Table 3 Quotes; trust and hope, fear and scepticism

Trust and hope quotes

“I was not scared at the beginning...[of] six-month treatment. I mentioned that my mother was treated [with CT]. I agreed to be a part of clinical trial believing I would be cured if I take drugs without missing any drug. I am interested in it myself.” IDI04 (female patient)

“Patients play crucial role in influencing each other… They trust each other even more than us [HCW].” FGD01, R7 (HCW)

“Another thing that I think can help… they really trust and believe if they can speak with another patient that completed the trial. Of course, I think it is impossible, you create bias, I do not know. But if they can do that, I think that can help. Because they [patients] trust their peers. Because this is somebody who passed through and completed... So, if that was possible, I think the recruitment would go up very fast.” IDI13 (HCW)

“They [patients] need to trust, they need to have confidence.” IDI06 (female patient)

“I joined voluntarily, as I was sick. I thought I would be cured if I took this treatment. Even I did not discuss it with my husband. I believed I would take drug, and if I took drug, I would be cured. I am encouraging myself to continue with treatment.” IFI06 (female patient)

“I agreed to be a part of clinical trial believing I would be cured if I take drugs without missing any drug. I am interested in it myself…It is written that in case there are side effects they [CT HCW] will treat themselves. Therefore, I trusted, we are getting better care now compared to the previous standard care.” IDI04 (female patient)

Fear and scepticism quotes

“People are afraid of the clinical trial… as research has never been done in Karakalpakstan before. This is something new for Karakalpakstan.” FGD01, R1 (HCW)

“They might think that why they are being given clinical trial, why not standard treatment? They might think they are being used…how to say this…eh…they think they are being experimented [on].” IDI21 (HCW)

“At the beginning, any person who comes here to join the clinical trial, before signing the consent, they will have thoughts – they do not want to be ‘used’ as it has the name “trial”. It is like a rabbit in an experiment; especially if that person is a patient. You know for the patient; everything is very sensitive.” IDI08 (Male patient)

“There are patients who say that, ‘oh I don’t care if you are experimenting but standard of care is a tried and tested regimen and I prefer to go with something that is, you know, going to work for sure. I don’t know if your treatment is going to work or not.’” IDI24 (HCW)

“There are kind of rumours like: ‘If you pay money they put you in [the short course arm]…’ Randomisation is not easy to understand.” IDI13 (HCW)

“They came to TB2 and they saw other patients, they heard from them, maybe stories… and then they refuse to continue with CT.” IDI18 (HCW)