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Adolescents with congenital heart disease : their opinions about the preparation for transfer to adult care

Burström, Åsa; Bratt, Ewa-Lena; Frenckner, Björn; Nisell, Margret; Hanséus, Katarina LU ; Rydberg, Annika and Öjmyr-Joelsson, Maria (2017) In European Journal of Pediatrics p.1-9
Abstract

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... (More)

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.(Table presented.)

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author
publishing date
type
Contribution to journal
publication status
in press
subject
keywords
Adolescents, Congenital heart disease, Focus group interviews, Transition
in
European Journal of Pediatrics
pages
9 pages
publisher
Springer
external identifiers
  • scopus:85019185068
ISSN
0340-6199
DOI
10.1007/s00431-017-2917-9
language
English
LU publication?
no
id
c661b831-1665-4d42-8971-56ec0b4dd227
date added to LUP
2017-06-12 15:28:22
date last changed
2017-06-21 13:37:39
@article{c661b831-1665-4d42-8971-56ec0b4dd227,
  abstract     = {<p>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.(Table presented.)</p>},
  author       = {Burström, Åsa and Bratt, Ewa-Lena and Frenckner, Björn and Nisell, Margret and Hanséus, Katarina and Rydberg, Annika and Öjmyr-Joelsson, Maria},
  issn         = {0340-6199},
  keyword      = {Adolescents,Congenital heart disease,Focus group interviews,Transition},
  language     = {eng},
  month        = {05},
  pages        = {1--9},
  publisher    = {Springer},
  series       = {European Journal of Pediatrics},
  title        = {Adolescents with congenital heart disease : their opinions about the preparation for transfer to adult care},
  url          = {http://dx.doi.org/10.1007/s00431-017-2917-9},
  year         = {2017},
}