Perceived, Experienced, and Internalized Cancer Stigma: Perspectives of Cancer Patients and Caregivers in India

Cancer stigma may lead to delayed diagnosis and treatment, especially in lowand 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. Acknowledgments This research was supported by grant 9P20CA210298 to Emory University and RTI subaward 35176. This work was also supported by the Wellcome Trust/DBT India Alliance Fellowship [grant number IA/ CPHE/17/1/503340] awarded to Dr. Aastha Aggarwal. The study team would like to acknowledge the support from the following individuals: Dipika Bumb, who reviewed the questionnaire and coordinated interviewer training; Jeffrey Novey who edited the manuscript; and Drs. Theresa Gillespie and Michael Goodman, who provided input into the initial study design and comments on the manuscript. RTI Press: Research Report Cancer Stigma in India 1 RTI Press Publication No. RR-0044-2104. Research Triangle Park, NC: RTI Press. https://doi.org/10.3768/rtipress.2021. rr.0044. 2104 Introduction The burden of cancer is growing globally, with rising rates of incidence and mortality.1 India, for example, has high rates of breast, cervical, and ovarian cancers for women and oral, lung, and stomach cancers for men, with the number of total new cancer cases for 2018 estimated at over 1.1 million and the number of cancer deaths close to 800,000.2 Given the increasing cancer rates in India, understanding the burden of cancer on patients and their caregivers is important to improving access to care and social support. Cancerrelated stigma is one potential barrier to care and support. Consequently, it is critical to understand cancer stigma in India better and the degree to which it is perceived, experienced, and internalized.3 Stigma is increasingly recognized as a fundamental determinant of health and health inequity,4 whether it is disease-specific or targeted towards marginalized groups. Diseaseor health-specific stigma is defined as a social process or related personal experience characterized by exclusion, rejection or blame that results from experience or reasonable anticipation of an adverse social judgment about a person or group identified with a particular health problem. The judgment is medically unwarranted with respect to the health problem itself.5 Stigma has been linked to lower uptake of screening for disease, linkage to care once diagnosed, retention in care, adherence to medication, social support, mental health, and overall poorer health outcomes for multiple conditions, including cancer.5 In India, limited research has been conducted on the relationship between cancer stigma and health seeking, treatment adherence, and health outcomes.6 However, stigma has been associated with delayed presentation for diagnosis and treatment6 and depression among breast cancer patients.7,8 There is a paucity of research on the impact of stigma on the social support and mental health of cancer patients and on secondary cancer stigma, which extends to family or other caregivers. In India, cancer patients have reported the belief that people brought cancer upon themselves by breaking social mores, either in this life or a previous life9,10 (i.e., Karma) or that they have breast cancer because they have “bad character. ”11 Bodily changes (disfigurement) caused by cancer and its treatment can also lead to stigma.10 Lack of knowledge about the causes of cancer and fear that cancer is contagious have also been identified as causes of stigma in India.9,10,12 Manifestations of cancer stigma in India range from social isolation within the home or community, gossip and verbal abuse, reduced marriage prospects (for self or children),9,12 and physical separation within the home—such as distinct eating spaces and washing utensils, clothes, and living spaces.10 Understanding (1) how cancer stigma manifests among cancer patients and caregivers—who often suffer from secondary stigma, (2) the critical role of household members in providing care for patients, and (3) the potential for cancer stigma to undermine the social support for, and mental health of cancer patients are critical to developing strategies to reduce the growing burden of cancer in India,2,13 This exploratory pilot study, conducted in two cities in India, aimed to better understand the degree to which cancer stigma is perceived, experienced, and internalized among adults living with cancer and their primary nonmedical caregivers. The study also sought to explore the degree to which stigma is associated with cancer patients’ self-reported mental health. Materials and Methods We conducted an interviewer-administered, inperson survey of adults who had been diagnosed with cancer and their caregivers in Chennai and Delhi, India, between December 2017 and February 2018. The two cities were chosen to represent both southern and northern regions, respectively. Development of Data Collection Instruments We developed two questionnaires, one for adults previously diagnosed with cancer (hereafter referred to as patients) and one for their caregivers. Each questionnaire assessed perceived, experienced, and internalized stigma as well as demographic characteristics, cancer history (patients), perceived 2 Squiers et al., 2021 RTI Press: Research Report RTI Press Publication No. RR-0044-2104. Research Triangle Park, NC: RTI Press. https://doi.org/10.3768/rtipress.2021. rr.0044. 2104 social support, and mental health status. The questionnaires were developed in English, translated into Hindi (for the Delhi sample) and Tamil (for the Chennai sample), cognitively tested with 10 respondents, revised, and back-translated into English. Knowledge of Cancer Patients and caregivers were asked whether they were previously familiar with cancer (yes/no) and how much they knew about different cancer treatments (none, very little, some, a lot) before they (or the patient) had been diagnosed with cancer. Cancer Fatalism Patients were asked their level of agreement or disagreement with the statement, “I feel I have cancer because it is my destiny” and “There is nothing I could have done to prevent myself from getting cancer. ” Assessments of Stigma Perceived, experienced, and internalized stigma items were adaptions of HIV stigma items from Visser et al.14 and Dos Santos et al.15 with modifications to fit the study context of cancer in India. Perceived Stigma Perceived stigma14 toward people with cancer in each respondent’s community was measured by four yes/ no questions about how others in the community think about or behave toward someone with cancer. Using a four-point disagree/agree set of response options, both patients and caregivers were asked how “beliefs about cancer” affect their own or the patient’s ability to get healthcare or tell others about a personal cancer diagnosis. Experienced Stigma To assess the degree to which respondents experienced cancer-related stigma,14–16 they were asked seven yes/no questions that assessed whether they had ever been excluded from social, religious, or family activities; received discriminatory remarks from family members; experienced verbal or physical harassment; or had someone say they were worried they might contract cancer from them. Respondents were asked if they had ever lost a job or a source of income because of having cancer or because they were the caregiver to someone who had cancer. Cancer patients were asked whether they had ever been denied healthcare or insurance because they had cancer. Internalized Stigma Internalized stigma, also called self-stigma, was measured using the following four items: (1) I feel comfortable telling others about [my/patient’s name] disease; (2) I hide that [I/patient’s name] have cancer from others; (3) I often avoid social gatherings because [I have/patient’s name has] cancer; and (4) I feel ashamed [I have/patient’s name has] cancer. Response options included strongly disagree, disagree, agree, or strongly agree. Mental Health Mental health status was assessed through the Patient Health Questionnaire-417,18—a tool for screening patients for anxiety and depression—by asking respondents how often they had been bothered by problems as a result of having cancer. Response options included never, once or twice, several times, or most of the time. Sample A convenience, purposive sample of cancer patients and caregiver dyads was drawn from the ongoing Cardiometabolic Risk Reduction in South Asia (CARRS) Surveillance Study. CARRS is conducted by the Public Health Foundation of India and Centre for Chronic Disease Control (CCDC) and includes two different cohorts with a total population of over 20,000 adults aged 20 to 99 from the cities of Delhi