title: Committed to Life: Adolescents' and Young Adults' Experiences of Living with Fontan Circulation.
abstract: 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.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Institute of Medicine, Sahlgrenska Academy, Gothenburg, Sweden.|Centre for Person-Centred Care, University of Gothenburg, Gothenburg, Sweden.|Institute of Caring, Health and Culture, University West, Trollhättan, Sweden.
authors.forename: Malin C
authors.initials: MC
authors.lastname: Berghammer
authors.affiliation: Centre for Person-Centred Care, University of Gothenburg, Gothenburg, Sweden.|Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.|Institute of Caring, Health and Culture, University West, Trollhättan, Sweden.
authors.forename: Eva
authors.initials: E
authors.lastname: Brink
authors.affiliation: Department of Clinical Sciences, Pediatrics, University of Umeå, Umeå, Sweden.
authors.forename: Annika M
authors.initials: AM
authors.lastname: Rydberg
authors.affiliation: Institute of Medicine, Sahlgrenska Academy, Gothenburg, Sweden.|Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Gothenburg, Sweden.
authors.forename: Mikael
authors.initials: M
authors.lastname: Dellborg
authors.affiliation: Centre for Person-Centred Care, University of Gothenburg, Gothenburg, Sweden.|Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
authors.forename: Inger
authors.initials: I
authors.lastname: Ekman
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000294:Adolescent Behavior; D000328:Adult; D017281:Cost of Illness; D004644:Emotions; D005260:Female; D018729:Fontan Procedure / Q000009:adverse effects / Q000523:psychology*; D006330:Heart Defects, Congenital / Q000175:diagnosis / Q000503:physiopathology / Q000523:psychology / Q000601:surgery*; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D010166:Palliative Care; D011788:Quality of Life; D012649:Self Concept; D016896:Treatment Outcome; D055815:Young Adult
keywords: Adolescents and Young Adults; Fontan Circulation; In-Depth Interviews; Lived Experience; Phenomenological Hermeneutics; Univentricular Heart