Abstracts

Rationale: In children presenting with a presumed first seizure, to determine: (1)medical information provided to children and families, (2) level of satisfaction with the information provided and (3) what children and families know about seizures before their visit to the First Seizure Clinic. Methods: Children were identified through the First Seizure Clinic at the Alberta Children’s Hospital. Included were children ages 3 to 17 years with an unprovoked first afebrile seizure. Prior to the visit with the physician, the parent completed the Nursing Parent First Seizure Questionnaire. This questionnaire included an inquiry regarding sources of information both suggested and sought by families as well as satisfaction with these sources. A true/false section was included to assess basic understanding of seizures and epilepsy with questions focusing on stigma and safety.Results: Thirty-one families participated in the study. All families were referred from the Emergency Department. Family responses regarding information sources included: oral information 16 (64%), no information 9 (36%), combination of handouts/pamphlets and spoken information 1 (4%) and no response 1 (4%). Of the 17 families who received information, 11 (64%) were satisfied. 18 (72%) families stated they were not directed to further information sources. 21 (84%) of all parents sought further information including: combination of sources 12 (57%), internet 5 (24%), other medical resources 3 (14%) and 1 (5%) did not respond. Of these, 16 (76%) were satisfied with the information they found, and 5 (24%) were not satisfied. In 12 families (48%) the diagnosis of seizure was discussed with them. Seven (28%) families received seizure recognition information. 11 parents (44%) were provided information about first-aid. With regards to seizure knowledge, parents had a mean score of 69% on safety questions and 91% on stigma questions. Conclusions: A significant portion of parents received no information regarding their child’s seizure. The majority of families were not directed to further information sources however most did seek additional resources. We did not assess reliability or validity of these resources. Although family knowledge with regard to seizures was generally good, it is concerning that families had significantly greater knowledge regarding stigma compared to safety. This points to the importance of providing comprehensive and accurate seizure information. We must work with our front line colleagues to implement this practice.