"它改变了一切":了解人们如何体验生活在较低级别质瘤的影响
Ben Rimmer1, Michelle Balla2, Lizzie Dutton1
1Population Health Sciences Institute, Newcastle University Centre for Cancer, Newcastle University, Newcastle upon Tyne, UK.
Neuro-oncology practice
|May 13, 2024
概括
患有低级质瘤 (LGG) 的生活显著影响日常生活和生活质量. 了解这些经验对于识别和满足LGG患者的支持性护理需求至关重要.
科学领域:
- 神经瘤学神经瘤学
- 生活质量研究 研究 生命质量研究
- 患者支持服务服务.
背景情况:
- 低度质瘤 (LGG) 与健康相关的生活质量降低有关.
- 对于LGG个体的经历和特定的支持性护理需求的了解仍然很少.
- 这项研究旨在探索长期与LGG生活的影响,以告知支持性护理策略.
研究的目的:
- 探索低度质瘤 (LGG) 患者的生活经历.
- 确定与LGG生活对日常生活的多方面的影响.
- 为LGG患者制定量身定制的支持性护理需求评估和个性化计划提供信息.
主要方法:
- 半结构面试对28名参与者进行,其中28名参与者在英国被诊断出LGG.
- 参与者已经完成了初级治疗,诊断后的平均时间为8.7年.
- 对转录的采访数据进行了感应性主题分析.
主要成果:
- 四个关键主题出现了:对诊断的情绪反应,生活在不确定性 ("如果是什么"),改变关系和摇摇欲的独立.
- 参与者描述了症状 (疲劳,) 和障碍 (认知,运动缺陷) 的影响.
- 这些因素显著影响了日常生活,包括工作,社交活动和个人自主权,往往伴随着深刻的情绪.
结论:
- 患有LGG的人面临着各种各样的日常影响,并且有大量的支持性护理需求.
- 这项研究揭示了与LGG生活的主观经验和意义.
- 实施全面的,个性化的需求评估和护理计划对于最佳的LGG患者支持至关重要.
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