Family Transitions in Congenital Heart Disease Management: The Impact of Hospitalization in Early Adulthood

With advances in medical and surgical management of congenital heart disease (CHD), it is becoming more common for patients to survive into adulthood. This article reviews family management of CHD over the life course of the disease and presents the findings of a study of the psychosocial needs of hospitalized adults with CHD and their families. Thirty-four patients, family members, and nurses were interviewed for their perceptions of the hospital experience. Hospitalization was characterized by differing expectations of care between participant groups, resulting in conflict, tension, and dissatisfaction. This dissonance in care had a negative impact on individual and family transitions in illness management. The data suggest that family-centered standards of nursing practice based on an understanding of both the physical and psychosocial effects of CHD on adults are needed.