Parents and families as partners in the care of pediatric cardiology patients

Abstract

The concept of patient- and family-centered care has its roots deep in the movement to improve care for special-needs children and in the tradition of pediatricians working with the families of their patients. Parents of pediatric cardiology patients can play a significant role in their children's care and often act as quarterbacks by coordinating multiple specialists and treatments in a system that can be fraught with hazards and poor communication. The medical system provides few tools to aid parents in this “partnership” process. We propose that parents be given specific resources to help them navigate the healthcare system and thereby provide better support for their children, and that pediatric cardiologists and their staffs use the principles of patient- and family-centered care to help parents become more effective advocates for their children.