Between invisible defects and visible impact: The life experiences of adolescents and young adults with congenital heart disease
Journal
Journal of Advanced Nursing
Journal Volume
71
Journal Issue
3
Pages
599-608
Date Issued
2015
Author(s)
Abstract
Aim: 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. Design: 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. Findings: 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. Conclusion: 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. ? 2014 John Wiley & Sons Ltd.
SDGs
Other Subjects
adaptive behavior; adolescent; anxiety; comprehension; conflict; congenital heart malformation; female; health care delivery; human; human relation; life event; male; nursing; psychology; self care; self concept; transition to adult care; young adult; Adaptation, Psychological; Adolescent; Anxiety; Comprehension; Conflict (Psychology); Female; Health Services Accessibility; Heart Defects, Congenital; Humans; Interpersonal Relations; Life Change Events; Male; Self Care; Self Concept; Transition to Adult Care; Young Adult
Publisher
Blackwell Publishing Ltd
Type
journal article