NCPD Article

Stigma in Clinical Oncology

stigma, discrimination, cancer, literature review, person-centered care
CJON 2024, 28(1), 43-51. DOI: 10.1188/24.CJON.43-51

Background: Health-related stigma, including cancer-related stigma, can lead to discrimination that contributes to health inequities and poor health-related outcomes.

Objectives: This article provides a scholarly foundation to acknowledge and address health-related stigma in clinical oncology care.

Methods: This comprehensive clinical literature review is based on peer-reviewed articles identified through targeted searches in CINAHL®, PubMed®, and Google Scholar™ databases.

Findings: This review provides an updated scholarly foundation about stigma in clinical oncology practice. The review highlights stigma in clinical oncology research, identifies a framework for examining multilevel health-related stigma and discrimination, examines stigma measurement instruments, and reviews stigma reduction interventions.

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    Stigma is a powerful, multifaceted social phenomenon. Health-related stigma can be associated with specific medical conditions, behaviors, and characteristics considered undesirable, such as HIV, substance use, obesity, and mental illness, which are then linked to negative stereotypes (Akin-Odanye & Husman, 2021; Phelan et al., 2023). Stereotyping and labeling can lead to systemic discrimination and inequity for individuals affected by health factors, contributing to adverse events and, ultimately, poor outcomes (Phelan et al., 2023). Across the patient’s cancer continuum, cancer-related stigma can be a significant barrier to seeking and receiving clinical care. People experiencing or anticipating cancer-related stigma are more likely to hide their diagnosis and delay care in anticipation of negative judgments about their physical appearance, poor prognosis, or blame for their disease (Akin-Odanye & Husman, 2021). Stigma may facilitate distress and isolation, and may adversely affect cancer treatment, mental health, and social functioning (Huang et al., 2021).

    Background 

    Sociologist Erving Goffman (1963) first described stigma as an attribute that profoundly discredits an individual or a group from being whole, causing them to be viewed as less desirable, harmful, or weak. This perception leads individuals who are stigmatized to feel as though they are flawed or handicapped, and that they have failed and are considered different from others (Goffman, 1963). Stigmatization occurs on a spectrum, going beyond characteristics and emphasizing the relationship between normal and contaminated identities. Goffman (1963) described three types of stigmas that are aimed toward an individual’s (a) physical body, (b) character, or (c) tribe (referring to race, nation, or religion).

    Goffman’s (1963) work inspired additional research, improvements, and applications in countless situations. MacDonald (2003) used Goffman’s (1963) stigma framework to conceptualize the “difficult” patient through a critical review of nursing research. Labeling a patient as difficult is really about the social interaction (i.e., relationship) between nurses and patients. Of note, no nursing theory has supported these conceptualizations. The article concluded with implications for nursing research, such as considering qualitative methods to better understand attitudes and perspectives (MacDonald, 2003). In clinical practice, nurses could consider alternative explanations for behavior.

    Shortcomings in Goffman’s (1963) conveyance of stigma, primarily related to variability and vagueness, led to the reconceptualization of stigma. Conceptualizing Stigma (Link & Phelan, 2001) expanded the definition from a different individual factor to the convergence of multiple interrelated differences, including cultural beliefs that link the differences to undesirable characteristics and stereotype formation (Link & Phelan, 2001). Human differences, such as race, gender identity, or sexual orientation, are simply categorized. However, linking these labels with stereotypes contributes to status loss and results in individual and structural discrimination (Link & Phelan, 2001). An example of labeling includes the term cancer patient, which indicates that the person is the label (cancer) and separates “us” from “them.” Stigmatization involves power differences, with negative labels resulting in status loss and, ultimately, individual and systemic discrimination, which can profoundly affect the available opportunities and advantages (Link & Phelan, 2001). Goffman’s concept of stigma is from 1963; therefore, the language and beliefs from that concept require an update accounting for diversity, equity, and inclusion, moving away from the idea of normalcy, and recognizing the heterogeneity related to health-related stigma (Weiss et al., 2006). Person-first language is now preferred; using phrases like “a patient who has cancer” or “a patient with cancer” prioritizes the person before their medical condition (cancer) and recognizes that the disease is not the defining characteristic (Link & Phelan, 2001; Volkow et al., 2021).

    The concept of health-related stigma was introduced by Weiss et al. (2006), recognizing the social exclusion of individuals and populations associated with specific health conditions. Health-related stigma contributes to the burden of illness in several ways, including delaying or terminating care for treatable conditions. Stigma may be enacted, anticipated, or internalized, resulting in an adverse social judgment identified by “exclusion, rejection, blame or devaluation” (Weiss et al., 2006, p. 290). Family members or healthcare workers may experience discrimination through associated stigma as well. Perceived stigma consists of an individual’s perceptions about how a person or group is treated because of a health condition (National Institute of Mental Health, n.d.). Therefore, healthcare providers may have stigmatizing attitudes and behaviors, adversely affecting health outcomes (Weiss et al., 2006). See Table 1 for definitions associated with stigma.

    “TABLE1”

    In an editorial published by the National Comprehensive Cancer Network, cancer-related stigma was recognized as the elephant in the room and a major barrier to detecting and improving psychosocial care (Holland et al., 2010). The uncertainty of cancer, accompanied by personal attitudes, cultural beliefs, myths, and misbeliefs, increases stigma surrounding a cancer diagnosis. In addition, certain cancers that are linked to perceived health behaviors, lifestyle risk factors, and particular side effects are associated with increased stigma (Holland et al., 2010). For example, lung cancer is closely linked to cigarette smoking, and stigma toward lung cancer is a barrier to patients seeking medical help despite symptoms they may be experiencing (Carter-Harris et al., 2014). Therefore, stigma and its effects on health care are complex and multidimensional, and contribute to disparities and negative health consequences.

    Purpose

    The purpose of the comprehensive clinical literature review is to provide a scholarly foundation to acknowledge and address health-related stigma in clinical oncology care delivery.

    Methods

    This review is based on peer-reviewed articles identified through targeted searches in CINAHL®, PubMed®, and Google Scholar™ databases using different combinations of search terms that included “nurse,” “stigma,” and “cancer,” and similar words, such as “nurses,” “nursing,” “stigmatizing,” “discrimination,” and “oncology.” Articles in this review were published between 2019 and 2023 (see Table 2). To synthesize content, articles were assessed for study aims, methods, major findings, opportunities for nursing research, clinical oncology practice applications, and strategies to improve the delivery of clinical oncology nursing care. The review includes a critical appraisal of recent systematic reviews on oncology nursing and stigma. In addition, this article incorporates more current themes from the stigma-related literature and identifies nursing opportunities to improve clinical care for people living with cancer.

    “TABLE2”

    Findings

    Themes from this review include stigma in clinical oncology research, a framework for health-related stigma and discrimination, stigma measurement tools, and interventions to reduce stigma.

    Stigma in Clinical Oncology Care Research

    To identify correlates of cancer stigma, a meta-analysis of stigma focused on adults diagnosed with cancer and quantitatively measured the relationship between stigma and at least one other variable, such as a demographic characteristic (Huang et al., 2021). Thirty-one articles reviewed in the meta-analysis were published between 2009 and 2020. The meta-analysis included 15 studies from the United States. High levels of cancer stigma were associated with demographic characteristics, including male gender, lower income, and disease-related variables, such as poor quality of life, severe symptoms, poorer self-efficacy, and more self-blame (Huang et al., 2021). In addition, consistent with previous research, increased depression and anxiety were associated with higher levels of cancer stigma. Based on the meta-analysis, the authors recommended designing interventions to target symptoms and psychosocial factors, including patient–provider communication, which may decrease cancer stigma and distress and improve quality of life (Huang et al., 2021).

    Another systematic literature review explored studies on cancer-related stigma between 2010 and 2020, focusing on cancer screening, health outcomes, and stigma interventions (Akin-Odanye & Husman, 2021). A total of 54 articles met the inclusion criteria: 31 quantitative, 19 qualitative, 2 mixed-methods, and 2 scoping reviews. For Akin-Odanye and Husman’s (2021) systematic review, most studies were conducted in the United States (n = 18). The prevalence of high cancer stigma among people with cancer ranged from 26.1% to 35.5%, with the highest stigmas resulting in shame and blame among people with lung and cervical cancers because of the diseases’ connections to smoking and sexually transmitted infections (Akin-Odanye & Husman, 2021). Results from these studies suggest that cancer stigmas negatively affected communication between clinicians, patients, and support systems. To reduce stigma in cancer care, the authors of the review recommended eliminating communication barriers and improving health professionals’ communication and interactions through ongoing training (Akin-Odanye & Husman, 2021).

    Based on the results from the systematic review, most studies focused on single cancer types (e.g., lung cancer) or specific situations or settings (e.g., the workplace) (Akin-Odanye & Husman, 2021). However, stigmatized features or characteristics rarely occur in isolation, and intersectional stigma is an emerging concept, allowing researchers to better understand complex relationships (Turan et al., 2019). Intersectionality, first introduced by Crenshaw (1991), is not uncommon even though it is commonly poorly understood (Turan et al., 2019). The concept of intersectionality occurs when multiple identities of individuals intersect and influence health behaviors and physical and mental well-being. Therefore, race, gender, disease, and social determinants of health may all be associated with inequities, leading to worse health behaviors and outcomes (Turan et al., 2019). Despite this, positive characteristics of shared identity can mitigate stigma (Turan et al., 2019). According to these researchers, applying intersectionality requires appropriate methodologic techniques that include moderation, multilevel modeling, and structural equation modeling, and ideally uses a mixed-methods approach (Turan et al., 2019). A mixed-methods approach combines structured questions (quantitative) followed by open-ended inquiries (qualitative) (e.g., asking about a person’s cancer diagnosis and then saying, “Tell me more about your experience”). According to Jaiswal and Mumba (2022), it is challenging to consider intersectional stigma related to different health conditions. However, applying intersectionality allows for designing tailored interventions and emphasizing positive characteristics while reviewing potential barriers (Jaiswal & Mumba, 2022). An intersectional approach can be integrated into future research advancements to improve the health of marginalized populations (Jaiswal & Mumba, 2022).

    The Health Stigma and Discrimination Framework 

    Health-related stigma directly affects help-seeking behaviors and can lead to discrimination, devastating inequities, and worsened outcomes (Birbeck et al., 2019a; Stangl et al., 2019). During the past 25 years, the concept of health-related stigma has evolved, recognizing its multifactorial, complex, and intersectional nature (Birbeck et al., 2019a; Heijnders & Van Der Meij, 2006; Link & Phelan, 2001; van Brakel, 2006; Weiss, 2008). People may experience stigma along the entire cancer care continuum, from prevention and screening to survivorship or end of life. In addition, different drivers and facilitators, as well as cultural contexts, influence the stigma-related experiences and practices a person with cancer may encounter (Stangl et al., 2019). At a workshop in June 2017 that included 60 international researchers, the National Institutes of Health’s Center for Global Health Studies (2021) sponsored the Science of Stigma Reduction: New Directions for Research to Improve Health workshop. The workshop identified critical gaps and priorities, and discussed cross-cutting stigma reduction research (Center for Global Health Studies, 2021). As a result of the workshop, Birbeck et al. (2019b) published a collection on stigma research and global health consisting of nine stand-alone articles supplying complementary and comprehensive views. 

    Stigma has long been recognized as a multilevel phenomenon. The multilevel stigmatization process includes individual and interpersonal levels, as well as structural levels comprising organizational and community positions. However, addressing stigma on multiple levels is more complex. Stigma reduction efforts need to be more synergistic and farther reaching (Rao et al., 2019). A systematic review of multilevel stigma interventions conducted by Rao et al. (2019) identified 24 articles. However, the review identified that most research has focused on the individual and interpersonal levels. Rao et al. (2019) provided recommendations for future research, including incorporating organizational, community, and structural levels and expanding the range of health conditions.

    Based on an intersectional perspective, another health-related stigma framework can be developed to examine the multiple stigmatized identities’ effects on health behaviors. In addition, multiple stigmatizing identities with an individual or group, combined with differing levels, further complicates health-related stigma research. To address and understand significant knowledge gaps and to develop tailored health interventions, future health research requires qualitative, quantitative, and mixed-methods approaches (Turan et al., 2019). Exploring multiple stigmatized factors enhances the healthcare provider’s ability to respond and design multilevel interventions. By deconstructing disease- or condition-specific silos, providers can recognize and share commonalities across conditions (Birbeck et al., 2019a). A multilevel socioecological model, the Health Stigma and Discrimination Framework (HSDF) acknowledges intersecting identities, shifting the focus from stigma as a thing to stigma as a complex construct involving broader “social, cultural, political, and economic” forces (Stangl et al., 2019, p. 4). This proposed framework is specific to health-related stigma, appreciates the co-occurrence of intersecting stigmas, and incorporates the full spectrum of stigmatizing conditions (Stangl et al., 2019) (see Figure 1).

    “FIGURE1”

    As components of the HSDF, factors that drive health-related stigma are fundamentally negative, often resulting from fear, social judgment, lack of awareness, stereotypes, and blame (Stangl et al., 2019). On the contrary, according to the framework’s authors, facilitators may be positive or negative, leading to variations in outcomes for the affected individuals or population. Examples of facilitators include cultural norms, social and gender norms, and equality. Stigma marking or application occurs when a stigma is applied to a person or groups of people, based on perceived differences. Intersectionality entails multiple stigmatized experiences toward the health condition–related stigma and other coinciding factors (Stangl et al., 2019). Manifestations of stigma can include experiences and practices and a bidirectional relationship with drivers and facilitators. Experienced stigma and discrimination can be internalized, perceived, or anticipated secondary to stigma. Stigma practices involve stereotypes and prejudices, leading to behaviors based on stigma (e.g., verbal abuse, denying services or housing) and discriminatory attitudes (Stangl et al., 2019). To date, there are no published studies about cancer-related stigma that used the HSDF to guide research. However, Table 3 illustrates the application of HSDF to a clinical oncology case study.

    “TABLE3”

    Stigma Measurement

    The two systematic reviews of stigma in clinical oncology identified more than nine different measures of stigma (Akin-Odanye & Husman, 2021; Huang et al., 2021). In a comprehensive review of 93 articles about stigma measurement, 102 unique stigma instruments were identified for the assessment of stigma in children and adolescents from low- and middle-income countries (Gavan et al., 2022). From the presented studies, Gavan et al. (2022) found that 12 tools were used more than once, and four were used for more than one stigmatized condition. Of these tools, the Social Distance Scale (Bogardus, 1926) was used most often (n = 6), followed by the Everyday Discrimination Scale (Williams et al., 1997) (n = 3) (Gavan et al., 2022). However, in systematic reviews of stigma, studies of individuals diagnosed with cancer did not use these measurement scales. Table 4 lists selected stigma measurement instruments.

    “TABLE4”

    Stigma Reduction Interventions

    A literature review by Nyblade et al. (2019) covering articles published between 2013 and 2018, inclusive of seven health conditions including cancer, synthesized stigma reduction intervention research. The review identified 728 abstracts and included 47 manuscripts (42 distinct interventions). However, no interventions presented in the articles were targeted toward the care of patients with cancer (Nyblade et al., 2019). Studies addressed interventions for two medical conditions, including mental illness and substance use. In addition, 20 of the intervention articles targeted healthcare providers, 24 targeted healthcare students, and 4 also included patients. One study included all levels of healthcare workers (medical and nonmedical) (Nyblade et al., 2019). Interventions to reduce stigma included education, skills-building, participatory learning, exposure to stigmatized groups, structural or policy change, and empowerment of the stigmatized person. Most interventions were based on multiple approaches to reduce stigma.

    Researchers have recognized a lack of interventional studies that address cancer-related stigma, including stigma in healthcare settings (Akin-Odanye & Husman, 2021; Nyblade et al., 2019). To address this gap, researchers recommended addressing stigma at the individual and structural levels, and encouraged joint participation among stigmatized individuals and health professionals. Technological advances, such as smartphones and tablets, increase the efficiency of self-learning modules (Nyblade et al., 2019). In an online interventional study by Wearn and Shepherd (2020), 141 participants were randomized to three groups: emotive media (shame and stigma), factual media, or control. Study findings suggest that there is increased public stigma toward people who have not been screened for cervical cancer, which may positively predict patients’ cervical screening intention. Carefully considering the type of narrative included in mass media news articles may prevent the unintentional increase in stigma toward unscreened people who develop cervical cancer. Although this study’s results suggest cervical cancer screening intention can predict behavior, this study’s results confirm a well-known intention–behavior gap (Wearn & Shepherd, 2020).

    Implications for Nursing

    A cancer diagnosis is often associated with negative outcomes, including death. In addition, fear of judgment may lead to concealment, delay of care, and alteration of one’s identity (Akin-Odanye & Husman, 2021). As members of interprofessional care teams, oncology nurses can address intersectional, multilevel stigmas experienced by patients in their care. Mitigating stigma in nursing promotes health equity. Therefore, by supporting a foundation of interprofessional expertise, nurses can lead interprofessional scientific research teams to understand and address stigma and advance health equity.

    To decrease cancer-related stigma, nurses can improve their communication skills (Akin-Odanye & Husman, 2021; Huang et al., 2021). As frontline caregivers, nurses often act as the direct link between patients with cancer, their support systems, and the care team. Nurses can facilitate communication among team members and can effectively translate complex information to patients and families (Young et al., 2020). To achieve the best outcomes for marginalized populations, providers can implement interprofessional collaboration and apply excellent communication and listening skills, which prioritizes therapeutic and trusting relationships.

    Patient-centered care has been a care model for decades. Patient-centered care encompasses holistic treatment of the unique individual, focusing on the relationship between the patient and the healthcare provider and allowing patients to be active and engaged in their care (Eklund et al., 2019). Patient-centeredness is an important global issue, and in 2007, the World Health Organization shifted to a person-centered approach. Person-centered health care starts before the person receiving care becomes a patient, and involves individuals, families, support systems, and communities. Nurses deliver cancer care along a continuum, and a person-centered approach enables and empowers people, allowing patients to play an active role in their health and decision-making (Young et al., 2020). In addition, promoting a person- and family-centered approach to care empowers patients to self-advocate and communicate their concerns and priorities.

    Nurses are responsible for advocating for the safety and well-being of all patients, including ensuring they receive high-level, evidence-based cancer care, regardless of the nurse’s personal stigmas or beliefs. Measuring intersectional and multilevel stigmatizing identities, which share mechanisms of the stigmatization process, requires a more generic approach. Deconstructing silos allows commonalities to be shown across different health conditions and cultures. To reduce health inequities, providers can implement a more egalitarian process in support of stigma-limiting interventions. For example, similar to master protocols or basket trials, which evaluate therapies associated with multiple diseases and common molecular alterations, providers can implement interventions targeting multiple sources of stigma.

    “IMPLICATIONS”

    Conclusion

    Patients may experience cancer-related stigma in addition to other stigmas from the layering of multiple characteristics on many different levels. To provide a scholarly foundation related to stigma in clinical care, this comprehensive clinical literature review acknowledges and addresses health-related stigma related to clinical oncology care. For clinical oncology nurses in practice, this review highlights stigma in clinical oncology research, identifies a framework to examine multilevel health-related stigma and discrimination, identifies stigma measurement instruments, and reviews stigma reduction interventions (Rao et al., 2019; Turan et al., 2019).

    The author gratefully acknowledges Ellen Carr, PhD, RN, AOCN®, for her mentorship.

    About the Author

    Gretchen A. McNally, PhD, ANP-BC, AOCNP®, is a nurse practitioner in the Arthur G. James Cancer Hospital and Richard J. Solove Research Institute at the Ohio State University in Columbus. The author takes full responsibility for this content and did not receive honoraria or disclose any relevant financial relationships. The article has been reviewed by independent peer reviewers to ensure it is objective and free from bias. McNally can be reached at gretchen.mcnally@osumc.edu, with copy to CJONEditor@ons.org. (Submitted August 2023. Accepted November 3, 2023.)

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