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A qualitative exploration of cervical and breast cancer stigma in Karnataka, India

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BMC Women's Health
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Background Breast and cervical cancer are two of the most common cancers among women worldwide and were the two leading causes of cancer related death for women in India in 2013. While it is recognized that psychosocial and cultural factors influence access to education, prevention, screening and treatment, the role of stigma related to these two cancers has received limited attention. Methods Two qualitative exploratory studies. One focusing on cervical cancer, the other on breast cancer, were conducted in Karnataka, India using in-depth interviews and focus group discussions. In the breast cancer study, 59 in-depth interviews were conducted with patients, primary caregivers and healthcare providers. In the cervical cancer study, 147 respondents were interviewed including older and younger women, husbands, healthcare providers and community leaders. While stigma was not the focus of either study, themes relating to stigma emerged and are the focus of this analysis. Results Cancer stigma emerged as a general theme across both data sets. It appeared throughout the transcripts as descriptions of how women with breast or cervical cancer would be treated and talked about by husbands, family and the community (manifestations of stigma) and the reasons for this behavior. Stigma as a theme also arose through discussions around managing disclosure of a cancer diagnosis. Stigma was juxtaposed with a narrative of support for women with cancer. Three major themes emerged as driving the manifestations of cancer stigma: fear of casual transmission of cancer; personal responsibility for having caused cancer, and; belief in and fear of the inevitability of disability and death with a cancer diagnosis. Manifestations of cancer stigma were described in terms of experienced (enacted) stigma, including isolation or verbal stigma, and anticipated (fear of) stigma, should a cancer diagnosis be disclosed. Conclusions The presence in these communities of cancer stigma and its many forms emerged across both the cervical and breast cancer data sets. Stigma was a feared outcome of a cancer diagnosis and described as a barrier to screening, early diagnosis and treatment seeking for women with symptoms. While further research on cancer stigma is needed, this exploration of some of the driving factors provides insight for future programmatic efforts to reduce cancer stigma and improve access to information, screening and treatment. Electronic supplementary material The online version of this article (doi:10.1186/s12905-017-0407-x) contains supplementary material, which is available to authorized users.
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R E S E A R C H A R T I C L E Open Access
A qualitative exploration of cervical and
breast cancer stigma in Karnataka, India
Laura Nyblade
1*
, Melissa Stockton
1
, Sandra Travasso
2
and Suneeta Krishnan
2
Abstract
Background: Breast and cervical cancer are two of the most common cancers among women worldwide and
were the two leading causes of cancer related death for women in India in 2013. While it is recognized that
psychosocial and cultural factors influence access to education, prevention, screening and treatment, the role of
stigma related to these two cancers has received limited attention.
Methods: Two qualitative exploratory studies. One focusing on cervical cancer, the other on breast cancer, were
conducted in Karnataka, India using in-depth interviews and focus group discussions. In the breast cancer study, 59
in-depth interviews were conducted with patients, primary caregivers and healthcare providers. In the cervical
cancer study, 147 respondents were interviewed including older and younger women, husbands, healthcare
providers and community leaders. While stigma was not the focus of either study, themes relating to stigma
emerged and are the focus of this analysis.
Results: Cancer stigma emerged as a general theme across both data sets. It appeared throughout the transcripts
as descriptions of how women with breast or cervical cancer would be treated and talked about by husbands,
family and the community (manifestations of stigma) and the reasons for this behavior. Stigma as a theme also
arose through discussions around managing disclosure of a cancer diagnosis. Stigma was juxtaposed with a
narrative of support for women with cancer. Three major themes emerged as driving the manifestations of cancer
stigma: fear of casual transmission of cancer; personal responsibility for having caused cancer, and; belief in and fear
of the inevitability of disability and death with a cancer diagnosis. Manifestations of cancer stigma were described
in terms of experienced (enacted) stigma, including isolation or verbal stigma, and anticipated (fear of) stigma,
should a cancer diagnosis be disclosed.
Conclusions: The presence in these communities of cancer stigma and its many forms emerged across both the
cervical and breast cancer data sets. Stigma was a feared outcome of a cancer diagnosis and described as a barrier
to screening, early diagnosis and treatment seeking for women with symptoms. While further research on cancer
stigma is needed, this exploration of some of the driving factors provides insight for future programmatic efforts to
reduce cancer stigma and improve access to information, screening and treatment.
Keywords: Cervical cancer, Breast cancer, Stigma, Psychosocial barriers
Background
Breast and cervical cancer are two of the most common
cancers among women worldwide [1, 2]. Much of the
global burden of these two cancers is in low and middle
income countries (LMICs) where around 53% of global
breast cancer cases and around 85% of cervical cancer
cases occur [1, 3]. In India, cervical and breast cancer
were the two leading causes of cancer related deaths for
women in 2013 [2]; of the estimated 326,300 female
cancer deaths, 21.5% were caused by breast cancer and
20.7% were caused by cervical cancer [4]. India, where
over 120,000 new cases of cervical cancer are diagnosed
annually, bears about a fifth of the global burden of
cervical cancer [5]. In 2015, there were an estimated
155,000 new cases of breast cancer and about 76,000
Indian women were estimated to have died of the dis-
ease [6, 7]. By 2020, it is estimated that there will be
* Correspondence: lnyblade@rti.org
1
RTI International, 701 13th ST NW, Suite, Washington, DC 750, USA
Full list of author information is available at the end of the article
© The Author(s). 2017 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0
International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and
reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to
the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver
(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
Nyblade et al. BMC Women's Health (2017) 17:58
DOI 10.1186/s12905-017-0407-x
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
nearly 180,000 new cases of breast cancer and 105,000
new cases of cervical cancer in India [8]. Research has
shown that many factors acting at each of the socio-
ecological levels individual, family, community, health-
care facility, and policy impact access to cervical and
breast cancer prevention, screening, treatment, and
ultimately health outcomes. These factors include, but
are not limited to socioeconomic disparities, healthcare
systems, gender inequalities, low levels of knowledge,
fear and psychosocial barriers [913].
Stigma is increasingly recognized as a critical psycho-
social barrier to, and key social determinant of, health [14],
its negative impact on health most clearly documented in
the field of HIV [1521]. Recognition of the potential role
of stigma to similarly undermine the cancer care con-
tinuum [22], particularly cervical and breast cancer pre-
vention, screening, and treatment [10, 11, 13, 23, 24], is
beginning to grow, though empirical evidence is still
limited. The importance of recognizing and exploring
cancer related stigma in India is also gaining attention
[13, 22, 24]. For example, a qualitative study conducted
in India exploring stigma related to any cancer found
that participants believed others would think that
cancer was a result of sin,that they may rejected by
either or both their communities and families, and that
they would be isolated due to the false perception of
cancer being an infectious disease [22]. A review on
underutilization of cervical cancer prevention services
in LMICs, including India, identified stigma attached to
discussing reproductive health issues as a barrier to
knowledge of cervical cancer and its prevention [11]. A
qualitative study on challenges to cancer treatment in
India identified cultural values and stigma as key bar-
riers to treatment [10], while a qualitative study in
Thailand found that women faced social stigma and
isolation following breast cancer treatment [25]. An-
other qualitative study conducted in India found that
social stigma as a result of believing breast health prob-
lems were a reflection of poor character contributed to
hiding breast cancer symptoms[26].Furthermore,the
link between cervical cancer and the human papilloma-
virus, a common sexually transmitted infection, has fur-
ther stigmatized this disease in some places [27].
Stigma is a powerful social process occurring within
the context of power that has been described by Link
and Phelan as beginning with labelling, followed by
stereotyping, which leads to separation, and ultimately
results in status loss and discrimination (the endpoint of
the stigmatization process) (Fig. 1) [28]. Discrimination
is the unfair and unjust action toward an individual or
group on the basis of real or perceived status or attributes
[29]. Individuals face stigma for differences relating to
both health status (e.g. disease specific) and non-health
characteristics (e.g. poverty, gender). Individuals or groups
with several stigmatized conditions or characteristics often
experience multiple intersections of stigma, intensifying
the negative effects of stigma [3033]. Stigma manifests in
many ways and can be categorized into several distinct
types [34, 35], (Table 1), all of which can lead to negative
health and social outcomes for breast and cervical cancer
patients and survivors.
Understanding the different types and forms of
stigma,aswellasunderlyingcausesisnecessaryto
design effective responses to stigma. The need for
further investment to understand and respond to cer-
vical and breast cancer stigma has been recognized
[23]. To date, few studies have attempted to unpack
stigma related to cervical or breast cancer, especially
with respect to examining programmatically action-
able causes of that stigma. In response, this paper
examines stigma, with a focus on causes and manifes-
tations in two exploratory qualitative studies con-
ducted in Karnataka, India. One on breast cancer, the
other on cervical cancer.
Fig. 1 Stigmatization Process. Legend: Sources: Link, B.G. and J.C. Phelan
2001. Conceptualizing Stigma.Annual Review of Sociology: 363385
Table 1 Types of Stigma
Experienced Stigma that is enacted through interpersonal acts
of discrimination
Perceived Perception of the prevalence of stigmatizing attitudes
in the community or among other groups (e.g.
healthcare providers)
Anticipated Fear of stigma, whether or not it is actually experienced
Secondary Stigma by association, extended to family or other
caregivers of stigmatized individual
Observed Stigma occurring to others that is witnessed or heard
about
Layered The intersecting of stigmas faced by individuals who
are part of multiple marginalized groups
Adapted from: Nyblade et al. Perceived, anticipated and experienced stigma:
exploring manifestations and implications for young peoples sexual and
reproductive health and access to care in North-Western Tanzania[35]
Nyblade et al. BMC Women's Health (2017) 17:58 Page 2 of 15
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Methods
This paper presents analysis of data from two qualitative,
exploratory studies, one focusing on breast cancer and
the other on cervical cancer. Both studies were guided
by the social-ecological model [3638] as it applies to
the cancer care continuum. This approach posits that
illness-related behaviours such as care-seeking and expe-
riences are influenced not only by individual characteris-
tics, perceptions, and resources, but also by contextual
factors and processes, such as family support, health
care organization, and community norms. Zapka et al.
(2010) have used this model to understand factors asso-
ciated with follow-up of abnormal screening test results
for breast, cervical and colorectal cancers in the United
States, and to guide the identification and evaluation of
multilevel interventions to improve follow-up [36]. In
our application of this framework, we hypothesized that
factors at the level of the individual, family, provider/
health care organization, and community will influence
breast and cervical cancer prevention, management and
survivorship. In keeping with this framework, we exam-
ined the drivers and manifestations of cancer stigma at
the individual, family, institutional (health providers)
and broader community levels.
Both studies were conducted in the southern Indian
state of Karnataka between November 2013 and May
2014. While investigating stigma was not the main object-
ive of either study, themes relating to stigma emerged
consistently across both studies and are the focus of
analysis for this paper. The breast cancer study was con-
ducted among patients and their caregivers at a tertiary
care hospital, the cervical cancer study was conducted
among women and men in a community setting. Individ-
ual descriptions of each studys setting, participants, data
collection methods and data analysis software can be
found in Table 2. Sample size for both studies was struc-
tured to reach saturation within each of the types of
respondents identified as key to interview for the objec-
tives of the study. Convenience sampling within the pur-
posively selected groups was employed for both studies.
Table 2 Study and participant details of the Breast and Cervical Cancer Studies
Parameter Breast Cancer Study Cervical Cancer Study
Location Tertiary care hospital: St. Johns Medical College
and Hospital, Bangalore, Karnataka
Community based: Bangalore Rural and Chikkaballapura Districts,
Karnataka through collaboration with Cancer Care India (CCI), an
NGO that provides cervical cancer education, screening, diagnostic
and treatment services.
Data collection
methods
- In-depth interviews - Focus Group Discussions (FGD)
- In-depth interviews (IDI)
Participants Inclusion Criteria
- Patients with a histo-pathologically
confirmed diagnosis of breast cancer with
early, advanced and metastatic disease,
their caregivers, and healthcare providers
- Above age 18 and fluent in English,
Kannada, or Tamil
-FGD inclusion criteria: Women eligible for screening (3045 years,
4660 years) and husbands of women in this age range
-IDI inclusion criteria: Women in the exposed villages who had undergone
screening, frontline health care workers (physicians, nurses and community
health workers), and community leaders (community day care workers,
teachers, members of village government)
Sample size
Participants Number of IDIs Participants Number of FDGs Number of IDIs Total number
of individuals
Patients 27 Exposed Villages
b
Primary caregivers 22 Women 4 43
Screened women 6 6
Healthcare providers 10 Husbands 2 21
Unexposed Villages
c
Total 59 Younger Women 4 38
Husbands 2 18
Healthcare Providers 8
a
10
Community Leaders 10
a
11
Total 12 24 147
Data Analysis software NVivo 9.2 NVivo 9.2 and Atlas Ti
a
Joint interviews with two or more respondents
b
Exposed: where CCI implemented outreach programs
c
Unexposed: where CCI planned to conduct outreach programs but had not yet done so
Nyblade et al. BMC Women's Health (2017) 17:58 Page 3 of 15
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Interviewers underwent in-depth training on cervical and
breast cancers, etiology, prevention, management and
consequences; they also underwent additional training on
ethics and on conducting focus groups and in-depth inter-
views. Moreover, they were closely supervised during data
collection. The training and supervision aimed to
minimize potential interviewer biases. The interviewers,
who are not authors of this manuscript, are female, have a
mix of education ranging from completing secondary
school to Masters degrees, more than 5 years of experi-
ence and on-the-job training on survey and qualitative re-
search data collection.
Breast cancer (BC) study
Research was conducted at the St. Johns Medical
College and Hospital (SJMCH) in Bengaluru (Bangalore),
the capital city of the southern Indian state of Karnataka.
According to the 3-year report of population based can-
cer registries for 20122014, in the Bangalore registry
area breast cancer was the most common cancer among
women accounting for 27.5% of all female cancers, with
a crude incidence rate of 29.3% and an age-adjusted inci-
dence rate of 34.4% [8].
The study was designed to assess breast cancer pa-
tients, their primary caregivers and healthcare providers
understanding of breast cancer, as well as their perspec-
tives on cancer care, care trajectories, and multilevel in-
fluences. This included family and community reactions
to symptoms and diagnosis, as well as availability and
access to different types of healthcare facilities. To en-
sure a wide range of experiences and to explore various
facilitators or barriers to diagnosis and treatment, pa-
tients with a histo-pathologically confirmed diagnosis of
breast cancer with varying stage of illness were recruited.
Potentially eligible and interested patients and caregivers
were referred to the research interviewers by the treating
surgeon/physician/nurse for eligibility screening and in-
formed consent. Interviews, lasting 45 to 90 min, were
conducted privately in a closed counseling or consult-
ation room at the hospital.
Cervical cancer (CC) study
Data was collected in villages in two rural districts
close to Bangalore city, Karnataka. While there is cur-
rently no organized cervical cancer screening program
in Karnataka, there are several public and private ter-
tiary hospitals (including the regional cancer center in
Bangalore), medical colleges and non-governmental
organizations (e.g. Cancer Care India-CCI) that offer cer-
vical cancer screening and linkages to diagnostic and
treatment services. According to the 3-year cancer
registry report, cervical cancer was the second most
common cancer among women in the Bangalore regis-
try area, accounting for 12.3% of all female cancers with
a crude incidence rate of 13.1% and an age-adjusted in-
cidence rate of 15.3% [30].
The purpose of the study was to assess perceptions of
cervical cancer, screening, and gynecological examina-
tions, as well as explore factors that may facilitate or
pose barriers to screening or seeking gynecological
services. Data were gathered from villages where CCIs
team of doctors, social workers and local community
volunteers had conducted education and screening out-
reach programs described in this paper as exposed-
and villages where CCI planned to conduct outreach
programs but had not yet done so described as unex-
posed. As CCI was involved with cancer education and
service delivery in these villages, CCI had established a
relationship with the community at large. CCI recruited
potential participants in the target groups and referred
interested individuals to the research team for eligibility
screening. Interviews, lasting 45 to 90 min, were con-
ducted privately at a central location in the village a
school or day care center that was made available for the
interviews.
Ethics statement
Both study protocols were reviewed and approved by the
Office of Research Protection, Institutional Review
Board, RTI International. For the breast cancer study,
additional approval was obtained from St. Johns
National Academy of Health Sciences Institutional
Ethics Committee. For both studies, the content of the
informed consent form (either in English or the local
languages), the intent and objectives of the study, as well
as risks and benefits, were verbally explained by inter-
viewers to potential participants. Individuals who pro-
vided written consent were enrolled. For the breast
cancer study a token of appreciation (refreshment, a nu-
tritional supplement and a folder to hold care-related
documents costing approximately USD $8) was given to
participants to compensate for their time. For both stud-
ies, individual participants had no established relation-
ship with the interviewers prior to recruitment.
Data collection and analysis
Interviews and discussions were digitally recorded and
interviewers took field notes. Digitally recorded inter-
views and discussions were translated and transcribed
into English. A summary of interview guide topics is
provided in Table 3. All English transcripts and record-
ings were independently reviewed for accuracy and
completeness. These transcripts were not returned to
participants for comment or correction. Transcripts
were managed and analyzed using software packages
(NVivo 9.2 and Atlas Ti). The analysis approach used a
combination of predetermined and derived themes for
data coding. Transcripts were first read repeatedly by
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the respective analysis teams until content familiarity
was high and key themes could be summarized. A code-
book was then developed using key themes emerging
from the data as well as concepts or issues of interest at
study outset. To ensure consistency, two members of
each respective team double coded a small number of
transcripts, compared their results, and further refined
the codebooks. The remaining transcripts were coded by
one individual from each research team. Coded data
were reviewed to examine similarities and differences
within each theme and between groups. Participants did
not provide feedback on the analysis. Interview guides
for both studies, which were developed by the authors
and piloted for comprehensibility, are available as
Additional files 1 and 2.
Results
Cancer stigma emerged as a general theme across both
data sets, though most strongly in the transcripts from
the cervical cancer study. This was in part a reflection of
the design of the two studies, with questions and probes
to explore stigma being a specific sub-focus in the inter-
view guides for the cervical cancer study, but not for the
breast cancer study. Within the cervical cancer study, no
significant differences in stigma emerged between
women who lived in villages that had been exposed to
cervical cancer screening versus those living in villages
that had not been exposed to screening. Of note is that
stigma emerged as a consistent theme within the breast
cancer study data even though there were no specific
questions on it. Stigma appeared throughout the tran-
scripts as descriptions of how women with breast or cer-
vical cancer would be treated and talked about by
husbands, family and the community (manifestations of
stigma) and the reasons for this behaviour (drivers).
Stigma also emerged through discussion around disclos-
ure of a cancer diagnosis and the pros and cons of shar-
ing that diagnosis, sometimes even with the patient. At
the same time, a strong narrative of support for women
with cancer also emerged, sometimes with both support
and manifestations of stigma expressed in the same tran-
script, reflecting the nuances of the situation.
With an eye to entry points for programmatic ac-
tion to address stigma for improved health outcomes,
this section is organized with a focus on the drivers
(causes) of stigma that emerged, the manifestations of
stigma described, and the consequences that follow
stigma. The HIV stigma experience has demonstrated
that understanding key immediately actionable drivers
of stigma provides a pathway to potential opportun-
ities for programmatic action to reduce stigma. In the
case of HIV, stigma reduction has been possible
specifically through addressing awareness of stigma,
fear, and value-based judgements [39, 40]. Figure 2
illustrates the drivers, manifestations and outcomes of
cancer stigma as they emerged in these data sets for
breast and cervical cancer stigma. Figure 2 also high-
lights potential opportunities for programmatic action
to reduce cancer stigma that are directly linked to the
drivers.
Drivers
Three major themes emerged as driving the manifes-
tations of cancer stigma described by participants:
fear of cancer transmission; personal responsibility
for having caused cancer, and; belief in and fear of
the inevitability of disability and death with a cancer
diagnosis.
Table 3 Questionnaire guide details
Breast Cancer Study Cervical Cancer Study
Knowledge and awareness about breast cancer
Pre-diagnosis
- Symptoms
- Experience seeking care
Diagnosis
- Experience receiving diagnosis
- Personal and family reaction
Treatment
- Treatment experience
- Side effects
Perceptions of care
Financial impact
Family and social relationships
- Family and social support
- Changes in relationships
Survivorship
- Strategies for improving the cancer care trajectory
- Future plans beyond treatment
Provider role and experiences providing cancer care
Provider perspectives on improving breast cancer prevention
and treatment
Awareness about cervical cancer
- Knowledge of: risk factors for cervical, symptoms, prevention, treatability
- Sources of information
Facilitators and barriers to cervical cancer screening (uterus/pelvic exams)
- Knowledge of screening
- Comfort going to or talking about screening and cervical cancer symptoms
- Reasons for not screening
- Willingness to be screened in the absence of symptoms
- Family and community support of cervical cancer screening
- Potential strategies for facilitating screening
- Stigma: Community & family reactions to cancer
- Changes in familial relationships
- Social isolation
- Shame & embarrassment
- Differences in treatment of women with different types of cancer
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Cancer as contagious
The fear that cancer could be transmitted through
casual contact was the most persistent theme emer-
ging from both data sets, often linked to discussions
around physical isolation of people living with cancer
and as the reason for doing so: once they know that
the person is having cancer, they will never let them
near. They do not behave normally.theyareafraid
that the disease will come to them. They feel the can-
cer might spread from one person to another.(IDI
CC healthcare provider)There was fear that cancer
could be transmitted through sharing eating utensils,
sleeping in the same room, playing with children,
through cooking food or just general socializing. The
quote below typifies the way in which this fear was
discussed throughout the transcripts.
R2: They will avoid going to their places thinking it
will spread to them also.
R3: If they offer anything to eat they dont take it. Even
they will advise their kids to avoid them.
R4: They wouldnt like to share food in the same plate.
R1: They think that they are having cancer and if
we eat in their plate, we will also get it. From us it
will spread to our family members like this they
fear.
R2: They think it is contagious disease.
R3: All diseases will spread from one person to other.
(CC FG women).
While many respondents noted that cancer was not
contagious, and isolating people with cancer was wrong,
they also observed that it was still a common belief, that
otherscontinued to fear they could contract cancer
through daily interactions as they might feel that they
will get the disease if they touch them,and thus behaved
poorly towards people: they dont care for them.(IDI
CC Community Leader) As this woman who had been
screened for cervical cancer and a healthcare provider
from the breast cancer study explain:
Everyone mainly have a feeling that it is a contagious
diseaseThe moment they know a person is having
cancer then the first thing that comes to their mind is
it is a contagious diseaseThey stay away from the
patients. They avoid them in the family. They behave
in such a way that the patients leave the house
voluntarily. Yes. They do that. But it is actually
wrong.(IDI CC woman)
People are worried that this patient who is on
treatment, she will spread the cancer to the children in
the house and to the neighbors. So we have seen sadly
many times that these patients are unnecessarily
isolated because of the wrong notion that these people
have done something so wrong to get this disease or
they may spread it to people in the house. So there is a
lot of stigma associated with cancer. Cancer is a
disease in our country which will always be associated
with stigma even though it is no fault of the patient.
(BC healthcare provider)
This fear of cancer being transmissible even extends to
those living with cancer. As a breast cancer patient
Fig. 2 Results Framework
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explained, she herself was afraid she could transmit cancer
and only after I asked doctors and they advised not to fear
and told that this is not contagious, even if you eat in the
same plate other person will not get this, so it will not
spread and you can move with all, without fear. Only after
his words I got convinced and started to mingle happily.
(IDI BC patient) While another respondent living with
breast cancer described her continued doubts about
whether her cancer was transmissible: Because relatives
think that the disease will spread to them, while eating,
talking, they have that kind of fear; even I am unaware
whether this will spread like that.(IDI BC patient).
The negative impact of this fear and the isolation that
ensues on women living with cancer, including being
afraid to share their diagnosis, is described by this re-
spondent, also living with breast cancer.
Other people think they should not share food, clothes
and they should not share soap and also they wont
sleep with others. They should be separate onlyI
suffered very much and I thought I should not live,
that is very difficult for me.(IDI BC patient)
Others also recognized the negative impact of the stig-
matizing avoidance behaviors on people living with can-
cer, including how it could lead to self-isolation to avoid
the stigma and even suicide.
Each and every person will talk bad of her and due to
this, she feels she is being isolated. Since others talk badly
they feel like staying away from others. They do not mingle
with others or go out to functions.(IDI CC woman)
Cancer as punishment
The belief that a cancer diagnosis in general is the result
of having done something bad emerged as a consistent
theme in both data sets: When a woman is having can-
cer then they will tell she must have done something
wrong and hence she is having cancer.(FDG CC
women) The supposed bad deed may have occurred in
the current, or a past life as explained by these two men
in a focus group discussion: R1: They will say that it is
the reaction of their bad deedsR2: They will say it is
their result of previous births bad deeds.(FDG CC men)
Belief in cancer as divine retribution for that bad act, as
karmic justice, a curse, or the will of god is explained by
a healthcare provider:
Karma. They use that word. They say, it must be
their last births karma or present lifes karma”…
Second thing is, this family has done something wrong
to some other people. They have got it due to karma or
some wrong thing that they have done. All those things
they will say.(IDI CC healthcare provider)
The whatof the assumed bad deed was generally not
specified: In our community people say that your family
got in a curse, that is why disease will be getting in your
family itself.(IDI BC patient) As this respondent ex-
plained, even among educated persons, this general
sense of cancer as punishment holds forth:
But generally what I have heard is that one would get
this if they have done something wrong. They say, You
have done something wrong. You are facing
punishment for your wrong doings. God is punishing
you.All those things I have heard from my own
husband. I have experienced this. The reason why I
am telling this is, we are all educated and as per
Gods will we are quite well off. But even at this level
there are people who think like this.(IDI BC
caregiver)
In addition to the general belief of punishment of un-
defined baddeeds, a few respondents raised the issue of
sexual transgressions being the cause of the cancer. Im-
plying that women with breast or cervical cancer were
responsible for the cancer diagnosis because they had
engaged in behaviour society considered immoral or
sexually deviant.
R2: There will be a different people who start thinking
that women having problems are having sex with
others.
R1: Yes. Women are afraid what others would think
that way about them(FGD CC women)
Interestingly, while several respondents mentioned sex-
ual transmission as one of several possible causes of can-
cer, transmission of a cancer-causing pathogen (e.g.
HPV) through sex did not seem to be the underlying
reason for linking sex to cancer. Rather it was more the
idea of cancer as punishment for the moral transgression
caused by improper sexual relations.
Cancer as a death sentence
A strong belief that cancer is incurable and those who
have it will die quickly, permeated the transcripts.
Life is finished nothing is there after getting
cancer.There is a belief among people that people
will die if they get cancer. They dont know there are
many types in cancer and cancers are curable.(IDI
BC patient)
The other thing is that everyone has a feeling that a
person having cancer will die soon and will not
survive for long.(IDI community leader)
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The assumed inevitability of death coupled with the fear
of illness and death also led to avoidance of the person
with cancer, both within and outside the family: People
in the family will know about it, and they [cancer
patient] will be tired all the time, so they [family] might
be afraid to be with them.(IDI community leader)
Discussing reaction in the broader community, this
group of women explained that: Some feel anyhow she
is not going to survive for more days, some feel she is af-
fected with cancer and we should maintain a distance
from her.(FGD CC women) This same group went on
to discuss how distance will be maintained, for example
if a woman with cancer tried to join other women so-
cially they R1: wouldnt accept her casually. R2:
When she comes there some other people will go from
there.(FGD CC women) They explained the reasons
for this behavior as a combination of fear of trans-
mission, general discomfort with someone who is sick
and a fear of death: R1: They feel disturbed when
theyseepeoplelikethem.R2:Somewillfearitiscon-
tagious, so they will move away. R3: Some will fear
death.(FGD CC women).
In addition to a fear of being near someone who was
assumed to be dying, was the assumption that the per-
son would no longer be able to fulfil their expected roles
in the family and society as that they would be too sick
to continue with work. They will not be able to do any
work at all. She will feel tiredShe cannot do any work
at allI have seen myself that they will be in a very bad
state.(FGD CC men) As these studies were focused on
breast and cervical cancer, and hence women, much of
the discussion was focused on no longer being able to
fulfil roles within the household as wife (sexual partner),
mother and daughter-in-law, as opposed to no longer
being able to work in formal employment. The woman
could feel tired and may not be able cook or wash
clothes. They have to send kids for schools. When all
these things are disturbed, the pressure is on husband,
which will affect relations. The problems will be much
more when in-laws are at home. She will have to take
care of them along with kids and other household respon-
sibilities. That way pressure will build upIf in- laws
live with them, then I think its even more difficult.(IDI
CC community leader).
One group of young women described how a cancer
diagnosis would mean that the mother-in-law would
begin looking for a new wife for her son. If it is between
mother in law and daughter in law then mothers in law
will be thinking to remarry her son.(FGD CC women)
While another group discussed how husbands would
seek out other sexual partners because the woman
would no longer be a fit sexual partner, some will have
another illegitimate relationship.(FGD CC women) A
health care provider confirmed this is an issue: They
acknowledge to us that their husband is not coming near
them. He is going to someone else and having relations
there.(IDI CC healthcare provider) Concern that a
diagnosis would lead a husband to stray was also raised
as reason why women might hesitate to get screened or
seek help for symptoms.
Even though men send for the test, ladies dontgo
because they are scared that if they have disease
husband may leave her and go to another lady. So
even though they have disease they dont go for the
test, they think that they [husband] will not have
sexual relationship with them and they will go to other
ladies, if they come to know they have disease. Some
people dont tell even if they have stomach ache thinking
that people will assume that they have disease, they
dont go for test, so they are scared. Almost all ladies
will have that fear.(FGD CC women)
While less commonly discussed, some respondents did
note that women with cancer would likely no longer be
able to work outside the home, either because they were
too weak, or because employers would discriminate
against them and not allow them to work.
R1: They wouldnt take her for work at all.
R2: First of all they couldnt work also.
R1: They wouldnt take her for work.
R2: Once they come to know about it they wouldnt
take her for work even if she in starting stage.
R3: Main reason is while working in our field if she had
some problems we might have to face the consequences.
Thats the main attitude.(FGD CC women)
They will not be able to do the work properly. If they
go to the factory then they will have a target to meet.
They will not be able to meet the targets and they will
not have the strength. So the factory owners will not
co-operate them when they know she has this disease.
When they do not encourage, the women will find it
difficult to cope up.(IDI CC community leader).
In addition to a general fear of death and being near some-
one perceived to be dying, there was a sense conveyed that
a person with cancer, since it is assumed they would no
longer be fully functioning members of family or society
and will die soon, was simply no longer worth paying at-
tention to. From the beginning there is an illusion that this
disease cannot be cured so, why should we keep in touch
with her? Like this they will think.(FDG CC men).
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Manifestations of stigma
Drivers and manifestations (forms) of stigma were closely
linked in the transcripts, often within the same sentence.
Anticipated (fear of) stigma was the most frequently de-
scribed form, followed by experienced (enacted stigma).
The manifestations of stigma, whether anticipated or
experienced, grouped broadly into isolation (physical and
social) and verbal abuse.
Isolation
The most commonly described forms of stigma were
physical and social isolation. She will not be entertained.
They show disgust and people try to keep distance from
her …” (IDI CC community Leader) The anticipation
(fear) that stigma would happen once word got out of a
cancer diagnosis was a common thread throughout the
transcripts: They would fear about the reactions of the
neighbors.(FGD CC women) As described earlier when
discussing fear of transmission as a driver of stigma,
avoidance manifested through behaviors such as keeping
patients in a separate room, providing separate food as
well as eating utensils, not allowing the person with can-
cer to bathe in the same place as their family members,
restricting the touching of food (e.g. cooking or serving),
no longer visiting people with cancer in their house or
avoiding them in public. Fear of isolation was related to
isolation both within and beyond the family.
They are not sure what the reaction of family
members would be. They are afraid that they might be
rejected and isolated. They are not sure if they would
be encouraged in this matter.(IDI CC healthcare
provider)
R1: They have fear that people will look down up on
them if they detect cancer. If they have children, they
will fear it could affect their children
R1: Sometimes they are afraid of relatives and what
they would talk about them
R2: They feel they will die early and her family will
be spoilt.(FGD CC men)
Of note was the occasional juxtaposition of describing
the physical separation of a person or items they use
as something normal and protective to do, with in-
sistence that the person was being treated well. Point-
ing to a lack of awareness that the isolating behaviour
was stigmatizing.
These practical things will be kept separate, but there
wont be discrimination for care and empathy.(IDI
BC caregiver)
They will not mingle with her and they will not share
food with her. They will not eat in their plate or they
do not share the utensils with her. They might keep
things separately for her. But the relation will be
there.(FGD CC men)
This non-recognition that the described avoidance be-
haviours are indeed stigmatizing and discriminatory, and
unnecessary from a transmission standpoint, is illus-
trated in this exchange between a community leader and
the interviewer:
They dont usually ill-treat her. They would definitely
treat her well at homeIn the households that I know I
have come across keeping things separately for them.
They keep separate clothes and plates for them in the
familyIn the house, there are kids and they advise those
people to stay away from children until they are cured.
They [Patient] also understand the situation and stay
away from others. They do have a feeling and they try to
take preventive measures.(IDI CC community leader)
A commonly expressed fear was that isolation would not
only extend to the person living with cancer, but to their
families (secondary stigma). Damaging the life chances of
children, especially the marriage prospects of a daughter.
Idont speak, because I feel that others shouldnt know
that I have this problemWhy to say this unnecessarily
to others, they talk it in a different way, they look at me
differently. I have a child. I have to do marriage for her,
and her education will get spoiled, as she is the only girl,
her education will get spoiled and people around us
may speak something, they may say that your mother
had and you may also get like that, so I avoided as it
would have been humiliating. My family members are
looking at me well, there are no issuesothers might see
me differentlyThey will think low about me and they
would have avoided me from them and that would
affect my daughtersfuturelife.(IDI BC patient)
You take our home care team, there are lots of
times when family members will tell, Please dont
park the auto right in front.They are worried. Now
what are they worried about? One is, will somebody
else get it? But more importantly, there is a girl to
be married in the familyIt is not restricted to only
the lower socio-economic strata. The guy could be a
PhD from Harvard but he might have that fear.
(IDI BC healthcare provider)
If they do not know there is cancer it is ok or else they
will say she has cancer, we do not want girl from this
family.(IDI CC community leader)
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While not frequently mentioned, a particularly severe
and feared form of isolation was abandonment by hus-
band or family. Description of abandonment was often
caveated, noting whether it happened or not would be
dependent on whether it was a goodfamily or not.
Some of them will leave their wife. Some of them will
treat them well. Some of them keep them away saying
you have cancer. Dont come near me, do not talk to
me and I will send you awaylike this.(IDI CC
community leader)
In our family some of them have given concerns for
us. Some family members they have neglected us
Before they will come very often but now it was
reducedThey will not support me more. But, I have
lot of support for my friends.(IDI BC caregiver)
Verbal Abuse
In addition to isolation, another commonly described
manifestation of stigma throughout the transcripts was
verbal abuse towards people living with cancer, which
was expressed in varied ways:
Scolding: One woman who has cancer in our village,
that lady who died, that time in communities some
people scolded her and they separated her from the
house(IDI BC patient);
Teasing: well, in the society other people will tease
her.(IDI CC healthcare provider);
Talking badly about the person: They will use
abusing words to her.(FGD CC women);
Blaming: she used to do bad things. And hence she
got it. She deserves to suffer.(IDI CC community
leader).
While few breast cancer patients recounted experi-
encing verbal abuse, they talked about what they had
heard people saying about other cancer patients be-
hind their backs. This led to the assumption that the
same was being said about them out of ear shot:
They look at me in disgusting way. People are talk-
ing behind me she has cancer who will marry her
daughter?They donttalkaboutme[to my face], but
Iheardthemtalkaboutotherpeopleverybadly.So,I
thinkeventheytalkaboutmebadlyThey say that
she has got cancer, who will marry her daughter?’”
(IDI BC patient) Another respondent, in discussing
how her relatives responded to her breast cancer
diagnosis noted that they gave her positive encourage-
ment, but that she also wondered what they were say-
ing behind her back: they were telling dont worry,
nothingwillbehappen.Idontknowwhattheywere
talking behind me.(IDI BC patient).
An additional theme linked to discussions of verbal
abuse was that it was predicated on the womanspast
behavior. Some respondents explained that whether a
woman living with cancer received verbal abuse would
depend on her assumed moral character.
Only if the woman has done wrong things in the past
they will scold her. Otherwise, they will not scold her.
Yes. They will not scold if her behaviour is good. They
will speak badly of her only when her behaviour is not
good.(IDI CC Healthcare provider)
Gossip and distrust in confidentiality of medicalproviders
Another form of verbal abuse that permeated the tran-
scripts was gossip and fear that word would spread
quickly, thus triggering isolation and verbal abuse:
Once they know they have cancer everyone will get to
know about it. It is enough if one come to know, then
whole village will know that she has cancer. Once they
know they gossip among themselves saying what she
did to get cancer?They speak badly of people getting
cancer. They will say that, maybe she has done
something wrong, thats why she has got it or someone
in the house has done something wrong and that is
why she has cancer.(IDI CC community leader)
Some might feel if they have such problems and they
share it with others then those people might think
wrong about her. She fears what others would talk
about her.(IDI CC healthcare provider)
Linked to fear of gossip and its consequences were de-
scriptions of how gossip spreads in a community and a
fear that interacting with the health system could be the
light that sparks gossip. This could happen simply be-
cause one was seen going to a health center or special
camp for cervical cancer screening, but also reflected an
expressed lack of trust that health providers would
maintain confidentiality.
R2: There is a government hospital in the village. If
they go for test there, they feel the information will
leak out and everyone will come to know about their
problems. Hence, they are afraid to get tested at
times.(FGD CC women)
They fear that everyone will come to know about their
problem. Some people do not go to the camp because
they feel their problems which they would have kept
secret would come out.(IDI CC community leader)
R2: They feel that the doctor will come to know about
the disease they have and will tell to others
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R3: Due to this, others will come to know about the
disease they have. Thinking about all these things,
they do not go to the doctor at all
R4: Some of them are afraid of the disease and afraid
where others will come to know about it.(FGD CC
women)
Expressions of support
While many forms of stigma were described throughout
the transcripts, expressions of support were also com-
mon,He [her husband] might neglect her. But husbands
who really love their wife would care for them and
understand that she has the disease due to fate and it is
not that she has purposefully fallen sick. So nothing can
be done and they show more love to their wife.(IDI CC
woman). Some respondents felt cancer patients would
never be on the receiving end of stigma.
They will never talk bad about the person. In fact,
they will feel for the person that she has got such a
bad disease. When a woman is having this uterus
cancer then the information about that goes from one
woman to other by word of mouth. They will pity her
and tell her husband to take her to the doctor and give
her proper treatment.(FGD CC men)
Consequences of stigma
Disclosure management
Linked to fear of both isolation and verbal abuse were
descriptions of individuals and families actively trying to
manage and limit disclosure of a cancer diagnosis to
ward off gossip and other forms of stigma. Not only does
having to actively manage disclosure add stress, it also
limits the possibility of support from a broader range of
people.
Some people might feel ashamed to talk. They feel shy
to talk about the cancer their family is having. People
start gossiping that the person has got the disease at
such a young age and they scold them.(IDI CC
woman)
Shewilltelltoherhusband.Shewillnottellto
anyone elsethe woman will never tell her
problems to anyone outside. She feels that others
will think badly of her when she discusses such
problems with them. Hence, she will not tell to
anyone else.Shewont tell to her mother-in-law
fearing that she might talk bad about her.
(IDI CC healthcare provider)
Women with breast cancer and their caregivers con-
firmed this fear and talked about non-disclosure as a
coping mechanism to ward off stigma and protect one-
self: relatives would think that I have cancer and they
think bad about it, so I did not tell them. We have to
take care of ourselves.(IDI BC patient) Another protect-
ive strategy revolved around indicating something had
been wrong and was now resolved (e.g. lump has been
removed) and/or explaining visits to the hospital as be-
ing for other medical issues.
When I get ready to go the hospital they ask me
where are you going?I dont tell that I am going for
radiation treatment, I was telling them that I am
going for Physio therapy.(IDI BC patient)
We havent told anyone; we have told that she is
getting some treatment for cough. We dont share it
with anyone, nobody will help us so why should we
share. If we share others may not mingle with her nor
my children, thinking that they also might get itIf we
dont tell them that she has cancer everything will be
normal.(IDI BC caregiver)
Care Seeking
Fear of what might happen if a cancer diagnosis was re-
ceived was also discussed as a barrier to cervical cancer
screening. Sometimes they are afraid that other mem-
bers of the family will discriminate against her if she has
any problem. These could be the reason for them not to
go for uterus exam.(IDI CC community leader). Stigma
was also described as one cause for late presentation for
medical care, even when symptoms were present:
Some women hide the changes in their body. Some
fear that if the community comes to know about it
they will keep her separately, so to avoid all those
humiliation women dont discuss such things freely.
Only when it reaches incurable stage they will tell.
Usually village women wouldnt discuss freely their
body internal parts problem. They are afraid of the
later reaction from the society. They fear that
community might maintain some distance. They might
ill-treat her, so they hide itThey will keep suffering
silently until they cant bear it and when they disclose
it, it will be in irreparable stage. Even in hospitals they
will send them away by declaring it cannot be cured
anymore.(IDI CC community leader)
They are a little more aware, they know a breast
lump could be a cancer and usually come to us when
it is stage II and there are a group of people who know
that it could be something like a tumor or a cancer,
but they are afraid to go to a doctor because of the
stigma attached to the cancer and the diagnosis and
treatment implications. They are afraid of these things
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and they do not come to a doctor. Even educated
people, degree holders, teachers, they come in at a
later stage because they tend to sit on their tumor for
a longer duration for unknown fear. And I think it is
the fear of the diagnosis of cancer and the treatment
they want to avoid.(IDI BC healthcare provider)
Fear of disclosure through gossip and resultant stigma
was also linked to challenges with remaining adherent to
treatment.
But in villages they feel ashamed to tell it is
cancer. If some people are undergoing cancer
treatment, then they dont want to disclose. For the
same reason, they are not coming to the doctor.
Because of the taboo in the families and villages
being a small community, once a family has a
problem the whole village comes to know about it.
Each and every bit of it will be almost exposed.
Because of that part many women are not coming.
(IDI CC healthcare provider)
Discussion
At the outset, it is important to note that this ana-
lysis is based on data from two qualitative studies
with purposive samples of patients, providers and
community members in Karnataka, India. By delving
into the nature of stigma in Karnataka and offering
an in-depth, conceptually grounded description of the
drivers and manifestations of stigma, we have gone
beyond prior research that has primarily pointed to
its existence. Although our findings may not be
broadly generalizable, the analysis provides a founda-
tionforfuturequantitativeresearchontheprevalence
of cancer stigma and its associations with health out-
comes, as well as the development and testing of
stigma reduction interventions.
That cancer stigma is present and manifests in many
forms in these communities emerged across both the
cervical and breast cancer data sets. Respondents con-
sistently described acts of social and physical isolation
ranging from no longer inviting someone living with
cancer to family or community social events to physical
separation of the persons eating utensils, clothes, or
sleeping quarters to abandonment by spouse or family.
Verbal stigma ranging from gossip to outright abuse
was also described. Similar manifestations are described
by a study on breast cancer treatment and social stigma
in Thailand [41], a study on attitudes towards breast
cancer among South Asian women living the United
Kingdom [42], a study on quality of life of women with
breast cancer in India [43], a Nigerian study on the psy-
chosocial concerns of women living with breast and
cervical cancer [44], and a Kenyan study on stigma re-
lated to both cervical cancer and HIV [45].
Theprevalenceofstigmaandtheharmitinflictsled
to consistent descriptions of the anticipation (fear) of
stigma, both for the individual living with cancer and
their family. Respondents described how individuals
and families would attempt to contain disclosure of the
diagnosis to as few people as possible, even within fam-
ilies. While this has the advantage of warding off antici-
pated stigma, it also reduces the potential sources of
support for the individual and their family. Respon-
dents with breast cancer and their caregivers described
doing just this. One common strategy was to explain
visits to the hospital as being for other illnesses. This
same anticipation of stigma was also described as a rea-
son women did not go for cervical cancer screening
and put off seeking medical help even as symptoms
worsened. Breast cancer healthcare providers confirmed
this, noting that patients sometimes delayed seeking
treatment for fear of stigma. The negative effect of
stigma, whether anticipated, experienced or internal-
ized on delay or avoidance of screening, delayed entry
into care and adherence to treatment is well docu-
mented for other diseases, in particular HIV [1521].
In general, diseases that have one or more of the fol-
lowing characteristics lead to stigma: perceived as easily
transmitted or whose mode of transmission is not well
understood; acquisition thought to be under the control
of the individual, and; when the disease is visibly disfig-
uring and is assumed to lead to an untimely death.
What these data illuminate is that in these communities
all three of these factors prevail, therefore the strong
descriptions of stigma are perhaps unsurprising. Under-
lying reasons for cancer stigma emerging from the data
revolved around: fear of contagion, the belief that can-
cer is transmissible; belief in personal responsibility for
cancercancer as retribution for bad deeds in this life
or past, and; cancer as incurable and the inevitability of
an untimely death from it. Other studies have also
linked the stigmatization of breast and cervical cancer
to similar underlying factors. A Chinese survey found
that nurses attributed at least some blame to breast
and cervical cancer patients for their disease [46],
while a qualitative study on attitudes towards breast
cancer among South Asian women living in the UK
revealed the underlying reason for social and physical
isolation was fear of transmission [42]. Several studies
have noted the connection between cervical cancer
and STIs increases the stigmatization of the disease
[27, 4749]. For example, a qualitative Zambian study
found that women attribute cervical cancer to being
promiscuousor sleeping with many men which is
described as feeding into the stigmatization of cervical
cancer [48].
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Respondents most clearly articulated how fear of cas-
ual transmission of cancer led to the physical isolation of
a person living with cancer. Some recognized that cancer
was not transmissible in this manner and that the dis-
criminatory isolation behaviors were wrong, but noted
they continued to occur. Others described these discrim-
inatory behaviors while simultaneously declaring that pa-
tients living with cancer were not being treated poorly,
but were being well cared for. Physical separation behav-
iors were viewed as normal, as well as protective, and
something that the person living with cancer themselves
would engage in to protect others. As this respondent
explained: That [isolation] should not be done actually.
But even without their knowledge, they would have
started to behave that way. They do not do purposefully.
(IDI CC screened women) Studies on HIV stigma have
found similar contradictions. Families describe how they
are treating their family member living with HIV in the
best way possible and then go on to describe physical
isolation occurring as part of that care [5053]. While
the intention is not to harm, the outcome is often
damaging.
Therefore, one key recommendation for programmatic
action based on this analysis is simply to implement pro-
grams that create awareness of what stigma is. What has
been learnt in efforts to reduce HIV stigma is that as
stigma is often unintentional, a key strategy to address
stigma is to simply create awareness of what stigma is,
in very concrete terms how it manifests in actions and
verbally, as well as its consequences [54]. A second and
similar recommendation to reduce stigma is to address
more clearly and consistently the misconceptions around
transmission and, in particular, the specific fears and
imagined pathways of transmission [39, 55]. Thirdly, and
also tied to the awareness and misconceptions recom-
mendations, is addressing negative beliefs and the
resulting blame that cancer is a punishment for mis-
deeds either in the current or past life [39, 56, 57].
Lastly, responses to cancer stigma should leverage sup-
portive family or community members. A narrative of
family and community support emerged in the data
alongside the presence of prevalent and harmful stigma.
This support narrative indicates a strong foundation on
which to build stigma-reduction efforts.
Conclusions
The respondents in these two studies clearly articulated
that cancer stigma is present in their lives and commu-
nities, is a feared outcome of a cancer diagnosis and a
barrier to screening, early diagnosis and treatment seek-
ing for women with symptoms. While further research
on cancer stigma is needed, this exploration of the driv-
ing factors and stigma manifestations provides insights
for future programmatic efforts to reduce stigma and
improve access to information, screening and treatment.
Notably, the causes of cancer stigma described by re-
spondents are similar to what drives stigma around
other diseases such as HIV. A growing body of work on
HIV stigma measurement and reduction may provide
useful lessons in thinking about how to better under-
stand and respond to cancer stigma. As the experiences
in addressing HIV stigma are beginning to demonstrate,
measuring and understanding both the underlying
causes of stigma and the manifestations has the potential
to result in evidence-based responses that can have sub-
stantial beneficial health impacts.
Additional files
Additional file 1: Breast Cancer Interview Guides. Description: The
interview guides used in the breast cancer study. (DOCX 34 kb)
Additional file 2: Cervical Cancer Interview Guides. Description: The in-
depth interview and focus-group discussion guides used in the cervical
cancer study. (DOCX 61 kb)
Abbreviations
BC: Breast Cancer; CC: Cervical Cancer; CCI: Cancer Care India; FGD: Focus
group discussion; HPV: Human papillomavirus; IDI: In-depth interview;
LMICs: Low and middle income countries; STI: Sexually transmitted infection
Acknowledgements
This study would not have been possible without the generosity of all the
participants in both studies who gave of their time to share their insights.
We gratefully acknowledge the efforts of Meera Govendaraja and Subhadra
Pandu who conducted many of the interviews. We would also like to thank
the staff of the SJMCH Oncology Center and Cancer Care India for their
support.
Funding
The breast cancer study was funded by the National Cancer Institute of the
National Institutes of Health under award number R01CA172542. The contents
of this manuscript are solely the responsibility of the authors and do not
necessarily represent the official views of the National Institutes of Health.
Funding for the cervical cancer study was provided by RTI International
through an internal organizational grand challenge research funding
mechanism.
Availability of data and materials
Due to confidentiality agreements, the data and associated documentation
is not fully publicly available. However, data and associated documentation
is available to users under a data-sharing agreement that provides for (1) a
commitment to use the data only for research purposes and not to
identify an individual participant, (2) a commitment to secure the data
using appropriate computer technology, and (3) a commitment to destroy or
return the data after analyses are completed. These data will be made available
only after the primary qualitative and quantitative analyses are accepted for
publication.
Authorscontributions
LN provided technical oversight to the design and analysis of the cervical
cancer study and the stigma analysis of breast cancer data and led on
writing the manuscript. SK led the implementation of both studies, oversaw
the data management and analysis and supported write-up. ST coded and
analyzed breast cancer data and supported write-up. MS coded and analyzed
cervical cancer data and supported write-up. All authors have read and
approved the final manuscript.
Nyblade et al. BMC Women's Health (2017) 17:58 Page 13 of 15
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Ethics approval and consent to participate
Both studies received ethics approval from the Office of Research Protection,
Institutional Review Board, RTI International (Cervical Cancer Study, approval #
13441; Breast Cancer Study, approval # 13264). The breast cancer study received
additional approval from St. Johns National Academy of Health Sciences,
Institutional E thics Committee, (Approval # 10/2013). For both studies,
participants provided written consent prior to participating in either study.
Consent for publication
As part of the consent forms, respondents agreed that quotes could be
published without personal identifiers.
Competing interests
The authors declare that they have no competing interests.
PublishersNote
Springer Nature remains neutral with regard to jurisdictional claims in
published maps and institutional affiliations.
Author details
1
RTI International, 701 13th ST NW, Suite, Washington, DC 750, USA.
2
Research Triangle Institute Global India Private Limited, 21 Nehru Place,
Paharpur Business Centre, Suite no. 610, Nehru Place, India.
Received: 13 July 2016 Accepted: 19 July 2017
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Supplementary resources (2)

... So at that ((AB = (Stigma) AND AB = (Cancer)) AND (AB = (percept*) OR AB = (perceiv*)) AND (AB = (qualitative*) OR AB = (thematic analysis) OR AB = (Grounded theory) OR AB = (Content analysis) OR AB = (phenomen*))): 133 (19). Moreover, a participant in a study by Nyblade et al admitted, "Life is over, there is nothing after cancer" (18). Rosman reported that most patients believed that hair loss caused by chemotherapy is a symbol of the loss of vitality, physical strength, and health. ...
... They have to send the children to school. When all Self-perceived stigma in cancer patients (18). Hasan Shiri et al also acknowledged that cancer has been one of the diseases that kill people very quickly since ancient times. ...
... In other words, helplessness and the perception of being a victim is not a kind of feeling, but a (mental) belief that the patient cannot do anything and cannot face the events. A participant in Nyblade and colleagues' study) stated, "Patients feel helpless and they assume that they can no longer fulfill the expected Hiding the disease as a coping strategy in social interactions Acceptability of baldness for men in the community roles in the family and society because they are too ill to continue working" (18). Besides, during the disease process, most patients have to undergo multiple medical treatments (surgery, chemotherapy, radiation therapy, etc) and cannot play their normal role in the network of interpersonal relationships, which is an inherent conflict. ...
Article
Background: An analysis of cancer stigma and the factors affecting it can significantly affect patients’ survival rate, willingness to receive treatment, coping strategies, and quality of life. To this end, the present study investigated the factors affecting selfperceived stigma in cancer patients. Methods: The present study adopted a meta-synthesis approach. The inclusion criteria were qualitative studies, relevant keywords in the title and abstract, and full-text articles published in English from 2000 to 2022 in Web of Science, PubMed, and Google Scholar databases. After searching and screening the titles, abstracts, and methodologies, 419 articles were extracted. Then, the duplicate articles were removed and the data from the 11 remaining articles that met the inclusion criteria were used in data analysis. Results: The findings revealed the factors affecting cancer stigma include substantive factors (cancer symptoms reflecting death and nothingness and the visible signs of cancer reminiscent of isolation and loneliness) and moderating factors (the role of false beliefs and misconceptions, fear of public judgment, and the role of the media as a promoter of stigma). The data also showed that false beliefs and misconceptions play the most important role in cancer stigma. Conclusion: Taking into account factors affecting cancer stigma can contribute to developing an effective strategy to strengthen the psychological support for cancer patients and pave the way for improving optimal and effective management of the public health system in dealing with cancer.
... This might be due to the fact that cervical examination was taken as a proxy for cervical cancer screening [19]. Lack of knowledge, fear of unfavourable test results, the stigma associated with cancer in society, the perceived inevitability of death after the cancer diagnosis, restricted access to healthcare facilities, lack of health insurance, and embarrassment of displaying body parts to male physicians are key barriers of cervical cancer screening coverage in India [40]. The health of rural women and their access to health facilities is compromised due to socio-cultural, economic and environmental factors [41]. ...
... The health of rural women and their access to health facilities is compromised due to socio-cultural, economic and environmental factors [41]. Previous studies found that awareness about symptoms, the possibility of early detection, available tests and the possibility of the cure of the disease among rural women was low, and the main barriers faced by women were cognitive barriers [40]. Multivariable logistic regression revealed that the odds of having higher cervical cancer screening coverage were associated with an increase in the age education and age of first intercourse. ...
Article
Full-text available
Introduction Existing evidence suggests a lower uptake of cervical cancer screening among Indian women. Coverage is lower in rural than urban women, but such disparities are less explored. So, the present study was conducted to explore the self-reported coverage of cervical cancer screening in urban and rural areas stratified by socio-demographic characteristics, determine the spatial patterns and identify any regional variations, ascertain the factors contributing to urban-rural disparities and those influencing the likelihood of screening among women aged 30–49 years factors residing in urban, rural, and overall Indian settings. Methods We did a secondary analysis of the fifth round of the National Family Health Survey in India (2019-21) data with a sample size of 3,48,882 women. The coverage of cervical cancer screening was estimated using sampling weights. Urban-rural differences were compared using the chi-square test. Spatial patterns were analysed using aggregated district-level data, and the contribution of different independent variables to the urban-rural disparities was estimated using multivariate decomposition analysis. Multivariable logistic regression was conducted using STATA 17 to obtain the significant factors of reported screening in urban and rural areas. Results The nationwide coverage of cervical cancer screening was 2.0% (95% CI: 1.9-2.0). The urban (2.4%; 2.3–2.5) participants had higher screening coverage than their rural (1.8%; 1.7–1.8) counterparts. Moran’s I statistic confirmed the presence of spatial dependence and geographical gradient. Decomposition analysis depicted small urban-rural differences in the screening coverage of 0.60% (0.4–0.8). Endowment and coefficient contributed to 88.15% and 11.85% of the disparities. Compositional changes were contributed majorly by regional differences, low education, scheduled tribes, and having living children > 2. Higher odds of having screening were associated with older age (AOR 1.45, 95% CI: 1.03–1.28), higher education (1.32; 1.13–1.55), higher age of first intercourse (1.60; 1.43–1.79), married (1.25; 1.08–1.45) and diabetic (1.39; 1.17–1.65) women, and those from South India (6.76; 5.90–7.75). The odds were lower among Muslims, scheduled tribes and participants using hormonal contraceptives. Conclusion There are significant urban-rural disparities in cervical cancer screening uptake that can be attributed to regional variation, educational inequalities, tribal groups, socio-economic inequalities and parity, necessitating the need to comprehensively design tailor-made advocacy initiatives and simultaneously address the broader determinants of health.
... The high incidence of this cancer in South Africa and other developing countries can be attributed to socio-economic factors (poverty, poor hygiene) and cultural norms (early or polygamous marriages, monogamous marriages with husbands engaging in extramarital affairs) [3]. Early sexual debut and multiple sexual partnerships are leading causes of Human Papillomavirus (HPV) infection, causally associated with cervical cancer [4] and partially responsible for some of the stigma associated with this cancer [5,6]. This stigma can result in late screening and/ or diagnosis of this disease [7], which may warrant brachytherapy and chemotherapy containing cisplatin [8]. ...
Chapter
Full-text available
Cisplatin chemotherapy, a standard treatment for cervical cancer, may result in ototoxicity. Given the paucity of information on ototoxicity amongst cervical cancer patients, this chapter describes the findings of a study that investigated the extent of cisplatin-associated ototoxicity and the feasibility of an ototoxicity monitoring programme (OMP) amongst this cohort. This study, conducted at a hospital in South Africa, revealed that, while the audiologist was considered a part of the oncology team, provision for ototoxicity monitoring in the chemotherapy protocols was not evident, nor was any OMP in place. Prospective recruitment of cervical cancer cases and regular audiological assessments revealed a 98% incidence of ototoxicity (cumulative cisplatin dose 150 mg/m2). HIV seropositivity (53.7%) was significantly associated with the NCI-CTCAE Grading Scale at 3- (p = 0.022) and 6-month (p = 0.023) post-treatment. Feasibility assessment revealed that key stakeholders found the OMP beneficial. Costs to the service provider (equipment, personnel) and patient (transport, daily loss of income) were paramount to successfully implementing and continuing the programme. This study highlights cisplatin’s ototoxic effect and provides clear evidence for the need for an OMP. Through meaningful engagements with, and considerations from, patients and service providers regarding planning, delineation of responsibilities, and cost implications, such a programme is feasible.
... [8] A study from Karnataka reported that women deferred screening for breast and cervical cancer secondary to stigma associated with fear of causal transmission, inevitability of disability, and death, assuming personal responsibilities for the diagnosis of cancer. [30] These cognitions indirectly deny the patient a chance for early diagnosis and treatment, which in turn can affect the quality of life. ...
Article
Background Breast and cervical cancers pose significant health challenges for Indian women, impacting their psychological well-being and quality of life. Aim To compare psychiatric morbidity, explore coping strategies, and evaluate quality of life among women with these cancers. Materials and Methods A cross-sectional observational study among women aged 18 years and above attending a tertiary care hospital Oncology unit diagnosed first time with breast or cervical cancer, providing informed consent, were recruited by purposive sampling between September 2019 and August 2020. Using a semi-structured questionnaire, sociodemographic and clinical details were collected. Participants were interviewed using Mini International Neuropsychiatric Interview (MINI) version 6, Hamilton Depression Rating Scale, Hamilton Anxiety Rating Scale, Coping Checklist, and WHOQOL-BREF. Descriptive and inferential statistics were used. A P value of < 0.05 was considered significant. Results Sixty-eight participants (34 in each group) were recruited from a tertiary care hospital’s Oncology unit between September 2019 and August 2020. Comorbid psychiatric illnesses were found in 41.2% of cervical and 32.4% of breast cancer participants. Major depressive disorder (20.6% cervical; 8.8% breast) and generalized anxiety disorder (8.8% each) were common. Emotion-focused coping was prevalent, while negative distraction was least used. Quality of life was lowest in social relationships, physical health, and psychological health domains, with no significant intergroup differences. Conclusion The high prevalence of psychiatric morbidities, poor coping strategies, and impaired quality of life imply that healthcare providers need to be culturally sensitive and integrate mental health screening and support services into routine cancer care.
... Stigma related to cancer, in India, is apparent in the forms of social isolation (within the home or community), gossip, verbal abuse and reduced marriage prospects (for self or children). Physical separation within the home, such as separate living, eating places and washing of utensils, clothes etc. Nyblade L et al in their qualitative research found that the three major themes that drive cancer stigma are fear of transmission of cancer, personal responsibility for having caused cancer, and fatality of a cancer diagnosis 18 . Cancer stigma was evidenced as lived experiences like verbal abuse or isolation and fear of revealing diagnosis in anticipation of stigma. ...
Article
Full-text available
Introduction: The incidence of various types of cancers in India are set to increase thereby putting an increased burden on the health system. There is a need for people to know sufficiently about cancer, the various types, the risk factors, the early symptoms and signs etc. so that they can come for professional diagnosis early. However, the fear of cancer prevents screening, early diagnosis and prompt treatment. Methodology: A qualitative study was done about cancer awareness among women in the rural areas using qualitative methods like Focus Group Discussions (FGD), In Depth interviews and Key Informant interviews. Results: Incurability of cancer, stigma, fear of cancer, need for support – physical, emotional & spiritual, lack of discussion in the community, causes of cancer, knowledge about cancer and personal experience with cancer are the themes identified in this study. Discussion: Stigma concerning cancer is a challenge to cancer awareness and control activities in any society. “Cancer fear” is any fear, anxiety, or worry related to cancer, including causes or consequences of cancer such as fear of treatment for cancer. Social support is necessary for physical adaptation, wellbeing and emotional adjustment in people suffering with cancer. Conclusion: This study reveals that knowledge about cancer in rural women is low and there are many misconceptions. There is reluctance to discuss about it due to fear and stigma. Recommendations: Following appropriate cancer education programmes with a stress on rural populations, prevention and screening programmes must be taken up urgently. Healthcare workers and volunteers in rural health care must be given necessary training to be able to give adequate cancer awareness, addressing key misconceptions.
... Stigma related to cancer, in India, is apparent in the forms of social isolation (within the home or community), gossip, verbal abuse and reduced marriage prospects (for self or children). Physical separation within the home, such as separate living, eating places and washing of utensils, clothes etc. Nyblade L et al in their qualitative research found that the three major themes that drive cancer stigma are fear of transmission of cancer, personal responsibility for having caused cancer, and fatality of a cancer diagnosis 18 . Cancer stigma was evidenced as lived experiences like verbal abuse or isolation and fear of revealing diagnosis in anticipation of stigma. ...
Article
Full-text available
Introduction: The incidence of various types of cancers in India are set to increase thereby putting an increased burden on the health system. There is a need for people to know sufficiently about cancer, the various types, the risk factors, the early symptoms and signs etc. so that they can come for professional diagnosis early. However, the fear of cancer prevents screening, early diagnosis and prompt treatment.
... The causes for low oral cancer screening coverage has been proposed to be socio-cultural factors and the stigma associated with cancer 8 . Women, especially, face a stigma related to cancer diagnosis which stems from fear of contagion, a belief in personal responsibility for cancer and a lack of knowledge about the risk factors which led to the cancer 17,18 . It was seen that the southern states of India have reported higher cancer screening coverage rates. ...
Article
Full-text available
Oral cancer is the second most prevalent cancer in India and 5% of all cancers in women is contributed by oral cancer. In spite of being a part of national programme, the screening coverage rates remain low. Studies have indicated that the societal status of women and their empowerment plays a role in screening coverage for cancer. The objective of the current study is to estimate the coverage of oral cancer screening among Indian women within reproductive age-group across Indian states and union territories (UTs), to explore the relationship of socioeconomic status (SES) and women empower status (WES) with oral cancer screening coverage across Indian states and union territories (UT). Data from the fifth round of the nationally representative cross-sectional survey (National Family Health Survey, NFHS-2019–2021) was used in the present study with 3,48,882 individuals being included in the final analysis. We have cross-tabulated SES and WES composite scores with the Dimension Index (DI) of screening and categorised states and UTs into low, middle and high. We have represented these values over the Indian map. The interaction among these was graphically represented by a bubble plot. Further, we estimated the association of each indicator of SES and WES with screening coverage using multivariable logistic regression. The national coverage of oral cancer screening among women of reproductive age was 0.77% with Andhra Pradesh (7%) and Andaman and Nicobar Islands (10%) recording the highest screening coverage. Despite having high SES and WES scores, Madhya Pradesh and Uttar Pradesh, the screening (DI) was low. States with both high women empowerment status and high socioeconomic status showed high oral cancer screening uptake but the trend was not universal. Still, there were variations in the association among the states. The increased screening was significantly associated with higher access to improved sanitary facility (76%) and clean fuel for cooking (44%). Socio-economic status is an important precursor for better oral cancer screening coverage but women empowerment status did not always translate into good cancer screening uptake. Deep-rooted socio-cultural constructs and stigma associated with cancer and its implications may play a role. Implementation research for better uptake of oral cancer screening coverage is required. Supplementary Information The online version contains supplementary material available at 10.1038/s41598-024-80346-w.
Article
Asian Society of Mastology (ASOMA) is a multidisciplinary multinational group of experts engaged in the education and research on various afflictions of mammary gland. It includes surgeons, medical and radiation oncologists, pathologist, radiologists, plastic surgeons and breast care support groups. ASOMA has published several ‘ASOMA Guides’ on important aspects of breast care suitable for patients in Asia and Africa. The present ASOMA guide on locally advanced breast cancer deals with the initial workup and management of patients presenting with advanced breast cancer. On initial presentation, we can only state the diagnosis as ‘Advanced breast cancer’, i.e. T3, T4, N2 and N3 M?, if no distant metastases are evident on clinical examination. Once histological diagnosis is ascertained and results of ‘metastatic work-up’ are ready, we can make a final diagnosis of either locally advanced breast cancer (LABC), if no metastasis is detected, or metastatic breast cancer (MBC) if distant spread to the lungs, liver, brain and bones is picked up.
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Since the early years of the human immunodeficiency virus (HIV) epidemic, stigma has been understood to be a major barrier to successful HIV prevention, care, and treatment. This article highlights findings from more than 10 studies in Asia, Africa, and Latin America—conducted from 1997 through 2007 as part of the Horizons program—that have contributed to clarifying the relationship between stigma and HIV, determining how best to measure stigma among varied populations, and designing and evaluating the impact of stigma reduction-focused program strategies. Studies showed significant associations between HIV-related stigma and less use of voluntary counseling and testing, less willingness to disclose test results, and incorrect knowledge about transmission. Programmatic lessons learned included how to assist institutions with recognizing stigma, the importance of confronting both fears of contagion and negative social judgments, and how best to engage people living with HIV in programs. The portfolio of work reveals the potential and importance of directly addressing stigma reduction in HIV programs.
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Background Several stigma reduction intervention strategies have been developed and tested for effectiveness in terms of increasing human immunodeficiency virus (HIV) test uptake. These strategies have been more effective in some contexts and less effective in others. Individual factors, such as lack of knowledge and fear of disclosure, and social-contextual factors, such as poverty and illiteracy, might influence the effect of stigma reduction intervention strategies on HIV test uptake in low- and middle-income countries. So far, it is not clearly known how the stigma reduction intervention strategies interact with these contextual factors to increase HIV test uptake. Therefore, we will conduct a review that will synthesize existing studies on stigma reduction intervention strategies to increase HIV test uptake to better understand the mechanisms underlying this process in low- and middle-income countries. Methods A realist review will be conducted to unpack context-mechanism-outcome configurations of the effect of stigma reduction intervention strategies on HIV test uptake. Based on a scoping review, we developed a preliminary theoretical framework outlining a potential mechanism of how the intervention strategies influence HIV test uptake. Our realist synthesis will be used to refine the preliminary theoretical framework to better reflect mechanisms that are supported by existing evidence. Journal articles and grey literature will be searched following a purposeful sampling strategy. Data will be extracted and tested against the preliminary theoretical framework. Data synthesis and analysis will be performed in five steps: organizing extracted data into evidence tables, theming, formulating chains of inference from the identified themes, linking the chains of inference and developing generative mechanisms, and refining the framework. Discussion This will be the first realist review that offers both a quantitative and a qualitative exploration of the available evidence to develop and propose a theoretical framework that explains why and how HIV stigma reduction intervention strategies influence HIV test uptake in low- and middle-income countries. Our theoretical framework is meant to provide guidance to program managers on identifying the most effective stigma reduction intervention strategies to increase HIV test uptake. We also include advice on how to effectively implement these strategies to reduce the rate of HIV transmission. Systematic review registration PROSPERO CRD42015023687
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With much of the focus on the “risk” groups, families have often been less studied in HIV research. Further, because of a focus on the aetiology and epidemiology of HIV, the social impacts associated with HIV on families and neighbours are sometimes overlooked. This study examined parental experiences of stigma and discrimination while living with HIV within a family context in Bangladesh. A qualitative research design using a grounded theory approach was used for this research. Data was collected through in-depth interviews with 19 HIV-positive parents, recruited with the support of two self-help groups of HIV-positive people, in two settings namely Khulna and Dhaka in Bangladesh. The findings indicate that HIV-positive parents held the view that they continue to experience significant stigma and their narratives clearly show how this affected them and their children. A range of informal practices were enacted in everyday contexts by extended family and community members to identify, demarcate and limit the social interaction of HIV-positive parents. Parents highlighted a number of factors including negative thoughts and behaviours, rejection, isolation and derogatory remarks as manifestations of stigma and discrimination, impacting upon them and their children because of their association with HIV. 
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