|Year : 2019 | Volume
| Issue : 3 | Page : 51-53
Cancer and stigma: Present situation and challenges in India
Soumya Swaroop Sahoo1, Dinesh Prasad Sahu2, Madhur Verma1, Pragyan Paramita Parija3, Udit Kumar Panda4
1 Department of Community and Family Medicine, AIIMS, Bathinda, Punjab, India
2 Department of Community and Family Medicine, AIIMS, Bhubaneswar, Odisha, India
3 Department of Community and Family Medicine, AIIMS, Raipur, Chhattisgarh, India
4 Department of Psychiatry and NDDTC, NIMHANS, Bengaluru, Karnataka, India
|Date of Web Publication||27-Dec-2019|
Dr. Soumya Swaroop Sahoo
Department of Community and Family Medicine, AIIMS, Bathinda, Faridkot - 151 203, Punjab
Source of Support: None, Conflict of Interest: None
India is going through a significant epidemiological transition with the rising of chronic diseases such as cancer. An accompanying aspect is social stigma and negative perceptions regarding cancer. This not only affects cancer care and treatment but also puts a strain on prevention efforts. It is particularly worrisome in a low- and middle-income country like India with low levels of health literacy and the lack of access to cancer care. There have been attempts by the government and positive changes toward mitigating stigma, but a lot needs to be done to address this issue. The family and the community need to be significant players in synergy with the health system in the efforts to minimize the stigma in cancer.
Keywords: Cancer, India, stigma
|How to cite this article:|
Sahoo SS, Sahu DP, Verma M, Parija PP, Panda UK. Cancer and stigma: Present situation and challenges in India. Oncol J India 2019;3:51-3
|How to cite this URL:|
Sahoo SS, Sahu DP, Verma M, Parija PP, Panda UK. Cancer and stigma: Present situation and challenges in India. Oncol J India [serial online] 2019 [cited 2020 Feb 25];3:51-3. Available from: http://www.ojionline.org/text.asp?2019/3/3/51/274097
| Introduction|| |
India is witnessing a paradigm shift in the prevailing pattern of diseases with noncommunicable diseases taking the center stage. Noncommunicable diseases alone accounted for 63% of all deaths in India in 2016. In our country, more often than not, cancer patients present at a later stage of the disease. Financial constraints, low level of health literacy, and lack or minimal access to health-care facilities and treatment options are the major factors leading to delayed presentation and care seeking.
Health-related stigma is increasingly recognized as a factor influencing health promotion, disease prevention, and control. A significant concern with an illness such as cancer is the social stigma and negative perceptions of the disease. Despite advances in medical technology and many new cancer care centers in the country, cancer is still considered to be a death warrant, many a time. When structural barriers to care are added to these negative psychosocial perceptions, it results in a pitiable condition, particularly for patients reporting at late stages when curative treatment is not that rewarding. Cancer stigma has received less consideration than the stigma associated with communicable diseases such as HIV/AIDS.
| Cancer and Stigma|| |
Stigma is typically a social process, experienced or anticipated, characterized by exclusion, rejection, blame, or devaluation that results from experience, perception, or reasonable anticipation of an adverse social judgment regarding a person or group. Stigma may occur in two forms – perceived and actual. Perceived stigma refers to the shame associated with having a condition and to the fear of being discriminated against and denied fundamental welfare rights leading to social exclusion. On the other hand, actual stigma refers to overt discrimination, which may lead to feelings of guilt, shame, and threatens one's own identity. It threatens the psychological and social aspects of life. The stigma associated with the disease is further compounded when the patient is held responsible for the condition and whether the disease leads to severe disabilities, disfigurement, or any disruption of social interactions.
| Causes of Stigma|| |
The stigma associated with cancer has many facets. Not only the diagnosis but also the cancer care, treatment, and prevention have many myths and misconceptions related to it. Many reasons can be attributed to the ensuing stigma that a diagnosis of cancer brings with it. Few of them are fear and myths of incurability, pain, suffering, loss of control and independence, helplessness, isolation, loss of wages, poverty, and death. Cancer symptoms and the body part also harbor the stigma. People are more reluctant to disclose their symptoms related to breast or cervical cancer or any cancer involving the genital organ. The willingness toward the investigation procedures and general examination is also affected by these cancer sites.
People with cancer often find themselves in a state of isolation due to denial and avoidance by society.
Many a time, family members can be a source of stigma, particularly in rural areas. The diagnosis of cancer leads to distress in the family, and the extent of the difficulty is related to the variables such as age, sex, socioeconomic status, and role of the person in the family. If the cancer patient happens to be of the elderly age group, he may be deprived of the care when he/she needs the most. Furthermore, there is a perception that a person having cancer is too ill to be employed, which makes the life of the person difficult by curtailing employment opportunities. Thus, it becomes difficult for individuals with cancer return to work or to try to secure new employment. Therefore, cancer is often kept a secret in the workplace. All cancers are prone to stigma because of their association with societal taboos of individual behaviors such as sexual promiscuity, alcohol, or tobacco use. Another reason for people with cancer separating them from society is the fear of death. It is inevitable, with some aggressive cancers having a concise course and high mortality.
| Effect of Stigma on Cancer Care|| |
Cancer-related myths and stigma can alter the behavior both at population and individual levels, starting from the diagnosis to after the treatment and end-of-life care period. The person is less likely to adopt any behavior that can reduce cancer risk or positive health-seeking. They also have a negative impact on improving health literacy about cancer in society.
Many patients feel the diagnosis brings with it a label of being a cancer patient. The labeling comes in various forms; through the appearance of perceived signs or symptoms of cancer or treatment side effects or cancer diagnosis by a health professional. Furthermore, a lot of misconceptions and myths regarding magical cure or remedies by quacks/faith healers delay the care-seeking behavior. This is also one of the factors for the delayed diagnosis and initiation of the proper treatment.
Myths about cancer treatment are also common. Patients are often reluctant to undergo surgery because they believe that “cancer can spill out and spread immediately if we cut or operate cancer.” Some perceive cancer treatment to be as bad as, or worse than, the disease itself. The after effects of cancer treatment, such as loss of hair, resected breast, open healed wounds and other physical deformities makes it more unacceptable and prone to stigma. However, early detection and improved modalities of treatment and better end-of-life care have improved the situation. Health-care professionals have a critical role in supporting the patient. The external appearance has an important predictor of stigmatization that can affect interpersonal interactions and psychosocial well-being. Cancer can become visible as the disease progresses or treatment side effects become obvious., It markedly affects the quality of life. The treatment of cancer is a financially devastating burden to the family because mostly expenses for diagnosis, treatment, and patient support are completely or partially paid by the patient and the family, leading to catastrophic out of pocket expenditures. This is particularly true in low- and middle-income countries such as India, where the penetration of health insurance is poor.
After treatment and end-of-life care
All through the treatment course and after that too, myths such as pain during treatment, death, and stigma per se can have a negative impact on health outcomes among cancer survivors.,,, Many times, end-of-life care is challenging and influenced by cultural and social practices, and family has a more significant say in the decisions.
| Way Forward|| |
The patient-physician communication remains an essential and critical step for mitigating cancer stigma. The diagnosis of cancer is many a time concealed from the patient due to the insistence of families, sociocultural norms, and the burden it brings alongside it. This affects the further decision-making process and development of coping strategies in the case of the patient.
The patient-physician communication should be built on trust and on real terms taking into confidence the family/caregivers. This would give the patient a choice to make decisions, which he/she seems plausible. Regarding societal stigma, public education, and awareness campaigns can be a reinforcing factor for building health literacy about cancer stigma. Awareness campaigns in schools and colleges can be of great help in changing societal perceptions. Furthermore, strong advocacy efforts and sensitizing the general population about the impact of stigma on cancer survivors can reduce fear-inducing experiences. There is ample evidence in the field of HIV/AIDS in India that stigma-reducing interventions are needed and acceptable.,
The cancer treatment modalities have improved a lot, and the Government is launching many cancer awareness campaigns. Under the National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases and Stroke, Government of India, has started population-level screening of common cancers such as oral, breast, and cervical cancers. Population-level screening aims at screening for risk factors, which will help to generate awareness on healthy living and focusing on the prevention of the diseases and discouraging poor lifestyle practices. Individuals who have actively fought cancer can be the face of stigma reducing campaigns and motivators.
| Conclusions|| |
Unfortunately, cancer stigma has not been addressed adequately despite the cancer burden growing steadily over the years. Nevertheless, we need to make attempts to make the lives of cancer diagnosed patients more livable by reducing all forms of the stigma associated with it.
Stigma mitigation measures need to involve the family and the community to be successful in the long term.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Pati S, Hussain MA, Chauhan AS, Mallick D, Nayak S. Patient navigation pathway and barriers to treatment seeking in cancer in India: A qualitative inquiry. Cancer Epidemiol 2013;37:973-8.
Daher M. Cultural beliefs and values in cancer patients. Ann Oncol 2012;23 Suppl 3:66-9.
van Brakel WH. Measuring health-related stigma-a literature review. Psychol Health Med 2006;11:307-34.
Weiss MG, Ramakrishna J, Somma D. Health-related stigma: Rethinking concepts and interventions. Psychol Health Med 2006;11:277-87.
Goss PE, Strasser-Weippl K, Lee-Bychkovsky BL, Fan L, Li J, Chavarri-Guerra Y, et al
. Challenges to effective cancer control in China, India, and Russia. Lancet Oncol 2014;15:489-538.
Moffatt S, Noble E, Exley C. Done more for me in a fortnight than anybody done in all me life. How welfare rights advice can help people with cancer. BMC Health Serv Res 2010;10:259.
Chapple A, Ziebland S, McPherson A. Stigma, shame, and blame experienced by patients with lung cancer: Qualitative study. BMJ 2004;328:1470.
Daher M. Gaps in end-of-life car He. J Med Liban 2011;59:37-9.
MacDonald LD, Anderson HR. Stigma in patients with rectal cancer: A community study. J Epidemiol Community Health 1984;38:284-90.
Peters-Golden H. Breast cancer: Varied perceptions of social support in the illness experience. Soc Sci Med 1982;16:483-91.
Chambers SK, Dunn J, Occhipinti S, Hughes S, Baade P, Sinclair S, et al
. A systematic review of the impact of stigma and nihilism on lung cancer outcomes. BMC Cancer 2012;12:184.
Cataldo JK, Jahan TM, Pongquan VL. Lung cancer stigma, depression, and quality of life among ever and never smokers. Eur J Oncol Nurs 2012;16:264-9.
Link BG, Phelan JC. Stigma and its public health implications. Lancet 2006;367:528-9.
Chittem M, Norman P, Harris PR. Illness representations and psychological distress in Indian patients with cancer: Does being aware of one's cancer diagnosis make a difference? Psychooncology 2015;24:1694-700.
Shah SM, Heylen E, Srinivasan K, Perumpil S, Ekstrand ML. Reducing HIV stigma among nursing students: A brief intervention. West J Nurs Res 2014;36:1323-37.
Radhakrishna K, Dass D, Raj T, Rakesh D, Kishore R, Srinivasan K, et al
. Development of a Novel Tablet-based Approach to Reduce HIV Stigma among Healthcare Staff in India. Perspect Health Inf Manag 2017;14:1b.