Transfer to Adult Care--Experiences of Young Adults with Congenital Heart Disease

J Pediatr Nurs. 2015 Sep-Oct;30(5):e3-10. doi: 10.1016/j.pedn.2015.05.025. Epub 2015 Jul 19.

Abstract

More than 90% of children born with congenital heart disease survive into adulthood due to successes of cardiac surgery and medical management. Interviews with 16 young adults with congenital heart disease to explore their experiences of transfer from pediatric to adult care were performed. The analysis identified five themes; Feeling secure during the transfer process, Experiencing trust in the care, Expecting to be involved, Assuming responsibility for one's health is a process and Lack of knowledge leads to uncertainty. In conclusion; a structured and gradual transfer process was necessary to enable the informants to shoulder the responsibility for self-care.

Keywords: Congenital heart disease; Experiences; Transfer to adult care; Transition; Young adults.

MeSH terms

  • Disease Management
  • Female
  • Heart Defects, Congenital / diagnosis
  • Heart Defects, Congenital / psychology
  • Heart Defects, Congenital / therapy*
  • Humans
  • Infant, Newborn
  • Interviews as Topic
  • Male
  • Nurse-Patient Relations
  • Patient Safety / statistics & numerical data*
  • Physician-Patient Relations
  • Qualitative Research
  • Quality of Life*
  • Risk Assessment
  • Sampling Studies
  • Sweden
  • Transition to Adult Care / organization & administration*
  • Young Adult