Stigma and Discrimination Research Toolkit

The Stigma and Discrimination Research toolkit is a collection of evidence and resources related to stigma and discrimination research. Health-related stigma and discrimination research has produced theories, models, frameworks, measures, methods, and interventions that can be applied across conditions and populations to help reduce the impact of stigma and discrimination.

This toolkit may be helpful for researchers, government officials looking to incorporate research into policy, community agencies, and various other stakeholders across disciplines and sectors. This toolkit includes a special emphasis for those looking to address stigma and discrimination issues related to the coronavirus (COVID-19)  pandemic.

This toolkit was developed by NIMH, in partnership with the Fogarty International Center (FIC), the National Institute on Drug Abuse (NIDA), and the NIH Stigma Scientific Interest Group.

About Stigma

Stigma is a social phenomenon that involves negative attitudes (prejudices) or beliefs (stereotypes) about others typically (but not always) based on defining characteristics such as sexuality or health conditions (e.g., HIV, mental illness, or substance use) that are perceived to be contagious, dangerous, or incurable. It is relational in nature as occurring in the context of power. Goffman defined stigma as “an attribute that is deeply discrediting” that reduces the individual “from a whole and usual person to a tainted, discounted one.”[1]   Stigma and the process of stigmatization consists of identifying and labeling a “difference,” linking a labeled person to undesirable characteristics, and separating “them” from “us”; thus, the stigmatized group (“them”) subsequently experiences discrimination and loss of status in the context of social, economic and political power. For example:

• Health-related stigma happens when people have or are associated with a specific health condition perceived as undesirable. As a result of this stigma, they may avoid seeking screening or treatment or are treated differently or poorly by others because of it.
• Health-related discrimination is discrimination based on a health condition, disease, or another health-related issue. It may occur in the workplace, health care, education, housing, and other settings.

There are multiple types of health-related stigma, including:  

• Internalized stigma: The individual believes they are bad or at fault for having a health condition
• Enacted stigma: The individual experiences discrimination from others because they are known or believed to have a health condition
• Anticipated stigma: The individual expects or fears future discrimination due to the health condition
• Associated stigma: Others, such as family members or healthcare workers, experience discrimination because of their proximity to those with a health condition.
• Perceived stigma: An individual’s perceptions about how stigmatized groups are treated due to a health condition.

Stigma exists at multiple levels:

• Individual level: A person’s cognitive, affective, and behavioral responses to facing or experiencing stigma, including concealment and disclosure, internalization, and stigma consciousness
• Interpersonal level: Discrimination as expressed by one person toward another, manifesting in ways such as lack of respect, devaluation, and dehumanization
• Structural level: Societal-level conditions, cultural norms, and institutional policies that constrain the opportunities, resources, and well-being of the stigmatized [2 ]

Stigma’s Impact on Health

Research shows that health-related stigma for any condition is not just a social problem. It can have detrimental impacts on how health care is sought, accessed, and delivered, and slow scientific progress. Stigma is also associated with poor health outcomes and reduced service utilization. For example, stigma related to conditions like HIV, tuberculosis, epilepsy, and substance use, increases the likelihood that the individual will develop a related mental disorder like depression or anxiety. In addition, research shows that stigma reduces quality of life and makes individuals less likely to seek out needed care.

Language and Stigma

The language we use to talk about health plays a crucial role in shaping opinions and beliefs about a disease or condition, and the people affected. Scientific and medical terminology typically used by the research community may inadvertently create or perpetuate stereotypes about diseases or drive fear and “othering.”

Proactively using language that empowers individuals and communities, and takes patient experience into account, can help individuals communicate about health in a non-stigmatizing way. The below language guides offer examples.

• National Institute of Allergy and Infectious Diseases (NIAID) HIV Language Guide : This guide includes language suggestions for communicating about HIV and related topics. The Language Guide describes current thinking and best practices and procedures. It aims to help scientists, administrators, and researchers use fair, accurate, and respectful language and aid funded research networks, sites, centers, investigators, and stakeholders as they draft protocols and develop communications and outreach materials.
• National Institute on Drug Abuse (NIDA) Preferred Language for Talking About Addiction : Addiction is a chronic but treatable health condition. Often unintentionally, many people still talk about addiction in ways that are stigmatizing—meaning they use words that can portray someone with a substance use disorder (SUD) in a shameful or negative way that may prevent individuals from seeking treatment for SUDs. With simple changes in language, stigma and negativity around SUDs can be reduced or avoided. This resource discusses what stigma is, how it affects people with SUD, and how to change language usage.