对接受亨廷顿病预测测试结果为负的个体的心理社会影响:一项探索性定性研究
Harumo Osawa1,2, Manami Matsukawa3, Akiko Yoshida4,5
1Department of Medical Genetics and Medical Ethics, Kyoto University School of Public Health, Kyoto, Japan.
不遗传亨廷顿病 (HD) 的个人会经历复杂的情绪和幸存者的内. 了解它们的心理社会影响和遗传咨询的作用对于长期护理至关重要.
科学领域:
- 神经遗传学 神经遗传学
- 基因测试对社会心理的影响
- 在医疗保健领域进行定性研究.
背景情况:
- 亨廷顿病 (HD) 是一种自体主导的神经退行性疾病,没有治愈方法.
- 预测性遗传检测对非携带者对疾病的心理社会影响仍然不太清楚,特别是在日本.
- 定性研究对于探索接受预测测试的人的细微经验至关重要.
研究的目的:
- 阐明成为亨廷顿病 (HD) 的非携带者所带来的心理社会影响.
- 检查遗传咨询在预测测试和对非携带者的随访中的作用.
- 了解那些获得了HD预测测试负结果的个人的生活经历.
主要方法:
- 进行了半结构面试,对8名接受了HD预测测试的人进行了半结构面试.
- 采访数据的文字转录.
- 应用主题分析,从定性数据中识别关键主题和类别.
主要成果:
- 出现了四个主要主题:对测试结果的看法多样性,对生活作为非载体的看法,家庭关系的变化和家庭内部的信息共享.
- 非携带者经历了一系列情绪,包括解脱,惊喜,怀疑和遗憾,以及幸存者的内,使命和责任.
- 观察到利他主义行为,可能与日本集体主义有关,一些参与者对与兄弟姐妹分享结果表示担忧.
结论:
- 非携带HD的人可能会经历复杂的心理状态,在像日本这样的高语境沟通文化中可能很难表达.
- 了解作为HD非携带者的主观和客观负担至关重要.
- 长期跟踪和量身定制的遗传咨询对于在预测测试后支持非携带者很重要.
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