Quality of life among people with tuberculosis in the Eastern Cape, South Africa: a qualitative study

Abstract

Background

Quality of life (QoL) for people affected by tuberculosis (TB) is generally poor. However, little is known about when and why it changes during treatment. Such knowledge is key to the development and implementation of meaningful interventions. We sought to explore perceptions of QoL amongst people with pulmonary TB during and after treatment.

Methods

This study was embedded within a larger study exploring multilevel determinants on TB cascade-of-care outcomes in Eastern Cape, South Africa. Between November 2023 and April 2024, 33 adults were purposively sampled for individual semi-structured interviews early, mid, and at the conclusion of treatment. Questions explored perspectives on current QoL and changes in specific domains (e.g., role functioning, mental wellbeing) during illness and treatment. Inductive and deductive techniques were combined in thematic analysis which incorporated QoL and chronic illness frameworks.

Results

Participants described a common trajectory in QoL changes; however, overall assessments of QoL were highly personal. Shared trajectory was characterized by four phases: ‘progressive disability to diagnosis’, ‘treatment challenges and QoL bottom’, ‘inflection and hope’, and ‘stability and incomplete resolution’. TB symptoms limited functional mobility, causing a financial crisis for many. Intense need for caregiving, emotional, and financial support persisted for weeks and months until physical gains eased problems in other domains. However, many who had completed treatment described continued weakness and inability to work. Participants provided highly varied assessments of current QoL rooted in personal priorities and individual circumstances. While few clear trends were noted, those with recurrent TB (48%, n = 16) were more often dissatisfied with their wellbeing. By the end of treatment, participants were no more likely to evaluate QoL positively compared to those earlier in treatment.

Conclusions

Adaptable interventions that can be tailored to individual needs are required to help those with TB feel good about their life position. Intervention components should be delivered in the setting of long-term relationships with providers and prioritize financial wellbeing and counselling. High levels of support are needed during early treatment but supports must remain accessible through treatment completion and beyond.

Supplementary Information

The online version contains supplementary material available at 10.1186/s44263-026-00258-x.

Background

Devastatingly low quality of life (QoL) experienced by many of the 10.7 million people affected by tuberculosis (TB) each year is a significant global health concern which will affect our ability to meet the United Nations’ Sustainable Development Goals [1–3]. X-rays, acid-fast smears, and weigh scales, often used to measure the clinical course of TB, cannot gauge the parallel social and emotional toll wrought by this highly stigmatized disease. QoL is critical to understanding TB, as it is a single concept capable of capturing the physical, mental, social, and financial devastation wrought by the disease.

Although philosophers and sociologists have conceptualized QoL variously as capability, wellbeing, and role fulfillment, the World Health Organization (WHO) definition, developed for the WHOQOL measurement tool, is widely accepted [4, 5]. In this framing, QoL is defined as an individual’s perception of their current life position “in relation to their (own) goals, expectations, standards and concerns” [6]. Research from diverse settings including Pakistan, Ethiopia, and China has shown that people with TB have markedly reduced QoL scores compared to the general population [7–9]. Such poor QoL occurs because people affected by TB are more likely to be experiencing poverty and social marginalization, with HIV compounding the disadvantage for many [10]. While each of these factors is implicated in standalone impairment, TB also exponentially erodes access to the financial resources, social support, and emotional resilience needed to feel well. QoL typically improves after the first months of TB treatment as symptoms abate and treatment intensity reduces; however, it often remains impaired past the end of treatment [1, 11, 12]. The post-TB QoL gap is attributed to residual lung disease, inability to return to work, and lasting social stigma [13–16]. Disadvantage is compounded for the not insignificant proportion of survivors who experience recurrent disease [17]. This has led some scholars to assert that TB may be better understood, and addressed, as a chronic illness (e.g., [18]).

South Africa has long had one of the highest TB burdens in the world, driven by high rates of HIV and socioeconomic disparity. Studies of TB-QoL in South Africa hold up international trends of considerable impairment across domains with improvement during treatment [19–23]. We are aware of only one other South African study directed at exploring the experience of QoL during treatment [24].

South Africa’s Eastern Cape province is disproportionately affected by TB, with higher prevalence compared to other provinces [25–27]. Wellbeing is also challenged in the Eastern Cape, with a score on the Human Development Index of 0.68, lower than all other South African provinces (average 0.72) and lower than the international average of 0.73 [28]. Unemployment in the Eastern Cape hovered around 40% in 2023 and amongst those who were employed, approximately a quarter worked in the informal sector where sick leave and job protection are not available [29, 30]. Today’s socioeconomic conditions in the Eastern Cape are the legacy of particular apartheid policies and practices enacted in the province which included a strictly enforced homeland system and the development of townships close to factories and other businesses [31, 32]. Minimal health and social services were provided in these townships, designed to capitalize on the poorly paid labour of Black South Africans.

Given such high levels of poverty, the social welfare system administered by the South African Social Security Agency is highly relevant to QoL in the Eastern Cape [33]. In addition to grants for parents and seniors, people experiencing TB may apply for a longer-term Disability Grant and/or a short-term Social Relief of Distress Grant. Researchers have reported that the application process for these grants can be “arduous”, with a low rate of success for people with TB [34, 35]. Easier for people with TB to obtain, but not consistently available, are food parcels supplied by various non-governmental organizations to select TB clinics which are inconsistently available [36, 37].

Recognition of the importance of QoL for people affected by TB is growing, with most studies adopting quantitative designs, capturing a snapshot of individual QoL through measurement with standardized scales such as the WHOQOL-100 or the EQ-5D [1, 38, 39]. However, the complexity of patient perspectives on key dimensions of QoL, such as but not limited to physical, social, financial, and mental, are rarely explored. This leaves important questions about QoL variability, subjectivity, and cultural differences largely unanswered. To address this gap and identify relevant points for intervention along the TB treatment journey, we undertook a qualitative exploratory study among people with TB in Eastern Cape province, South Africa.

An isiXhosa translation of the abstract is provided in Additional file 1.

Methods

Study design and research team

This research was conducted as part of the Missed TB Outcomes study [40, 41], a prospective observational study exploring the impact of multilevel social determinants on QoL and other TB care cascade outcomes. Data collection for Missed Outcomes occurred between January 2022 and April 2025 and included investigation of community stigma and contact investigation outcomes. The study team was comprised of investigators from the parent study, all of whom were experienced in the research setting. All team members were experienced conducting research in sub-Saharan Africa, including the first author who is a postdoctoral scholar. Research coordinators and all interviewers (i.e., four Bachelor of Social Work–prepared interns; three women and one man) were bilingual in isiXhosa and English, the dominant languages of the region, and trained in qualitative methods.

Conceptual framework

The conceptual framework for our qualitative study was rooted in two elements. First, the QoL conceptual domains reflected in the WHOQOL-BREF Questionnaire, including physical, psychological, social, and environmental (social and physical) [6]. Second, Bury’s theory of biographical disruption, used to understand how people work to repair their identities, relationships, and social status when disrupted by the waxing and waning symptoms of chronic illness [42, 43]. Building upon Bury’s foundational work in 1982, we also included the work of Charmaz who emphasized how stigma can impact people’s access to the intellectual, financial, emotional, and social resources needed for biographical reparation [44]. Key stages in the non-linear biographical disruption and repair narrative include advancing disability, seeking diagnosis, diagnosis disclosure, and “living in an unruly body” [42, 44]. Each stage brings vulnerability and uncertainty, posing opportunities for support and relief alongside new risks for discrimination and exclusion. We selected the WHOQOL-BREF domains as they remain at the core of TB-QoL measurements, and biographical disruption (further borrowing on Charmaz’s work in stigma) because it facilitated our objective to explore QoL across a broader range of domains and changes over time.

Participants

Adults being treated for pulmonary TB were recruited to the parent study from 18 primary healthcare clinics where TB treatment was administered across the Buffalo City Metropolitan Health District, Eastern Cape province. Clinics were selected to balance representation from rural, urban, and peri-urban communities. Between November 2023 and April 2024 (study months 22–28) participants who were within 15–240 days of starting TB treatment and had completed the 26-item WHOQOL-BREF measure at baseline were invited to an in-depth QoL interview. Purposive sampling was used in an attempt to balance the sample with respect to stage of treatment (early, mid, completed), gender, and measured QoL (high vs low). Early treatment was defined as 15 to 45 days post-treatment initiation, mid as 80 to 120 days post-initiation (and in continuation phase), and completed as 180 to 240 days post-initiation (and completed treatment). Gap periods were instituted to enable us to highlight and compare experiences during distinct phases of treatment; thus, participants who were 46–79 and 121–179 days post-treatment initiation were not approached to participate. To facilitate sampling of participants with diverse QoL experiences, we relied on participants’ cumulative scores to the first two questions on their baseline WHOQOL-BREF questionnaire. These questions are designed to assess individuals’ overall quality of life and wellbeing: “How would you rate your quality of life?” and “How satisfied are you with your health?” [6]. We categorized individuals with a combined score between 7 and 10 to be experiencing high QoL, and individuals scoring between 2 and 5 to be experiencing low QoL. N.B. and L.M. met biweekly to review data collected and plan future recruitment. Prior to the cessation of data collection, a full team meeting was held to review preliminary findings and determine if data were adequate to support trustworthy findings [45].

Data collection

Research assistants phoned eligible individuals to explain the purpose and process of the in-depth interview, providing individuals an opportunity to ask questions and decline participation. Interviews were then arranged at willing participants’ preferred, private location (i.e., home or health centre). Interviews were conducted in English or isiXhosa, according to the preference of the participant, following verbal review of the initial Missed TB Outcomes consent and agreement to proceed with the interview and audio recording. A semi-structured interview guide (Additional file 2) was developed to capture elements of the conceptual framework and adapted to the local context. Topics included life before TB; treatment experiences; and changes in daily routine, social relationships, and economic circumstances during illness and recovery. Prefaced by an introduction to the multifaceted and subjective nature of the concept, participants were also asked to describe their current QoL (isiXhosa: Umgangatho wobomi) in their own words. Cue cards depicting various QoL domains were used to elicit deeper dialogue (Additional file 2). Cue cards were developed by the research team for the purpose of the study during a preparatory workshop and were not validated. Research assistants were encouraged to add probing questions and adapt the interview guide as needed to engage the participant and discuss topics of relevance. Participants were offered a small snack at the start of the interview, given a grocery store voucher worth 100ZAR (approx. 6 USD) at the end of the interview and were not contacted again after the initial interview.

Research assistants took notes during and immediately after each interview, which included participants’ non-verbal communication, a description of the interview setting, and the language of the interview. Interviews were transcribed verbatim by the research assistant who conducted the interview. Interviews conducted in isiXhosa were translated for equivalent meaning and transcribed in English in a single step. To ensure data accuracy, each transcript was reviewed by an alternate research assistant and 30% of transcripts were audited by the study coordinator (L.M).

Analysis

N.B. coded initial transcripts inductively in Nvivo (Lumivero, v.14) [46] and developed a coding framework based on initial codes, the conceptual framework, and discussion during team meetings [47]. Codes reflecting the stage of the illness narrative were informed by biographical disruption theory, and codes informed by the dimensions of QoL described in the WHOQOL document [6, 42, 44]. N.B., L.M., and M.G. then worked as a group, using Taguette qualitative software (Open Source Collective, v. 1.4.1 computer-based version) [48] to deductively apply the coding framework to all transcripts. Each data segment was assigned two or more codes. One code was used to indicate the stage of the illness narrative and at least one code was used to indicate the QoL dimension referenced. New codes were added and existing codes refined iteratively as needed (Additional file 3).

During the first half of the group analysis, each transcript was coded in duplicate and reviewed in pairs to reconcile differences. Once consistency was achieved, the remaining transcripts were coded independently with frequent consultations to support analytic reliability. N.B. and M.G. also prepared case summaries wherein each participant’s circumstances were described and the rationale for their QoL assessment documented. Rooted in ongoing discussions within the qualitative research team, final themes were developed by N.B. who worked in collaboration with A.D. to progressively collapse and connect individual codes [49]. L.M. and K.F. provided guidance on cultural and linguistic interpretation.

Manuscript preparation was guided by the COREQ checklist (Consolidated criteria for Reporting Qualitative research) which is contained in Additional file 4. [50]

Results

We approached 40 eligible participants, of which 33 agreed to be interviewed. Those who declined cited inconvenience. Interviews ranged in length from 12 to 65 min (median 47 min). The sample was balanced between genders and treatment phases. Most participants were unemployed and many were living with HIV and/or experiencing recurrent TB (see Table 1 for participant demographics). Participants reported living in households with little to no financial capacity, where all sources of income and physical labour were crucial to sheltering, feeding, and caring for household members.

Table 1.

Participant characteristics

Category	Proportion (n)
Gender	Men—52% (17) Women—48% (16)
Language preference	isiXhosa—85% (28) isiXHosa/English—12% (4) English—3% (1)
Phase1	Early—33% (11) Mid—30% (10) Completed—36% (12)
Quality of Life at baseline (proxy survey score)2	High—64% (21) Low—36% (12)
Employment (self-identification)	Employed—24% (8) Unemployed—76% (25)
Previously experienced TB	Yes—48% (16) No—52% (17)
Living with HIV	Yes—55% (18) No—45% (15)
Age (average 40.8)	18–35—39% (13) 36–50—39% (13) > 51–22% (7)

¹Early—15–45 days post-initiation; Mid—80–120 days post-TB treatment initiation and in continuation phase of treatment; End—180–240 days post-TB treatment initiation and completed treatment

²High—combined score on first 2 WHOQOL-BREF questions between 7 and 10. Low—combined score between 2 and 5

Results are presented in two themes, ‘Shared Trajectory’ and ‘Personalized Rationale’. In Shared Trajectory (Theme 1), we describe four distinct phases generated from participants’ narratives. In Personalized Rationale (Theme 2), we present participants’ overall QoL assessments, based on unique perspectives. Quotations are labelled with participants’ study identification number, gender, phase of treatment, and recurrent TB status.

Theme 1: shared trajectory

Four phases of a shared QoL trajectory were identified: ‘Progressive disability to diagnosis’ → ‘Treatment challenges and QoL bottom’ → ‘Inflection and hope’ → ‘Stability with incomplete resolution.’ However, the degree of QoL descent and recovery, as well as time spent in each phase, was highly variable, influenced by factors such as symptom severity and amount and quality of family social support. Two participants who reported mild symptoms were able to maintain employment and had strong emotional support, had experiences outside the norm (Fig. 1 depicts the QoL phases; Table 2 contains exemplar quotations).

Fig. 1.

Trajectory of quality of life (QoL) changes during tuberculosis treatment

Table 2.

Quality of Life phases with illustrative quotes

QoL phase	Participant quote	Participant description
Progressive disability to diagnosis	One of the (biggest) challenges was being weak and unable to go around and see people. I was also sweating at night with my body full in pains	862, man, mid treatment, first TB episode
	I won’t lie saying that I accepted (the news that I had TB right away), I did not accept because … I waited to collect my treatment at the clinic for 2 days after receiving the call. I thought no I am killing myself, so I decided to go and take my treatment. But now I have accepted it, and this requires one to not have a fragile heart because you would see yourself doing some negative things like committing suicide. Having TB is painful and when you look at people it feels like they are laughing at you	961, man, early treatment, recurrent TB
Treatment challenges and QoL bottom	(my nephew who I stay with) isolates what I am using, for instance my spoon is removed from his spoon. I think he undermines me since I have TB … This makes me to lose confidence towards my friends. They no longer visit me like before … I used to have three friends but now I am only left with one friend who is not even from my ‘hood. Even himself, he is urged to leave me	1335, man, early treatment, recurrent TB
	(My mother) would ask her brother to go to the clinic on my behalf, so that when I get there, I will be the first or second person to be helped because (I was too sick to wait in the long queue)	647, woman, mid treatment, first TB episode
Inflection and hope	Yes, they are okay, I can do things by myself there is no one that I am bothering anymore, I am no longer a burden I also help around the house	360, woman, mid-treatment, first TB episode
	(My recovery was important to my family because) they did not like my situation before. They know how I used to try to work and make things better, then nothing seemed to be going right. It felt like I am useless, but ever since I started to recover everyone seems to be happy	919, man, recurrent TB, early treatment
Stability with incomplete resolution	my sister at times would suggest to not spend a lot of time with them… and I am not that close anymore with some of (my friends, but) …I only hide (the fact that I had TB) from strangers… they would make me and my family a laughingstock (if they found out). I do not trust people from outside	378, man, end of treatment, first TB episode
	I see (I am progressing), succeeding so that I can be able to study at the University	208, woman, end of treatment, first TB episode

(Participant Description: Participant ID number/gender/phase of treatment/recurrent TB status)

Progressive disability to diagnosis

Classic TB symptoms were described at onset including progressive weakness, cough, weight loss, chills and fever. Initially thought to be flu, most participants reported that symptoms progressed, became worrisome, and disrupted QoL through weakened ability to perform usual activities (e.g., earn income) and changed appearance (e.g., noticeable weight loss). Despite worsening QoL, the decision to seek medical attention was not made easily as it entailed emotional and financial expenditure. Participants recalled needing loans and repeated encouragement from family to visit the clinic or hospital, especially when initial visits did not result in diagnosis. Many described repeatedly engaging with health clinics and advocating for themselves as their QoL continued to decline. QoL losses took the form of growing physical discomfort, lost wages, and increased expenditures for transportation and medications. This man’s experience was characteristic:

“It was in May when I started going to hospital, I went to M… Hospital, but they were not seeing what’s wrong with me and then I was sent to F… Hospital and that’s where I got the information that I have TB. (Before I went to F.. Hospital) I went as far seeing the private doctor, he told me that he doesn’t see anything”

(577, man, completed treatment, first TB episode)

Receiving the diagnosis of TB was an emotional blow for participants who remembered feeling despondent and terrified. Several explained that they feared dying from TB and leaving dependent children unprovided for. One woman said that hearing her diagnosis was the “lowest point of my life” (89, woman, end of treatment, first episode). However, some participants reacted with ambivalence and still others were hopeful at the prospect of starting treatment.

Treatment challenges and QoL bottom

The weeks following diagnosis were beset by multilevel problems which spanned physical, psychological, social, and financial domains. Many reported they were weak, vulnerable, and had little ability to problem-solve at this time. Starting treatment did not bring immediate physical relief to most participants, some of whom were bedridden. Pervasive fatigue and weakness continued to prevent most from earning an income, fulfilling usual caregiving roles, or caring for themselves during the early stages of treatment. Some participants shared that starting treatment worsened their physical QoL due to side effects, especially nausea, dizziness, or a slight increase in TB symptoms.

Early treatment was emotionally charged; participants described weeks and months when they wondered if they would die. Most expressed immense appreciation for family caregiving, but gratitude was also coupled with feelings of guilt. Both men and women spoke of feeling like a burden, draining household resources and being unable to contribute.

Financial stress was ubiquitous, with many participants explaining how the lack of income impacted all other life domains.

“My life is still not satisfactory since I no longer work … I sometimes feel useless since I am the old man of the house without income but only consuming food.”

(919, man, early treatment, recurrent TB)

“I didn’t have money to buy things that I need for myself like boosters since I am sick. My family wouldn’t even have money to buy vegetables... this made me feel like I was losing hope and strength”

(1339, woman, early treatment, recurrent TB).

Several participants mentioned applying for a Disability Grant, but few were successful. Some families had lost not only one but two incomes because of illness and caregiving. Unrelenting food and housing expenses were made worse by increased transportation costs for those who had to travel to collect medication. Many illustrated that they were too sick to walk to the clinic, had no money to pay for transport, and felt trapped, recognizing that without medication the situation would continue to worsen. Each participant struggled for a solution, with some seeking additional loans from family and others skipping treatment and appointments until they could afford the commute. From these poor options, this woman chose the pain and exhaustion of a long walk to the clinic.

“I didn’t have money for transport (since they would not give me a 6-month disability grant) and there’s no transportation for the clinic to deliver my medication. So, I must wake up and start walking to the clinic at 05:00 am”

(533, woman, early treatment, recurrent TB).

Disclosing TB to a trusted inner circle led to a QoL improvement for most. Sharing the diagnosis was harrowing, but many recalled this was done soon after diagnosis because they felt family was entitled to the information needed for essential assistance, and/or they were going to find out anyway. Family caregiving came in the form of encouraging words, special food, relief from household responsibilities, or financial loans and gifts. Many participants explained that they had been too weak to leave home during this period; thus, talking with other household members was the entirety of their social worlds, critical for maintaining motivation and staving off depression.

However, not all participants received such fulsome support after disclosing to their inner circle. Four men and one woman perceived that one or more family members had withdrawn after learning of their TB diagnosis. Some sensed their family blamed them for the situation and/or feared becoming infected. These participants felt hurt, even heartbroken, by such negative reactions. One man began crying when he recalled his mother’s reaction,

“(she) wanted nothing to do with me (after I told her about my TB)... It was not easy. I was not okay”

(1436, man, early treatment, first TB episode).

However, reduced levels of support were not always related to fear and stigma; one woman described that the loss of her income threw the whole household into financial crises and led to verbal conflicts. Her sister had to make the difficult decision to prioritize earning and leave her to care for herself during the day:

“I was staying alone in this room. My sister used to go to work …. she had no choice. I would stay alone yet I can't walk, can't even go to the toilet. And she would leave me with cooked pap (porridge), and I had to eat the pap the whole day because I (couldn’t) do anything”

(239, woman, completed treatment, recurrent TB)

Although not all participants recounted positive experiences with healthcare providers, several expressed appreciation for nurses who supported QoL by connecting them to food rations, providing encouragement, offering TB information, and arranging more convenient treatment locations.

Inflection and hope

A significant shift in QoL occurred when treatment eventually brought symptom relief. Participants depicted how increased stamina, weight gain, and fever reduction not only resulted in them feeling better physically but boosted their self-esteem and provided hope for survival. Participants who were able to return to paid employment said they were pleased that they no longer had to “beg others” for what they needed. Many women explained how they were happy to resume household work and caring for others.

Participants recalled how some problems resolved during this time, either because increasing physical ability provided a solution (e.g., the ability to walk to the clinic to collect medication) or because solutions initiated early in treatment began to bear fruit. One woman who was successful (after multiple application attempts) in obtaining a disability grant described the impact of steady income,

“My quality of life is fine now… Ever since I started granting I know that if I want something in this month, I can wait for my grant money. I am able to budget for my life”

(239, woman, completed treatment, recurrent TB)

Although participants stated they were happy to have regained enough strength to venture beyond home, socializing in wider circles introduced complex decisions about disclosure. Many participants were reluctant to disclose TB outside the family, expecting it would increase the likelihood of being excluded or the target of neighbourhood gossip. Of the participants who did voluntarily disclose outside the family, both men and women reported being hurt by friends and acquaintances who stayed away or called them names. Few reported feeling heartened by neighbours and co-workers who came to bring food, visit, or clean. While some said they chose to avoid social gatherings to protect their physical health (e.g., prioritize rest, avoid alcohol and cigarettes), a few anticipated that attending gatherings would lead to unwanted attention or even humiliation and chose to stay home for that reason. Many perceived that news of their TB was spread through benevolent as well as malevolent community members with the consequence of feeling mocked and devalued.

“(when you are out in the community and) you look at people it feels like they are laughing at you”

(961, man, mid-treatment, recurrent TB).

Physical improvements serve to benefit social wellbeing, increasing participants’ agency over disclosure.

“I have changed, and even gained weight, there is no one who can tell that I am diagnosed with TB if I did not inform them”

(360, woman, mid-treatment, first TB episode)”.

Stability with incomplete resolution

Although some in the mid- to end-of-treatment stages believed they had returned to their pre-TB baseline for physical and respiratory strength, many reported persistent pain, limited stamina, and breathlessness. These limitations reduced return-to-work options, which compounded financial, social, and emotional problems. One woman in post-treatment who was experiencing long-term fatigue described how this impacted her and her children:

“People used to call me to do their laundry, and I would do it here at home … (but I’m so tired now, I can’t). I’ve been sleeping on my bed for four days... like I would spend the whole day sitting here … It has caused me to see myself as a loser, even though on my mind I always try to focus and wonder what my children are going to eat today before going to bed … I don’t remember the last time I ate fruit because I don’t have money to buy it, and these are the things that the body needs and when you lack there is a problem”

(533, woman, completed treatment, recurrent TB)

Participants in this phase expressed a continued need to “take care” by eating well and avoiding dusty, smoky, or cold environments. However, this was not possible for many who lacked funds for sufficient, nutritious food, or safe housing. Many participants described how losses in the social domain persisted, including sadness because friends and family were avoidant or otherwise treated them badly. There were few differences between the narratives of participants in mid-late treatment compared to those who had completed. However, some interpreted the end of medication as an endorsement of non-infectiousness, allowing them to stop masking and distancing practices, giving them a social and psychological benefit.

Theme 2: personalized rationale

When asked to describe QoL in their own words, participants provided highly varied, even juxtaposed answers, supported by personalized rationale. In formulating responses, most began with an overall QoL rating, followed by a statement comparing current circumstances to another time in their lives, or a personally held goal or standard. Many carried on by referencing a specific QoL domain of particular importance (Table 3 contains exemplar quotations). For example, this woman succinctly expressed her QoL rating (average), her comparator (a previous phase in her life), and the primary QoL domain driving her assessment (financial).

Table 3.

Illustrative quotes of personalized rationale

Quote	QoL domain	Participant Description
By the quality of my life now? After taking my first doses of treatment, I noticed that there is a change, I even stopped sweating … (Also, the) things that I have satisfy me, I have no complaint about things I have. I can say my quality of life is good	Physical and financial	496, man, mid treatment, first TB episode
(my quality of life is now) better…I was not aware that I am this safe, that my family loves me so much. (I noticed that) …. in this space of having TB	Social	1632, woman, early treatment, first TB episode
I stay at home, I am no longer drinking or smoking…. I am emotionally well, (I would say my quality of life is) good	Lifestyle/emotions	208, woman, end of treatment, first TB episode
I: what changes in your quality of life have happened since you started TB treatment? P: I am no longer myself; I am not able to do many things, I do not know maybe it is because I once defaulted on my HIV treatment, …, I cannot do my own laundry, even here at home they do not allow me to even wash dishes because once I touch water, I become very sick, I do not have strength that much, I cannot walk long distance	Physical/social	695, woman, mid treatment, first TB episode
I don’t have money, if I could get it would uplift my quality of life, 12 months after you would notice a change in me. I have so many ideas, like I could even sell children’s stuff, bake fish and sell it in the community, but financially I am really struggling I don’t want to lie	Financial	533, woman, end of treatment, recurrent TB

(Participant Description: Participant ID number/gender/phase of treatment/recurrent TB status)

“My quality of life is average because...... I was sick you see. The money is the problem. So, there’s no money, no progress. At least we have food. The kids go to school, but luxury is gone now. That is why I am saying its average. We used to go to the bank and withdraw money (throughout the month, but) now it gets finished before the month’s end. … We can survive, but we are fighting.”

(89, woman, completed treatment, first TB episode)

Participants used words such as low, painful, normal, good, and better to rate their QoL, and there were no overt commonalities among those who offered positive or negative ratings, except that those with recurrent TB more consistently expressed dissatisfaction related to inability to work, financial need, and the negative impact this had on the household. Physical improvement was also not universally tied to better QoL, as many participants during late and end-of-treatment phases experienced symptom improvement but continued to describe their QoL as low.

Likewise, a similar set of circumstances was also not tied to a similar QoL rating. For example, one man who was too unwell to work or study stated, “I am living an extremely low quality of life” (742, man, completed treatment, recurrent TB). He explained this was because he could no longer pursue the law degree he had been on track to complete. However, another man who was also too unwell to work stated he was pleased with his QoL because this was the strongest he had felt compared to three previous rounds of TB treatment. Similarly, two women, both financially dependent on their families, also had differing assessments. The first woman, whose opinion was more typical, felt her QoL was poor because she was always having to ask others for things she needed. However, the second woman was happy because whenever she needed anything, all she had to do was ask and her family would provide.

Participants referenced a wide array of standards or comparators for current QoL, often contrasting current circumstances with life before TB, or the time when TB symptoms were much worse. Ability to fulfil social roles (e.g., providing for children) and progress towards personal goals (e.g., owning a farm, starting a business) were often mentioned as a gauge.

“(my QoL is) now better. It is not the same as when I started the taking the TB treatment…(because) at first, I could not do anything and now I can”

(695, woman, mid treatment, first TB episode)

“My quality of life is now low. It is very low because … I don’t have everything I need. If I had everything that I need I would say my quality of life is high…. like I don’t have my own house, I stay here at home (with my parents), I don’t have a car, and my peers have cars, you, see I don’t even have a wife.”

(961, man, mid-treatment, recurrent TB)

Most participants focussed on a specific QoL domain when discussing their assessment. Physical ability and finances were mentioned most often, with some commenting positively on regained energy and strength or, conversely, on limited stamina and inability to access basic necessities. Again, those with previous/recurrent TB commonly reported physical and financial limitations, and few were able to return to paid employment. Overwhelmingly, participants judged QoL by their ability to work, either at home or for an income. One woman illustrated how she had lost her identity as a productive person, and many explained that their primary concern was looking after dependants.

“Oh, I miss working, I would love to be me who is doing things, … I used to work at (community development coop) when I had energy, and now I don't have energy. Like I miss me”

(486, woman, mid treatment, recurrent TB).

“I always think about my child… She is in Cape Town… I am unable to send her money since I stopped working and that’s the only thing I think about”

(1436, man, early treatment, first TB episode)

Several participants described wider issues in their environment; fear and frustration regarding neighbourhood crime, and discontent with healthcare and social supports were articulated by many. Women were more likely to cite the presence of close relationships as supporting rationale for positive QoL assessments.

Discussion

We found participants taking treatment for TB in South Africa portrayed a common trajectory for changes in QoL over the TB care continuum, though perceptions and self-assessments of QoL were deeply individual and highly varied. Our findings add a rich chronology to the growing body of evidence in TB-QoL with important implications for the timing, composition, and tailoring of interventions.

Degradation of QoL for our participants began at symptom onset, worsened upon diagnosis and treatment initiation, and remained poor for weeks to months until the point of symptom alleviation. Once physical QoL improved, wellbeing in social, emotional, and financial domains also increased through control over disclosure, bolstered self-esteem, and ability to contribute to the household. However, gains plateaued, and all was not well for those who had completed treatment. Many described living in a fragile body, limited by persistent fatigue and breathlessness, ongoing financial concerns, and continuation of a diminished social circle with broken relationships.

Shifts in wellbeing during TB treatment have been documented elsewhere [1, 11, 38, 51]; however, the implications of these dynamic experiences for QoL enhancing interventions have not been widely discussed. Given that QoL is low at the time of diagnosis and due to the chronicity of TB, it will likely remain low or even decline for weeks or months, supportive interventions must be immediately available, easily accessible, and sustained at high intensity throughout early treatment. As other researchers in South Africa have found, interventions with lengthy, complex application processes or delayed onset will not adequately meet the considerable needs of people with TB [34]. Further, support programs must continue after treatment completion if the reinforcing relationship between TB and socioeconomic disadvantage is to be broken. Our research, supported by the growing post-TB body of evidence, demonstrates that acute physical, psychosocial, and financial problems may diminish as treatment progresses, but many problems endure, degrading QoL for a lifetime [52–56]. Accessible, intense, and sustained interventions to meet these persistent needs are crucial for all people experiencing TB, but particular attention is needed for those with recurrent disease whose problems compound with each episode. Given that approximately 195,000 people were diagnosed with TB in 2024 in South Africa, and 56% incurred catastrophic costs, the budget implications of improving and sustaining income support may well be substantial and will require significant political will and multisectoral efforts [57].

Previous studies have shown that TB is associated with food insecurity, causes catastrophic financial implications and degrades QoL across all domains [1, 11, 38, 58–60]. Findings from several South African studies confirm quantitative research from other settings that indicators of poverty (e.g., unemployment, type of dwelling) are associated with worse QoL [8, 19, 20]. Our results suggest that physical inability to engage in paid employment is likely a key factor in QoL decline for people with TB. Participants in our study described relying on physical labour to earn income, and as TB hampered the ability to work, problems related to food insecurity, family conflict, and low self-esteem soon followed. Our results are reinforced by qualitative researchers in Vietnam and South Africa who found that physical ability to work and financial concerns are top priorities for people in TB treatment [24, 61]. For the few participants in our study who were able to secure a Disability Grant, problems soon resolved, suggesting that the ability to meet basic needs may be a precondition for QoL. Although people with TB require a comprehensive package of services, income support for the family/household should be prioritized and attended to first and foremost. Growing research on social protection, including the Bolsa Familia, for families affected by TB has demonstrated positive treatment outcomes [62–64]; though the direct impact on QoL is unknown. People with TB are also known to derive numerous benefits from education and counselling (individual and family) with some studies showing a positive impact on QoL [65, 66]. Education and counselling interventions could be adapted to include practical and psychological strategies for dealing with reduced functional mobility and inability to carry out social roles (e.g., employment and family caregiving) for a prolonged period. Vocational rehabilitation, linked to positive outcomes for individuals with chronic conditions, is an emerging area of study in TB and may have helped some participants in our study return to work [67, 68].

To date, researchers synthesizing the TB-QoL evidence base have been unable to draw clear conclusions regarding the impact of demographic factors such as age and gender on QoL [1, 11]. We found close social relations may be more relevant for women’s QoL and more men than women reported exclusion or distancing by family members. Nevertheless, this lack of clarity supports our assertion that personal values and expectations—often stemming from prior experiences, such as previous TB, financial situation, and social exclusion—strongly shaped perceptions of QoL. We were surprised by the large variability amongst participants’ QoL assessments and in exploring individuals’ rationale, came to appreciate the subjectivity at the heart of the WHO definition. QoL is defined as a person’s unique “perception of their position in life in relation to (their own) goals, expectations, and standards” and framing it merely as health divided into physical, emotional, and social ‘buckets’ may dilute important understandings. It was crucial to the interpretation of findings that we viewed QoL as an individual’s complex and intimate assessment of where they are in life compared to where they want to be.

Aging and disability researchers have also noted the role of subjectivity in QoL. Several studies from this field have demonstrated that instead of symptom severity and physical ability being closely associated with QoL, a sense of mastery and ability to function in the environment are stronger determinants [44, 69–71]. Much of the research exploring the subjectivity of QoL is based on the work of theorist Sol Levine, who emphasized a salutary, social framing, explaining that QoL is adequate when individuals can access resources needed to fulfill the essential roles of “worker, family member, citizen or friend” [5].

Levine’s emphasis on the social nature of QoL resonates with the concept of Ubuntu, an African-humanist concept, where wellbeing is defined in terms of connectedness and the perception of living harmoniously with others [72, 73]. Aligned with these perspectives, we noted that participants commented positively on their QoL when they were physically able to work and felt they were moving toward their (often family-oriented) goals. Care received from family, and the ability to care for others were frequently cited as contributors to QoL. Weight gain and improved appearance were important factors in restoring social status and re-integration into community. Those who were dissatisfied with their QoL described feeling burdensome to family, disregarded, or separated from others, and unable to move forward. Other researchers have drawn upon Ubuntu-related concepts to envision how people with TB could be supported in South Africa [74, 75] however, QoL-enhancing potential has not yet been investigated. Given that most participants in our study viewed their QoL as connected to the wellbeing of others, this may be a useful lens for future QoL research in South Africa.

Viewing our results through the lens of subjectivity and connectedness emphasizes why supportive interventions for people with TB must not only be comprehensive and sustained throughout and beyond treatment, but also personalized, empowering, and delivered in the setting of long-term relationships with practitioners. It is only through such relationships that practitioners can support individuals towards meaningful (often family-oriented) progress. Indeed, there is considerable evidence that differentiated models of TB care are needed [76–78]. Recent studies of these models are showing benefit; for example, a trial of treatment counselling delivered by a consistent pharmacist has demonstrated a significant increase in QoL for people in TB treatment [79, 80].

Based on our research, QoL could be improved by increasing the accessibility and duration of income support for people experiencing TB. TB programs could also consider supporting QoL by offering routine psychosocial counselling directed at helping people cope with loss of functional mobility and alternate means to resume progress towards personal and collective goals. However, healthcare practitioners cannot deliver this type of personalized support on their own but require backing from models of care based on continuity and trust which provide the staffing, training, physical space, and educational materials to allow them to deliver high-quality care.

The strength of our study lies in the application of a strong conceptual framework. Utilizing the theory of biographical disruption and the WHO QoL framework allowed us to observe nuanced domain-specific changes and note the importance of personal perspectives in our data. The high level of detail presented here has strong application to clinical care and will allow readers to assess the transferability of these South African findings to their own setting. A critical limitation of our study was that we were unable to follow the same set of participants longitudinally, which may have allowed us to learn more about shifting QoL perspectives. Researchers exploring QoL in future could consider longitudinal research, which may enable more personalized observations, including exploration of gender differences which have been noted by others [55]. Nevertheless, by sampling participants who were in early, mid, and end stages of treatment, we were able to generate a rich, well-developed understanding of needs across various stages of care. Another limitation is that participants’ responses were translated from isiXhosa to English for analysis and interpretation. It is possible that some of participants’ original meaning was lost in this process; however, we minimized this limitation by having each transcript reviewed by two to three bilingual team members and involving isiXhosa speakers in data analysis and interpretation.

Conclusions

QoL for people experiencing TB in South Africa is poor, eventually improves, but is still not satisfactory for many at the end of treatment. Despite the personal and unique nature of QoL, financial distress was common, and the pervasiveness of this concern speaks to the political and structural forces as a root driver of QoL inequities. Ensuring people and families experiencing TB have what they need for a life which they deem to be good requires political commitment and funding for personalized, supportive TB care. Such care should consist of an adaptable package of physical, psychosocial, and financial interventions, tailored to individual goals, sustained beyond treatment completion, and delivered through empowering, trusting relationships.

Authors’ contributions

N.B, A.M.K, A.M.M, A.D, L.D.V, and D.O conceived of the study and supported study design. A.M.M, A.M. K, and A.D led in grant acquisition. L.M and N.B oversaw data collection with support from K.F, L.D.V and D.O. N.B, L.M, and M.G conducted data analysis and interpretation, supported by L.D.V, A.D, and K.F.  N.B prepared the manuscript with support from A.D. All authors read and approved the final manuscript.

Funding

This study was funded by a grant from NIH/NIAID (R01 5-AI150485-04; MPIs: AMM and AMK). N.B is supported by a CANTRAIN Fellowship salary award.

Data availability

Relevant study data and data collection tools are presented in the text and supporting files. Ethical approval for this study does not permit public disclosure of raw data due to the risk of inadvertent identification of individuals. Readers interested in more information about the methodology and findings of the study may contact the corresponding authors. Requests will be subject to ethical and institutional review.

Declarations

Ethics approval and consent to participate

This study adhered to all elements of the Helsinki Declaration and was approved by the Eastern Cape Provincial Research Office (Ref #: EC_202110_011), the University of Cape Town Human Research Ethics Committee (HREC Ref: 543/2020), and Eastern Carolina University Institutional Review Board (UMCIRB 21–000854). Participants gave informed written consent for baseline data collection, follow-up questionnaires, and follow-up interviews.

Consent for publication

Not applicable.

Competing interests

Amrita Daftary is an Editorial Board Member of BMC Global and Public Health. The remaining authors declare no competing interests.