Seizures in infants and young children: an exploratory study of family experiences and needs for information and support.

An exploratory study of the experiences of parents caring for young children with seizure disorders and their perceived needs for information and support was conducted. A questionnaire and interview protocol was designed to elicit information about the child's seizure history, child and parent health history, medical and support services, child and family demographic information, parent experiences in caring for a young child with seizures, and perceptions about needs for information and support. Interviews were conducted with 31 parents who were recruited from a pediatric neurology clinic at a university hospital. Interviews were audiotaped, transcribed, and analyzed for major themes. The study revealed a broad range of experiences in caring for young children with seizures, and the early onset and severity of seizures often influenced these experiences. Obtaining information that was easily accessible and helped them to better understand their child's diagnosis and treatment was a challenge reported by many parents. In addition, interviews revealed that parents felt a need for support and information from individuals who were knowledgeable about the medical, developmental, emotional, and family issues related to coping with seizures in infants and young children. Recommendations for a comprehensive approach to the management of seizures for infants and young children are proposed, with particular focus on the role of nurses and early intervention professionals in providing information and support to families.