The stigma attached to mental illness poses a formidable barrier to care. It is a social determinant of health and a key driver of population health inequities.
Nevertheless, there are signs of hope. The word stigma appeared in 33 National Institutes of Health active funding opportunity notices in 2021, up from two in 2017. Researchers now know more about which antistigma interventions are likely to be effective, such as institutional- and population-based programs that address systemic discrimination and stigma in health care systems. A study by Pescosolido and colleagues in the December JAMA Network Open found that stigma related to depression declined from 1996 to 2018. And some experts believe that the COVID-19 pandemic has created a sense of urgency, owing to an increase in rates of depression, anxiety, substance use disorders, and suicidality, that could spur further research and action.
"We are seeing a resurgence of interest in stigma," observes William Holzemer, PhD, RN, FAAN, former dean and distinguished professor in the division of nursing science at Rutgers University. Holzemer served on a National Academies of Sciences, Engineering, and Medicine (NASEM) committee that investigated ways to end discrimination against people with mental health and substance use disorders. The committee's 2016 report looked at leading strategies for reducing stigma: media campaigns aimed at dispelling myths, education to increase knowledge about disorders and treatments, contact with people who have behavioral disorders, and protests against discrimination (for example, through letter writing and Twitter campaigns). Although the report notes that educational interventions succeeded in reducing self-stigmatization, their impact on public stigma was mixed. Contact-based education interventions-which combine education and contact between people who have behavioral disorders and those who don't-have been found to be more successful than education alone, but often the effects are short lived, according to the report.
Noting the success of several long-term, national efforts within and outside the United States, the report concludes that "changing negative social norms that stigmatize people with mental and substance use disorders will require a coordinated and sustained effort" lasting two decades or longer.
LESSONS FROM THE HIV-AIDS EPIDEMIC
Perhaps the most successful U.S. antistigma effort was propelled by activists seeking treatment for HIV-AIDS. Members of the AIDS Coalition to Unleash Power, or ACT UP, launched in 1987, garnered widespread attention with a controversial protest strategy that was instrumental in pushing policymakers and the medical community to fund the development and availability of treatment. Just three years later, Congress passed the Ryan White CARE Act, which continues to fund medical care, prescription medications, and social support for more than half a million Americans living with HIV-AIDS.
Holzemer, who became a nurse just as fear of HIV was reshaping health care delivery in San Francisco, has researched the associated stigma and watched it wane over time. Initially, there was no treatment available, and when early treatment options emerged, they were burdensome. Today HIV-AIDS is managed as a chronic condition. The stigma has not been entirely erased, but "it's just totally, totally different," Holzemer says.
MEDICAL PROGRESS AND STIGMA
Bernice Pescosolido, PhD, is a distinguished professor of sociology at Indiana University Bloomington and founding director of the Indiana Consortium for Mental Health Services Research. She and her colleagues conducted the study noted previously showing a significant decline in stigma related to depression between 1996 and 2018. Their findings related to schizophrenia and alcohol-use disorder were less encouraging. The public's understanding of the causes of these conditions grew during the study period, but respondents remained averse to associating with people who had these conditions.
Pescosolido suspects the public may think most mental illnesses lack treatment opportunities, apart from antidepressants, which hit the market in 1988. "The idea that if we could just show people that mental illness is a disease like diabetes or cancer automatically stigma will fall away, well, that doesn't seem to have happened," she says.
She is particularly concerned about the public association between schizophrenia and violence. "There's only a kernel to that stereotype that's true," she says. "If you're drinking or using drugs and you're in an active psychotic episode, you're more likely to be violent. Otherwise, people with mental illness are more likely to be victims of violence rather than perpetrators."
NURSES AND STIGMA
What can nurses do to combat stigma? "I think nurses can be the allies that make the difference," Pescosolido says. "They can ensure that people with mental illness don't get shipped to psychiatry when they come to the emergency room with heart problems."
Yet, studies show nurses hold many of the same stigmatizing beliefs as the general public, especially when it comes to substance use disorders. "We treat addiction as a moral failure," notes Marie Manthey, MNA, FAAN, FRCN, president emeritus of Creative Health Care Management. The American Academy of Nursing (AAN) Living Legend can speak with authority. She has spent 43 years in recovery from alcohol use disorder and assists other nurses in recovery through Nurses Peer Support Network of Minnesota, a nonprofit she created.
Manthey and suicide researcher Judy Davidson, DNP, RN, FCCM, FAAN, have been speaking at nursing meetings and via webinars during the past year about the need for nurses to rethink their attitudes and professional practices before more nurses are lost to suicide. Davidson, a research nurse liaison at the University of California, San Diego, says the profession has policies and standards that, however well intentioned, exacerbate the problem of stigma. She is working with the AAN on a consensus paper on the topic. She says the authors of this document are especially concerned about the use of public shaming-a violation of both the Health Insurance Portability and Accountability Act and the Americans with Disabilities Act-to discipline nurses who divert medications for their own use or have substance use disorders or other mental illnesses. She wants employers and boards of nursing to develop alternatives to disciplinary actions that don't involve firing nurses and suspending their licenses when they are open to seeking treatment. "Those processes were set up at a time when we didn't know what we know now about how these actions can lead to suicide. We need to shift course," says Davidson.
Manthey recommends that schools discuss substance use disorders with prelicensure nursing students. She would also like nurses to exhibit more support to their colleagues in distress. "My clarion call is, let us get this out of moral failure and into chronic disease and begin treating people in our profession decently. When we start doing that, we're also going to start treating patients decently."
MARKET AND GRASSROOTS FORCES
While the profession and institutions debate the merits of such approaches, private sector developments are already blunting stigma. Drug company television ads have normalized all sorts of previously stigmatized conditions, and increased access to telehealth counseling and the proliferation of mental health apps are changing the landscape as well.
Pescosolido, who was also a coauthor of the NASEM report, is no longer counting on the federal government to lead the "coordinated and sustained" antistigma effort called for in the report. She sees greater promise in grassroots efforts, anchored in two of the country's strongest sectors-education and philanthropy-and she believes Indiana can be a model. The state is investing in stigma-busting Bring Change to Mind clubs in 110 high schools, and under her direction, Indiana University has piloted a program to reduce stigma about mental health issues on its campuses. Last year, the Irsay family, which owns the Indianapolis Colts and has made mental health stigma a core part of its philanthropic mission, founded Indiana University's Irsay Family Research Institute. With Pescosolido in the lead, the institute will conduct research, prepare providers to tackle stigma, and inform a stigma-related policy agenda.
"Government spending on mental health has been stingy, but we are an extraordinarily generous society," Pescosolido says. "Many people are starting to look at mental health as a worthy cause."-Nicole Fauteux