Time to Rethink and Reverse Stigma

Research surrounding stigma has been ongoing since Erving Goffman’s landmark work, Stigma: Notes on the Management of Spoiled Identity (Touchstone, 1986). Researchers have worked with health advocates to better understand stigma; as a result, some research studies have started to produce meaningful insights about what stigma is and how it can be reduced. Despite the growth in social science research on stigma, however, the term “stigma” as used in public health still is not defined clearly.

Researchers in different disciplines approach the concept of stigma from different perspectives, which construct different definitions of stigma. The absence of a set definition of stigma precludes meaningful appraisal and comparisons of study findings and limits the ability to design effective programs and interventions. For stigma research to move forward, stigma researchers need to continue conceptual clarification and pursue innovative directions to better understand the landscape of stigma. The field of stigma studies lacks a comprehensive framework for understanding the full range of consequences that occur when individuals experience stigma. Researchers have constructed exceptional models and reviews of specific kinds of experiences, but no one has incorporated all of the observed consequences within an overarching framework. Therefore, we must prioritize the development of a model that clearly explains what stigma is in public health and successfully reduces it. In this article, I analyze the existing literature on how stigma is conceptualized in public health, the methods for measuring stigma, the data on the association of stigma and efficacy of prevention programs, and interventions for reducing stigma.

Current Conceptualization of Stigma in Public Health

Definition of Stigma in Public Health

Although stigma has been considered a major impediment to effective interventions to address various public health problems, such as the HIV epidemic, there has been little effort among policymakers to define and address the phenomenon. A clearer definition of stigma is needed to enable program implementers and policymakers to acknowledge the necessity of constructing specific stigma reduction interventions and understand the prevailing effect stigma has on the success of prevention programs in various public health conditions, such as mental illness and obesity. Furthermore, research relevant to specific stigmatized conditions generally has been categorized in separation domains. For instance, studies focusing on the consequences of HIV/AIDS stigma, mental illness stigma, obesity stigma, and sexual orientation stigma are on separate tracks. The field of population health would benefit from a synthesis of these disparate literatures and the development of a theoretical framework that provides insights into the processes that generate health inequalities among members of stigmatized groups.(1) Link and Phelan defined stigma as “the co-occurrence of its components—labeling, stereotyping, separation, status loss, and discrimination.”(2) This definition helps to understand crucial issues in stigma research and may serve as a good starting point for developing a comprehensive framework for stigma in public health. Their conceptualization is now widely accepted in the stigma literature. In this current work, the term stigma is applied when elements of labeling, stereotyping, separation, status loss, and discrimination simultaneously occur in a power situation.

Consequences of Stigma in Public Health

The evidence in the literature supports the theory that stigma exacerbates circumstances that ultimately lead to detrimental health outcomes. Many stigmatized circumstances, such as having a history of mental illness, lead to resource-reducing discrimination such as substandard employment, reduced quality of life, and inadequate healthcare. Several studies have indicated that stigma may cause social isolation. Fears of rejection and negative evaluation lead individuals with stigmatized conditions to avoid entering close relationships for fear of others discovering their stigmatized status. Social isolation increases risk for poor health outcomes, and the stigma–health relationship is significantly attenuated after adjustment for social isolation.(1) Stigma also interferes with many psychological processes. The most destructive outcome of this interference is the internalization of negative perceptions of one’s own status. Over time, the effort required to cope with stigma diminishes individuals’ psychological resources and, therefore, their ability to regulate their emotions adaptively, which can have negative consequences for both mental and physical health. Emerging evidence shows that the experience of stigma can also lead to maladaptive coping behaviors—including smoking and drinking—that increase risk for adverse health outcomes.(3)

Stigma often is cited as a significant barrier to accessing prevention and treatment services.

In addition to its detrimental influence on health, stigma often is cited as a significant barrier to accessing prevention and treatment services. For instance, both self-report and experimental research demonstrate negative stereotypes and attitudes toward obese patients on the part of a range of healthcare providers and fitness professionals, including views that obese patients are lazy, lacking in self-discipline, dishonest, unintelligent, annoying, and noncompliant with treatment. Research also indicates that providers often spend less time in appointments with and provide less health education to patients with stigmatized illnesses compared with patients who do not have such conditions.(4) In response, the patients with stigmatized illnesses report experiences of bias and express that they feel disrespected by providers. These findings suggest substandard healthcare experiences for individuals with stigmatized conditions when quality healthcare is especially important, because these patients are at a higher risk for other comorbid conditions. Finally, the lack of sensitivity expressed by health professionals responsible for treating these patients is alarming and must be rectified.

Stigma in Public Health

Stigma is a known enemy in public health. Throughout history, stigma has imposed suffering on groups vulnerable to disease and obstructed efforts to thwart the progression of those diseases. For example, in 19th-century America, Irish immigrants were commonly believed to be responsible for epidemic diseases because they were “filthy and unmindful of public hygiene.” As large numbers of Irish-born immigrants died of cholera and other diseases, many viewed their deaths as acts of retribution upon the “sinful and spiritually unworthy.”(5) In many historical examples of stigma, the perception of such conditions included moral judgments regarding the circumstances of how the condition was contracted, in addition to censure toward the individuals thought to be most affected by such a condition. Such judgments can contribute significantly to the social risk and experienced stigma associated with an illness and, subsequently, influence the behaviors of people at risk. Additionally, interventions that aim to reduce stigma probably will be affected negatively by the fact that these conditions often are perceived and interpreted as moral deficits that the affected persons could easily correct by changing their behavior. Experimental research by Pettit(4) showed that providing individuals with information emphasizing personal responsibility for obesity increases negative stereotypes toward obese persons, whereas information highlighting the complex etiology of obesity improves attitudes and reduces stereotypes. Unfortunately, stigma now has become a socially acceptable form of prejudice. In 2000, a national Internet survey of more than 5600 American adults revealed similar findings. Nearly one in five respondents agreed with the statement “people who got AIDS through sex or drug use have gotten what they deserve.”(6) Although the literature consistently has framed stigma as a significant social problem, this form of bias rarely has been challenged, and its public health implications often have been neglected. Instead, prevailing societal attributions blame persons living with stigmatizing conditions for their problems, with common perceptions that this stigmatization is justifiable because they are personally responsible for their conditions, and that stigma might even serve as a useful tool to motivate them to adopt healthier lifestyle behaviors.(4)

The idea that stigma may serve as a beneficial tool of social control to improve the health of individuals with stigmatizing conditions has been often debated. However, the available evidence refutes this presumption. Instead, research indicates that stigmatization reinforces unhealthy lifestyle behaviors that contribute to worsening individuals’ conditions. Therefore, the predominant societal messages that reinforce blaming persons living with stigmatized conditions for those conditions must be replaced with messages that these conditions often are chronic conditions with complex etiologies, and that they are lifelong conditions for most individuals.

The power differentials inherent in stigma create substantial obstacles that make it especially challenging to reduce these health disparities. The root cause of such inequality therefore requires multiple fields of inquiry to expose it, and a concerted effort also is required on the part of funding agencies, including the National Institutes of Health, to provide the necessary resources to ensure that such research is conducted.(1) The notion of viewing stigmatized conditions through the lens of social justice will also be effective, because framing these conditions as social justice issues reminds people that individuals with these conditions are just people.

Methods for Measuring Stigma

Many instruments for assessing the intensity and qualities of stigma have been developed and presented in different stigma studies. These instruments, however, are limited at the individual level. The lack of a clear way to measure structural stigma has been one of the main reasons for the dearth of stigma research. Instead, researchers have focused on assessing structural aspects of stigma at the individual level of analysis. For instance, a number of attempts have been made to measure attitudes toward mental illness and stigma, most of which have focused on attitudes towards mental illness held by people in the community.(7) This is problematic, however, because individual-based measures cannot capture certain dimensions of stigma that exist at the structural level. Additionally, the variability in manifestations of stigma has made it difficult to measure the extent of stigma, assess the impact of stigma on the effectiveness of prevention programs, and devise interventions to reduce stigma.(8) These scales must evaluate stigma reduction interventions to identify which approaches are most likely to be successful and how they should be implemented in different contexts and varying circumstances. Therefore, a comprehensive framework must measure stigma across different domains at both individual and structural levels.

Structural stigma may be measured by analyzing how the rights of individuals with stigmatized conditions are not protected. The persistence of interpersonal discrimination, despite protections guaranteed by the Americans with Disabilities Act and the Fair Housing Act, demonstrates how stigma continues to occur when structural interventions with the stated intention of diminishing stigma are inadequately designed and implemented. An awareness of the existence of covert forms of structural stigma is useful for informing a research strategy that identifies manifestations of structural stigma that are not easily recognizable and understanding how structural stigma can be sustained even when structural interventions are purported to protect stigmatized groups.(1)

The Association of Stigma and Efficacy of Prevention Programs

Stigma reduction strategies will be neither pragmatic nor effective without measures of structural stigma and identifications of levers to affect change. Stigma reduction strategies have been limited in which many interventions are individual-based to assist labeled individuals to cope with perceived stigma. However, any approach must work at multiple levels to address issues on both individual and structural levels. Without fundamental changes, interventions targeting only one domain at a time will fail, because their efficacy will be reduced by other factors that are unchanged by such a narrow intervention.

Knowing about different types of stigma can be helpful when designing stigma reduction interventions.

Fortunately, recent investigation in the sociologic domains has expanded the previous understanding of stigma to incorporate the structural components that contribute to stereotyping. Constructing stigma in this regard emphasizes the imperative of formulating an environment to move from individual-based conceptions to identify an undesirable aspect, categorize stereotypes, and, most importantly, act on the stereotype by criminalizing the stigmatized individuals. Parker and Aggleton further argue that structural power is not only needed to enable stigmatization, but also that stigmatization plays a key role in producing and reproducing relations of power and control. Stigmatization, they argue, is intricately linked with the workings of social inequality by its capacity to cause some groups to be devalued and other groups to feel that they are superior. In acknowledging that stigma functions at the intersection of culture, power, and difference, Parker and Aggleton argue that stigmatization is central to the constitution of the prevailing social order.(8)

Knowing about different types of stigma can be helpful when designing stigma reduction interventions. There are essentially three dimensions of stigma: self stigma; public stigma; and structural stigma. Self stigma occurs when people with stigmatized conditions internalize stereotypes, apply those attitudes to themselves, and suffer diminished self-esteem and lessened self-efficacy. One outcome of self stigma is what we call the “why try? effect”—when individuals believe stereotypes about themselves suggesting they are unable to meet the demands of a particular task and, as a result, decide not to even try. In contrast, public stigma occurs when large segments of the general public agree with the negative stereotypes; therefore, it is sometimes referred to as community or cultural stigma. Public stigma is operationalized through the behaviors of individuals and groups of all kinds in society. Public stigma reflects the contextual climate of prejudice and leads to varied types of discrimination, including loss of opportunity, taking away self-determination, and segregation.(9) Structural stigma is the societal-level conditions, cultural norms, and institutional practices that constrain the opportunities, resources, and wellbeing for stigmatized individuals. Anti-stigma programs for public stigma are different from those for self-stigma and structural stigma.

Careful approaches are needed to address all kinds of stigma meaningfully. To successfully implement programs to reduce stigma, the most important question to address first is “Who should be the target of anti-stigma programs?” Many stigma studies emphasize the need to address different types of stigma and the significance of combining individual and structural interventions to reduce stigma maximally in public health. Table 1 illustrates three categories of stigma and the repercussions from each, as well as potential targets for change and interventions that have been used.

Comprehensive reviews of evidence have described the impact of anti-stigma programs. For instance, Hatzenbuehler provided an excellent review of published stigma measures.(1) Absent from their publication, however, is any consideration of how to integrate these and other measures of stigma change programs in public health. Unfortunately, previous reviews suggest that the quality of measurement and design of studies assessing anti-stigma programs have been wanting.(9) Robust measures that can assess the impact of anti-stigma programs must be developed.

Interventions for Reducing Stigma

Researchers have theorized extensively on how stigma at structural levels has detrimental consequences for health. Hatzenbuehler and colleagues define structural stigma as the “societal-level conditions, cultural norms, and institutional practices that constrain the opportunities, resources, and wellbeing for stigmatized populations.”(1) This definition refers to the injustices innate in social structures that restrict the means of a specific population. Current policy in many countries makes existing stigma even worse for stigmatized groups. Society and governments often blame the victims and enact and interpret legislation based on the belief that the stigmatized people are not taking appropriate responsibility for their own health. These individuals suffer internally from bias but also suffer because society blames them for their illness and thus relinquishes the responsibility of addressing the underlying causes of their condition.(4) The U.S. government has not yet addressed public health discrimination in formal legislation, leaving millions of individuals with stigmatized illnesses to suffer unfair treatment because of their conditions.

Approaches toward changing public stigma have been categorized into three distinct paradigms: protest, education, and contact.

Intervention efforts must expand beyond individual-based strategies toward larger-scale prevention measures so that societal changes facilitate reversing the beliefs that led to stigmatizing these conditions in the first place. Structural stigma is apparent in many areas of the criminal justice system, including laws and policies. Attention to stigmatizing structures of society, such as laws and regulations, enables examination of prejudice and discrimination against people with mental and substance use disorders. Public health policy initially is constructed within the context of tracking and preventing the spread of a disease; however, discriminatory policies and practices can appear to aggravate negative social norms and deepen self-stigmatization.(5) Stigma researchers indicate that anti-stigma interventions should expand their focus on institutional goals, such as legislative and policy change, that promote social equity and improve overall quality of life for individuals with stigmatized conditions. Successful collaborations between public health officials and affected communities will rely on the public health officials’ willingness to publicly oppose current laws and policies.

Community-level mobilization may help unleash the power of resistance on the part of stigmatized individuals with intervention at the structural level. Aggleton and Parker argued that the time had come to move beyond Goffman’s initial conceptual model of stigma as a kind of mark or negatively valued difference, and think about stigma as a social process fundamentally linked to power and domination.(10) Based on principles of community organizing, new advocacy models in response to public health–related stigma should be developed. Approaches toward changing public stigma have been categorized into three distinct paradigms based on social psychology research: protest; education; and contact. Protest strategies highlight the injustices of various forms of stigma and chastise offenders for perpetuating their stereotypes and discrimination, and there is anecdotal evidence to suggest that protest can positively influence harmful behaviors. Educational approaches to stigma challenge inaccurate stereotypes about stigmatized health conditions, replacing them with factual information. Consistent with expectations, research shows that educational programs with this kind of emphasis result in reduced stigma. Interpersonal contact with members of the stigmatized group also is likely to lessen prejudice. Contact-based interventions often are combined with education, where the people who have experienced stigma are able to support and personalize the information by relating it to their own life experiences while factual information is presented.

Conclusion

Stigma is a dehumanizing phenomenon. As new diseases emerge, old diseases come back, and existing diseases remain, stigma will inevitably occur. Although people can be immunized against certain diseases, they cannot be immunized against stigma. The consequences of stigmatizing public health conditions threaten core public health values. Much of the evidence indicates that the stigma associated with numerous circumstances exacerbates the condition of the stigmatized; however, public health officials neglect the significant suffering of countless Americans by ignoring the effect of stigma. Therefore, it is crucial to replace the common societal assumptions that perpetuate stigma in public health and underscore discussion of stigma in the national discourse of public health. The association between stigma and disease is extensive. Health educators must strive to eliminate the stigma that accompanies certain illnesses. Certainly, stigma is not the only obstacle faced in the attempt to create more effective care programs in public health. However, stigma must be acknowledged as a consistent impediment to Prevention of the stigmatized diseases; therefore, it is the responsibility of public health practitioners to minimize the negative health repercussions of stigma. They should be mindful of three strategies: awareness; advocacy; and action. Awareness of the implications of stigma, advocacy for increased funding and healthcare access, and action in the form of educational delivery are needed to address the impediment of stigma in the prevention of disease. Ultimately, reducing and eliminating stigma will necessitate coordinated efforts supported at the national level of funding and implemented by effective cooperation among representative stakeholders. It is the obligation of public health officials to address and successfully reduce stigma to fulfill their mission to protect and better the public health.

References

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2. King M, Dinos S, Shaw J, et al. The Stigma Scale: development of a standardised measure of the stigma of mental illness. Br J Psychiatry. 2007;190:248-254.

3. Park J. A call to action for more effective preventative care strategies for HIV in men having sex with men (MSM): a combined computational model and qualitative analysis. J AIDS Clin Res. 2017;(8):2:1-7.

4. Pettit M. Disease and stigma: a review of literature. Health Educ. 2008; 40(2):70-76.

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6. The National Academics of Sciences, Engineering, and Medicine. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: National Academies Press; 2016.

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8. Livingston J, et al. The effectiveness of interventions for reducing stigma related to substance use disorders: a systematic review. Addiction. 2012;107(1):39-50.

9. Corrigan P, Markowitz F, Watson A. Structural levels of mental illness stigma and discrimination. Schizophr Bull. 2004;30:481-491.

10. Mahajan A, Sayles JN, Patel VA, et al.et al. Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward. AIDS. 2008 Aug; 22(Suppl 2):S67–S79.