持续的痛苦:罕见疾病患者的生活经验:一种解释性的现象学研究
Fatemeh Rezaei1, Akram Sanagoo2, Hamid Peyrovi3
1PhD Candidate in Nursing, School of Nursing and Midwifery, Golestan University of Medical Sciences, Gorgan, Iran.
Journal of education and health promotion
|September 20, 2023
概括
患有罕见疾病意味着不断的痛苦和社会排斥,深深地影响着生活的各个方面. 这项研究探讨了患有罕见疾病的个人的生活经历,突出了他们的挑战和需要更好的理解.
科学领域:
- 医学社会学 医学社会学
- 质量健康研究 质量健康研究
- 患者体验研究 患者体验研究
背景情况:
- 罕见疾病影响全球许多人,造成严重的医疗,心理和社会负担.
- 尽管存在独特的挑战,但罕见病患者的经历仍未得到充分研究.
- 了解这些经验对于改善患者护理和支持至关重要.
研究的目的:
- 探索患有罕见疾病的意义和生活经验.
- 了解罕见病患者所面临的多方面的挑战.
主要方法:
- 在2021-2022年间进行的解释性现象学研究.
- 涉及10名被诊断患有罕见疾病的患者,从伊朗特定省份招募.
- 通过公开和半结构面试收集的数据,使用Van Manen的方法进行分析.
主要成果:
- 五个核心主题出现了:永久的痛苦,被囚禁的感觉,拒绝,认知困扰和生命力的丧失.
- 十个子主题详细介绍了诸如梦,绝望,剥夺,局限性,无价值,耻辱和混乱等经历.
- 这些发现说明了普遍存在的痛苦感,影响了生活的各个领域.
结论:
- 罕见疾病对患者的生活造成了长期的阴影,影响了每一个方面.
- 疾病,残疾和社会排斥造成了严重的局限性,剥夺了患者的正常生活.
- 这项研究强调了罕见病患者所经历的深刻和多方面的痛苦.
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