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Adolescents with congenital heart disease: their opinions about the preparation for transfer to adult care
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2017 (English)In: European Journal of Pediatrics, ISSN 0340-6199, E-ISSN 1432-1076, Vol. 176, no 7, 881-889 p.Article in journal (Refereed) Published
Abstract [en]

The aim of the study was to explore what adolescents with congenital heart disease (CHD) view as important in the preparation for the transfer to adult care. We performed interviews in four focus groups with adolescents (14-18 years old) at four university hospitals in Sweden. Data was analysed using qualitative content analysis. The analysis revealed one main category; Becoming a manager of the condition and four subcategories; Sufficient knowledge about the health, Be a participant in the care, Parental support, and Communicate with others about the health. The adolescents' ages differentiated the discussion in the groups. The older adolescents seemed to have more interest in transition planning, information and transfer. The younger described more frustrations about communication and handling the disease. Conclusion: To become a manager of the CHD in daily life, the adolescents want disease specific knowledge, which should be communicated in a developmentally appropriate way. Adolescents want to participate and be involved in the transition process. They need support and guidance in how to communicate their CHD. Parental support is fundamental but it change over time. Moreover, peer-support is becoming more significant during the transition process.

Place, publisher, year, edition, pages
Springer, 2017. Vol. 176, no 7, 881-889 p.
Keyword [en]
Congenital heart disease, Transition, Adolescents, Focus group interviews
National Category
Pediatrics
Identifiers
URN: urn:nbn:se:umu:diva-137615DOI: 10.1007/s00431-017-2917-9ISI: 000403771700006PubMedID: 28508990OAI: oai:DiVA.org:umu-137615DiVA: diva2:1121309
Available from: 2017-07-10 Created: 2017-07-10 Last updated: 2017-07-10Bibliographically approved

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Rydberg, Annika
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CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf