Abstracts

Rationale: Previous research has shown that parents of children experiencing their first seizure or newly diagnosed with epilepsy have high needs for information and many worries about seizures and epilepsy. Although written materials are a common method of providing information to families with epilepsy the impact on knowledge and concerns has not been evaluated. The goal of this study was to determine the impact of written information on parent's knowledge and concerns about epilepsy. Methods: Data collection is ongoing for 150 parents of children with epilepsy. To date 104 parents have been recruited and completed 3 questionnaires: Knowledge of Epilepsy (KOE), Parent Concerns About Seizures Scale (Sz Concerns) and Parent Seizure Management Concerns Scale (Management Concerns). Parents were eligible to participate if their child had at least one seizure which was not febrile or non-epileptic. Some parents had recently received a newly developed educational booklet about seizures. Data was entered into SPSS version 17. Group comparisons were made using a t-test and ANOVA analysis. Results: Participants included: mothers (75), fathers (29), other caregivers (9). Child demographics: male (58), female (55); current age (mean=9 yrs., +5.28); duration of epilepsy (mean=4.58 yrs., +4.52); seizure frequency: daily (22.1%), weekly (15%), monthly (13.3%), < monthly (41.6%), seizure free (8%). 19 children were newly diagnosed and 94 had established epilepsy. 18 of 26 parents who received the educational booklet had read all or part of it. There was no significant difference between KOE (p=0.350) and Sz Concerns scores (p=0.318) of participants who read the booklet and those who did not. Management Concern scores were lower in the group that read the booklet (p=0.010). Longer duration of epilepsy was associated with higher KOE scores (p=0.031), fewer Sz Concerns (p=0.015) and Management Concerns (p=0.013). Parents of children with newly diagnosed epilepsy showed similar scores to those with established epilepsy (KOE p=0.065, Sz Concerns p=0.473, Management Concerns p=0.506). On visual inspection of the data we noted that knowledge and concerns did not significantly improve until children had epilepsy for at least 10 years. Conclusions: Our results suggest that written information does not significantly improve parent's knowledge or improve their concerns about epilepsy. Duration of epilepsy does impact knowledge and concerns about epilepsy, however, these differences are only apparent several years after onset. Further investigation into how providers can impact parent's knowledge and concerns about epilepsy is needed as the current standard of providing written information is not effective. Novel ideas for engaging parents in learning about epilepsy are needed.