HOUSTON – Siblings of children with epilepsy generally are not resentful of or embarrassed by them, but tend to feel protective and worry about them, suggests research being presented at the American Epilepsy Society 70th Annual Meeting.
“When a child has a chronic disease, it impacts the family and we wanted to learn how it affects siblings of children with epilepsy,” said Barbara Kroner, Ph.D., M.P.H., a senior epidemiologist at RTI International, a nonprofit research institute
in Research Triangle Institute, N.C. “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 for or worried about them.”
The research was part of the larger Seizures and Outcomes Study to track the effect of the condition, outcomes and care of Washington D.C.-area children newly diagnosed with epilepsy. The study included a question asking parents to provide information
about the impact on a sibling at least 4 years old and closest in age to their child with epilepsy. This section of the survey was addressed by 61 parents. The four most common responses reported by the parents were:
- 34 (56 percent) said the sibling worries the child with epilepsy will have a seizure
- 28 (46 percent) said the sibling is concerned the child with epilepsy feels pain or suffers during a seizure
- 26 (43 percent) said the sibling is proud of the child with epilepsy
- 39 (64 percent) said the sibling feels protective of the child with epilepsy
Far fewer siblings expressed negative feelings toward the child with epilepsy. For example:
- 9 (15 percent) parents said the sibling complains the child with epilepsy gets more attention
- 5 (8 percent) said the sibling doesn’t tell people the child has epilepsy
- 7 (11 percent) said the sibling often is angry
The results underscore a need for educational resources and suggest more can be done to help siblings of children with epilepsy better understand and cope with the situation, said Dr. Kroner. That may include having the sibling go along when the child
with epilepsy visits the doctor, who can then alleviate some of their fears. Further, parents can reassure the unaffected sibling that the child with epilepsy does not feel pain during the seizure.
“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,” said Dr. Kroner.
The Seizures and Outcomes Study is being conducted at Children’s
National Medical Center, Washington D.C., under the direction of William Gaillard, M.D.