Hospital Experiences of Young Adults With Congenital Heart Disease: Divergence in Expectations and Dissonance in Care

Abstract

• Background Despite increasing survival for adults with congenital heart disease, little is known about hospitalization for young adult patients with this disease and for their families. Because of the complexity of the disease and its management during the life span, young adults are often hospitalized on both pediatric and adult units during a stay in the hospital. • Objectives To explore the experience of hospitalization of young adults with congenital heart disease, the experience of their families, and the views of the nurses who cared for these patients and to generate substantive theory on interactions between patients, patients’ families, and nurses. • Methods Semistructured interviews and naturalistic observations were conducted with young adults with congenital heart disease (mean age, 28.6 years), their family members, and nurses who cared for the patients during hospitalization (N = 34). Dimensional analysis was used to analyze interviews and field notes from observations. • Results A grounded theory was derived, explaining how the hospital context and relationships between patients, patients’ families, and nurses affect patients’ hospital experiences. Expectations differed among the groups, leading to dissonance in care, as exemplified by role confusion and power struggles over control of care. This dissonance resulted in interpersonal conflict, distrust, anxiety, and dissatisfaction with the care and caring experiences. • Conclusions Changes in hospital units, a better understanding of the healthcare needs of young adults with congenital heart disease, and acknowledgment of the expertise of patients and patients’ families are needed to improve nursing care for these patients and their families.