Social Science & Medicine 209 (2018) 145–151

Contents lists available at ScienceDirect

Social Science & Medicine

journal homepage: www.elsevier.com/locate/socscimed

Tuberculosis patients and resilience: A visual ethnographic health study in T

Khayelitsha, Cape Town
Anne Lia Cremersa,b,∗, René Gerretsb, Christopher James Colvinc, Monwabisi Maqogic,
Martin Peter Grobuscha
a
Center of Tropical Medicine and Travel Medicine, Department of Infectious Diseases, Division of Internal Medicine, Academic Medical Center, University of Amsterdam,
Amsterdam, the Netherlands
b
Faculty of Social and Behavioural Science, Department of Sociology and Anthropology, University of Amsterdam, Amsterdam, the Netherlands
c
Division of Social and Behavioural Sciences, School of Public Health and Family Medicine, University of Cape Town, Cape Town, South Africa

A R T I C LE I N FO A B S T R A C T

Keywords: Khayelitsha, one of the biggest and poorest townships in South Africa, has a well-resourced tuberculosis (TB)
Tuberculosis programme with an interdisciplinary approach addressing the medical, social, and economic forces impacting TB
Visual ethnography care. Nevertheless, the area remains burdened with one of the highest TB rates in the world. Using a resilience-
South Africa based approach, we conducted a critical ethnographic study to develop deeper insights into the complexities of
Resilience
patients' experiences with TB and care. Between October 2014 and March 2015, we approached 30 TB patients,
10 health-care workers, 10 pastors, and 10 traditional healers, using participant observation, in-depth inter-
views, and focus group discussions. In addition, seven key informants were filmed on a daily basis by the lead
researcher. The work reported here (both text and short videos) illustrates the various manifestations of resi-
lience that patients demonstrated and how these impacted on decisions involving treatment seeking and ad-
herence. We have synthesized the data into the following inter-related themes: TB aetiologies and treatment; the
embodied experience of TB treatment; alcohol consumption; financial constraints; and support and stigma. The
findings from this research highlight patients' strategies for adapting to adversities, such as pausing TB treatment
when lacking food to avoid becoming psychotic, consuming alcohol to better cope, obtaining social grants, and
avoiding stigmatizing attitudes. Some manifestations of resilience may interact and, inadvertently, undermine
TB patients' health. Other aspects of resilience, such as strong community ties, elicited long-term health benefits.
TB programs would benefit from a resilience-building approach that builds on pre-existing strengths and vul-
nerabilities of TB patients and their communities. With the use of short videos, we provided patients with an
alternative path for expressing their experiences, which we hope will support synergies between patients, re-
searchers, and policy-makers for improved TB programmes.

1. Introduction susceptible (DS) TB and drug-resistant (DR) TB burdens in the world

(MSF, 2011a,b).
South Africa faces one of the worst tuberculosis (TB) epidemics and Quantitative studies have provided insights into what factors in-
highest human immunodeficiency virus (HIV) rates in the world (WHO, fluence the functioning of South African TB Programmes, such as TB
2013). Khayelitsha, a township in Cape Town, is a focal point in this TB rates (Wood et al., 2011), DR-TB development, HIV co-infection
epidemic. The public healthcare system in Khayelitsha—and especially (SANAC, 2012), socio-economic determinants (Harling et al., 2008;
its TB services—is actively supported by the international non-gov- Pronyk et al., 2001), alcohol misuse (Otwombe et al., 2013), organi-
ernmental organization Médecins Sans Frontières (MSF). Together, they zational obstacles (Colvin et al., 2003), an integrated HIV/TB policy
have launched a comprehensive interdisciplinary TB control pro- (Uyei et al., 2014), and collaboration between traditional healers and
gramme ('the Khayelitsha programme') that addresses the medical, TB health facilities (Colvin et al., 2003). However, these studies gen-
cultural, social, and economic aspects of TB care. Despite this com- erally do not afford an in-depth understanding of how these factors play
prehensive programme, this area still has one of the highest drug- out in the everyday lives of TB patients. In contrast, published

∗
Corresponding author. Meibergdreef 9, 1105AZ, Amsterdam, the Netherlands.
E-mail addresses: [email protected], [email protected] (A.L. Cremers), [email protected] (R. Gerrets), [email protected] (C.J. Colvin),
[email protected] (M. Maqogi), [email protected] (M.P. Grobusch).

https://doi.org/10.1016/j.socscimed.2018.05.034
Received 11 August 2017; Received in revised form 13 May 2018; Accepted 16 May 2018
Available online 25 May 2018
0277-9536/ © 2018 Elsevier Ltd. All rights reserved.
A.L. Cremers et al. Social Science & Medicine 209 (2018) 145–151

qualitative research on patients' experiences with TB and TB care in such multiple manifestations of resilience may have divergent impacts
urban South Africa offers insights into patient's MDR-TB and TB treat- on TB patients' well-being.
ment adherence (Birch et al., 2016; Daftary et al., 2014), the combi- A resilience-based approach may inform TB programmes about the
nation of TB and HIV treatment (Daftary and Padayatchi, 2013), and importance and complexities of pre-existing strengths and vulner-
TB-related stigma (Daftary, 2012). However, most of these qualitative abilities of TB patients and their communities. With the use of visual
studies in South Africa were conducted at clinics and few used more in- ethnography and short videos, we offered patients a voice and hope-
depth ethnographic methods. fully contributed to the creation of new synergies between patients,
This ethnographic study examined patients' experiences with TB researchers, and policy-makers for improved TB programmes.
and TB treatment and aimed to enhance our understanding of why the Moreover, visual methods may strengthen the impact of ethnographic
Khayelitsha programme is still struggling to quell the TB epidemic. health research on policies and discourse (Cremers et al., 2016).
Ethnography provides context-specific insights as researchers immerse
themselves into the lives of research subjects by fostering in-depth re- 1.1. Context and research setting
lationships over an extended period of time. This approach enabled us
to examine gaps between policy and practice, the slippage between South Africa is facing a TB incidence of 1003/100,000, 8.5% drug-
what people say they do and what people actually do in everyday life resistant (DR-) TB, and a 65% TB-HIV co-infection rate. The overall TB
(Lambert and McKevitt, 2002). Practices may reveal what lies beyond mortality rate is about 228/100,000 (WHO, 2013). In 2012, only 6494
our respondents' words (Panter-Brick and Eggerman, 2017). Under- of the 15,419 multidrug resistant (MDR-)TB-patients started treatment
standing patients' complex realities and their practices and perspectives (WHO, 2013). About 1/3 of MDR-TB patients ceased treatment pre-
within these realities enables a richer understanding of how TB policies maturely (Shean et al., 2008).
play out in the day-to-day lives of those with TB, and, in turn, of how Our research took place in the South African township of
these policies shape patients' responses to treatment. Globally, various Khayelitsha, the largest township in Cape Town with nearly 1,000,000
ethnographies have examined TB programs and patients' treatment inhabitants. Half of its inhabitants are not officially registered and the
adherence (Gerrish et al., 2013; Koch, 2013; Harper, 2006; Greene, majority live in informal dwellings. As a result of the segregationist
2004). However, there remains a need for more ethnographic research policies of the Apartheid regime, the inhabitants continue to be pre-
to understand context-specific factors and dynamics in order to better dominantly from the Xhosa ethnic group (CoCT, 2006). Crime rates are
tailor TB services to people's realities (Mason, 2014; Harper, 2006; very high in Cape Town (Jean-Claude, 2014), and especially in
Farmer, 2000). Khayelitsha (Nleya and Thompson, 2009). Major contributors to high
TB is one of many adversities people in Khayelitsha face, as they are crime rates are poverty and high unemployment rates (Jean-Claude,
confronted daily with disease, pervasive poverty, hunger, unemploy- 2014). South Africa is an upper middle-income country (World Bank,
ment, traffic accidents, and violence. Such adversities are often asso- 2016), but has high levels of economic inequality, resulting in pervasive
ciated with poor health outcomes (Wexler et al., 2009). The public poverty. Black Africans were strongly marginalised and discriminated
health literature on the social determinants of health has put a great against during the Apartheid regime, and this still impacts on their
deal of effort into examining the pathways between social injustices and socio-economic and health status in post-Apartheid South Africa (Jean-
poor health (Farmer, 2000). In contrast, resilience-based approaches to Claude, 2014; Packard, 1989). Consequently, this part of Cape Town is
health provide an alternate emphasis: while acknowledging the health known as “Cape Town's poverty trap” (CoCT, 2006).
consequences of suffering, vulnerability, victimization, and risk, these TB care (integrated with HIV care) is available in, amongst others,
approaches also highlight strengths, capabilities, and capacities for the Khayelitsha Site B Ubuntu Community Health Clinic and a smaller
well-being (Panter-Brick, 2014). Thus resilience-based approaches seek primary health care clinic in Town 2. Here, TB patients on Direct
to examine these experiences within a broader context that highlights Observed Therapy (DOT) collect their anti-TB drugs at the clinic on a
agency as people deal with adversity. Individuals, families, and com- daily basis from Monday to Friday during a treatment course of six
munities often find creative ways to support and sustain themselves and months. A community-based Direct Observed Therapy (DOT) pro-
others. They seek to counter, transform or mitigate challenges they gramme was piloted: after two weeks of DOT, patients may continue
encounter in life. Our TB patients' narrations of suffering and hardship treatment at home instead of at the clinic, provided that a community
likewise offered compelling accounts of resilience. In this article, the care worker (CCW) considers them sufficiently responsible to manage
concept of resilience refers to how individuals are able to socially their own care (Atkins et al., 2011).
function and emotionally adapt themselves despite living in a context of Moreover, Khayelitsha is one of the few places worldwide where
severe adversities (Masten, 2006). new DR-TB drugs are both highly needed and available (MSF, 2016).
The concept of resilience has been widely applied in the global MDR-TB signals TB infection that is resistant to the first-line anti-TB
health literature to describe people's diverse attempts to overcome drugs isoniazid and rifampicin, and extensively drug resistant TB (XDR-
adversities, for example, through resource negotiation (Woodward TB) indicates resistance to isoniazid and rifampicin, to any fluor-
et al., 2017), psychological coping strategies (Waugh and Koster, 2015), oquinolone, and to any of the injectable anti-TB drugs (WHO, 2010). At
and the strengthening of social structures, community functioning, and the time of this research, MDR-TB patients followed a treatment of 21
social relationships (Perez-Brumer et al., 2017; Zraly and Nyirazinyoye, pills daily for two years and one injection daily for eight months. MSF
2010; Wexler et al., 2009). Resilience is often linked to better-than- has launched the first project for treatment of DR-TB-patients at pri-
expected social, psychological, and physical outcomes given the sig- mary health care level. Additionally, the Khayelitsha programme ad-
nificant challenges individuals and communities often face (Vanderbilt- dresses social and economic risk factors via counselling, sensitization
Adriance and Shaw, 2008). programmes, community care workers, social grants, and food supple-
Our findings confirm that the link between resilience and health ment programmes (MSF, 2005; MSF, 2011a,b).
benefits is complex, as many TB patients struggle to survive in a context
with multiple and varying adversities. A person may show resilience in 2. Methods
one domain (family life), but not in another (employment) (Southwick
et al., 2015). Moreover, resilience is not static and uniform but arises One researcher (ALC) and a local research assistant (MM) conducted
through processes and may change over time (Fergus and Zimmerman, a five-month ethnographic research project in Khayelitsha, with sup-
2005). In this article, we would like to add that the various manifes- port from a local researcher [CC], between October 2014 and March
tations of resilience may interact with each other, i.e. resilience in one 2015. Through chain-referral sampling-techniques, 30 DS-TB and DR-
domain can influence vulnerability in another domain. Consequently, TB-patients were recruited for various in-depth interviews at their

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Table 1
Methodological approach for study in Khayelitsha, Cape Town.
Method Participants Timing/frequency/place Research topic

Participant observation TB-patients and For 5 months on a daily basis on various places in the Relation between patients and health care services,
their families. community; medication, stigma, poverty, death, hope, position in
Health workers Patients' homes, visits to the clinics and hospitals, churches, society, social support, group dynamics
Community- houses of traditional healers, pharmacies, shopping, market,
members organizing TB-grants, meetings and presentations of NGOs,
(preparation for) funerals, celebrations, social events,
barbeques
In-depth interviews 30 TB-patients 1-3 interviews with each respondent of 1–2 h at patients' TB-perceptions, medical knowledge, poverty, social
10 health-workers homes or at MM's home support, TB-grant, stigma, structural obstacles to TB-
10 traditional 1-2 interviews with each respondent of 1 h at respondents' treatment
healers homes or at MM's home TB-policy, TB-treatment, patient contact, TB-
10 pastors perceptions, poverty, stigma, structural obstacles to
TB-treatment, work relation with other healers in the
area
Focus group discussions 10 TB-patients 2 meetings of 2–3 h in MM's church Interaction and discussion between participants
10 TB patients regarding concerns, struggles, ideas, wishes, norms,
and values
Visual methods, e.g. in-depth 5 TB-patients Daily visits during the 5 months study period in various places Life, community, social support, stigma, poverty,
interviews, participant 1 community-care in the community treatment, experience with TB, funerals
observation worker

homes. Included respondents consisted of patients with active (extra-) presentations. Participant observation generated rich data regarding
pulmonary DS-TB or DR-TB-infection who had just started, were re- the social and cultural context and patients' everyday life experiences
ceiving, had previously received anti-tuberculosis treatment, or had with TB. This information partially overlapped with visual data col-
recurrent TB (i.e. had TB for the second/third time through relapse of lection, which led to intense researcher-respondent engagement, gen-
previous TB infection or infection with a new strain) (Chaisson and erating a high level of trust and valuable informal conversations. To
Churchyard, 2010). Patients were above the age of eighteen and at- foster informal interview settings, we used photo-elicitation techniques
tended or had attended one of the ambulatory TB clinics at Site B (Harper, 2002) and asked respondents to keep a diary (Elliott, 1997).
Ubuntu or Town 2. Additionally, two focus group discussions (FGDs) The additional value of these alternative methods was to gain a deeper
(10 patients per group) took place in the Town 2 community. We also understanding of the richness and complexity of people's experiences
interviewed 10 employees of clinics (nurses and CCWs), Treatment and to collect data regarding emotions and non-verbal behaviour and
Action Campaign (TAC), and MSF, 10 traditional healers, and 10 pas- interactions.
tors to gain more insight into the social context. Participant observation During and after data collection, we used an inductive approach to
took place from morning until evening, during weekdays and on analysis (Glaser and Strauss, 2009). In-depth interviews and FGDs were
weekends, at respondents' homes, neighbourhoods, churches, and fun- audio- and sometimes video-recorded, transcribed verbatim, and
erals. screened multiple times by ALC. Field notes of participant observations,
Of the 60 respondents, five patients, one pastor and one CCW were films, and transcripts were first coded into meaning units and then
additionally asked to participate as key informants for the visual divided into categories and subcategories. This was checked by MM.
component of the project and were filmed on a daily basis by ALC Open data collection techniques led to the emergence of themes for-
(Table 1). Selection occurred after one month of ethnographic research mulated by respondents in order to avoid researcher-defined categories.
and was based upon respondents' willingness to discuss TB-related With Qualitative Data Analysis and Research Software (ATLAS.ti, 7th
matters, their ability to speak fluently and coherently, and their passion edition), we identified recurring themes, analysed structures, meaning,
to change the marginalized situation that most people living in Town 2 and context.
were facing. The video camera was not taken on all occasions and even Ethical clearance for the study was obtained from the University of
if the camera was present, this did not seem to hinder interaction with Cape Town (HREC REF 726/2014). Verbal informed consent was re-
participants as the camera was either in a corner on a tripod or hand ceived from each participant before recruitment, interviews, and ob-
held. Due to the unstructured character of the interviews and partici- servation. We presented ourselves as researchers who wanted to gain a
pant observation, respondents were able to guide the visual data col- better understanding about TB and how TB may affect people's life in
lection telling the researcher what to film. They explained they had the Town 2. We explained our goals to write an article and make a film with
feeling that they were given a platform to speak their minds. During our the hope that people's experiences might help inform health policies.
fieldwork, we sometimes looked back at the filmed materials together Because of the relations built with patients and community members
with our key respondents to illustrate what kind of data we collected and the fact that we attended many events in the course of five months,
and how they were presented. They all agreed to the lack of anonymity we were able to attend churches (services) and funerals in an integrated
that is associated with interviews captured on film. We did agree that fashion. We used pseudonyms and unidentifiable descriptions of re-
respondents would always be informed if the visuals were used. spondents throughout this article to ensure anonymity and con-
The in-depth interviews contained semi-structured, open-ended fidentiality. The key respondents participating in the visual ethno-
questions in English or translated in isiXhosa by MM (isiXhosa- graphic part of this study signed separate consent forms, because they
speaking). Questions covered TB perceptions, medical knowledge, so- will not remain anonymous.
cial support, structural obstacles to TB treatment, poverty, and sensitive
topics such as stigma. This was supplemented by the FGDs, which
elaborated on these topics and initiated interaction and discussion re- 3. Results
garding conflicting perceptions, opinions, and experiences of partici-
pants. To enhance group dynamics, we used various research techni- The average age of the TB patients in our study (N = 30) was 37
ques, such as word clouds, theme selection, ranking, and poster [range 19–89 years]. Thirteen were male, 14 were in a relationship, and
nine were employed. Twelve patients had DS-TB, seven MDR-TB, and

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one XDR-TB. Ten patients had recurrent TB. We have synthesized the injections as a horror. Side-effects were described in detail during FGDs
data into the following inter-related themes: TB treatment and aetiolo- and informal conversations and consisted of haematomas on the but-
gies; the embodied experience with TB treatment; alcohol consumption; fi- tocks, painful legs hindering walking, and hearing loss. One patient said
nancial constraints; and support and stigma. We present our findings with he was relieved his MDR-TB turned into XDR-TB, because that meant no
text and short videos to engage the senses of our readers and create a more injections. Few patients continued with injections. Some decided
more empathetic understanding about experiences of patients with TB to only continue with oral medication. Yet others discontinued all
and care. treatment, because they feared dying of side-effects (Video 4).
Supplementary video related to this article can be found at http://
3.1. TB aetiologies and treatment dx.doi.org/10.1016/j.socscimed.2018.05.034.
When I tell my side effects to the nurses, no one seems to listen to
The majority of respondents explained they had received a lot of listen to me. She shouts at me all the time. And she threatened me that
health education about TB. Most patients stressed the fact that everyone she would stop my government grant. After that, I tell myself, this is not
could obtain TB. Yet, various respondents cautiously explained that TB right. Because I will end up dead. I know what I was doing, it was
was more often found in poor and dirty households. Health workers wrong. To leave my treatment. To not finish. […] But I can't do it
often stressed that HIV, smoking, and drinking were risk factors for TB. anymore. I can't (Nokuzola, MDR-TB-patient).
During FGDs and interviews, respondents often mixed up risk factors Nokuzola continued injections for months despite reporting severe
with TB aetiologies. Health workers explained that the Impundulu myth side-effects at the clinic. She explained that health workers accused her
(about a big bird that kicks you in the chest so you start coughing blood), of non-adherence with treatment in order to receive a governmental
and the idea of edliso (a black poison caused by witchcraft) were TB ae- grant. This resonated with some respondents who argued that people
tiologies used in the past, but rarely mentioned nowadays. More current were purposely getting infected with TB in order to get a grant.
TB aetiologies mentioned were cold weather, wetness, sleeping around, Nokuzola, however, worried about losing her hearing, and additionally
heredity (referred to as family-TB), and sharing glasses or cutlery with explained being afraid of losing her mind and sight, as her complaints
TB-infected people (S0277953618302776). remained unheard. This was the reason why she decided to stop
Supplementary video related to this article can be found at http:// treatment and rely on prayers only.
dx.doi.org/10.1016/j.socscimed.2018.05.034.
I was so shocked before, that one. The first TB. I never get sick. And I 3.3. Alcohol consumption
am 52 now. And I asked myself where does it come from, this TB? Even
in my family, no one has TB, where does this TB come from? I was Many patients were aware of the devastating effects of alcohol on
thinking that maybe I was infected by my friend. Maybe I shared the their TB and the potential development of drug resistance.
glass with my friend. Or we share the same cigarette (George, DS-TB Nevertheless, about one third consumed alcohol, and at times, a couple
patient). of our male and female patients seemed too drunk for interviews.
All patients attended or had attended a clinic for biomedical TB Pastors explained some patients had been drunk for days. Some older
treatment. A few patients mentioned they additionally had visited faith respondents who had been politically engaged in the fight against the
or traditional healers to cure their TB. Most traditional healers and all Apartheid regime described feeling disillusioned, because persisting
faith healers we spoke with explained they were not able to cure TB economic constraints hindered them from living life to its fullest po-
(alone) and referred people to the clinic. tential. They explained how alcohol consumption helped to reduce
feelings of vulnerability (Video 5).
3.2. The embodied experience of TB-treatment Supplementary video related to this article can be found at http://
dx.doi.org/10.1016/j.socscimed.2018.05.034.
The harsh side-effects of MDR-TB treatment were a central theme Something is wrong. I just want to drink. You understand? Even in
for both patients and health workers and led to difficulties with treat- the morning, during the day. [I am] unemployed. With him [son] in the
ment adherence. DS-TB patients also referred to very similar bodily school. There is no income. I can't sleep. I'm just restless and vulnerable.
experiences, especially in the case of comorbidities. Patients intensely I'm just telling myself, I go to the clinic, I go … Up until I was taken to
described how the high load of toxic medications seemed to destroy the hospital (Khulish, DS-TB-patient).
their bodies. They mentioned how the TB pills made them throw up and Alcohol gave some patients a feeling of being in control again, to
feel nausea, dizziness, weakness, and hunger. Moreover, both DS-TB forget problems, and free their minds. Some respondents explained that
and DR-TB patients described psychotic incidences due to the medica- alcohol consumption allowed them the chance to ignore their health
tion (Video 2). status up until they developed a severe manifestation of TB.
Supplementary video related to this article can be found at http://
dx.doi.org/10.1016/j.socscimed.2018.05.034. 3.4. Financial constraints and social grants
During participant observation, respondents sometimes warned the
researcher that they had just taken drugs that could potentially trigger Patients with a low socio-economic status received a social grant
unpredictable behaviour. Various DS-TB and DR-TB patients explained from the government and patients weighing under 40 kg received food
they feared becoming crazy because of the drugs and potentially supplements. During participant observation, the grant and extra food
harming themselves or people around them. Some respondents men- was often shared with the whole family; for some turning the patient
tioned they particularly feared DR-TB patients for their dangerous be- into a bread-winner. A few respondents mentioned that relapse or MDR-
haviour (Video 3). TB-patients were often non-compliant TB patients who wanted a grant
Supplementary video related to this article can be found at http:// from the government (Video 6).
dx.doi.org/10.1016/j.socscimed.2018.05.034. Supplementary video related to this article can be found at http://
There is another TB, I am scared of that. MDR. The people they say dx.doi.org/10.1016/j.socscimed.2018.05.034.
it's too dangerous. Because the people who have MDR-TB, they pass Most TB patients had financial problems, mostly due to unemploy-
away. Because most of the people that got MDR, they just loose their ment, that interfered with treatment. During participant observation,
minds. While I am talking with you, I am not talking the way we talk. TB patients did not always take all their pills because lack of food
They just talk nonsense. So they've got … That TB. So they are dan- worsened side-effects (Video 7).
gerous (Tamtam, DS-TB-patient). Supplementary video related to this article can be found at http://
In this study, every MDR-TB patient described the daily MDR-TB dx.doi.org/10.1016/j.socscimed.2018.05.034.

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A.L. Cremers et al. Social Science & Medicine 209 (2018) 145–151

No, I can't take those pills. The food is finished, Lianne. I'm going to Supplementary video related to this article can be found at http://
throw it in the bin. Now. I don't want, I am not going to take these. dx.doi.org/10.1016/j.socscimed.2018.05.034.
These pills make me mad. I'm going to drink this, only this (Chumisa, But the way she [the nurse] was treating me, I didn't like it. She puts
MDR-TB patient). the injection in that lump. But she can see, that lump is bleeding. But
she carries on to put that injection in that lump. So that is why I didn't
3.5. Support and stigma want to go there, to the clinic of Town 2. I hate them. I don't want to go
there. I talk the truth, now I hate the clinic. […] I feel like I am not a
Khayelitsha is divided into different quarters that are characterised person. The nurse shouting at me like that (Nokuzola, MDR-TB-patient).
by close communities and social structures of support. During FGDs, Some patients described feelings of frustration and dehumanization
interviews, and participant observation, respondents often referred to because of nurses' treatment. Several health workers explained feeling
‘the spirit of ubuntu’ to explain how neighbours took care and cooked for threatened by TB patients who complained about treatment as this
each other, and accompanied patients to the hospital (Video 8). potentially signalled patients being non-compliant, increasing the risk
Supplementary video related to this article can be found at http:// of infection. Clinics were often understaffed, resulting in excessive
dx.doi.org/10.1016/j.socscimed.2018.05.034. workloads, long waiting queues, and at times, rude attitudes of both
Some people explained DS-TB-patients were no longer stigmatised, health workers and patients towards each other.
e.g. kicked out of the house, beaten up, or socially isolated. During this Various health workers and researchers had a pessimistic attitude
study, these examples of stigmatisation were indeed not observed or about the functioning of the Khayelitsha programme, a frustration
heard of, but some respondents (themselves sometimes former TB pa- amplified by huge health inequalities within South Africa. They often
tients) did talk in a stigmatising way about TB patients (Video 9). blamed mismanaged TB interventions, limited political will and re-
Supplementary video related to this article can be found at http:// sources, and patients' irresponsible behaviour for the expanding
dx.doi.org/10.1016/j.socscimed.2018.05.034. number of TB patients.
They [TB patients] shrink. Because they don't want to eat, they don't
want to do anything, they don't want to talk. They are smelly. If like 4. Discussion
now you smell, I smell poopoo in this house, somebody has got a TB.
[…] That one is not going to survive (Tamtam, DS-TB-patient). Our resilience-based approach may provide a deeper understanding
Tamtam made a distinction between herself and ‘those patients who of how TB patients in Khayelitsha negotiate adversities while dealing
carried a lot of diseases’. TB patients were often suspected of carrying a with TB and TB care. Most of these adversities - poverty, hunger, stigma
wide range of diseases, including HIV. Many respondents said that only - were related to tenacious social, political, and economic inequalities.
HIV patients were stigmatised because it was ‘a personal problem’, re- However, we want to complement our investigation of vulnerability
ferring to behaviour such as sleeping around. On the contrary, TB could and victimization with a perspective that better integrates patients'
be obtained by anyone through the air. However, various respondents strengths and competencies. We focus here on patients' manifestations
explained that social consequences for HIV and TB were often inter- of resilience that may influence their wellbeing and more indirectly, the
mingled (Video 10). outcomes of the Khayelitsha programme. We argue that TB patients in
Supplementary video related to this article can be found at http:// this study were strong-willed, proud, and showed substantial agency in
dx.doi.org/10.1016/j.socscimed.2018.05.034. making informed decisions despite difficult circumstances. Below, we
They [TB-patients] are not open. They don't want to share. Anything will explain how decision-making was shaped by the contingencies of
with TB, it's just that they don't accept the TB. […] I think they're respondents' daily experiences and discuss under what conditions we
having a problem with thinking that TB is only for HIV people. But a might consider these as manifestations of resilience.
person that has a normal TB with no HIV, a normal person, just gets TB All patients included in this study were living in dire poverty.
with no HIV. She doesn't accept that. It means you are a whore. That's Numerous authors have argued that poverty and malnourishment are
what they say (Vuyelwa, CCW). two principle obstacles to TB care (Ndegwa et al., 2007; Waaler, 2002).
Respondents explained there is an assumption that only HIV pa- The side effects of treatments for both DS-TB and DR-TB patients,
tients are susceptible for TB. Various respondents described that TB was worsened by a lack of food, and their negative impact on treatment
considered by many a disgrace and some also explained that one's po- adherence have been reported (Chalco et al., 2006; Törün et al., 2005;
sition in society was in danger of being degraded (Video 11). Yee et al., 2003). Nevertheless, many of our patients stated that they
Supplementary video related to this article can be found at http:// were not being heard about this aspect of TB treatment. While our
dx.doi.org/10.1016/j.socscimed.2018.05.034. patients were generally well-informed about TB and the importance of
Khulish described how many people already have a vulnerable po- treatment adherence, issues such as medications' side-effects sometimes
sition and are not able to cope with unexpected events, such as TB. forced them to deviate from treatment guidelines, especially when food
One respondent had obtained TB on the mountain, referring to the was scarce. At times, some patients decided to pause or stop treatment
site of his initiation ritual into manhood. For him, and for men in in order to avoid becoming psychotic. In these moments, patients' re-
general, TB was additionally complicated and shameful as men are silience manifested as protecting their psychological health. While this
expected to be strong and healthy. Many respondents stated men only enabled them to live a more dignified life in the short run, they worried
seek care when they are bed-ridden. Various respondents explained that TB might kill them in the long term. In this context, patients
their concern for a (male) coughing family member who refused to seek weighed alternatives. However, this decision-making did not necessa-
care. rily translate into long-term health benefits. This resonates with the
Some health workers and patients labelled DR-TB patients as irre- idea that individuals may be resilient in one domain or phase of their
sponsible and a danger to their social environment. Sensitization pro- lives, but not in others (Southwick et al., 2015; Vanderbilt-Adriance and
grammes warned against incorrect drug intake as this might lead to Shaw, 2008). Resilience may manifest variably in different contexts and
drug resistance; yet various respondents remained unaware of direct additionally, these different manifestations of resilience potentially
transmission of DR-TB. DR-TB-patients said they additionally had dif- interact with each other.
ficulties with wearing a mask as it signalled TB and sometimes triggered Many patients used alcohol, countering treatment guidelines and
fear and rudeness of bystanders. The danger of MDR-TB-infection was despite knowing its disastrous effects on health and potential drug re-
often equalled with Ebola. sistance. Nevertheless, drinking alcohol appeared to be an important
Another problem mentioned by participants was stigmatizing atti- coping strategy to promote a sense of well-being. At the same time,
tudes of nurses at the clinic (Video 12). however, this coping strategy often caused delay or interruption of TB

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care. TB patients' alcohol use may be lowered by poverty alleviation from a resilience-building approach that considers pre-existing
and consequently improve TB outcomes, as a South African study il- strengths and vulnerabilities of TB patients and their communities.
lustrated (Louwagie et al., 2014). Interestingly, this study focused on Our visual ethnographic study allows for the sharing of knowledge
men, while our study showed that women also used alcohol. and interpretations that reside beyond medical and scientific rationales,
Since 1999, social grants have reduced poverty in South Africa offering alternative ways of understanding and explaining TB (Cremers
(Armstrong et al., 2008). Yet, as Merton already noted in 1936 (Merton, et al., 2016). A trailer of the longer ethnographic health film “TB in
1936), social interventions can exert both intended and unanticipated Town 2” can be found at: https://vimeo.com/244487053. The use of
consequences. TB social grants are supposed to financially support re- visual ethnography raises the question of what platforms can be given
cipients and improve their adherence to treatment. Those who complete to TB patients and what roles patients could play within the field of
TB treatment eventually lose access to such grants. Several patients, research, knowledge construction, and policy making. TB-related acti-
health workers, and pastors said that some patients prolonged access to vism in South Africa remains limited, with the exception of the TAC and
such a grant by avoiding or delaying getting cured, or by getting re- a few other small NGOs and networks (TAC, 2017). In considering
infected. Various TB patients did indeed become breadwinners thanks lessons learned from the fields of HIV (Epstein, 1995), Ebola
to their grant; their illness and lives at risk assured financial income for (Abramowitz et al., 2015), and Lyme disease (Zavestoski et al., 2004),
their family. Paradoxically, grants may feed into the poverty cycle we call for more research on how synergies can be created between
whereby patients continue to be ill or face recurrent TB, remain un- communities, researchers, and policy-makers and the role of visual
employed, and stay dependent on these external financial resources. ethnography herein.
The use of social grant resources to address socio-economic adversity
could be considered as enhancing economic resilience, while negatively 4.1. Limitations and strengths
impacting other domains of resilience, undermining health.
Some authors have argued that unconditional cash transfers to the Our study participants (N = 72) were recruited in one township
poor are the way forward (Ferguson, 2015). If most people in Khaye- characterized by high crime rates, social and racial tensions, intense
litsha would be able to receive money regardless of TB status, chal- levels of poverty and marginalization, and advanced TB programmes.
lenges with TB grants as described above may potentially be avoided. This may complicate translation to other settings in South Africa and
The discussion of social grants remains complex as questions arise beyond. However, this information sheds light on the vulnerabilities
around whether the structural aspects of this problem are properly and the capabilities within communities with high TB risk that may be
addressed, who would be responsible for such payments, and how this considered as exemplary in other settings. This study focused on adults
would be applied to an everyday context. Instead of grants for in- and included only one XDR-TB patient, consequently experiences of
dividual patients, governments could invest in the wider community children and XDR-TB patients remains unknown and future ethno-
(including patients who are no longer infectious) by creating jobs, graphic research is needed.
fostering education, and promoting rights in order to stimulate sus- The strengths of this ethnographic study include a critical inquiry
tainable economic development. Moreover, TB programmes could be into the functioning of the Khayelitsha programme and how this im-
mandated to pressure employers to provide fair compensation for em- pacts the lives of its patients. Our approach to forming long-term re-
ployees who develop active TB. lationships with respondents revealed the complexities of TB patients'
Narratives of patients deliberately pursuing TB grants may, how- experience with TB and care. The camera functioned as a catalyst as
ever, be fuelled by social processes of stigmatization. Some respondents respondents reacted positively and explained that they hoped their
described TB patients in a stigmatizing way and various patients struggles related to TB treatment would reach beyond this research.
(especially men) mentioned that they felt ashamed of having TB, often Patients' narratives captured on film may provide insights on the sub-
hindering TB disclosure and seeking of health care. TB was linked by jectivities attributed to TB. Finally, the need to broaden the impact of
many to HIV, leading to a double stigma (Cremers et al., 2015; Daftary, ethnographic health research on policy agendas and public discourse
2012). DR-TB patients faced another dimension of stigma, as they were (Panter-Brick and Eggerman, 2017; Hansen et al., 2013) may be ad-
often considered dangerous and irresponsible (assuming they had pre- dressed by the use of video recordings.
viously been non-adherent with treatment). This discourse of respon-
sibility is strengthened by the Khayelitsha programme that allows ‘re-
5. Conclusion
sponsible patients’ home-based care and warns that non-adherence to
treatment leads to drug resistance. South Africa is one of the few
Our ethnographic study assessed patients' experiences with TB and
countries where second- and third-line TB-drugs are available, ex-
TB care using a resilience-based approach. The findings may enhance
plaining the lack of studies reporting on DR-TB-related stigma.
understanding of why the Khayelitsha programme is still struggling to
The persistence of strong community ties may heighten vulner-
quell the epidemic. We aimed to identify and understand the complex
ability to TB stigma. At the same time, this kind of intense social in-
and varying manifestations of resilience in contexts profoundly shaped
terconnection can also serve as a critical resource for enhancing resi-
by economic and health inequalities. TB programmes can benefit from
lience among people living in Khayelitsha and a source of support for
this approach by understanding and drawing on pre-existing strengths
their TB treatment. Close connections between people of a community
and vulnerabilities among TB patients and their communities. By using
may play an important role in interventions to sustain well-being and
visual ethnography and short videos, we aimed to present patient
health of patients (Hawe and Shiell, 2000; Seeman, 1996).
perspectives and hope to contribute to improving TB programmes by
In sum, TB patients' responses to the Khayelitsha programme must
creating novel synergies between patients, researchers, and policy-
be examined in relation to the manifold adversities they encounter and
makers.
negotiate in their daily lives. Within this context, resilience among
people with TB may differ from time to time and across various do-
mains of life. Moreover, these various manifestations of resilience may Conflicts of interest
interact with each other. Resilience in one life domain may, para-
doxically, lead to vulnerability in others. The Khayelitsha programme None.
may currently have limited impact on patients' situations in the face of
dire circumstances. However, a resilience-focused approach could make Funding
a unique contribution to this effort by identifying the complex and
varying ways resilience manifests itself. TB programmes would benefit No specific funding was received for this project.

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