An initial participant pool of 62 was developed. Ten TB survivors participated in in-person interviews and one TB survivor participated in a telephone interview. Recent research has confirmed that eleven participants are considered adequate for reaching saturation . Reasons for non-participation included that the potential participant was deceased, unable to or not interested in participating, or inaccessible. Five participants were South African citizens; the other six participants were residents of South Africa who had immigrated from other sub-Saharan countries. Eight participants identified as male. Ages ranged from 24 to 74, and occupations included part-time and full-time employment as a computer programmer, hair stylist, mechanic, construction worker, or upholsterer. Most participants experienced some disruption in employment due to the COVID-19 pandemic and government lockdown, meaning that they were unemployed for at least part of the pandemic. Pathways representing experiences of stress and coping in TB survivors during COVID can be found in Fig. 1. After the vignettes, common themes described by study participants are further outlined.
Table of Contents
Portia is originally from another sub-Saharan African country and moved to Johannesburg approximately twenty years ago for work. She is HIV-positive and in 2017 began feeling sick, became increasingly weak, and lost weight. She was quickly diagnosed with TB and began treatment. Because of her symptoms, she was unable to work but had friends nearby who supported her financially by providing groceries, physically by collecting her medication for her, and emotionally by phoning her to check in and visiting to chat through the window. Portia was also grateful to the healthcare workers, whom she experienced as patient, kind, and informative, and who ensured that she was able to attend medical appointments and access medication. She feared stigma related to TB and so limited the number of people who knew about her condition to those she felt she could trust.
Once her health improved Portia was able to find employment again, but her work became unsteady once more with the advent of the COVID-19 pandemic. Her past TB continued to limit her physical functioning, sometimes accompanied by shortness of breath and difficulty breathing, weakness, and fatigue, which caused a decline in her health and placed her at increased risk for recurrent TB. Additionally, because she was not a South African citizen she was unable to receive government financial assistance and so tried to adapt by selling her household items on the street, a task further complicated by police officers who were enforcing the government’s strict lockdown by chasing people off the streets. Portia was able to continue attending doctor’s visits and collecting her medication because some of the staff at the primary health clinic, with whom she had become friendly, offered her financial assistance. As she was living alone, the lockdown left Portia isolated, which came with mixed feelings. On the one hand, she was afraid for herself because of her HIV status and heightened risk as a TB survivor, so she felt the isolation could protect her from contracting COVID. But the lockdown also brought loneliness and the closed borders separated her from her family. Financial insecurity further isolated her from her family, as she struggled to pay for the data to be able to even phone home. She tried to keep herself busy at home by finding distractions through reading, exercising, and hobbies, which minimized her frustration.
Despite her caution, Portia contracted COVID and further isolated herself so that she could protect others. She had also heard of people with COVID being stigmatized and wished to protect herself from the judgment of others, and so quarantined alone. She began to talk to herself, leading to overthinking and worry and became anxious around people. Despite her fears, she was deeply grateful for her supportive church group and neighbors, who would bring her food and medicine, and check on her by talking through the windows of her flat. The long quarantine and illness left Portia feeling anxious and depressed, which she attempted to alleviate through prayer and hope that the pandemic would one day pass….
Thabo was born and raised in Johannesburg and has a wife and child. In 2019 he developed a persistent cough and felt feverish. He visited his clinic multiple times and was repeatedly misdiagnosed. His symptoms increased, and he began losing weight. Months later he switched health facilities and was finally correctly diagnosed with TB, but by that time most of his lungs had been affected. He was disappointed with the healthcare he received even after his diagnosis and felt that the doctors and nurses were not communicating with him adequately about his condition and treatment, and how to protect his family. He compared this with his HIV care. Having tested positive for HIV years prior, he had regular clinic check-ups in which healthcare workers would tell him about his condition, but at which he also met many other people living with HIV and was able to receive support and advice from them. Because the COVID-19 pandemic and lockdown began soon after his TB diagnosis, he was unable to interact with TB survivors in the same way. The government lockdown made it difficult to attend his medical appointments. Even when he did come for check-ups, social distancing prevented him from conversing with other patients as he had before. Additionally, he was afraid that going to the primary health clinic would increase his susceptibility to COVID-infection, because of the number of patients also attending appointments and the transmissibility of the disease. His fear caused him to delay getting prescriptions refilled and going to clinical check-ups. Despite this, his condition continued to improve slowly, though he still struggled with weakness and shortness of breath and suffered side effects from his medication. He was frustrated at his inability to be as active as he once had been. Lack of money was another reason for non-adherence, as he was not working and therefore was unable to pay for transportation to his primary health clinic. His family struggled to afford food and he was stressed that even his young child recognized the difference in their lifestyle. Despite increasingly limited formal work, Thabo was eventually able to pick up informal work intermittently, which helped to subsidize the government financial support that he felt was inadequate. The work also provided the additional benefit of being a distraction during the pandemic. He would work in his backyard when concern for his family’s well-being became so great that he feared arguing with his wife. He was also able to remain in contact with his parents and siblings, though he struggled at times to pay for mobile data. His family and friendly neighbors provided each other with social support. At times they would congregate informally in a small common yard while maintaining social distancing. They also helped one another with groceries, as they all struggled with finances at different points during the lockdown. Thabo would even occasionally collect medication for neighbors who were unable to attend the clinic to fill their prescriptions. Before the COVID pandemic and lockdown, Thabo had found it personally rewarding to advise friends, colleagues, and other people he met who displayed symptoms he recognized as potentially related to TB or HIV, by telling them that they did not need to be afraid and by encouraging them to get tested. Because he had appreciated those patients who had advised him on living with HIV when he was diagnosed, he wanted to extend that to other people he met in his life. He also had never felt stigmatized when disclosing his HIV and TB status, which gave him the confidence to be open and unafraid when discussing his illnesses with others. The government lockdown hindered his ability to provide this support, and so limited this important coping strategy, though as the lockdown has eased over time he has once again been able to provide support to others.
The patient journey
Portia and Thabo’s stories reflect the different pathways to healthcare that this study’s participants experienced on their journeys from illness to diagnosis to treatment. Additionally, their individual tales portray common experiences during the COVID-19 pandemic, as participants navigated this infectious respiratory disease and consequent government lockdown. Exploration of participant experiences is detailed chronologically below, from the initiation of TB symptoms, diagnosis, and treatment through to the COVID-19 pandemic as a TB survivor. In particular, participant stress and coping strategies during these periods are highlighted.
Initiation of TB symptoms and TB diagnosis
"Somedays I will wake up with sore legs and I can’t walk. Somedays my hands I was feel like I was lifting a heavy stuff, like I have pains like in my toes, in my waistline…."
Upon initiation of symptoms, both Portia and Thabo sought help at their local health facilities. Despite displaying symptoms common to TB, and despite the prevalence of TB in South Africa, Portia and Thabo had vastly different experiences in accessing healthcare for their illness. Portia was quickly diagnosed and immediately begin treatment, similar to the experiences of some study participants: “At the clinic, they took sputum. When I was thinking of going back to collect my results, then COVID attacked me and then the results came positive for TB, [healthcare workers phoned, saying] ‘We will come to collect you,’ then they come,” (Female, 65).
Thabo was initially misdiagnosed and therefore his care was delayed for months. Multiple participants had a similar experience: “They took sputum. They told me to come after three days, after three days they told me they can’t find results. They take it again. For almost three weeks,” (Male, 36). Thabo’s misdiagnosis also meant that for months he was interacting with, and possibly transmitting and infecting other people. As his condition did not improve, he eventually sought healthcare elsewhere and was finally correctly diagnosed, by which time his condition had significantly worsened. Even then, Thabo was dissatisfied with the care and communication from the doctors and nurses and concerned for the wellbeing of his family. As expressed by one participant: “You come here, you get your checks, they do the sputum, they do everything that is needed, send you to x-rays, and you don’t get any feedback,” (Male, 74). Participants in fact described differing qualities of healthcare, with about a third of participants expressing that their healthcare workers did not provide them with adequate information regarding their diagnosis or progress, counsel them sufficiently on how to prevent transmission to loved ones, or follow-up to check their condition and offer support. This lack of communication was frustrating, a feeling compounded by the infrastructure of the health system; in Thabo’s case, he would at times attend the clinic and wait all day without seeing a medical practitioner and then be asked to return the next day.
This contrasts with Portia’s experience, who felt that the healthcare providers were very sensitive, supportive, and informative throughout her treatment, as exemplified by one participant: “After 21 days I had power and realized that doctors know their job,” (Male, 63). In fact, even participants who were displeased with healthcare services expressed positive feelings towards particular nurses and doctors who were supportive: “Well, you know in the beginning, uh, there was a really nice sister. She was, uh, really very, very awesome. Uh, she cared. You could see,” (Male, 74). In this way, participants differentiated between an individual healthcare provider and the healthcare system itself.
For both Portia and Thabo, their diagnosis was life-changing. They experienced long-term physical impacts, similar to other participants: “Because of the limitations that I have in doing most activities, that health. I sometimes have, like, your mental breakdowns, your emotional breakdowns,” (Male, 24). The stress of unemployment and consequent economic strain was also common: “When I had TB I really, it was hard because I couldn’t go to work,” (Male, 29). A TB diagnosis also resulted in social consequences. For Thabo, he was concerned for the well-being of the loved ones with whom he was living and felt that the healthcare providers were more concerned with data collection and research than helping him devise ways to protect his wife and child. Despite this stress, participants found some support from family members who were helping to care for them during their illness: “Yeah, like it would, better, like it would better things. It would. Because of, I would not feel alone, I wasn’t feeling alone with them around. Like I felt like, okay, like I had someone to hold, hold my hand throughout this whole healing journey or recovering journey, so. It felt great,” (Male, 24).
Portia found strength in the medical, material, and emotional support offered by the primary health care nurses who were caring for her, who gave her medication, counseling, and financial support for transportation. Outside of the health facility, though, she was wary of judgment and so practiced self-care in choosing only to disclose her status to trusted loved ones. In this way, she managed to avoid judgment but also further isolated herself socially, as exemplified by one participant: “Because of, uh, if I had, like, just to, to remain around, like people and be indulging their stigmas, that would break me. So, I had to isolate myself. I had to keep a positive mind. I had to take my treatment and take good care of myself. That helped me to get through TB,” (Male, 24).
COVID-19 pandemic and delayed care
"Life became so hard. Very hard. If I was someone who is like, weak, I could have killed myself."
As their health improved, Portia and Thabo were able to return to work. Subsequently, with the onset of the COVID-19 pandemic, the South African government declared a strict lockdown which restricted their movement and resulted in both once again becoming unemployed. Thabo was able to receive government financial assistance and found some informal work, but, because she was not a citizen, Portia could not receive government assistance. She did try to sell her household items on the street but was threatened with arrest by the police, for breaching the lockdown. Many participants received food parcels and financial support from other sources, including family and friends, local organizations, churches, and businesses: “And I think our church also registered us by Checkers (a national grocery store) because there was a 400 Rand voucher that I got on my phone,” (Male, 52). Social workers also played a role in providing material support: “But we were lucky because social workers were giving away food parcels and it made a difference,” (Female, 65).
The pandemic also strained healthcare resources, causing further delays in scheduling appointments and preventing access to medication. At times participants struggled to access transportation to collect medication or were ill and asked friends, family, or neighbors to collect their medications. Even when transportation was available, healthcare facilities were overwhelmed with the pandemic and so wait times to receive care were extended. Additionally, some participants were afraid to go to healthcare facilities, where they felt their risk of contracting COVID-19 was higher.
Stress and anxiety
"Almost everyday wake up in the morning, try to think what if the person I’m living with passes or what if I pass because my body is not that much strong too, because [of] other sickness?"
Social isolation recurred for Portia and Thabo during the pandemic, as the government lockdown restricted movement. This was particularly painful for Portia, who was living alone and unable to visit her family because of the closed borders. She did interact minimally with neighbors, but also when she was diagnosed with COVID she chose to self-isolate out of fear of stigma, which resulted in poor mental health, with symptoms including depression and rumination. As one participant stated: “Because when you have, like COVID, you isolate yourself, no one can see you, that’s a time you feel very lonely. Very, very, very lonely. It seems like you can just go out and scream, ‘Yes, I’m positive. Someone come and visit me please,’” (Male, 52).
Unemployment or underemployment also caused stress, through financial insecurity. One participant explained that his status as a TB survivor was stigmatized, making him more vulnerable at work: “I was in fear of losing my employment. Because of my employers were aware that, um, I had TB, and that I am vulnerable to getting COVID. So, they made us sign some sort of form or document that, okay, please sign this as an acknowledgment form that, um, you know, that your health issues and that you might contract COVID. Because of, at the end of the day I had to ensure that, um I provide for my family. I have to buy groceries, buy clothes and all that,” (Male, 24). Most participants lost employment, at least temporarily, during their recovery from TB, COVID-19, or both, and were therefore isolated at home and tended to ruminate, which increased stress and worsened mental health: “Sickness, being sick whilst you are home doing nothing and having no support was really stressing me,” (Male, 63).
Portia and Thabo were afraid that, because of their pre-existing conditions of TB and HIV, they were more susceptible to COVID-19. Both were aware that, like TB, COVID-19 affected the lungs. Thabo did not want to go to the hospital and at times would miss appointments, resulting in delayed care and lapses in medication. This was a common fear amongst participants, which prompted many of them to restrict their movements during the pandemic, including limiting health-seeking behaviors: “What must we do? Go to the hospital?” This is a place I avoided [laughs] because it was like, you come to…whatever hospital, the virus like, live in hospitals…” (Male, 52).
Participants also feared for the well-being of their loved ones. When sick, they tried to protect others from illness: “We need to do is to stay away from other people just to protect them because being outside with COVID, you’re infecting others,” (Male, 34). They also tried to respect the emotional boundaries of their loved ones, recognizing that the pandemic was challenging for everyone: “Especially with COVID, we all had problems. No one was, was out of the, the water. Everyone, every one of us was in the water, drowning. So, uh, I was thinking to myself, ‘Let me try and make a plan for myself instead of bothering whoever I need to bother,‘” (Male, 52). This fear was compounded when ruminating on the effect their death might have on loved ones: “I’ve still got a child to raise, because she’s still now at school. I don’t wanna die now,” (Male, 52).
"You must take out the pain by laughing."
Despite the stress, both Portia and Thabo were able to find material support (including financial support and groceries as discussed above) and emotional support from family and friends. Non-judgmental relationships made participants feel less isolated, afraid, depressed, and anxious: “The way that they were talking to me, the way they were treating me, it was giving me that thing, okay, this is my people, this is my family,” (Male, 34). These social connections established trust, allowed the participants to feel loved and valued and helped them to believe that they could survive illness and the pandemic.
Portia also received support from healthcare workers, who provided non-judgmental encouragement and counseling: “Like, they were treating me like a brother to a sister or like brother to brother. Just like that…it makes me feel like, okay this is nothing. I’ll be healed and I’ll be sharp. I’ll be just like anyone else outside who’s not sick, who’s not having HIV, who’s not having TB,” (Male, 33). Multiple participants noted that healthcare workers would call them to check in and encourage participants to adhere to medication and appointment schedules. Healthcare workers also provided information on participants’ diagnoses, treatment, and lifestyle changes to help them manage their illness: “No, like, when you get, when I get information like, ‘Go eat like this,’ someone telling me, ‘Go do this, go and exercise,’ if I take that information into my mind, then practice it, then, I think, everything goes well. You gain,” (Female, 38).
Participants noted that distractions were useful in alleviating stress, by keeping them busy. Work, in particular, was useful, as one participant explained: “I can work ‘til I don’t know what time is it. ‘Cause, like, I’m worried, so just to keep myself busy, just work, work, work, work until I don’t know,” (Male, 29). Though the pandemic increased unemployment which complicated participants’ ability to work formally, participants sought out informal or part-time employment or engaged in hobbies, to keep themselves occupied. One participant began welding in his backyard, which provided a creative outlet that alleviated his frustration, which he also recognized improved his relationship with his wife and child. Another participant established a hair-styling business in her home. These ventures, therefore, offered both emotional and financial support. Some participants also used exercise, reading, listening to music or podcasts, and going on long drives as distractions, “Just to get my head again,” (Male, 36).
Both Thabo and Portia were able to accept the reality of the COVID-19 pandemic and find optimism about the future as the pandemic subsided. In fact, positivity helped participants to both recover from illness and survive the pandemic and lockdown: “In my mind, I had hope that there are chances that I will also survive,” (Male, 63). Spirituality also provided inner strength and physical support for Portia, who found comfort in prayer and received groceries from her church group. As one participant noted: “It’s not everybody’s belief, but to the man upstairs I’m grateful. And I’ve got a lot of gratitude every morning when I wake up – I’m still alive,” (Male, 74).
Only a small minority of participants reported negative coping strategies associated with their TB or COVID-19 experiences. One participant commented that his alcohol consumption increased when he was socializing during the pandemic.