了解深度自闭症:对耻辱和支持的影响
Elaine B Clarke1, James B McCauley2, Amy Lutz3
1Department of Psychiatry and Biobehavioral Sciences, University of California, Los Angeles, Los Angeles, CA, United States.
Frontiers in psychiatry
|February 6, 2024
概括
深度自闭症的患病率在不同的人群中存在显著差异. 深度自闭症成年人的护理人员经常经历耻辱感,在支持和宣传方面面临挑战.
科学领域:
- 神经发育障碍 神经发育障碍
- 自闭症谱系障碍研究研究
- 公共卫生 公共卫生
背景情况:
- 社会上的耻辱和对自闭症谱系障碍 (ASD) 的误解对自闭症个体和家庭产生负面影响.
- 深度自闭症是一种严重的自闭症形式,影响着一个边缘化群体,有显著的服务需求.
- 关于深度自闭症患者的患病率和生活经验的数据有限.
研究的目的:
- 为了确定深度自闭症在不同人群中的患病率.
- 探索深度自闭症成年人的护理人员的经验.
- 确定家庭所面临的关键挑战,以支持患有深度自闭症的个人.
主要方法:
- 采用混合方法方法,结合流行率估计和定性分析.
- 在美国和西欧的六个不同的样本中评估了深度自闭症的患病率.
- 诱导性主题分析被用来编码20个深度自闭症成年人的护理人员的采访.
主要成果:
- 深度自闭症的患病率在研究样本中从11%到48%不等,因性别,种族和种族而异.
- 两个主要主题出现了:社区对自闭症的看法和家庭支持/宣传挑战.
- 显著的大多数护理人员 (85%) 报告说,他们经历了感知到的耻辱感,即使没有直接调查.
结论:
- 未来的研究对于了解深度自闭症患者及其家属所经历的具体需求和耻辱感至关重要.
- 解决这一群体的独特挑战和支持需求对于改善其生活质量至关重要.
- 需要在整个生命周期中进行持续的调查,以告知有效的干预措施并减少社会耻辱.
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