The importance of family-centered care for children with congenital heart disease

Abstract

A child’s diagnosis and hospitalization for congenital heart disease not only affects the child, but also causes major changes in daily life and role fulfillment for the child’s family. Family members experience intense anxiety and stress during this chronic disease process, and parents often feel inadequate because their children need care. The family is the main source of support for the child. The family-centered care approach to children with congenital heart disease incorporates the principles of mutual participation, cooperation, information sharing, respect, and honor between the family, child, and health professionals during decision-making and care. This approach protects the bond between child and family, includes the family in the care process, and helps the child and family feel safe and competent throughout hospitalization and follow-up. This approach also enhances the family’s knowledge and skills related to management of the chronic disease, thereby supporting and strengthening parenting roles. A family-centered care approach enables the unique developmental needs of each child with congenital heart disease to be met effectively. This review aims to highlight the importance of the family-centered care approach for children with congenital heart disease.