Baseline characteristics of patients interviewed showed a male predominance (86%) with mean age of patients being 37 years (7.8 SD). Patients travelled on average 9.8 km to the attending facility (Table 1). A total of 15 clinicians with varying experience (two Medical Doctors, one Operations Manager, nine Professional Nurses and three Enrolled Nurses), were recruited for in-depth interviews. The average duration of employment for the clinicians was 17 years (2.7 SD).
MAIN THEME 1: Patient level perspectives regarding adherence to TB treatment
Most patients reported that they were given TB information by clinicians during their clinical visits. However, it appears that the information received by patients did not translate into improved TB clinical outcomes as evidenced by the inability of this cohort of patients to complete their TB treatment regimen. Further, this qualitative study forms a part of a larger study confirming the high LTFU rate, the results of which are published elsewhere. Often patients demonstrated an understanding of the disease but the social determinants of health at play within the community, such as diminished educational and employment prospects, had far reaching consequences that included TB treatment LTFU, fear of disclosure and stigmatization. Patients felt that the TB messaging received was inadequate. The sub-themes derived from the interviews drew attention to the impact of health literacy on TB treatment outcomes and suggested that the rigid implementation of the current TB treatment guidelines stifled active patient involvement in their ongoing treatment. Commonly reported reasons for LTFU in the literature (including long queues, financial difficulty attending clinic and unreliable transport) were inconsistently reported in this study and were not considered for the analysis.
Subtheme 1.1: Gaps in health literacy related to information on TB treatment adherence
Most patients demonstrated adequate knowledge of the TB screening procedures and TB symptoms. However, patients did not seem to understand the TB treatment process and importance of their roles and responsibilities in achieving successful TB outcomes. Most patients described the TB messaging received as focussed on the importance of adhering to TB treatment for the ‘entire duration of therapy’, despite potential side effects of the TB medication. “Yes, they tell you that you have the TB illness and tell you that if you take your treatment correctly, comply to your treatment you will be fine. They make you feel good that you end up accepting the fact that you really have TB” (#4). Patients did not seem sufficiently prepared regarding the side effects that were experienced while on TB treatment. “Yes, they (referring to clinicians) did explain to me but though they have explained something, when it happens to you it is not the same as talking about it, when it is happening, it is you who feels the side effects of the treatment so even when they mention that, they do explain but when you experience it somewhere, that does not sit well.” (#5).
Importantly, patients seemed to lack knowledge on the length of treatment, nor that the treatment would have to be continued significantly past the point where the patient felt a subjective improvement in health. One patient described his experience as follows: “She (referring to clinician) did not tell me, she never told me [to stop] but I decided to stop the treatment. She told me that I will be finishing taking treatment on the 12th, they said I should give another sputum to check if TB is still active or what. When I went to the clinic, I produced sputum and I was okay. I was okay, my body weight was back, and it’s when she told me that you will be completing your treatment” (#7).
Subtheme 1.2: Challenge to individual TB treatment plans
Some patient’s decision to discontinue treatment was in response to unmet expectations from clinicians. One patient felt that the rigidity of clinicians in failing to restructure the management plan to accommodate their requests resulted in them interrupting their treatment. “I was treated well but they could not when I explained to them that I will go away for work for this long (one month) and I am asking for treatment that can last for the time I am away. They could not give me like that, the way I was asking them, that is the only reason that made me to end up defaulting now” (#5).
Some patients also felt that the clinicians were not listening to their concerns and expected them to adjust to the TB medication. “I vomited when I took the pills for the first time and I had a bit of diarrhoea. To overcome these, I went back to the clinic and they gave me soft porridge powder and told me that I will get used to the pills and they will get used to my system or body” (#4).
Patients also felt that some of the existing systems at the public health facility were not conducive to them accessing TB treatment efficiently. “I am delayed sometimes, I go at five o’clock in the morning and come home at six o’clock in the afternoon. They are inconveniencing us. It is just the fact that when I visited the clinic due to epilepsy, when am I supposed to go that other side [to get TB treatment], they are delaying us, and I would just leave it like that” (#1). Another perceived obstacle to patients not adhering to their TB treatment plans could be the negative attitude of clinicians towards patients. “I was not feeling okay and I was coughing while at work and I lost weight and I was taking no TB treatment up until the manager/white guy came to fetch us to come back from there. I went to take my treatment after I came home, and the nurse/sisters reprimanded me there” (#3).
“I didn’t like the way she treated me and I did not allow her and looked at me , asked why did I have this and this on my neck, we were quarrelling , both of us you see…. I did not do anything, I just left” (#6).
Sub-theme 1.3: Motivators to adhering to TB treatment
It seems that patients could be willing to adhere to their TB treatment if they are given the opportunity to be constructively involved in their health management.
“Uh, I think what can be done in situations like mine, where it is work related. I think if they can try and do as I pleaded, they should understand our complaints and our reasons because we are asking, and we are willing to get treatment the way we are asking. I think that is the solution that can be done’’ (#5).
Patients also seemed to express a need for individual centred counselling which could help them develop and manage their personal TB treatment plan. “I suffered, and I could not accept the news, but I eventually accepted because it was checked from the lab sir. I eventually accepted because I was counselled. They told me to come for my treatment that is when I believed and accepted that I do have TB” (#4).
MAIN THEME 2: Clinician level perspectives regarding patient adherence to TB treatment
Many clinicians felt that improving the patient’s TB knowledge would reinforce adherence to treatment and thus focused on sharing information on treatment completion, side effects and infection control. However, the inability of clinicians to establish rapport with patients or to identify social support challenged TB treatment adherence by patients. Clinicians perceived this as patients not following their instructions despite what they considered lengthy TB education. Having said this, the clinicians concurred that their medical management of TB lacked the socio-economic dimension to treat a social disease of this magnitude.
“Ehm from the training side with clinicians, ehm mainly its ehm, they emphasise on…as we also know as clinicians that emphasis is mainly on them, informing patients about taking their treatment on a daily basis and the importance and when to take treatment mainly. But training, its, it doesn’t, you know the training that I have attended doesn’t really emphasise on the socio-economic factors of our patient,” (#8).
The subthemes below highlight how the clinician’s individual interpretation of the national TB guidelines resulted in significantly different key messages being communicated to patients, how the fragmentation of the health system leads to ongoing patient and clinician frustration; and begins to outline the importance of community support in addressing TB.
Subtheme 2.1: Lack of standardisation of communication regarding TB Therapy
Clinicians felt empowered from the ongoing TB module training aligned to the National TB Guidelines and this was reflected broadly in their understanding of the TB transmission dynamics and their demonstrated competency in TB care provision. However, the ability to transfer this information successfully to all TB patients was possibly lacking. “I think we still have to work hard, very hard for the patients to understand TB. They really don’t understand it, so there are few that are really understanding very well but I still think we still have a lot of work to do, to teach patients more about TB (#19).
Some clinicians anecdotally correlated successful treatment completion with the patient’s knowledge of TB, as they believed this indicated that the patients were taking their illness seriously. “If they do not know, obviously if you don’t have the reason why you are doing something, obvious it’s not going to do it mos(local South African term indicating an expression) neh but if you have knowledge that you are supposed to take your medication so that you can be better, obviously you will take the medication correctly” (#3).
During the consultations, few clinicians discussed information on the complications of interrupting or stopping treatment; or regarding the continuation of treatment should patients transfer to other facilities. When transfer letters were negotiated, there was no indication that the clinicians reinforced the dangers of stopping or discontinuing treatment. “…we do encourage them that when you know that you are going somewhere, come and get your transfer letters so that you can get the continuation of your treatment” (#19).
Subtheme 2.2: Dealing with patient frustration and health system inadequacies
A few clinicians felt that providing TB services at a single focal point allowed experienced staff to effectively relay information on TB transmission, therapy and adherence. This interaction would create the opportunity for patients to express their expectations of clinicians and clinicians would in turn improve patient rapport and establish a supportive, therapeutic relationship. Familiarity and consistency within the health service would reassure the patient and strengthen the trust in the care provided; potentially allowing for the disclosure of difficulties. “I am like a parent to them, you are free to them, you talk, you educate the person so that he can come back again. When he is having problems though he will not be taking treatment from you, he is able to approach you to ask” (#12).
Some clinicians felt that the staff rotation hindered rapport with the TB patients due to short rotation periods at the TB focal point. As such, clinicians were unable to gain comprehensive insight into the patients’ perspective and TB messaging could not be personalised to the patients need. Maintaining permanent staff at the TB focal point was described as a reason for reducing treatment interruption at their facility. “No the thing is, it is impossible, here at the clinic as we are rotating and then the patients come across a lot of faces. There are those who are dependent on that certain sister, you see…he can’t be explaining himself a lot. Is it that when the other one comes in, the patient is supposed to explain himself again and that is taking him backwards (#12).
The personal attitudes of staff, that were often perceived as harsh and condescending by the patients, may have contributed to the failure in establishing rapport with the patient. Often, the inability of the clinician to develop the patient-clinician relationship resulted in abrupt discontinuation of TB treatment without the opportunity of an intervention by the clinician.
“Unfortunately, people want to be treated by happy people, attitude. So an over worked person sometimes can you know show a bad attitude and that can, maybe he is having good intention, but the patient receives it differently and next time doesn’t want to come back to the clinic, so those are some of the things that can make patients not to come” (#19).