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

Abstract

BackgroundBreast 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.MethodsTwo 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.ResultsCancer 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.ConclusionsThe 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 materialThe online version of this article (doi:10.1186/s12905-017-0407-x) contains supplementary material, which is available to authorized users.

Experiences of cervical cancer survivors in Chitwan, Nepal: a qualitative study

“…Other studies have also described similar manifestations of stigmatization. The physical or social isolation and verbal abusive comments had also been described in a study in Karnataka, India [15], and in a study on cervical cancer stigma in rural Kenya [25].…”

“…Our study revealed that pertaining cervical cancer to ultimate death and fear of transmission assuming it as a communicable disease are the driving factors for the origin of stigma. Similar perceptions, cancer as a communicable disease and leads to ultimate death, driving the stigmas related to cervical cancer are also described on a qualitative study of stigma related to cervical and breast cancer in Karnataka, India [15] and a study on stigma related to cervical cancer among women in Brazil [21]. Furthermore, the mind of the people being so constantly preoccupied with the thoughts and ideas of blaming or attributing cervical cancer to the individual’s promiscuous sexual behavior, like sleeping with multiple men, or relating it to sexually transmitted disease [21] or blaming cervical cancer as a punishment to individual’s bad deeds/transgressions, like assuming they must have done something wrong [15], it naturally rooted the stigma related to cervical cancer.…”

“…Similar perceptions, cancer as a communicable disease and leads to ultimate death, driving the stigmas related to cervical cancer are also described on a qualitative study of stigma related to cervical and breast cancer in Karnataka, India [15] and a study on stigma related to cervical cancer among women in Brazil [21]. Furthermore, the mind of the people being so constantly preoccupied with the thoughts and ideas of blaming or attributing cervical cancer to the individual’s promiscuous sexual behavior, like sleeping with multiple men, or relating it to sexually transmitted disease [21] or blaming cervical cancer as a punishment to individual’s bad deeds/transgressions, like assuming they must have done something wrong [15], it naturally rooted the stigma related to cervical cancer. Blaming cervical cancer to the promiscuous sexual behavior was also described as a driving factor in a qualitative study to identify the social stigma among cervical cancer survivors in American society [22] and an experimental study to explore the knowledge of HPV link to cervical cancer and stigma in Florida, America [23].…”

“…Similarly, a cross-sectional study in Morocco also reported poor awareness in women about cervical cancer and have no symptoms at all as a cause for poor Pap screening uptake practice [14]. Moreover, stigma related to cervical cancer was identified as a barrier to cervical cancer screening in Karnataka, India [15], and poor finances and lack of insurance, sense of well-being, transportation issues and dissatisfaction with the behavior of service provider were some issues related to poor screening behavior among survivors in North Carolina, USA [9]. Prior bad experiences with the detection of cancer were also described as a barrier to cervical cancer screening among older African American and Hispanic urban women [16].…”

“…Similarly, delayed healthcare-seeking behavior despite persistent symptoms was also noted in cervical cancer survivors in North Carolina [9]. On the other hand, some studies articulated the delayed healthcare seeking to the stigma related to cervical cancer [15]. This behavior seems concerning as this frequently leads to delayed presentation to medical attention thus, leading to delayed diagnosis and treatment which can increase the negative impact of disease in affected individuals.…”