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
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