Abstracts

Rationale: The ketogenic diet (KD), although effective in treating intractable epilepsy, poses demands on the family system. Research has identified siblings' negative feelings towards epilepsy. No study to date describes siblings’ perceptions & feelings about KD. Hypothesis : The KD may significantly impact the sibling. Objective: To qualitatively analyze siblings’ perceptions and feelings about the KD, and to identify main themes for use in future prospective study. Methods: Inclusion Criteria: Healthy siblings of children requiring KD for intractable epilepsy at McMaster Children’s Hospital from August 2004 – May 2007. A data abstraction form was used to collect patient demographics, epilepsy syndrome, type of diet and seizure frequency. Age of siblings and general health status were also recorded. Siblings were interviewed by a Child Life Specialist prior, during and/or after initiation of the KD. Siblings own words were captured and analyzed for main themes.Results: 13 siblings (aged 2.5-13 yrs; mean 7 yr 4 mo) of 9 patients (aged 9 mo-15 years, mean 5 yr 6 mo) with intractable epilepsy were interviewed. 10 were older siblings. 7 patients had started the KD and 2 awaited initiation. 71% of the patients on the KD had >50% seizure control. Main themes identified for the siblings were: 1) Impact of the KD on daily life (“My brother gets all the attention,” age 4.5; “I have to eat in a different room. It’s not fair,” age 6.5; “This diet will make him mad,” age 6.5; “We hardly get to do family things because of all the work it takes to get him ready. The diet is just going to add more work that I am going to have to do. We probably won’t get to go anywhere now,” age 11; “What will he do at Christmas? He will be so mad if he can’t eat all the food & the pie,” aged 6.5). 2) Expectations of the diet (“I don’t think he will be able to stick to it,” age 4.5; “It will make her big sick go away,” age 3.5; “… no more medication, no more seizures, no more falling and goose eggs … her back to normal and not so tired,” age 8). 3) Misconceptions of the KD (“The food is weird and will make him in a bad mood and won’t he get fat?' age 6.5; “It won’t work because my brother loves bread,” age 10; “He has to eat something that my mom puts in her coffee? You aren’t suppose to eat that,” age 11). 4) Feelings about the diet (“What if it doesn’t work? Then what?” age 12; “Mom told my friends about his food. I was embarrassed because they thought the food looked weird,” age 6.5; “I am worried that kids at school may give her food that she is not supposed to have,” age 8; “Now I am mad that I am going to have so much more work to do. I will have to help my mom prepare the food,” age 11). Conclusions: Siblings have strong feelings about the KD, the majority of which appear to be negative (worry, skepticism, feelings of inequality). Misconceptions about the KD appear to be common. Anticipatory cognitive therapy could be beneficial in helping siblings cope with the changes necessary for the KD. These data will be utilized for a future prospective study