Childhood epilepsy: Failures along the path to diagnosis and treatment

Despite the importance of early diagnosis in childhood epilepsy, few published studies address the process of the child’s entry into the health care system. The purpose of this article is to describe parental accounts of the diagnostic process and corresponding treatment for their children. We interviewed 21 parents of children who had both epilepsy and significant learning problems using semistructured open-ended interviews. During the interview, we asked parents to describe their child’s medical history. Qualitative data analysis techniques were used to analyze the interviews. They revealed three system failures where the recognition and treatment of epilepsy fall short of an ideal diagnostic trajectory: (1) parents not seeking treatment for their child’s epilepsy, (2) health care providers not recognizing seizures, and (3) health care providers not making accurate diagnoses or initiating inappropriate treatment. This study provides a foundation on which to build future studies.