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

European Journal of Pediatrics
Åsa BurströmMaria Öjmyr-Joelsson

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. 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 transi...Continue Reading

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Citations

Sep 27, 2018·International Journal of Adolescent Medicine and Health·Karin du PlessisYves d'Udekem
Mar 6, 2019·European Journal of Cardiovascular Nursing : Journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology·Mariela Acuña MoraEwa-Lena Bratt
Sep 24, 2020·Journal of Pediatric Nursing·Maureen VartyKatherine Patterson Kelly
Aug 17, 2021·Cardiology in the Young·David LiddleYue-Hin Loke

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