Lisa Vandemark, study director for the Committee on the Science of Changing Behavioral Health Social Norms, introduced the final panel, which was designed to highlight successes and challenges of campaign efforts aimed at changing behavioral health social norms outside of the United States. The first panelist was Sara Evans-Lacko of the Health Service and Population Research Department, Institute of Psychiatry, King’s College London, who discussed the evaluation of England’s national Time to Change Anti-Stigma Campaign. Robert Whitley, assistant professor, Department of Psychiatry, McGill University, presented on the Opening Minds Initiative of the Mental Health Commission of Canada. Finally, Anthony Jorm, who leads the population mental health group within the Melbourne School of Population Health, joined remotely by WebEx and described what has been learned in Australia about changing behavioral health norms.
Evans-Lacko explained that the Time to Change campaign is England’s largest ever national anti-stigma campaign. First, she described the campaign itself, then presented the strategy used to evaluate it and an overview of the findings thus far. The campaign has been running since 2008 and had funding through 2015. At the time of the workshop, Evans-Lacko said it
was awaiting future funding. The interventions are run by two voluntary-sector organizations, with the Institute of Psychiatry at King’s College London as the independent evaluation partner. There were different funding sources over different periods, but the funding amounted to about £40 million, or $60 million, over the 8-year period. There also was first-year funding for baseline data collection, as well as consultation with target groups, service users, and care providers.
The campaign, Evans-Lacko explained, involves multifaceted national engagement. Social marketing and different media activity garnered attention, but there were also community-level engagement grants for local groups doing their own antistigma work and user-led empowerment initiatives at the grassroots level.
In terms of the campaign message, Evans-Lacko observed that consultation with target groups led the campaign to build awareness around the issue of mental illness in relation to discrimination. Following the campaign’s initial burst of activity, there was some increase in people agreeing that yes, they thought mental illness was common and that virtually anyone can develop a mental illness, but they did not realize their own role in discrimination and prejudice.
To get people to recognize their own expectations and prejudice, Evans-Lacko explained, the “Schizo” video was developed, shown by Bernice Pescosolido during the workshop discussed in Part I of this volume (see Chapter 2). This video was shown in cinemas across the United Kingdom and online. It looks like a movie trailer for a scary movie, Evans-Lacko said, but then switches to Stuart, who says, “I don’t know what you’re expecting, but actually I’m Stuart, I have schizophrenia,” and it shows him with his friends and family. According to Evans-Lacko, this video generated change in terms of people being less likely to associate mental illness with dangerousness and other perceptions of prejudice.
In the past few years, Evans-Lacko continued, the campaign has been moving toward trying to facilitate social contact in different ways. For example, it has used national media activity to engage people through celebrities, but it has also used local-level events to stimulate communication about mental health, with people either disclosing their own mental health problems or just engaging the public in talking about the issues or thinking about how they can support people with mental health problems.
Evans-Lacko pointed out that the evaluation had to be complex to suit the multifaceted campaign, but that an attempt was made to simplify some of the outcome indicators. Box 11-1 shows the types of methods used at the population, target group, and community levels. The
concept of stigma was operationalized in three domains: mental health knowledge, community attitudes toward mental illness, and reported and intended behaviors (i.e., problems of behavior or discrimination). Indicators were measured across different target groups on which the campaign had focused, including general practitioners, psychiatrists, teachers and schools, and community-led initiatives. Knowledge, attitude, and behavior indicators were measured at the three different levels (population, target group, community).
Knowledge, Attitudes, and Behavior
Evans-Lacko first showed results from national surveys on knowledge and behavior indicators that were measured between 2009 and 2012 (Evans-Lacko et al., 2013a, 2013c, 2014). Around the time of each of the bursts of campaign activity, the evaluation found increases in knowledge, but these increases often returned to baseline before the next burst of activity. Evans-Lacko noted that there were no sustained longitudinal improvements in knowledge, but for intended behavior, the evaluation showed
significant sustained improvement in terms of people saying they would be willing to live with someone with a mental illness in the future.
Evans-Lacko explained that attitudes were analyzed longitudinally over a 10-year period between 2003 and 2013. She showed results for two attitudinal factors: prejudice/exclusion and tolerance/support for community care. She reported that attitudes had improved gradually across both of these factors over time, but the rate of improvement for prejudice/exclusion attitudes had improved positively and significantly following the launch of the campaign in 2009.
The evaluation also examined behavior by interviewing people who were mental health service users and asking them about their experiences of discrimination across 27 different life domains during the past year (Corker et al., 2013). Evans-Lacko reported that in 2008, 91 percent of respondents reported at least one or more experiences of discrimination and that this indicator had decreased significantly to 88 percent by 2011. Also found was a significant reduction in the median negative discrimination score (from 40% in 2008 to 29% in 2011), which was calculated from the total number of domains of discrimination that people experienced.
Evans-Lacko explained that the launch of the campaign coincided roughly with the start of the Great Recession, which led to cuts in mental health and other types of social care services. She noted that various types of economic evaluations were conducted to examine the campaign’s return on investment, looking at the cost of improving people’s attitudes and intended behavior. Based on the trends before the campaign, she reported, it was estimated that even if the campaign had been about 50 percent responsible for those improvements, the cost of an improved intended behavior was at most £4 per person. She and her team also made some comparisons to contextualize the cost of the campaign relative to that of other types of public health campaigns that were going on in England and also relative to the annual cost of those conditions. They found that the cost of the Time to Change campaign was a fraction of the cost of the condition of mental illness. Table 11-1 shows the campaign’s lower cost relative to other ongoing public health campaigns targeting obesity, alcohol misuse, and stroke (Evans-Lacko et al., 2013b).
Evans-Lacko reported on a content analysis of 27 different newspapers in which articles were coded and categorized as being antistigmatizing, stigmatizing, mixed, or neutral. It was found that the total number of articles
TABLE 11-1 Comparative Cost of Public Health Programs in the United Kingdom (£)
|Campaign||Condition||Total Annual Cost of Program||Annual Cost of Condition||Campaign Cost as % of Condition Cost|
|Time to Change||Mental illness||£5 million||48.6 billion||0.01|
|Change4Life||Obesity||£25 million||20.2 billion||0.12|
|Alcohol Effects||Alcohol misuse||£6 million||15.4 billion||0.04|
|Stroke Act F.A.S.T.||Stroke||£12 million||7.0 billion||0.18|
focused on mental health had increased between 2008 and 2011. The proportion of antistigmatizing articles had increased, Evans-Lacko noted, but there had been no corresponding decrease in the proportion of stigmatizing articles since the absolute number had been increasing (Thornicroft et al., 2013). She suggested the possibility that people were still being exposed to the same amount of negative press despite the increase in the number of antistigmatizing articles.
Evans-Lacko explained that one of the contact interventions at the community level was the “living library” concept. The idea was that instead of taking a book out from the library, one could take a person out in a public area, talk to that person, and begin to break down myths or prejudices by having this direct contact. To evaluate this approach, the campaign measured people’s intended behavior following this contact, as well as their engagement in different kinds of campaign activity (i.e., going to events or pledging to support the campaign). Modest significant improvements in reducing prejudice were noted (Evans-Lacko et al., 2012).
Evans-Lacko ended with a series of observations. She noted that overall, modest but significant improvements were found to be associated with the campaign. The triangulation using different evaluation methods helped add confidence to the findings, but, she added, it would be important to continue to develop measures with which to investigate behavior change. She remarked that these types of campaigns may have both direct and indirect effects and that it is important to consider mechanisms of change
(i.e., increased openness, disclosure, awareness of social contact). She believes the evaluation findings support the use of a multifaceted strategy with attention to multiple strategies and targets by building awareness and creating “noise” through social marketing, and also by supporting empowerment and local engagement led by people with lived experience. She also noted that the evaluation added to the growing evidence base supporting the effectiveness of social contact, which can take a variety of forms. Finally, she showed a slide of one of the members of parliament in the United Kingdom who had recently come out about his own mental illness. It was just a year ago, she added, that legislation was changed in the United Kingdom to repeal the provision that prevented people with mental illness from serving in parliament and on juries.
Whitley stated that the Mental Health Commission of Canada was created by the Canadian federal government in 2007. It has secretariats in Ottawa and Calgary, with full-time staff and many programs. Whitley explained that the commission was tasked with various initiatives, including an antistigma initiative. The Opening Minds Initiative began in October 2009 and is answerable to the Board of the Mental Health Commission. Its budget is around $2 million.
In developing the antistigma initiative, Whitley continued, its creators looked at the evidence and initiatives in other areas, which included much of the work of Pat Corrigan, Bruce Link, and many others at the workshop. They discovered that there is not much evidence that public service announcements and large media campaigns are effective. Thus, Whitley reported, their approach was to identify grassroots antistigma initiatives taking place across Canada and to work with them in bringing effective programs to scale. The process involved contacting the local programs and inviting them to participate in the initiative. This process entailed evaluating these programs, and if they proved to be effective, working further with them to scale up the programs at other locations. If they were found not to be successful, the initiative would suggest modifications or their replacement with more effective programs. Thus, Whitley emphasized, the grassroots aspect of the approach was vitally important.
Whitley stated that the foundation of the initiative’s approach is local contact-based education. It was decided to target four groups that have power over the lives of people with mental illness. The first is composed of employers, managers, and the workforce—those who can refuse to employ someone with a history of mental illness or pass someone over for a promotion. The second is the media, which have the power to write stigmatizing
stories and shape public opinion. The third is youth, who as the next generation are going to be the new leaders of antistigma efforts. And the fourth is made up of health care providers. Whitley explained that the commission selected preexisting programs and local initiatives along those four groups, and some new ones were created as well.
Whitley noted that university-based researchers from different institutions were engaged to evaluate the impact of the programs individually and in the aggregate. He explained that the researchers were separate from the administrators and managers of the initiative and evaluated the programs using mixed methods. They developed purposefully built standardized instruments and administered them pre- and postintervention. They also built on many of the existing instruments used to measure social distance and stigma (e.g., by asking such questions as “How would you feel if someone with mental illness moved next door to you?” “Would you consider employing someone with mental illness?” “How likely would you be to employ someone with schizophrenia?”). The researchers also used focus groups that included people who had participated in the interventions and conducted some qualitative studies. Doing so, Whitley said, allowed them to look at the effects of the interventions and determine which programs were most effective for which outcomes (i.e., reducing stigma, reducing social distance) and which were having no effect. He commented that a by-product of this process was finding that to disseminate effective contact-based education programs, it was necessary to create a fidelity scale and distill the critical ingredients.
Targeting Youth, Health Care Providers, and the Workplace
Whitley gave a brief overview of the program evaluation process in each of the target areas. For the youth target group, more than 100 responses to requests for proposals were received from organizations conducting youth antistigma interventions. Of these, 20 were selected, and more were added as time went by. These were all programs involving some type of contact-based education. Thus far, 27 of the programs in which 10,000 youth have participated have been evaluated, and some programs have proven successful in reducing stigma by 30 percent from pre- to postintervention. Whitley added that one of the best examples that emerged is a program called Headstrong in Canada.
For the health care providers target group, Whitley said, 17 programs were selected from 130 candidates, and 17 more were added over time. The programs target students and practitioners in various disciplines including medicine, social work, clinical psychology, and occupational therapy. They also target individuals who have been practicing for 30 or 40 years. A good example, Whitley noted, is the Understanding Stigma Program in Ontario.
When targeting the workplace, Whitley continued, the initiative took a slightly different approach. In addition to contact-based education, the initiative sought to tailor existing programs and create new ones in collaboration with these organizations. According to Whitley, collaboration has been most successful with call centers, municipalities, universities, fire departments, police departments, and the Department of National Defense First Responders. He added that first responder organizations see a great deal of trauma and mental health issues. The Department of National Defense’s program, called Road to Mental Readiness, involves training trainers in the military and on the ground with two aims: to help people identify when their own mental health is worsening and teach them strategies of self-resilience, and to encourage those people to seek care when necessary and to create a climate where doing so is acceptable. Achieving these goals, Whitley noted, is particularly challenging in an environment with such a masculine culture, and the initiative emphasizes changing the culture from being ashamed for seeking help to acknowledging that it is good for those who need help to do so and saves money in the long run.
Whitley briefly reviewed lessons learned from targeting youth, health care providers, and the workplace. He expressed the view that big media campaigns are not effective at making large changes in attitudes; they may have small effects, but these effects often wear off with time. Contact-based education, he said, appears to be the key. He added that one-off sessions do not work; booster sessions are needed. Voluntary attendance also is not effective, he argued; engagement works better if it is part of formal training for the new employee or part of formal continuing medical education. He also stressed that not all contact-based education is effective. The person delivering the education has to be a good speaker, has to have affinity with the audience, and must be local. Grassroots networks and champions are needed, Whitley added. He noted that an article in the Canadian Journal of Psychiatry from October 2014 provides a more scientific representation of what the initiative has accomplished and the lessons learned (Stuart et al., 2014).
Targeting the Media
Whitley moved on to describe the Opening Minds initiatives that are targeting media, for which he serves as principal investigator of the evaluation. He observed that the news media are one of the channels through which stigma is perpetuated, particularly of late with respect to mass shootings. The evaluation approach entailed tracking media articles from 2005 to the present to see whether there has been any change in their representation of mental illness in Canada. The evaluators used software and search terms to examine coverage systematically in the 20 most popular newspapers and
did the same for television. As of April 2015, Whitley reported, they had analyzed more than 20,000 newspaper articles. They found that approximately 40 percent of stories that mentioned mental health or mental illness focused on crime and violence, 20 percent focused on recovery, and about 20 percent centered on shortages of resources or treatments. Thus, Whitley said, the public is being exposed on a regular basis to messages that people with mental illness do not recover, that they are susceptible to crime and violence, that their illness is untreatable, and that there are no services for them. These are attitudes that public surveys show are quite commonly held.
If that is the problem, Whitley asked, what is the solution? The initiative has contacted almost every journalism school in Canada to discuss the need for a sea change in the way journalists talk about mental illness. Whitley and someone local with lived experience have presented on that experience and, he said, have been very well received by these journalism schools. An online curriculum also has been developed for new journalism students, as well as media guidelines regarding what to say, language to avoid, how to think/write about suicide or schizophrenia, and how to write about mass shootings (as a tragedy or in a titillating, sensationalist way that increases stigma). In its study of the media from 2005 to the present, the initiative will be using these program efforts as nodes for examining changes that may have resulted.
Jorm focused on concepts of mental health literacy, evidence that it has dramatically improved in Australia, and reasons for the improvement. He said it is difficult to know specifically what led to the improvement, but there is evidence that some interventions contributed to the change.
Jorm explained that the concept of mental health literacy came about in the early 1990s when it was found that the Australian public was not knowledgeable about mental disorders and what action to take for their prevention or treatment. By contrast, he noted, the public was very knowledgeable about various physical illnesses and what action they could take for prevention or early intervention for these illnesses or how to provide first aid for people with injuries. He stated that the concept of mental health literacy was developed to draw attention to this gap in knowledge and skills with respect to mental disorders. He defined the concept as “knowledge and beliefs about mental disorders which aid their recognition, management, or prevention.” He stressed that mental health literacy is not about knowledge itself (e.g., about the genetics of schizophrenia), but about knowledge linked to action that benefits one’s own mental health or that of others.
Components of Mental Health Literacy
The components of mental health literacy include the ability to:
- recognize when one has a mental health problem, which can facilitate help seeking;
- recognize that certain changes that occur or may occur in someone may signal a mental disorder, and that there are things one can do in response;
- know about the professional help that is available and the types of treatment that are evidence based;
- know about effective self-help strategies;
- know how to give first aid and support to others who have mental health problems; and
- know how to prevent mental disorders.
Jorm explained further that the extent of knowledge and skills with respect to mental disorders among the Australian public was assessed through a national survey of mental health literacy in 1995, and since then there have been two other such surveys, in 2003 and 2011. He characterized the changes found over time at the population level as massive. In one example of the survey items, a vignette of a person with depression was provided. Participants were asked about a broad range of conventional and unconventional interventions for this person and asked whether they thought those interventions would be helpful. Jorm showed a graph illustrating the proportion of people who thought the interventions would be helpful. Between 1995 and 2011, he said, there were large increases in the population’s beliefs about the helpfulness of psychologists, antidepressants, and psychotherapy. Belief in dealing with the issue by oneself declined dramatically. Jorm remarked that he had provided only a few examples but that this was the general tenor of the findings, which led to the question of why these improvements had occurred.
Mental Health Literacy Interventions
Jorm explained that it was difficult to attribute the change to any one intervention or set of interventions because so many activities were ongoing to improve mental health literacy. But, he said, one specific action that stood out was making mental health literacy a specific goal in national and state policies. He asserted that such policy support is important for sustaining action. He went on to describe some of the specific interventions that were carried out as part of a broad package of planned and unplanned action that led to improvements in mental health literacy.
One of the largest planned interventions, Jorm said, was Beyond Blue, a national depression initiative, which is now called the National Depression and Anxiety Initiative. He emphasized that this was not a campaign, but a nonprofit organization with a mission to address public action focused on depression and anxiety. He explained that Beyond Blue delivers its messages through a broad range of activities and interventions, including media advertising, sponsorship of events, community education forums, training of mentors in workplaces, and dissemination of web and print information.
According to Jorm, Beyond Blue had clearly been a contributing factor to the improvements seen in mental health literacy. Initially, the federal government supported it financially, and some of the states and territories supported it as well, but not all. That was an advantage for researchers, Jorm said, because it provided control groups. Comparing recognition of depression and beliefs about treatment in high-activity and low-activity states showed that Beyond Blue did appear to have an influence on the improvements in mental health literacy.
Jorm described another planned intervention, Mental Health First Aid training. He shared that he had a personal interest in this program because his wife started it. Since 2000, it has been disseminated widely in Australia and now has spread to many countries. Jorm reported that a Swedish group’s recent meta-analysis of trials of Mental Health First Aid showed medium effect sizes for knowledge and greater than small effect sizes for attitudes and behavior, which appeared to be sustained at least 6 months after the training. Jorm stressed that Mental Health First Aid addresses the important issue of sustainability because people pay for the training, just as they pay for conventional first aid training from the Red Cross and other organizations, which decreases reliance on government funding.
Jorm also mentioned the widely disseminated Mind Matters Program for high schools, a curriculum package that teachers can elect to incorporate in their lessons. For example, if they are teaching an English lesson, they can incorporate material about mental health.
Jorm continued by explaining that Australian Rotary Clubs formed an organization called Australian Rotary Health that took mental illness as its major focus. In this initiative, rotary clubs run community forums across the country for which they hire a hall and invite the mayor, the local member of parliament, and prominent and ordinary citizens to hear a person with a mental health condition and a provider of mental health services speak. According to Jorm, very large numbers of people across the country have been engaged.
The last planned intervention that Jorm mentioned was Mind Frame, which focuses on responsible media reporting of suicide. Australia has national guidelines on reporting of suicide, which are now used in the
training of journalists and have shown an impact. Any media reporting of suicide in Australia now includes sources for help.
In his final comments, Jorm said that, despite increased uptake of mental health services, the mental health of the public had not improved. In his opinion, this has been seen as well in the United States, Canada, and the United Kingdom. He added that the focus of interventions to improve mental health literacy had been largely on reducing the treatment gap, but that for the next frontier, greater emphasis was needed on empowering the community to take preventive action.
From his perspective as a member of the committee, Pat Corrigan summarized some of the lessons learned from the session’s three presentations. One of the common themes, he said, was the multifaceted approaches that each country had used at the national, community, and individual levels. He also said he was struck by how labor and cost intensive this kind of process can be—for example, examining attitudes over 10 years. He was impressed by the creative ways in which the initiatives described went about testing their questions, noting in particular the analysis of the cost of the campaign to change mental health stigma in the United Kingdom compared with the cost for campaigns on other health conditions, while using as a denominator the cost of the conditions themselves. He applauded Canada’s strong grassroots approach for evaluating and strengthening existing efforts. He also cited Australia’s population research approach to assessing change in social norms as a result of multiple planned and unplanned activities stemming from a specific goal in national and state policies to build mental health literacy.
One of the first questions from the audience was about the unexpected results of these initiatives and what was then done differently. Evans-Lacko replied by stating that one somewhat surprising result found in the United Kingdom was related to different types of attitudes and associated effects. For example, she said, some attitudes were much more associated with increases in accessing treatment, and others with decreases. She elaborated that attitudes around recovery and feeling comfortable talking to someone with a mental health problem were associated with greater likelihood of accessing services and being more open about these issues. However, associations between some attitudes around blame and responsibility and help seeking were not as clear. Analysis of the data is ongoing to clarify these differences in results. Whitley commented that one of the surprises in Canada was the variability in the quality of contact-based education. One lesson learned, he said, is that it is important to select people who are in good recovery, who are good speakers, and who are credible and local, as
Corrigan had noted in his earlier presentation. Another surprise was how the police, the Department of National Defense, and the first responders had responded so enthusiastically to requests to work with them.
Shim asked Whitley whether journalism curriculum booklets like that he had described existed to guide reporting on substance use disorders, or if that topic was included in the Opening Minds guide. Whitley replied that there was very little in that booklet on substance use and that there was no separate one on that topic in Canada that he knew of. Neither Jorm nor Palpant Shimkets was familiar with guides for substance use disorder reporting in Australia or the United States.
An audience member commented that media guidelines are important, but they have not been working for suicide, and methods of suicide continue to be reported because of the monetary pressure to be sensationalist. Whitley replied that the actions being taken need to be conceptualized as a slow, incremental process, and that things can change by degrees. For example, the CBC in Canada (the equivalent of NPR or public television in the United States) now has a policy that prohibits reporting the method of a suicide. Susan Rogers added that an organization of survivors of suicide attempts—the American Association of Suicidology—has created a division led by a survivor of an attempt that has issued a number of guidelines on reporting suicide. She said there is a growing movement among survivors of suicide attempts to fight discrimination and prejudice and have the press commit to reporting appropriately when someone does die by suicide. Palpant Shimkets ended the discussion by emphasizing the importance of holding newspapers and journalists to standards of reporting, and when they are seen to be stepping out of line, exposing violations.
David Wegman, chair of the Committee on the Science of Changing Behavioral Health Social Norms, closed the workshop by summarizing a number of key points made by presenters that stood out for him. The first was the critical importance of a multidimensional approach. While singular approaches may have some value, they are ultimately not going to be the solution. Wegman added that multidimensional approaches need to suit unique contexts, cultures, and challenges, so they will differ across various efforts.
Second, Wegman cited the critical importance of evaluation. He noted in particular the idea that evaluation needs to be built into funding from the outset and that projects should not be funded if they are not going to be evaluated.
Wegman’s third point was how central lived experience is to this particular arena and how it must be represented at the table in order to validate
the work being done. Everyone comes with biases, he said, and some of those biases need to be challenged daily by those who are living or have lived the experience of the problem being addressed.
Fourth, Wegman wanted to reiterate because, he said, it cannot be said enough times, that cultural change is slow. He said he was struck by the 10- and 15-year programs in other countries that had been described, although, he acknowledged, it is difficult for initiatives in the United States to be funded for longer than 1 year.
Finally, Wegman emphasized that these kinds of programs require long-term commitments and that it is essential to develop models that permit and support such commitments. Sustainability is threatened, he said, without the same long-term commitments to ongoing evaluation of individual components and larger initiatives. He stressed that it is possible to build sustainability into whatever system is found to make a difference in the lives of people who are facing these challenges.