Improving cardiac care quality and safety through partnerships with patients and their families

The role of patients, families, and medical providers to improve outcomes for children with cardiac disease continues to evolve over time. Healthcare organizations are struggling to involve patients in meaningful ways and learn from their experience. Participation by parents and families is critical to achieving optimal medical care for pediatric cardiac patients. Confusion about the roles of patients, clinicians, and information transparency, can lead to a loss of continuity and a lack of adherence to medical therapies. This can result in poor outcomes for children with chronic illnesses such as congenital cardiac disease. This article aims to overview and clarify the roles and responsibilities of the patient and their family in helping to improve outcomes for children with congenital cardiac disease. We discuss general principles of family centered care, adherence, and transition of care for young adults with chronic illness. We propose goals and delineate key elements for optimal outcomes for congenital cardiac patients and lifelong wellness. There are steps that hospitals can take to optimize the contribution of the parent and family. Organizations can go beyond mainstream frameworks for quality improvement by fostering patient-centered care and create higher quality and value for their patients and their communities.