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

Journal article
Authors Åsa Burström
Ewa-Lena Bratt
Björn Frenckner
Margret Nisell
Katarina Hanseus
Annika Rydberg
Maria Öjmyr-Joelsson
Published in European Journal of Pediatrics
Volume 176
Issue 7
Pages 881-889
ISSN 0340-6199
Publication year 2017
Published at Institute of Health and Care Sciences
Pages 881-889
Language en
Links https://doi.org/10.1007/s00431-017-...
https://gup.ub.gu.se/file/207013
Subject categories Nursing

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 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.

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