https://scholars.lib.ntu.edu.tw/handle/123456789/525271
Title: | Between invisible defects and visible impact: The life experiences of adolescents and young adults with congenital heart disease | Authors: | Chiang Y.-T. Chen C.-W. Su W.-J. JOU-KOU WANG CHUN-WEI LU Li Y.-F. Moons P. |
Issue Date: | 2015 | Publisher: | Blackwell Publishing Ltd | Journal Volume: | 71 | Journal Issue: | 3 | Start page/Pages: | 599-608 | Source: | Journal of Advanced Nursing | 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. |
URI: | https://www.scopus.com/inward/record.uri?eid=2-s2.0-84922908917&doi=10.1111%2fjan.12546&partnerID=40&md5=5602dfd564e4bbdf268e79b519dceeac https://scholars.lib.ntu.edu.tw/handle/123456789/525271 |
ISSN: | 0309-2402 | DOI: | 10.1111/jan.12546 | SDG/Keyword: | 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 |
Appears in Collections: | 醫學系 |
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