对患者参与遗传咨询的定义
Jacqueline Fung1, Misha Rashkin2, Claire Barton1,3
1Department of Genetics, Stanford University School of Medicine, Palo Alto, California, USA.
Journal of genetic counseling
|December 5, 2024
概括
患者参与基因咨询包括应用教育,表达情绪,感受所有权,并建立治疗联盟. 这促进了共同决策,以获得更好的健康结果.
科学领域:
- 遗传学 是一个遗传学.
- 医疗保健研究 医疗保健研究
- 心理学 心理学 心理学
背景情况:
- 患者参与对于改善健康结果和护理经验至关重要.
- 有限的研究存在于患者参与,特别是在遗传咨询会议内.
- 需要对美国非英语人口中的患者参与进行更多研究.
研究的目的:
- 探索患者参与遗传性癌症风险测试前遗传咨询的要素.
- 了解英语和西班牙语人口中的患者参与.
- 制定一项关于患者参与遗传咨询的工作定义.
主要方法:
- 使用诱导方法对录制的遗传咨询会话进行定性编码.
- 对40名英语和西班牙语参与者的成绩单进行主题分析.
- 分析的重点是确定患者参与和决策的主题.
主要成果:
- 在测试前的遗传咨询中,确定了患者参与的六个主要主题.
- 一项关于患者参与遗传咨询的拟议定义包括四个组成部分:教育的应用,情感的表达,所有权的感觉和治疗联盟.
- 这些组成部分共同促进共享决策.
结论:
- 患者参与遗传咨询是多方面的,包括教育应用,情绪表达,所有权和治疗联盟.
- 这些发现与现有的患者参与模型和遗传咨询中的互惠参与模型保持一致.
- 未来的研究应该专注于测量和增强患者在各种遗传咨询环境中的参与.
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