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Adolescents with congenital heart disease: their opinions about the preparation for transfer to adult care.
Karolinska Institutet / Astrid Lindgren Children’s Hospital.
University of Gothenburg / The Queen Silvia Children’s Hospital.
Karolinska Institutet / Astrid Lindgren Children’s Hospital.
The Swedish Red Cross University College, Department of Technology and Welfare. Karolinska Intitutet.ORCID iD: 0000-0002-0221-8631
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2017 (English)In: European Journal of Pediatrics, ISSN 0340-6199, E-ISSN 1432-1076, Vol. 176, no 7, p. 881-889Article 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.

What is Known:

• Transition during adolescence and transfer to adult care for adolescents with CHD is complex, and there is a shift in roles.

• Adolescents often have poor knowledge and understanding about their heart condition and the consequences.

What is New:

• Adolescents call for disease specific information regarding health issues of importance for them in daily life.

• Communicating the disease with other is a challenge- peer support from other adolescents with CHD could be a facilitator.

Place, publisher, year, edition, pages
2017. Vol. 176, no 7, p. 881-889
Keywords [en]
Adolescents, Congenital heart disease, Focus group interviews, Transition
National Category
Nursing
Identifiers
URN: urn:nbn:se:rkh:diva-2411DOI: 10.1007/s00431-017-2917-9PubMedID: 28508990OAI: oai:DiVA.org:rkh-2411DiVA, id: diva2:1098596
Available from: 2017-05-24 Created: 2017-05-24 Last updated: 2018-04-12Bibliographically approved

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Nisell, Margret

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