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

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Berghammer, Malin,1970-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) (author)

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

Article/chapterEnglish2015

Publisher, publication year, extent ...

2015-01-07
Computers, Materials and Continua (Tech Science Press),2015
printrdacarrier

Numbers

LIBRIS-ID:oai:DiVA.org:hv-7256
https://urn.kb.se/resolve?urn=urn:nbn:se:hv:diva-7256URI
https://doi.org/10.1111/chd.12244DOI
https://urn.kb.se/resolve?urn=urn:nbn:se:umu:diva-111157URI
https://gup.ub.gu.se/publication/211475URI

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Language:English
Summary in:English

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SwePubSwePub

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Subject category:ref swepub-contenttype
Subject category:art swepub-publicationtype

Notes

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 and genre

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
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

Added entries (persons, corporate bodies, meetings, titles ...)

Brink, Eva,1952-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(Swepub:gu)xbrine (author)
Rydberg, Annika MUmeå universitet,Pediatrik,University of Umeå, Department of Clinical Sciences, Pediatrics(Swepub:umu)anry0014 (author)
Dellborg, Mikael,1954Gothenburg University,Göteborgs universitet,Institutionen för medicin, avdelningen för molekylär och klinisk medicin,Institute of Medicine, Department of Molecular and Clinical Medicine(Swepub:gu)xdelmi (author)
Ekman, Inger,1952Gothenburg University,Göteborgs universitet,Institutionen för vårdvetenskap och hälsa,Institute of Health and Care Sciences(Swepub:gu)xekmin (author)
Högskolan VästAvdelningen för omvårdnad - avancerad nivå (creator_code:org_t)

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In:Congenital Heart Disease: Computers, Materials and Continua (Tech Science Press)10:5, s. 403-4121747-079X1747-0803

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