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

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

Berghammer, Malin, 1970- (author): Gothenburg University,Göteborgs universitet,Högskolan Väst,Avdelningen för omvårdnad - avancerad nivå,Sahlgrenska Academy, Institute of Medicine,BUV,Institutionen för medicin, avdelningen för molekylär och klinisk medicin,Centrum för personcentrerad vård vid Göteborgs universitet (GPCC),Institute of Medicine, Department of Molecular and Clinical Medicine,University of Gothenburg Centre for person-centred care (GPCC)

Brink, Eva, 1952- (author): Gothenburg University,Göteborgs universitet,Högskolan Väst,Avd för specialistsjuksköterskeutbildning,Centrum för personcentrerad vård vid Göteborgs universitet (GPCC),Institutionen för vårdvetenskap och hälsa,University of Gothenburg Centre for person-centred care (GPCC),Institute of Health and Care Sciences

Rydberg, Annika M (author): Umeå universitet,Pediatrik,University of Umeå, Department of Clinical Sciences, Pediatrics

Dellborg, Mikael, 1954 (author): Gothenburg University,Göteborgs universitet,Institutionen för medicin, avdelningen för molekylär och klinisk medicin,Institute of Medicine, Department of Molecular and Clinical Medicine

Ekman, Inger, 1952 (author): Gothenburg University,Göteborgs universitet,Institutionen för vårdvetenskap och hälsa,Institute of Health and Care Sciences

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2015-01-07
2015
English.
In: Congenital Heart Disease. - : Computers, Materials and Continua (Tech Science Press). - 1747-079X .- 1747-0803. ; 10:5, s. 403-412

Related links:: https://urn.kb.se/re...; show more...; https://doi.org/10.1...; https://urn.kb.se/re...; https://gup.ub.gu.se...; show less...

Journal article (peer-reviewed)

Abstract Subject headings

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.

Subject headings

MEDICIN OCH HÄLSOVETENSKAP -- Hälsovetenskap -- Omvårdnad (hsv//swe)
MEDICAL AND HEALTH SCIENCES -- Health Sciences -- Nursing (hsv//eng)
MEDICIN OCH HÄLSOVETENSKAP -- Klinisk medicin -- Kardiologi (hsv//swe)
MEDICAL AND HEALTH SCIENCES -- Clinical Medicine -- Cardiac and Cardiovascular Systems (hsv//eng)

Keyword

Adolescents and Young Adults
Univentricular Heart
Fontan Circulation
In-Depth Interviews
Phenomenological Hermeneutics
Lived Experience
Vårdvetenskap
Nursing science
Adolescents and Young Adults
Fontan Circulation
In-Depth Interviews
Lived Experience
Phenomenological Hermeneutics
Univentricular Heart

Publication and Content Type

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art (subject category)

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