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Living with half a heart--experiences of young adults with single ventricle physiology: a qualitative study

Dorthe Overgaard1, Catriona King, Rie F Christensen

  • 1Heart Centre, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark. dorthe@overgaard.mail.dk

The Journal of Cardiovascular Nursing
|May 29, 2012
PubMed

Insights

Young adults with single ventricle physiology (SVP) aim for control over their condition. They need external support beyond family to navigate challenges and achieve normal life experiences.

Area of Science:

  • Cardiology
  • Psychology
  • Sociology

Background:

  • Single ventricle physiology (SVP) affects approximately 3% of children with congenital heart disease.
  • Improved medical care has increased survival rates for SVP patients into adulthood.
  • Limited research exists on the life perspectives and coping mechanisms of adult SVP patients.

Purpose of the Study:

  • To explore how young adults with SVP cope with adulthood.
  • To understand the emotional experiences of daily life for individuals with SVP.

Main Methods:

  • Conducted semistructured, qualitative interviews with 11 SVP respondents.
  • Respondents were selected based on physical and psychological parameters from a prior quantitative study.
  • Interview data were analyzed using phenomenological methodology.

Main Results:

  • SVP patients strive to gain control over their condition to live normal lives.
  • Patients require significant support from their social network to manage physical and psychological challenges.
  • External support from friends and non-family resources is crucial for SVP patients to transition from a "disabled patient" role to experiencing "normal" life.

Conclusions:

  • Achieving control over their condition is a primary goal for SVP patients.
  • A robust support system, including individuals outside the immediate family, is essential for SVP patients' well-being.
  • Facilitating "normal" life experiences requires external support to help patients overcome their "disabled cardiac patient" identity.
Abstract

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