Reduce Stigma

Introductory Paragraph

The term “stigma” is used to represent the complex of attitudes, beliefs, behaviors, and structures which interact at different levels of society (i.e., individuals, groups, organizations, systems) and which manifest in prejudicial attitudes about and discriminatory practices against people with mental and substance use disorders. Attention to stigmatizing structures of society, such as laws and regulations, enables examination of discriminatory policies and practices which can appear to endorse negative social norms and deepen self-stigma.

Stigma often creates barriers for those who need treatment and other critical services from reaching out for assistance. This lack of understanding impacts many people in society, especially those who suffering from SUD and to those who are in early recovery. Reducing stigma and increasing understanding of substance use disorder improves the chance that people with SUD will find the assistance and support they need. Addressing stigma requires education and breaking down barriers. This is performed by changing attitudes, perceptions, and language that is used around SUD. Recent research showed that substance use is more stigmatized than obesity and smoking. To break down the barrier of stigma we need to provide education that SUD is a chronic Illness and that the approach for treatment should be the same as heart disease, diabetes, asthma, cancer or other illnesses.

Key Information

The recovery community has been instrumental in advancing the reduction of stigma, so understanding the definition of recovery is a useful foundation for understanding stigma. SAMHSA’s working definition of recovery states that recovery is “A process of change through which individuals improve their health and wellness, live a self-directed life, and strive to reach their full potential.” When a person with substance use disorder reaches out for help, he or she is often met with judgment or unhelpful responses, often resulting from stigma. SAMHSA lists health, home, purpose, and community as essential dimensions of support for a life in recovery, so it is important to reduce stigma barriers across all of these domains. Persons with mental health and substance use problems are exposed to an array of stigma components that interact to endanger their behavioral health, including stereotypes, prejudice, and discrimination. Many examples of stigma are not overt, but are more subtle. Stigma comes in the form of language choice, pity, disdain, silence, or rejection.

Studies have shown that people with substance use disorder experience labeling, shame, and rejection from family members, friends, teachers, co-workers, supervisors, and health care professionals. This stigma can get in the way of the support that people need -- especially those in early recovery. Outside stigma can become internalized, leading people to embody and adopt inaccurate beliefs about themselves due to their exposure to external stigmatizing forces. Individual factors, such as beliefs, play a large role in an individual’s decision about whether to seek treatment. According to Facing Addiction in America: The Surgeon General’s Report on Alcohol, Drugs and Health “stigma has created an added burden of shame that has made people with SUDs less likely to come forward and seek help.” Research shows that the vast majority of people do not seek treatment because of attitudinal or belief barriers, such as lack of perceived need, concerns about stigma, and doubts about efficacy.

Types of Stigma. There are five different types of stigma, and each has an impact at both personal and social levels. Understanding and having awareness of the following types of stigma can help to break down barriers and reinvent the road to recovery.

• Self-Stigma. Shame, evaluative thoughts, and stigma prevent users from seeking prevention services, testing, and treatment. Stigma also limits employment, school enrollment, housing, and access to social and safety net services.

• Courtesy stigma. This is “stigma by association” and involves public disapproval for people associating with a stigmatized group. One example is society blaming the family for an individual's substance use disorder or mental health condition. This may have a negative impact as people may distance themselves to avoid stigma.

• Public stigma is the collective public’s prejudice and discrimination toward a specific group of individuals — in this case, individuals with substance use problems. These negative perceptions cause emotional and behavioral reactivity.

• Structural stigma. These are policies or institutional actions which intentionally or unintentionally restrict the opportunities of those with substance use disorder and mental health conditions. This could include discriminatory behaviors or negative perceptions held by institutional representatives, such as those in criminal justice systems or healthcare settings. This includes both public and private sector polices that restrict opportunities of those with drug dependence.

• Multiple stigma may be referred to as “double stigma.” This is prevalent among those who have co-occurring challenges such as mental illness, substance use disorder, homelessness and poverty.

Stigma Around Treatment. Many treatment centers are more focused on profit than service to patients. This has led to a degree of stigma associated with seeking treatment. Thus, it has become necessary to increase the quality of information about treatment centers for users seeking treatment as well as for people who provide patient referrals. Education about the following help to identify the most positive treatment centers:

• Lack of Outcomes Data. The measure of substance use disorder treatment effectiveness may be more nuanced than presented by the treatment center's website. For example, if a center says it has a 90% success rate, that most likely refers to the following conditions:
  • A reduction in the frequency of substance use during drug rehab treatment
  • A reduction in the amount of the substance being used during drug rehab treatment
  • Successful sobriety for a relative period of time (i.e. self-reported sobriety among patients between 3 and 6 months after treatment)
• Unbranded Drug Rehab Websites. Some facilities have created unbranded websites to attract additional web traffic. These websites often try to appear like an independent source verifying that one rehab center may be better than another, when in reality that website was created by a rehab center.
• Drug Rehab Centers. Some claim to be experts at everything.
• Patient Brokering. This illegal practice occurs when "body brokers" make money by recruiting people for unethical and unscrupulous treatment facilities
• Rampant Urinalysis Testing and Lab Abuse. Some sober homes around the country make money by recruiting people for the intensive outpatient programs (IOPs) that take place at drug rehab centers. These centers charge millions of dollars in fees to insurance companies for drug urinalysis performed on patients in IOPs.

Stigma Reduction Strategies

Those speaking and writing about mental health and substance use should strongly consider the language which they use when describing those struggling with those issues. People-first language or person-centric language can influence whether the material produced is stigmatizing. The new edition of the Associated Press style book recommends people-first phrasing with the goal of separating the person from the disease. The Addiction Technology Transfer Center (ATTC) has specific suggestions for stigma-reducing language:

• Call it what it is: substance use disorder (or alcohol use disorder, cocaine use disorder, etc.) or substance dependence (or alcohol dependence, drug dependence, etc.).
• Use "people first" language and refer to people with substance use disorder, people with drug dependence, people with addiction.
• Avoid negative terms like addict, junkie, wino, boozer, drug fiend, and bum.

Regarding stigma specifically associated with MAT, the National Alliance for Medication Assisted Recovery recommends the following:

• Speak publicly about the productive lives led by MAT patients
• Establish contact with elected and appointed officials
• Attend community meetings
• Prepare and distribute educational material
• Participate in media interviews
• Create a unified voice to reach the public on all issues of concern to MAT patients

Stigma Concerns Specific to Pregnant People

Reducing stigma and perception surrounding pregnancy and SUDs will increase access to care. Pregnant people with SUDs may face feelings of shame and guilt on top of their challenges with childcare, social service involvement, and access to care. These difficulties are amplified by stigma. It should be noted that pregnant people with an SUD are not one uniform group in their behavior. Some are actively using, others are in recovery, and others my be engaged in harm reduction, such as medicated assisted treatment. Nonetheless, as a sub-population they face similar hardships around stigma.

Women have different experiences with SUD both biologically as well as culturally, as they are seen as caregivers and mothers. Barriers and challenges include:

• Women are at highest risk for developing SUDs during reproductive years
• Poly-substance use is common
• Unintended pregnancy rate among people with SUD is approximately 80%
• Substance use in pregnancy is connected to many complications and negative health outcomes for mother and baby
• As many as 70% of women entering treatment for substance use disorder have children and primary responsibility for children
• Family responsibilities can interfere with regular attendance in treatment sessions, including challenges with childcare
• Hesitancy to seek treatment for fear of legal action or legal issues, including child protective services
• Covid-19 made barriers to access to care more challenging
• Transportation issues
• Past trauma may impact stigma and reaching out for care

Other areas of stigma for pregnant people with SUDs include those seeking medication-assisted treatment and those with HIV or other infectious diseases. Educating providers and communities about pregnancy and substance use can assist with reducing harm and facilitate pregnant people getting access to care and services.

Relevant Research

• The National Academies of Sciences, Engineering, and Medicine published a text titled "Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change."

• This article provides a systematic review of existing research that has evaluated interventions designed to reduce stigma related to substance use disorders.

• This literature review of programs for reducing stigma found that online education programs and face-to-face education programs were equally effective in reducing personal stigma (an individual's own attitude towards other people with mental illness), but neither approach was effective in reducing self-stigma.

• Other research has shown that therapeutic interventions, such as group-based Acceptance and Commitment Therapy (ACT) and vocational counseling, produce positive outcomes for substance users suffering from self-stigma.

• This article provides an evaluation of programs that sought to intervene to reduce stigma surrounding SUDs.
  • They found that self-stigma was offset by group-based acceptance and commitment therapy.
  • Effective strategies to reduce social stigma include motivational interviewing and positive storytelling with people with SUDs.
  • Reversal of structural stigma was advanced by contact-based training and educational programs for professionals.

Impactful Federal, State, and Local Policies

• The U.S. Department of Health and Human Services has published a report titled "Best Practices and Barriers to Engaging People with Substance Use Disorders in Treatment." This guide provides stigma reducing best practices such as co-location of SUD counseling and other services with primary care. This reduces the stigma of accessing a facility identified as treating SUDs. It catches members in locations where they are more comfortable and permits improved coordination between physical and behavioral health care.

• The U.S. Department of Education funds the Higher Education Center For Alcohol, Drug Abuse, And Violence Prevention Education Development Center, Inc which provides support to all institutions of higher education in their efforts to address the problems related to alcohol and other drug use and violence.

Available Tools and Resources

The following organizations, associations, and agencies provide information on stigma, stigma prevention, or developing prevention campaigns. Some of the organizations that provide information on stigma may focus on mental health but also address substance abuse. Similarly, some of the resources on conducting prevention campaigns focus on substance use prevention rather than stigma prevention. However, the principles and processes employed by substance use prevention campaigns are applicable to stigma prevention campaigns:

• SAMHSA seeks to provide substance use and mental health services to the people most in need and to translate research in these areas more effectively and more rapidly into the general health care system. Its Addiction Technology Transfer Center (ATTC) Network is a nationwide, multidisciplinary resource for professionals in the addictions treatment and recovery services field. The ATTC Network raises awareness of evidence-based and promising treatment and recovery practices. It builds skills to prepare the workforce to deliver state-of the-art substance use treatment and recovery services and to change practice by incorporating these new skills to improve outcomes. ATTC provides a resource titled "Anti-Stigma Toolkit: Guide to Reducing Addiction-Related Stigma." It has also created a downloadable Powerpoint presentation titled, "Reducing Stigma in Pregnant & Parenting Women with Substance Use Disorder."

• SAFE Project. The "No Shame Pledge" is a campaign created to end stigma and support others in speaking up about their own disorders and to get help without judgement. Participants receive a certificate in acknowledgement of their commitment to saving lives by fighting stigma.

• National Institute on Drug Abuse (NIDA) has published “Words Matter - Preferred Language When Talking about Addiction." It provides a table of stigma-reducing language to act as a guide when talking about those with SUD and people in recovery.

• The Community Anti-Drug Coalitions Of America (CADCA). Since 1992, CADCA has been training local grassroots groups, known as community anti-drug coalitions, in effective community problem-solving strategies, teaching them how to assess their local substance use related problems and to develop a comprehensive plan to address them.

• National Alliance For The Mentally Ill (NAMI) is a nonprofit, grassroots, self-help, support, and advocacy organization of consumers, families, and friends of people with mental health problems. It provides education, supports increased research funding, and advocates for adequate health insurance, housing, rehabilitation, and jobs.

• The Centre for Addiction and Mental Health (CAMH) Addictions Program. CAMH is Canada’s largest mental health and addiction teaching hospital. CAMH combines clinical care, research, education, policy development, and health promotion to help transform the lives of people affected by mental health and substance use issues.

• The Addiction Center provides a list of proactive ways to reduce the stigma around SUD within communities.

• The Advertising Council produces, distributes, promotes, and evaluates public service communications programs. It provides information, resources, and assistance to community groups about public service campaigns.

• The Anti-Stigma Project fights stigma by raising consciousness, facilitating ongoing dialogues, searching for creative solutions, and educating the behavioral health community, including consumers, family members, providers, educators, and administrators. They offer online trainings regarding stigma reduction. The Distorted Perception's Initiative is a public education campaign that was created by the Anti-Stigma Project to provide facts and resources to help communities understand the stigma related to mental illness and substance use.

• Mental Health America formerly known as the National Mental Health Association is the country’s leading nonprofit dedicated to helping all people live mentally healthier lives. MHA represents a growing movement of Americans who promote mental wellness for the health and wellbeing of the nation – every day and in times of crisis.

• National Mental Health Consumers’ Self-Help Clearinghouse. The Clearinghouse was the first national technical assistance center founded and run by individual's diagnosed with mental health conditions. It is a peer-run resource center that fosters recovery, self-determination, and community inclusion. The Clearinghouse serves peer-run service and advocacy organizations, family members, mental health professionals, policy makers, and individuals with lived experience of a mental health condition.

• Stop Stigma Now is a campaign to counteract stigma and prejudice directed at both patients and treatment centers. They provide a resource for preferred vs. non-preferred language in their guide to using person-centric language.

• State Without Stigma. This video provides a public service announcement on reducing stigma.

• Life Unites Us uses online conversations to help promote positive messaging and reduce stigma.

Promising Practices

Maryland. "Refocus: Look Again" is a public education campaign from the Anti-Stigma Project within On Our Own of Maryland. It is designed to challenge misconceptions and assumptions associated with mental health and substance use. Their goal is to foster change through awareness and dialogue about the real and damaging impact of stigma. An example iof their online content is an anti-stigma interview with Adina Weissman titled, "Medicated Assisted Treatment and Pregnancy." They also have an online pledge to challenge perceptions, to speak out, and to become an agent of change.

Massachusetts has developed a comprehensive anti-stigma campaign at the state level titled "State Without StigMA". This resource defines stigma and provides information on how it contributes to the current epidemic. It includes personal stories of people who talk about their own experiences with stigma and how they overcame it to find help for themselves and others in a variety of settings.