"学会与袋子一起生活":X (Twitter) 上表达了生活在肠道静脉口腔的人的看法
Luis Fernando Reis Macedo1, Camila Takáo Lopes1
1Escola Paulista de Enfermagem, Universidade Federal de São Paulo, Brazil; Programa de Pós-graduação em Enfermagem da EPE/UNIFESP, Brazil.
患有肠胃瘤的人在网上分享他们的经历,详细介绍了接受,身体管理和情绪健康方面的挑战. 社交媒体为更好的以人为中心的癌症护理和减少耻辱感提供了见解.
科学领域:
- 在瘤学瘤学.
- 医学社会学 医学社会学
- 数字健康数字健康
背景情况:
- 肠道静脉形成是关键的癌症治疗方法,带来了重大的身体,情感和社会挑战.
- 目前关于静脉口腔患者经验的研究主要是临床的,对在线自我表达的理解有限.
- 调查数字社交媒体为患者的感知和生活现实提供了新的见解.
研究的目的:
- 分析在X (以前的Twitter) 上关于肠胃口瘤患者的感知和经验的论述.
- 探索患者如何在公共数字论坛上表达他们与静脉管相关的旅程.
- 为了确定在线表达的与肠胃口腔住生的关键主题和维度.
主要方法:
- 一个定性,探索性,描述性的研究,利用社交媒体内容的词汇分析.
- 在2025年11月,由患有肠胃口腔的个人从X收集了40个葡萄牙公共职位.
- 使用IRaMuTeQ软件与下降层次分类和相似性分析分析文本库的分析.
主要成果:
- 三个主要的词汇类别出现了:口腔作为一个具有挑战性/适应性的过程 (接受,耻辱,重新标志),整合到瘤治疗叙事 (疾病,信仰,感恩) 和即时的身体体验 (疼痛,袋子管理,自尊影响).
- 类似性分析揭示了门体验的相互关联的情感,身份相关和技术方面.
- 在线话语突出了生活在口腔口腔的多维性质.
结论:
- 关于X的在线演讲揭示了,患有肠道静脉瘤的生活是一种复杂的经历,涉及身体,治疗和心理社会适应,特别是在癌症后.
- 社交媒体平台是表达和处理健康经验的重要空间.
- 研究结果可以为以人为中心的瘤护理提供信息,增强技术护理,情感支持和减少耻辱感.
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