March of Dimes Beyond Labels: Substance Use Stigma

BEYOND LABELS

DO YOUR PART TO REDUCE STIGMA AROUND SUBSTANCE USE DISORDER AND PREGNANCY

Stigma related to substance use disorder (SUD) affects pregnant women by creating social isolation and barriers to treatment.

 

Pregnant women who use or misuse tobacco, alcohol, opioids, and other substances often experience stigma at multiple levels. People with substance use disorder are more stigmatized because their illness is seen as a result of their own behavior.

 

Additionally, pregnant women have to cope with self-stigma and feelings of guilt or shame about the related risks of substance use to the health of their baby.

How Attitudes and Beliefs affect Access to Care

Societal beliefs frame SUD as a personal flaw or failure.

 

This framing may influence how healthcare professionals perceive and treat pregnant women with SUD, sometimes using language that makes pregnant women feel blamed or shamed.

Fear and judgment of this stigma (blame and shame) cause pregnant women with SUD to be less likely to seek help and stick with treatment.

Lack of or delayed prenatal  care and treatment for SUD put the developing baby and pregnant mom at a greater risk for negative health outcomes.

Societal beliefs frame SUD as a personal flaw or failure.

 

This framing may influence how healthcare professionals perceive and treat pregnant women with SUD, sometimes using language that makes pregnant women feel blamed or shamed.

Fear and judgment of this stigma (blame and shame) cause pregnant women with SUD to be less likely to seek help and stick with treatment.

Lack of or delayed prenatal  care and treatment for SUD put the developing baby and pregnant mom at a greater risk for negative health outcomes.

Source: (White, 2009).

Source: (White, 2009).

UNDERSTANDING THE PROBLEM

 

THE EFFECTS OF SUBSTANCE USE-RELATED STIGMA

 

 

What is addiction, really? It is a sign, a signal, a symptom of distress. It is a language that tells us about a plight that must be understood. 

- Alice Miller

 

  • Why is there so much stigma around substance use disorder?

    A survey (2014) of 709 Americans by Johns Hopkins University looked at stigma toward people with substance use disorders:

    said they would not work with someone with an SUD.

    said employers should have the right to deny employment to someone with an SUD.

    said people with SUDs should not be granted the same health insurance benefits as other individuals.

    • Pregnancy adds an additional layer of stigma to substance use disorders.

      Some people, including health professionals, may be inclined to blame mothers of children born with conditions, such as Neonatal Abstinence Syndrome or Fetal Alcohol Syndrome. However, it is often this shame that keeps women from receiving the treatment they need to address substance use disorders.

  • How does stigma toward women who have a substance use disorder prevent them from getting healthcare and treatment?

    • Fear of Disclosure to Providers

      Many women with SUDs fear the legal and criminal consequences for them and their baby – like ending up in jail or having their babies taken away from them – if they disclose their substance use to their provider, so they skip appointments and avoid prenatal care.

      According to the Guttmacher Institute (2020):

      23 states, as well as the District of Columbia, consider substance use during pregnancy to be child abuse under civil child-welfare statutes.

      25 states, as well as the District of Columbia, require healthcare professionals to report suspected prenatal substance use.

      8 states require healthcare professionals to test women for prenatal drug exposure if they suspect substance use.

    • Fear of Losing Social Network

      Also, many pregnant women with substance use disorders don’t tell their family or friends they are dealing with addiction because they’re worried about disappointing or embarrassing them.  They often isolate themselves, negatively affect both their mental and physical health (White, 2009).

  • How does substance use-related stigma toward pregnant women affect babies?

    Because stigma is a substantial barrier to care, it has serious implications for the health of pregnant women with substance use disorders and their babies.

    Exposure to substances during pregnancy can cause serious problems for newborns. Depending on the substance (e.g. opioids, alcohol, tobacco), infants may experience a range of health challenges such as

    • premature birth,

    • low birthweight,

    • breathing problems,

    • feeding problems,

    • vision or hearing problems,

    • abnormal facial features, and

    • longer-term developmental problems.

    Pregnant women, themselves, are also at risk for health problems, including complications during pregnancy and labor and delivery (Lamy et al, 2015), as well as the risk for maternal overdose depending on the substance.

  • How can we ensure that pregnant women with substance use disorders get the care they need?

    1. Create safe, caring, and supportive environments and relationships that are free from stigma (Stone, 2015).

    2. Eliminate blaming and shaming pregnant women with substance use disorders, as this only drives them away from the care and support they need (Thigpen et al., 2014; Krans et al., 2015)

    3. Inform women with SUD that help is available and encourage them to seek treatment (FindTreatment.gov).

KNOW THE FACTS

 

 

What we see in the media, what we’re taught by our families and in school, and what we’ve learned in our jobs all shape our thoughts and beliefs about pregnant women with substance use disorder.  However, these thoughts and beliefs might not be based on the most current facts.

 

Click on the tiles below to find the answers to these questions.

 

 

 

QUESTION

 

Should pregnant women using opioids or other substances stop using them immediately?

ANSWER: No. Going “cold turkey” from opioid use—even when medically supervised—is not currently recommended. Doing this is associated with higher rates of relapse for the mother and worse outcomes for the baby. Maintaining the stability of the patient is the recommended course of treatment for both the mother and baby.

Source: SAMHSA, 2018

 

 

 

QUESTION

 

 What are success rates for SUD treatment compared to other health conditions?

ANSWER: Success rates for SUD treatment are similar to success rates for certain other health conditions. For example, SUD treatment has the same success rate as the treatment of asthma or diabetes. In addition, people with substance use disorders, in particular, are as likely to adhere to treatment as people with other chronic medical conditions, such as hypertension or diabetes.

Source: National Institute on Drug Abuse, 2018

 

 

 

QUESTION

 

Can women receive medication-assisted treatment (MAT), such as methadone or buprenorphine, while pregnant?

ANSWER: Safe and effective interventions exist for pregnant women, including MAT. MAT helps control symptoms, such as cravings, which helps the mother regain control over decisions and rebuild a more stable life and social environment. Use of these interventions can result in healthy outcomes for both the mother and baby.

Source: SAMHSA, 2018

 

 

 

QUESTION

 

Should women who smoke breastfeed their baby?

ANSWER: While mothers are encouraged to quit smoking while breastfeeding, the benefits of breast milk outweigh any potential risks of smoking. The CDC suggests not smoking while breastfeeding the baby and making sure the home is smoke free.

Source: CDC, 2019

STORIES OF SUBSTANCE USE STIGMA

 

 

 

See me for who I am. I am not a label.
I am not my substance use disorder. I am me.

 

 

Watch the video to hear stories about women impacted by stigma.

WHAT YOU CAN DO

 

Now that you understand why there is so much stigma around substance use disorders and how it affects pregnant women and new mothers, what can you do to make a difference? Use the tool below to reflect on your own beliefs and then discover steps you can take to change the conversation around SUDs in your organization and community.

 

TAKE A CLOSER LOOK AT YOUR OWN BELIEFS

 

Even with our best intentions and efforts to be accepting of others, we may have implicit and unconscious bias about SUDs. It’s important to take a closer look at your own beliefs and compare them with evidence-based recommendations by trusted organizations.

 

Read each statement below and indicate whether you strongly agree, agree, somewhat agree, somewhat disagree, disagree, or strongly disagree. Then take a closer look.

 

Note: Your answers will be completely anonymous and will not be saved. This tool is intended to help you self-reflect and evolve, not place judgment on any of your attitudes or beliefs.

Click the circles above to move between questions.

It’s important to stop and assess your own beliefs and find out if they’re based on up-to-date evidence and recommendations from professional organizations that you trust.

Understand the Power of Words

 

 

"If you think of it like that, you think of the person first and not I'm an addict but a person with addiction like a person with an affliction, [I] think that will help with the stigma."

Source: Beyond Labels Substance Use Stigma Video Stories

 

Can the words and labels we use make a difference in the way we treat people or affect their health?

 

Read about two studies that explore the question of whether using “substance abuser” as compared with “having a substance use disorder” has an effect on healthcare professionals’ or the public’s judgments about a person.

 

Change the conversation

 

It can be difficult to know how to respond to our colleagues and community members when they use stigmatizing language or when they talk about addiction or substance use disorders in a way that perpetuates misinformation, blame, and shame.

 

Use the tips below to change the conversation around substance use and create a cultural shift in your organization or community.

Frame substance use disorder as a medical condition.

Professional organizations—such as the American Society of Addiction Medicine and the National Institute on Drug Abuse—support framing substance use disorder as a treatable chronic medical condition, similar to treating heart disease or diabetes.

 

Try saying...

Substance use disorder (SUD) is a chronic disease like diabetes. It can be treated with medication and behavioral therapy, which have been proven to work much more effectively than just suddenly stopping. People can and do recover from SUDs. Success rates for SUD treatment are similar to success rates for the treatment of asthma.

 

 

 

 

When someone says... Substance use disorders or addiction are a behavior or habit that a person can stop if they really want to.

 

 

 

Try saying...

Person with substance use disorder

Person in recovery or remission

Person with a positive drug test

Person living with substance use disorder

Someone who had a setback in his/her recovery from substance use disorder

Baby with [condition (e.g., neonatal abstinence syndrome)]

 

 

 

 

Instead of saying... Addict or alcoholicCleanDirty drug testSuffering from addictionRelapsedBaby addicted to [substance]

 

 

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.

Emphasize that  substance use disorder can affect anyone.

Organizations such as the American College of Obstetricians and Gynecologists and the American Academy of Pediatrics encourage universal screening of all women for opioid use disorder to avoid any assumptions or bias about who might be at risk.

 

Try saying...

Anyone can become addicted. In fact, many people with substance use disorders have jobs and families and do not exhibit obvious challenges in everyday functioning.

 

 

 

 

When someone says... You can recognize an addict just by looking at them.

 

 

 

Try saying...

People dealing with SUDs need compassion. When people do not feel welcome or accepted, they’re less likely to be honest and ask for help so they can create stability in their lives and be productive members of society.

 

 

 

 

 

When someone says... People with SUDs are selfish and they brought this on themselves. They don’t deserve handouts.

 

 

Avoid blaming the individual.

Making a person with substance use disorder feel that they’re weak-willed can perpetuate self-stigma and make them less likely to seek healthcare treatment and social support from family and friends.

By changing the conversation around substance use disorder, we are helping to change the beliefs and behaviors of others which can help reduce substance use disorder stigma and its effects on pregnant women and their babies.

KEEP LEARNING

 

 

 

QUESTION

 

Should pregnant women using opioids or other substances stop using them immediately?

ANSWER: No. Going “cold turkey” from opioid use—even when medically supervised—is not currently recommended. Doing this is associated with higher rates of relapse for the mother and worse outcomes for the baby. Maintaining the stability of the patient is the recommended course of treatment for both the mother and baby.

Source: SAMHSA, 2018

 

 

 

QUESTION

 

 What are success rates for SUD treatment compared to other health conditions?

ANSWER: Success rates for SUD treatment are similar to success rates for certain other health conditions. For example, SUD treatment has the same success rate as the treatment of asthma or diabetes. In addition, people with substance use disorders, in particular, are as likely to adhere to treatment as people with other chronic medical conditions, such as hypertension or diabetes.

Source: National Institute on Drug Abuse, 2018

 

 

 

QUESTION

 

Can women receive medication-assisted treatment (MAT), such as methadone or buprenorphine, while pregnant?

ANSWER: Safe and effective interventions exist for pregnant women, including MAT. MAT helps control symptoms, such as cravings, which helps the mother regain control over decisions and rebuild a more stable life and social environment. Use of these interventions can result in healthy outcomes for both the mother and baby.

Source: SAMHSA, 2018

 

 

 

QUESTION

 

Should women who smoke breastfeed their baby?

ANSWER: While mothers are encouraged to quit smoking while breastfeeding, the benefits of breast milk outweigh any potential risks of smoking. The CDC suggests not smoking while breastfeeding the baby and making sure the home is smoke free.

Source: CDC, 2019

 

 

 

QUESTION

 

Should pregnant women using opioids or other substances stop using them immediately?

ANSWER: No. Going “cold turkey” from opioid use—even when medically supervised—is not currently recommended. Doing this is associated with higher rates of relapse for the mother and worse outcomes for the baby. Maintaining the stability of the patient is the recommended course of treatment for both the mother and baby.

Source: SAMHSA, 2018

 

 

 

QUESTION

 

 What are success rates for SUD treatment compared to other health conditions?

ANSWER: Success rates for SUD treatment are similar to success rates for certain other health conditions. For example, SUD treatment has the same success rate as the treatment of asthma or diabetes. In addition, people with substance use disorders, in particular, are as likely to adhere to treatment as people with other chronic medical conditions, such as hypertension or diabetes.

Source: National Institute on Drug Abuse, 2018

 

 

 

QUESTION

 

Can women receive medication-assisted treatment (MAT), such as methadone or buprenorphine, while pregnant?

ANSWER: Safe and effective interventions exist for pregnant women, including MAT. MAT helps control symptoms, such as cravings, which helps the mother regain control over decisions and rebuild a more stable life and social environment. Use of these interventions can result in healthy outcomes for both the mother and baby.

Source: SAMHSA, 2018

 

 

 

QUESTION

 

Should women who smoke breastfeed their baby?

ANSWER: While mothers are encouraged to quit smoking while breastfeeding, the benefits of breast milk outweigh any potential risks of smoking. The CDC suggests not smoking while breastfeeding the baby and making sure the home is smoke free.

Source: CDC, 2019

 

 

 

QUESTION

 

Can women receive medication-assisted treatment (MAT), such as methadone or buprenorphine, while pregnant?

ANSWER: Safe and effective interventions exist for pregnant women, including MAT. MAT helps control symptoms, such as cravings, which helps the mother regain control over decisions and rebuild a more stable life and social environment. Use of these interventions can result in healthy outcomes for both the mother and baby.

Source: SAMHSA, 2018

 

 

 

QUESTION

 

Should pregnant women using opioids or other substances stop using them immediately?

ANSWER: No. Going “cold turkey” from opioid use—even when medically supervised—is not currently recommended. Doing this is associated with higher rates of relapse for the mother and worse outcomes for the baby. Maintaining the stability of the patient is the recommended course of treatment for both the mother and baby.

Source: SAMHSA, 2018

 

 

 

ANSWER: While mothers are encouraged to quit smoking while breastfeeding, the benefits of breast milk outweigh any potential risks of smoking. The CDC suggests not smoking while breastfeeding the baby and making sure the home is smoke free.

Source: CDC, 2019

QUESTION

 

Should women who smoke breastfeed their baby?

 

 

 

ANSWER: Success rates for SUD treatment are similar to success rates for certain other health conditions. For example, SUD treatment has the same success rate as the treatment of asthma or diabetes. In addition, people with substance use disorders, in particular, are as likely to adhere to treatment as people with other chronic medical conditions, such as hypertension or diabetes.

Source: National Institute on Drug Abuse, 2018

QUESTION

 

 What are success rates for SUD treatment compared to other health conditions?

 

 

 

QUESTION

 

Should pregnant women using opioids or other substances stop using them immediately?

ANSWER: No. Going “cold turkey” from opioid use—even when medically supervised—is not currently recommended. Doing this is associated with higher rates of relapse for the mother and worse outcomes for the baby. Maintaining the stability of the patient is the recommended course of treatment for both the mother and baby.

Source: SAMHSA, 2018

 

 

 

QUESTION

 

 What are success rates for SUD treatment compared to other health conditions?

ANSWER: Success rates for SUD treatment are similar to success rates for certain other health conditions. For example, SUD treatment has the same success rate as the treatment of asthma or diabetes. In addition, people with substance use disorders, in particular, are as likely to adhere to treatment as people with other chronic medical conditions, such as hypertension or diabetes.

Source: National Institute on Drug Abuse, 2018

 

 

 

QUESTION

 

Can women receive medication-assisted treatment (MAT), such as methadone or buprenorphine, while pregnant?

ANSWER: Safe and effective interventions exist for pregnant women, including MAT. MAT helps control symptoms, such as cravings, which helps the mother regain control over decisions and rebuild a more stable life and social environment. Use of these interventions can result in healthy outcomes for both the mother and baby.

Source: SAMHSA, 2018

 

 

 

QUESTION

 

Should women who smoke breastfeed their baby?

ANSWER: While mothers are encouraged to quit smoking while breastfeeding, the benefits of breast milk outweigh any potential risks of smoking. The CDC suggests not smoking while breastfeeding the baby and making sure the home is smoke free.

Source: CDC, 2019
  • Why is there so much stigma around substance use disorder?

    A survey (2014) of 709 Americans by Johns Hopkins University looked at stigma toward people with substance use disorders:

    said they would not work with someone with an SUD.

    said employers should have the right to deny employment to someone with an SUD.

    said people with SUDs should not be granted the same health insurance benefits as other individuals.

    • Pregnancy adds an additional layer of stigma to substance use disorders.

      Some people, including health professionals, may be inclined to blame mothers of children born with conditions, such as Neonatal Abstinence Syndrome or Fetal Alcohol Syndrome. However, it is often this shame that keeps women from receiving the treatment they need to address substance use disorders.

  • How does stigma toward women who have a substance use disorder prevent them from getting healthcare and treatment?

    • Fear of Disclosure to Providers

      Many women with SUDs fear the legal and criminal consequences for them and their baby – like ending up in jail or having their babies taken away from them – if they disclose their substance use to their provider, so they skip appointments and avoid prenatal care.

      According to the Guttmacher Institute (2020):

      23 states, as well as the District of Columbia, consider substance use during pregnancy to be child abuse under civil child-welfare statutes.

      25 states, as well as the District of Columbia, require healthcare professionals to report suspected prenatal substance use.

      8 states require healthcare professionals to test women for prenatal drug exposure if they suspect substance use.

    • Fear of Losing Social Network

      Also, many pregnant women with substance use disorders don’t tell their family or friends they are dealing with addiction because they’re worried about disappointing or embarrassing them.  They often isolate themselves, negatively affect both their mental and physical health (White, 2009).

  • How does substance use-related stigma toward pregnant women affect babies?

    Because stigma is a substantial barrier to care, it has serious implications for the health of pregnant women with substance use disorders and their babies.

    Exposure to substances during pregnancy can cause serious problems for newborns. Depending on the substance (e.g. opioids, alcohol, tobacco), infants may experience a range of health challenges such as

    • premature birth,

    • low birthweight,

    • breathing problems,

    • feeding problems,

    • vision or hearing problems,

    • abnormal facial features, and

    • longer-term developmental problems.

    Pregnant women, themselves, are also at risk for health problems, including complications during pregnancy and labor and delivery (Lamy et al, 2015), as well as the risk for maternal overdose depending on the substance.

  • How can we ensure that pregnant women with substance use disorders get the care they need?

    1. Create safe, caring, and supportive environments and relationships that are free from stigma (Stone, 2015).
    2. Eliminate blaming and shaming pregnant women with substance use disorders, as this only drives them away from the care and support they need (Thigpen et al., 2014; Krans et al., 2015)
    3. Inform women with SUD that help is available and encourage them to seek treatment (FindTreatment.gov).