知识来源,家庭和同行支持,披露和在系统性自身免疫性风湿性疾病 (SARDs) 患者中在社交媒体平台上发布:基于调查的跨部门研究:基于调查的跨部门研究
Hana Alahmari1, Kholoud Almaabadi2, Waleed Hafiz3
1Department of Rheumatology, King Khalid University Hospital, Abha, Saudi Arabia.
Journal of patient experience
|February 9, 2026
概括
患有系统性自身免疫性风湿性疾病 (SARD) 的患者向医生和社交媒体寻求信息. 对耻辱的恐惧阻碍了公开披露,强调了需要更好的教育和支持.
科学领域:
- 类风湿病学 类风湿病学
- 公共卫生 公共卫生
- 社会科学 社会科学 社会科学
背景情况:
- 系统性自身免疫性类风湿性疾病 (SARDs) 对患者构成重大挑战.
- 了解患者的知识,支持系统和披露行为对于改善护理至关重要.
研究的目的:
- 调查中东SARD患者的信息来源,社会支持和公开披露意愿.
- 识别披露的障碍,如耻辱和感觉像一个负担.
主要方法:
- 在沙特阿拉伯三个医院对301名成人SARD患者进行了横截面调查.
- 通过问卷收集的数据包括社会人口统计,临床细节,支持网络和披露实践.
- 使用SPSS v25.0.0.进行统计分析.
主要成果:
- 大多数 (84.7%) 从医生那里获取疾病信息,50.2%使用社交媒体.
- 超过一半的人表示家庭支持 (55.1%) 和工作场所合作 (49.5%).
- 披露的重大障碍包括对耻辱的恐惧 (32.2%) 和感到负担 (14.6%).
结论:
- 医生和社交媒体是SARD患者的关键信息来源.
- 虽然存在社会支持,但耻辱仍然是公开披露的主要障碍.
- 改善患者教育,支持小组和公众宣传活动至关重要.
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