Concerns and needs of children with epilepsy and their parents

Purpose: Having epilepsy often interferes with a child's and his or her family's quality of life, but specific concerns have not been explored. The purpose of the study was to explore in-depth the self-reported concerns and needs of children with epilepsy and their parents. Method: A focus group methodology was used with 2 child groups and 2 parent groups. Data Analysis: Themes were independently identified by each investigator, who then met to discuss the themes until 100% agreement was reached. Results: Child themes included "talking at my level" and "feeling different from others." Parent themes included "difficulties, struggles and problems," "need for information," and "fears and concerns." Conclusion: Findings from this study suggest that attention needs to be directed to assessing informational and emotional support needs during the diagnostic process. Ongoing assessment is also necessary because children and parents have continuing needs beyond the initial encounter with healthcare professionals.