Multiple Stakeholder Perspectives on Cancer Stigma in North India

Abstract

Background: 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. Objectives: 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. Materials and Methods: 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. Results: 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. Conclusions: 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.

Impact of oral potentially malignant disorders on quality of life

“…As was observed with the “psychological and social well‐being” domain of the OPMDQoL questionnaire, MCS scores did not differ significantly between the three disorders. Patients with severe disease had significantly greater MCS scores than those with milder forms, perhaps because of greater anxiety regarding the risk of malignant transformation: apart from the inevitable pain and disfigurement of oral cancer, there is a considerable stigma attached to cancer in Indian communities …”

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

“…Stigma is increasingly recognized as a critical psychosocial barrier to, and key social determinant of, health [ 14 ], its negative impact on health most clearly documented in the field of HIV [ 15 – 21 ]. Recognition of the potential role of stigma to similarly undermine the cancer care continuum [ 22 ], particularly cervical and breast cancer prevention, 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 ].…”

Body Image after Breast Cancer Questionnaire: psychometric properties of the Persian version

“…Permanent physical changes induced by BC treatments remind women, particularly the younger ones, of BC and worry them about its recurrence and hence, signi cantly affect their body image (6). They also lose their hope for change in life, have clearer memories of negative life events, and always feel worry about the recurrence of those events (43).…”

“…Body stigma was the second subscale of the Persian BIBCQ in the present study. As a psychosocial crisis, stigma has negative effects on health (44) and hence, its diagnosis and management are of great importance (43). Some studies reported that some people with cancer consider it as the aftermath of their sins.…”

“…Some studies reported that some people with cancer consider it as the aftermath of their sins. This belief isolates them from their families and societies (43). Stigma starts as a powerful social process and results in isolation and discrimination (45).…”