Perceived, experienced, and internalized cancer stigma: Perspectives of cancer patients and caregivers in India

Abstract

Cancer stigma may lead to delayed diagnosis and treatment, especially in low- and middle-income countries. This exploratory, pilot study was conducted in India to explore the degree to which cancer stigma is perceived, experienced, and internalized among adults living with cancer and their primary caregivers. We conducted a survey of cancer patients and their caregivers in two Indian cities. The survey assessed perceived, experienced, and internalized stigma; demographic characteristics; patient cancer history; mental health; and social support. A purposive sample of 20 cancer survivor and caregiver dyads was drawn from an ongoing population-based cohort study. Overall, 85 percent of patients and 75 percent of caregivers reported experiencing some level (i.e., yes response to at least one of the items) of perceived, experienced, or internalized stigma. Both patients (85 percent) and caregivers (65 percent) perceived that community members hold at least one stigmatizing belief or attitude toward people with cancer. About 60 percent of patients reported experiencing stigma, and over one-third of patients and caregivers had internalized stigma. The findings indicate that fatalistic beliefs about cancer are prevalent, and basic education about cancer for the general public, patients, and caregivers is required. Cancer-related stigma in India should continue to be studied to determine and address its prevalence, root causes, and influence on achieving physical and mental health-related outcomes.