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http://dx.doi.org/10.5392/JKCA.2020.20.09.659

Health Management Experiences of Adolescents with Severe Congenital Heart Disease  

Hwang, Ji-Hye (서울대학교 간호대학)
Chae, Sun-Mi (서울대학교 간호대학.간호과학연구소)
Publication Information
The Journal of the Korea Contents Association / v.20, no.9, 2020 , pp. 659-671 More about this Journal
Abstract
Severe congenital heart disease (CHD) is a chronic disease requiring continuous and holistic health management to improve patients' quality of life. This study explored the health management experiences of adolescents with severe CHDs in Korea. On the basis of in-depth interviews with nine youths, four categories and 12 subcategories were identified. The participants lacked a full understanding of their health status and the need for appropriate health management for their health status. Nonetheless, they practiced health management to some extent, in ways that were affected by heart function, self-identity, and social support. Although adolescents with severe CHDs were affected by physical limitations and the discriminatory gaze around them, they tried to achieve normalcy through managing information, seeking homogeneity with peers, and fostering positive acceptance about their disease. Regarding demands for health management programs, disease knowledge and mental health content were preferred, and the preferred delivery methods were self-help group camps and smartphone applications. Based on the results of this study, we suggest a health management intervention to promote a healthy transition to adulthood for adolescents with severe CHDs, and that policy-makers should consider measures that would enable a successful transition to adulthood in the future of youth with severe CHDs.
Keywords
Congenital Heart Defects; Adolescent; Heath Management; Qualitative Research;
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