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Committed to Life: Adolescents' and Young Adults' Experiences of Living with Fontan Circulation

Journal article
Authors Malin Berghammer
Eva Brink
Rydberg Annika
Mikael Dellborg
Inger Ekman
Published in Congenital Heart Disease
Volume 10
Issue 5
Pages 403-412
ISSN 1747-079X
Publication year 2015
Published at University of Gothenburg Centre for person-centred care (GPCC)
Institute of Health and Care Sciences
Institute of Medicine, Department of Molecular and Clinical Medicine
Pages 403-412
Language en
Keywords Adolescents and Young Adults, Fontan Circulation, In-Depth Interviews, Lived Experience, Phenomenological Hermeneutics, Univentricular Heart
Subject categories Nursing


BACKGROUND: Single ventricle defects are among the most complex congenital heart defects and the development of advanced surgical procedures in recent decades has created the first generation of adolescents and young adults living with this condition. Yet little is known about how these individuals experience life and what impact the heart defect has on their life in general. OBJECTIVE: The aim was to illuminate and gain a deeper understanding of adolescents' and young adults' experiences of living with a surgically palliated univentricular heart. DESIGN: Seven open-ended in-depth interviews were conducted, transcribed, and analyzed according to the henomenological hermeneutical method. All adolescents and young adults operated before 1995 according to the Fontan procedure or the total cavo-pulmonary connection procedure at one pediatric cardiology unit were included in the study. They were 17-32 years of age (median age 22 years). RESULTS: The interpretation of the interview transcripts showed that the participants experienced living with a surgically palliated univentricular heart in terms of feeling exceptional, strong, and healthy. This was supported by two structural analyses, where three themes emerged: happiness over being me, focusing on possibilities, and being committed to life. CONCLUSION: Living with a Fontan circulation included negative experiences but the analyses clearly demonstrated a feeling of being strong and healthy. An appreciation of having survived and being committed to life was found to be an integral part of the development of the interviewees' existential growth. This probably strengthens them further in their ability to balance expectations and hurdles in life. This study provides valuable insights into the experience of patients after the Fontan procedure and the importance of a positive health care environment throughout their lives.

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