Children with medical complexity in the emergency department: Parent experiences and information needs

Background: Children with complex medical needs constitute a growing number of pediatric patients that utilize the emergency department, disproportionately more than children outside of this category. Our objective for this qualitative study was to explore information needs and experiences of parents accessing emergency health care for their child with medical complexity. Methods: Qualitative description guided this study. Parent participants were recruited via purposive sampling and individually interviewed within a pediatric specialty clinic at a Canadian pediatric tertiary care center. Inductive content analysis organized interview data from parents. Results: Nine, 60-90 min individual interviews were conducted with parents of a child with medical complexity; four content categories emerged: How the emergency department is different for children with medical complexity, parents as key care coordinators, emergency department experience and resilience, and communication and learning preferences. Conclusion: These families openly shared their experience with pediatric emergency care. Strategies to support transfer of pertinent health information for children with complex medical needs are needed in the emergency department. Interviews with parents of children with complex medical needs provided key insights to inform and improve the care provided in the emergency department for this growing population of children.