ABSTRACT
Advances in medical management and surgical treatment have improved the longevity and quality of life for patients with CHD. However, meeting the health care needs of this growing population has not kept pace with the advances in technology. Adolescents with CHD are caught between both childhood and adulthood and pediatric and adult cardiology. As health care providers develop strategies to meet the special health care transition needs of this group, patient and family perspectives must be understood and included in the transition plan if one is to develop meaningful interventions. Assessment and recognition of the developmental changes occurring for both adolescents and their families and the impact of chronic illness on these changes are critical if transition is to be successful. Expectations,individual biases, and negative stereotypes need to be recognized and reframed if one is to establish an empathetic, positive, and trusting relationship with patients and their families. Greater sensitivity also needs to be given to the shifting roles, responsibilities, and inherent losses that occur with transition. Nurses have a key role in guiding patients and families toward adult, independent self-care by helping them identify and use their talents and resources as they move toward achieving their goals and dreams for the future.
Subject(s)
Adaptation, Psychological , Continuity of Patient Care , Heart Defects, Congenital/nursing , Patient Care Planning , Patient Education as Topic , Adolescent , Adult , Heart Defects, Congenital/psychology , Heart Defects, Congenital/therapy , Human Development , Humans , Parents/psychology , United StatesABSTRACT
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.
