This resource offers background information and tips for providers on how to use person-first language* and on which terms to avoid using to reduce stigma and negative bias when discussing addiction or substance use disorder with pregnant women and mothers. Although some language that may be considered stigmatizing is commonly used within social communities of people with substance use disorder, clinicians and others can use language that helps to destigmatize it. This document was compiled with input from 35 staff members and 42 women with lived experience in the UNC Horizons substance use disorder treatment program.
*Person-first language maintains the integrity of individuals as whole human beings by removing language that equates people to their condition or has negative connotations.1 For example, “person with a substance use disorder” has a neutral tone and distinguishes the person from his or her diagnosis.2
How to earn CME/CE credit:
- Step 1: Read all of the content below.
- Step 2: Go to the Women's Words Matter CME/CE Activity page and complete the instructions provided under Method of Participation and Request for Credit to obtain your CE certificate.
NIDAMED offers similar language guides for health care providers and the general public with preferred terms to use and avoid when talking about addiction with people with substance use disorder and their loved ones.
Although the terms “women” and “mothers” are used throughout this guide, it’s important to note that not all terms fit all people. For example, transgender and nonbinary people may prefer different terms to describe themselves and their experiences. The perspectives and needs of all people should be routinely considered in public health efforts to improve the overall health of every person and eliminate health disparities.
Stigma and Addiction: Pregnant Women and Mothers
What is stigma?
Stigma is discrimination against an identifiable group of people, place, or nation. For people with substance use disorder, stigma might include inaccurate or unfounded thoughts (e.g., people with substance use disorder are dangerous, incapable of managing treatment, or at fault for their condition). Stigma against pregnant women and mothers with substance use disorder appears in many forms, such as the use of erroneous language and terminology, delivery and belief of misinformation about substance use, punishment of substance use, and belittling of a mother’s relationship with her child.3
Where does stigma come from?
Stigma against people with substance use disorder may stem from antiquated and incorrect beliefs that addiction is a moral failing, instead of what we know it to be: a chronic, treatable brain disease from which patients can recover and continue to lead healthy lives. Women may experience stigma more often than men, as substance use is often seen to violate their gender expectations.4 Similarly, people may publicly blame and condemn pregnant women with opioid use disorder (OUD) because of a misbelief that having a substance use disorder is a choice versus a medical condition—and that they are, therefore, choosing to harm their unborn baby.5 Women themselves often internalize this stigma and feel deep shame as a result.
How does stigma affect people with substance use disorder?
- Feeling stigmatized can reduce the willingness of individuals with substance use disorder to seek care for substance use problems, prenatal needs, basic primary health, or mental health.6,7,8,9,10,11,12 They fear the potential social, legal, and employment effects if they disclose their substance use.13
- Stigmatizing views of people with substance use disorder are common; this stereotyping can lead others to feel pity, fear, anger, and a desire for social distance from people with a substance use disorder.7
- Stigmatizing language can negatively influence health care provider or professional (HCP) perceptions of people with substance use disorder, which can impact the care they provide.14
How does stigma uniquely affect pregnant women and mothers with substance use disorder?
The effects of stigma on pregnant women and mothers are wide ranging and can include poor self-image and self-esteem; defensiveness leading to damaged relationships; and feelings of shame, fear, depression, and anxiety.3 Damaged relationships may also include those with health care and social services providers. Because of stigma, pregnant and postpartum women with substance use disorder are less likely to:
Why are they less likely to seek medical care or to breastfeed?
Many women are afraid their babies could be taken away, or they could go to jail. Based on the history and known, ongoing punitive practices in many communities, pregnant women fear criminalization and/or child protective services (CPS) involvement if substance use disorder is discovered. Such fear often leads to their avoiding or skipping prenatal care visits; withholding self-report of substance use when they do obtain medical care; and reducing their willingness to access substance use disorder treatment, including medication treatment for OUD (MOUD, also known as medication-assisted treatment).3,8,17
Further, many pregnant women are concerned about receiving substance use disorder treatment because some state policies consider any substance use (including MOUD) during pregnancy as child abuse.3,18 The testimony shown in the textbox to the right is from an interview conducted with a woman who was using substances during pregnancy.
Women may be misinformed about their substance use disorder treatment options. Pregnant women reported not seeking substance use disorder treatment because they lack information on, or have misconceptions about, available treatment options.3
Women may not be knowledgeable about breastfeeding. Women in one study all reported that social stigma strongly influenced their decision whether to breastfeed while they were prescribed methadone.19 They also reported that information from HCPs was based on methadone-related stigma, rather than on evidence. Further, skipped prenatal and other medical visits limit opportunities for mothers to learn about the safety and benefits of breastfeeding. The quotation in the textbox below is from an interview conducted to determine what influences infant-feeding decisions if the mother is receiving MOUD.
“I wish that they [health care providers] would know that it’s not bad to breastfeed—that just because we’re on the medicine, it’s not bad for our child to get breast milk, you know. There’s facts. It’s not just your opinion—like, read about it. Be informed about it.” 19
Women fear being judged. The media’s depiction of people with substance use disorder is often stigmatizing, further contributing to fears of being judged by neighbors, peers, or HCPs. The woman may also judge herself most harshly of all, even before she has the chance to be judged by someone else.
“I found out that I was pregnant in the middle of a relapse, and I thought I could not keep the baby. I did not feel motivated to keep the baby. I also felt shame and mortified in trying to get prenatal or drug treatment help—I knew they would judge me. They would also judge me if I lost the pregnancy. There was no way out. The thought of walking into a hospital and saying I am using was terrifying. To tell somebody what you have been doing is scary and the hardest thing to do because you don’t know how they are going to react.” (from interview conducted by H. Jones, February 25, 2021)
How can we change stigmatizing behavior?
- When talking to people with substance use disorder, their loved ones, and your colleagues, use non-stigmatizing language that reflects an accurate, science-based understanding of substance use disorder and is consistent with your professional role. This can make mothers more comfortable so you can clarify misinformation, reduce confusion and feelings of unfair treatment, and help diminish treatment barriers.8
- Because clinicians are typically the first points of contact for a person with substance use disorder, HCPs should “take all steps necessary to reduce the potential for stigma and negative bias.”14 Learning the terms both to avoid and to use (which follows) can help.
- Use person-first language, and let individuals choose how they are described.20
- Lead stigma-reduction efforts in your practice with this anti-stigma toolkit.
What else should I keep in mind?
It is recommended that “substance use” be used to describe all substances, including alcohol and other substances, and clinicians refer to severity specifiers (e.g., mild, moderate, or severe, as defined by the DSM-5) to indicate the severity of the substance use disorder. This language also supports documentation of accurate clinical assessment and development of effective treatment plans.21 When discussing treatment plans with people with substance use disorder and their loved ones, be sure to use evidence-based language and focus on the behaviors and outcomes associated with recovery, not just treatment adherence. Avoid being judgmental if people return to substance use, which may be a sign of their substance use disorder.
Terms to avoid, terms to use, and why
Consider using these recommended terms to reduce stigma and negative bias when speaking about addiction. Please note that the words “substance” and “drug” mean the same thing and are both used in this table. Use of one term over another depends on its context.
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For illicit drugs and other substances:
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| For toxicology screen results:
For non-toxicology purposes:
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For non-toxicology purposes:
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References
- Ashford RD, Brown AM, Curtis B. "Abusing addiction": our language still isn't good enough. Alcohol Treat Q. 2019;37(2):257-272. doi: 10.1080/07347324.2018.1513777
- Botticelli MP. Memorandum to Heads of Executive Departments and Agencies: Changing Terminology Regarding Substance Use and Substance Use Disorders. Published January 9, 2017. Accessed April 4, 2021. https://obamawhitehouse.archives.gov/sites/whitehouse.gov/files/images/Memo%20-%20Changing%20Federal%20Terminology%20Regrading%20Substance%20Use%20and%20Substance%20Use%20Disorders.pdf
- Frazer Z, McConnell K, Jansson LM. Treatment for substance use disorders in pregnant women: motivators and barriers. Drug Alcohol Depend. 2019 Dec 1;205:107652. doi: 10.1016/j.drugalcdep.2019.107652
- Hecksher D, Hesse M. Women and substance use disorders. Mens Sana Monogr. 2009;7(1):50-62. doi:10.4103/0973-1229.42585
- Kennedy-Hendricks A, McGinty EE, Barry CL. Effects of competing narratives on public perceptions of opioid pain reliever addiction during pregnancy. J Health Polit Policy Law. 2016 Oct;41(5):873-916. doi: 10.1215/03616878-3632230
- Hadland SE, Park TW, Bagley SM. Stigma associated with medication treatment for young adults with opioid use disorder: a case series. Addict Sci Clin Pract. 2018;13(1):15. doi:10.1186/s13722-018-0116-2
- Yang LH, Wong LY, Grivel MM, Hasin DS. Stigma and substance use disorders: an international phenomenon. Curr Opin Psychiatry. 2017;30(5):378-388. doi:10.1097/YCO.0000000000000351
- Stone R. Pregnant women and substance use: fear, stigma, and barriers to care. Health Justice. 2015;3:2. doi:10.1186/s40352-015-0015-5
- Faherty LJ, Kranz AM, Russell-Fritch J, Patrick SW, Cantor J, Stein BD. Association of punitive and reporting state policies related to substance use in pregnancy with rates of neonatal abstinence syndrome. JAMA Netw Open. 2019;2(11):e1914078. doi:10.1001/jamanetworkopen.2019.14078
- Syvertsen JL, Toneff H, Howard H, Spadola C, Madden D, Clapp J. Conceptualizing stigma in contexts of pregnancy and opioid misuse: a qualitative study with women and healthcare providers in Ohio. Drug Alcohol Depend. March 2021. doi:10.1016/j.drugalcdep.2021.108677
- Roberts SCM, Pies C. Complex calculations: how drug use during pregnancy becomes a barrier to prenatal care. Matern Child Health J. 2011;15(3):333-341. doi:10.1007/s10995-010-0594-7
- Stengel C. The risk of being ‘too honest’: drug use, stigma and pregnancy. Health Risk Soc. 2014;16(1):36-50. doi:10.1080/13698575.2013.868408
- Saloner B, McGinty EE, Beletsky L, et al. A public health strategy for the opioid crisis. Public Health Rep. 2018;133(1_suppl):24S-34S. doi:10.1177/0033354918793627
- Ashford RD, Brown AM, McDaniel J, Curtis B. Biased labels: an experimental study of language and stigma among individuals in recovery and health professionals. Subst Use Misuse. 2019;54(8):1376-1384. doi:10.1080/10826084.2019.1581221
- Substance Abuse and Mental Health Services Administration, Center for Behavioral Health Statistics and Quality. Treatment Episode Data Set (TEDS): 2016. Admissions to and discharges from publicly funded substance use treatment. Published November 17, 2018. Accessed April 5, 2021. https://www.samhsa.gov/data/sites/default/files/2016_Treatment_Episode_Data_Set_Annual.pdf
- Demirci JR, Bogen DL, Klionsky Y. Breastfeeding and methadone therapy: the maternal experience. Subst Abus. 2015;36(2):203-8. doi: 10.1080/08897077.2014.902417
- Haycraft AL. Pregnancy and the opioid epidemic. J Psychosoc Nurs Ment Health Serv. 2018 Mar 1;56(3):19-23. doi: 10.3928/02793695-20180219-03
- Lyden J, Binswanger IA. The United States opioid epidemic. Semin Perinatol. 2019;43(3):123-131. doi:10.1053/j.semperi.2019.01.001
- McGlothen KS, Cleveland LM, Gill SL. "I'm doing the best that I can for her": infant-feeding decisions of mothers receiving medication-assisted treatment for an opioid use disorder. J Hum Lact. 2018 Aug;34(3):535-542. doi: 10.1177/0890334417745521
- Pivovarova E, Stein MD. In their own words: language preferences of individuals who use heroin. Addiction. 2019 Oct;114(10):1785-1790. doi: 10.1111/add.14699
- Kelly, JF, Saitz, R, Wakeman, S (2016). Language, substance use disorders, and policy: the need to reach consensus on an “addiction-ary”. Alcohol Treat Q. 2016;34(1), 116-123. doi: 10.1080/07347324.2016.1113103
- Olsen Y, Sharfstein JM. Confronting the stigma of opioid use disorder—and its treatment. JAMA. 2014;311(14):1393–1394. doi:10.1001/jama.2014.2147
- Kelly JF, Westerhoff CM. Does it matter how we refer to individuals with substance-related conditions? A randomized study of two commonly used terms. Int J Drug Policy. 2010 May;21(3):202-7. doi: 10.1016/j.drugpo.2009.10.010