title: Between invisible defects and visible impact: the life experiences of adolescents and young adults with congenital heart disease.
abstract: OBJECTIVE
  To describe the life experiences of adolescents and young adults with congenital heart disease.
  
  
  BACKGROUND
  Owing to medical advances, most children with congenital heart disease are expected to survive into adulthood. The transitional development from adolescence to adult is the critical period for fostering self-care.
  
  
  METHODS
  Descriptive phenomenological study.
  
  
  METHODS
  Thirty-five patients of 15-24 years old with congenital heart disease were recruited from paediatric cardiology clinics by purposive sampling. They were individually interviewed between October 2012-February 2013 using a semi-structured interview guideline and joined adult congenital heart disease clinics at two medical centres in northern Taiwan. The data were analysed using descriptive phenomenological method developed by Giorgi.
  
  
  RESULTS
  The essence of the life experience of adolescents and young adults with congenital heart disease involves a dynamic process of moving between invisible defects and coexistence with the disease. Six themes emerged: (1) invisible defects: the existence of imperfect understanding; (2) conflict: interpersonal frustrations; (3) imbalance: the loss of self-balance; (4) suffering: increasing anxiety; (5) encounters: meeting needs; and (6) coexistence: positive coping strategies.
  
  
  CONCLUSIONS
  As patients with congenital heart disease transition from adolescence into adulthood, they must learn about their disease, overcome frustration and anxiety and develop self-care strategies for coexisting with congenital heart disease. Results of this study may serve as clinical care guidelines for adolescents and young adults with congenital heart disease and give a reference for developing transitional intervention strategies.
authors.affiliation: Graduate Institute of Clinical Medical Sciences, Chang Gung University, Taoyuan, Taiwan.
authors.forename: Yueh-Tao
authors.initials: YT
authors.lastname: Chiang
authors.forename: Chi-Wen
authors.initials: CW
authors.lastname: Chen
authors.forename: Wen-Jen
authors.initials: WJ
authors.lastname: Su
authors.forename: Jou-Kou
authors.initials: JK
authors.lastname: Wang
authors.forename: Chun-Wei
authors.initials: CW
authors.lastname: Lu
authors.forename: Yuh-Fen
authors.initials: YF
authors.lastname: Li
authors.forename: Philip
authors.initials: P
authors.lastname: Moons
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D001007:Anxiety / Q000523:psychology; D032882:Comprehension; D003220:Conflict, Psychological; D005260:Female; D006297:Health Services Accessibility; D006330:Heart Defects, Congenital / Q000451:nursing / Q000523:psychology*; D006801:Humans; D007398:Interpersonal Relations; D008016:Life Change Events; D008297:Male; D012648:Self Care; D012649:Self Concept; D060305:Transition to Adult Care; D055815:Young Adult
keywords: adolescent; congenital heart disease; nursing; transition; young adults