Survey: Siblings of children with epilepsy feel protective, not resentful

Researcher’s experience inspires study of family dynamics

RESEARCH TRIANGLE PARK, NC – A recent survey of parents of children with epilepsy found that siblings are more likely to feel protective or concerned than jealous or resentful toward the child with epilepsy.

"We found very few disapproving feelings among siblings toward their brothers and sisters with epilepsy. The negative feelings they had were more internal, showing they were sad or worried for them," said Barbara Kroner, Ph.D., a senior epidemiologist at RTI International.

Kroner’s research is part of the Seizures and Outcomes in Children Study, or SOS-KIDS, which tracks outcomes and care of children with epilepsy and their families in Washington, D.C. She presented her findings recently at the 70th annual meeting of the American Epilepsy Society. The study is funded by the Centers for Disease Control and Prevention.

Kroner’s own family’s experience with epilepsy inspired the study, she said.

“I designed this study because of the way my twins treated their older sister when she was having a seizure,” Kroner said. “As early as 18 months of age, they would stop playing and rush over to comfort her. They would go to the cupboard and get the rescue medication without being asked. They wanted to help. As they got older they continued this protective behavior and have never once indicated they were jealous of the extra attention their sister got. I wanted to know if other siblings of children with epilepsy felt and acted the same way.”

In the study, researchers surveyed 129 parents about the impact of epilepsy on their families. Sixty-one participants had a child with epilepsy and another child that was at least 4 years old. Participants were asked to identify which statements applied to the sibling closest in age to the child with epilepsy.

Participants reported the following positive or protective feelings among the siblings:

  • 56 percent said the sibling worries the child with epilepsy will have a seizure
  • 46 percent said the sibling is concerned the child with epilepsy feels pain or suffers during a seizure
  • 43 percent said the sibling is proud of the child with epilepsy
  • 64 percent said the sibling feels protective of the child with epilepsy

Negative feelings towards the child with epilepsy were reported less frequently:

  • 15 percent said the sibling complains the child with epilepsy got more attention
  • 8 percent said the sibling doesn't tell other people the child has epilepsy
  • 11 percent said the sibling is often angry

Openness and sharing can help children cope with their sibling’s diagnosis, Kroner said. She suggests bringing siblings to a doctor’s appointment soon after diagnosis to learn about seizures and how to respond to them. Parents should also provide opportunities at home to discuss concerns. Open dialogue will help dispel myths about epilepsy and reduce fears.

"It's important to help siblings understand what is happening during a seizure and how the child feels, which will help relieve some of that anxiety,” Kroner said. “It may also empower them to educate others and to be an advocate for all people with epilepsy.”