Abstracts

Children with epilepsy and mild mental retardation (MMR) and their families are at risk for significant quality of life problems but the nature of these problems has not been examined. Greater understanding is necessary before effective interventions can be designed to help these children and their families. The purpose of this study is to identify and examine the specific problems experienced by children with epilepsy and MMR and their families. We invited parents to participate in the study if they had a child with a diagnosis of epilepsy and MMR (IQ between 55 and 75) and who was between the ages of 8 and 16. Twenty parents of children with epilepsy and MMR were interviewed using a semi-structured open-ended interview guide to explore specific problems regarding school, community, medical community, and child/family. The interviews were tape-recorded and transcribed verbatim. Qualitative data analysis was completed using a code start list of school, child/family, community and medical community. Categories were established and data were compared within categories to identify themes. Qualitative data analysis identified problems in general areas, which were 1) communication at school, 2) need for information, and 3) child and family. The central theme regarding schools was a disconnect between the schools[apos] goals and the parents[apos] goals for their children. The central theme regarding the medical community included need for information about the seizure condition and behavior management. The central theme regarding children and family included behavior problems, concern about their children[apos]s self-esteem and socialization. An overriding concern of parents was uncertainty about what the future held for their children. Analysis of the interviews pointed out problems affecting both children and families. This study provides a foundation for better understanding these problems and for developing interventions to address them. (Supported by NR 04536 and NR 005035)