Background
Methods
Study design
Recruitment
Participants
Data collection
Analysis
Results
Participants
Characteristic | Brazil | Russia | India | China | South Africa |
---|---|---|---|---|---|
Self-reported gender | |||||
Female | 5 | 4 | 3 | 3 | 4 |
Male | 3 | 4 | 5 | 5 | 4 |
Healthcare coverage | |||||
Public | 8 | 8 | 6 | 7 | 7 |
Private | 0 | 0 | 2 | 0 | 1 |
Both | 0 | 0 | 0 | 1 | 0 |
Socio-economic statusa | |||||
High | 0 | 0 | 0 | 0 | 0 |
Medium | 6 | 4 | 6 | 6 | 4 |
Low | 2 | 4 | 2 | 2 | 2 |
Not provided | 0 | 0 | 0 | 0 | 2 |
TB treatment status | |||||
1st line | 4 | 1 | 3 | 2 | 4 |
2nd line or more | 2 | 4 | 1 | 5 | 0 |
Treatment complete | 2 | 0 | 4 | 1 | 4 |
Treatment break | 0 | 3 | 0 | 0 | 0 |
Risk factorsb | |||||
None | 4 | 1 | 3 | 6 | 3 |
HIV | 1 | 3 | 0 | 0 | 4 |
Diabetes | 1 | 1 | 1 | 0 | 1 |
Childhood TB | 2 | 0 | 1 | 0 | 0 |
Depression | 0 | 2 | 0 | 0 | 0 |
MDR-TB | 0 | 2 | 0 | 0 | 0 |
History of typhoid | 0 | 0 | 2 | 0 | 0 |
Childhood homelessness | 1 | 0 | 0 | 0 | 0 |
CV disease | 0 | 1 | 0 | 0 | 0 |
Alcoholism | 0 | 2 | 0 | 0 | 1 |
Hepatitis | 0 | 1 | 0 | 1 | 0 |
Hypertension | 0 | 0 | 1 | 0 | 0 |
Overcrowding | 0 | 0 | 1 | 0 | 0 |
Works as a miner | 0 | 0 | 0 | 0 | 1 |
Homelessness | 0 | 0 | 0 | 0 | 1 |
Smoker | 0 | 0 | 0 | 1 | 0 |
Number of family participants | 6 | 6 | 19 | 0 | 21 |
Households with ≥ 1child: | 2 | 4 | 5 | 4 | 4 |
No preventive medication | 0 | 0 | 2 | 4 | 1 |
Preventive medication | 0 | 1 | 2 | 0 | 2 |
Previous preventive medication | 0 | 0 | 0 | 0 | 1 |
TB diagnosis for child | 0 | 0 | 1 | 0 | 0 |
Child status not disclosed | 2 | 3 | 0 | 0 | 0 |
Patient health status
Patient journey
Pre-diagnosis
“The symptoms were there for the last 2 ½ months but I did not know. He was coughing a lot, so I asked him to go to the doctor. He did not listen to me. He feared talking to the doctor.” Relative of TB patient, India (IN19).“One day, I started to have fever in the afternoon. After work, I went to receive infusion in a small local clinic. I remember my body temperature was 39.5 to 39.6 degrees Celsius. The doctor said my condition was very serious, so he prescribed 5 bottles of infusion to me, and I received all of them. But my fever persisted after such a lengthy infusion.” China (CN09).
Diagnosis
“[I thought] it is some kind of prison disease, which occurs more and more often in people who have served a sentence somewhere. That is, more disadvantaged groups of the population. I always thought about it in this way until I met it myself.” Russia (RU10).
“[The nurse] said if you don’t take your meds, they send you to [a TB hospital] and then you will receive extreme treatment. They inject you with needles and stuff. That is if you don’t use this meds at home, they will send you there and stay for six months.” South Africa (SA05).
Treatment
“I take many anti-TB pills every day, covering 4–5 classes, about 20 tablets in total. Sometimes, it’s difficult for me to take medication, as I was quite reluctant to take it initially, but I had no choice, but to take it as a treatment.” China (CN11).
Monitoring and adherence
“Sometimes [redacted] forgets to take the medication, and I argue with him because if one of us forgets the treatment and the other one doesn’t then it won’t work, if we don’t take it together, it won’t work.” Brazil (BR04).
“By December I was already feeling like I’m already cured, I nearly decided not to continue with the treatment.” South Africa (SA01).“Actually, they didn’t tell me about the details then. It was very important to emphasize it to me, but the physician didn’t do it. If he did, it would draw my attention and it won’t lead to drug resistance, as I often missed the dose I was supposed to take.” China (CN06).“I live in a little town which is quite far from the city. I can either go by bus which takes at least an hour and a half, or I can get to the nearest bullet train, but there aren’t many trains available and they are expensive.” China (CN08).
Completion of treatment
"My TB is cured, and I want to start again with my studies. I was preparing for a railway job but I had to give that up because of TB. Now I will start my studies again and apply for a government job." India (IN04)."Thanks to this [TB] I got rid of bad habits, I do not drink alcohol now and smoke less… And I found a job, and I earn some money at the moment, during the first period my brother supported me fully, thanks to him, and my mother helped what she could.” Russia (RU05)."After these three months since I have recovered, this is what it has brought me, the willingness to fight, to battle, also to take even more care of my health, not just mine but also of people around me, and take this story, my testament, my lived experience with TB… So it’s a goal in my life, to spread information among all those who are close to me." Relative of TB patient (BR01).
Access to services
“In public [sector healthcare] those nurses don’t care, I remember when I accompanied him, I was told I was not allowed to get inside, so he went in on his own. You go in pick up whatever you need and get out because those people don’t have time for anything.” Relative of TB patient, South Africa (SA01).“In the Government hospital, the doctors do not listen to us. They come when they wish and give medicines. As it is, the doctors do not listen to poor people. I had to buy some medicines from outside.” Relative of TB patient, India (IN17).“Obtaining the medication – because the drugs can only be obtained in the hospital, you can’t buy them in retail pharmacies. If I run out of my medication, I wouldn’t be able to buy it from the retail pharmacy, I would have to go the hospital, which is inconvenient.” China (CN08).
“They told me I had a resistant form of TB and that the treatment is very, very long lasting. At first, they said I would have to be hospitalized three to four months and that then I would be able to go home but when I got to the hospital, the ‘girls’ told me that three to four months is optimistic… In short, eight months. Eight in the hospital and a year after the hospital. That was a shock.” Russia (RU12).“In my room there were all young women and all were so great. All of them were socially adapted: an accountant, a paediatrician student. So, let’s say it was good company.” Russia (RU01).
Thematic analysis
Economic hardship
“The main problem is money. There is no problem greater than financial problems.” India (IN01).“I had to keep away from work because there was a lot of dust involved.” Brazil (BR15).“I cannot officially get a job, and I cannot unofficially either. But, what? Am I going to work as a loader? I cannot. This has seriously affected my finances… And who would hire if information comes out that there was TB? You will not get a job. I received a disability [payment].” Russia (RU05).
“I also buy medications at my own expense [for gastric side effects] i.e. for TB, everything is free of charge due to the medical insurance policy, everything is fine, but if there is something secondary or something else not related to the diagnosis, then that is at your own expense.” Russia (RU07).“We are not educated people. I just wanted my child to recover. We are poor people; we could not work during lockdown. We had to borrow money from many people and requested help from doctors too. I thought my child would recover, but he did not. We were very stressed out.” Relative of TB patient, India (IN21).“To avoid delaying treatment, the doctor told me to take these four drugs upon diagnosis, and urged me to buy them elsewhere, as they were unavailable in the hospital. My wife found they were unavailable in many pharmacies either. Finally, she found them in several pharmacies, from where we bought them in early stage.” China (CN09).
Stigma associated with TB
“A lot of my friends kept away from me because of this, because that’s what people know, that it’s contagious, but they don’t understand that the person on the other side is suffering as well, and we don’t only suffer a little bit, at least myself, it’s a very painful process, very painful, very complicated.” Relative of TB patient, Brazil (BR01).“The community was no longer as close to us because we are staying with a person that has TB – people at the queue at shops would turn around and come back when we have left.” Relative of TB patient, South Africa (SA14).“When a person has TB he becomes very annoyed as he has to go through a lot of things, plus there also comes a phase were people start avoiding you, they feel that if we come in contact with this person even we might acquire it.” India (IN01).“A person who has TB is not somebody who is well-regarded.” Brazil (BR04).
TB and HIV
"Now I’m scared I’m HIV positive, I have TB and now there’s Corona [COVID-19], what’s going to happen when I have all three of them?" South Africa (SA18).“So people were really scared, I think they are now more afraid of TB than HIV. I told my neighbour that I was diagnosed with TB and luckily she doesn’t talk much but still I was aware of their behaviour when they came by to do my laundry they would wait outside to hand it over to them and when they are done they would leave it by the door." South Africa (SA10).
Disruption to family life
“Life at home isn’t the same because I had to begin separating my cutlery and a glass – my clothes had to be washed separately, we have to clean down the house and open the windows to let the air circulate.” Brazil (BR15).“I’m worried I may infect my parents. So I’ve had to reduce my interactions with them, the time spent with them, the number of occasions I’m with them. And as they get older, they become confused and they don’t understand why I stay away.” China (CN08).“Our house always used to be full at weekends, friends would come around to watch films, sometimes we would make lunch, get pizza and sit and watch films, and then suddenly the house was empty.” Relative of TB patient, Brazil (BR01).
Mixed effects of COVID-19
“During the pandemic I was unable to go to the hospital for my regular follow-ups and prescription renewal, and so because of that my condition worsened, and I eventually ended up infecting my family.” CN08.
Discussion
Conclusions
Acknowledgements
Declarations
Ethics approval and consent to participate
-
the systematic gathering and interpretation of information about individuals, organisations and marketplaces;
-
using the information gathering and analytical methods and techniques of the applied social, behavioural and data sciences;
-
its purpose is to gain insight or support decision making;
-
the identity of Market Research subjects will not be revealed to the user of the information without explicit consent, Market Research has no interest in the individual identity of Market Research subjects;
-
no direct action e.g. a sales approach will be taken in relation to individuals or organisations as a result of the Market Research (except following up adverse events when permitted), Market Research is not a commercial communication or a selling opportunity.