STIGMA: UNDERSTANDING THE PROBLEM
“If we do not appreciate the nature and impact of stigma, none of our interventions can begin to be successful.” Edward Cameron, Constitutional Court Justice, South Africa
What is stigma and why does it happen? Click the tabs below to understand the roots of stigma and recognize the signs of stigma in your work.
Stigma, bias, prejudice, and discrimination – all critical concepts, but how are they different? And how do they relate to each other? All four are expressions of oppression – in other words, one group with power taking advantage of or benefiting from the mistreatment of another group (Paradies, Truong, & Priest, 2016). Fortunately, research on all four concepts as they relate to public health has been expanding (Stuber, Meyer, and Link, 2008).
“A mark of disgrace associated with a particular circumstance, quality, or person” (Lexico from the Oxford Dictionary, 2021). Research on health-related stigma has typically examined people with transmissible diseases, such as HIV, or those with rare or atypical conditions, such mental illness (Stuber, Meyer, and Link, 2008).
“Preconceived opinion that is not based on reason or actual experience” (Lexico from the Oxford Dictionary, 2021). Prejudice research tends to focus on the negative effects of the unwarranted judgment of common characteristics typically unrelated to specific health conditions, such as gender, age, race and class divisions (Stuber, Meyer, and Link, 2008).
“Unconscious favoritism toward or prejudice against people of a particular ethnicity, gender, or social group that influences one's actions or perceptions” (Lexico from the Oxford Dictionary, 2021). When related to public health and research, this concept is commonly considered within the context healthcare delivery to describe unconscious forms of discrimination (Stuber, Meyer, and Link, 2008).
“The unjust or prejudicial treatment of different categories of people, especially on the grounds of ethnicity, age, sex, or disability” (Lexico from the Oxford Dictionary, 2021). Discrimination is often considered the behavioral act or manifestation of stigma, prejudice, or bias, resulting in potentially negative health consequences (Paradies, Truong, & Priest, 2016).
Health-related stigma is “a social process or personal experience related to a health condition, characterized by the perception of exclusion, rejection, and blame, and contributes to psychological, physical, and social morbidity.” — van Brakel et al., 2019
Barriers to Health
Stigma has consequences for the person who is stigmatized. They often feel ashamed and unworthy, resulting in self-stigma, lower self-esteem, and depression. The connection between stigma and barriers to health and wellness is supported by research (van Brakel et al., 2019). Although the types of stigma may vary by health condition and across cultures, the effects are notably alike.
Stigma or the fear of stigma may stop someone from sharing their health condition with partners or family members and from accessing the health services and support services they need. They know if they disclose their health condition, they will be labelled and stigmatized. For example, research shows that the more people living with HIV are stigmatized, the less willing they are to get tested for HIV.
People who experience health-related stigma also experience:
- Social isolation: A study found that 56% of people do not want to spend an evening socializing with someone with a mental illness (Pescosolido, 2013).
- Poor quality of life: A study on people with lung cancer found that stigma was associated with lower levels of quality of life (Johnson et al, 2019).
- Less access to healthcare: Numerous studies found a link between stigma related to substance use disorder and avoiding seeking treatment. Other studies found that many healthcare providers hold stigmatizing attitudes toward people who have substance use disorder (Cooper & Nielsen, 2017; Corrigan & Nieweglowski, 2018; Howard, 2015; Livingston et al., 2011; Dawson et al., 2005).
- Delayed diagnosis of a condition: A study on men living with HIV found that a high level of internalized stigma was associated with less frequent HIV testing (Mannheimer et al, 2014).
- Reduced adherence to treatments: A study with people living with serious mental health disorders found that people who had higher levels of self-stigma were less likely to adhere to their treatments (Kamaradova et al, 2016).
- Illness and death: A study showed that stigma has been found to be associated with overdoses related to substance use disorders (Latkin et al, 2019).
Beliefs and Fears
Stigma is driven by our conscious and unconscious beliefs and fears. To cope with feeling vulnerable, we stigmatize others to allow ourselves to feel safer, as if whatever happens to “them” could not happen to “us.”
Emotionally Respond to an Individual
The process begins when we have a negative emotional response, such as fear, toward another person or social group.
Distinguishing and Labeling Differences
To cope with these negative emotions, we try to create social distance between the group and ourselves. To create this distance, we apply a negative label to the person or group.
We also might:
- Express disapproval of the person’s or the group’s behaviors (especially if the behaviors make us feel uncomfortable).
- Convey superiority, which is a way of saying “I’m better than you” and “I would never do something like that.”
- Create a mental boundary by detailing how those in the stigmatized group are different from us.
These beliefs create a stereotype of people within a group. Stereotyping is when we prejudge an entire group, which blinds us to differences among the people within that group.
Our internalized bias can cause us to
- devalue group members
- treat them as undeserving of sympathy, care, or assistance
- sometimes blame them for their condition or situation
Depending on the situation, stigma can look and feel different.
Stigma is most readily found in the language we use, like calling someone with substance use disorder a “junkie” or calling someone with an STD “promiscuous.”
It typically involves making judgments about people that are revealed through gossiping, name calling, blaming, and shaming. Stigma also can be expressed just by the way we look at someone or ignore them entirely.
And stigma isn’t always seen or heard. It can be felt even when no obvious act of discrimination occurs. For example, a doctor might spend less time with a pregnant woman who smokes cigarettes, thinking she’s not taking her pregnancy seriously.
People are often unaware that their words or behaviors are stigmatizing.
Levels of Stigma
Stigma occurs at different levels including the public policy, community, organizational, interpersonal and individual levels.
Click each word of the figure to see what stigma looks like at each of these levels.
Perception of the prevalence of stigmatizing attitudes in the community or among other groups (such as healthcare providers).
Example: A person with a sexually transmitted infection feeling like their new partner will judge them for getting infected in the past.
Fear of stigma whether or not it is actually experienced.
Example: A woman fearing that her healthcare provider will blame her for contracting Zika while traveling in Puerto Rico.
When someone accepts the blame and rejection of society’s stigmatizing attitudes and behaviors. They feel the weight of stigma and believe they are “less than” and unworthy.
Example: A person with a disability feeling they are unable to achieve the same accomplishments or opportunities because others treat them as different or “lesser than.”
Interpersonal acts of discrimination based on stigmatizing attitudes or beliefs.
Example: Crossing the street when you see someone who is homeless or not hiring a caregiver because of her race.
Physical, cognitive (such as thoughts), and emotional responses experienced by a person after being exposed to stigmatizing attitudes, beliefs and behaviors.
Example: A new mom feeling that she is weak or crazy for experiencing postpartum depression.
Observed or Vicarious Stigma
Witnessing stigmatizing behaviors toward someone else.
Example: Watching others stare in disgust at an overweight person.
Stigma by association that is extended to the family or other caregivers of a stigmatized individual. This form of stigma affects people who are associated with stigmatized groups and who often face stigma themselves.
Example: The parents of an adolescent who has an opioid use disorder (OUD) may be stigmatized themselves or a healthcare provider who is stigmatized for treating people with OUD.
Organizations, social institutions, and workplace rules or policies that constrain opportunities, resources, and well-being for stigmatized groups (Stagle et al., 2019).
Example: Not having wheelchair access in healthcare clinics and community-based organizations.
Negative attitudes, beliefs, and behaviors held within a community, culture, or group. This is also called “social norms” (National Academy of Sciences, 2016).
Example: The belief that people on Medicaid are lazy or a drain on the system.
National and local laws and policies that constrain opportunities, resources, and well-being for stigmatized groups (Hatzenbuehler, Phelan & Link, 2013).
Example: Not allowing lactating mothers to breastfeed in public.
Intersectional or Layered Stigma
A person may experience more than one type of stigma. For example, they may experience stigma because they are a racial or ethnic minority and because they have a mental illness.