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

Forskningsoutput: TidskriftsbidragArtikel i vetenskaplig tidskrift

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.)

Detaljer

Författare
  • Åsa Burström
  • Ewa-Lena Bratt
  • Björn Frenckner
  • Margret Nisell
  • Katarina Hanséus
  • Annika Rydberg
  • Maria Öjmyr-Joelsson
Externa organisationer
  • Karolinska Institute
  • Karolinska University Hospital
  • Göteborgs universitet
  • Queen Silvia Children’s Hospital
  • Skåne University Hospital
  • Umeå University
Forskningsområden

Ämnesklassifikation (UKÄ) – OBLIGATORISK

  • Hälso- och sjukvårdsorganisation, hälsopolitik och hälsoekonomi

Nyckelord

Originalspråkengelska
Sidor (från-till)881-889
TidskriftEuropean Journal of Pediatrics
Volym176
Utgåva nummer7
StatusPublished - 2017
PublikationskategoriForskning
Peer review utfördJa
Externt publiceradJa