Abstracts

Rationale: There is no literature that addresses internet utilization for information and support by parents of children with epilepsy, although there is research on internet utilization in other paediatric populations. The purpose of this study was to determine the internet utilization patterns of parents of children with epilepsy, including factors such as web sites accessed, purpose of seeking information, how the information related to parental medical decision-making, and use of online support communities. Methods: A cross sectional prospective survey of parents of children with epilepsy was conducted between June - August 2008. The participants were parents attending an epilepsy clinic at an academic pediatric health sciences center (Hospital for Sick Children) in Toronto, Canada. Questionnaires (45 questions) were completed anonymously by parents using an online web-based survey designed for this study. Descriptive statistics were used to analyze the data. Further analysis of data is being completed using ANOVA to test for differences between responses of various subsets of the survey sample. In addition discriminant analysis will be used to determine the ability to predict membership in various groups that are obtained from the responses. Results: All families approached completed the survey (153 respondents). The majority (67%) were completed by mothers. Evaluation of the survey responses showed the following results. A variety of internet sites were accessed with epilespy.com being the most common (56.6%). The majority of parents (76.4%) used the internet to look for information on epilepsy and 78.8% of parents sought information at the time of their child's diagnosis. Most parents (87%) sought information on their child's epilepsy type while 46.1% were wanted information on complementary therapies. Only 54.2% of parents reported that the information they found helped them make treatment decisions for their child. Only 19.8% of parents were seeking online support groups for families with children who have epilepsy. Conclusions: The majority of parents who utilized the internet sought supplemental information but few sought online support communities. Most parents found information about epilepsy on the internet to be helpful but only used the information to supplement the information they received from their child’s health care provider. Parents frequently reported that the information they found on the internet was similar to the information they received from their child’s health care team. This study is of importance as health care providers must be aware of the frequent use of the internet as a source of information by parents. It is important for health care providers to become familiar with the information parents seek on the internet and to participate in directing families to reliable sites that can enhance parental understanding of the information provided in the clinical setting. A multi-center, international study is planned to determine if these findings from a single Canadian center are consistent in countries with different systems of health care delivery.