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Experiences of Families with Inherited Nerve Intractable Disease Who Receive Presymptomatic Genetic Testing: Analysis of Familial Amyloidotic Polyneuropathy, Family Narrative Chieko Kukinaka 1 , Satoko Nakagomi 2 , Hiromi Kawasaki 3 , Mitsu Ono 4 1Faculty of Life Science, Kumamoto University 2Interdisciplinary Graduate School of Medicine Engineering, University of Yamanashi 3Institute of Biomedical & Health Sciences, Hiroshima University 4Department of Health Science, Faculty of Medical Science, Kyushu University Keyword: 家族性アミロイドポリニューロパチー , 発症前遺伝子診断 , 体験 , familial amyloidotic polyneuropathy , presymptomatic genetic testing , experience pp.40-50
Published Date 2013/6/20
  • Abstract
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Abstract

 【Purpose】The aim of this study was to elucidate the thoughts and feelings of presymptomatic FAP family members who underwent the genetic testing for FAP and obtained the positive result of abnormal transthyretin gene, and to utilize the results for better nursing to such subjects in the future.

 【Methods】Data from five presymptomatic family members of FAP patients were collected by using a half structured interview method. The data were analyzed by content analysis.

 【Results and Discussion】They experienced the death of a parent or a relative who had fought against illness since the respondents were children. And they were informed that they were at risk of appearing FAP themselves. They made up their mind to inspect presymptomatic genetic testing to be responsible to their possible future family. In examination for the genetic test they were found to be positive. They, of course, felt aggrieved by this, but it reaffirmed their desire to live. The brothers were different in their thinking for presymptomatic genetic testing. They felt a debt for the husband and wife, and they felt guilt for the children.

 【Conclusion】It was suggested that it was important that I would show various choices in the design in the future as to how they could best live with the disease. It was suggested that it was important that I undertook psychology research on how to build richer social support.


Copyright © 2013, Japan Academy of Nursing Science. All rights reserved.

基本情報

電子版ISSN 2185-8888 印刷版ISSN 0287-5330 日本看護科学学会

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