Interviews were conducted with 24 SCR patient-participants (28 interviews; 3 participants had repeat interviews) and 20 HCW. Patient-participants characteristics are shown in Table 1. HCW were employed by both the Ministry of Health (n=12) and MSF (n=8), with a range of roles (Table 2).
Table 2: Health-care worker characteristics
Number of participants (n=20)
Ministry of Health
Médecins Sans Frontières
We focus here on findings that emerged relating to aspects of person-centred care, in particular, involvement in choice and care. While we explicitly examined participants’ views and experiences regarding shared decision-making for treatment regimens, findings relating to broader choices and aspects of involvement in care emerged inductively during data analysis. In situating these findings, we draw upon the conceptualisation of person-centred care and present findings around choice and involvement in care separately.
1 Perspectives on involvement in choice regarding MDR-TB treatment and care
Most participants appeared unfamiliar with the concept of people with MDR-TB choosing their treatment regimen, either in terms of being involved in the decision-making process, or in stating a preference for their treatment option. This lack of familiarity meant some struggled to imagine the idea of being involved in the choice of treatment, describing the concept as “strange”.
“Here we don’t have it [choice]. I didn’t have it myself. Right, they looked at my papers and they said I was resistant to something. And they told each other that I was going to have SCR. I didn’t understand what the difference was. What was SCR? I didn’t know that there is 2-year treatment with new drugs and 2-year treatment with old drugs.” P19
“Asking these things from the patients is unusual… it will be like a game if they ask from patients… In any case, it will not be like that. No patient will be asked which treatment option he/she prefers.” P02
The decision on treatment regimen was seen primarily as being the responsibility of the doctor, who was perceived as having knowledge and expertise, and therefore being best placed to make the appropriate choice in the interests of the patient. Most patients appeared to trust HCW advice, deferring to their doctor to advise on the appropriate course of action.
“They gave me [treatment] according to my results, then I wasn’t interested, and I didn’t ask. I didn’t take it seriously. I trust the doctors. They will help and do their best for me to get cured… I don’t have any information about it, that’s why I trust the doctors… If it is regarding the treatment, then anyway doctors have more experience than I do… I don’t know what drugs need to be taken, they are educated about it, that’s why I trust them.” P03
“I have never had concerns about it, I trust the doctors. Because I thought that they for sure knew, if they hadn’t known they wouldn’t have done that. Because they studied and they qualified.” P05
Several patients described following the doctors’ orders and the “rules” that were dictated to them.
“I just follow the rules… even if they tell me 9-month or 2-year treatment, I will take what is given.” P18
“We take what doctors prescribe us.” P16
“If the doctors say that this treatment will be correct for you, then there is no choice.” P19
This trust in HCW advice could be reinforced by seeking a second opinion before engaging with treatment, which was described by some participants:
“Here most people consider that whatever doctors say is right… as it is said, “Trust, but check”. Sometimes it happens when I am checked here, I also go there to be checked, in Tashkent. If the disease is too serious. Like TB or oncology… I have been checked not only here, I also went to Tashkent for examination. When I was sure that 9-month fits me then I agreed… in order to be assured that people here made the right decision. Because my life was depending on that.” P04 (university educated)
“Here people trust the doctor and take treatment. Sometimes they go other places without trusting the local ones, thinking that Republican facilities will know better than rayon [rural] level facilities. So, people go to Nukus [capital of Karakalpakstan], not trusting us at the rayon level.” HCW16
However, seeking a second opinion could also lead to individuals engaging with alternative approaches to treating TB. For example, one participant described her husband taking her to Nukus for alternative treatment, saying “the doctors here [rural area] don’t know anything”. She described this as leading to her taking incomplete treatment, which did not cure her disease and which she “regretted”. She said:
“I took hidden treatment… it was not proper treatment… after this treatment I was improved but it was not complete treatment, I just took it for 2-3 months.” P22
Those who did not trust HCW advice were said to be more likely to engage with alternative approaches to managing or curing TB, such as natural healing options:
“They trust in national customs. Some of them. They were telling me that if you drink camel’s milk it can cure many things, and some plants can heal TB. Not trusting the doctors, I think they will go towards them [alternative approaches]. Not wanting to take the drugs of the doctors, they think of being cured naturally.” 02P13
Within a context of unfamiliarity with shared decision-making and established trust-based practitioner-patient relationships, where practitioners hold expertise, several patients had concerns about whether they would be able to decide on their treatment. Many perceived themselves as having insufficient knowledge in comparison to the doctor, fearing that if they were to decide their treatment regimen, they would be responsible for the outcome, and experience blame if they chose the wrong option. This led to discomfort and lack of confidence in making such a choice.
“The doctors never think anything bad for you and they will give whichever one is best, it is better that doctors give treatment. Choosing it myself, I might be mistaken.” P24
“Selecting treatment in TB… when you give a person the right to choose, when he selects what treatment to get, finally, if the patient fails the treatment, then you will say to the patient that the choice was made by him. When the doctor decides on the treatment, then you can bravely say ‘it was the doctor’s decision and it didn’t help’.” 02P04
Choice complexity, and patients perceiving themselves as having insufficient knowledge to choose their treatment regimen could be exacerbated by the shock of receiving a TB diagnosis. Many described the period following diagnosis as difficult, which could undermine their ability to process information and participate in treatment decisions:
“At the start, I was not able to think over because of fear. I just trusted the doctors hoping that they knew.” P05
Some HCW raised concerns that involving patients in the treatment decision would imply that doctors lacked knowledge. HCW felt this could threaten their expertise and damage the trust basis of their relationships with patients.
“Here people are brought up like this, the patient comes, the doctor checks and the doctor gives a prescription… if you tell them that they have two options and to choose one of them, then the patient questions whether the doctor is going to treat me.” HCW14
“Here mostly they [patients] assess us [doctors] because we prescribe, and they will evaluate according to the end result. There might be some notions like ‘If I select myself, why do we need you?’ Or she might think ‘Is she asking me what drugs to prescribe?’. Maybe you are talking about the patients in developed countries.” HCW16
Some HCW felt that patients should not be in involved in treatment decisions as they will just choose the “easiest option” and go for the shorter treatment without comprehending the implications of their choice. This contrasts with the perspectives of patients regarding their preferences for treatment, as the majority stated that while they would prefer a shorter treatment course, it is also important that treatment be effective in achieving cure.
“They will continue choosing a short regimen suitable for them, for them it’s not interesting (they don’t care) whether their lung recovered or not.” HCW01
Several patients asserted that they had a right to know and be involved in the decision-making process, since it relates to their body, health, and treatment; they wanted to be informed about available options and have their preference sought. Some patients who had a high education level asserted wanting to be involved in the treatment choice, though the majority appeared more comfortable with the doctor deciding and preferred to be involved in an informative conversational capacity.
“The person [with TB] will make a selection consciously if he is explained what it is.” 02P04
“Of course, if they tell us like they can treat us with two types of treatment and then you would choose the one which you want for example… if they treat according to our wish it is good for us.” P20
While most patients appeared uncomfortable with the idea of assuming responsibility for treatment decision-making, examples were given of how they enacted choice in other ways regarding their care. For example, most patients described HCW advising them to initiate treatment from hospital, with some even describing this as being “compulsory”; many said that they refused and instead requested initiation of treatment from home or their local clinic.
“I said that I would not be admitted to hospital to start 2-year treatment and I asked the doctor if I could take treatment from home… Then I came home and at the beginning I talked to counsellors and they said that I can take 9-months treatment instead of 2-year treatment. Then I came here [policlinic] and started 9-months treatment.” P13
2 Involvement in care: ownership and responsibility
The vast majority of participants highlighted the importance of people with MDR-TB having information and understanding regarding their disease and treatment, for supporting their (sustained) engagement with treatment and care.
“I think the effect of each regimen will be good if the patients have complete understanding and knowledge of the disease and importance of treatment, no matter the regimen.” HCW13
“Ideally patients have a right and they should know about their treatment, what these drugs will do to them, what kind of side-effects they will have or not have, everything about treatment, they have rights.” HCW19
“If they are doing it for me, anyway it is my life, that is why I should know what is happening, what are they doing? It is said that it is hidden, but I want it to be told openly.” P14
Patients described having limited information and understanding, with some wanting more information and giving examples of where they had requested further information from doctors but not received it. This could potentially create an information gap and leave some patients susceptible to seeking information from other sources, for example from other people with MDR-TB.
“I asked what it is. She replied that it was not clear yet, but I had to be hospitalised. She didn’t explain anything in detail… She was treating me like I was a small kid… She didn’t say anything. Maybe she didn’t want to tell me. I didn’t like it, because I want to know when something wrong happens to me. I don’t want the information to be delivered to me via someone.” 02P04
“In [hospital] doctors didn’t give so much information, I myself searched how I can beat TB… maybe they are too busy, there are many patients.” P22
Patients appeared to trust information from other people with MDR-TB above other sources of information. Several patients described information they received from their peers that supported SCR or highlighted the difficulties that people faced with the longer regimen as supporting their engagement with SCR.
“When I was hospital, I found out about it [SCR]. Everyone was saying that if I took those drugs I would be cured.” P08
“I knew about 2 years as my sister-in-law that I mentioned took 2-year treatment. I was glad that I was eligible for 9-month, being worried that I couldn’t take 2 years... I was happy that it was 9-month treatment.” P16
“The information patients pass to each other is more powerful than what doctors or nurses tell them.” HCW02
“There are some educated patients who heard about 9-month SCR and they ask from us the possibility to be enrolled into 9-month SCR. because, in the IPD [in-patient department] they converse with other patients. There are some patients who ask that.” HCW16
It appeared important for patients to have evidence of treatment need and effect, additional to information. This evidence could be experientially conceived, such as through symptoms improving, or achieved through changes in sputum test results being communicated by HCW. Improvements in results appeared to offer evidence of treatment effectiveness, which could be drawn on to motivate sustained treatment-taking. However, results do not always improve, and changes in results or in treatment duration may not always be communicated or retained. Counsellors shared examples of patients being misinformed about their treatment length.
“They don’t know if in this month the results are positive or negative, and the information is not delivered to patients directly from doctors. Even though when patients strictly demand the provision of information on sputum result, it is really difficult to get it… because of doctors’ inattentiveness. When the doctor goes to medical rounds, he goes there unprepared… maybe they are afraid to provide incorrect information and want to have reliable information on hand to patients, not to mix up results.” HCW18
“Most of the time we have difficulties with the relationship between doctor and patient, there is no explanation from doctors’ side, [patients] are angry at the doctor’s behaviour, they [doctors] are shouting like ‘I am responsible for your health, and you should take these drugs which I gave.’ Like… that’s why we are here, counsellors. Many patients, many problems, many misunderstandings… ideally patients should know about their health, their results, ideally. But patients, always they are complaining: ‘the doctor didn’t tell me about my analysis…’ HCW19
Management of information that is shared with patients and misinformation about treatment length were seen as potentially undermining motivation for treatment-taking. Patients were described as preparing and adjusting their mindset to the length of treatment, and could feel betrayed and undermined if a change was not clearly communicated:
“They tell patients that they will take treatment for a short time, they don’t say 2-years… And then the patient sets time for himself and prepares, for example if the patient is going to start 2-year treatment, but the doctors say that it will be 6-months, then anyway after 6-months patients will stop taking the medication, also because they will start feeling OK.” HCW18
Involving people with MDR-TB in their care, through dialogue, information, and seeking their preferences, and ensuring people with MDR-TB have accepted their diagnosis and feel ready for treatment, were seen to increase individuals’ sense of responsibility over their treatment-taking. Several HCW described such responsibility as being important for motivating treatment-taking, facilitating people with MDR-TB prioritising treatment-taking over other areas of life, and being able to continue.
“The treatment is not mandatory here. If you involve and ask patients, then the responsibility will be over the patients… If you don’t put the responsibility on the shoulders of the patients, they start being irresponsible and not taking drugs… If the patient really wants to complete the treatment, the patient will take treatment responsibly and finish treatment.” HCW15
“If the patient has understanding about the disease and drugs, and he knows how to take and what are the side-effects, that patient can take drugs himself.” HCW14
Several participants felt that directly observed treatment (DOT) placed the emphasis of control for drug intake with the observing HCW, rather than the individual taking treatment feeling responsible for their treatment-taking:
“Anyway, doctors were making us take the drugs... They were controlling it. They would be sitting like this and making us drink the tablets.” P05
However, several HCW had concerns that without such control, patients would not be able to adhere and self-motivate their treatment-taking, suggesting that while there is recognition of the value of an individual’s responsibility for their treatment-taking, there are doubts and distrust as to whether this is achievable in reality:
“To have good treatment and to have good outcome. For example, it is needed to stand in front of the patients when they take drugs… There are some patients, adherent ones who tell us that it is very easy not to take drugs if someone doesn’t remind them about taking and not control them strictly.” HCW13