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

Research output: Contribution to journalArticle

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.(Table presented.)

Details

Authors
  • Åsa Burström
  • Ewa-Lena Bratt
  • Björn Frenckner
  • Margret Nisell
  • Katarina Hanséus
  • Annika Rydberg
  • Maria Öjmyr-Joelsson
External organisations
  • Karolinska Institutet
  • Karolinska University Hospital
  • University of Gothenburg
  • Queen Silvia Children’s Hospital
  • Skåne University Hospital
  • Umeå University
Research areas and keywords

Subject classification (UKÄ) – MANDATORY

  • Health Care Service and Management, Health Policy and Services and Health Economy

Keywords

  • Adolescents, Congenital heart disease, Focus group interviews, Transition
Original languageEnglish
Pages (from-to)881-889
JournalEuropean Journal of Pediatrics
Volume176
Issue number7
Publication statusPublished - 2017
Publication categoryResearch
Peer-reviewedYes
Externally publishedYes