遗传性疾病家庭的耻辱化经验:一项探索性研究
Joana Oliveira1, Álvaro Mendes2,3, Milena Paneque2,3,4
1FPCEUC - Faculty of Psychology and Educational Sciences, University of Coimbra, Coimbra, Portugal. oliveirapjoana@gmail.com.
Journal of community genetics
|March 25, 2025
概括
耻辱症在葡萄牙显著影响着遗传病患者及其家属,影响个人福祉和社会互动. 了解这些经验对于开发有效的支持和减少社会偏见至关重要.
科学领域:
- 社会学 社会学 社会学
- 遗传学 遗传学 是一个
- 心理学 心理学 心理学
背景情况:
- 遗传性疾病带来了超越身体症状的独特挑战.
- 污名化是受遗传疾病影响的个人和家庭经常报告的负担.
研究的目的:
- 探索葡萄牙遗传病患者及其家属的污名化现实经验.
- 确定与耻辱相关的背景,心理社会影响和应对机制.
主要方法:
- 与受影响的个人,载体和家庭成员进行了17次半结构面试.
- 诱导性内容分析用于分析定性数据.
主要成果:
- 耻辱感是跨家庭,社会,学术,工作,医疗保健,社会保障和保险领域的.
- 心理社会影响包括尬,悲伤,丧,孤立和避免关系.
- 常见的应对策略包括解释这种情况和社会退缩.
结论:
- 研究结果强调了与遗传性疾病相关的污名的普遍性.
- 需要提高社会意识,专门的医疗保健专业人员培训,以及减轻污名化的国家战略.
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