Judith Warner also moderated the second panel of the workshop, which focused on the implementation and evaluation of initiatives and campaigns to change social norms about behavioral health specifically in the United States. Patrick Corrigan, a member of the committee and distinguished professor of psychology at the Illinois Institute of Technology, conducts research on psychiatric disability and the impact of stigma on recovery and rehabilitation. He presented results of research on contact-based approaches to changing stigma and discussed the strengths and limitations of these approaches. Bruce Link is a research scientist at the New York State Psychiatric Institute and a professor of epidemiology and sociomedical sciences and psychiatry at the Mailman School of Public Health, Columbia University.1 His research focuses on the nature and consequences of stigma for people with mental illness and on the connection between mental illness and violent behavior. He shared results from a school-based intervention aiming at changing norms about mental illness.
Corrigan discussed the work he has been doing with the California Mental Health Services Authority (CalMHSA). In 2004, the voters of California passed Proposition 63, which levied a 1 percent tax on people who made more than $1 million. The money went to a special new fund for
1 Link is currently at the University of California, Riverside.
mental health services. Some of the funding was dedicated to an antistigma agenda. Corrigan conducted research on contact as an antistigma strategy through the Center for Dignity, Recovery, and Empowerment.
Corrigan explained that contact with people who have behavioral disorders changes the discussion from illness to experience. The focus is on the medium of people foremost, as opposed to just the message. People make a big difference, Corrigan said, referring to Martin Luther King Jr. in civil rights and to Clifford Beers, who in the 1900s was hospitalized for more than 2 years in Illinois for mental illness and became one of the first advocates in the mental health field.
In exploring ways to address stigma with CalMHSA, Corrigan derived a matrix composed of three processes (or interventions)—protest, education, and contact—and two vehicles for accomplishing the processes—media-based and in vivo. With regard to education, he noted, a large meta-analysis of population studies conducted in different countries showed that over time between 1990 and 2006, the public learned that schizophrenia and depression are brain diseases (Schomerus et al., 2012). He observed that education appears to be working in terms of changing factual information for people, but he asked, “What impact has that had on changing stigma?” Looking at the degree to which the public would accept a person with schizophrenia or depression as a coworker, he continued, the same meta-analysis showed over time that acceptance of a coworker with depression did not change, but that acceptance of a coworker with schizophrenia actually declined. The findings over time were the same for accepting a person with schizophrenia or a person with depression as a neighbor.
The realization that the impact of education may be limited led Corrigan’s team and CalMHSA to examine approaches involving contact. He explained that one such approach was to have people meet a man with schizoaffective disorder who has been a colleague of Corrigan’s for several years. This individual shares information about his disorder; his childhood, which was unusual; and his hospitalizations. He also shares that he has abused drugs and alcohol, has gotten into trouble with the law, and despite that has achieved: he works full time, is a peer specialist, is a playwright, and is doing quite well.
Corrigan described results of his meta-analysis of 79 studies comparing contact and education (Corrigan et al., 2012). Thirteen of the studies included in the analysis were randomized controlled trials (RCTs). Corrigan explained that outcomes were analyzed in terms of effects on attitudes and effects on behavioral intentions, and it was found that the effect sizes for attitudes and behavior were two to three times greater for contact than for education. These results were for pre-post tests. For follow-up measures, Corrigan continued the analysis and found that effect sizes for attitudes were significantly greater for contact than for education. Moreover, he said,
education had better effects than contact for children. The children were mainly adolescents, he noted, and he suggested that this result may have reflected their lower level of knowledge about mental illness due to their age and lack of experience.
Turning to the two vehicles for delivering contact (media and in vivo), Corrigan described results from the same meta-analysis. Media-based vehicles were primarily video (seeing people in a movie), while the in vivo method entailed face-to-face contact. The latter contact had significantly greater effects than the former.
The need to translate these findings to the public policy level led Corrigan and his colleagues to the TLC3 model, which represents contact that is targeted, local, credible, and continuous. He explained that targets include key power groups, such as landlords, employers, legislators, and health care professionals, and that local pertains not only to geographic area but also to programs that are developed for cities, offices, churches, synagogues, or schools. The contact, he said, must be credible (believable to the targets) and continuous (not just a one-time contrived event).
Corrigan went on to say that implementing contact programs is challenging as a government initiative because people at different levels have to be organized and mobilized. Implementing such programs also requires people with behavioral disorders “coming out of the closet,” as was done in changing people’s attitudes about the gay, lesbian, bisexual community. Corrigan noted that famous people with similar disorders, such as Rod Steiger, Patty Duke, and Mike Wallace, have come out, which has helped reduce stigma. But, he pointed out, the success of this strategy is limited by what he called the “Thurgood Marshall” effect: people compartmentalize and think Thurgood Marshall was not like other black people. So, he argued, while famous people may serve as a beacon for people to come out broadly, real change takes place when the average person comes out.
To this end, Corrigan said, the Coming Out Proud Program was developed. He explained that this program has three lessons. The first is to consider the pros and cons of disclosing, which vary by context, such as work versus one’s faith-based community. The second lesson is to know and consider safe ways to disclose, again depending on the context and the people involved. The third lesson is to consider how to tell one’s story. Corrigan noted that the program takes place in a group situation with peers and is led by facilitators with lived experience.
Corrigan reported that two RCTs of the Coming Out Proud Program have been carried out. The first was reported in the British Journal of Psychiatry by Nicholas Rüsch (2014), who is a colleague. Corrigan explained that people in the Coming Out Proud group compared with the control group showed significant improvements in believing that disclosure is beneficial, and these improvements were maintained over time.
As part of the CalMHSA initiative, Corrigan and colleagues conducted a similar study with 200 people. As an outcome, they measured self-stigma as partly being the degree to which a person applies stereotypes to him- or herself. In the Coming Out Proud group, Corrigan reported, significant reductions were found in the degree to which people apply stereotypes to themselves and the degree to which it harms them, as well as in the degree to which people believe stigma harms them and the degree to which they have resources available so they can cope with stigma in the future.
In closing, Corrigan informed the audience that the American Psychological Association recently had launched a journal called Stigma and Health, for which he serves as editor. He urged the audience members to send good research his way.
Link introduced his talk by referring to the silent suffering that lies below the bullying and isolation of youth with mental health problems. His presentation focused on the methods and results of an evaluation of a school-based intervention addressing stigma faced by youth with these problems. He explained that this was an educational intervention and reminded the audience about Corrigan’s finding that contact interventions were more effective than educational interventions, except for youth. In Link’s evaluation, the educational intervention was compared with a contact program as the standard intervention.
The target population was sixth-grade students. As preadolescents, Corrigan noted, they were young enough so their attitudes about mental illness were not firmly set, yet they were receptive to adults as models and sources of information and approval. At 11 years of age, he added, they also were old enough to be concerned with social comparison and could recognize the potential impact of negative feelings and behaviors on others.
The School-Based Intervention
Link indicated that with schools as the location for the intervention, it could be disseminated widely from Nome, Alaska, to Central Bronx, New York City, if found to be effective. Schools and teachers, he noted, are an accepted, highly regarded source of information on social values. The intervention’s curriculum, Eliminating the Stigma of Difference, was created by Kay Barkin for application in schools. The idea, Link explained, was to engage the students with photos of people like them. The instruction begins with a broad topic to make students more comfortable with such messages as, “Each person is different in some way. Mental illnesses are just another
difference.” Link noted that the curriculum was designed to engage teachers and includes a guide, classroom activities, homework assignments, and a video explanation of how to implement the curriculum. He suggested that a teacher can learn how to deliver it with relative ease, which facilitates dissemination. He then gave some examples of the content. Using discussion and photos, the teacher raises such topics as, “Do we judge people by the way they look, the clothes they wear, the way they wear their hair, their reactions to us?” Other topics include what is mental illness, what causes mental illness, teens and mental illness, facts about mental illness, and treatment for mental illness. Some specific disorders, such as bipolar disorder, major depression, attention deficit hyperactivity disorder (ADHD), and anxiety disorders, receive more detailed coverage. Link explained that emphasis is placed on the fact that stigma can happen to anyone of any age. The messages to the youth are, “Educate yourself about differences so you can understand them better and stop others from making fun of people who are different.”
As part of the curriculum, Link continued, youth were given an assignment to engage them that involved writing a paper on the types of differences discussed during the previous several days. Topics included, “Why is there stigma attached to differences?” “How can stigma be overcome?” and “How can you personally help to overcome that stigma?”
For the contact intervention, Link explained that the researchers organized in-class presentations by two college students, one male and one female, with a history of bipolar illness. They gave 10-minute presentations moderated by the teacher, and then they discussed their presentations in the class setting. Link noted that the intervention was designed based on Corrigan’s work to moderately disconfirm stereotypes of mental illness. For 2 weeks, supplemental materials were used in the classrooms as well, such as posters and bookmarks with antistigma messages. Link added that these supplemental materials also were used as a comparative condition.
Study Design and Methods
Link stated that the researchers’ objective was to evaluate the effects of the curriculum, the contact, and the supplemental materials on the youth’s knowledge and attitudes about mental illness, behaviors and behavioral intentions regarding mental illness, and help-seeking attitudes and behaviors. The study design involved 16 schools in Arlington District in Texas that were randomly assigned to one of eight conditions created by crossing the three interventions (i.e., curriculum, contact, and supplemental materials). There were two schools per condition. Measures of attitudes and behaviors were assessed in class with laptops at pre- and postintervention. Assessments took place in children’s homes at 6, 12, 18, and 24 months.
Link explained that the final sample was composed of 722 youth. Their mean age was 11.5 years; 54 percent were female; and 40 percent were Hispanic/Latino, 26 percent white, 24 percent African American, and 10 percent other races/ethnicities. Link described the multimethods approach used for measurement, which involved the following:
- an open-ended question concerning what mental illness is;
- self-reports of knowledge, attitudes, beliefs, and behaviors about mental illnesses and help seeking for such illnesses, and responses to vignettes describing mental illnesses experienced by youth (bipolar and anxiety disorders);
- implicit attitudes toward mental illnesses; and
- collateral reports from parents on both their own attitudes and their children’s help seeking.
First, Link said the supplemental printed materials had no impact on any of the outcomes, so that particular condition was treated as a no-intervention control for analysis. Table 8-1 provides an overview of the results of separate analyses of covariance in which the preintervention levels of the dependent variables were controlled. Only the significant effects (asterisks) are shown to give an overview of the findings. Slashes indicate separate measures for vignettes of two characters, Julia and David.
TABLE 8-1 Overview of Results
|Contact||Curriculum||Contact + Curriculum|
|Problem Is Mental Illness||**/*||*/*||***/*|
|Person Is Bad||*/||**/|
|Improve with Treatment||*/***||*/***|
|Social Distance (less acceptable)|
|Social Distance (more acceptable)||*||*|
SOURCE: Link (2015).
Looking across the table, Link stated that the groups exposed to the curriculum, whether alone or with the contact intervention, showed positive changes—not in every case but generally. In only one case, he noted, did the curriculum “need” to be combined with contact for effectiveness. This was in the area of attitudes and knowledge, where the curriculum had a significant effect only in combination with contact. On the other hand, Link said, when contact was the only intervention, there were not as many effects.
Based on early findings, Link suggested that antistigma interventions can be effective with children at the sixth-grade level. He said the effect sizes of the various outcomes, which ranged between .25 and .50, were not enormous but were still positive. He underscored that these results were obtained using an intervention that is fairly easy to disseminate. He emphasized that the researchers still need to learn whether effects on attitudes toward help seeking translate into effects on actual help seeking.
Link added that more findings will be emerging from this study. He explained that the researchers monitored these children’s mental health problems and knew which ones were treated. They will use the 2-year follow-up to investigate whether any of these effects persist and whether the curriculum can be widely adopted.
In final thoughts, Link shared his hope that the intervention will have lessened the effects of stigma, especially on actual help seeking. He cautioned from a population health perspective that such interventions will change norms slowly, but if they are disseminated widely and repeated in classrooms year after year, it may be possible for the effects to persist. The hope, he said, is that small effects will build over time to offer the best chance of changing norms in meaningful ways.
Link ended with a quote from Shirley Star (1955, p. 9), who conducted the first nationwide study of public attitudes toward mental illness in the United States in 1950:
I think that we must all soberly recognize that when we talk about the long-run aims of mental health education, we are talking about bringing about a veritable revolution in people’s ideas about some very fundamental questions. This kind of change can occur, and I am certainly not here today to offer councils of despair, doubt or defeat. I would only suggest that fundamental changes are slowly and painfully achieved; usually far too slowly to satisfy the people who are laboring to bring them about. Perhaps by facing squarely the enormity of the task, we will all be more proud of, or at the very least, less disappointed and disillusioned by the relatively small changes that can be achieved in any 1 year or even 5.
Beth Angell, committee member and discussant, highlighted some of the specific lessons learned through the design, implementation, and evaluation of campaigns to change behavioral health social norms in the United States. She pointed out the importance of being attuned to policy windows that may open and close quickly, as shown by the example of incorporating an antistigma initiative in Proposition 63 in California. As mentioned in earlier workshop sessions, these presenters also emphasized the importance of collaborating with communities to develop interventions that are well targeted to the intended audience and are locally appropriate. This increases the likelihood of making the interventions more feasible, acceptable, and successful. Another lesson reiterated in this panel was the importance of taking the time to accrue the evidence needed and to carefully identify and measure outcomes. Finally, Angell remarked that it is necessary to figure out how to embed antistigma interventions into universal contexts, as seen in Link’s presentation on a school-based intervention. She asked, “How do we find other ways to deliver contact interventions in a natural way and not have to stage them or contrive them?”
The discussion in this session was focused mainly on terminology used to communicate about mental illness. An audience member started the discussion by commenting that using curricula for school-age children and teens is a good idea. Karen Swartz in the Department of Psychiatry at Johns Hopkins has a major curriculum on depression that is an hour long and can be included in a health curriculum. The speaker suggested that health curricula are a fitting place for this type of information, not as an antistigma intervention but as a source of education about depressive disorder. The speaker also suggested that the term “mental illness” is too general and imprecise.
Corrigan replied that people need to avoid the trap of trying to educate everyone about neurons. Instead, he said, everyone should be educated about people, because stigma is directed at the person, not the illness. Link commented that his team’s findings were modest, but suggested that a curriculum may help children until they are older and ready for contact interventions. In addressing the point about terminology, Link added that for measurement purposes, the team tried to describe the conditions themselves. Schizophrenia was not covered because they were focusing on disorders prevalent in children that would be more relevant to them.
An audience member recalled that in an earlier presentation, the LGBT movement had been used as a reference point for success, which raised the issue of coming out. The speaker called attention to the very organized recovery communities in the drug and alcohol sector relative to the mental
health sector. He wondered whether there are ways to harness the informal networks within mental health communities to facilitate coming out. Corrigan replied that indeed there are such mental health communities, which Swarbrick had referred to in her talk about peer support specialists. The U.S. Department of Veterans Affairs (VA) has endorsed peer support specialists as a priority, and every VA facility now has these specialists. All 152 facilities will be rolling out Coming Out Proud, as Corrigan had noted in his presentation. Corrigan added that Active Minds, a college grassroots group, started with an agenda to help people identify mental illness and obtain care. So Coming Out Proud is being adapted for colleges because the issue of disclosing for college students is much different than is the case for working adults.
Susan Rogers commented that in her circles, the phrase “mental illness” has fallen out of favor, and people will instead use such terms as “mental health condition” or “mental health challenge.” She acknowledged that trend can result in watering down language to the extent that it will be impossible to know what people are talking about. For example, a national organization several years ago decided to adopt the phrase “persons in recovery” to talk about people with any kind of mental health condition. However, Rogers noted, the addiction recovery movement uses that term as well, so it is not clear language.
As a person with lived experience in recovery, Rogers said she has had more than one diagnosis. Everyone she knows with lived experience has had more than one diagnosis, and often these were wrong. A very close friend was diagnosed with schizophrenia and was given Haldol for 2 years, but then was correctly diagnosed with depression. Rogers asked Corrigan and Link, both of whom had used the phrase “mental illness” in their presentations, how they feel about that phrase and about diagnostic labels that are often wrong and meaningless. Corrigan described a number of studies conducted a decade ago that asked how people refer to those with mental illness—“consumer,” “survivor,” “patient,” etc. The consistent result across five studies was that there is no consistent term. Corrigan agreed that language is an essential issue. For example, Coming Out Proud includes an entire lesson on what terminology to use. Corrigan added that the terminology used probably varies by culture as well. At the same time, he agreed that at the level of a public message, one must address this issue. He noted that the field still talks about the stigma of mental illness rather than the stigma of mental health conditions for two reasons: mental health is not stigmatized, while mental illness is, and people understand and relate to the term “illness” more than the term “condition.”
Link also agreed with the challenges entailed in choosing acceptable terminology while using language people understand immediately. If people
are describing an event such as that involving the pilot who allegedly crashed a plane into a mountain in a suicide event, they use the term “mental illness.” But, Link said, the effect is stigmatizing, and this is an issue the field needs to address.