Global cancer stigma research: a U.S. National Cancer Institute workshop report

Abstract

Stigma is a social process characterized by negative beliefs, attitudes, and stereotypes associated with a specific attribute or characteristic that leads to discrimination and social exclusion. Stigma manifests across the cancer control continuum and remains a key challenge for cancer prevention and control worldwide. In this commentary, we provide an overview of the U.S. National Cancer Institute’s (NCI) Global Cancer Stigma Research Workshop, a multi-disciplinary international conference held virtually in September 2022, which focused on the intersection of cancer and stigma. The meeting was unique in its convening of researchers, advocates, clinicians, and non-governmental and governmental organizations, who—as a collective—provided overarching topics, cross-cutting considerations, and future directions for the cancer stigma research community to consider, which we describe herein. In summary, studying cancer stigma comprehensively requires a holistic, adaptive, and multifaceted approach—and should consider interrelated factors and their intersection within diverse cultural and social contexts worldwide. Collectively, there was a call for: an inclusive approach, encouraging researchers and practitioners to identify and measure cancer stigma as a driver for cancer health inequities globally; an expansion of existing research methodology to include diversity of experiences, contexts, and perspectives; and collaborations among diverse stakeholders to develop more effective strategies for reducing stigma and improving cancer outcomes. Such efforts are essential to cultivating effective and equitable approaches to preventing and treating cancer worldwide.

Cancer stigma: importance and impact on global cancer burden

Cancer is a leading cause of death, responsible for nearly one in six deaths worldwide (1). Up to 70% of these deaths occur in low- and middle-income countries (LMICs), with a significant proportion considered preventable and screenable (1). Stigma, as defined by sociologist Erving Goffman in his seminal work, is “an attribute that is deeply discrediting” (2). In addition, stigma is recognized as a powerful social process characterized by distinguishing and labeling certain human differences (eg, characteristics, health conditions) as socially undesirable and linking them with negative stereotypes, which in turn leads to loss of status among and discrimination towards labeled individuals (3). Stigma affects a diversity of cancer patients and their families, communities, and cultures worldwide. Cancer stigma can result from a range of factors such as misconceptions, cultural and religious beliefs, and media portrayals that reinforce stereotypes. It can manifest in various ways, including fatalistic cancer beliefs, blaming of an individual for their illness, avoidance or isolation of cancer patients, and discrimination in various aspects of life including employment, treatment, and relationships. Importantly, these manifestations have significant social, psychological, and health-related implications for individuals, families, and communities affected by cancer worldwide. Reflecting the importance of stigma in understanding and addressing the global cancer burden, the World Cancer Declaration identifies reducing stigma and dispelling harmful myths as one of nine targets to be achieved by 2025 (4). Despite the recognition of cancer stigma reduction as a global target, cancer stigma research remains a nascent field with limited tools to rigorously and reproducibly identify and measure cancer stigma in diverse contexts and few evidence-based interventions to mitigate cancer stigma. Therefore, addressing cancer stigma is crucial to improve the health outcomes of individuals affected by cancer and enhance public health efforts in cancer prevention and control.

The National Cancer Institute’s (NCI) Global Cancer Stigma Research Workshop

In September 2022, the United States (U.S.) National Cancer Institute (NCI) hosted a Global Cancer Stigma Research Workshop (5). This virtual, 2-day meeting brought together members of the global cancer extramural research and advocacy communities and featured more than 25 speakers including cancer survivors, advocates, clinicians, researchers, and non-profit and governmental organizations (see Supplemental Material for the workshop agenda). Workshop speakers were selected in several ways including the identification of: NIH/NCI cancer stigma grantees through the publicly available NIH RePORTER database (https://reporter.nih.gov/); cancer stigma researchers and scholars; representatives of domestic and international cancer advocacy organizations; and NCI staff managing global health, behavioral science, and cancer survivorship programs. Over 100 participants, representing five continents, contributed to the workshop’s goals of: 1) underscoring the impact of stigma on global cancer control; 2) fostering the exchange of ideas with the cancer stigma research community; and 3) highlighting domestic and global cancer stigma research to identify potential research gaps for stigma measurement and the development of context-specific stigma reduction interventions.

In line with prior NCI workshop reports (6-8), this manuscript serves as a summary of key discussion points and recommendations from the virtual workshop sessions. Although not a formal qualitative research study, the authors of this paper were able to draw insights from their firsthand experiences in planning and participating in the workshop; the meeting recording; detailed notes that captured salient discussion points from each session; and slides collected from each presenter. Further, all conference participants were encouraged to use the messaging feature of the virtual meeting platform as well as engage in verbal questions and comments throughout the entirety of the meeting. In turn, through this collective of information, we synthesized the main discussion topics and recommendations as well as gleaned cross-cutting ideas that repeatedly surfaced in presenter and participant commentaries during the 2-day virtual meeting. Together, the summaries of the workshop’s key areas of discussion suggest opportunities, challenges, and directions for further cultivating a robust cancer stigma research agenda.

Workshop key areas of discussion

As illustrated in Figure 1 and synthesized below, the main areas of discussion during the workshop included cancer stigma manifestations and types; drivers and contributors; impacts and consequences; measurement; interventions; and resilience. In addition, three cross-cutting lenses: 1) patient, family, provider, and community engagement; 2) global cancer disparities; and 3) the complexity of cancer stigma, including intersectional stigma (9,10), were recognized as vital to move cancer stigma research forward. Throughout the workshop, there was an emphasis on the importance of centering cancer survivors’ and family members’ voices and including both provider and community perspectives. There was wide consensus that addressing cancer stigma as a health disparity and equity issue is a vital step toward addressing global cancer inequalities and improving outcomes for all individuals affected by the disease (11). In addition, there was a recurring theme to identify and measure the cumulative and intersecting effects of multiple stigmas such as stigmatized identities (eg, LGBTQIA+, race/ethnicity), health risk behaviors (eg, tobacco use, alcohol use), and/or health conditions (eg, HIV, skin diseases) and to develop appropriate, sustainable interventions for stigma mitigation (9,10).

Figure 1.

The National Cancer Institute’s Global Cancer Stigma Research Workshop: Key Areas of Discussion.

It is important to note that, in summarizing several key areas of discussion, recommendations, and future directions from the workshop, these topics are described as distinct categories. However, in practice, they are inextricably interrelated. Understanding the ways these ideas intersect was central to the workshop’s dialogue and should continue to be considered in research and practice moving forward. Each category encompasses multilevel considerations of the occurrence and impact of cancer stigma at individual, social, and structural levels. Acknowledging the complex intersections of cancer stigma manifestation in dynamic contexts is key to designing valid methods for stigma measurement and context-appropriate stigma reduction interventions worldwide.

Cancer stigma manifestations and types

Understanding how cancer stigma manifests informs research, practice, and intervention efforts. It is critical to addressing the psychosocial and healthcare disparities experienced by individuals affected by cancer and is essential to improving their overall quality of life. Several forms of stigma were recognized during the workshop as was the utility of multilevel organizing models, frameworks, and perspectives (12,13), and the need for the inclusion of individuals with lived experience to provide a clearer understanding of the cancer stigma experience. Self or internalized stigma—the internalization of negative societal views, stereotypes, beliefs, and feelings associated with a stigmatized condition (eg, cancer), feature (eg, hair loss), or behavior (eg, smoking) (14)—was described among adults with HIV-associated Kaposi’s sarcoma in western Kenya who reported feelings of uselessness, hopelessness, and that life is no longer worth living after a cancer diagnosis (15); and in Chinese American breast cancer survivors who perceive themselves as undesirable people who bring shame and burden to their families (16). Public or social stigma—a “set of negative attitudes and beliefs that motivate individuals to fear, reject, avoid, and discriminate against people” (17) with a stigmatized illness, feature, or behavior—was raised in the context of human papillomavirus (HPV) and cervical cancer, where expressions of public blame toward women are frequent (18,19). Panelists presented examples of systemic or structural stigma—societal-level conditions (eg, social inequalities), cultural norms (eg, gender norms), and institutional policies that constrain wellbeing, opportunities, and resources for individuals with a stigmatized illness, feature, or behavior (20). For example, this stigma is observed in disparate research funding and policy attention around lung cancer in the U.S. (13) as well as in the ways social policies can negatively influence cancer survivors who identify as sexual or gender minorities. Finally, courtesy or affiliate stigma—negative social and psychological reactions to people associated with an individual with a stigmatized condition, behavior, or feature (21)—was described in Karnataka, India, where families of cervical and breast cancer patients request treatment teams to not park in front of their home to avoid negative social implications (eg, losing marriage prospects for their family members) (22).

Drivers and contributors

Worldwide, cancer stigma is driven by a complex interplay of contributing factors leading to negative attitudes, discrimination, and misconceptions surrounding cancer and those affected by it. Workshop participants highlighted several myths and misconceptions: fear of contagion (22); socio-cultural or religious beliefs (23) such as witchcraft, being cursed (22), or being punished for doing something bad in a current or past life; fatalism (23-25); and attribution of negative behaviors or personal choices (26). A range of fears, some caused by a lack of information or misinformation, were also identified as contributing to cancer stigma, including concerns about: death and disability (27); repercussions of the physical effects caused by cancer and its treatment (eg, hair loss, fertility issues, surgical scarring); and consequences of cancer on social status, including community exclusion or isolation, damage to the individual or family’s social standing or marriage prospects, and family abandonment (22). Also described as contributing to the degree of cancer stigma were concealability (ie, the extent to which one’s cancer can be hidden from others) (28,29); disruptiveness (ie, the extent to which cancer was seen as interrupting one’s life) (28,29); and perceived burden and treatability (ie, the services available, the visibility of successful treatment) (27).

Stigmatizing attitudes related to personal responsibility also emerged when discussing factors contributing to cancer stigma, particularly in the context of lung cancer in the U.S. and cervical cancer in several global settings. Lung cancer survivors, active in the patient advocacy community in the U.S., described being blamed for their lung cancer because of an assumed link to smoking (30,31). Similarly, several studies have demonstrated that cervical cancer stigma in many cultures is due, in part, to its link with sexual transmission of HPV and societal attitudes towards sexuality (32,33). The media’s role in contributing to unfavorable perceptions of cancer and the unintended consequences of public health campaigns (eg, anti-tobacco, vaccination) as contributing to the belief that one’s condition was preventable, and as a result, that the patient is to blame for their illness because of an assumed behavior (eg, cigarette smoking, sexual activity), were also highlighted (34,35). There was a call to the research and advocacy communities to consider the unintended effects of health communication campaigns, highlighting the role traditional and social media can play in destigmatizing cancer and promoting open and empathetic discussions about cancer prevention.

In addition to identifying specific drivers, there was the broader recognition that stigma is fundamentally a social phenomenon informed by culture, norms, and value systems that vary by time and place (36). It is essential to recognize the role of culture, context, and societal-level factors in both perpetuating and mitigating cancer stigma. Hence, cancer stigma research must include various perspectives and incorporate social and cultural context throughout the research process.

Impact and consequences

Cancer stigma can occur across the entirety of the cancer control continuum and negatively impact prevention, detection, diagnosis, treatment, and survivorship outcomes (37) as well as the psychosocial and physical health of cancer patients, survivors, caregivers, and families. Table 1 details several examples discussed in the workshop that help illustrate possible impacts of—and intervention points for—cancer stigma across the continuum and around the globe. Despite strides made by the cancer stigma research community in identifying these impacts and consequences, there remains a significant knowledge gap in the development of efficacious stigma reduction strategies. Workshop participants called for more research studies that incorporate mixed-methods study designs and survivor and family experiences in studies of cancer stigma consequences. In addition, a specific recommendation related to nesting cancer stigma measures and stigma reduction interventions in cancer care delivery trials (eg, therapeutic trials) was suggested by participants as this would allow researchers and healthcare providers to gain important insights on barriers and facilitators to patient recruitment and retention, improve treatment adherence by monitoring the mental and emotional well-being of patients, and document clinical outcomes.

Table 1.

Examples of Cancer Stigma Impact and Consequences Across the Cancer Control Continuum Observed around the Globe

Prevention	Screening	Diagnosis	Treatment	Survivorship
Beliefs that prevention efforts are futile may disincentivize individuals from adopting evidence-based cancer prevention and control behaviors (35)	Stigma is a feared outcome of a cancer diagnosis, resulting in delays in screening (22)	Social stigma may contribute to individuals hiding their cancer symptoms and forgoing a definitive diagnosis (eg, breast cancer) (52)	Fatalistic beliefs and provider discrimination may serve as barriers to treatment and unequal access to care (18,53)	Stigma may negatively affect quality of life and psychosocial functioning among cancer survivors (eg, prostate cancer, breast cancer) (54)
Self-stigma related to tobacco use may be associated with increases in stress and social isolation, decreases in self-efficacy, and resistance to cessation (35)	Due to embarrassment and perceptions of weight stigma in clinical settings, individuals with obesity may be less likely to adhere to cancer screenings (eg, gynecologic cancers) (55)	Fear of provider blame associated with smoking may result in delays in tobacco-associated cancer diagnoses (eg, head and neck cancer, lung cancer) (53)	Stigma may affect the quality of cancer care and lead to treatment abandonment among pediatric cancer patients in LMICsb (56)	Cancer stigma is associated with job loss and work discrimination among cancer survivors (57)
Stigmatizing beliefs, such as parents’ or community beliefs that HPVa vaccination promotes sexual behavior, may serve as a barrier to adolescents’ preventive vaccine uptake (58)	Beliefs about masculinity may be associated with decreased odds of cancer screening completion in men (eg, colorectal cancer) (59)	Negative community attitudes toward people with cancer may result in individuals concealing their diagnosis (27)	Physical changes accompanying cancer treatment may leave patients feeling isolated, embarrassed, and less willing to adhere to recommended therapies (54)	Negative community attitudes toward cancer survivors contribute to ongoing patient isolation and shame as well as caregiver burnout (27)

^aHPV = Human Papillomavirus.

^bLMICs = Low-and middle-income countries.

Measurement

Accurate measurement of cancer stigma is fundamental to conceptualizing and monitoring the complex and multifaceted issue of stigma manifestation and informing the development of stigma mitigation interventions. Despite its importance and a small collection of available cancer stigma scales (see the Cancer Stigma Scale [CASS] (38), the Cancer Stigma Index [CSI] (39), and the Cataldo Lung Cancer Stigma Scale [CLCSS] (40)), workshop participants described limitations in accurately measuring cancer stigma, the lack of measurement instruments and approaches tailored for specific contexts and populations (eg, pediatric cancer patients, LGBTQIA+ individuals), and many studies featuring small, non-representative samples, limiting cross-study comparisons. Most cancer stigma scales have been adapted from instruments developed for other conditions (eg, mental illness, HIV) and may lack specificity needed for distinct aspects of cancer stigma. Because of its site specificity, complexity, and context dependence, there are many considerations to developing effective cancer stigma measurement tools such as cultural variability, temporal and situational factors, and intersecting stigmas. One discussion throughout the workshop was whether cancer stigma should be measured broadly or whether site-specific cancer stigma scales would be preferable. For example, in the U.S., patients with lung cancer who face blame for their illness because of real or perceived tobacco use are likely to have a different stigma experience than patients with breast cancer who generally receive very little blame for their illness (41). The blame placed on people diagnosed with the same cancer may further differ by context. For example, in some cultures, lung cancer is considered the result of smoking cigarettes, whereas in other cultures, lung cancer may be due to exposure to wood burning or pollution, an attribution that has implications for the magnitude, measurement, and intervention around related stigma. Ultimately, there was agreement that both are needed as broad measure instruments of cancer stigma can provide a comprehensive overview of general attitudes and beliefs about cancer in societies, help identify common factors contributing to stigma, and be used in developing public health campaigns to reduce cancer stigma. Alternatively, site-specific cancer stigma scales can capture the nuances and unique challenges associated with individual settings and be useful for the development of tailored insights, interventions, and support.

Relatedly, there was an in-depth discussion and call to maintain the rigor of measurement while incorporating core cultural dynamics in diverse global settings. Many existing cancer stigma scales and studies have been developed and conducted in high-income countries, yet there are meaningful differences in the cancer stigma experience in low- and middle-income countries. Such differences inform what and how to measure cancer stigma in a given context. For instance, if illness-related stigma is connected to spiritual beliefs in a community or culture, it is important to recognize and include these dimensions in standard cancer stigma measurement scales. As this example illustrates, it is imperative that stigma measurement instruments are accurate, culturally sensitive, and consider the diversity of cultural beliefs and values that influence how cancer stigma manifests. It is also essential in their development and translation that cancer stigma scales do not inadvertently introduce or reinforce cultural or linguistic biases. For example, researchers should be cognizant that direct translations of select terms from one language to another may not fully reflect all relevant cultural nuances of the selected word(s) and/or that the translated term may convey greater stigma than its non-translated counterpart. With these considerations in mind, future efforts could inform a repository of adapted measures from which researchers select tools (eg, scales, frameworks) that have been used successfully and are most appropriate for use in their setting, facilitating research and intervention.

Interventions

Development of cancer stigma reduction interventions—strategies, programs, or activities designed to mitigate cancer stigma—was an important focus area for the workshop. Researchers noted long-term, community-led efforts targeting a range of outcomes (eg, knowledge, attitudes, behaviors, policies) are necessary as are interventions that are adaptable to settings for destigmatizing cancer. There was also broad consensus that it is essential to implement context-specific, sustainable stigma reduction interventions at multiple levels, within health systems and communities to improve cancer outcomes.

The intervention approach and point of interventions within the health systems were determined by the nature of stigma manifestation. For example, health education and literacy strategies were highlighted through a recent study of an educational intervention for addressing cervical cancer stigma, tailored to be environmentally and culturally appropriate for Nigerian men and women living in urban areas. Intended to reduce stigma and improve knowledge of HPV and cervical cancer among the urban Nigerian population, the authors found the intervention resulted in increases in knowledge but did not reduce cervical cancer stigma, suggesting low-cost, culturally tailored health interventions can increase knowledge and awareness however a more multifactorial approach may be needed to reduce stigma (42). A study testing an intervention that leveraged crowdsourced images and videos to reduce hepatitis B virus (HBV) stigma among men who have sex with men, at risk for hepatitis B in China (43), highlighted the use of communication and media campaigns to raise awareness and counter misinformation. This work found the crowdsourced intervention was associated with a statistically significant reduction in HBV stigma and more broadly supported an emphasis from the workshop that in considering anti-stigma campaigns, there should be a focus on ensuring messages are destigmatizing, connect with vulnerable populations, and are co-created with a range of voices (eg, patients, caregivers, researchers, campaign designers) to be inclusive and avoid unintentionally stigmatizing individuals or groups (43).

Participants also discussed the necessity of broader policy and structural changes such as investing in cancer screening and treatment services to improve cancer outcomes and normalizing access to cancer care delivery. Strategies targeting healthcare settings including training health workers in cancer awareness and knowledge; providing counseling and psychosocial support services for cancer survivors; and empathic communication training for providers, improving oncology care providers’ communication skills and patient-reported satisfaction with provider communication were recommended (44). There was a call to include diverse perspectives from patients, survivors, and others with lived experience while developing stigma reduction strategies. Individuals with lived experience might serve as advocates and educators, and survivors can help dispel myths and misconceptions associated with cancer, a process illustrated in Kenya where perceptions of cancer fatality are challenged by showing cancer survivors thriving and by empowering them to be change agents (45). Participants also emphasized the power of community engagement and participatory research in stigma reduction efforts. Involving communities as partners throughout the research and intervention process leverages local knowledge and skills, builds community capacity and empowerment, and fosters health equity (46).

Resilience

Resilience is the process and outcome of successfully adapting to difficult or challenging life experiences (47). Research on resilience aims to understand the processes that account for these positive outcomes (47), an important endeavor as an exclusive focus on the deficits and harms in stigma research risks exacerbating stigma and neglecting valuable resources, skills, and knowledge inherent to the individuals, patients, and communities with whom we partner (48). Existing literature demonstrates: resilience in cancer patients and survivors is associated with improved psychosocial, health, and treatment outcomes (47); differing resilience interventions have been tested among cancer patients, resulting in positive effects (49); and resilience interventions can benefit cancer patients’ quality of life, posttraumatic growth, anxiety, and depressive symptoms (49,50). There is further evidence that resilience is negatively correlated with cancer stigma in childhood cancer survivors (51), and that resilience can play a significant role in coping with cancer stigma both by patients and caregivers (52). First person accounts during the workshop, including descriptions of how breast cancer patients who identified as survivor advocates were more likely to adhere to treatment or case studies detailing how survivors who conquered a physical challenge and were given psychosocial support to deal with self-limiting beliefs went on to become advocates, illustrated how resilience can function in practice and how empowerment can benefit survivors. Workshop participants highlighted the importance of group belonging, the power in collective resistance, and the strength of challenging stigma in partnership with others as ways to leverage the strengths of the individuals and groups that are stigmatized. There was also the recognition that many of these concepts are not well studied and that additional work elucidating the interplay of cancer stigma, resilience, and treatment response in cancer patients and survivors offers the opportunity to provide a more holistic understanding of stigma and to consider whether there are protective factors at the individual, social, and structural levels that can be leveraged in prevention and intervention efforts.

Future directions in studying and mitigating cancer stigma

NCI’s Global Cancer Stigma Research Workshop allowed for the identification of key areas, gaps, and opportunities in global cancer stigma research. When considered together, the workshop’s main topics reinforce an important conclusion: cancer stigma is a complicated and pervasive issue with far-reaching consequences for individuals at-risk of and/or diagnosed with cancer, their families, and their communities. As articulated throughout the virtual workshop and described in this report, studying cancer stigma in a global context is a multifaceted and complex process. Cancer stigma is intricately linked with other health and social challenges, persists over time, and varies across cultures, contributing to the endurance of cancer inequities worldwide. In addition, cancer stigma poses measurement and intervention challenges, requiring innovation across and within scientific and clinical disciplines. A comprehensive understanding of cancer stigma research must expand the scope of existing research methodology, requiring an inclusive and adaptive approach of community engagement; systems level thinking and application to promote global health equity; and intentional collaboration among diverse stakeholders. By considering cross-cutting topics and major research areas such as those identified during the workshop, interventions can be more effective in reducing the stigma associated with cancer and reducing cancer disparities worldwide.

Importantly, this workshop was one component of a larger strategic agenda for NCI to collaborate with and hear directly from the research and practice communities on how to best advance the field of global cancer stigma research. The results of this workshop have several implications. Moving forward, NCI will continue to engage researchers, cancer survivors and their families, healthcare providers, community members and organizations, non-profit organizations, government agencies, and other key collaborators for input and guidance on accelerating research and practice in this area. Relatedly, although we recognize this commentary synthesizes major ideas discussed in a large, international workshop, a valuable next step would be to undertake a formal study to establish consensus around key themes and research priorities as identified by expert opinions and those with lived experiences (eg, the Delphi method, key informant interviews, focus groups). Lastly, continued collaboration with the global cancer stigma community, coupled with the insights gained from workshops, will inform priority setting and shape NCI’s research agenda, potentially fostering an effective and equitable global approach to reducing cancer burden worldwide.

Data availability

There are no new data associated with this paper.

Author contributions

Kathryn Heley, PhD, MPH (Conceptualization; Formal analysis; Project administration; Visualization; Writing—original draft; Writing—review & editing), Robin C. Vanderpool, DrPH (Conceptualization; Project administration; Writing—original draft; Writing—review & editing), and Vidya Vedham, PhD (Conceptualization; Project administration; Writing—original draft; Writing—review & editing).

Monograph sponsorship

This article appears as part of the monograph “Global Cancer Stigma: Research, Practice, and Priorities.” This issue was funded by the National Cancer Institute, National Institutes of Health, Department of Health and Human Services, Bethesda, MD. The opinions expressed by the authors are their own, and this material should not be interpreted as representing the official viewpoint of the U.S. Department of Health and Human Services, the National Institutes of Health, or the National Cancer Institute.

Conflicts of interest

The authors declare no conflicts of interest.