Background to the TB&Me project

When the blogging project was initiated in 2011, potential bloggers for the TB&Me site were identified by MSF project staff. In some cases they were patients who had already taken part in communication activities. After the project had started, certain TB patients not being treated by MSF contacted the project via the TB&Me website to express their interest in blogging on the site. Potential bloggers were given information about the blog, the blog's purpose and what blogging involved. Bloggers took part in the project voluntarily, with the project being clearly explained and informed consent being received prior to blogging commencement. MSF patients were informed that choosing not to take part in the blog or stopping at any point would not affect the services they receive in any way.

The blogging process was often assisted by project staff, for instance by collecting the blogger's response orally and transcribing it to the computer for those who were not computer literate or did not have access to a computer (subsequently referred to as “assisted bloggers”). Care was taken to ensure that the project staff member assisting the blogger was not directly responsible for the blogger's MDR-TB treatment. Bloggers who were not receiving TB treatment from MSF wrote blog entries themselves in English. Of the ten MSF bloggers, eight were assisted bloggers and six of the resultant blogs were translated into English. Blog entries were minimally edited to address only security concerns, defamatory comments or medically inaccurate information in addition to spelling and grammar. All non-minor changes were discussed with the patient and the patient's acceptance of the new version ensured before the blog was posted. Project staff would regularly provide feedback to assisted bloggers, including reading them any comments received on their blog entries.

The blog has provided a platform to reach a potentially wide audience. Over 50,000 people visited the TB&Me blog in the 8 months preceding September 2012, with 18% of visits occurring from mobile telephone access and most website visits occurring from the US (37%), UK (15%) and South Africa (10%). In September 2012 there had been 267 comments made on 94 posts on the blog alone, not including those on Facebook or Twitter, which are not as easily tracked.

Ethics Statement

Formal ethics approval for the study was gained from the MSF Ethics Review Board. Informed consent forms were sent to participants prior to interviews with aid of an information sheet stating the purpose of the study and outlining the voluntary nature of participation. Informed, verbal consent was given by all participants prior to interview commencement and recording over Skype. Written consent was requested to be sent via post. Confidentiality was ensured through the use of pseudonyms and data storage protection procedures. Feedback mechanisms were used to ensure participants were aware of the findings of the study from which they could choose to opt out, this included sending a written summary of the findings and asking project staff to interpret or translate these for patients who spoke different languages or were illiterate. This consent procedure was approved by the MSF Ethics Review Board.

Participants

Six of the 13 bloggers were un-contactable or untraceable: one had died, in another case the MSF project had closed and no contact details were available for the two patients; and one project (with three patients) required an additional local ethics approval process which could not be arranged within the study timeframe. All seven of the contactable patients were invited to participate: five agreed and were interviewed; the remaining two were interested in the study, but were not able to participate as they had finished treatment and now worked full-time. Of the five bloggers who participated: two were non-MSF patients who blogged directly, one was an MSF patient who blogged directly and two were MSF patients who were assisted bloggers.

Eight interviews were conducted with project staff (Table 1), both expatriate and nationals of the country, who had been closely involved with the bloggers. At least two staff members were interviewed from each interviewed blogger's location or project. Seven interviews were conducted with stakeholder respondents: two with WHO European Region TB specialists and five with various members of staff from MSF headquarters (Table 1). Further information on participants' geographic location and/or position of employment has not been provided to protect confidentiality. Thus, 20 interviews were conducted in total.

Download:

• PPT
  PowerPoint slide
• PNG
  larger image
• TIFF
  original image

Table 1. Project staff and stakeholder participants.

https://doi.org/10.1371/journal.pone.0108591.t001

1. Blogging and the treatment-taking process

All five blogger participants mentioned blogging as being supportive for adherence to MDR-TB treatment. Participants were not asked about this directly and thus it was a strong emergent theme, which was also reiterated by seven of the eight project staff respondents. The eighth project staff respondent did not mention adherence directly, but mentioned the blog as assisting with following infection prevention measures:

1. ‘The blog helped [patient]… to get motivated and use the mask’ Project Staff 01

Blogger participants mentioned the blog's comments facility as providing them with encouragement to continue with their treatment; as well as the feeling of having an audience following their blog whom they did not want to disappoint. This audience included other patients who they wanted to provide an example for:

1. ‘I said I will stop, I will not take the drugs anymore; but then I thought that I will disappoint all those who are following me on the blog at that point. And that's why I decided to continue with the treatment’ Blogger 05
2. ‘I was happy when I heard the words of encouragement from people, then I felt like to take the drugs as soon as possible’ Blogger 04

This was echoed by some project staff participant responses:

1. ‘That time his adherence was become very poor but… then we explained that see, all the world is following you and your blogs, and they are giving lots of good comments… after listening all these things then he came to me ‘yes, I can do these things, I will complete my treatment and I will show to this world that we can cure the TB’… and yes, then his adherence was good’ Project Staff 02
2. ‘On the blog people think that they are being watched and they are more likely to continue their treatment because of that… she understands that if she would write in the blog that she stopped the treatment it would influence other patients and it would have a negative effect on others’ Project Staff 07

Certain stakeholder responses also highlighted the potential for the blog to provide treatment support to patients, which was seen to be particularly significant for MDR-TB given the challenges associated with this treatment:

1. ‘It has helped them get across the darkest periods of their treatment… it might have encouraged them to not give up when they felt like giving up’ Stakeholder 05

Several participants saw the blog as providing a distraction from treatment, and some even felt blogging might help patients achieve positive health outcomes:

1. ‘And it [blog] helps her to deal with the treatment, to get cured from the treatment’ Project Staff 08

The struggles patients experience with MDR-TB treatment and the side effects are highlighted in several of the blogger stories, for example:

1. I had hardly started the treatment when I began feeling terribly bad. After taking the drugs I was vomiting, losing my appetite, couldn't see or hear properly, had strange noises in my ears, felt a heaviness on my back, my heart was beating slowly and it was difficult for me to breathe.
2. After taking the drugs, these kinds of feelings started and lasted till evening. The doctors said I was feeling the “side-effects of the drugs” and I had to get used to them if I wanted to be cured.
3. After taking the drugs for two weeks and feeling like I was passing through hell, the only idea that occurred to me was to escape from the hospital. I was thinking that this kind of experience couldn't possibly be ‘treatment’. I began to think I would lose my mind or would die. (Extract from blog story published on TB&Me)

Several reader comments have been made to blog stories encouraging patients to continue with their treatment, for example:

1. One day at a time! Pain can make a slave out of a person, but you will be The winner – don't give up !!! You are not alone!!! (reader comment on a blog story published on TB&Me)

2. Blogging providing alternative support to patients

Blogging was seen as providing support to bloggers and was also perceived as a source of peer support for other patients, by all blogger and project staff respondents and several stakeholder respondents. Participants mentioned the blog enabling patients to share their experiences with others, including other patients, project staff members and the general public:

1. ‘I'm kind of very happy about sharing experiences because people then they respond to the blog by writing some comments so you know it's like a conversation… you feel nice that somebody is listening to you and kind of feels what you have gone through’ Blogger 01
2. ‘She was very keen to have the opportunity to write her story and for other people to read it, that was happiness to her’ Project Staff 07

The blog was seen to provide bloggers with feelings of solidarity, reducing isolation through encouraging comments and through increased awareness of others experiencing MDR-TB:

1. ‘[blogging] makes you to realise that you are not alone in the struggle, that other people are also experiencing the same things that you are experiencing, and other people have already conquered the disease’ Blogger 02
   ‘when we see the blog, people are commenting on him, we printed out the email and gave it to him… he was so happy that tears flowed out because he said that ‘oh people are still loving me and still encouraging me to try more… even though I am alone or I am not with my family’… when he hears good comments from others it makes him strong’ Project Staff 06
2. ‘When you see that in different countries it's the same, everywhere, all patients can have the same difficulties it helps to understand that you are not the only one and as other people can overcome difficulties you also can do it’ Project Staff 08
3. ‘Solidarity. If I would be a TB or MDR-TB patient and I was reading this, I would feel encouraged… I would feel less alone that I have to take these 20 pills and my liver is a bit screwed up and… I'm really traumatised by the side effects, so I would see there are other people, and it's not in my country, it's in the region and globally, so I'm not alone… you contributed something to other patients… this kind of solidarity for the patient we should not underestimate’ Stakeholder 07

Participants felt that the blog was a source of peer support for other patients, providing them with hope and information about treatment and the disease:

1. ‘The main thing is to share my story because I understand the hardships of taking all those drugs and then the TB stigma and I think aside from being an inspiration for all those TB patients I can also serve as an inspiration for my co-bloggers at TB&Me because most of them are still under treatment’ Blogger 02
2. ‘The stories that you read on the blog are written by patients who passed already this way and they are successful, and this helps the patients who are just diagnosed with drug resistant TB to start the treatment’ Project Staff 07
3. ‘I can imagine that patients learn from each other's stories… I've seen that people who are blogging are looking at the stories from other people’ Stakeholder 04

This is also demonstrated through some of the comments on blog entries, where patients are reading other patients' stories:

1. Hi, I am a patient of TB…. I am in the treatment of the MDR-TB… it's very hard to face the problems right now… therefore I started surfing web…. (reader comment on blog story published on TB&Me)

Several project staff and stakeholder interview respondents saw blogging as conducive towards the practitioner better understanding the patient, enabling enhanced patient-practitioner relationships and dialogue:

1. ‘Having the blog was really useful for us to get some kind of insight into what [patient] was thinking… [project staff members] realised some things about what she was thinking and feeling that they hadn't realised before’ Project Staff 04
2. ‘I think I gained trust and our relationship is stronger… this blog helped me personally as a [position] to know him better and… shows me how to deal with him with his problems’ Project Staff 03
3. ‘I would hope that there's a direct impact on field staff who are working with patients, you know, to have that patient connect and a better sense of what patients are going through’ Stakeholder 04

Beyond frontline practitioner relationships with patients, all seven stakeholder respondents mentioned the blog as providing a human face to MDR-TB, which enabled wider understanding of patients' experiences with the disease, and highlighted priority areas or key challenges for programmatic and policy focus:

1. ‘What is important in the blog is that… you don't see the patient as a patient, but as a personality and telling a story, and then it becomes very strong’ Stakeholder 03
2. ‘The connection with the patients and their stories and the understanding that side of it makes it more urgent and more real’ Stakeholder 04
3. ‘Social media is I think the best channel to get more MDR-TB patients involvement into defining the policy’ Stakeholder 06
4. ‘If patients are informing us through the blog about difficulties they're having with adherence, difficulties they're having with side effects, if it helps us to stop and think hey maybe we can do something about it to make it easier and not only for that patient but for other patients, then it stimulates ideas’ Stakeholder 04

There was one deviant case or discrepancy from the majority themes, where a blogger mentioned expectations of financial gain as a result of blogging. This concern was also raised by one of the project staff members working with this patient, who feared such expectations from the patient; but felt the informed consent process prior to blogging should have adequately achieved management of these expectations. This patient experienced memory loss as a side-effect of MDR-TB drugs, which might explain this response.

3. Blogging as a tool for patient expression and empowerment

Four of the five bloggers mentioned the blog as providing an avenue through which they could express their feelings and experiences, which was echoed by project staff responses. Several blogger participants saw this as preferable to communicating verbally, due to the journal-like nature of the blog providing ease of expression and less fear of judgement or audience reaction. The blog was said to offer the choice of whether or not to listen to or read blog audience reactions, whereas some participants felt when they discussed their experiences relating to MDR-TB verbally, the reactions they received could demonstrate a lack of understanding, empathy or support:

1. ‘Through blogging you can share thoughts without thinking of what others will think’ Blogger 02
2. ‘It helps to write what happened and what my experience was, what went on in terms of TB results, of the culture negatives and the positives’ Blogger 03
3. ‘I can imagine it being quite like, you know, like a diary to just get it all out there.’ Project Staff 04

The advantages of verbal expression, either through video or in person were mentioned by three blogger respondents, some project staff and several stakeholder respondents. These advantages included enhanced emotive response, ease of connection through eye contact and body language and allowing access to a different audience. These respondents felt that having the option of both blogging and verbal expression would be advantageous. Several barriers to verbal expression were mentioned: infection control; health status, for example patients unable to communicate verbally due to weakness or drug side-effects; language barriers; and fear of negative reaction or stigma.

1. ‘I love the fact that we do video blogging, this is much more effective in some cases at least, you know, you see people's facial emotions, you see their interaction, you see the happiness and despair in their faces, so it's probably much stronger’ Stakeholder 05
2. ‘TB is an airborne disease, and speaking face to face with an MDR-TB patient is not really safe. However, we can have face-to-face virtual discussion of speaking on the blog, sharing their experience’ Stakeholder 06

Several project staff and stakeholder respondents mentioned the blog as providing a voice for MDR-TB patients and a platform to speak out about their experience with the disease. The blog was identified as a tool through which patients could potentially be empowered, with sharing their experiences via this mechanism being seen as providing strength to the blogger:

1. ‘It will empower them and their health’ Blogger 05
2. ‘I mean obviously this kind of blog also… contributed to that, getting patients to have a voice’ Project Staff 04
3. ‘[the blog] Giving a stronger patient voice in a format that they don't have to directly say it to the doctor is very helpful’ Stakeholder 02
4. ‘The benefit that it directly gives to patients, that feeling of being empowered, that wanting to win their own you know struggle against the disease’ Stakeholder 05

It was also seen as a means by which patients could feel more positive, allowing them to reflect on the difficulties they had been through with MDR-TB. For patients who have completed treatment and are cured it gave them a sense of appreciation for what they have now. Some blogger and project staff respondents said it allowed recognition of their achievements:

1. ‘And they are like lessons in life, and you should never forget lessons, so it's kind of a going back to what you have gone through and in fact they make you even more strong. That you know, oh I have gone through this, what is this, what is this current situation, I can do this’ Blogger 01
2. ‘Now when I look back, whatever was written I have achieved it’ Blogger 05

Three of the five bloggers mentioned the blog as providing patients with a positive celebrity status, which was echoed by several project staff respondents:

1. ‘Now people around the world knows me because of my status’ Blogger 04
2. ‘She became a bit of a celebrity’ Project Staff 04

No patient or project staff respondents mentioned instances where patients involved with the blog experienced any negative outcomes or effects from the blog, nor perceived any harm subsequent to blogging.

Limitations

The methods inherent to qualitative study design limit the generalisability to concepts of our findings. However, participants were interviewed from a range of different countries and regions, with both MSF and non-MSF patients included, which enhances the validity and representativeness of the findings. There is a certain level of respondent bias in the selection of participants included in this study, in terms of which patients opted to blog. Only one form of social media was explored in this study; there is the need to look into the potential role of other social media tools.

It is unlikely that data saturation was achieved with five blogger interviews being conducted, however several steps were taken to ensure validity including triangulating blogger interview responses with those of project staff. As the same themes emerged from both respondent groups this strengthens validity of the findings. This study explored perceptions and experiences; it was not designed to gather evidence of whether the views expressed by staff and patients were reflected in real events. Patients' experiences can be very individual and varied; our findings that blogging was useful to these patients does not mean that blogging will be useful to all patients. Also, exploring the effect of the TB&Me blog on those reading the blog stories was outside of the scope of this study. The findings presented here reflect those of TB&Me bloggers, project staff and stakeholders working in the TB field who have prior knowledge of the TB&Me blog, rather than wider audiences or the general public. Exploring the influence of blogging on blogger readers could be a point for future research.

We have not distinguished between assisted bloggers and direct bloggers in the presentation of the findings, as the same themes emerged with both sets of participants. However, it should be noted that the additional support patients received related to blogging, particularly in the case of assisted bloggers, could have influenced the findings presented in this study.