绘制儿童血友病单元中的患者体验:我们的患者旅程
Rubén Berrueco1,2,3, Nuria Caballero1, Mónica López-Tierling4
1Pediatric Hematology Department, Hospital Sant Joan de Déu, Sant Joan de Déu 2, 08950 Esplugues de Llobregat, Spain.
Journal of clinical medicine
|October 26, 2024
概括
针对儿科血友病 (一种X相关的出血障碍) 制定患者旅程图,确定了关键问题和护理缺口. 专注于患者赋权可以显著改善体验和结果.
科学领域:
- 儿科血液学 儿科血液学
- 患者体验研究 研究研究
- 以人为中心的设计
背景情况:
- 血友病是一种罕见的X相关出血疾病,尽管预防措施得到了改进,但仍有持续的未满足需求.
- 了解患者的体验对于识别和解决护理差距至关重要.
研究的目的:
- 为儿科血友病患者开发患者旅程地图.
- 通过视觉描绘患者与医疗保健提供者的关系.
- 为了确定患者的需求",痛点",以及护理中的差距.
主要方法:
- 在儿科血友病病房使用以人为中心的设计进行定性研究.
- 数据收集包括与患者,家庭和专业人员进行半结构化采访.
- 使用观察技术 ("影像") 来捕捉现实世界的经验.
主要成果:
- 开发了一个初步的临床旅程,并与患者报告的经验进行了比较.
- 在各个阶段确定了关键的"痛点":预诊断,诊断,同化,治疗启动,培训和调查.
- 患者和护理人员的赋权成为改善护理的关键机会.
结论:
- 患者旅程地图为儿科血友病患者及其家属的经历提供了宝贵的见解.
- 跨学科团队应专注于患者的学习和赋权过程,以改善结果.
- 需要进一步的实证研究来验证和完善患者旅程模型.
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