Horter Shona, Stringer Beverley, Venis Sarah, du Cros Philipp
Médecins Sans Frontières (MSF), London, United Kingdom.
PLoS One. 2014 Sep 24;9(9):e108591. doi: 10.1371/journal.pone.0108591. eCollection 2014.
In 2011, Médecins Sans Frontières (MSF) established a blogging project, "TB&Me," to enable patients with multidrug-resistant tuberculosis (MDR-TB) to share their experiences. By September 2012, 13 MDR-TB patients had blogged, either directly or with assistance, from the UK, Australia, Philippines, Swaziland, Central African Republic, Uganda, South Africa, India, and Armenia. Due to the lack of research on the potential for social media to support MDR-TB treatment and the innovative nature of the blog, we decided to conduct a qualitative study to examine patient and staff experiences. Our aim was to identify potential risks and benefits associated with blogging to enable us to determine whether social media had a role to play in supporting patients with MDR-TB.
Participants were identified and selected purposively. TB&Me bloggers, project staff, MSF headquarters staff involved with TB and WHO European Region TB policy advisors were invited to participate in a semi-structured interview. Twenty interviews were conducted (five with bloggers). Data analysis drew upon principles of grounded theory, with constant comparison of data, cases and categories, and attention to deviant cases. We found that the TB&Me blog was associated with identified health benefits, with no reported instances of harm. There were three main findings: blogging was reported as useful for adherence to DR-TB treatment and supportive of the treatment-taking process by all bloggers and project staff; blogging provided support to patients (peer support, shared experience and reduction in isolation); and the blog was perceived as giving patients strength and voice.
The TB&Me blog was seen to be associated with positive identified health and emotional benefits. Component 5 of the Stop TB Global Plan highlights the importance of empowering TB patients and communities. Blogging could be a useful tool to help achieve that ambition.
2011年，无国界医生组织（MSF）设立了一个博客项目“结核病与我”，以使耐多药结核病（MDR-TB）患者能够分享他们的经历。到2012年9月，已有13名耐多药结核病患者直接或在他人协助下，从英国、澳大利亚、菲律宾、斯威士兰、中非共和国、乌干达、南非、印度和亚美尼亚发表了博客文章。由于缺乏关于社交媒体支持耐多药结核病治疗潜力的研究，且该博客具有创新性，我们决定开展一项定性研究，以考察患者和工作人员的经历。我们的目的是确定与博客相关的潜在风险和益处，以便我们能够确定社交媒体在支持耐多药结核病患者方面是否能发挥作用。
采用目的抽样法确定并选取参与者。邀请“结核病与我”博客作者、项目工作人员、参与结核病工作的无国界医生组织总部工作人员以及世界卫生组织欧洲区域结核病政策顾问参加半结构式访谈。共进行了20次访谈（其中5次访谈博客作者）。数据分析采用扎根理论原则，不断比较数据、案例和类别，并关注异常案例。我们发现，“结核病与我”博客与已确定的健康益处相关，未报告有伤害事件。有三个主要发现：所有博客作者和项目工作人员均报告称，写博客有助于坚持耐多药结核病治疗，并对治疗过程有支持作用；写博客为患者提供了支持（同伴支持、分享经历和减少孤独感）；博客被认为赋予了患者力量和话语权。
“结核病与我”博客被认为与已确定的积极健康和情感益处相关。《全球终止结核病计划》的第5部分强调了增强结核病患者和社区权能的重要性。写博客可能是实现这一目标的有用工具。
