父母接受和讨论他们孩子神经发育状况的预后遗传信息的偏好:一种定性研究
Erin Turbitt1, Meg Bourne1, Alison McEwen1
1Discipline of Genetic Counselling, University of Technology Sydney, Ultimo, NSW, Australia.
Developmental medicine and child neurology
|December 19, 2023
概括
父母对收到对孩子的预后性遗传检测结果有不同的感受. 他们重视希望和潜在的优势,但也害怕不确定性和社会耻辱.
科学领域:
- 遗传学 遗传学 是一个
- 儿科 儿科 儿科
- 心理学 心理学 心理学
背景情况:
- 预后基因测试为神经发育条件的未来发展提供了洞察力.
- 了解父母的偏好对于有效沟通遗传测试结果至关重要.
研究的目的:
- 探索父母对孩子预后遗传检测结果的偏好和动机.
- 确定影响家长接受或拒绝预后遗传信息的因素.
主要方法:
- 一项使用半结构面试的定性研究,对32名患有遗传神经发育疾病的儿童的澳大利亚父母进行了半结构面试.
- 数据使用反射主题分析来分析.
主要成果:
- 父母对接受预后性遗传信息表达了不同的观点,有些人更喜欢不确定性.
- 关于预后的谈话是情绪化的;父母喜欢讨论潜在的优势和挑战.
- 测试的动机是存在的,以及对失去希望和社会耻辱的担忧.
结论:
- 父母对预后遗传信息的偏好各不相同,不同于癌症护理等环境.
- 在提供预后遗传结果时,医疗保健专业人员应采用基于强度的沟通策略.
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