大多数患有骨肉瘤的患者寻求情感支持和有关其他患者经历的信息:主题分析
Ambika E Paulson1, Alexandra Stein2, Joseph K Kendal3
1School of Medicine, Georgetown University, Washington, DC, USA.
Clinical orthopaedics and related research
|July 11, 2023
概括
患有骨肉瘤的患者主要通过在线论坛寻求情感支持和治疗信息. 医生应该承认这些需求,并将患者引导到可信赖的在线资源,以获得同行支持.
科学领域:
- 在瘤学瘤学.
- 数字健康数字健康
- 患者支持 患者支持
背景情况:
- 在线讨论论坛有助于建立社区,以便患者之间交流信息.
- 与更常见的癌症相比,骨肉瘤患者的经验在在线讨论研究中表现不足.
- 从在线论坛中了解患者的担忧可以改善医生咨询和教育.
研究的目的:
- 识别和分析与骨肉瘤患者护理经验相关的在线讨论论坛中的常见主题.
主要方法:
- 在2012年至2022年期间,从五个骨肉瘤互联网讨论板中对570个帖子进行了定性分析.
- 采用了基于理论的方法论,涉及开放,轴向和选择性编码来识别反复出现的主题.
- 帖子被过为常见的骨肉瘤 (骨髓瘤,Ewing瘤,骨髓瘤),直到达到数据和.
主要成果:
- 情感支持和与他人联系成为最普遍的主题 (78%的帖子).
- 关于治疗的信息支持是第二个最常见的主题 (49%的职位).
- 诊断和康复的信息支持,每一个都占分析职位的15%.
结论:
- 骨肉瘤患者积极寻求情感支持,并在网上分享有关治疗方式的经验.
- 医生应该整合情绪支持,并引导患者使用可靠的在线同行支持资源.
- 需要进一步的研究来评估在线瘤论坛上共享的信息的准确性.
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