了解确定携带者身份对年轻成年人的心理影响:一项定性研究探讨同龄人的反应
Edie Bowen1, John Langston1, Harriet Fletcher1
1Manchester Centre for Health Psychology, Division of Psychology & Mental Health, School of Health Sciences, Faculty of Biology, Medicine and Health, University of Manchester, Manchester Academic Health Science Centre, Manchester, UK.
Journal of genetic counseling
|April 26, 2024
概括
年轻人认为遗传载体面临着严重的耻辱和沟通挑战. 了解这些看法对于开发有针对性的支持和减少社会对运营商身份的误解至关重要.
科学领域:
- 遗传学和公共卫生
- 社会心理学 社会心理学
- 医学社会学 医学社会学
背景情况:
- 童年时代的载体鉴定是有争议的,欧洲的指导方针建议不要这样做,但它在英国通过新生儿查经常发生.
- 人们担心载体识别对个人身份的影响,受社会和家庭观念的影响,特别是在年轻成人时期.
研究的目的:
- 探索非携带者年轻成年人对遗传载体的看法.
- 调查叙述,包括围绕COVID-19的叙述,如何影响"载体"术语的感知和理解.
主要方法:
- 在2021年期间,英国对25名年轻成年人 (18-25岁) 进行了一项日记采访研究.
- 参与者通过假设场景探索对运营商的看法,并使用专题分析分析数据.
主要成果:
- 接受采访的人预计,携带者会受到严重的耻辱 (社会和自我耻辱),这是由于对疾病的理解不足和疾病信仰的应用.
- 他们强调了家庭和恋爱关系中的感知挑战,以及父母对生殖决策的感知负担.
- 了解运营商身份被认为会在人际关系中造成复杂的沟通困难.
结论:
- 迫切需要对年轻人进行研究和支持,他们知道自己的载体身份,特别是在身份形成过程中.
- 支持策略应解决运营商面临的沟通挑战,以及由于对运营商身份的误解而引起的更广泛的社会耻辱.
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