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Keywords

congenital heart disease, lived experiences, network, normalization, single ventricle physiology

 

Authors

  1. Overgaard, Dorthe PhD, RN
  2. King, Catriona RN
  3. Christensen, Rie F. MSc
  4. Schrader, Anne-Marie MPH, RN
  5. Adamsen, Lis PhD, RN

Abstract

Background and Research Objective: Approximately 3% of children with congenital heart disease born in Denmark have single ventricle physiology (SVP). In previous decades, these children did not survive into adulthood. However, because of new surgical techniques and improved medical care, they now have a 90% survival rate. Several studies have described the somatic status of SVP patients using clinical parameters; however, only a few studies have researched the life perspectives and coping skills in this patient group. The aim of this study was to investigate how young adults with an SVP diagnosis are coping with adulthood and the emotional experiences of daily life.

 

Subjects and Methods: Semistructured, qualitative interviews were held with 11 SVP respondents, selected by physical and psychological parameters identified in an earlier quantitative study. Data from the interviews were analyzed by a research group using a phenomenological methodology.

 

Results and Conclusions: The goal for SVP patients is to gain control over their disease to live normal lives. Patients require special support from their core network to overcome physical and psychological challenges. Respondents underscored the need for friends and resource persons outside the family to help lift them out of their role as disabled cardiac patients and provide them with "normal" life experiences.