Journal of Japan Academy of Nursing Science
Online ISSN : 2185-8888
Print ISSN : 0287-5330
ISSN-L : 0287-5330
Reports
Experiences of Families with Inherited Nerve Intractable Disease Who Receive Presymptomatic Genetic Testing: Analysis of Familial Amyloidotic Polyneuropathy, Family Narrative
Chieko KukinakaSatoko NakagomiHiromi KawasakiMitsu Ono
Author information
JOURNAL FREE ACCESS

2013 Volume 33 Issue 2 Pages 2_40-2_50

Details
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.
Content from these authors
© 2013 Japan Academy of Nursing Science
Previous article Next article
feedback
Top