"I can also serve as an inspiration": A qualitative study of the TB&Me blogging experience and its role in MDRTB treatment

Abstract

Background: 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. Methods and Findings: 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 semistructured 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. Conclusion: 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.