SELF-DETERMINATION, GUIDANCE AND ACHIEVING A STATE OF HEALTH ����������������������������������������������������������������

again in the future� This healthy state was described in the context of escaping, being in nature, and having a sense of future� Patients describe an idea of health as being: “not smoking, doing sports, riding a bicycle, fresh air. I saw happiness on this man’s face. I mean, he defeated the disease.” [IDI1] or “I don’t lose heart… and once a day I exercise – I go out to over there. Well… I keep my spirits high, telling myself everything’s going to be just fine.” IDI10

The experience of forced treatment would take away this important outdoors: “It’s only one thing here… there’s no freedom. Little, little freedom we have here. I’d like to have more. More space to go for a walk. We don’t have it here - just the fence and concrete.” IDI5

Patients described a fairly individualise image of healthiness, characterised by being strong and in the outdoors� But, whilst it wasn’t mentioned explicitly in the context of being healthy, many patients had also described vividly the importance of close relationships with those around them that they trust, which is clearly important in terms of mental and social health�

ACCEPTABILITY OF THE PROGRAMME

The two overarching themes together indicated that the programme was well designed to deal with the fragility and marginalisation experienced by patients in the cohort� But at the same time the loneliness and isolation experienced by patients, which can be worsened by long periods of hospitalisation, could potentially undermine the successful outcomes seen in most patients� Patients self-determination, coupled with the personalised guidance given by the multidisciplinary team worked well together to bring patients back to a state of healthiness which could involve feeling strong, free and in the outdoors whilst also helping patients improve their social and economic situations� One practitioner participant described that: “I believe the project is highly effective judging from my feelings, from the discussions with patients and colleagues.” [FGD3]

IDENTIFIED GAPS AND SUGGESTED PROGRAMME IMPROVEMENTS

Practitioners and patients indicated a number of ways the current approach could be improved, these results were fed back to practitioner participants, and improved upon as part of an iterative approach�

EXTENSION OF THE MULTIDISCIPLINARY PATIENT CENTRED APPROACH

Ministry of health staff described how TB patients with drug and alcohol problems tend not to stick to treatment, and get into a vicious cycle:

They are motivated only when they feel bad, when they have fever at the point of 39 degrees, hemoptysis, when their lungs fall apart – that’s when they begin to plead, to beg, to say they will follow the treatment. As soon as we have stabilized them – after they have stayed on treatment for several months, and the cavities in their lungs have closed up, and their temperature has gone down – alas, they feel well, and nothing interests them again, they abscond and the story repeats in the course of the next few years to the point when they have developed a chronic disease and an MDR form, and the whole cycle goes on and on until the point when they are completely destroyed. [FGD2]

For this reason, perhaps it might be worthwhile to utilise the approach for non-drug resistant TB cases, rather than waiting for drug resistance to develop before taking this more immersive approach for patients with known adherence challenges�

Furthermore, patients complained that doctors would only treat their tuberculosis, and would not take into account other aches and pains that they were experiencing in other parts of their body, or would not treat other co-morbidities such as Hepatitis or HIV at the same time as their tuberculosis� For this reason, the multidisciplinary approach could be extended to include other medical specialities�

ENHANCED ENGAGEMENT FOR PATIENTS WITH SUSPECTED PERSONALITY DISORDER

Participants described how the approach could be improved for certain patients� MOH staff describe that patients with addiction to drugs other than alcohol or those with a significant criminal history are often not motivated with treatment and are prone to manipulation, and that harsher measures are needed to get them through treatment:

“it gets most challenging with the druggies. Cause, as a rule, they are engaged in the drug deals and have money. Erm, and they are, in fact, completely delusional, and it is very difficult to find something that will motivate them. Most often they manipulate and use all the aid that’s provided in their personal interest. And therefore, when working with such people we need, and it is our common opinion, we need either to isolate them or, (Sighs) to find individually tailored psychological approaches, or psychiatric methods, well, whatever is there. But this is the most difficult group there is.” [FGD2]

Some patients in the cohort were challenging, despite not necessarily being in the above category� For example, those who “You spend hours on health education, several times, one session after another… Well, they just don’t hear you.” [FGD3]. This desire to not hear health education was evident in several patient in interviews, for example one patient refused to believe that he had TB after 18 months of treatment or that the treatment was proven to be effective, and another who was scared to share a glass with someone who had HIV for fear of catching the disease:

“There were also HIV patients. Initially, I was sharing a room with an HIV patient. How do I know if he is having AIDS? I was sharing a glass with him. This is the way they treat us.” [IDI7]

According to the MSF project psychiatrist “the main problem is personality disorder” [FGD1], as it is these patients that are difficult to reach an agreement with, particularly those that

have not been diagnosed and treated for their personality disorder� Those with a diagnosed personality disorder were more likely to end up in a forced hospitalisation centre, as it was too difficult to provide a tailored psychological approach for them with the current resources� This tailored approach could be a token or incentive system, where rewards are provided in the short term for adherence or treatment compliance, rather than relying on the ‘reward’ of being cured of TB after 2 years, especially in the case that the patient feels well� This provision of incentives is not a simple concept however� One patient, who was a renowned and capable manipulator with a personality disorder who had had TB for 20 years admitted that “You know, I got a flat because of TB. We live in a 3-room flat.” [IDI7] For him the provision of a flat was motivation for him to keep having TB, though he also stated “If 20 years ago I knew that TB… I would sacrifice 1 full year instead [of taking the flat].” The idea around incentives and tokens would be to help patients with personality disorder make the right decision upfront�

Behavioural work or very engaged psychotherapy on top of the standard counselling would also be important for patients with personality disorders, and work would need to start in IPD then continue in OPD� It should be noted that this approach is very resource intensive, and there are not enough staff in the project with the appropriate skillset to carry this out� In general, psychiatrists reported to be cautious in making psychiatric diagnoses such as for personality disorder, or for a formal diagnosis of substance abuse, as there are negative consequences to having a formal diagnosis for patients, and not necessarily any benefits. One recovered opioid addict described the diagnosis of drug addiction:

“There was not much of an advantage. I’m saying again. I stopped only when I myself came to it. Not because of being registered …. I have been registered for… Let me count exactly… 13 years. And until the moment I took my own decision, I had been taking drugs. [IDI3]

TIMELINESS BETWEEN DIAGNOSIS AND TREATMENT DEBUT, AND ENHANCEMENT OF CONTACT TRACING/ACTIVE CASE FINDING

When it comes to TB diagnosis for some patients, the process of being diagnosed and starting treatment seemed to be quite slow� One patient mentioned it was 2 and a half months before starting treatment, whilst for others it was a matter of weeks� Interviews with patients also indicated that when an MDR/RR TB case is found, more extensive case finding and health education could be beneficial as:

“I visited one place and the doctors told me later that I shouldn’t have stayed at that place. There were people with TB who ignored it and never showed up to the requests sent to their registration place (place of living). They had known they were ill, but they didn’t warn us about their disease. This is where I got TB.” IDI5

If someone is positive, it is usually just their close family that are traced, but for those who are known to have alcohol or drug abuse issues, the tracing could perhaps go further�

RELATIONSHIP BETWEEN MSF AND MOH STAFF

Furthermore, the working relationship between MSF and MOH staff, though usually good, was not always so:

“not all MSF employees establish good relations with the Institute’s staff. Whilst in some cases MoH staff would not collaborate with MSF… a [health worker] who used to work here… He had prejudice against MSF and he repeatedly mentioned it. Well, as a result, he was prejudiced against me as well. He refused to collaborate. Now he works at XXX but we don’t interact at all, he does not even pick up his phone when I call him.” FGD1

“The only drawback that I see in our interaction is MSF’s staff turnover, … by the time we get used to each other and the patients get used to him too – this time, it seems to me, is lost somewhere.” FGD1

FGD participants also complained that MSF doctors are not in control of medical decisions for the patients which can cause issues if they reach an agreement with a patient that is then not agreed by the MoH doctors who take decisions�

“on the part of MSF... we want them to cover more. They don’t, for example, keep a medical history, don’t keep drug charts, for example, or aren’t engaged in stopping adverse events in a patient “ [FGD1]

This could be improved if MoH doctors were capacitated to take a more patient centred approach to treatment� In some cases, the role of the MSF doctor role was described to be “settling conflicts and bringing the patient back to treatment”. MSF doctors have more time to spend with each patient, and therefore can have more ‘patience’ for each one� Furthermore, MOH considered that “the work that MSF does now with so many staff, in fact, can be performed with fewer people” [FGD2] and this perspective was generally agreed within MSF, and actions taken to expand the number of patients�

MULTI-DISCIPLINARY APPROACH

Multi-disciplinary working, where the patient is included with other specialists as a decisionmaker is not yet normal in the Belarussian context:

“a TB specialist may not communicate well with an infectious disease specialist. Doctors believe you have to perform your duties and you have to do that well. And that’s sufficient, in general. And you don’t need to consult a patient. Well, this is our peculiar Belarusian feature.” [FGD1]

Occasionally the person-centred vs traditional medical approach do not always work well together and it ends up being “a crayfish and a swan who pulled the wagon in different directions” [FGD1]

This multidisciplinary, team work approach could also be taken further� For patients who will not accept a decision or listen to health education, more group work could be beneficial so patients can learn from others who have already lived the consequences� For others, more multi-disciplinary interventions by a group of practitioners might be persuasive:

“group meetings with different specialists organized for the patients are efficient in such cases [those who will not listen to health education]. Namely, the MSF doctor, the MoH doctor, a psychiatrist, a counsellor, a unit head, everyone gives his vision on the disease so that the patient gets the joint opinion from many specialists.” [FGD3]

PATIENT CENTRED APPROACH

One patient, who had just been informed that doctors were taking him off treatment due to poor adherence, wondered how and why decisions would be taken about patients without including patients in the consilium decision making process� Though, some stated that whilst the person-centred concept was initially vague and not usual for their practice: “We don’t consult a patient this is not the Belarusian way” [FGD1]. However, for some MoH staff, this harsher approach is still considered superior for some patients, though some ambiguity is clearly understood regarding the benefit of a patient centred approach vs an approach that is highly effective in ensuring treatment adherence but rather inhumane:

“it is my conviction, and I will stick to it, that if we succumbed less to your staff’s position and were more tough with the patients and followed the policy envisaged by our legislation proceeding with the forced treatment, then several patients who were lost to follow-up, would have completed their treatment. But it all turned out that we were indulging them (literally – stroking their hair) and they liked it a lot – in fact, it was a positive thing here and for many patients it was important to get this kind of support, they enjoyed it and certainly they felt treated as human-beings – what doesn’t normally happen often in their lives, and that probably lead to at least one of our patients, for sure, didn’t complete her treatment.” [FGD2]

But MSF’s approach does reportedly try to deal with this:

“Of course, we had such negative cases where a patient would come back to his environment where he lived, and that might lead to certain consequences when he skipped treatment for a few days. We tried to control such cases, and explained the importance of this to the patient, so that, he could solve his social issue on the one hand and didn’t face problems on the other.” [FGD1]

Furthermore, some patients do request forced isolation, and one ex-opioid addict partially backed up the efficacity of the threat of harsh treatment by saying that he was able to stick to treatment for the following reason: “I don’t know. Maybe I was partly afraid of being sent to a closed-type hospital. I don’t know. Sometimes I wanted to give up, but something was deterring me. [IDI3] Though the hesitation he expresses in this statement isn’t fully convincing, and perhaps this fear of punishment can be achieved through other means�

SCALE UP OF VIDEO DOTS

During the course of the project, video DOT was utilised more due to the COVID-19 situation� Patients and health workers did sing the praises of video DOT:

“Video-observed treatment is a huge success in solving those issues. It allows a patient to live beyond the schedule of dispensary daily visits once or twice a day.” [FGD1]

Though it isn’t available for all patients, notably those with poor adherence or with side effects or co-morbidities that need constant monitoring could not take part in video DOTS� However, some patients in this category did prefer the idea of video DOT: “Well, first thing, they should give the pills in one round for every ten days at least, so that you don’t have to go there every time.” [IDI10] Notably however, the same patient did admit that, when in a binge drinking session, he would not take his TB pills:

“but once a month – then I drink for three-four days. Once a month that it happens. I don’t go to get my pills then, that’s why I have problems… it is my rule, you know, I don’t take pills together with vodka. Because I have problems with my liver. So you have to choose – it is either this or that.” [IDI10]

But, having the pills at home with him, would undoubtedly mean any drinking induced treatment interruption could be shorter� Video DOT isn’t popular amongst all patients however: “I fell in love with a young man, I go [to the OPD] for him. I don’t want to switch to viber [VideoDOT].” [IDI8] For such patients, the support and love they can get from meeting and spending time with people in a similar circumstance outweighs the benefits of video DOT treatment� It was not uncommon for patients to fall in love with others in the treatment programme, and often this was very beneficial for them.

SCALE UP AND ROLL OUT OF THE PROGRAMME

Focus group participants described that the main obstacle to roll out of the programme at scale would be “Financing. The primary challenge. … and probably, HR resources” [FGD2]. In particular “financial benefits to health care providers�” [FGD1] could be important, to ensure that health providers are incentivised, or at least are adequately resourced, to go the extra mile and spend the time with patients�

Beyond this resourcing, staff members in MOH would need more training in communication, particularly how to communicate with patients who have alcohol and substance disorder or other mental health disorders� Furthermore, psychological first aid and perhaps some other basic psychiatric and counselling skills i�e� active listening could be more widely rolled out, in combination with a more substantial supportive supervision system for staff in the programme to ensure that all health workers are learning the skills needed to carry out multi-disciplinary and person-centred care whilst avoiding professional burnout� Practitioners suggested that some might be better candidates to employ this approach than others, as not all are motivated to do more than “to perform a mechanical set of actions, do a monotonous work and leave” [FGD1]� Indicating that perhaps if it were to be rolled out certain staff should be selected to implement it� In particular for roll out to the public sector, social workers would need to be employed as standard which is not currently the case�