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 awareness 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.