Background
Experienced | Stigma that is enacted through interpersonal acts of discrimination |
Perceived | Perception of the prevalence of stigmatizing attitudes in the community or among other groups (e.g. healthcare providers) |
Anticipated | Fear of stigma, whether or not it is actually experienced |
Secondary | Stigma by association, extended to family or other caregivers of stigmatized individual |
Observed | Stigma occurring to others that is witnessed or heard about |
Layered | The intersecting of stigmas faced by individuals who are part of multiple marginalized groups |
Methods
Parameter | Breast Cancer Study | Cervical Cancer Study | ||||
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Location
| Tertiary care hospital: St. Johns Medical College and Hospital, Bangalore, Karnataka | Community based: Bangalore Rural and Chikkaballapura Districts, Karnataka through collaboration with Cancer Care India (CCI), an NGO that provides cervical cancer education, screening, diagnostic and treatment services. | ||||
Data collection methods
| - In-depth interviews | - Focus Group Discussions (FGD) - In-depth interviews (IDI) | ||||
Participants
| Inclusion Criteria | |||||
- Patients with a histo-pathologically confirmed diagnosis of breast cancer with early, advanced and metastatic disease, their caregivers, and healthcare providers - Above age 18 and fluent in English, Kannada, or Tamil | - FGD inclusion criteria: Women eligible for screening (30–45 years, 46–60 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 Villagesb
| ||||
Primary caregivers | 22 | Women | 4 | 43 | ||
Screened women | 6 | 6 | ||||
Healthcare providers | 10 | Husbands | 2 | 21 | ||
Unexposed Villagesc
| ||||||
Total | 59 | Younger Women | 4 | 38 | ||
Husbands | 2 | 18 | ||||
Healthcare Providers | 8a
| 10 | ||||
Community Leaders | 10a
| 11 | ||||
Total | 12 | 24 | 147 | |||
Data Analysis software
| NVivo 9.2 | NVivo 9.2 and Atlas Ti |
Breast cancer (BC) study
Cervical cancer (CC) study
Ethics statement
Data collection and analysis
Breast Cancer Study | Cervical Cancer Study |
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Knowledge and awareness about breast cancer Pre-diagnosis - Symptoms - Experience seeking care Diagnosis - Experience receiving diagnosis - Personal and family reaction Treatment - Treatment experience - Side effects Perceptions of care Financial impact Family and social relationships - Family and social support - Changes in relationships Survivorship - Strategies for improving the cancer care trajectory - Future plans beyond treatment Provider role and experiences providing cancer care Provider perspectives on improving breast cancer prevention and treatment | Awareness about cervical cancer - Knowledge of: risk factors for cervical, symptoms, prevention, treatability - Sources of information Facilitators and barriers to cervical cancer screening (uterus/pelvic exams) - Knowledge of screening - Comfort going to or talking about screening and cervical cancer symptoms - Reasons for not screening - Willingness to be screened in the absence of symptoms - Family and community support of cervical cancer screening - Potential strategies for facilitating screening - Stigma: Community & family reactions to cancer - Changes in familial relationships - Social isolation - Shame & embarrassment - Differences in treatment of women with different types of cancer |
Results
Drivers
Cancer as contagious
R2: They will avoid going to their places thinking it will spread to them also.
R3: If they offer anything to eat they don’t take it. Even they will advise their kids to avoid them.
R4: They wouldn’t like to share food in the same plate.
R1: They think that they are having cancer and if we eat in their plate, we will also get it. From us it will spread to our family members like this they fear.
R2: They think it is contagious disease.
R3: All diseases will spread from one person to other. (CC FG women).
“Everyone mainly have a feeling that it is a contagious disease… The moment they know a person is having cancer then the first thing that comes to their mind is it is a contagious disease… They 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)
This fear of cancer being transmissible even extends to those living with cancer. As a breast cancer patient 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).“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)
Others also recognized the negative impact of the stigmatizing avoidance behaviors on people living with cancer, including how it could lead to self-isolation to avoid the stigma and even suicide.“Other people think they should not share food, clothes and they should not share soap and also they won’t sleep with others. They should be separate only…I suffered very much and I thought I should not live, that is very difficult for me.” (IDI BC patient)
“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 ‘what’ of 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 explained, even among educated persons, this general sense of cancer as punishment holds forth:“Karma. They use that word. They say, “it must be their last birth’s karma or present life’s 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)
In addition to the general belief of punishment of undefined ‘bad’ deeds, a few respondents raised the issue of sexual transgressions being the cause of the cancer. Implying 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.“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 God’s will we are quite well off. But even at this level there are people who think like this.” (IDI BC caregiver)
“R2: There will be a different people who start thinking that women having problems are having sex with others.”
Interestingly, while several respondents mentioned sexual transmission as one of several possible causes of cancer, 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.’R1: “Yes. Women are afraid what others would think that way about them” (FGD CC women)
Cancer as a death sentence
“Life is finished nothing is there after getting cancer….There is a belief among people that people will die if they get cancer. They don’t know there are many types in cancer and cancers are curable.” (IDI BC patient)
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 affected 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 socially they “R1: wouldn’t 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 transmission, general discomfort with someone who is sick and a fear of death: “R1: They feel disturbed when they see people like them. R2: Some will fear it is contagious, so they will move away. R3: Some will fear death.” (FGD CC women).“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)
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.“Even though men send for the test, ladies don’t go 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 don’t 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 don’t tell even if they have stomach ache thinking that people will assume that they have disease, they don’t go for test, so they are scared. Almost all ladies will have that fear.” (FGD CC women)
“R1: They wouldn’t take her for work at all.”
R2: First of all they couldn’t work also.
R1: They wouldn’t take her for work.
R2: Once they come to know about it they wouldn’t 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. That’s the main attitude.” (FGD CC women)
In addition to a general fear of death and being near someone 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 attention 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).“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).
Manifestations of stigma
Isolation
“They are not sure what the reaction of family members would be. They are afraid that they might be rejected and isolated. They are not sure if they would be encouraged in this matter.” (IDI CC healthcare provider)
“R1: They have fear that people will look down up on them if they detect cancer. If they have children, they will fear it could affect their children”
R1: Sometimes they are afraid of relatives and what they would talk about them
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 insistence that the person was being treated well. Pointing to a lack of awareness that the isolating behaviour was stigmatizing.R2: “They feel they will die early and her family will be spoilt.” (FGD CC men)
“These practical things will be kept separate, but there won’t be discrimination for care and empathy.” (IDI BC caregiver)
This non-recognition that the described avoidance behaviours are indeed stigmatizing and discriminatory, and unnecessary from a transmission standpoint, is illustrated in this exchange between a community leader and the interviewer:“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)
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.“They don’t usually ill-treat her. They would definitely treat her well at home… In the households that I know I have come across keeping things separately for them. They keep separate clothes and plates for them in the family…In 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)
“I don’t speak, because I feel that others shouldn’t know that I have this problem…Why 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 issues… others might see me differently… They will think low about me and they would have avoided me from them and that would affect my daughter’s future life.” (IDI BC patient)
“You take our home care team, there are lots of times when family members will tell, ‘Please don’t 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 family…It 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)
While not frequently mentioned, a particularly severe and feared form of isolation was abandonment by husband or family. Description of abandonment was often caveated, noting whether it happened or not would be dependent on whether it was a ‘good’ family or not.“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)
“Some of them will leave their wife. Some of them will treat them well. Some of them keep them away saying you have cancer. Don’t come near me, do not talk to me and I will send you away… like 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 reduced…They will not support me more. But, I have lot of support for my friends.” (IDI BC caregiver)
Verbal Abuse
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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);
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Teasing: “well, in the society other people will tease her.” (IDI CC healthcare provider);
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Talking badly about the person: “They will use abusing words to her.” (FGD CC women);
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Blaming: “she used to do bad things. And hence she got it. She deserves to suffer.” (IDI CC community leader).
“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
“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, that’s 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)
Linked to fear of gossip and its consequences were descriptions 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 because 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.“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)
“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”
R3: Due to this, others will come to know about the disease they have. Thinking about all these things, they do not go to the doctor at all
R4: “Some of them are afraid of the disease and afraid where others will come to know about it.” (FGD CC women)
Expressions of support
“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
“Some people might feel ashamed to talk. They feel shy to talk about the cancer their family is having. People start gossiping that the person has got the disease at such a young age and they scold them.” (IDI CC woman)
Women with breast cancer and their caregivers confirmed this fear and talked about non-disclosure as a coping mechanism to ward off stigma and protect oneself: “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 protective 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 being for other medical issues.“She will tell to her husband. She will not tell to anyone else… the 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…. She won’t tell to her mother-in-law fearing that she might talk bad about her.” (IDI CC healthcare provider)
“When I get ready to go the hospital they ask me ‘where are you going?’ I don’t tell that I am going for radiation treatment, I was telling them that I am going for Physio therapy.” (IDI BC patient)
“We haven’t told anyone; we have told that she is getting some treatment for cough. We don’t 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 it…If we don’t tell them that she has cancer everything will be normal.” (IDI BC caregiver)
Care Seeking
“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 don’t discuss such things freely. Only when it reaches incurable stage they will tell. Usually village women wouldn’t 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 it…They will keep suffering silently until they can’t 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)
Fear of disclosure through gossip and resultant stigma was also linked to challenges with remaining adherent to treatment.“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 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)
“But in villages they feel ashamed to tell it is cancer. If some people are undergoing cancer treatment, then they don’t 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)