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


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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
, Melissa Stockton
, Sandra Travasso
and Suneeta Krishnan
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
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:
RTI International, 701 13th ST NW, Suite, Washington, DC 750, USA
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International License (, 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
( 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
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
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]
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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
- 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
Primary caregivers 22 Women 4 43
Screened women 6 6
Healthcare providers 10 Husbands 2 21
Unexposed Villages
Total 59 Younger Women 4 38
Husbands 2 18
Healthcare Providers 8
Community Leaders 10
Total 12 24 147
Data Analysis software NVivo 9.2 NVivo 9.2 and Atlas Ti
Joint interviews with two or more respondents
Exposed: where CCI implemented outreach programs
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
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.
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
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
Table 3 Questionnaire guide details
Breast Cancer Study Cervical Cancer Study
Knowledge and awareness about breast cancer
- Symptoms
- Experience seeking care
- Experience receiving diagnosis
- Personal and family reaction
- Treatment experience
- Side effects
Perceptions of care
Financial impact
Family and social relationships
- Family and social support
- Changes in relationships
- 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
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
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
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
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.
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
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
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
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,
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
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
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
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
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)
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-
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].
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
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.
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)
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
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
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
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
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
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
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.
Springer Nature remains neutral with regard to jurisdictional claims in
published maps and institutional affiliations.
Author details
RTI International, 701 13th ST NW, Suite, Washington, DC 750, USA.
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)

... Breast cancer, like other cancers, could result in a sudden deterioration of health or acute sufferings as a consequence of the treatment itself, giving rise to intense and time-consuming caregiving (Benyo et al., 2022;Bhattacharya & Chatterjee, 2020;Frambes et al., 2018; RESEARCH ARTICLE Maree et al., 2018). Additionally, in low resource-settings, with poor healthcare infrastructure, the chance of out-ofpocket expenditure is high and this coupled with factors such as stigma and a concern of increased mortality gives rise to a fear of the disease further burdening the caregiver (Alexander et al., 2019;Kusi et al., 2020;Nyblade et al., 2017). ...
... Caregiving in breast cancer is perceived differently by the survivors and their caregivers and understanding these nuances can help identify specific challenges, thereby facilitating customized interventions (Adelman et al., 2014). Indian studies on breast cancer caregiving burden have limited themselves to standalone factors such as stigma or financial burden (Nyblade et al., 2017;Alexander et al., 2019) and not explored the complexity of the concept. Most of the qualitative studies addressing this theme are restricted to formal caregiver experiences (Daniel et al., 2022;Fereydooni et al., 2022). ...
... There is a perception in the Indian society that cancer is incurable due to which caregivers experience a constant fear of losing the loved one. This sentiment is echoed by some of the studies conducted in India (Nyblade et al., 2017) and elsewhere (Hashemi-Ghasemabadi et al., 2016;Segrin et al., 2018). ...
Full-text available
Background: This study was conducted to explore the prevailing perceptions and experiences of caregiving burden among informal caregivers of women living with breast cancer in South India. Methods: In-depth interviews were conducted among breast cancer care-receivers (n=35) and their informal caregivers (n=39) and a thematic analysis was used to analyze the data. Informal caregiver in the context of this study was defined as one who takes up the responsibility of an informal caregiving role, and were either self-identified or acknowledged by the care-receivers. Results: Four main inductive themes in the domains of: emotional culpability, financial and workplace liability, psychosocial affliction, physical strain and health system demand were identified, that were associated with caregiver burden. Conclusion: Informal caregivers form an integral part of the cancer care continuum in India. It is recommended to factor in the identified themes while developing a caregiver needs assessment model in the context of caring for breast cancer patients in the Indian setting.
... Cancer stigma is negatively associated with cervical cancer screening uptake around the world [14][15][16][17]. Psychological and emotional barriers like shyness, embarrassment, defenselessness, and discomfort with exposing their body and fear of the result of the test has prevented women from participating in cervical cancer screening. ...
... Psychological and emotional barriers like shyness, embarrassment, defenselessness, and discomfort with exposing their body and fear of the result of the test has prevented women from participating in cervical cancer screening. In addition, women consider screening tests useless because of the belief that cervical cancer is unpreventable and incurable and has a high economic burden [11,14,18]. In Nepal, only 8 percent of the women aged 30-49 years were ever screened for cervical cancer in 2019 [19]. ...
... CASS has 25 items assessing six domains: (a) awkwardness: items measured how much people feel comfortable around someone with cancer, (b) severity: items measure how severe the consequences of a cancer diagnosis are expected to be and the likelihood of recovery from cancer, (c)avoidance: assess how much people avoid cancer patient and maintain physical distance with them, (d) personal responsibility: determine how a person's actions are considered to have contributed to their cancer, (e) policy opposition: items assess how much government and public are responsible towards care and treatment of cancer patients and (f) financial discrimination: measure how much cancer patients are expected to be benefited from bank and insurance services. The participants' responses were recorded on a 6-point Likert scale ('disagree strongly' to 'agree strongly), higher score indicating higher stigma [14]. We calculated mean scores for each of the domains after reversing the score of 5 items that indicated positive statements from the domains policy opposition and awkwardness [14,26,27]. ...
Full-text available
Background: Cervical cancer ranks as the most common cancer among Nepalese women with a high incidence and mortality. Despite evidence that effective screening programs reduce disease burden, screening services are under-utilized. Cancer stigma can be a major barrier to cervical cancer screening uptake among Nepalese women. Objectives: This study assessed the association between cancer stigma and cervical cancer screening uptake among women residing in semi-urban areas of Kavrepalanchok district (Dhulikhel and Banepa), Nepal. Methods: We conducted a cross-sectional study among 426 women aged 30-60 years using telephone interview method from 15th June to 15th October 2021. A validated Cancer Stigma Scale (CASS) was used to measure cancer stigma and categorized women as presence of cancer stigma if the mean total score was greater than three. We obtained information on cervical cancer screening uptake through self-reported responses. Univariable and multivariable logistic regression were performed to assess the association between cancer stigma and cervical cancer screening uptake. We adjusted socio-demographic: age, ethnicity, occupation, religion and education, and reproductive health variables: parity, family planning user, age of menarche and age at first sexual intercourse during multivariable logistic regression. Results: Twenty-three percent of women had cancer stigma and 27 percent reported that they had ever been screened for cervical cancer. The odds of being screened was 0.23 times lower among women who had stigma compared to those who had no stigma (95% CI: 0.11-0.49) after adjusting for confounders: age, ethnicity, occupation, religion, education, parity, contraceptive use, age of menarche and age at first sexual intercourse. Conclusion: Women residing in semi-urban areas of Nepal and had cancer stigma were less likely to have been screened for cervical cancer. De-stigmatizing interventions may alleviate cancer stigma and contribute to higher uptake of cervical cancer screening.
... Across common cancers, though tobacco-related cancer risks are relatively well known, there is a lower awareness of how other factors may impact cancer risk including family history, diet, radiation, pollution and hygiene [29]. Low cancer awareness has also fueled misconceptions and inappropriate beliefs that cancer is incurable, transmissible and a form of divine punishment [30]. Female-centered cancers of the breast and cervix are also often stigmatized particularly in rural communities where they manifest as forms of public humiliation, abuse, social isolation, loss of occupation and marital issues [30]. ...
... Low cancer awareness has also fueled misconceptions and inappropriate beliefs that cancer is incurable, transmissible and a form of divine punishment [30]. Female-centered cancers of the breast and cervix are also often stigmatized particularly in rural communities where they manifest as forms of public humiliation, abuse, social isolation, loss of occupation and marital issues [30]. These sociocultural factors in turn may play an adverse role in discouraging some patients from seeking or pursuing screening or preventative measures with the healthcare system. ...
Cancer is one of the leading causes of morbidity and mortality in India. Despite recent medical and technological advances, the cancer burden in India remains high and continues to rise. Moreover, substantial regional disparities in cancer incidence and access to essential medical resources exist throughout the country. While innovative and effective cancer therapies hold promise for improving patient outcomes, several barriers hinder their development and utilization in India. Here we provide an overview of these barriers, including challenges related to patient awareness, inadequate infrastructure, scarcity of trained oncology professionals, and the high cost of cancer care. Furthermore, we discuss the limited availability of cancer clinical trials in the country, along with an examination of potential avenues to enhance cancer care in India. By confronting these hurdles head-on and implementing innovative, pragmatic solutions, we take an indispensable step toward a future where every cancer patient in the country can access quality care.
... Factors that can negatively impact patients' motivational states include social stigma and cognitive burden. Social stigma can lead patients to drop out of treatment, especially when receiving CHW home visits in communities where diabetes is stigmatized (Busza et al. 2018, Nyblade et al. 2017. ...
... The use of stigmatizing phrases to describe people with diabetes has been reported in several countries and includes terms such as "sick and disabled", "contagious", "self-inflicting", among others (Abdoli et al. 2018) -a depiction of the stigma that can lead patients to refuse CHW home visits (Busza et al. 2018, Nyblade et al. 2017. Therefore, CHW programs must model patient health outcomes and account for patient enrollment behavior to determine the optimal timing and type of visit to provide to each patient so that programs most effectively use their limited resources. ...
Diabetes is a global health priority, especially in low- and-middle-income countries, where over 50% of premature deaths are attributed to high blood glucose. Several studies have demonstrated the feasibility of using Community Health Worker (CHW) programs to provide affordable and culturally tailored solutions for early detection and management of diabetes. Yet, scalable models to design and implement CHW programs while accounting for screening, management, and patient enrollment decisions have not been proposed. We introduce an optimization framework to determine personalized CHW visits that maximize glycemic control at a community-level. Our framework explicitly models the trade-off between screening new patients and providing management visits to individuals who are already enrolled in treatment. We account for patients' motivational states, which affect their decisions to enroll or drop out of treatment and, therefore, the effectiveness of the intervention. We incorporate these decisions by modeling patients as utility-maximizing agents within a bi-level provider problem that we solve using approximate dynamic programming. By estimating patients' health and motivational states, our model builds visit plans that account for patients' tradeoffs when deciding to enroll in treatment, leading to reduced dropout rates and improved resource allocation. We apply our approach to generate CHW visit plans using operational data from a social enterprise serving low-income neighborhoods in urban areas of India. Through extensive simulation experiments, we find that our framework requires up to 73.4% less capacity than the best naive policy to achieve the same performance in terms of glycemic control. Our experiments also show that our solution algorithm can improve upon naive policies by up to 124.5% using the same CHW capacity.
... This has been concurred by the paper of Justine et al. [23], wherein the severity of a cancer diagnosis came at the top with the highest level of agreement whereas 'avoiding someone with cancer' showed the least agreement. Consequently, in a qualitative study done by Nyblade et al. [30], three main components emerged for cancer stigma driving manifestations such as fear of casual transmission of cancer, personal accountability for having caused cancer, and belief in and fear of the certainty of disability and death with a cancer diagnosis. Stigma causes negative effects on patients' mental health which may have been a barrier to screening, early diagnosis, and treatment. ...
... Te main reason given by interviewees for not disclosing this to these patients was the pressure of relatives on caregivers to prevent hopelessness and discontinuation of treatment. Tis reason is also consistent with a study performed in India, which reported that the majority of caregivers preferred nondisclosure of a cancer diagnosis and prognosis to their patients [48]. Poor disclosure of a cancer diagnosis in developing countries may be associated with poor educational attainment [47], preference for traditional medicine, old age, and having other chronic illnesses [49]. ...
Full-text available
The provision of psychosocial services has a substantial impact on cancer care by reducing emotional distress and improving both the quality of life and survival of patients, but the availability and utilization of such services have not been well studied in developing countries, particularly, Ethiopia. Therefore, we explored the types of psychosocial services available for breast cancer patients in Addis Ababa, Ethiopia. A mixed method study was conducted using a cross-sectional survey involving 428 breast cancer patients, followed by a qualitative study. A total of nine in-depth interviews (IDIs) were conducted with four breast cancer patients and fve key informants using two separate interview guides. In addition to descriptive statistics, logistic regression was performed to identify factors associated with the provision of psychosocial services. Thematic analysis was used for the qualitative data, using NVivo 12 plus software. Only 47 (11.1%) patients received psychosocial services in the form of counselling, emotional support, or information provision. Health professionals reportedly provided such services along with their routine activities, and patients predominantly received social/emotional support from family members, friends, and colleagues. There were no well-structured counselling services, emotional support, or group discussion sessions for breast cancer patients in these health facilities. The main reasons for not providing these services were high patient fow/workload, inadequate space, lack of training, and not having qualified professionals to organise and deliver psychosocial services in these hospitals. Only one in ten breast cancer patients received psychosocial services from health professionals, and the services were not delivered in a structured way. Therefore, psychosocial services should be integrated in both private and government health facilities in Ethiopia.
... By constructing a structural equation model (Figure 1), we further explain the path of stigma affecting QOL: the direct effect of stigma on QOL is not significant, and the way of influence is mainly through indirect effects. Similar to previous studies, there was a negative correlation between stigma and QOL (4, 10), and stigma prevented patients from seeking medical help and adhering to treatment (10,30). For cancer patients, it is an obstacle to maintaining health-related QOL (31,32). ...
Full-text available
Purpose Stigma is common in patients with breast cancer after surgery, which has a negative impact on the quality of life (QOL). This study aimed to investigate the QOL of breast cancer patients after surgery and to analyze the multiple chains mediating effects of self-disclosure and social support between stigma and QOL. Methods A total 292 patients of breast cancer patients after operation were recruited in this study. A questionnaire survey was conducted using the general information questionnaire, the consumer experiences of stigma questionnaire (CESQ), the distress disclosure index(DDI), the perceived social support scale(PSSS), and the functional assessment of cancer therapy-breast(FACT-B). Path analysis was conducted to test the hypothesized serial multiple mediation model. Results The total scores of stigma, self-disclosure, social support and QOL were 15 (10 ~ 22), 39 (31 ~ 46), 58 (50 ~ 67) and 88 (74 ~ 104) respectively. QOL of breast cancer patients after the operation was negatively correlated with stigma (p < 0.01), and positively correlated with self-disclosure and social support (p < 0.01). Self-disclosure and social support played a complete mediating effect between stigma and QOL, and the total mediating effect value was 85. 87%. Conclusions Self-disclosure and social support play a complete intermediary role between stigma and QOL. In order to improve the quality of life of patients, medical staff should pay attention to the assessment of stigma, encourage patients to express their emotions, and encourage their families and friends to respond to their expression and needs of patients.
Background Nasopharyngeal carcinoma (NPC) has serious effects on the daily lives and psychosocial adjustment of survivors. In particular, psychosocial problems are a prominent concern. Objective The aim of this study was to understand the lived experiences of NPC survivors regarding psychosocial adjustment. Methods A qualitative design using individual semistructured interviews was conducted with 20 NPC survivors. Each participant was asked open-ended questions about their lived experience with psychosocial adjustment. The data were then subjected to thematic analysis. Results The following 4 themes, which had subthemes, were identified from the data: (1) grappling with discomforts (symptoms distress of late toxicities, impaired body image, and returning-to-work restrictions), (2) struggling with uncertainty (disease attribution with self-blame, contradictory rehabilitation information, fear of cancer recurrence, and distance from medical staff), (3) changing social patterns (special favors, social isolation, and social discrimination), and (4) cultivating positive change (healthy lifestyle and positive mindset). Conclusions Nasopharyngeal carcinoma survivors experience many obstacles, as well as positive changes, during psychosocial adjustment. This study highlights the pressing need to consider NPC survivors’ concerns about their psychosocial adjustment. Implications for Practice Medical staff should provide NPC survivors with sufficient rehabilitation information to help them deal with possible late toxicities and mitigate their uncertainty and misunderstanding. Effective public education measures are needed to address misunderstandings about cancer in Chinese cultural settings.
The burden of human papillomavirus (HPV) and HPV-related cancers and genital warts is increasing in developing countries, including Indonesia. The objective of this study was to qualitatively explore the humanistic and economic burden of these HPV-related diseases in patients in Indonesia. In 2021, in-depth interviews and focus groups were conducted with patients (N = 18) with HPV-related diseases and healthcare professionals (HCPs; N = 10) specialised in treating these patients. Interviews explored the physical, mental, social, and economic burden of HPV-related diseases. Patients emphasised the psychological and social burden of HPV-related diseases, which negatively impacted their mental state and close relationships. Treatment for HPV-related diseases was also associated with a substantial cost, which health insurance only partially alleviated. HCPs understood the physical negative impact of HPV-related diseases, but some understated patients' social, psychological, and financial burden. This research underscores the substantial economic and humanistic burden of HPV-related diseases that could be prevented by vaccination. In addition, it highlights the need for novel interventions to reduce negative psychosocial consequences of HPV-related diseases in Indonesia. Increased HCP education of the broader humanistic impacts of HPV-related diseases may improve patient support and increase awareness for preventive strategy.
Full-text available
Cervical cancer is the leading cause of cancer mortality in India, accounting for 17% of all cancer deaths among women aged 30 to 69 years. At current incidence rates, the annual burden of new cases in India is projected to increase to 225,000 by 2025, but there are few large-scale, organized cervical cancer prevention programs in the country. We conducted a review of the cervical cancer prevention research literature and programmatic experiences in India to summarize the current state of knowledge and practices and recommend research priorities to address the gap in services. We found that research and programs in India have demonstrated the feasibility and acceptability of cervical cancer prevention efforts and that screening strategies requiring minimal additional human resources and laboratory infrastructure can reduce morbidity and mortality. However, additional evidence generated through implementation science research is needed to ensure that cervical cancer prevention efforts have the desired impact and are cost-effective. Specifically, implementation science research is needed to understand individual- and community-level barriers to screening and diagnostic and treatment services; to improve health care worker performance; to strengthen links among screening, diagnosis, and treatment; and to determine optimal program design, outcomes, and costs. With a quarter of the global burden of cervical cancer in India, there is no better time than now to translate research findings to practice. Implementation science can help ensure that investments in cervical cancer prevention and control result in the greatest impact.
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BACKGROUND Globally, breast cancer (BC) has become the leading cause of mortality in women. Awareness and early detection can curb the growing burden of BC and are the first step in the battle against BC. The aim of this qualitative study was to explore the awareness and perceived barriers concerning the early detection of BC. METHODS A total of 20 focus group discussions (FGDs) were conducted during May 2013–March 2014. Pre-existing themes were used to conduct FGDs; each FGD group consisted of an average of ~10 women (aged ≥18–70 years) who came to participate in a BC awareness workshop. All FGDs were audio taped and transcribed verbatim. The transcripts were inductively analyzed using ATLAS.ti. Based on emerged codes and categories, thematic analysis was done, and theory was developed using the grounded theory approach. RESULTS Data were analyzed in three major themes: i) knowledge and perception about BC; ii) barriers faced by women in the early presentation of BC; and iii) healthcare-seeking behavior. The findings revealed that shyness, fear, and posteriority were the major behavioral barriers in the early presentation of BC. Erroneously, pain was considered as an initial symptom of BC by most women. Financial constraint was also mentioned as a cause for delay in accessing treatment. Social stigma that breast problems reflect bad character of women also contributed in hiding BC symptoms. CONCLUSIONS Lack of BC awareness was prevalent, especially in low socioeconomic class. Women’s ambivalence in prioritizing their own health and social and behavioral hurdles should be addressed by BC awareness campaigns appropriately suited for various levels of social class.
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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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This review aims at identifying barriers to utilization of cervical cancer prevention services in low- and middle-income countries. An electronic search was conducted using the following key words, HPV vaccination, screening, barriers, utilization and low and middle income/developed countries. Using the Garrard (1999) Matrix method approach, a modified matrix was designed and used as a data collection tool and data related to each category listed on the tool were entered into a matrix containing columns reflecting the categories. Constant comparative analysis was used to identify thematic categories. 31 articles published between 2001 and 2014 were yielded from the search. Analysis of the contents of the articles showed that the underutilization of cervical cancer screening services in low and middle-income countries is the result of barriers in accessing and utilizing of the prevention services. Though not mutually exclusive, the barriers were categorized in three categories; individual, community and health system related. Individual barriers include lack of awareness and knowledge about risk factors and prevention of cervical cancer. Age, marital status, diffidence, social economic status, cultural and religious belief of the women also determine the women's' willingness to utilize the services. In some communities there is stigma attached to discussing reproductive health issues and this limits the young women's awareness of cervical cancer and its prevention. Understanding individual, community and health system barriers that hinder women's utilization of cervical cancer prevention services is very crucial in designing effective cervical cancer control programs in low- and middle-income countries.
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Cancer is a leading cause of death worldwide. A large proportion of cancer deaths are preventable through early detection but there are a range of social, emotional, cultural and financial dimensions that hinder the effectiveness of cancer prevention and treatment efforts. Cancer stigma is one such barrier and is increasingly recognized as an important factor influencing health awareness and promotion, and hence, disease prevention and control. The impact and extent of stigma on the cancer early detection and care continuum is poorly understood in India. To evaluate cancer awareness and stigma from multiple stakeholder perspectives in North India, including men and women from the general population, health care professionals and educators, and cancer survivors. A qualitative study was conducted with in-depth interviews (IDIs) and focus group discussions (FGDs) among 39 individuals over a period of 3 months in 2014. Three groups of participants were chosen purposively - 1) men and women who attended cancer screening camps held by the Indian Cancer Society, Delhi; 2) health care providers and 3) cancer survivors. Most participants were unaware of what cancers are in general, their causes and ways of prevention. Attitudes of families towards cancer patients were observed to be positive and caring. Nevertheless, stigma and its impact emerged as a cross cutting theme across all groups. Cost of treatment, lack of awarenes and beliefs in alternate medicines were identified as some of the major barriers to seeking care. This study suggests a need for spreading awareness, knowledge about cancers and assessing associated impact among the people. Also Future research is recommended to help eradicate stigma from the society and reduce cancer-related stigma in the Indian context.
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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. 
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.
Young people – particularly girls and young women in sub-Saharan Africa – face significant challenges accessing sexual and reproductive health information and services. These challenges are shaped in part by sociocultural factors, including stigma. This paper presents findings from a qualitative study that explored the micro-level social process of stigma surrounding young people’s sexual and reproductive health in two communities in Tanzania. Respondents described an environment of pervasive stigma surrounding the sexual and reproductive health of unmarried young people. Stigma manifested itself in multiple forms, ranging from verbal harassment and social isolation to physical punishment by families, community members, peers and healthcare providers. Respondents perceived that stigma was a barrier to young people accessing sexual and reproductive health services and identified excessive questioning, scolding and requirements to bring sexual partners or parents to receive services at health facilities as obstacles to accessing care. The pervasiveness and complexities of stigma surrounding young people’s sexual and reproductive health in the two study communities and its potential consequences for health suggest both a need for care in using the term stigma as well as further studies on the feasibility of incorporating stigma-reduction strategies into young people’s sexual and reproductive health programmes.