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.

Experiences and Outcomes of Transition from Pediatric to Adult Health Care Services for Young People with Congenital Heart Disease: A Systematic Review

“…After the removal of duplicates, 7046 articles remained, which were screened for eligibility. Thirteen papers were included in the review: six reported outcomes of transfer for young people with CHD, six reported experiences of transfer and transition among young people, parents, or health professionals, and one paper reported both outcomes and experiences and was therefore included in both syntheses.…”

“…The seven papers exploring experiences of transfer and transition are summarized in Table . Two of the studies were conducted in Canada, two in the US, one in Belgium, one in the UK, and one in both the US and Europe . Two studies employed qualitative designs, a further two were mixed methods, and three were quantitative .…”

The impact of actual and perceived disease severity on pre-operative psychological well-being and illness behaviour in adult congenital heart disease patients

“…3 The literature on psychological problems and the life experiences of this population outlines that the patients' most difficult moments can occur during hospitalisation. 4,5 However, the ratings of the patients' psychological state are often recorded after the patient is discharged from the hospital.…”

Types of social supports predicting health-related quality of life among adult patients with CHD in the Institut Jantung Negara (National Heart Institute), Malaysia

“…33,34 During transition periods, informational support is given to help them understand the progression of their disease, the impact of the changes they are experiencing, types of procedures, and medications. [33][34][35] Nevertheless, if the information provided by medical staffs, parents, or relevant parties is inconsistent, it will create more confusion. 35 If patients face physical limitations or are in a deficit stage, tangible supportbehaviour assistance and material aidwould be needed in escalating physical recovery; 33,34 however, patients with chronic illness, at times, might refuse social supportemotional/ informational and tangible supportsfrom others as they do not want to be obliged, controlled, or be a burden to their caregivers.…”