成年状细胞疾病患者的实践经验决定治愈疗法:一种描述性的现象学研究
1Mount Sinai Hospital, New York, NY, USA.
Western journal of nursing research
|February 24, 2025
概括
患有状细胞疾病 (SCD) 的成年人面临的挑战是决定治疗治疗方法,如骨髓移植. 他们的经历揭示了不确定性,提供者影响,以及获得护理的障碍,影响治疗决策.
科学领域:
- 血液学 血液学 血液学
- 遗传学 遗传学 是一个
- 医学社会学 医学社会学
背景情况:
- 骨髓移植和基因疗法为状细胞疾病 (SCD) 提供了潜在的治疗方法.
- 对于患有SCD的成年人来说,追求这些高风险,高回报的治疗疗法的决策过程是复杂的.
- 在考虑治愈治疗时,对于患有SCD的成年人生活经验的理解有限.
研究的目的:
- 描述患有状细胞病 (SCD) 的成年人正在考虑治愈治疗的经历.
- 探索影响SCD治愈疗法的决策过程的因素.
主要方法:
- 定性描述性的现象学研究.
- 在一个大型的城市学术医疗中心,与9名患有SCD的成年人进行了半结构面试.
- 用阿梅迪奥·乔治的5步数据分析来分析描述性现象学的数据.
主要成果:
- 五个主要主题出现了:SCD的不确定性,医院作为第二个家园,提供者的影响力,对新开端的渴望,以及获得护理的挑战.
- 参与者经历了关于治愈疗法的多因素决策过程.
- 对教育材料的有限访问,延迟寻求治疗和复杂的护理导航都是重大障碍.
结论:
- 护士必须了解患者对SCD的体验,患者与医疗服务提供者的关系以及进入障碍.
- 结果可以为SCD护理的政策提供信息,包括移植前和移植后的管理.
- 结果可以指导护理实践和教育,以更好地支持考虑治疗疗法的患者.
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