与公众和专业人士对唐氏综合征的理解相遇:对父母经历的定性研究
Ellen H Steffensen1,2,3, Stephanie L Santoro4,5, Lars H Pedersen3,6,7
1Center for Fetal Diagnostics, Aarhus University, Aarhus, Denmark.
概括
患有唐氏综合征的孩子的父母面临着不同的公众和专业认知. 这些理解受到产前查的影响,影响家庭,并强调专业人士需要认识到他们在塑造唐氏综合征观点中的作用.
科学领域:
- 社会科学 社会科学 社会科学
- 医学社会学 医学社会学
- 发展心理学是发展心理学.
背景情况:
- 神经发育条件的含义是社会和文化构建的.
- 研究了父母对社会对唐氏综合征的看法的经验.
- 专注于公众和专业人士对唐氏综合征的理解.
研究的目的:
- 探索唐氏综合症儿童的父母如何体验公众和专业的理解.
- 在父母对唐氏综合征的看法中识别主题.
主要方法:
- 在丹麦,对25名患有唐氏综合征儿童的父母进行了定性访谈.
- 用于开发主题的反思性主题分析.
- 探索父母对唐氏综合征的态度和看法.
主要成果:
- 唐氏综合征的诊断充当了一种"标签",带有积极和消极的后果.
- 父母认为社会对唐氏综合征的看法是严重和不理想的,与产前查有关.
- 专业支持传达了对唐氏综合征儿童作为有价值的个体的理解.
结论:
- 父母遇到对唐氏综合征的模两可的理解.
- 专业人士在塑造这些理解中的作用需要得到认可.
- 对父母经历的认识对于支持性专业实践至关重要.
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