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Stigma relating to tuberculosis infection prevention and control implementation in rural health facilities in South Africa — a qualitative study outlining opportunities for mitigation

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Background Tuberculosis (TB) is a stigmatised disease with intersectional associations with poverty, HIV, transmission risk and mortality. The use of visible TB infection prevention and control (IPC) measures, such as masks or isolation, can contribute to stigma. Methods To explore stigma in this condition, we conducted in-depth individual interviews with 18 health workers and 15 patients in the rural Eastern Cape of South Africa using a semi-structured interview guide and narrative approach. We used reflexive thematic analysis guided by line-by-line coding. We then interpreted these key findings using Link and Phelan’s theoretical model of stigma, related this to stigma mitigation recommendations from participants and identified levels of intervention with the Health Stigma and Discrimination Framework. Results Participants shared narratives of how TB IPC measures can contribute to stigma, with some describing feeling ‘less than human’. We found TB IPC measures sometimes exacerbated stigma, for example through introducing physical isolation that became prolonged or through a mask marking the person out as being ill with TB. In this context, stigma emerged from the narrow definition of what mask-wearing symbolises, in contrast with broader uses of masks as a preventative measure. Patient and health workers had contrasting perspectives on the implications of TB IPC-related stigma, with patients focussing on communal benefit, while health workers focussed on the negative impact on the health worker-patient relationship. Participant recommendations to mitigate TB IPC-related stigma included comprehensive information on TB IPC measures, respectful communication between health workers and patients, shifting the focus of TB IPC messages to communal safety (which could draw on ubuntu, a humanist framework) and using universal IPC precautions instead of measures targeted at someone with infectious TB. Conclusions Health facilities may unwittingly perpetuate stigma through TB IPC implementation, but they also have the potential to reduce it. Evoking ‘ubuntu’ as an African humanist conceptual framework could provide a novel perspective to guide future TB IPC stigma mitigation interventions, including policy changes to universal IPC precautions. Supplementary Information The online version contains supplementary material available at 10.1186/s44263-024-00097-8.
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van derWesthuizenetal.
BMC Global and Public Health (2024) 2:66
https://doi.org/10.1186/s44263-024-00097-8
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BMC Global and
Public Health
Stigma relating totuberculosis infection
prevention andcontrol implementation inrural
health facilities inSouth Africa — aqualitative
study outlining opportunities formitigation
Helene-Mari van der Westhuizen2*, Rodney Ehrlich2, Ncumisa Somdyala3, Trisha Greenhalgh1,
Sarah Tonkin-Crine1 and Chris C. Butler1
Abstract
Background Tuberculosis (TB) is a stigmatised disease with intersectional associations with poverty, HIV, transmission
risk and mortality. The use of visible TB infection prevention and control (IPC) measures, such as masks or isolation, can
contribute to stigma.
Methods To explore stigma in this condition, we conducted in-depth individual interviews with 18 health work-
ers and 15 patients in the rural Eastern Cape of South Africa using a semi-structured interview guide and narrative
approach. We used reflexive thematic analysis guided by line-by-line coding. We then interpreted these key findings
using Link and Phelan’s theoretical model of stigma, related this to stigma mitigation recommendations from partici-
pants and identified levels of intervention with the Health Stigma and Discrimination Framework.
Results Participants shared narratives of how TB IPC measures can contribute to stigma, with some describing feeling
‘less than human’. We found TB IPC measures sometimes exacerbated stigma, for example through introducing physi-
cal isolation that became prolonged or through a mask marking the person out as being ill with TB. In this context,
stigma emerged from the narrow definition of what mask-wearing symbolises, in contrast with broader uses of masks
as a preventative measure. Patient and health workers had contrasting perspectives on the implications of TB IPC-
related stigma, with patients focussing on communal benefit, while health workers focussed on the negative impact
on the health worker-patient relationship. Participant recommendations to mitigate TB IPC-related stigma included
comprehensive information on TB IPC measures, respectful communication between health workers and patients,
shifting the focus of TB IPC messages to communal safety (which could draw on ubuntu, a humanist framework)
and using universal IPC precautions instead of measures targeted at someone with infectious TB.
Conclusions Health facilities may unwittingly perpetuate stigma through TB IPC implementation, but they also have
the potential to reduce it. Evoking ubuntu’ as an African humanist conceptual framework could provide a novel per-
spective to guide future TB IPC stigma mitigation interventions, including policy changes to universal IPC precautions.
Keywords Tuberculosis, Stigma, Infection prevention and control, Intervention, Ubuntu
*Correspondence:
Helene-Mari van der Westhuizen
helene.vdw@phc.ox.ac.uk
Full list of author information is available at the end of the article
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van derWesthuizenetal. BMC Global and Public Health (2024) 2:66
Background
An estimated global total of 10.6 million people devel-
oped tuberculosis (TB) disease in 2021 [1]. Yet despite
being common, TB remains a stigmatised disease with
intersectional associations with poverty, social margin-
alisation, HIV, transmission risk and the risk of dying
due to the disease [2]. Understanding TB stigma and
developing mitigation strategies are important compo-
nents of improving TB prevention and care.
Infection prevention and control (IPC) policies
may contribute to actions that could be experienced
as stigmatising, for example by isolating those who
are believed to be infectious. Both the 1999 and 2019
WHO guidelines on TB IPC caution that stigma is an
important implementation consideration, specially also
mentioning its relevance to mask wearing [3, 4]. View-
ing this through the Health Stigma and Discrimination
Framework, this places a focus on healthcare facilities
as important spaces where patients may have TB stigma
experiences and where there may be observable stigma
practices [5].
In a study based in Ghana, a number of examples of
discrimination relating to TB IPC in healthcare facili-
ties were identified [6]. Junior members of staff were del-
egated the care of TB patients, health workers avoided
or shortened interactions with TB patients and health
workers treated TB patients with contempt by shouting
at them. Fear of becoming infected with TB was identi-
fied as one of the drivers of the stigma [6]. Pervasive TB
stigma can lead to outcomes including being a barrier to
seeking a TB diagnosis, hinder commencement of treat-
ment and long-term poorer health outcomes [7].
We use Goffman’s seminal conceptualisation of stigma
as a physical marking that, within the context of social
relations and interaction, reveal the tainted moral sta-
tus associated with the person [8]. Stigma can be fur-
ther explored through considering the following: enacted
stigma which is overt discrimination (for example some-
one with TB being dismissed from their job) and felt
stigma, the sense of shame and a fear of encountering
enacted stigma (for example someone with TB avoid-
ing contact with other people as they fear they may react
with disgust) [9]. is can be further differentiated as
anticipated stigma (which may be perceived but may or
may not become enacted stigma) and internalised stigma
(feeling shame or blame for having TB disease) [911].
Despite receiving prominence in the policy and academic
literature, there has been little progress in finding ways in
which TB IPC-related stigma can be mitigated [6, 10, 11].
Instead, avoiding the stigma related to mask wearing by
people with TB is sometimes cited as a reason for aban-
doning the use of masks in health facilities [12]. is con-
tributes to the ongoing spread of TB to health workers,
patients and visitors — affecting those with underlying
health conditions more severely.
When looking at the literature beyond application to
TB on the links between infection control measures and
stigma, some possible mitigation strategies are identified.
In a literature review on the stigmatisation of source iso-
lation (people who have a transmittable infection), Gam-
mon and colleagues found that isolation can be a barrier
to contact time with health workers, and that protective
equipment can impair communication [13]. ey recom-
mended additional training for health workers to miti-
gate the social and psychological impacts of isolation on
patients through increasing social interaction between
health workers and patients.
During the COVID-19 pandemic, in some settings,
people with Asian heritage wearing masks were stigma-
tised and treated as carriers of disease [14, 15]. A multi-
country meta-ethnography by Tsang and colleagues
explored how positive social meanings attached to mask
wearing contributed to higher uptake of masks during
respiratory epidemics and sustained use outside of epi-
demic contexts, predominantly in countries in Asia [16].
ey observed that positive social identities support the
use of mask wearing including associations with soli-
darity, civic responsibility and scientific modernity. is
shifted the meaning of mask wearing from being exclu-
sively for the prevention of a specific disease (such as
SARS) to that of offering broader protection against a
range of respiratory illnesses, pollution and radiation [17,
18]. is contrasts with the requirement in health facili-
ties that patients with TB wear masks to protect others
but no requirement that people who do not have TB wear
masks as protective to the wearer. It is likely that in some
settings, due to widespread use of masks for COVID-19,
mask wearing may have become less stigmatised for TB
as well [19, 20].
Nyblade and colleagues suggested an array of interven-
tion strategies to address stigma in health facilities. is
included the following: providing information about the
stigmatised condition, building skills through interac-
tive learning activities and promoting empowerment, for
example by offering counselling for the stigmatised group
[7]. Nyblade and colleagues also recommended increas-
ing contact with people who form part of the stigmatised
group (for example through rotations in clinical roles for
health workers or exposing staff to individuals with the
stigmatised condition in non-clinic interactions) and
using structural approaches to address stigma through
reviewing policies and service integration [7].
Stangl and colleagues, through their Health, Stigma
and Discrimination Framework, call on researchers
who develop stigma interventions to ‘move away from
psychological models that see stigma as a thing which
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van derWesthuizenetal. BMC Global and Public Health (2024) 2:66
individuals impose on others, and instead emphasize, the
broader social, cultural, political and economic forces
that structure stigma’ [5]. ey present multiple levels
that stigma interventions could focus on, highlighting
that a combination of levels should be preferred.
In this study, we aimed to explore (a) the underlying
contributors to why TB IPC measures in health facilities
in the study context were perceived as stigmatising and
(b) how the perspectives of health workers and patients
differ regarding the implications of TB IPC associated
stigma. (c) We then present participant recommenda-
tions for how the stigma associated with TB IPC could be
mitigated or overcome.
Methods
Study setting
is qualitative research study was conducted in a rural
district of the Eastern Cape of South Africa, the province
with the highest TB incidence rate in the country at 692
per 100,000 people [21]. e district has an HIV preva-
lence of 15.3%, with people with HIV disproportionately
affected by transmission of TB in health facilities [19,
22]. e district’s high tuberculosis burden is rooted in
the contributions of migrant mining labour, racially dis-
criminatory tuberculosis policies during the apartheid
government, and a focus on TB treatment as the main
intervention, to the neglect of improving social and eco-
nomic conditions [20].
Data collection
Data sources include in-depth individual interviews with
18 health workers and 15 patients conducted between
August 2019 and January 2020 which lasted between 30
and 90 min each. (see Table1) We recruited participants
at one district hospital and four primary care facilities.
Sampling was purposive and was from waiting rooms
in the health facilities and at staff meetings. We specifi-
cally looked to include health workers and patients with
key perspectives such as health workers who previously
developed occupational TB, patients who have TB cur-
rently or had TB before and patients who had had expe-
riences of using a mask while visiting a health facility. It
is important to note that some patients with experiences
of TB were not asked to wear a mask (n = 3), and some
patient participants who have not had TB also had expe-
riences of being asked to wear a mask when visiting a
health facility (n = 2); this was while being investigated
for symptoms of TB. During this study period, the most
commonly used type of mask by patients was surgical
masks, while health workers used surgical masks or par-
ticulate filter respirators. Our sample size was guided by
data saturation, which relates to the degree to which new
data repeat what was expressed in previous data [23].
We used a semi-structured interview guide with a nar-
rative approach, which was refined based on pilot testing
(see additional file1 for our interview guide.) Interviews
were conducted in isiXhosa or English (based on the
participant’s preference), audio-recorded, transcribed,
translated into English where applicable and checked
for accuracy by the research team. Interviews were con-
ducted at the preferred site of the participants, which
included health facilities, the research centre and homes.
Data analysis
Initial analysis was inductive and grouped according to
patient and health worker interviews. We were guided
by Braun and Clarke’s reflexive thematic analysis, using
line-by-line coding led by HvdW with NVivo software
[24] (see additional file2 for our coding tree). We then
Table 1 Participant characteristics
Health workers Patients
Age
Median 33 34
Range 22–56 18–66
Sex
Male 6 7
Female 12 8
Health worker profession
Doctor 5 -
Nurse 10 -
Allied health professional 2 -
Support staff (translator) 1 -
Health facility
District hospital 11 -
Primary care clinic 7 -
Years of work experience
0–10 12 -
10 + 6 -
TB disease
Drug-sensitive TB 2 9
Drug-resistant TB 0 1
Previously asked to wear a mask when visiting a health facility as
part of TB IPC
Yes - 9 (7 were
patients
with expe-
rience
of TB)
No - 6 (3 were
patients
with expe-
rience
of TB)
Total participants 18 15
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van derWesthuizenetal. BMC Global and Public Health (2024) 2:66
interpreted the thematic areas relating to TB IPC and
stigma in health facilities using Link and Phelan’s theo-
retical model of stigma to identify the contributions
of different stigma components and how this relates
to mitigation recommendations and identify levels of
intervention with the Health Stigma and Discrimination
Framework [5, 25]. is study formed part of a broader
programme of doctoral research which also includes
organisation practices influencing TB IPC implementa-
tion and TB IPC in community settings.
Link and Phelan’s theoretical model of stigma draws on
disability and sociological studies and has five co-occur-
ring components [25]. Two stigma sub-concepts relate
to the material properties of a mask and physical impli-
cations of TB IPC measures (as visible label of having
TB and emphasising separation between ‘us and them’).
Two stigma subcomponents relate to TB IPC measures
reflecting the stigma associated with having TB more
broadly (loss of status and discrimination and stereotyp-
ing of people with TB), and the final component con-
siders the influence of power which can relate to stigma
practices [26]. Link and Phelan argue for including a
focus on how power is asserted through existing socio-
economic inequalities and through differences in class,
race, religion or gender. In relation to TB, power can also
be asserted through institutions, policies, TB IPC meas-
ures, diagnostics and treatment delivery [27]. Another
example where power could be expressed is in the doc-
tor-patient relationship, where Shei highlighted that this
relational power depends on trust — which the patient
trusts that the health worker will use the power asym-
metry in an ethical way and make constructive changes
in the lives of their patients while treating patients as
rational, intelligent, fellow human beings [28].
Research team
e research team was led by HvdW, a clinician-
researcher who had previously worked in this setting and
who led the health worker interviews. A research assis-
tant (N. S.) who lives in the area and has experiences of
receiving care at the health facilities supported recruit-
ment. She received training in qualitative research meth-
ods and led the isiXhosa interviews (with HvdW taking
notes for most of these interviews). We kept detailed
journals and had regular debriefing conversations about
how our presence including gender (both being female)
might influence the responses from participants. We
piloted different approaches to conducting the inter-
views (for example where HvdW would not be present)
and found that participants did not focus attention on
her as note-taker. Co-investigators provided expertise
in occupational health (RE), primary care (CB and TG),
behavioural science (STC) and social science (TG) and
supported critical discussions of the data collection pro-
cesses and interpretation.
e reporting of this research has been done according
to the COREQ checklist [29] (see additional file3).
Results
We start by describing the stigma experiences and prac-
tices that our participants linked to TB IPC measures in
this context. We then contrast health worker and patient
perspectives on what implications these stigma experi-
ences have for TB IPC implementation. Finally, we pre-
sent patient and health worker recommendations on how
TB IPC stigma could be mitigated.
Stigma experiences andpractices relating toTB IPC
inhealth facilities
Participants felt that mask wearing for source control
(protecting others from becoming infected) was a prac-
tice that could often lead to someone with TB experienc-
ing stigma.
When you look at a person [wearing a mask] you
think to yourself that maybe this one has a huge ill-
ness which is bigger than mine. Even though a per-
son doesn’t eventually say anything, the eye speaks,
to see how people see you. – participant 32, male
MDR-TB patient, previously asked to wear a mask.
is description ‘the eye speaks’ shows how much of
this stigma is based on the perceptions of others and how
it could be communicated through a glance in a facil-
ity’s waiting room. It is an intersection between felt and
enacted stigma — the person wearing a mask may antici-
pate and interpret certain body language from people in
the waiting room as stigmatising without this being the
intention, but the small gestures could also communicate
a message that becomes enacted stigma. One participant
described how she unobtrusively tried to cover her baby’s
head with a blanket to protect them from TB when they
saw someone who was wearing a mask in a waiting room.
Two other participants described trying to move away
from a masked person, one saying she will do it in a way
not to ‘offend the person’ which we consider examples of
enacted stigma.
is shows how in our study setting a mask was seen as
a label of TB and by some as a label of MDR-TB, which
through its shared symbolic meaning led to fear of infec-
tion being a driver of stigma:
[Should I be asked to wear a mask] means that I am
infected—I have TB then.—Participant 8, female
patient, no previous TB, not asked to wear a mask.
Yet whether a mask was a valid label for TB was ques-
tioned by some health workers, as some of the health
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van derWesthuizenetal. BMC Global and Public Health (2024) 2:66
facilities included in the study would provide masks for
patients with respiratory symptoms while their TB inves-
tigations were pending. In our sample, there were also
some patients who had TB who were not asked to wear
a mask (see Table1) or patients with MDR-TB who were
expected to wear masks irrespective of whether they still
posed an infection risk to others.
Isolation was also described as a practice that could
lead to experiences of stigma. Patients felt this was both
a physical separation but also communicated a reduction
in their value, when they were asked to join a different
group:
What made it hurtful is that I was taken away from
other people and be placed alone there. Maybe I was
placed with people who had this thing on [wearing a
mask]. … I thought I should persevere. – participant
15, male previous TB patient, asked to wear a mask.
I did not get offended. Because I know the TB dis-
ease is contagious. It is a must that you agree when
you are put aside because you will infect a lot of peo-
ple. – participant 5. female patient previous TB, not
asked to wear mask.
e emphasis that this participant places on communal
safety is further explored in the “Results” section of this
manuscript.
While improving natural ventilation was considered
the least stigmatising TB IPC measure, some participants
still felt that it could communicate a message of careless-
ness on the part of health workers:
[ere are people] hurt by that. “ey open [win-
dows], we are cold, and they do not care about us”,
they would say. I would say “It is so that the disease
passes and gets out through that window and door
because it will infect you if these doors and windows
are closed, you will not be safe”.—participant 25,
female patient, twice had previous TB, not asked to
wear mask.
Some participants felt the stigma related to infection
control measures should be viewed more widely, beyond
the experience linked with infection control practices, to
the broader experience of being a person who is ill. TB
IPC is a painful moment, often at the beginning of a new
illness experience, but also symbolises a broader experi-
ence of now having a different identity.
I was afraid of people in that moment they were
giving the mask to me. I thought to myself that
it means my illness is wrong. [But] my illness
shouldn’t affect other people, I thought I should
endure the mask. What was making me feel
embarrassed was continually coming to the hos-
pital. Everyone seeing me going from the hospital
carrying the pills. at causes so much embarrass-
ment for me. But then I would think that there is
nothing they [the people looking strangely at me]
are going to do for me, my health is here [at the
hospital].- participant 15, male patient, previous
TB, asked to wear a mask.
is participant links his experience of receiving a
mask to the shame of being seen to visit the health facil-
ity or carrying tablets — which is broader than being
ashamed to have TB. He felt ashamed to be an ill person,
because in this context for his age group and gender it
has the intersectional stigma of being connotated to hav-
ing HIV.
Patients andhealth workers think dierently
abouttheimplications ofTB IPC‑associated stigma
forhealth facilities
While in our dataset health workers and patients broadly
agreed that TB IPC measures in health facilities can be
stigmatising to patients, they had contrasting perspec-
tives on the implications. In facilities where masks and
respirators were commonly used, health workers per-
ceived patients to oppose TB IPC measures, but that they
‘endured’ it as part of receiving care. It was interesting
that none of the health workers we interviewed consid-
ered patients to value TB IPC for communal safety. In
facilities where masks and respirators were not com-
monly used, health workers said making a patient feel
‘dehumanised’ through TB IPC measures contradicted
the underlying values of empathy, respect and estab-
lishing a therapeutic relationship. One health worker
described disregarding the use of respirators to show
they care for patients above their own needs:
Patient care and outcome at the end of the day
is more important than PPE. – participant 29.
Mamele hospital, female doctor.
Health workers described being concerned that TB
stigma would deter patients from coming for care at the
facility in the future and would also cause patients who
wear masks in facilities to be stigmatised in the commu-
nity. In a different clinic, a health worker wearing a res-
pirator as personal protective equipment was seen to be
stigmatising to patients:
e [patient] asked me, "Sister, why are you all wear-
ing a mask and we’re not wearing them? Sister, are
we disgusting you?” ey felt like they were dirty. So
[we] stopped wearing them. – participant 6, Aphiwe
clinic, female nurse.
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van derWesthuizenetal. BMC Global and Public Health (2024) 2:66
Yet in contrast with these health worker perceptions
and despite their own strongly felt stigma, patients did
not perceive stigma as a reason to discontinue mask
wearing, instead of focussing on the protection offered
by masks, emphasising that having TB is transient, and
that the health of health workers is important. is was
similar for patients who were asked to move to an isola-
tion area — they mentioned trusting the health facility to
make a recommendation in the communal best interest.
e overwhelming majority of patient participants
described the use of masks as a way to protect other peo-
ple but also the wearer. One participant who had under-
gone TB diagnostic tests multiple times saw wearing a
mask as a process that she could initiate when arriving at
a facility and did not view it to be stigmatising:
I would wear it without any problem. If I have a
fever perhaps, when I walk in, let’s say I am coughing,
I ask for it as I get out of the nursing area, because
I don’t know what I have. I will know only when
my results are back. I have no problem [wearing a
mask]. – participant 14, female patient, no previous
TB, asked to wear a mask.
ese findings contrasted with health worker views
that patients did not understand why masks were being
used and who simply used masks when they were told to
do so. is contrast is interesting, because many of the
health workers and patients form part of the same com-
munity and share a similar cultural background. is sug-
gests that there may be additional underlying differences
in the way that health workers and patients conceptualise
mask wearing. For example, one participant articulated
both the benefit and discomfort:
[When I was asked to wear a mask] there was no
problem because I know that I have a certain sick-
ness so I should not infect the next person. When I
am to speak to another person I have to wear it. I
noticed that they were looking at me. It was their
first time to see what I was wearing. I asked myself
whether these people looked at me for what reason?
I was given a mask and they were not given one, so I
did feel like my heart was hurting, but a little. Not
much. – Participant 21, male patient, currently has
TB, asked to wear a mask.
While some health workers focussed on their duty to
care for an individual patient, the patient participants
emphasised collectivism and the importance of commu-
nal safety. Health workers viewed TB IPC as interfering
with their work, instead of being part of their work.
On a descriptive level, these findings indicate a mis-
match between what health workers perceive patients
to feel and what patients described in the interviews. Yet
to explore and understand stigma, it is also important to
consider how power is exerted and how this may intersect
with trust. Examples of power that we specifically looked
for in our data set was the asymmetrical power relation-
ship between health worker and patient (which relies on
the health worker’s expertise to provide the care and ser-
vices patient needs), through the power that medicine
holds as institution (with medical jargon and training) or
by looking at the contextual power of an organisation (a
clinic in a rural area being the only facility that provides
care). e most pertinent example was during our inter-
views, when asked for recommendations that could be pre-
sented to health workers, some patients described being
unwilling to engage with health workers on TB IPC. ey
described this as being willing to ‘submit’ to the treatment
they receive and suggested that it would be a sign of not
trusting health workers’ expertise to provide their opinion.
Some of the health workers also mentioned that they
felt the influence of race and educational privilege in this
rural context on how willing patients are to communicate
about TB IPC:
I’m the white doctor. I never get opposition. I never get
resistance. I never get people that say "I refused. I’m not
going to wear it [the mask]". I don’t get people that chal-
lenge me. I don’t get people that question me. Perhaps
they want say something but they’re just too scared to
say it. – participant 4, Mamele Hospital, female doctor.
However, many of the health workers come from the
same community as the patients. One nurse recom-
mended that through having more discussions about TB
and TB IPC, it would be possible to reach a shared under-
standing and increase the motivation of health workers
to make preventative efforts:
We can move and we can educate—we are from this
communities—we live with these people. And we
have information about TB, but [what is lacking is]
a will. And to talk with them and make sense with
them so that they can understand. Mostly people
understand but they need motivation to start doing
something to prevent TB. – participant 7, Aphiwe
Clinic, male nurse, manager.
Encouraging communication between health workers
and patients on TB IPC preferences may be one way to
engage with these power dynamics and ensure both per-
spectives are heard.
Four recommendations frompatients andhealth workers
onmitigating thestigma associated withTB IPC inhealth
facilities
We asked participants how the stigma associated
with TB IPC in health facilities could be mitigated or
Page 7 of 13
van derWesthuizenetal. BMC Global and Public Health (2024) 2:66
overcome. We first present an overview of how par-
ticipant recommendations link with the multiple levels
of possible stigma interventions, based on the Health
Stigma and Discrimination Framework in Fig. 1. We
then elaborate on these recommendations in Table 2
and the text by providing illustrative quotes and identi-
fying the stigma subcomponent that the recommenda-
tion focusses on, through drawing on Link and Phelan.
An underlying principle of the recommendations pre-
sented in Table 2 is that destigmatising TB IPC does
not involve omitting the preventative measures but
rather paying closer attention to the way TB IPC meas-
ures are being communicated and used.
Several participants conceptualised this by asking to
be spoken to ‘in a human way’. is contrasts with ear-
lier descriptions of having TB, experiencing stigma and
feeling like they were less than human.
What I would advise [health workers] is that you
must be polite to people, because a person is a
person through other people [a Nguni proverb,
often used to describe the meaning of ‘ubuntu’]. So,
maybe they are a nurse, but they work with people,
if the people aren’t there, there is nothing they will
work with, so they must treat them well. – partici-
pant 20, male TB patient, previously asked to wear
a mask.
is participant suggests looking at ‘ubuntu’ as a way
to understand how TB IPC measures should be adapted
to emphasise interconnectedness and a shared sense of
humanity, which contrasts with the separation, discrimina-
tion and disempowerment that Link and Phelan described
as subcomponents of stigma (discussed in Table 2). In
addition to this, it also introduces the community as point
of focus, where people’s wellbeing is interdependent and
challenges the idea that the health facility is separate and
should have interventions only targeted towards it.
Several participants pointed out that visible infection
control measures, due to its symbolic meaning, disclose
to others that a person has TB. One approach already
outlined above would be to change the symbolic meaning
of these measures. A different approach would be to cre-
ate an environment where people are comfortable to dis-
close that they have TB, which would in turn reduce the
stigma associated with TB, and visible TB IPC measures.
TB doesn’t only attack the poor [people]. [When I
tell this to patients] they say, "No, sister. No." I say,
"Yes, I’m the one who has [had] TB before, but now
my TB is cured. I took treatment regularly and I’m
well." at’s why I counsel them because I just took
that sickness from her to me. Patients must know
that this is everyone’s disease. – participant 13,
Mamele Hospital, female nurse, previous TB.
Fig. 1 Summary of participant recommendations for multi-level, TB IPC stigma intervention targets
Page 8 of 13
van derWesthuizenetal. BMC Global and Public Health (2024) 2:66
Table 2 Patient and health worker recommendations for implementing TB IPC while mitigating TB stigma
Recommendation Illustrative quote Stigma subcomponent that is targeted
1. Provide detailed TB IPC information to patients
Provide detailed descriptions and explanations about why TB IPC
is important and how it works
‘The nurse should first explain because there are those who will
be offended. For example, it is raining, and it is cold and then
they suddenly open the windows. They should explain that “We
are opening the windows so that we do not infect one another
with TB. For us to be in optimal health, we must open these
windows, so that the air that we breathe will not remain
inside where we are, so that it will go away through the win-
dows.”’ – participant 11, Female patient, no previous TB,
not asked to wear a mask
‘You can’t just push the bed to that [High Risk Coughing] cubicle
[to isolate a TB patient]. They [the patient] might be a little bit
jittery about moving. You have to counsel them and explain
thoroughly. You introduce these patients[using their clan names]
to the ones that are already there in that cubicle. I would start
the conversation just to break the ice. Monitoring the situation
even in the upcoming days. When she’s laughing [with the other
patients in the new room] that makes me happy.’ – participant
22, Mamele hospital, male nurse
This patient participant gave a sample script of what level of detail
health workers should include when discussing improving ventila-
tion as TB IPC, whereas in our broader dataset others provided
similar recommendations for discussions on masks.
This focuses on the knowledge asymmetry between health
workers and patients that may mitigate experiences where health
workers exert their power based on expertise, without providing
context and detailed explanations. It also highlights the impor-
tance of respectful interactions
The nurse describes how placing someone in an isolation
ward should be done ‘in a dignified manner’ and how he looks
to facilitate conversation and relationships between patients
who are in the isolation cubicle together [in this facility, patients
with potentially infectious TB are admitted into the same room
that has multiple patient beds]. By emphasising that a patient’s
clan names (‘isiduko’) should be used when introducing them
to others in the room, it aims to counter the loss of status associ-
ated with having TB and being a patient, instead of evoking
the status that the person has in the community
2. Respectful communication
Pay attention to tone of voice, gestures and eye contact
when discussing TB IPC, especially when masks may obscure
parts of facial expression
‘I would advise them … [what you say] does not really matter it
is how you say it. You should … give them the reasons. – partici-
pant 10, male TB patient, previously asked to wear mask
‘I would like [my health worker] to be polite and humble,
and say, “Sorry my brother, here is a mask for [you], when you are
coughing you are going to infect other people. So, it’s for protec-
tion.” They must speak in a human way. There are some people
who are rough. When you are looking at them you wonder, [is]
this person disrespecting me and undermining me, maybe I’m
disgusting? You don’t feel well. When they are speaking politely,
and have a good expression on their face, you also feel comfort-
able.’ – participant 20, male TB patient, previously asked to wear
a mask
‘It’s not easy [when wearing a mask]because the [patients]
can’t see the real expression of your face. But at least your voice
might tell a different story. It’s very important that you are smil-
ing [while] wearing that mask. [He demonstrates by covering
mouth with hand.] “Molo gogo! [hallo granny, in a warm, friendly
voice]” [ The patient] will say this nurse is friendly, although she
cannot see his mouth. If you say “Gogo. Here’s your medication.
[Deep, rough voice] Then certainly she’ll understand, “Hey! This
is a lion!” So, she will be very scared of you. The nurse who listens
will be like a Father Christmas. Will you please pull that curtain
….” “Please bring me a bedpan. “I’m hungry.”’ – participant 22,
Mamele hospital, male nurse
The two patient participants described what tone of voice
and body language they would like health workers to use.
This recommendation focuses on health workers being aware
of their relational power through acknowledging the emotive
components of being ill and responding in an empathetic way.
The nurse explained how he tries to compensate for the compo-
nents of interpersonal communication that are lost through wear-
ing a mask by intentionally emphasising having a friendly tone
of voice, finding ways to express care and empathy despite physi-
cal barriers and infectious risk
It is also touches on loss of status as stigma subcomponent —
and that through being addressed in a respectful way acknowl-
edges that a person’s status has not changed because they
developed TB.
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van derWesthuizenetal. BMC Global and Public Health (2024) 2:66
Table 2 (continued)
Recommendation Illustrative quote Stigma subcomponent that is targeted
3. Reframe IPC to emphasise communal safety
Describe TB IPC as a way of creating a safer healthcare environ-
ment for patients and health workers
‘I am protecting [the health workers] and other people
so that [the TB] remains with me and not go to other people. I
would not get upset over something that is in my health—it will
end. It will get cured and I will be that person again.’ – partici-
pant 8, female patient, no previous TB, not previously asked
to wear a mask
[When I received a mask] I felt good … because it protects. It
protects—for you to be safe on your side.—participant 20, male
patient, current TB, asked to wear mask
‘They—my doctors or nurses—should always remain protected
from my disease.’ – participant 9, male patient, no previous TB,
asked to wear mask
These three patient participants emphasised the communal ben-
efit of mask wearing for health workers and other patients.
Through different framing, this attempts to introduce a new con-
notation to the label of wearing a mask — instead of responding
to a mask with the fear of being infected by that person, it could
be viewed as a protective, prosocial act.
It also introduces interdependence between these groups:
how communal safety depends on people with infectious TB
to wear masks, which in turn places a responsibility on people
who are being protected to avoid behaviour that may be stigma-
tising.
4. Promote universal airborne TB IPC precautions
Consider universal airborne precautions such as improved
ventilation in all clinical areas, routine use of outdoor waiting
rooms and mask use by everyone in the health facility instead
of precautions targeted at infectious patients
‘I think when we are standing in the queue, we should try
to protect everyone—including the nurses and doctors—eve-
ryone should wear a mask. We should all protect each other
inside the premises, so that their sickness doesn’t get to me
and mine doesn’t get to them. We don’t know who between us
is sick.’—participant 9, Male patient, no previous TB, previously
asked to wear a mask
‘[Describing an ideal TB isolation unit that does not stigmatise
patients.] Let’s not think of it as a TB ward, not an isolation ward
either. It’s a separation ward. A place where we can manage
people in single or double rooms, not just if they’ve got TB.
There are a whole lot of other diseases that we need to sepa-
rate out from the general patient population as well. And I
hope that TB will become a bit like that. That it will be some-
thing that we take seriously, but that we actually have good
facilities for managing so that they aren’t left in a storeroom
[where the current MDR TB ward is based] and that they aren’t
the pariah at the end of the passage. … I hope that with new
facilities and a broader mindset into what we’re doing, we
can do infection control in a more human way. That you feel
like you’re getting the same great care, whether it’s TB or heart
failure, and it doesn’t matter too much.’ – participant 12, Mamele
hospital, male doctor, manager
This patient participant suggested broadening the group of peo-
ple who are asked to wear a mask.
This recommendation focuses on changing the label of infectious-
ness that characterised previous use of masks for TB IPC, by add-
ing the use of masks as protection. This approach could create
a different symbolic meaning of airborne IPC measures that has a
broader application than for TB. It could also mitigate the experi-
ence of feeling discriminated against, because instead of targeted
measures, universal measures are used.
The recommendation from the health worker tries to mitigate
the separation that contributes to TB IPC stigma by blurring
the groups of ‘us’ (the people who are sick with TB who are
isolated) and ‘them’ (the people who need to be protected
against TB) by introducing separation (described as single or dou-
ble rooms) as universal measures for a range of different illnesses.
Page 10 of 13
van derWesthuizenetal. BMC Global and Public Health (2024) 2:66
is health worker voluntarily disclosed that she had
TB to patients to challenge the stereotype that only poor
people are affected by TB. is recommendation uses
her position of power relating to the status that a health
worker has in this context, based on their employment
and education, to reframe conceptions of who gets TB.
Several participants pointed out that encouraging peo-
ple with TB to voluntarily disclose their illness (instead of
involuntary disclosure through cues like masks) could be
uncomfortable and could lead to isolation or psychologi-
cal harm. However, they felt that on a community level, it
could contribute towards decreasing the stigma for other
people affected by TB.
I’ve thought about it in terms of normalising. I some-
times feel very uncomfortable [disclosing sensitive
information about myself and risk stigma], but I do
it anyway. Because I think that’s what has to be done.
So that’s why I say with TB [if I developed it], I would
be open about it. With HIV I hope I would, for that
exact same reason. – participant 29, hospital doctor.
ere is an implied responsibility for the ‘receiver’ to
respond tactfully and supportively, to meet the vulner-
ability of the person disclosing their illness. e benefit
may not necessarily be directly for the individual disclos-
ing their illness, although it might enable more support
from family and friends:
What kills us sick people is that a person overthinks
it, they think, “O God – maybe this person is dis-
gusted by what I am.”– participant 18, female previ-
ous TB patient, not previously asked to wear mask.
e largest benefit would be for people from the same
community affected by TB who may then face less stigma,
as the conceptualisation of who falls ill is broadened and
challenged. What is relevant to an infectious disease like
TB is that disclosure may also make colleagues or fam-
ily members aware of the potential risk of developing TB
after exposure. ‘Ubuntu’ brings an interconnected, com-
munity-focused perspective (in contrast with an individ-
ual perspective) that could contribute to addressing some
of the underlying causes of TB stigma.
Discussion
We had three main findings: TB IPC measures can both
generate stigma experiences of patients but also reflect
the stigma associated with the disease. Patient and health
workers had contrasting perspectives on the implica-
tions of TB IPC-related stigma, with patients focussing
on communal benefit, while health workers focussed
on the negative impact on the health worker-patient
relationship. Finally, recommendations to mitigate TB
IPC-related stigma included comprehensive information,
respectful communication, shifting the focus to commu-
nal safety and universal IPC precautions.
An important question when considering IPC-related
stigma is as follows: where is the boundary between IPC
in the interest of public health and an example of direct
discrimination against someone who is ill? From a con-
sequentialist philosophical perspective applied to TB, it
would be when TB IPC stops serving a purpose, when it
is futile and unnecessary. ere were examples in our data
where TB IPC measures caused harm when it evolved into
broader social norms of engaging with TB patients in all
settings, irrespective of whether they pose a risk of infec-
tion. TB IPC can in certain contexts be used to rationalise
not only direct discrimination (through individual inter-
actions) but also structural discrimination (which may
be through social structures of institutional policies). An
example of structural discrimination from our data was
some of the health facilities having norms that expected
MDR TB patients to wear masks irrespective of how long
they have been on treatment and whether they are still
infectious to other people. Guidelines that provide spe-
cific advice on the likely duration of infectiousness for
people who have started TB treatment and whether and
how TB IPC should be implemented in different settings
(household, community and health facility) would make
an important contribution and should include consid-
erations for harm caused by prolonged isolation. See for
example the National Tuberculosis Coalition of America’s
recent guidelines on isolation in community settings that
makes significant progress on this [26].
e differences in health worker and patient perspec-
tives on TB IPC-related stigma suggest that stigma miti-
gation interventions will need to account for these power
dynamics to ensure that both perspectives are engaged
with. It would also be interesting to present the emphasis
that patients place on communal safety to health work-
ers and see whether this may be a different way to train
health workers on IPC, instead of emphasising individ-
ual benefit through improving the safety of the health
worker. Using participatory research methods for TB
IPC stigma interventions may be supporting co-creating
interventions that engage with power dynamics between
health workers and patients [30].
Future work could focus on piloting stigma interven-
tions based on the recommendations in Table 2 and
should ideally focus on different levels of the Health,
Stigma and Discrimination Framework as we outlined
in Fig.1. Two recommendations for mitigation (namely
requests for detailed information and respectful commu-
nication) align with the work of Gammon and colleagues
who advised that health workers should compensate for
potentially stigmatising isolation practices with increased
Page 11 of 13
van derWesthuizenetal. BMC Global and Public Health (2024) 2:66
social contact with patients [13]. One recommendation
focussing on policy (universal instead of targeted use of
IPC measures) was made by our participants pre-pan-
demic and implemented as part of the broader COVID-
19 pandemic response. is widespread use of masks has
been viewed as having a positive impact on the stigma
associated with mask wearing for TB [31]. Drawing on
evidence from previous epidemics, the broader conceptu-
alisation of the utility of mask wearing (for COVID-19, TB
and other respiratory illnesses) may support ongoing use
of masks and could also be applicable to other airborne
IPC measures [16]. However, this needs to be researched
further, as the connotations with COVID-19 may bring
new symbolic meanings to mask wearing.
Existing research in South Africa has highlighted the
need for TB stigma interventions to be adapted to local
contexts — as there can be differences between cultural
groups [32]. In this rural Eastern Cape context, ‘ubuntu’
as a conceptual framework place emphasis on shared
humanity and collective wellbeing. e participant rec-
ommendation to focus the framing of TB IPC messages
on community-level benefits and the use of principles of
‘Ubuntu’ warrants further exploration. ere is a rich his-
tory both in the academic literature and in community
contexts that could be drawn on.
‘Ubuntu’ could refer to a moral quality in a person but
also an intellectual tradition that falls within African
humanism [33, 34]. It can be defined as follows: ‘You are
what you are because of other people. We don’t live in iso-
lation; we live in a community. at sense of community
is what makes you who you are, and if that community
becomes broken, then you yourselves also become broken.
And the restoration of that community, the healing of that
community, cannot happen unless you contribute to the
healing of it in a broader sense. I am because of others, in
relationships with others. I am not an island of myself, I am
part of the community, I am part of the greater group’ [33].
‘Ubuntu’ is a way to foreground African constructions
of the world and has been used as a conceptual frame-
work to inform diverse fields such as social work prac-
tice and African philosophy [35, 36]. It could engage
with some of the deep-rooted contributors to TB stigma
— such as feeling less than human. is shift towards
collectivism is also supported by research during the
COVID-19 pandemic that suggested public communica-
tion framing mask use as important for communal safety
was more effective than messages describing it to be
important for individual safety [37, 38].
Voluntary disclosure of TB, particularly of people
who are seen to have higher status in a certain context,
aligns with this community-focussed approach and
could reduce stigma more broadly. ere may also be
insights from other illnesses that used this approach, for
example the use of HIV-positive T-shirts (with former
President Nelson Mandela wearing this) as part of advo-
cacy for the Treatment Action Campaign [39]. As Stangl
and colleagues point out, in the example of HIV, stigma
experiences fuelled patient advocacy efforts, resilience
and improved access to healthcare [5]. Further research
should evaluate our recommendations for a stigma inter-
vention and translating it to other contexts.
Our research had key strengths, in that the team col-
lecting data combined insider perspectives (having lived
and worked in the setting) with outsider perspectives
(approaching the topic through a research lens) and a
multidisciplinary team. Limitations were that we relied
on self-reporting of TB IPC and stigma practices, since
planned observational fieldwork was disrupted by the
COVID-19 pandemic. We also acknowledge that inter-
ventions that only focus on TB IPC-related stigma in
health facilities may not be sufficient to address the
broader stigma associated with the disease in different
contexts and recommend that IPC stigma interven-
tions should be sensitive to this. Due to our recruitment
strategy that was based at health facilities, our study
did not include participants for whom TB IPC-related
stigma may have entirely prevented health care engage-
ment. e sense of community responsibility reported
by our participants may therefore not represent the per-
spectives of people with TB who did not engage in care.
Conclusions
In the rural health facilities in South Africa we studied, TB
IPC measures both reflected and contributed to the suf-
fering caused by TB through stigma. Health facilities can
play an important role in mitigating or perpetuating this
stigma, and context-sensitive interventions should explore
this further. We recommend focussing on providing com-
prehensive TB IPC information to patients, respectful
communication that also pays attention to non-verbal
cues, shifting the focus from individual benefit of IPC
implementation to communal safety and using universal
airborne IPC precautions instead of measures targeting
potentially infectious patients. Evoking ‘ubuntu’ as an Afri-
can humanist conceptual framework could provide a novel
perspective to guide these stigma mitigation interventions.
Supplementary Information
The online version contains supplementary material available at https:// doi.
org/ 10. 1186/ s44263- 024- 00097-8.
Additional file 1. Interview guide.
Additional file 2. Coding tree.
Additional file 3. COREQ checklist.
Page 12 of 13
van derWesthuizenetal. BMC Global and Public Health (2024) 2:66
Acknowledgements
The authors would like to thank the following people who supported the
research: Dr Karl Le Roux, Dr Nadisha Meyer and Catherine Young. We deeply
appreciate the contributions of the health workers and TB affected commu-
nity members who participated in this study.
Authors’ contributions
HvdW, CB, RE, STC contributed to the design of the study, HvdW, NS contrib-
uted to the data collection, all authors contributed to the interpretation of
data, HvdW produced the first draft of the paper and all authors provided
input on the paper and approved the submitted version. All authors have
agreed both to be personally accountable for their own contributions and the
integrity of any part of the work.
Funding
This publication is part of HvdW’s doctoral research which was funded by a
Rhodes Scholarship. She received support for fieldwork from the Africa Oxford
Initiative, Murrey-Speight Fund from the Rhodes Trust, Newton Exchange
Fund and Green Templeton College’s Fieldwork Funding. TG’s research is
funded from the following sources: National Institute for Health Research
(BRC-1215–20008), ESRC (ES/V010069/1), Wellcome Trust ( WT104830MA) and
Health Data Research UK (HDRUK2020.139). STC is funded by the National
Institute for Health Research (NIHR) Health Protection Research Unit in
Healthcare Associated Infections and Antimicrobial Resistance (NIHR200915),
a partnership between the UK Health Security Agency (UKHSA) and the
University of Oxford. The views expressed are those of the author(s) and not
necessarily those of the NIHR, UKHSA or the Department of Health and Social
Care. CCB acknowledges part support as Senior Investigator of the NIHR, the
NIHR Community Healthcare MedTech and In-Vitro Diagnostics Co-operative
(MIC) and the NIHR Health Protection Research Unit on Health Care Associated
Infections and Antimicrobial Resistance and was a part-time salaried general
practitioner for the Cwm Taf Morgannwg University Health Board. The funders
had no role in study design, data collection and analysis, decision to publish or
preparation of the manuscript.
Data availability
The datasets generated and/or analysed during the current study are not
publicly available due to ethics approvals requiring us to protect the confi-
dentiality of our participants. Through full transcriptions, participants may
be identifiable. To discuss access to anonymised segments and any further
requests for the data further please contact the corresponding author at
helene.vdw@phc.ox.ac.uk
Declarations
Ethics approval and consent to participate
The study was approved by the research ethics committees at the University
of Cape Town Health Sciences Faculty (HREC REF: 259/2019) and the University
of Oxford (Oxtrec number: 541–19). It received institutional permission from
the Eastern Cape Department of Health (EC_201907_010) and local permis-
sions from each health facility. Written informed consent was obtained from
all participants. The research conformed to the principles of the Helsinki
Declaration.
Consent for publication
Not applicable.
Competing interests
The authors declare no competing interests.
Author details
1 Nuffield Department of Primary Care Health Sciences, Oxford University,
Oxford, UK. 2 Division of Occupational Medicine, School of Public Health,
University of Cape Town, Cape Town, South Africa. 3 Zithulele Research Unit,
Mqanduli, South Africa.
Received: 2 July 2024 Accepted: 14 September 2024
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... Some of the common symptoms related to TB that influence an individual diagnosed with TB's ability to return to work are low physical endurance, loss of motivation, and a loss of self-esteem [6]. Other psychosocial factors include the stigma that society has towards individuals with TB due to the fear of becoming infected by them [7]. The worker roles of individuals diagnosed with TB are affected, as they often struggle to complete work tasks due to their symptoms of low physical endurance [5]. ...
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Introduction: Tuberculosis (TB) is one of the infectious diseases that is still a global health problem, including in Indonesia. TB prevention requires the active role of the family as the smallest unit of society to create a supportive environment. Studies of TB prevention behaviors in families are important to understand the factors influencing prevention success. Objective: This study analyzes factors related to TB prevention behavior in families. Methods: This study used a cross-sectional study design involving 129 families with family members with a history of TB in the Batunadua Health Center working area in Padangsidimpuan City, selected by purposive sampling. Data was collected through a structured questionnaire. Data analysis was conducted using the chi-square and logistic regression tests to see the relationship between the variables and the most meaningful variables. Results: This study found that knowledge about TB (p=0.001), access to health services (p=0.001), social and cultural environment (p=0.001), and personal health experiences (p=0.001) were related to TB prevention behavior in families. Meanwhile, the variable most related to TB prevention behavior is knowledge about TB Exp (B) = 46.888. Conclusion: This study concludes that TB prevention behavior in families is influenced by factors such as knowledge about TB, access to health services, social and cultural environment, and personal health experience, which have a significant relationship. Of the four variables, knowledge about TB is the most dominant factor influencing TB prevention behavior. Therefore, health education campaigns must be a priority, focusing on increasing family knowledge about TB through easily accessible media, such as counseling, social media, and pamphlets.
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Many Chinese Canadians (CCs) have experienced increased racism and xenophobia since the beginning of the COVID-19 pandemic. This study focused on how this rise of anti-Chinese discrimination, in addition to the threats posed by the pandemic itself, affects not only CCs’ well-being, but also their Chinese and Canadian identities. We surveyed 874 CC adults from across Canada (Mage = 42.09; 47.7% females; 628 foreign-born, first-generation [G1] and 246 Canadian-born, second or later generation [G2]). The reported rates oaf discriminatory experiences were alarming: More than half of the respondents reported that they had been treated with less respect because of their ethnicity (G1: 60.6%; G2: 56.8 %), and over a third reported they had been personally threatened or intimidated (G1: 35.2%; G2: 39.8%). Generational status moderated CCs’ pandemic experiences, such that G1 CCs perceived more health, financial, and cultural threats due to the pandemic, but G2 CCs reported more personal and group discrimination. Perceived discrimination was associated with CCs’ negative affect even after controlling for pandemic threats. The type of discrimination had different implications for heritage and mainstream cultural identities. For both groups, personal discrimination was negatively associated with Canadian identity, whereas group discrimination was positively associated with Chinese identity. Only about 10% of CCs who experienced harassment reported their encounters to authorities or on social media; CCs’ perceptions that others saw them as perpetual foreigners undermined their reporting of harassment. The findings’ implications for acculturation, identity, anti-racism strategies, and empowerment in reporting harassment are discussed.
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Background Many countries aiming to suppress SARS-CoV-2 recommend the use of face masks by the general public. The social meanings attached to masks may influence their use, but remain underinvestigated. Methods We systematically searched eight databases for studies containing qualitative data on public mask use during past epidemics, and used meta-ethnography to explore their social meanings. We compared key concepts within and across studies, then jointly wrote a critical synthesis. Results We found nine studies from China (n=5), Japan (n=1), Mexico (n=1), South Africa (n=1) and the USA (n=1). All studies describing routine mask use during epidemics were from East Asia. Participants identified masks as symbols of solidarity, civic responsibility and an allegiance to science. This effect was amplified by heightened risk perception (eg, during SARS in 2003), and by seeing masks on political leaders and in outdoor public spaces. Masks also acted as containment devices to manage threats to identity at personal and collective levels. In China and Japan, public and corporate campaigns framed routine mask use as individual responsibility for disease prevention in return for state- or corporate-sponsored healthcare access. In most studies, mask use waned as risk perception fell. In contexts where masks were mostly worn by patients with specific diseases (eg, for patients with tuberculosis in South Africa), or when trust in government was low (eg, during H1N1 in Mexico), participants described masks as stigmatising, uncomfortable or oppressive. Conclusion Face masks can take on positive social meanings linked to solidarity and altruism during epidemics. Unfortunately, these positive meanings can fail to take hold when risk perception falls, rules are seen as complex or unfair, and trust in government is low. At such times, ensuring continued use is likely to require additional efforts to promote locally appropriate positive social meanings, simplifying rules for use and ensuring fair enforcement.