The Crucial Role of Research in Addressing Global Cancer Stigma

September 9, 2024, by Katie Heley, Robin Vanderpool, Dana Chomenko, Amanda Klein, and Vidya Vedham

“…if that person [with cancer] hasn’t had a family…it will be harder to get married to healthy normal people.” (Eschliman et al., 2024)  

“Among the community, cancer survivors are perceived as ‘walking dead,’ disabled, and weak.” (Global Cancer Stigma Research Workshop, 2022) 

“The woman [with cancer] becomes a victim of stigma by her family, relatives, colleagues and is judged by her physical appearance. At worst, she is abandoned, most often by her husband, fired from her job, driven into debt to support herself, denied medical insurance, salary increases, and loses her responsibilities, promotion, and benefits when she returns to work.” (Johnson & Samson, 2024) 

“People with cancer…the employers find out that they have cancer then they must definitely stop working. Because the disease makes them unable to work, for example, so they cannot do hard work, for example, or cannot meet the assigned quota or target. They are fired.” (Eschliman et al., 2024)

Cancer Stigma: Scope and Impact on Cancer Control

As poignantly illustrated by the quotes above – collected from cancer patients, survivors, advocates, and community members around the world – stigma is a complex and powerful social process that involves labeling certain human characteristics as socially undesirable, often associating them with negative stereotypes. This process often leads to a loss of status and discrimination, among other negative consequences, against those who are labeled (4). Unfortunately, individuals at-risk of cancer, cancer patients and survivors, caregivers, and family members encounter varying levels of stigma throughout their care journey (5). This stigma can arise from various factors, including public and healthcare provider misconceptions, cultural and religious beliefs, and media portrayals that further reinforce negative stereotypes.

Cancer stigma continues to be a major challenge for cancer prevention and control efforts, exerting profound effects on cancer incidence, morbidity, and mortality worldwide (5). It can impede preventive health-seeking behaviors, screening, treatment adherence, and care engagement. Individuals affected by cancer stigma often experience guilt, social isolation, and avoidance, which can worsen health outcomes and reduce their quality of life. We believe addressing cancer stigma is critical for improving the health and wellbeing of individuals affected by cancer as well as for enhancing cancer prevention and control efforts broadly. 

The U.S. National Cancer Institute Efforts

Despite its significant impact, cancer stigma remains under-researched, with minimal attention given to the topic, insufficient measurement instruments, and a shortage of evidence-based mitigation interventions. In response, over the past several years, the National Cancer Institute (NCI) has implemented an international workshop, a special issue of a leading cancer journal, and a series of funding opportunities, all aimed at supporting researchers and practitioners in advancing the global field of cancer stigma research.

NCI’s Global Cancer Stigma Research Workshop 

The first of these efforts took place in September 2022 when NCI's Center for Global Health (CGH) and the Division of Cancer Control and Population Sciences (DCCPS) hosted NCI’s Global Cancer Stigma Research Workshop. For this two-day virtual event, we brought together over 100 participants from five continents, including researchers, cancer survivors, advocates, clinicians, and representatives from non-governmental and governmental organizations. Through the workshop, focused on the intersection of cancer and stigma, we aimed to emphasize the impact of stigma on global cancer control; foster the exchange of ideas within the cancer stigma research community; and highlight domestic and global cancer stigma research to identify potential research gaps for stigma measurement and the development of context-specific stigma reduction interventions.

As shown in the figure below, key areas of focus included cancer stigma manifestations and types, drivers and contributors, impacts and consequences, measurement, interventions, and resilience. In addition, workshop participants identified research gaps and priority areas resulting in several calls to action for the cancer stigma research community, including the need to further conceptualize cancer stigma in global contexts; develop and implement inclusive research approaches; expand research methodologies; and promote collaboration among stakeholders.

JNCI Monographs: Global Cancer Stigma: Research, Practice, and Priorities

Building on the momentum from the workshop, we sought to develop a research monograph to further highlight the diverse efforts in cancer stigma research and to allow academic partners, health providers, trainees, advocates, and community members to engage with these ideas. Released in June 2024, a special issue of JNCI Monographs titled Global Cancer Stigma: Research, Practice, and Priorities is a collection of peer-reviewed articles showcasing efforts to understand, measure, and address cancer stigma across global communities – including Vietnam, Nigeria, and Kenya – as well as to consider identified research gaps and opportunities including:

• Conceptualizing Cancer Stigma in Global Contexts: Eschliman et al. report on findings from in-depth interviews in Vietnam and the application of the “What Matters Most” framework, recognizing that achieving and maintaining cultural capabilities, such as staying employed, can alleviate some of the negative effects of stigma.

• Measuring Cancer Stigma: Studts et al. focus on the operationalization and measurement of stigma and conclude that mitigating stigma toward individuals with a history of smoking may be critical to ensuring unbiased care and fostering broader health system improvement

• Mitigation Strategies: Banerjee et al. report on an adaptation of an empathic communication skills training intervention and the implementation of a pilot feasibility study among oncology clinicians in Nigeria.

• Broader Implications and Recommendations: Representatives of the Union for International Cancer Control highlight the need for policy and country-level changes to reduce cancer stigma. 

The efforts highlighted in this special issue illustrate the complexity of studying cancer stigma and the necessity of a multifaceted approach. It is our hope that these articles spark innovative ideas for future research efforts and practice improvements. 

Funding Opportunities

In addition to hosting an international meeting and publishing a special issue, we continue to prioritize related funding opportunities for the extramural research community. Historical efforts include participating in the Fogarty International Center’s funding opportunity (R21, R01) on “Interventions for Stigma Reduction to Improve HIV/AIDS Prevention, Treatment and Care in Low- and Middle- Income Countries” (LMICs) (2017-present). In fiscal years 2021 and 2023, CGH published a series of administrative supplements (“NOSI: Administrative Supplement Opportunity to Support Global Cancer Stigma Research”) to support one-year exploratory research studies to expand the current understanding of cancer stigma, assess its impact on cancer prevention and control, and develop stigma-reduction interventions to improve cancer outcomes in LMICs. Notable among our upcoming efforts is the release of two funding opportunities (R01, R21) focused on the confluence of HIV stigma and cancer stigma among individuals with a dual diagnosis of HIV and cancer. These cancer stigma-related funding opportunities contribute to our broader goal of cultivating innovative research in global cancer prevention and control. 

Conclusion

Addressing cancer stigma in global communities requires a comprehensive and inclusive approach that encompasses diverse perspectives and strategies. By advancing the understanding, measurement, and mitigation of cancer stigma, the cancer research community can work toward reducing the global cancer burden and promoting health equity, ultimately improving quality of life and survival rates worldwide. We are committed to actively engaging with key stakeholders to drive research and practice in this critical area, ensuring that these efforts are impactful and responsive to the needs of the global communities they serve.