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患有慢性病的生活:患者的未来前景和预后需求 - - 一项定性研究
Jet Milders1, Yvette Meuleman2, Chava L Ramspek3
1Department of Clinical Epidemiology, Leiden University Medical Center, Leiden, The Netherlands. J.Milders@lumc.nl.
BMC nephrology
|July 2, 2025
概括
患有慢性病 (CKD) 的患者有不同的情绪反应和对未来预后信息的特定需求. 根据个人偏好调整讨论对于在CKD护理中共享决策至关重要.
科学领域:
- 腎臟病學 (nephrology) 是一種醫學專業.
- 患者为中心的护理
- 健康心理学健康心理学
背景情况:
- 个性化预后信息有助于慢性病患者在未来的规划和共同决策.
- 慢性病患者表达了对未来更多信息的渴望,但他们的具体预后需求仍未得到充分探索.
研究的目的:
- 探索慢性病 (CKD) 患者如何看待他们的未来.
- 为了确定慢性病患者的具体预后信息需求.
主要方法:
- 一项定性,探索性-描述性研究,涉及163名成年CKD患者在各个阶段.
- 通过采用开放式问题的调查收集的数据,使用感应主题分析进行分析.
- 通过荷兰两家医院的患者协会和医疗保健专业人员分发的调查.
主要成果:
- 慢性病患者对自己的未来有各种各样的情绪,包括恐惧,悲伤,希望和平静.
- 预后需要不同,重点是治疗,疾病进展,自我管理,症状,预期寿命和生活参与.
- 虽然许多人希望获得个性化的信息,但有些人觉得自己有所了解,或者更喜欢专注于现在.
结论:
- 慢性病患者表现出多样化的情绪反应和未满足的问题,关于他们的未来,尽管正在进行科讨论.
- 当与CKD患者讨论未来时,个性化的方法是必不可少的,尊重他们的各种情绪和偏好.
- 解决个体预后需求可以增强共享决策和患者对CKD管理的理解.
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