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Adolescents’ with congenital heart disease and their parents’ experiences of a nurse-led transition program – an interpretive phenomenological study

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Thomet, C.; Lindenberg, C.; Schwerzmann, M.; Spichiger, E.

Background: Up to 90 % of patients with congenital heart disease (CHD) now reach adulthood. To avoid lapses in care during the change from pediatric to adult care, a nurse-led transition program (TP) was implemented at a Swiss University Hospital. Aim: This study explored the experiences and expectations of adolescents with CHD and their parents regarding a nurse-led TP. Method: This qualitative study used an interpretive, phenomenological approach. Individual interviews were conducted with seven adolescent CHD patients in the transition period and their parents (six mothers, two fathers). Analysis followed an iterative process. Results: For most study participants, the transfer from pediatric to adult medicine as part of the TP went smoothly. They experienced the TP positively. Patients valued the provision of a constant contact person to provide CHD-related information; parents welcomed the support of an informed, neutral clinician for their children. To varying degrees, adolescents were willing to take over self-responsibility; conversely, parents found it difficult to turn their responsibility over to their children. Parents wished to give the adolescent as much time as needed to act responsibility on their own. Conclusions: A transition program is a key element for establishing a continuous care in adolescents with a chronic disease. It facilitates the parents’ process of allowing their youths to assume increasing responsibility for their own health.

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