在社区和医疗环境中患有状细胞疾病的年轻人中的耻辱:一个范围审查
Elana R Abelson1, Kristen E Jastrowski Mano1, Lori E Crosby2
1Department of Psychology, University of Cincinnati, Cincinnati, OH, United States.
Journal of pediatric psychology
|May 20, 2025
概括
在患有状细胞疾病 (SCD) 的年轻人中,人们对耻辱和歧视的经历并未得到充分理解. 需要进一步的研究来改善这些年轻人的生活质量和健康结果.
科学领域:
- 医学遗传学 医学遗传学
- 儿科健康 儿科健康
- 健康的社会决定因素
背景情况:
- 状细胞疾病 (SCD) 是美国普遍存在的遗传疾病,不成比例地影响黑人.
- 在SCD中血管封闭性发作往往导致急诊室的访问,并可能伴随着歧视.
- 有限的研究存在于SCD年轻人之间的歧视经历.
研究的目的:
- 批判性地审查美国SCD年轻人的歧视和耻辱研究.
- 描述目前评估儿科耻辱和歧视的措施.
- 确定关于儿科SCD中的耻辱和歧视的研究缺口.
主要方法:
- 采用了一个范围审查方法,适应了系统审查 (PRISMA) 准则的首选报告项目.
- 从数据库开始到2023年5月进行文献搜索.
- 最初检索了285件物品,在重复删除后剩下214件.
主要成果:
- 关于耻辱的报道根据信息人 (护理人员,青年,提供者) 有显著的差异.
- 耻辱的经验因研究方法 (定性或定量) 和具体的测量方法而异.
结论:
- 对于患有SCD的年轻人来说,对跨发展阶段的耻辱和歧视有更好的理解至关重要.
- 专注于减轻耻辱和歧视的研究是必要的,以改善SCD年轻人的生活质量和健康结果.
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