Skip to Main Content

RTI uses cookies to offer you the best experience online. By and clicking “accept” on this website, you opt in and you agree to the use of cookies. If you would like to know more about how RTI uses cookies and how to manage them please view our Privacy Policy here. You can “opt out” or change your mind by visiting: http://optout.aboutads.info/. Click “accept” to agree.

Accept
RTI International
  • About
    • Office Locations
    • Executive Leadership
    • Corporate Governance
    • Partner with Us
      • U.S. Government
      • Clients and Funding Agencies
      • Industry and Commercial Clients
      • Foundations and Associations
      • Bilateral Agencies and Multilateral Banks
      • Universities and Academic Research Institutions
      • Suppliers and Small Businesses
    • Commitment to Quality
      • RTI's Client Listening Program
    • Ethics and Human Research Protection
    • Living Our Mission
    • Veteran Opportunities at RTI

    About

  • Practice Areas
    • Health
      • Public Health and Well-Being
      • Health Care Transformation
      • Behavioral Health
      • Health Behavior Change
      • Precision Medicine
      • RTI Health Solutions (RTI-HS)
      • RTI Center for Community Health Evaluation and Economics Research
      • Health Equity
      • RTI Health Advance
    • Transformative Research Unit for Equity​
      • Equity Capacity Building Hub
      • Social and Economic Justice Research Collaborative
      • Narrative Research and Community Engagement Lab
    • Education and Workforce Development
      • Early Childhood
      • K-12 Education
      • Postsecondary Education
      • Career and Adult Education and Workforce Development
      • Education Policy, Systems, and Governance
      • Education Research Methodologies
      • Education Technologies
    • International Development
      • Energy for Development
      • Environment
      • Global Food Security, Agriculture, and Nutrition
      • Global Health
      • International Education
      • Monitoring, Evaluation, Research, Learning, and Adapting (MERLA)
      • Youth and Economic Opportunity
      • Building Resilience Against COVID-19 in Developing Countries
      • Water, Sanitation, and Hygiene (WASH)
      • RTI Center for Governance
    • Climate Change
      • Clean Energy Technology and Renewables
      • Climate Finance
      • Climate Justice and Equity
      • Climate Planning, Preparedness and Resilience
      • Climate Policy
      • Climate Vulnerability, Adaptation, and Mitigation
      • Economic Impacts of Climate Change
    • Water
      • Food-Energy-Water Nexus
      • Water Quality
      • WASH (Water, Sanitation, Hygiene)
      • Water Resources Management
    • Energy Research
      • Carbon Capture and Utilization
      • Biomass Conversion
      • Natural Gas
      • Energy Efficiency
      • Industrial Water
      • Syngas Processing
    • Environmental Sciences
      • Air Quality
      • RTI Center for Water Resources
      • Urban Sustainability
      • Toxics
      • Building Resiliency in the FEW Nexus
      • Climate Change Sciences and Analysis
      • Environmental Policy
      • Environmental Justice
      • Sustainable Materials & Waste Management Solutions
    • Justice Research and Policy
      • RTI Center for Community Safety and Crime Prevention
      • RTI Center for Policing Research and Investigative Science
      • Child Well-Being and Family Strengthening
      • RTI Center for Forensic Sciences
    • Food Security and Agriculture
      • Market Systems Strengthening
      • Food Safety
      • Food and Nutrition
      • Global Food Security, Agriculture, and Nutrition
      • Climate-Smart Agriculture
      • Agricultural Innovation
      • Obesity Prevention
    • Innovation Ecosystems
      • Innovation Advising
      • Innovation for Economic Growth
      • Innovation for Emerging and Developing Economies
      • Innovation for Organizations
      • Research, Technology, and Innovation Policy
      • Technology Acceleration
    • Military Support
      • Military Behavioral Health
      • Military Health and Human Performance
      • Military Sexual Assault, Harassment, and Domestic Violence Prevention
      • Wearable Sensor Technologies
      • Military Health System Transformation

    Practice Areas

  • Services + Capabilities
    • Surveys and Data Collection
      • Survey Design
      • Instrument Development
      • Survey Methodologies
      • Data Collection
      • Establishment Surveys
      • Health Registries
      • Data Analysis and Reporting
      • Research Operations Center
    • Statistics and Data Science
      • Survey Statistics
      • Environmental Statistics
      • Coordinating Centers for Multisite Studies
      • Analysis and Design of Complex Data
      • Biostatistics
      • RTI Center for Data Science
    • Evaluation, Assessment and Analysis
      • Evaluation Design and Execution
      • Advanced Qualitative, Quantitative, and Mixed Methods
      • Evaluation, Monitoring, and Assessment
      • Economic Analysis
      • Evaluating Communication Interventions and Campaigns
      • Evidence Synthesis for Policy and Practice
      • Risk Assessment and Prediction
    • Program Design and Implementation
      • Systems Strengthening and Scaling
      • Capacity Assessment and Building
      • Policy Reform Support
      • Curriculum and Teacher Professional Development
      • Interventions and Prevention Programs
      • Implementation Science
    • Digital Solutions for Social Impact
      • Human-Centered Design of Digital Solutions
      • Digital Product Development
      • Digital Communication Campaigns
      • Digital Data Analytics
    • Research Technologies
      • Survey Technologies
      • Data Management and Decision Support Systems
      • Geospatial Science, Technology, and Visualization
      • ICT for Limited-Resource Settings
      • Mobile Applications
      • Web Applications
      • Bioinformatics
      • Interactive Computing
    • Drug Discovery and Development
      • Medicinal Chemistry
      • Molecular Design and Cheminformatics
      • Behavioral Pharmacology
      • Drug Metabolism and Pharmacokinetics (DMPK)
      • In Vitro Pharmacology, Bioassay Development, and High-Throughput Screening (HTS)
      • Isotope Labeling
      • Regulatory Consulting and Support for Medical Products
    • Analytical Laboratory Sciences
      • Bioanalytical and Toxicology Research
      • Forensic Sciences
      • Physicochemical Characterizations
      • Metabolomics
      • Proficiency Testing and Reference Materials
      • Microbiology
      • Analytical Chemistry and Pharmaceutics
    • Engineering & Technology R&D
      • Biomedical Technologies
      • Decarbonization Sciences
      • Environmental Exposure & Protection
      • Materials & Environment
      • Sustainable Energy Solutions

    Services + Capabilities

  • Centers
    • RTI Center for Advanced Methods Development
    • RTI Center for Communication Science
      • Communication Research
      • Communication Design
      • Communication Delivery
    • RTI Center for Data Science
    • RTI Center for Education Services
      • Teaching and Learning
      • Education Leadership
      • Peer Learning Networks
      • Strategic Consulting
    • RTI Center for Forensic Sciences
    • RTI Center for Global Noncommunicable Diseases
      • Program Financing & Economics for NCDs
      • Health Systems Strengthening for NCDs
      • Communication Science and Behavior Change for NCDs
      • Implementation Science for NCDs
    • RTI GenOmics, Bioinformatics, and Translational Research Center
      • Disability Studies
      • Ethics
      • Newborn Screening
    • RTI Center for Water Resources
      • Water Resources Sectors
      • Water Resources Services
      • Water Resources Tools
    • RTI Center for Governance
    • RTI Global Gender Center
    • North Carolina Center for Optimizing Military Performance
    • NCCU-RTI Center for Applied Research in Environmental Sciences
    • RTI Center for Climate Solutions

    Centers

  • Impact
    • Newsroom
    • Insights Blog
    • Events
    • Publications
    • RTI Press
      • About the RTI Press
      • Instructions for Authors
      • RTI Press Collections
    • Projects
    • Global Reach
      • Asia
      • Eastern Europe and Central Asia
      • RTI International India
      • Africa
      • Middle East and North Africa (MENA)
      • Latin America and the Caribbean (LAC)

    Impact

  • Experts
    • Our Experts
    • In-Depth With Our Experts
    • Related News
    • Experts In the Media
    • RTI Fellow Program

    Experts

  • Emerging Issues
    • COVID-19 Research
    • Artificial Intelligence
    • Global Health Security
    • Cannabis Research
    • Opioid Research
      • Interventions for Opioid Use Disorders
      • Preventing Opioid Misuse and Overdose
      • Treating Opioid Use Disorders
    • Policing Research and Investigative Science
    • Drone Research and Application
    • E-cigarette Research
    • Zika Virus Research
    • Integrated Governance

    Emerging Issues

  • COVID-19 Research + Response
  • Global Reach
  • Insights Blog
  • Newsroom
  • RTI Press
  • Publications
  • Partner With Us
  • Careers
  • Facebook IconTwitter IconInstagram IconYouTube IconLinkedin Icon
  • Home
  • Impact
  • RTI Press
  • Perceived, experienced, and internalized cancer stigma

Perceived, experienced, and internalized cancer stigma

Perspectives of cancer patients and caregivers in India

By Linda Squiers, Mariam Siddiqui, Ishu Kataria, Preet K. Dhillon, Aastha Aggarwal, Carla Bann, Molly Lynch, Laura Nyblade.

April 2021 Open Access Peer Reviewed

DOI: 10.3768/rtipress.2021.rr.0044.2104

Check for Updates Download PDF
Squiers, L., Siddiqui, M., Kataria, I., Dhillon, P. K., Aggarwal, A., Bann, C., Lynch, M., & Nyblade, L. (2021). Perceived, experienced, and internalized cancer stigma: Perspectives of cancer patients and caregivers in India. RTI Press. RTI Press Research Report No. RR-0044-2104 https://doi.org/10.3768/rtipress.2021.rr.0044.2104
Copy citation
Share
  • Share on Facebook
  • Share on Twitter
  • Share on Linkedin
  • Email
Key Points
  • First quantitative data on cancer stigma from the patients’ perspective in India, and to the best of our knowledge, the first data on cancer stigma in India from the caregivers’ perspective.
  • Most of the patients and caregivers in our sample reported some level of perceived, experienced, or internalized stigma.
  • Findings also 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.

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.

Creative Commons © 2023 RTI International. This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Contents

  • Introduction
  • Materials and Methods
    • Development of Data Collection Instruments
      • Knowledge of Cancer
        • Cancer Fatalism
          • Assessments of Stigma
            • Perceived Stigma
              • Experienced Stigma
                • Internalized Stigma
                  • Mental Health
                  • Sample
                    • Data Collection Methods
                      • Data Management
                        • Data Analysis
                          • Ethical Approval
                          • Results
                            • Cancer Knowledge and Fatalism
                              • Perceived Stigma
                                • Experienced Stigma
                                  • Internalized Stigma
                                    • Mental Health
                                    • Discussion
                                    • Conclusion
                                    • Acknowledgments
                                    • References

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

                                    By LindaSquiersMariamSiddiquiIshuKatariaPreet K.DhillonAasthaAggarwalCarlaBannMollyLynchLauraNyblade

                                    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. Cancer-related 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. Disease- or 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, in-person 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 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 and Chennai. At the time of the study, 56 total cancer patients were in the cohort: 25 in Chennai and 31 in Delhi. Of these patients, we purposively sampled 20 individuals—10 from Chennai and 10 from Delhi. Respondents were eligible if they (1) had previously reported they had cancer; (2) were between 30–80 years old; (3) were fluent in English, Hindi, or Tamil; (4) were willing and able to participate in an interview; and (5) had a caregiver who also was willing and able to participate in an interview.

                                    Within the CARRS cohort in Delhi, we had difficulty finding enough cancer patients who met all eligibility criteria, especially having a caregiver who was also willing and able to participate. For one cancer patient, the caregiver was a minor and for a second, the caregiver had died. Because the number of people with cancer in the CARRS sample was small, we did not have additional cancer patients to recruit. To ensure we had an equal number of caregivers from Delhi and Chennai, we recruited one caregiver of a patient who had recently passed away and another of a patient who was older than 80 year of age. We used this approach because data were analyzed in aggregate rather than within dyads.

                                    Three attempts were made to reach sampled respondents by telephone by a CARRS cohort study team member. Once an appointment was scheduled, the prospective respondent was contacted by telephone a day in advance to confirm the appointment or, if needed, to reschedule. The cancer patients and their caregivers were interviewed separately. Details of scheduling attempts were maintained in a tracking log.

                                    Data Collection Methods

                                    Trained interviewers conducted in-person interviews in respondents’ households. They received 6 days of training on interviewing methods, informed consent, questionnaire content, and in-depth practice using the questionnaire with the research staff. On the day of the scheduled appointment, the purpose of the study was explained again to the respondent and written informed consent was administered in the local language. The interview was conducted in either Hindi (in Delhi) or Tamil (in Chennai) and audio-recorded. Audio-recordings, field notes, and questionnaires were randomly checked for accuracy and completeness by the field supervisors.

                                    Data Management

                                    Each respondent was assigned a unique study identifier to maintain anonymity. All audio-recordings, scanned copies of field notes, screeners, signed consent forms, and questionnaires were stored on password-protected computers. Survey data were entered manually into Microsoft Excel by a two-member data entry team and checked for quality.

                                    Data Analysis

                                    Survey data were analyzed using SAS version 9.4. Descriptive statistics (frequencies and percentages) were calculated for all three stigma types (perceived, experienced, and internalized stigma). For experienced stigma, scores were calculated for each source group of stigma and for the total combined, with a respondent scored as having a particular type of stigma if they answered yes to at least one of the items measuring that type of stigma. Negatively worded stigma items were reverse scored. We computed Pearson correlations between the different forms of stigma and mental health. Before conducting correlation analyses, we recoded mental health scores so that a higher mental health score indicated more positive (better) mental health and lower score meant more negative (worse) mental health.

                                    Ethical Approval

                                    This study was approved by the ethics Institutional Review Boards of RTI International, the Public Health Foundation of India, and CCDC.

                                    Results

                                    Of the 20 patients contacted to participate in this study, three declined to participate. To replace those three individuals, we re-examined the roster of the remaining cancer patients in the registry and selected an alternate who most closely matched the characteristics of the originally sampled patient in terms of location, sex, age, and cancer type. The final sample included 20 patients and caregivers, with 10 from Chennai and 10 from New Delhi.

                                    Background information on the sample is summarized in Table 1. The patient sample was 60 percent female and relatively evenly distributed across age categories. Most patients were married (60 percent) or widowed (35 percent). Most patients (85 percent) had some secondary school or a higher level of education. Caregivers had similar demographic characteristics as the patients, except that half of caregivers reported not being covered by health insurance.

                                    Sociodemographic characteristics of patients and caregivers
                                    Characteristic Patient (N = 20)
                                    n (%)
                                    Caregiver (N = 20)
                                    n (%)
                                    Cancer type
                                       Breast    10 (50)    N/A
                                       Intestinal or stomach    2 (10)    N/A
                                       Throat, thyroid, tongue    5 (25)    N/A
                                       Uterine    1 (5)    N/A
                                       Unknown    2 (10)    N/A
                                    Age (years)
                                       30–39    3 (15)    6 (30)
                                       40–49    2 (10)    4 (20)
                                       50–59    5 (25)    6 (30)
                                       60–69    5 (25)    3 (15)
                                       70–79    5 (25)    1 (5)
                                    Sex
                                       Male    8 (40)    9 (45)
                                       Female    12 (60)    11 (55)
                                    Marital status
                                       Never married/single    0 (0)    1 (5)
                                       Married    12 (60)    17 (85)
                                       Widow/widower    7 (35)    2 (10)
                                       Divorced/separated    1 (5)    0 (0)
                                    Employment
                                       At home doing housework    11 (55)    10 (50)
                                       Unemployed    1 (5)    0 (0)
                                       Unskilled laborer/farming/skilled laborer    1 (5)    2 (10)
                                       Professional    1 (5)    4 (20)
                                       Self-employed    2 (10)    2 (10)
                                       Other    4 (20)    2 (10)
                                    Education
                                       Unable to read and write, illiterate    1 (5)    0 (0)
                                       Up to primary school    2 (11)    2 (10)
                                       Secondary school    5 (26)    2 (10)
                                       Senior secondary school    7 (37)    8 (40)
                                       Graduate    6 (21)    5 (25)
                                       Professional degree/postgraduate    0 (0)    3 (15)
                                    How often able to meet basic needs in past 12 months
                                       Never    0 (0)    0 (0)
                                       Some of the time    2 (11)    5 (25)
                                       Always    16 (89)    15 (75)
                                    How often able to afford essential needs in past 12 months
                                       Never    0 (0)    0 (0)
                                       Some of the time    6 (33)    8 (40)
                                       Always    12 (67)    12 (60)
                                    Insurance
                                       Not covered    4 (20)    10 (50)
                                       Employees State Insurance Scheme    1 (5)    1 (5)
                                       Central Government Health Scheme    3 (15)    4 (20)
                                       Community Health Insurance Programme    0 (0)    1 (5)
                                       Other health insurance through employer    0 (0)    1 (5)
                                       State Health Insurance Scheme    1 (5)    0 (0)
                                       Other privately purchased commercial health insurance    0 (0)    0 (0)
                                       Other    9 (45)    3 (15)
                                       Don’t know    2 (10)    0 (0)
                                    Patient is under your insurance
                                       Yes    N/A    7 (35)
                                       No    N/A    10 (50)
                                       Don’t know    N/A    1 (5)
                                       Not applicable    N/A    2 (10)
                                    Doctor told family about the diagnosis before you were told
                                       Yes    8 (40)    N/A
                                       No    12 (60)    N/A
                                    Who told you about the diagnosis
                                       Doctor    17 (85)    N/A
                                       Spouse    2 (10)    N/A
                                       Child    0 (0)    N/A
                                       Other    1 (5)    N/A
                                    N/A = not applicable.

                                    Cancer Knowledge and Fatalism

                                    Before their own diagnosis, 80 percent of patients reported knowing nothing about how to prevent cancer, and 75 percent knew nothing about different ways cancer could be treated. Most of the 20 patient respondents (85 percent) agreed they felt they had cancer because it was their destiny, compared with 40 percent of the 20 caregivers. Almost all patients (90 percent) agreed that there was nothing they could have done to prevent themselves from getting cancer, compared with 55 percent of caregivers.

                                    Perceived Stigma

                                    The proportion of patients and caregivers who perceived there was stigma toward people with cancer in their community was similar, except for two items: more patients (65 percent) reported that neighbors are typically not told if someone has cancer compared with caregivers (36 percent); and more patients (40 percent) than caregivers (25 percent) agreed that beliefs about how or why people get cancer make it difficult for them to get healthcare (Table 2). Overall, 85 percent of patients and 65 percent of caregivers agreed to least one measure of perceived stigma (Table 3).

                                    Perceived, experienced, and internalized stigma by the patient and their caregiver
                                    Questionnaire Item Percent with Stigma
                                    Patient Caregiver
                                    n/N (%) n/N (%)
                                    Perceived
                                    Stigma
                                    Are people in your community afraid that cancer can spread from person to person? Response = Yes 4/16 (25) 5/16 (31)
                                    Do people in the community think that cancer is a curse or result of past sins? Response = Yes 4/16 (25) 6/17 (35)
                                    If someone in your community has cancer, do they typically tell the neighbors? Response = No 11/17 (65) 5/14 (36)
                                    Do people in the community avoid talking or eating with a person having cancer? Response = Yes 3/18 (17) 5/16 (31)
                                    Beliefs about how or why people get cancer make it difficult for [me/the patient’s name] to get healthcare. Response = Agree or Strongly Agree 8/20 (40) 5/20 (25)
                                    Beliefs about how or why people get cancer make it difficult for me to tell others [I/the patient] have cancer. Response = Agree or Strongly Agree 3/20 (15) 3/20 (15)
                                    If people in my community found out [I/patient’s name] had cancer, I would no longer be respected. Response = Agree or Strongly Agree 4/20 (20) 2/19 (11)
                                    Experienced
                                    Stigma
                                    Family and Community
                                    Please indicate whether you have also had these experiences because you have had cancer.
                                    Have you ever been excluded from social or work gatherings or activities—for example, weddings, funerals, parties, clubs? 0/19 (0) 0/20 (0)
                                    Have you ever been excluded from religious activities or places of worship? 0/18 (0) 0/20 (0)
                                    Have you ever been excluded from meals or activities where only family is invited? 0/20 (0) 0/20 (0)
                                    Have you ever been aware of family members making discriminatory remarks or gossiping about you? 3/20 (15) 0/20 (0)
                                    Has someone ever verbally harassed you—for example, yelled, scolded, or was otherwise verbally abusive? 1/20 (5) 0/20 (0)
                                    Has someone ever physically harassed or hurt you or was otherwise physically abusive? 0/20 (0) 0/20 (0)
                                    Has anyone ever said they were worried they might contract cancer from [you/patient’s name]? 5/20 (25) 1/20 (5)
                                    Healthcare
                                    Have you ever been denied healthcare? 0/20 (0) N/A
                                    Have you ever been denied health insurance? 4/16 (25) N/A
                                    Employment
                                    Have you ever lost a job or a source of income? 5/8 (63) 3/12 (25)
                                    Internalized Stigma I don’t* feel comfortable telling others about [my/patient’s name] disease. 4/19 (21) 6/20 (30)
                                    I hide that [I have/patient’s name has] cancer from others. 2/20 (10) 4/20 (20)
                                    I often avoid social gatherings because [I have/patient’s name has] cancer. 4/20 (20) 2/20 (10)
                                    I feel ashamed [I have/patient’s name] has cancer 6/20 (30) 0/20 (0)
                                    Term added because item was reverse coded so that agreeing with the statement indicated stigma. N/A = not applicable.
                                    Note: Percentages are based on the number of respondents who provided an answer to each question.
                                    Percentage of participants experiencing each type of stigma (answered yes to at least one of the items for each type of stigma)
                                    Types of Stigma Experienced (Yes to at least one item) Patients
                                    (N = 20)
                                    Caregivers
                                    (N = 20)
                                    n % (95% CI) n % (95% CI)
                                    Perceived stigma 17 85 (62–97) 13 65 (41–85)
                                    Experienced stigma (excluding healthcare) 9 45 (23–68) 4 20 (6–44)
                                    Experienced stigma (including healthcare) 12 60 (36–81) N/A N/A
                                    Family and community 6 30 (12–54) 1 5 (0–25)
                                    Healthcare 4 20 (6–44) N/A N/A
                                    Employment 5 63 (24–91) 3 25 (5–57)
                                    Internalized stigma 7 35 (15–59) 7 35 (15–59)
                                    Overall 17 85 (62–97) 15 75 (51–91)
                                    CI = confidence interval; N/A = not applicable.
                                    Note: Percentages are based on the number of respondents who provided an answer to each question. CIs are based on a Fisher’s exact test.

                                    Experienced Stigma

                                    Across the three dimensions assessed for experienced stigma, 60 percent of patients reported having experienced at least one form of stigma because of having cancer (Table 3), whereas 30 percent of patients reported experiencing at least one form of stigma from family or community members, with most stigmatizing experiences being from family or friends. One-quarter of patients reported having had someone say they were worried they might contract cancer from them, and 15 percent reported they had been aware of discriminatory remarks that family members had made about them because of their cancer. Although no patient reported being denied healthcare because they had cancer, 25 percent reported being denied health insurance because they had cancer (Table 2).

                                    Internalized Stigma

                                    Overall, 35 percent of patients and caregivers endorsed at least one measure of internalized stigma (Table 3). Although 30 percent of patients reported feeling ashamed they had cancer, no caregiver said they felt ashamed of the patient for having cancer (Table 2).

                                    Mental Health

                                    As a result of having cancer, 40 percent of patients reported having little interest or taking pleasure in doing things; 30 percent felt nervous, anxious, or on edge; 30 percent felt they could not stop or control worrying; and 15 percent felt down, depressed, or hopeless either several times or most of the time in the past 2 weeks (Table 4).

                                    Patients’ self-reported mental health as a result of cancer
                                    Over the past 2 weeks, how often have you been bothered by any of the following problems as a result of having cancer? Never
                                    (N = 20)
                                    n (%)
                                    Once or twice
                                    (N = 20)
                                    n (%)
                                    Several times
                                    (N = 20)
                                    n (%)
                                    Most of the time
                                    (N = 20)
                                    n (%)
                                    Total
                                    n (%)
                                    Feeling nervous, anxious, or on edge 11 (55) 3 (15) 2 (10) 4 (20) 20 (100)
                                    Not being able to stop or control worrying 12 (60) 2 (10) 4 (20) 2 (10) 20 (100)
                                    Little interest or pleasure in doing things 11 (55) 1 (5) 2 (10) 6 (30) 20 (100)
                                    Feeling down, depressed, or hopeless 14 (70) 3 (15) 0 (0) 3 (15) 20 (100)
                                    Note: Percentages are row percentages and based on the number of respondents who provided an answer to each question.

                                    Correlations between each type of stigma and mental health showed that internalized stigma seemed to be negatively associated with overall mental health (Table 5). Specifically, having any internalized stigma seemed to have a moderate association with feeling nervous and anxious, uncontrolled worrying, and feelings of depression and hopelessness. Given the small sample size, it was not possible to test for statistical significance.

                                    Correlations between stigma and social support and mental health: patients only
                                    Variable Perceived Stigma
                                    (r)
                                    Experienced Stigma
                                    (excluding healthcare)
                                    (r)
                                    Experienced Stigma
                                    (including healthcare)
                                    (r)
                                    Internalized Stigma
                                    (r)
                                    Mental Health
                                    Overall mental health −0.27 −0.11 −0.16 −0.53
                                       Feeling nervous, anxious or on edge −0.29 −0.12 −0.14 −0.46
                                       Not being able to stop or control worrying −0.45 −0.25 −0.24 −0.56
                                       Little interest or pleasure in doing things −0.01 0.09 0.03 −0.18
                                       Feeling down, depressed, or hopeless −0.10 −0.08 −0.17 −0.46
                                    Note: Bolded correlations have moderate [r = 0.3]19 correlations.

                                    Discussion

                                    Very few studies have assessed the degree to which patients in India feel stigmatized because of their cancer diagnosis.3–5,20 Although limited by the small sample size, this exploratory pilot study provides some of the first quantitative data on cancer stigma from the patients’ perspective in India and, to the best of our knowledge, the first data on cancer stigma in India from the caregivers’ perspective.

                                    We found that cancer-related stigma is common, as measured by agreeing with at least one statement within each type of stigma, among both patients (85 percent) and caregivers (75 percent). Among the different types of stigma measured (i.e., perceived, experienced, and internalized), perceived stigma within the community was noted most frequently. These results are consistent with other studies on perceived cancer stigma in India. For example, fear of casual transmission of cancer through day-to-day interaction, which was linked to social and physical isolation of patients, has been documented in qualitative studies in India.9,10,12,21 In our study, one-quarter of patients (25 percent) and almost one-third of caregivers (31 percent) perceived that people in the community are afraid cancer can spread from person to person. In addition, a substantial proportion of participants (17 percent of patients and 31 percent of caregivers) perceived that people in the community avoided talking or eating with a person who has cancer. One-quarter of patients (25 percent) reported that someone had told them they were worried they might contract cancer from them, illustrating that the perceived stigma is grounded in lived experience.

                                    Qualitative studies in India have documented the belief that cancer is something one brings upon oneself because of behavior in this or prior life.9,10 We found that one-quarter of patients (25 percent) and over one-third of caregivers (35 percent) perceived that people in the community believe that cancer is a curse or the result of past sins, which may be the source of perceived, experienced, and internalized stigma. Future studies should explore whether these beliefs are at the root of cancer stigma and if messages to dispel them would be accepted within different religions and subcultures in India.

                                    We observed that the majority of patients (85 percent) experienced at least one form of stigma and that over one-third of both patients and their caregivers (35 percent) endorsed at least one internalized stigma item. Our results also suggest that there may be a relationship between internalized stigma and poor mental health among patients. Although this study was unable to determine a causal linkage, future work should explore this potential association, especially in countries such as India where fatalistic beliefs about cancer are prevalent. Understanding the relationship between fatalistic views, internalized stigma, and mental health could help identify relevant modifiable risk factors for stigma and stigma-related mental health problems and inform the development of interventions to support cancer patients before, during, and after treatment.

                                    Although caregivers reported cancer-related stigma within their communities, they generally did not report being personally stigmatized as a result of being a caregiver. Nevertheless, 30 percent still said they did not feel comfortable telling others that they provide care to a cancer patient, and 20 percent hid that the person for whom they cared had cancer. This finding may suggest that caregivers either feared the reactions from others or believed that it is socially unacceptable to discuss someone else’s cancer. Reasons should be clarified in future research.

                                    The most notable limitation of this exploratory pilot study is that it relied on a sample of convenience and had limited statistical power. It is also worth noting that the CARRS cohort (a part of the National Institutes of Health 2-year planning grant to develop a Regional Centers of Research Excellence in Non-communicable Diseases in India [P20]) recruited from urban populations; therefore, the results may not apply to rural populations in India. Additionally, although the length of time since cancer diagnosis among participating patients varied, the small sample size did not allow assessment as to how this factor might influence perceived, experienced, and internalized stigma. Finally, we adapted stigma measurement from other stigmatized conditions because of a lack of validated cancer stigma scales for India. Future studies should evaluate the instruments used for validity and reliability for assessment of cancer stigma in India. The applicability of certain questions and measures across disease conditions suggests common platforms for addressing stigma for conditions such as HIV and cancer.

                                    Despite its limitations, this exploratory pilot study provides some of the first quantitative findings on cancer stigma in India and confirms some of the themes that have emerged from qualitative studies on cancer stigma. It also demonstrates the potential utility of measuring cancer stigma quantitatively.

                                    Conclusion

                                    Cancer-related stigma in India should continue to be studied to determine its prevalence, root causes, and influence on disease prognosis, quality of life, and treatment 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 Associate Editor: Emilia Peytcheva

                                    References

                                    1Bray F, Ferlay J, Soerjomataram I, Siegel RL, Torre LA, Jemal A. Global cancer statistics 2018: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J Clin 2018;68(6):394–424. 10.3322/caac.2149230207593
                                    2Cancer India. Globocan 2018: India factsheet. 2018; http://cancerindia.org.in/globocan-2018-india-factsheet/. Accessed December 17, 2018.
                                    3Krishnan S, Sivaram S, Anderson BO, Basu P, Belinson JL, Bhatla N et al. Using implementation science to advance cancer prevention in India. Asian Pac J Cancer Prev 2015;16(9):3639–44. 10.7314/APJCP.2015.16.9.363925987015
                                    4Hatzenbuehler ML, Phelan JC, Link BG. Stigma as a fundamental cause of population health inequalities. Am J Public Health 2013;103(5):813–21. 10.2105/AJPH.2012.30106923488505
                                    5Weiss MG, Ramakrishna J. Stigma interventions and research for international health. Lancet 2006;367(9509):536–8. 10.1016/S0140-6736(06)68189-016473134
                                    6Babu GR, Lakshmi SB, Thiyagarajan JA. Epidemiological correlates of breast cancer in South India. Asian Pac J Cancer Prev 2013;14(9):5077–83. 10.7314/APJCP.2013.14.9.507724175779
                                    7Ahmed R, Tripathy L, Datta SS, Agrawal S, Chatterjee S. P041. Correlates of body image difficulties following breast cancer surgery [EJSO]. Eur J Surg Oncol 2015;41(6):S38. 10.1016/j.ejso.2015.03.079
                                    8Tripathi L, Datta SS, Agrawal SK, Chatterjee S, Ahmed R. Stigma perceived by women following surgery for breast cancer. Indian J Med Paediatr Oncol 2017 Apr-Jun;38(2):146–52.28900322
                                    9Nyblade L, Stockton M, Travasso S, Krishnan S. A qualitative exploration of cervical and breast cancer stigma in Karnataka, India. BMC Womens Health 2017;17(1):58. 10.1186/s12905-017-0407-x28768506
                                    10Kaur R. Cultural beliefs, cancer and stigma: experiences of patients from Punjab (India). Stud Ethno-Med 2015;9(2):247–54. 10.1080/09735070.2015.11905442
                                    11Dey S, Sharma S, Mishra A, Krishnan S, Govil J, Dhillon PK. Breast cancer awareness and prevention behavior among women of Delhi, India: Identifying barriers to early detection. Breast Cancer (Auckl) 2016;10:147–56. 10.4137/BCBCR.S4035827789957
                                    12Ray K, Mandal S. Knowledge about cancer in West Bengal - a pilot survey. Asian Pac J Cancer Prev 2004 Apr-Jun;5(2):205–12.15244526
                                    13Krishnan S, Dhillon PK, Bhadelia A, Schurmann A, Basu P, Bhatla N et al. Report from a symposium on catalyzing primary and secondary prevention of cancer in India. Cancer Causes Control 2015;26(11):1671–84. 10.1007/s10552-015-0637-x26335262
                                    14Visser MJ, Kershaw T, Makin JD, Forsyth BW. Development of parallel scales to measure HIV-related stigma. AIDS Behav 2008;12(5):759–71. 10.1007/s10461-008-9363-718266101
                                    15Dos Santos MM, Kruger P, Mellors SE, Wolvaardt G, van der Ryst E. An exploratory survey measuring stigma and discrimination experienced by people living with HIV/AIDS in South Africa: the People Living with HIV Stigma Index. BMC Public Health 2014;14(1):80. 10.1186/1471-2458-14-8024461042
                                    16Global Network of People Living with HIV. About the stigma index. n.d.; https://www.stigmaindex.org/about-the-stigma-index/what-is-the-people-living-with-hiv-stigma-index/.
                                    17Kroenke K, Spitzer RL, Williams JB, Löwe B. An ultra-brief screening scale for anxiety and depression: the PHQ-4. Psychosomatics 2009 Nov-Dec;50(6):613–21.19996233
                                    18Stanhope J. Patient Health Questionnaire-4. Occup Med (Lond) 2016;66(9):760–1. 10.1093/occmed/kqw16527994085
                                    19Cohen J. Statistical power analysis for the behavioral sciences. 2nd ed. Hillsdale (NJ): Lawrence Erlbaum Associates; 1988.
                                    20Shet AS, Krishnan S, Travasso SM, Raju G, Meleth S, Kumar S. Social-ecological perspectives on breast cancer care seeking patterns in Karnataka, India. J Clin Oncol 2015;33(15_suppl):6542. 10.1200/jco.2015.33.15_suppl.6542
                                    21Broom A, Doron A. The rise of cancer in urban India: cultural understandings, structural inequalities and the emergence of the clinic. Health (London) 2012;16(3):250–66. 10.1177/136345931140394921602247

                                    Click cover to download publication

                                    Keep Exploring

                                    • icon-externallink-blue Created with Sketch.

                                      HTML version [Scholastica]

                                    Sustainable Development Goals

                                    • Goal 3: Good Health and Well Being
                                    • Goal 5: Gender Equality
                                    • Goal 4: Quality Education

                                    Contact

                                    To contact an author or seek permission to use copyrighted content, contact our editorial team

                                    • +1 919 541 6490
                                    • rtipress@rti.org

                                    Meet the Experts

                                    View All Experts
                                    Ishu Kataria

                                    Ishu Kataria

                                    Laura Nyblade

                                    Laura Nyblade

                                    Dr. Linda Squiers

                                    Linda Squiers

                                    Carla M. Bann

                                    Related Publications

                                    View All Press
                                    OCCASIONAL PAPER

                                    Bringing an equity-centered framework to research

                                    OCCASIONAL PAPER

                                    Culturally informed community engagement

                                    RESEARCH REPORT

                                    Substance misuse prevention program attendance

                                    RESEARCH BRIEF

                                    COVID-19’s impact on clinical research

                                    OCCASIONAL PAPER

                                    Social determinants of health

                                    OCCASIONAL PAPER

                                    Challenges facing CAHPS surveys and opportunities for modernization

                                    RESEARCH REPORT

                                    Artificially intelligent social risk adjustment

                                    OCCASIONAL PAPER

                                    The need for a diverse environmental justice workforce

                                    Recent Publications

                                    View All Press
                                    OCCASIONAL PAPER

                                    Bringing an equity-centered framework to research

                                    OCCASIONAL PAPER

                                    The Preschool Entitlement

                                    OCCASIONAL PAPER

                                    Culturally informed community engagement

                                    RESEARCH REPORT

                                    Substance misuse prevention program attendance

                                    RTI Logo
                                    Partner With Us
                                    • US Government
                                    • Commercial
                                    • Foundations & Associations
                                    • Multilateral Donors
                                    • Universities
                                    • Suppliers
                                    Site
                                    • Privacy Policy
                                    • Security Policy
                                    • Site Map
                                    • Terms of Use
                                    • Accessibility
                                    • Contact Us
                                    Contact Us
                                    Facebook Icon Twitter Icon Instagram Icon YouTube Icon Linkedin Icon
                                    delivering the promise of science
                                    for global good
                                    RTI Health Solutions RTI Innovation Advisors RTI Health Advance

                                    © 2023 RTI International. RTI International is a trade name of Research Triangle Institute. RTI and the RTI logo are U.S. registered trademarks of Research Triangle Institute.