Global Cancer Stigma
, by Katie Heley, Ph.D., M.P.H. and Robin Vanderpool, Dr.P.H., (Division of Cancer Control and Population Sciences)
Stigma is a powerful social process characterized by labeling certain human differences (e.g., characteristics, health conditions) as socially undesirable and linking them with negative stereotypes, leading to loss of status among and discrimination towards labeled individuals.1 Stigma occurs across the cancer control continuum and can affect individuals at risk for cancer, cancer patients and survivors, as well as caregivers and family members.2 Cancer stigma can arise from various sources, including cultural and religious beliefs, public and healthcare provider misconceptions, and media portrayals that propagate negative stereotypes.
Individuals affected by cancer stigma often experience guilt, social isolation, and avoidance, which can impede preventive health-seeking behaviors, screening and treatment adherence, and engagement with care,2, 3 leading to worse health outcomes and a reduction in quality of life. As such, cancer stigma exerts profound effects on cancer incidence, morbidity, and mortality worldwide.4 As advocated by The Union for International Cancer Control (UICC), understanding and addressing cancer stigma is critical to improve the health outcomes of individuals affected by cancer, enhance public health efforts in cancer prevention and control, promote health equity, and ultimately reduce global cancer burden.5
Recommendations for Researchers
Evaluate the role of culture, context, and societal-level factors in perpetuating and mitigating stigma.
Include, engage, and learn from diverse stakeholders with lived experience. Stigma research should include an inclusive, adaptive, and collaborative approach to community engagement and center around constituent voices with lived experience.
Incorporate broad measurements and cancer site-specific stigma scales in research efforts. Broad measurements assess general attitudes and beliefs about cancer and can be used in applied public health campaigns, whereas cancer site-specific stigma scales capture unique challenges within individual settings and aid in developing tailored research interventions.
Maintain the rigor of stigma measurement while incorporating cultural dynamics in diverse global settings. Stigma measurement instruments must be accurate, culturally sensitive, and consider diverse cultural beliefs without introducing or reinforcing cultural or linguistic biases.
Consider cancer stigma as a driver of cancer health inequities globally. Addressing cancer stigma as an equity issue is a vital step toward improving outcomes for all individuals affected by the disease.
Resources to Learn More
- National Cancer Institute's (NCI) Global Cancer Stigma Research Workshop
- Global Cancer Stigma: Research, Practice, and Priorities
- Health Communication and Informatics Research Branch (HCIRB) Research Priority: Cancer Stigma
- The World Cancer Declaration (target 5 is focused on stigma)
- The Crucial Role of Research in Addressing Global Cancer Stigma
Acknowledgements
We appreciate valuable feedback from Dr. Vidya Vedham (NIMH), Dana Chomenko (BLH Technologies, Inc.), and Amanda Klein (Strategix Management).
References
- Link BG, & Phelan JC. Conceptualizing stigma. Annual review of Sociology, 2001.
- Heley K, Vanderpool RC, & Vedham V. Global cancer stigma research: A U.S. National Cancer Institute workshop report. JNCI Monographs, 2024.
- Fujisawa D & Hagiwara N. Cancer stigma and its health consequences. Current Breast Cancer Reports, 2015.
- Hamann HA, Ver Hoeve ES, Carter-Harris L, Studts JL, & Ostroff JS. Multilevel opportunities to address lung cancer stigma across the cancer control continuum. Journal of Thoracic Oncology, 2018.
- The Union for International Cancer Control (UICC). World Cancer Declaration 2013 (pdf, 374 KB).