18-35岁血友病患者在社会生活中面临的问题:一种定性研究
Selin Davun1,2, Zeynep Meva Altaş2,3, Mahmut Batman4
1Sultanbeyli District Health Directorate, Istanbul, Türkiye.
Expert review of hematology
|February 17, 2025
概括
患有血友病的年轻人面临着社会挑战,包括教育延迟和耻辱感. 非政府组织的支持显著改善了他们的生活质量.
科学领域:
- 社会科学 社会科学 社会科学
- 医学人文学科 医学人文学科
- 公共卫生 公共卫生
背景情况:
- 血友病显著影响18-35岁个体的社会生活.
- 了解这些社会挑战对于改善患者福祉至关重要.
研究的目的:
- 确定和评估年轻成年血友病患者遇到的社会问题.
- 确定影响其社会福祉的因素.
主要方法:
- 涉及13名血友病患者 (18-35岁) 的定性研究.
- 进行了雪球采样和在线采访.
- 对半结构面试数据进行了主题内容分析.
主要成果:
- 参与者经历了教育延迟和污名化,影响了学校教育.
- 经济负担导致家庭迁移或改变工作位.
- 虽然土耳其的医疗保健总体上是足够的,但农村地区的获取问题被注意到.
- 在非政府组织的成员大大提高了生活质量.
结论:
- 通过宣传活动来减少耻辱是社会福祉的关键.
- 对于患有血友病的人来说,需要培养一个更有支持性的社会环境.
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