouraged their child to attend school. They wanted the child to have a good education and were concerned about how often their child missed school. Another issue was how seizures might affect their child's ability to learn. At the same time, adults worried that side effects of medicine might affect their child's learning.¹

Wondering about their child's future caused more stress. Would the child be able to work? Live independently? Have meaningful relationships?¹

The emotional toll on parents and caregivers

Caring for children with epilepsy can be a heavy burden. This is especially true for:³

• Households with lower incomes where money worries add stress
• A child with an additional medical condition
• Caring for a child whose epilepsy is poorly controlled

The search for proper treatment could lead to feelings of anger and frustration. All these responsibilities could cause parents and caregivers to feel depressed and anxious.³

Parents' and caregivers' fears are not often recognized by healthcare workers. Doctors and other professionals focus on the medical management of a child's epilepsy. Even when support is given, it may not match the family's needs.¹

Lack of emotional support can lead to parents and caregivers being overwhelmed by fear. But the good news is that clear communication can help. For example, when doctors discussed the low risk of SUDEP, parents and caregivers became less anxious.¹

The need for compassion in epilepsy care

The 2022 study recommends considering compassion-focused therapy (CFT) for these parents and caregivers. CFT helps people understand the source of their feelings. The therapy unpacks how these feelings affect that person. It is designed to help the person manage strong emotions.¹

Support from the child's medical team is vital. Along with that support, CFT can offer parents and caregivers some emotional relief. This will make them better able to care for the child and enjoy their time together.¹