TB IPC measures both contribute to and reflect TB stigma
Text box 1 presents a narrative summary that introduces the symbolic position that mask-wearing has in the experience of having TB.
Text box 1: The story of Wanele the miner.
Wanele [pseudonym] is a 32-year-old male patient who was diagnosed with TB while working on the mines in the North West province. He lost his job when he started to fall ill and travelled 1000 km back to the Eastern Cape via minibus taxi to receive healthcare from this rural hospital. During the interview his body language showed he was experiencing emotional pain: he looked down, he spoke slowly and softly. He was suffering. After the interview both researchers present in the interview felt despondent - his narrative highlighted the shame he experienced associated with being ill with TB.
‘I got confused when my body lost weight. When I looked, even the trousers that I wore that used to fit me nicely, didn't fit me. I had to tighten it with a belt. I was coughing at night. I didn't know what was in me. I tried to force myself to eat. I told myself to go and test [at the clinic near the mines]. They said it would take 5 days [for the results]. When I looked, I was deteriorating, food smelled funny - especially if there was meat. My family at home said I must come back to [this] hospital because hospitals and clinics from there [at the mines] don't have care.
I travelled [from the mines] on Monday and arrived here on Tuesday around 11:00 at the nearest town. I was losing power so [on the way to the hospital] I stopped and entered the [pharmacy to get emergency treatment]. I was afraid of the injection. I didn't have power, so they helped by grabbing me, holding me down, while the health worker gave me three injections. At home we just dropped off the bags. I arrived [at the hospital] when it was late. And once I arrived, I was out of power. It was a mess. It was difficult for me to do anything. If I feel myself wanting to urinate, I feel it when the urine was already near, I couldn't hold it. I would pee on myself. They said I had TB. I was given that thing you put on here, a mask. And I was given a drip so that I could have power. I would lean on the drip stand while walking. I was treated in a nice way, I was quickly attended to. I probably got the drip 3 times at night, and then in the morning I was discharged and given pills.
I'm very afraid of TB, it's a disease that is dangerous. At first my treatment made me vomit. But I endured it until it got used to me, since I want to be healthy. I sat at home, getting up to go to the bathroom and came back and sleep again. Now, I'm getting better. I notice I don't tighten my trousers as much now with a belt. I can do things.
Last year there was a sister that used to work at the clinic who said I must go get examined for TB by giving sputum there. I thought to myself that I was afraid. I didn't go. Maybe if I had gone to that clinic to get examined, I would've seen it before this happened. I was beaten by fear. I get embarrassed even here [coming for this research interview]. I didn't want to see anything that was connected to the hospital. Because of shyness. I was afraid of people. For example, in the hospital you don't just arrive and sit alone, you arrive and find it crowded. With different eyes. That is what usually beats us, the youth.
I was afraid of people in that moment they were giving the mask to me. I thought to myself that it means my illness is wrong. [But] my illness shouldn't affect other people, I thought I should endure the mask. What was making me feel embarrassed was continually coming to the hospital. Everyone seeing me going from the hospital carrying the pills. That causes so much embarrassment for me. But then I would think that there is nothing they [the people looking strangely at me] are going to do for me, my health is here [at the hospital].’
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We start with a theoretical analysis of how Link and Phelan’s definition of stigma relates to TB IPC, also highlighting how each component links with our dataset. (25) Two stigma sub-concepts relate to the material properties of a mask and physical implications of TB IPC measures (as visible label and separation), two relate to TB IPC measures reflecting the stigma associated with having TB (loss of status and discrimination, and stereotyping of people with TB), and the final component considers the influence of power.
Link and Phelan chose to describe the first sub-concept of stigma as a label because it is something that is affixed – it leaves aside whether the label is valid, or open for interpretation. In the example of TB IPC, the mask as an object is a label – it discloses to other people that the wearer has TB, which is strongly emphasised by our participants and previous work by Abney. (8) In our study setting, the connection between receiving a mask and having TB was so firmly established, that one participant perceived it to reveal a TB diagnosis prior to a diagnostic result. This contrasted with the way health workers viewed mask use (offered at the point of triage to all coughing patients who may have TB) – prior to and not specific to a TB diagnosis. This means that masks may not be a valid label of TB disease. Wearing a mask could have developed other underlying positive meanings – for example being seen to protect others – but this was foreclosed by the negative social consequences of mask-wearing. (8)
TB IPC measures often also involve a physical separation (in a health facility using a different waiting area) and using a mask as a barrier between the infected person’s breath and shared air. Link and Phelan’s use of the term separation refers to the social labels that are used to separate ‘us from them’. (25) What is evident from the narrative in text box 1 is that the stigma associated with mask wearing and TB IPC reflects the stigma that having TB involves. In many instances this is fuelled by the fear felt by others of infection by the person wearing a mask. In our dataset participants described an expectation that people, especially with drug-resistant TB, would live separately and withdraw from social engagements:
‘I saw myself as a person who is alone. At home I live alone. I can't be happy; people get disgusted by me. Imagine when you are with people. When you enter while people are sitting, when you sit next to them - they stand up. You are left sitting alone. Even if they don't say anything, it's seeing it for yourself. One of them once said that people with [drug resistant] TB should stay at hospitals, not to be taken out and mixed with people.’ – participant 32, male MDR TB patient, previously asked to wear mask
This participant was at the end of his drug-resistant TB treatment, which had lasted several years. Prior to our interview, his treating doctor confirmed that he was not infectious anymore, yet he was still isolated at home and avoided by family and friends. This raises a question: where is the boundary between TB IPC in the interest of public health, and an example of direct discrimination against someone who is ill? From a consequentialist philosophical perspective, it would be when TB IPC stops serving a purpose, when it is futile and unnecessary. What is demonstrated in this quote is the harm caused by TB IPC when it evolves into broader social norms of engaging with MDR TB patients. TB IPC can in certain contexts be used to rationalise not only direct discrimination (through individual interactions) but also structural discrimination (which may be through social structures of institutional policies). An example of structural discrimination from my data was some of the health facilities having norms that expected MDR TB patients to wear masks irrespective of how long they have been on treatment and whether they are still infectious to other people.
Stigma associated with TB IPC measures is a result of connections between a label of someone who has infectious TB, and a context where people with TB are stereotyped. Link and Phelan described these stereotypes as ‘automatic’ and a way to facilitate ‘cognitive efficiency’. Participants described the typical person with TB to be unhygienic, living in a dirty home, and being poor. One participant, imagining what it could feel like to have TB, said she would feel that her family would blame her for getting TB ‘from outside the home’ by behaving irresponsibly - which could refer to contracting HIV which predisposes to TB. Recall Wanele’s comment in text box 1 that he felt the mask indicated that his illness was ‘wrong’. Another participant articulated this as:
‘When you look at a person [wearing a mask] you think to yourself that maybe this one has a huge illness which is bigger than mine. Even though a person doesn't eventually say anything, the eye speaks, to see how people see you.’ – participant 32, male MDR-TB patient, previously asked to wear a mask.
This description ‘the eye speaks’ shows how much of this stigma is based on the perceptions of others, and how it could be communicated through a glance in a facility’s waiting room. It is an intersection between felt and enacted stigma – the person wearing a mask may anticipate and interpret certain body language from people in the waiting room as stigmatising, but small gestures could also communicate a message that becomes enacted stigma. One participant described unobtrusively trying to cover her baby’s head with a blanket to protect them from TB when they saw someone who was wearing a mask in a waiting room. Wanele described the shame of being seen to visit the health facility or carrying tablets – which is broader than being ashamed to have TB. He felt ashamed to be an ill person, because in this context for his age group and gender it has the double stigma of being connotated to having HIV. This feeling of shame was echoed by other participants, who described how anticipating stigma may limit disclosure:
‘What kills us sick people is that a person overthinks it, they think, “O God – maybe this person is disgusted by what I am.”’– participant 18, female previous TB patient, not previously asked to wear mask.
In the narrative of Wanele, TB was associated with both the physical loss of strength (becoming weak, unable to walk, unable to control urination) but also losing social status (being valued less by society as a person). Becoming a TB patient was described by a participant as ‘becoming a different kind of person’ who is valued less by society. This echoes Goffman’s definition of a stigmatised person as someone who is reduced from a ‘whole and usual person to a tainted and discredited one’. (7) One participant described it as:
‘I was looked at in a different way. My points decreased. People became distant from me. On the phone - there is nothing intelligent we talk about. Since I'm sick, they have that mentality that there is nothing smart that I could say. I must be told what to do. I endured it, I accepted it, but at first it hurt me. I tried to train myself to be strong. To accept whatever is happening, to persevere, to know that I should take the treatment, that I should get to the hospital, and I will not pay attention to everything happening outside because it will hurt me.’ – participant 20, male TB patient, previously asked to wear mask.
Being downgraded in a social hierarchy can result in someone with TB becoming more isolated, receiving less social support, and then struggling to complete treatment which can further exacerbate stigma, bringing additional labels and stereotypes about being a ‘treatment defaulter’. One participant highlighted the negative effects of stigma on social support provision, which they believed contributed to the deaths of people with TB:
‘And those people [who keep their TB secret] they are … like a banana. And they die there because they don’t want to talk. If somebody doesn’t want to talk - that one is a banana. [But] if I’ve been infected by TB I tell you, [and] you tell someone else and they laugh, instead of supporting each other. … Graves are there because they lacked support from their families and their co-workers. If you can ask those people in that graveyard they will say, “No, I died because I had nobody to support me.”’ – participant 2, hospital nurse, previous TB.
This depicts what Link and Phelan described as ‘a cascade of negative effects on all manner of opportunities’. In our dataset, several male participants described how being diagnosed with TB meant losing their strength which led to them losing their jobs that depended on manual labour, either through being dismissed for being sick or being too weak to continue to work. This further contributes to losing social status and financial independence:
‘I usually did everything for myself. Now I couldn't. It's the energy that I don't have. I was a person that used to build houses. All the work that has to do with a house, I can do. Now I can't. I would start work and it turns out that I [must give the job to] another person. Even when I come here to take pills at the hospital, I struggle to borrow the money. They would give me a date and I would miss that date and come on another date because of not getting money. Going and borrowing money from a person irritates me. Borrowing money from a person today, then tomorrow you go and borrow money again. Every time it's your date you always borrow money, and you don't pay them back. How are you going to pay it back? If you miss a date, you miss one month of treatment.’ - participant 32, male MDR TB patient, previously asked to wear mask.
The ripple effect of TB stigma and TB disease extends widely, beyond the initial act of labelling or stereotyping. While this indicates that TB stigma is much broader than stigma due to TB IPC, in some instances TB IPC instigates this process.
Patients and health workers think differently about the implications of TB IPC associated stigma for health facilities
While in our dataset health workers and patients broadly agreed that TB IPC measures in health facilities can be stigmatising to patients, they had contrasting perspectives on the implications. In facilities where masks and respirators were commonly used, health workers perceived patients to oppose TB IPC measures, but that they ‘endured’ it as part of receiving care. It was interesting that none of the health workers we interviewed considered patients to value TB IPC for communal safety. In facilities where masks and respirators were not commonly used, health workers said making a patient feel ‘dehumanised’ through TB IPC measures contradicted the underlying values of empathy, respect and establishing a therapeutic relationship. Health workers described being concerned that TB stigma would deter patients from coming for care at the facility in the future and would also cause patients who wear masks in facilities to be stigmatised in the community. In a different clinic, a health worker wearing a respirator as personal protective equipment was seen to be stigmatising to patients:
‘The [patient] asked me, "Sister, why are you all wearing a mask and we're not wearing them? Sister, are we disgusting you?” They felt like they were dirty. So [we] stopped wearing them.’ – participant 6, Aphiwe clinic, nurse.
Yet in contrast with these health worker perceptions and despite their own strongly felt stigma, patients did not perceive stigma as a reason to discontinue mask wearing, instead focussing on the protection offered by masks and emphasising that having TB is transient. This was similar for patients who were asked to move to an isolation area – although they described it as ‘being put aside’, they mentioned trusting the health facility to make a recommendation in the communal best interest.
The overwhelming majority of patient participants described the use of masks as a way to protect other people, but also the wearer. One participant who had undergone TB diagnostic tests multiple times saw wearing a mask as a process that she could initiate when arriving at a facility and did not view it to be stigmatising. These findings contrasted with health worker views that patients did not understand why masks were being used and who simply used masks when they were told to do so. This contrast is interesting, because many of the health workers and patients form part of the same community and share a similar cultural background. This suggests that there may be additional underlying differences in the way that health workers and patients conceptualise mask-wearing. While some health workers focussed on their duty to care for an individual patient, the patient participants emphasised collectivism and the importance of communal safety. Health workers viewed TB IPC as interfering with their work, instead of being part of their work. Exploring this further may prove fruitful, as both historic and recent COVID-19 pandemic related mask-use has suggested that valuing social cohesion in an area (in contrast to individualistic social structures) can positively influence mask-use. (27–29)
On a descriptive level, these findings indicate a mismatch between what health workers perceive patients to feel, and what patients described in the interviews. Yet, as Link and Phelan suggested, to explore and understand stigma, it is also important to consider how power is exerted. (25) This could be through asymmetrical power relationship between health worker and patient (which relies on the health worker’s expertise to provide the care and services patient needs), through the power that medicine holds as institution (with medical jargon and training), or by looking at the contextual power of an organisation (in a rural area being the only facility that provides care). This may explain why patients described being unwilling to engage with health workers on TB IPC, indicating that they were willing to ‘submit’ to the treatment they receive. In research on the doctor-patient relationship Shei highlighted that relational power depends on trust – that the patient trusts that the health worker will use the power asymmetry in an ethical way and make constructive changes in the lives of their patients while treating patients as rational, intelligent, fellow human beings. (30) In an example from our data, health workers described disregarding the use of masks to show they care for patients above their own needs (which would also assert their expert judgement instead of conforming to a national directive on TB IPC implementation). Encouraging communication between health workers and patients on TB IPC preferences may be one way to manage these power dynamics and ensure both perspectives are heard.
Mitigating the stigma associated with TB IPC in health facilities
We explored additional ways in which the stigma associated with TB IPC in health facilities could be mitigated or overcome. A selection of patient and health worker recommendations from our data is provided in Table 2. We align each of the participant suggestions with the subcomponents of stigma that Link and Phelan described.
Table 2
Patient and health worker recommendations for local service redesign to implement TB IPC while mitigating TB stigma.
Recommendation
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Illustrative quote
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Stigma subcomponent that is targeted
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1. PROVIDE DETAILED TB IPC INFORMATION TO PATIENTS
Provide detailed descriptions and explanations about why TB IPC is important and how it works.
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‘The nurse should first explain because there are those who will be offended. For example, it is raining, and it is cold and then they suddenly open the windows. They should explain that "We are opening the windows so that we do not infect one another with TB. For us to be in optimal health, we must open these windows, so that the air that we breathe will not remain inside where we are, so that it will go away through the windows.”’ – participant 11, Female patient, no previous TB, not asked to wear a mask.
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This participant gave a sample script of what level of detail health workers should include when discussing TB IPC.
This recommendation focuses on the knowledge asymmetry between health workers and patients that may mitigate experiences where health workers exert their power based on expertise, without providing context and detailed explanations. It also highlights the importance of respectful interactions.
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2. RESPECTFUL COMMUNICATION
Pay attention to tone of voice, gestures and eye contact when discussing TB IPC, especially when masks may obscure parts of facial expression.
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‘I would like [my health worker] to be polite and humble, and say, “Sorry my brother, here is a mask for [you], when you are coughing you are going to infect other people. So, it's for protection.” They must speak in a human way. There are some people who are rough. When you are looking at them you wonder, [is] this person disrespecting me and undermining me, maybe I'm disgusting? You don't feel well. When they are speaking politely, and have a good expression on their face, you also feel comfortable.’ – p20, male TB patient, previously asked to wear a mask.
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This participant described what tone of voice and body language they would like health workers to use.
This recommendation focuses on health workers being aware of their relational power through acknowledging the emotive components of being ill and responding in an empathetic way.
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3. REFRAME IPC TO EMPHASISE COMMUNAL SAFETY
Describe TB IPC as a way creating a safer healthcare environment for patients and health workers.
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‘I am protecting [the health workers] and other people so that [the TB] remains with me and not go to other people. I would not get upset over something that is in my health - it will end. It will get cured and I will be that person again.’ – p8, female patient, no previous TB, not previously asked to wear a mask.
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This participant emphasised the communal benefit of mask wearing for health workers and other patients.
This recommendation tries to mitigate the separation that contributes to TB IPC stigma by blurring the groups of ‘us’ (the people who are sick with TB) and ‘them’ (the people who need to be protected against TB) by emphasising transitions between being ill and well. It also introduces interdependence between these groups: how communal safety depends on people with infectious TB to wear masks, which in turn places a responsibility on people who are being protected to avoid behaviour that may be stigmatising.
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4. PROMOTE UNIVERSAL AIRBORNE TB IPC PRECAUTIONS
Consider universal airborne precautions such as improved ventilation in all clinical areas, routine use of outdoor waiting rooms and mask-use by everyone in the health facility instead of precautions targeted at infectious patients.
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‘I think when we are standing in the queue, we should try to protect everyone - including the nurses and doctors - everyone should wear a mask. We should all protect each other inside the premises, so that their sickness doesn't get to me and mine doesn't get to them. We don't know who between us is sick.’ - p9, Male patient, no previous TB, previously asked to wear a mask.
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This participant suggested broadening the group of people who are asked to wear a mask.
This recommendation focuses on changing the label of infectiousness that characterised previous use of masks for TB IPC, by adding the use of masks as protection. This approach could create a different symbolic meaning of airborne IPC measures that has a broader application than for TB. It could also mitigate the experience of feeling discriminated against, because instead of targeted measures, universal measures are used.
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5. DESTIGMATISE TB AS ILLNESS THROUGH VOLUNTARY DISCLOSURE
Create an environment where people with TB are supported to disclosure their illness. When TB is less stigmatised, TB IPC measures would carry less stigma.
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‘TB doesn’t only attack the poor [people]. [When I tell this to patients] they say, "No, sister. No." I say, "Yes, I'm the one who has [had] TB before, but now my TB is cured. I took treatment regularly and I'm well." That's why I counsel them because I just took that sickness from her to me. Patients must know that this is everyone's disease.’ – p13, Hospital, nurse, previous TB
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This health worker disclosed that she had TB to patients to challenge the stereotype that only poor people are affected by TB.
This recommendation uses the position of power relating to the status that a health worker has in this context, based on their employment and education, to reframe conceptions of who gets TB.
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An underlying principle of the five recommendations presented in Table 2, is that destigmatising TB IPC does not involve omitting the preventative measures, but rather paying closer attention to the way TB IPC measures are being communicated and used. Several participants conceptualised this by asking to be spoken to ‘in a human way’. This contrasts with earlier descriptions of having TB, experiencing stigma and feeling like they were less than human.
‘What I would advise [health workers] is that you must be polite to people, because a person is a person through other people [a Nguni proverb, often used to describe the meaning of ‘ubuntu’]. So, maybe they are a nurse, but they work with people, if the people aren't there, there is nothing they will work with, so they must treat them well.’ – participant 20, male TB patient, previously asked to wear a mask
This participant suggests looking at ‘ubuntu’ as a way to understand how TB IPC measures should be adapted to emphasise interconnectedness and a shared sense of humanity. ‘Ubuntu’ could refer to a moral quality in a person, but also an intellectual tradition that falls within African humanism. (31, 32) It has a rich history in South Africa, being referred to in the epilogue of the 1993 South African interim constitution as guiding principle for the country’s healing from its Apartheid history. (31) One commissioner from South Africa’s Truth and Reconciliation Commission defined ‘ubuntu’ as:
‘You are what you are because of other people. We don’t live in isolation; we live in a community. That sense of community is what makes you who you are, and if that community becomes broken, then you yourselves also become broken. And the restoration of that community, the healing of that community, cannot happen unless you contribute to the healing of it in a broader sense. Basically, that is it. Ubuntu is that I am because of others, in relationships with others. I am not an island of myself, I am part of the community, I am part of the greater group.’ (31)
‘Ubuntu’ has also gained prominence in the academic literature, as a way to foreground African constructions of the world and has been used as a conceptual framework to inform diverse fields such as social work practice and African philosophy. (33, 34) It emphasises interconnectedness, caring and communal wellbeing, which contrasts with the separation, discrimination and disempowerment that Link and Phelan described as subcomponents of stigma. We use ‘ubuntu’ as a framework to present four practical suggestions on how TB IPC implementation strategies could acknowledge someone’s humanity.
(4) Providing support to TB patients
The final recommendation to use ‘ubuntu’ to guide TB IPC implementation relates to creating a supportive environment, not only on an interpersonal level between health worker and patient but using the community as point of focus. Van Breda explains how this could be conceptualised:
‘The notion of ‘community’ is not an impersonal structure or system, but a living collective or network of people, whose wellbeing and functioning are inextricably intertwined.’ (34)
One recommendation for destigmatising TB as a disease that was discussed in depth by the participants was creating a supportive environment where people would be willing to disclose they have TB. This shifts the focus of destigmatising TB IPC measures from the practical measures and their symbolic meaning to looking towards creating a community context where TB as a disease is no longer stigmatised. As a consequence, TB IPC measures that are associated with TB would also no longer be stigmatised.
Several participants pointed out that asking people with TB to disclose their illness could be uncomfortable, and could lead to isolation or psychological harm – on a community level it would contribute towards decreasing the stigma for other people affected by TB. This compromise reflects a community-orientated focus, instead of an individual focus.
‘I’ve thought about it in terms of normalising. I sometimes feel very uncomfortable [disclosing sensitive information about myself and risk stigma], but I do it anyway. Because I think that’s what has to be done. So that’s why I say with TB [if I developed it], I would be open about it. With HIV I hope I would, for that exact same reason.’ – participant 29, hospital doctor.
There is an implied responsibility for the ‘receiver’ to respond tactfully and supportively, to meet the vulnerability of the person disclosing their illness. The benefit may not necessarily be directly for the individual disclosing their illness, but for people from the same community facing a similar dilemma. What is relevant to an infectious disease like TB, is that disclosure may also make colleagues or family members aware of the potential risk of developing TB after exposure. There is also a shared risk on a community level in a high-TB burden context that makes the ‘us and them’ separation between people who have and do not have TB seem futile. ‘Ubuntu’ brings an interconnected, community-focused perspective that could contribute to addressing some of the underlying causes of TB stigma.