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The Process of Change in the Appreciation of Illness by Adults with Congenital Heart Disease: A Qualitative Study Ryota Ochiai 1 , Tomoko Kusakabe 1 , Mitsunori Miyashita 1 , Hideo Sato 2 , Arata Murakami 3 , Mami Kayama 4 , Keiko Kazuma 5 1Department of Adult Nursing/Palliative Care Nursing, School of Health Science and Nursing, Graduate School of Medicine, The University of Tokyo 2Center for Medical Sciences, Ibaraki Prefectural University of Health Sciences 3Department of Cardiothoracic Surgery, Graduate School of Medicine, The University of Tokyo 4Department of Psychiatric and Mental Health Nursing, St. Luke's College of Nursing 5Department of Adult Nursing/Palliative Care Nursing, School of Health Science and Nursing, Graduate School of Medicine, The University of Tokyo Keyword: 成人先天性心疾患 , キャリーオーバー , 成育医療 , grounded theory approach , adult , congenital heart disease , transition pp.57-68
Published Date 2009/2/15
DOI https://doi.org/10.11477/mf.1681100356

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 [Background] As the number of adults with congenital heart disease increases, there has been a growing demand for the uninterrupted management of congenital heart disease from childhood to adulthood. However, little is known about how adult congenital heart disease patients deal with the difficulties in their life and how it influences their appreciation of the illness to experience these difficulties. The present study was performed in order to investigate the process of change in the patien's appreciation of congenital heart disease.

 [Methods] A semi-structured interview was conducted on 17 adults with congenital heart disease, and interview data were analyzed in accordance with the grounded theory approach.

 [Results] The age of the participants ranged from 22 to 35 years. The primary diseases and operations were radical surgery for tetralogy of Fallot, surgical closure of ventricular septal defects, and the Fontan operation. The analysis revealed three stages of change in the patients' appreciation of the illness during transition to adulthood: (1) having illness as one's ordinary state, (2) confronting the illness, and (3) finding meaning in life with the illness. Confronting the illness was found to be a turning point during the process of change in appreciation of the illness by adults with congenital heart disease.

 [Conclusions] Through the transition to adulthood, patients with congenital heart disease confronted their illness, which they had thought to be their ordinary state in their childhood.


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電子版ISSN 1882-1405 印刷版ISSN 0022-8370 医学書院

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