需要专门设计的教育支持小组:年轻女性被发现患有BRCA致病变体的经验
Kjærsti Busk Johnsen1, Nina Strømsvik1
1Northern Norway Familial Cancer Center, Department of Medical Genetics, University Hospital of North Norway, Tromsø, Norway.
25岁以下患有BRCA致病变体 (PVs) 的年轻女性发现遗传咨询信息丰富,但需要更好的测试后支持. 他们希望同行联系和教育小组来管理他们增加的癌症风险和未来的决定.
科学领域:
- 遗传学 遗传学 是一个
- 在瘤学瘤学.
- 心理学 心理学 心理学
背景情况:
- 在挪威,从16岁开始可进行BRCA致病变体 (PVs) 遗传测试.
- 患有BRCA PVs的女性可以从25岁开始获得癌症风险管理.
- 这项研究侧重于25岁以下的女性与BRCA PVs的经验.
研究的目的:
- 探索和描述25岁以下接受基因咨询和BRCA PVs检测的女性的经历.
- 了解癌症风险增加对年轻女性生活的影响.
- 确定社会和心理支持需求.
主要方法:
- 定性研究设计. 定性研究设计.
- 与五名被诊断患有BRCA PVs的妇女进行半结构化个人采访.
- 使用系统文本缩写进行主题跨案例数据分析.
主要成果:
- 女性将遗传咨询视为信息和护理的宝贵来源.
- 测试决定是自主性的,有时不同于父母的愿望.
- 患有遗传风险的人对未来的选择产生了焦虑.
- 缺乏同龄人接触导致了孤独的感觉.
结论:
- 患有BRCA PVs的年轻女性需要加强后遗传检测支持.
- 需要专门的教育支持小组和同行会面的机会.
- 遗传咨询师应强调随访选择和心理支持转诊.
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