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Committed to Life: Adolescents’ and Young Adults’ Experiences of Living with Fontan Circulation
University West, Department of Health Sciences, Section for nursing - graduate level. Sahlgrenska Academy, Institute of Medicine. (BUV)
University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.ORCID iD: 0000-0001-7804-0342
University of Umeå, Department of Clinical Sciences, Pediatrics.
Sahlgrenska Academy, Institute of Medicine.
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2015 (English)In: Congenital Heart Disease, ISSN 1747-079X, E-ISSN 1747-0803, Vol. 10, no 5, 403-412 p.Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
2015. Vol. 10, no 5, 403-412 p.
Keyword [en]
Adolescents and Young Adults, Univentricular Heart, Fontan Circulation, In-Depth Interviews, Phenomenological Hermeneutics, Lived Experience
National Category
Nursing
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
URN: urn:nbn:se:hv:diva-7256DOI: 10.1111/chd.12244ISI: 000362913400013Scopus ID: 2-s2.0-84943662715OAI: oai:DiVA.org:hv-7256DiVA: diva2:777149
Available from: 2015-01-08 Created: 2015-01-08 Last updated: 2017-12-05Bibliographically approved

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