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Do your part to reduce stigma

Lift the Weight of Words

 

 

 

 

 

 

 

“Words are things….They get on the walls. They get in your wallpaper. They get in your rugs, in your upholstery, and your clothes, and finally in to you.”

– Maya Angelou

Discover how you can help reduce stigma among all moms and babies so they can get the support and care they need.

 

This toolkit is designed to raise awareness about the impact of stigma for all March of Dimes staff and partners.

The Effects of Stigma

Social Isolation

Poor Quality of Life

Less Access to Healthcare

Delayed Diagnoses

Reduced Adherence to Treatments

Illness and Death

Why does stigma matter?

Stigma keeps people from the best possible care. Women with substance use disorders, infectious diseases, mental health, or other health conditions can often feel judged and blamed by family, friends, and healthcare providers, which can keep them from getting the care they need.

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.

  • What is stigma?

    Stigma is…

    • Assigning an undesirable label or stereotype to an individual or an entire group.
    • The invisible mark left by negative social perceptions.

    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

  • Why does stigma matter?

    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).
  • Why does stigma happen?

    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.

    Bias Development

    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.

    Stigmatizing Behavior

    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
  • What does stigma look like?

    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

    • Individual

      Perceived Stigma

      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.

      Anticipated Stigma

      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.

      Internalized (self-stigma)

      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

      Enacted Stigma

      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.

      Experienced Stigma

      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.

      Secondary Stigma

      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.

    • Organizational

      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.

    • Community

      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.

    • Public Policy

      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.

1. Be aware of your own prejudice

A first step toward reducing stigma is to recognize that you hold judgmental attitudes and beliefs. Try picking one day and tracking every time you think something judgmental about another person.

 

2. Always use person-first language

By using person-first language—“someone with opioid use disorder” as compared with “an addict”—you can also change others’ beliefs and perceptions. Don’t perpetuate stigma by defining people by their condition or situation. Better health is an ongoing effort for all of us.

 

3. Educate yourself and others

Show this toolkit to your coworkers, friends, and family who might want to reduce stigma. Share on social media how you’re making a difference to reduce stigma.

 

 

4. Make your work a “judgment-free zone”

Encourage your workplace to sign a letter of commitment to be free from judgment and stigma. Also, consider asking employees to sign a pledge or you can post “judgment-free zone” signs around the building.

 

5. Start conversations about stigma

Share your own experiences with stigma to build empathy with others. Instead of calling out an individual for stigmatizing behaviors, share a time when you internalized negative beliefs based on stereotypes. This is called “self-stigma.” Your story can be a conversation starter about how pervasive and harmful these stereotypes can be.

 

6. Form a stigma-free task force

Gather a team of people across all levels of your workplace or organization and kick off a stigma-free task force by developing an action plan to reduce stigma. The task force can organize special events or trainings about reducing stigma. And share social media posts about their efforts.

Be a Change Agent

You don’t have to alter your entire workplace or community to help reduce stigma. Small changes can have an impact and lead to even bigger changes.

 

Here are 6 ways you can reduce stigma, starting with quick wins and leading to bigger efforts.

KEEP LEARNING

 

 The learning and growing doesn’t stop here.

 

Check out these additional resources to expand your stigma knowledge and find more ways to create change.

  • FRAMEWORK

    The Health and Discrimination Framework

    The health and discrimination framework figure below shows the stigmatization process as it unfolds across the socioecological health spectrum. To “underscore that all individuals can anticipate, perceive, internalize, experience, or perpetuate health-related stigma,” the framework does not distinguish between those who are “stigmatized” and the “stigmatizer” (Stangl et al., 2019, p. 4).

    • The framework begins with the drivers and facilitators of health-related stigma. Although the drivers are “inherently negative”—for example, stereotypes and prejudice—facilitators may be either positive or negative influences, such as cultural or social norms and health policy.
    • These drivers and facilitators determine whether stigma “marking” occurs. This is when stigma is “applied to people or groups according to a specific health condition or other perceived difference such as race, class, gender, sexual orientation or occupation” (Stangl et al., 2019, p. 2).
    • Stigma then manifests in a range of stigma experiences – or lived realities, which can include perceived stigma, self-stigma, and discrimination.
    • Stigma also manifests in practices, which can include beliefs (such as stereotypes), attitudes (such as prejudice), and actions (such as discrimination) toward people in a stigmatized group.
    • These types of stigma can influence outcomes for individuals within a stigmatized or affected population, including access to and acceptance of healthcare services. Stigma can also influence outcomes for organizations and institutions.
    • These population and organizational outcomes can then have health and social impacts, including affecting rates of illness and death, quality of life, and social inclusion and well-being.

    This framework is useful in helping to identify when, where, and how to make changes to reduce stigma.

    Figure Source: Stangl et al., 2019

  • references

    Cooper, S., & Nielsen, S. (2017). Stigma and social support in pharmaceutical opioid treatment populations: A scoping review. International Journal of Mental Health and Addiction, 15(2), 452–469. http://dx.doi.org/10.1007/s11469-016-9719-6

    Corrigan, P.W., Druss, B.G., & Perlick, D.A. (2014). The impact of mental illness stigma on seeking and participating in mental health care. Psychological Science in the Public Interest, 15(2), 37–70. https://doi.org/10.1177/1529100614531398

    Corrigan, P.W., & Nieweglowski, K. (2018). Stigma and the public health agenda for the opioid crisis in America. International Journal on Drug Policy, 59, 44–49. http://dx.doi.org/10.1016/j.drugpo.2018.06.015

    Dawson, D.A., Grant, B.F., Stinson, F.S., Chou, P.S., Huang, B., & Ruan, W.J. (2005). Recovery from DSM-IV alcohol dependence: United States, 2001–2002. Addiction, 100(3), 281–292. http://dx.doi.org/10.1111/j.1360-0443.2004.00964.x

    Hatzenbuehler, M.L., Phelan, J.C. & Link, B.G.(2013.  Stigma as a fundamental cause of population health inequities. American Journal of Public Health. Am J Public Health.103:813–821. doi:10.2105/AJPH.2012.301069

    Howard, H. (2015). Reducing stigma: Lessons from opioid-dependent women. Journal of Social Work Practice in the Addictions, 15(4), 418–438. http://dx.doi.org/10.1080/1533256X.2015.1091003

    Johnson, L.A., Schrier, A.M., Swanson, M., Moye, J.P., & Ridner, S. (2019). Stigma and quality of life in t patients with advance lung cancer. Oncology Nursing Forum, 46(3), 318–328. doi:10.1188/19.ONF.318-328

    Kamaradova, D., Latalova, K., Prasko, J., Kubinek, R., Vrbova, K., Mainerova, B., … Tichackova, A. (2016). Connection between self-stigma, adherence to treatment, and discontinuation of medication. Patient preference and adherence, 10, 1289–1298. doi:10.2147/PPA.S99136  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4966500/pdf/ppa-10-1289.pdf

    Latkin, C.A., Gicquelais, R.E., Clyde, C., Dayton, L., Davey-Rothwell, M., German, D., …Tobin, K. (2019). Stigma and drug use settings as correlates of self-reported, non-fatal overdose among people who use drugs in Baltimore, Maryland. International Journal of Drug Policy, 68, 86–92. doi:10.1016/j.drugpo.2019.03.012

    Livingston, J.D., Milne, T., Fang, M.L., & Amari, E. (2012). The effectiveness of interventions for reducing stigma related to substance use disorders: A systematic review. Addiction, 107(1), 39–50. doi: 10.1111/j.1360-0443.2011.03601.x

    Mannheimer, S., Wang, L., Wilton, L., Tieu, H.V., del Rio, C. … Mayer, K.H. on behalf of the HPTN 061 Study Team. (2014). Infrequent HIV testing and late HIV diagnosis are common among a cohort of black men who have sex with men (BMSM) in six US cities. Journal of Acquired Immune Deficiency Syndrome, 67(4), 438–445. doi:10.1097/QAI.0000000000000334

    National Academy of Sciences, Engineering and Medicine. (2016).  Ending discrimination against people with mental and substance use disorders: The evidence for stigma change. Washington, DC: The National Academies Press. https://doi.org/10.17226/23442

    Pescosolido, B.A. (2013).  The public stigma of mental illness: What do we think; what do we know; what can we prove? Journal of Health and Social Behavior, 54(1), 1–21. https://doi.org/10.1177%2F0022146512471197

    Stangl, A.L., Earnshaw, V.A., Logie, C.H., van Brakel, W., Simbayi, L.C., Barré, I., & Dovidio, J.F. (2019). The Health Stigma and Discrimination Framework: A global, crosscutting framework to inform research, intervention development, and policy on health-related stigmas. BMC Medicine, 17, 31. https://doi.org/10.1186/s12916-019-1271-3

    van Brakel, W.H., Cataldo, J., Grover, S., Kohrt, B.A., Nyblade, L., Stockton, M., Wouters, E., & Yang, L.H. (2019). Out of the silos: identifying cross-cutting features of health-related stigma to advance measurement and intervention. BMC Medicine, 17, 13. https://doi.org/10.1186/s12916-018-1245-x

     

What You Can Do

Discover how you can make a difference by reducing stigma in your workplace and community.

 

CLEAN SLATE

Stories of Stigma

See me for who I am. I am not a label. I am not my health condition. I am me.

 

Click each image below to see and hear stories from people impacted by stigma.

Stories are based on actual people and events. However, to protect privacy, some details have been changed or stories compiled.

 

Say This, Not That

Make a commitment to stop using words that stigmatize, dehumanize and are harmful to others.

 

And not just when you’re talking to someone with a stigmatized health condition. It might not always seem obvious, but how we speak and the words we put out into the world affect the perceptions and attitudes around us. Health conditions and the challenges someone is facing can be invisible. You don’t always know who you are talking to and who else is listening.

 

Use Person-First Language

Person-first language puts the person before the diagnosis. It emphasizes the person, not their medical condition or disability.

Rearranging words is a powerful way to not let the diagnosis define the person.

To see alternative language for some stigmatizing words, click on the diamonds below.

Person experiencing homelessness

Person living with HIV

Infant exposed to substances in the womb

Person with disabilities

Person who is receiving social assistance benefits

Infant who
is born prematurely

Person living with a mental illness

Person with a substance use disorder

Infant infected with Zika

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