“I can also serve as an inspiration” – a role for social media in supporting patients undergoing treatment for multidrug-resistant tuberculosis (MDR-TB)
9 October 2014 — A study published in PLOS ONE by Médecins Sans Frontières/Doctors Without Borders (MSF) highlights the potential for social media to support patients undergoing treatment for multidrug-resistant (MDR) and extensively drug-resistant (XDR) tuberculosis (TB). The qualitative research examined the experiences of patients and health staff involved in the ‘TB & ME’ collaborative blogging project for patients undergoing treatment for MDR and XDR TB around the world.
The current treatment for MDR-TB can take up to 2 years and has a low cure rate in part due to its dreadful side-effects, including deafness, that make adherence to the drugs challenging.
Support for adherence to treatment remains a critical element to cure. Participants in the MSF study reported that blogging was seen to help patients to continue with their treatment. The online audience led to bloggers feeling encouraged by their followers, wanting to set a positive example for others and provided a distraction from the long and difficult treatment. No negative outcomes from taking part in the blogging project were mentioned by those involved in the study.
“Whilst I was undergoing treatment, the support from the blog was overwhelming”, said Phumeza Tsilie, TB & ME blogger and XDR-TB survivor. “It was a rollercoaster ride for me, there was always the chance that the drugs would stop working, but the blog readers were always supportive. On one of my blogs, a reader wrote me a poem. This meant a lot.”
“I Can Also Serve as an Inspiration”: A Qualitative Study of the TB&Me Blogging Experience and Its Role in MDR-TB Treatment
The blog is open to any MDR-TB patients that wish to participate. This global connection with other TB sufferers through blogging led to solidarity through shared experience, support and was said to reduce patients’ feelings of isolation.
“I decided to write and share my story in the hope that I would be able to inspire more patients who are also suffering from the disease to continue and finish their treatment. I want to let them know that there is still hope and life even if you acquire MDR / XDR-TB” said Mildred Fernando-Pancho, TB & ME blogger and XDR-TB survivor.
The blog was also perceived to be beneficial to health practitioners, who felt a greater level of connection and understanding with the patients through reading their blogs.
“The insight I gained through reading the patients’ blogs gave me a connection to the patient that never could have been achieved in our consultations”, said Charles Ssonko, MSF TB Doctor. “Time constraints and the anxiety of the doctor’s presence do not usually allow for these open and honest expressions of feelings”.
Blogging was also seen as a stage for story telling – a story that could be shared without reprisal or fear of judgment. The nature of the audience leant itself to positive rather than negative reaction which meant bloggers felt free to express themselves. Blogging was also a portal to voice their opinion, thoughts and feelings about the disease and treatment.
The results from this research are encouraging. MSF hopes to see more TB patients engage with blogging as this research suggests that social media can play a beneficial role in patient care.
TB and Me
TB&ME is a collaborative blogging project by patients being treated for multidrug-resistant tuberculosis (MDR-TB) in locations all around the world. Bloggers write about their experiences of living with MDR-TB and the treatment that they receive. This treatment can often involve taking upwards of 20 pills a day for 24 months and suffering many painful side effects from the toxic drugs.
Very little money has been put into the research and development of diagnostics or new, improved treatment and people who are infected by MDR-TB have no option but to take drugs which are painful and leave them feeling weak every day. TB&ME gives MDR-TB patients an opportunity to tell the world about the issues which affect their lives, about how treatment and services could be improved and how it feels to have this disease.
It also provides an opportunity for patients to tell the world that MDR-TB exists in their own words, that it is a global problem and to share their experiences with others who might be in the same position.