从慢性健康状况到残疾身份:健康信息学参与的机会
Emma J McDonnell1, Wanda Pratt1
1University of Washington, Seattle, WA.
AMIA ... Annual Symposium proceedings. AMIA Symposium
|February 23, 2026
概括
许多患有慢性健康状况 (CHC) 的美国人现在认为自己是残疾人. 发展这种被视为社会差异的残疾身份,促进了CHC患者的自我接受,可访问性和社区.
科学领域:
- 医疗信息学 医疗信息学
- 卫生社会学 卫生社会学
- 关于残疾人的研究.
背景情况:
- 数以百万计的美国人生活在慢性健康状况 (CHCs).
- 患有CHC的个体的一个子集越来越多地因其状况而认定为残疾人.
- 这种自我认同挑战了传统的健康信息学对残疾和CHC的看法.
研究的目的:
- 探索残疾身份对患有CHC的个体的影响.
- 了解残疾的社会模式如何影响CHC患者的体验.
- 确定健康信息学的机会,以支持残疾身份发展.
主要方法:
- 质量研究涉及采访15名参与者.
- 参与者因他们的CHC被确定为残疾人.
- 分析的重点是采用残疾身份的过程和结果.
主要成果:
- 对参与者来说,发展残疾身份往往是具有挑战性的.
- 采用残疾身份带来了显著的好处,包括增强自我接受.
- 参与者报告说,在接受他们的残疾身份后,可访问性增加和更强烈的社区意识.
结论:
- 被概念化为社会差异的残疾身份为患有CHC的个人提供了巨大的好处.
- 卫生信息学有机会更好地支持残疾身份的发展和积极结果.
- 从仅仅将残疾视为健康缺陷的观点转变为社会差异的一种形式至关重要.
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