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QUALITATIVE RESULTS

The findings are presented from both in-depth interviews with patients and focus group discussions with practitioners� Two main themes emerged from the data, in the first instance the theme that emerged was a description of the situation that patients are living in, which is characterised by a state of vulnerability, despair and experience of prejudice and marginalisation due to their medical conditions, prison history and socio-economic situation� The loneliness and difficulties in life experienced by many patients have potential to lead to poor health and treatment outcomes for the patients� The second theme relates to the patients’ path out of this vulnerable state� Patients described their vision of what it means to be healthy, and described the fierce self-determination they all possess which, if met with a desire to be well and a trusting health practitioner to be their guide, then this can lead to positive health outcomes� Patients described having trusted loved ones was also important for positive health outcomes, and for some the programme was able to help them cultivate positive relationships with their loved ones� The combination of the two themes indicated that the programme was both acceptable and feasible for most participants in most cases, but there are some areas where the programme could be improved or adapted to suit the context�

VULNERABILITY, DESPAIR AND MARGINALISATION:

Patients that participated in interviews expressed vulnerabilities and despair in their personal lives and socio-economic situations that are exacerbated by having MDR/RR TB, alcohol or substance abuse and by being hospitalised�

SICKNESS AND DEATH

Patients describe very powerfully both a fear of death and of sickness, and an experience of sickness and fragility caused both by TB and by the side effects of TB treatment� Practitioners described how patients experience ‘rather high anxiety levels at the admission stage because the patients do not understand their diagnosis at all.” [Fgd1] or as one patient described: “I want to put it behind me as a nightmare�” [IDI8] For many the anxiety experienced at the beginning of treatment can be exacerbated by the fear of the effects of the disease on their loved ones around them:

“Well, I was shocked that could happen to me. Firstly, I didn’t know how to survive it, how to break it to my family. Secondly, I worried so much about my kids, so that they didn’t get it. I worried about my husband… Psychologists were treating me at the hospital, as I couldn’t get over it, bad stuff kept coming to my mind.” [IDI8]

For some patients they were not just coping with TB: “If you take tuberculosis, HIV, Hepatitis C and social issues all intertwined, it is a heavy load altogether.” [FGD1] For some they discovered they had all three at the same moment:

“On the 15th I took a fluorography, and on the 23rd I was in hospital already. They found three diseases. And all of them are fatal. Well…that’s it, I am on treatment” [IDI11]

The above patient then also contracted COVID-19 and became suicidal once in forced isolation� Some patients were extremely sick from the TB, whilst others felt healthy despite the TB infection� One lucky patient said “I don’t notice challenges at all. I’m surprised myself. The drugs are easy to take. Very easy.” [IDI3] But patients in the IPD were struggling with weakened legs, and others described coughing up sputum and blood� It was similar with the pills, some had no side effects whilst others had strong side effects from the pills:

“I feel tired, weak, and I don’t want anything. It’s hard to move. Everything gets hard [after taking the pills]” [IDI10]

One patient worries so much about the side effects, and his situation of forced hospitalisation he cannot believe the treatment can be approved for use, despite staff indicating that he had repeatedly been shown evidence the treatment is approved: “are they legal, not legal? Until now, I have not had a chance to read or see any such certificates, documents, so to speak.” [IDI6]