Stigma refers to distinctive, discrediting characteristics, rendering its bearer tainted by others and recognises difference and devaluation. Evidence suggests that cancer is a stigmatized disease. Cancer-related stigma is not documented in India, little is known about how it impacts health-seeking behavior, treatment adherence, quality of life and psychosocial wellbeing in cancer patients. Limited study has explored perceptions and cultural representations of cancer. This context specific information is essential for relevant, effective intervention.
This qualitative study was conducted in two districts Kolkata and North 24 Parganas of West Bengal, India, and included participants from a range of cultural and racial groups. Cancer patients over 18 years (n = 300) were recruited through Salt Lake City Medical Centre to participate. Six focus groups and 40 in depth interviews were conducted with cancer patients. Data collection focused on understanding patient experiences of cancer stigma, cognitive, emotional and behavioural responses to this, and inputs on interventions to address this. Six focus groups were also conducted with friends and non-related service providers, (n = 240) in order to explore cultural perceptions of cancer and reasons for stigmatization. Data were recorded and were authenticatedly translated and transcribed; and analysed by thematic analysis.
Results indicated very poor knowledge of cancer in patients and care givers. Findings highlight the perception of cancer as a 'death sentence' and a punishment from providence, influencing patients' interactions with others in numerous ways. The influence of cultural beliefs was relevant, exacerbating stigma in some cases. The location of the cancer also played a role in determining level of stigmatization. Certain body parts (associated with masculine and feminine roles) as well as more visible cancers/side-effects were more stigmatised.
Stigmatization is a factor for cancer patients and is related to education and social background, increasing social isolation and negatively impacting quality of life. The implications of the findings for intervention development will be discussed. Education is needed but requires a different focus for different cultural groups.
Clinical trial identification
Legal entity responsible for the study
Gouri Shankar Bhattacharyya.
Has not received any funding.
All authors have declared no conflicts of interest.