Abstracts

Parents of children diagnosed with epilepsy worry and their concerns evolve throughout the course of the condition. Children also have their own set of concerns. To educate parents and their children effectively about epilepsy, information should be provided within the context of their needs at the time of diagnosis. Condition specific groups that address universal and specific concerns may help to increase knowledge and allay worries.
113 families, in groups, attended a two-hour New Onset Seizure educational clinic (NOC), within 6-8 months of their child[rsquo]s initial diagnosis of epilepsy. 65 parents of the 113 families completed a mailed questionnaire about worries and concerns with 8 questions, 7 yes-no and 1 rating level of worry ([italic]10[/italic]=most). 30 children (ages 5-10) also returned an open-ended questionnaire. Information gathered helped address their concerns and worries. Following the NOC, attendees completed a 7-question evaluation ranking their level of understanding on a 5-point scale, from strongly disagree ([italic]1[/italic]) to strongly agree ([italic]5[/italic]).
58% of the 65 returned their mailed questionnaire, rating their level of worry as [italic]7-10 [/italic](30% selected [italic]10)[/italic]. 72% described their child[rsquo]s seizure but only 32% identified its medical name. 74% were concerned that the seizures would affect their child[rsquo]s ability to learn and/or behavior. 52% did not know the medication side effects to monitor or how the medication worked. 67% believed their child[rsquo]s activities would need to be restricted. 43% were uncomfortable explaining seizures to their child. 55% felt that other family members would have difficulty adjusting to their child[rsquo]s condition. An open-ended question about other concerns led to 49 different responses. The most prevalent concerns in order of frequency were medication effects, ability to outgrow seizures, psychological impact of seizures, drug interactions, dealing with schools and teachers, and what causes and increases seizures. 113 families completed a training evaluation. The following percentages of parents rated [italic]4 or 5[/italic] (strongly agree) to a better understanding of: seizure recognition (90%); the effect of seizures on activities and safety (92%); what to do the when their child has a seizure (89%). 99% would recommend the program to other parents. Children worried about death, feeling different, the uncertainty of when a seizure would occur and where and how to tell others, peer[apos]s reactions, being picked on, blood work, would they stop breathing during a seizure and if their parents would leave.
Condition specific educational groups for parents of similar aged children with epilepsy can increase knowledge and allay worries when relevant concerns are addressed. A questionnaire can highlight these concerns to assist with teaching. Evaluations can provide feedback regarding the parents[rsquo] level of understanding.