Joanne Silberner introduced the last panel of the workshop, which focused on media and communication campaign strategies used to improve social norms, beliefs, and attitudes in health-related arenas in which negative social norms, chronicity, and behavior change are relevant. Joan Austin, professor emeritus, Indiana University, addressed stigma and negative attitudes toward epilepsy and efforts to change them. Janet Turan, associate professor of public health, University of Alabama at Birmingham, presented her research on HIV-related stigma in different settings, globally and in the United States. Kay Cofrancesco, who was scheduled to speak on the stigma of lung cancer, was unable to attend.
Attitudes and Beliefs
Austin introduced herself as a psychiatric mental health nurse who works with children who are trying to decide whether to tell their friends they have epilepsy. She began her presentation by providing background on the scope of the problem. Gallup Polls carried out every 5 years from the 1950s to 1980s showed improvement in attitudes toward epilepsy (Caveness and Gallup, 1980). The last survey was done in 1987 and although it showed better awareness, two-thirds of the respondents reported that they would put something in the mouth of a person having a seizure; one-third continued to think less of people with epilepsy and their
families; and one-sixth thought they could identify people with epilepsy just by looking at them (LaMartina, 1989).
It was not until the early 2000s, Austin said, that the field began to understand the dimensions of attitudes related to epilepsy, and through use of the Centers for Disease Control and Prevention’s instrument Attitudes and Beliefs about Living with Epilepsy, four dimensions were examined. The first dimension, Negative Stereotypes, has such items as “not as smart” and “should not marry.” Second, the Risk and Safety Concerns dimension has such items as “do not let your child ride in the car if the driver has epilepsy” or “you would not hire a babysitter with epilepsy.” The third dimension, Work and Role Expectations, has such items as people with epilepsy are “not able to cope with everyday life” and “not as successful at work as others.” The fourth dimension, Personal Fear and Social Avoidance, has items assessing whether people “feel nervous when they’re around people with epilepsy” or “would not date a person with epilepsy.”
Austin pointed out that surveys with nationally representative samples have shown that people are least likely to agree now with those negative stereotypes, but they are most likely to agree with risk and safety concerns. There is moderate agreement on work and role expectations, with some expectation that individuals with epilepsy are not going to do as well on the job and some discomfort around people with epilepsy (Diiorio et al., 2004). Research is currently ongoing to examine how these attitudes and beliefs may have changed between 2005 and 2013.
Since 2000, Austin reported, the Epilepsy Foundation has conducted yearly multifaceted campaigns to increase awareness and public education about epilepsy. Because of limited funds coming only from donations, it has targeted groups with the lowest awareness, the most negative perceptions, or the most negative attitudes. The foundation has worked with teens, tweens, and young adults and with ethnic minority groups, including African Americans, Hispanic Americans, and Asian Americans. Austin noted that the methods used have varied but have included mass media, such as DVD, the Internet, print, radio, social media, and television, as well as celebrity endorsement (Price et al., 2015).
Entitled to Respect Campaign
Austin identified the most successful campaign as one conducted in 2001 to 2004 with the theme of Entitled to Respect. The main goals, she said, were to increase teens’ awareness of epilepsy and to increase self-esteem among teens with epilepsy. The campaign started with teens ages 13 to 18 and then was extended to tweens and then African American youth under the theme of Get the Word Out. Austin explained that one of the reasons for targeting teens was that, prior to the launch, a survey conducted
nationwide among approximately 20,000 teens found that two-thirds knew either nothing or very little about epilepsy. Five different conditions were compared (asthma, breast cancer, diabetes, HIV, Parkinson’s) against epilepsy, and knowledge about epilepsy was the lowest at 8 percent. Two-thirds of respondents did not know what to do if someone had a seizure. Austin asserted that, given that epilepsy is most prevalent among young people and those over 65, the fact that most young people did not know what to do when someone is having a seizure was not a good thing (especially because children with epilepsy may have their first seizure at school). She reported further that half of respondents were not sure whether epilepsy is contagious, and less than one-third would date a person with epilepsy (Austin et al., 2002).
The campaign’s message, Austin said, was that youth with epilepsy are entitled to respect just like everyone else. She characterized this as an awareness and educational campaign, focused primarily on outreach through teen media channels. With support from the popular music group NSYNC, the campaign used “E2R” public-service radio messages with music from NSYNC’s recently released CD so teens could hear the music they liked with a message about epilepsy. The campaign’s webpage was linked to NSYNC’s website and six other sites that were popular with teens, and television, posters, brochures, and contests also were used.
A postcampaign survey in 2007 showed overall improvement, Austin reported, with Latino and Hispanic youth improving the most. The lack of awareness decreased from two-thirds to less than one-fourth; knowledge that epilepsy was not contagious increased from one-half to two-thirds; and teens were more informed that people with epilepsy could work and drive. Austin noted that one of the areas that did not improve was uncertainty and misinformation as to what to do if someone has a seizure. Youth with epilepsy were still seen by their peers as being less likely to be popular.
Regular Education and Outreach
Austin added that the Epilepsy Foundation also has ongoing efforts to educate specific groups of people who have regular contact with individuals with epilepsy and those who need to know how to handle seizures. These targeted groups include child and adult daycare workers, first responders, law enforcement personnel, middle and high school students, parents of children with epilepsy, and school nurses. Austin has been most involved in the effort for school nurses. She reported that regular evaluations have shown that school nurses have shown increased confidence in recognizing and handling seizures after the training (Austin et al., 2002).
Progress in the Field and Challenges
According to Austin, a major event in the epilepsy field was the 2012 release of an Institute of Medicine (IOM) report on the public health dimensions of epilepsy (Institute of Medicine, 2012). She asserted that the study’s recommendations had major impacts on the field. One recommendation was to inform the media to improve awareness and eliminate stigma by promoting more accurate storylines and depictions of epilepsy. A second was to coordinate public awareness efforts to develop shared messages, an area in which Austin said the IOM report had a large impact. There are about 30 voluntary organizations involved in various aspects of epilepsy. In the last year and for the first time, Austin said, they have all been working together. She added that because of all of the inaccurate information among the public, the IOM committee developed eight key messages with accurate information about epilepsy for use by health educators.
Austin also discussed the challenges that persist in the field. First, epilepsy is a spectrum disorder with a wide range of severity, seizure types, and co-occurring conditions. Two out of three people with epilepsy seizures are very well controlled and are able to function well. Others struggle with epilepsy, having frequent seizures that are not controlled and having tried every medication and every treatment. Austin explained that, given this wide spectrum, messaging is very complicated. The objectives can vary, she said, and messages can appear to conflict depending on the subgroups being targeted.
Another issue Austin noted is that campaigns often are not evaluated for change in follow-up surveys because of cost. In addition, she said, evaluations focus mainly on process outcomes, such as campaign reach (Price et al., 2015).
An additional challenge Austin highlighted concerns two studies conducted 25 years apart, in 1981 and 2006 (Collins et al., 2007). Findings showed that about one-half of the respondents believed that violence is possible or likely during a seizure. The results were unsettling, Austin said, because respondents were medical students, law students, and people with epilepsy. The items included such questions as how likely respondents thought certain violent acts were to be caused by seizures. Austin said there clearly is a great deal of work ahead. Despite years of educational campaigns about proper response to seizure, she noted, the field continues to be challenged by common myths that persist, such as putting something in someone’s mouth during a seizure and calling an ambulance for the person. She said the Centers for Disease Control and Prevention is currently considering new communication methods, and she emphasized the need for research in the field to help identify appropriate messages.
Turan spoke about efforts to change and reduce HIV-related stigma and discrimination through face-to-face, hands-on, grassroots approaches in health care settings. She noted that people who live with stigmatized health conditions often have frequent contact with health care providers, and a large body of literature suggests that fears of stigma and discrimination and of lack of confidentiality can discourage people from accepting testing and diagnosis for their condition and linking to the services they need.
Turan showed a slide of a framework developed by Laura Nyblade of the Research Triangle Institute that summarizes some of the key lessons learned in the HIV field on the components of effective stigma reduction interventions. The first is to address the immediately actionable drivers of stigma and discrimination, such as lack of awareness, values that cause shame and blame, and fears and misconceptions (e.g., about how HIV is transmitted). The second is putting affected groups at the center of the response by developing and strengthening networks of people living with the condition, empowering them and strengthening their capacity, and addressing the issue of internalized or self-stigma. The third is creating partnerships between the affected groups and opinion leaders, service providers, or policy makers. According to Turan, the most successful interventions include all three components.
A Health Setting-Based Stigma Reduction Intervention in Five African Countries
Turan then described an intervention developed in sub-Saharan Africa that was adapted for a setting in the United States. The principal investigator of the study was William Holzemer, a committee member (see Uys et al., 2009, for more information). The intervention has three important components, which correspond to those described above.
The first component, Turan said, is sharing information. During workshops, she reported, results of local data on HIV-related stigma are shared, and general information about how stigma impacts the lives of people living with HIV is provided. The second component involves increasing contact by bringing together the affected group and a group of health workers to plan stigma reduction activities. The third component is improving coping through empowerment. People who are living with HIV are involved in an activity in which they can address stigma directly, not just accept it, live with it, or cope with it.
Being inspired by this intervention and after discussing it with Holzemer, Turan, and colleagues decided to adapt the intervention for their setting
in Birmingham, Alabama. She noted that other pilots were being conducted to see how well the intervention would work in the United States. In Birmingham, local data were collected and analyzed initially to learn the current status of stigma and discrimination around HIV. Turan and colleagues also examined data on at-risk populations, and a large survey of public health and primary health care workers and focus groups with people living with HIV were conducted in the state.
Turan said she did not have time to describe all the modifications made to the original workshop model, but the workshop did have to be shortened to accommodate the busy schedules of the health workers and consumers. Importantly, a module on other intersecting stigmas and discrimination was added, addressing racism, stigma attached to poverty, and discrimination according to sexual orientation. Turan noted that the workshop also was adapted to include the development of stigma reduction projects that could reach the larger population of health workers in the region.
As implemented in Birmingham, Turan reported, the workshop was attended by health workers and consumers and was facilitated by a health worker (or social worker) and a consumer. It was conducted at the University of Alabama at Birmingham School of Public Health for a full day, followed by a half-day 2 weeks later. Topics addressed included understanding stigma, different intersecting stigmas, outcomes of stigma, coping with stigma, why stigma is difficult to change, stigma reduction strategies, and the design of a tool to reach public health and primary health care workers. According to Turan, a powerful part of the workshop was when people worked in pairs and told each other a story about when they experienced stigma and discrimination. Everyone, she said, had such a story to share.
In designing a tool to reach a wider group of public health and primary health care workers in the state, Turan said, attendees worked in small groups of health workers and consumers. Two iterations of the workshop have been conducted, the first with 13 participants and the second with 23. The health workers were from local and state health departments, local AIDS service organizations, and university clinics. Turan added that the workshops were evaluated with pre and post questionnaires.
Preliminary Results of the Birmingham Pilot
In terms of the demographics of attendees, Turan reported, ages ranged from 23 to 70, 73 percent were African American/black, 27 percent were Caucasian/white, and 67 percent were women. She noted that the definition of health workers was broad and included physicians, nurses, health educators, social workers, research coordinators and staff, administrative support personnel, and radiology technicians. She explained that this array of health workers was included because it was recognized that much of the
stigma and discrimination faced in health care settings does not necessarily come from nurses or doctors but from receptionists, record keepers, or lab personnel. She noted that clients often reported stigma from administrative staff or receptionists.
Turan added that the sample size was very small for this pilot, but it was found to be feasible to recruit and engage both health workers and consumers (people living with HIV). Fully 87 percent of consumers and 89 percent of health workers rated their workshop experience as “excellent.” According to Turan, preworkshop and postworkshop comparisons showed that consumers’ scores on negative self-image, disclosure concerns, and enacted stigma tended to be lower in the post-test than in the pretest. However, she said their concern about public attitudes was higher. She suggested that perhaps they were more aware of some of the public attitudes after the workshop. Among providers, empathy scores tended to be higher in the post-test than in the pretest. Turan said these were promising initial results that could be taken further.1
Turan added that the ideas for reducing stigma in health care settings that emerged from the workshops focused on reaching medical personnel early, when they are in training, through interactive workshops, TED talks, or roleplay experiences. She closed by saying that combining informational, contact, and empowerment strategies holds promise for use in other areas involving stigma and discrimination that hinder the psychological well-being, health care utilization, and health outcomes of people living with the stigmatized conditions.
The discussant of this workshop session was William Holzemer, committee member. He noted first that the two presentations had brought out issues related to internalized stigma, whereas previous sessions had focused more on external, socially based, and structural stigma. Effecting change in social norms at these external, social, and structural levels may still be elusive in communities, he said, but the presentations had showed how it is possible to reach out to people and help them address how they react to the stigma themselves in terms of self-worth and self-care. He remarked that an important remaining frontier is to confront the large number of people who are living with HIV who do not receive the testing, care, and medications they need. Similarly, he asserted, much more work needs to be done to overcome the challenges in achieving real behavior change even though attitudes may change in desired directions.
Topics discussed at the end of this panel focused primarily on intersecting stigma. Others included approaches to promoting positive behaviors and the postcampaign survey of the Entitled to Respect campaign. The session ended with brief final remarks from the chair of the Committee on the Science of Changing Behavioral Health Social Norms.
In response to a question about how to address intersecting stigma in primary care, Turan replied that this is currently a cutting-edge area of intervention and research and is extremely complex. For example, if a black woman living with HIV who is poor and is also a lesbian presents in a primary care clinic, how does one understand her experience, and how do those different identities contribute to that experience? Turan noted that the University of Alabama has a study of this issue under way using mixed methods. A major focus is in-depth qualitative interviews with such women to try to understand how this experience of having multiple identities affects them and their health, well-being, and service utilization. Quantitative measures of poverty, stigma, racism, and homophobia are also being used to examine how these factors are associated with outcomes.
Austin said she deals with some populations in which mental health issues are very prominent in people with epilepsy, especially mood disorders in adults and attention deficit disorder and autism spectrum disorder in children. Families often will say that the seizures are not the problem, she explained, but rather the behavioral issues they are dealing with. Intervention starts with where the families’ issues are, she said.
Pescosolido remarked that conducting research on intersecting stigma is very challenging because every time a factor is added, whether in qualitative, experimental, or social survey research, there must be a corresponding increase in the number of cases, which makes studies more difficult to carry out. The other issue, she said, is that people themselves may have difficulty reporting accurately on their experiences of intersecting stigma because they may not be able to differentiate the effects of the stigma arising from each source.
An audience member commented that research is lacking at the national level concerning stigma itself, let alone multiple intersecting types. This speaker’s national surveys have included items about attitudes toward psychiatric medications and mental health. The surveys have found very few differences between Caucasians and African Americans, except with respect to medical research, a topic that elicited skepticism and evoked the history and trajectory of Tuskegee. People who had or saw serious problems with mental health wanted treatment regardless of their race. This same speaker also said that research on attention deficit hyperactivity
disorder and African American parents suggests there is certainly a stigma, but how it compares with that experienced by other groups is unknown. National surveys do not include large enough numbers of participants in different groups for comparison, this speaker noted, especially in panethnic communities.
Turan added that the study her group is conducting on this topic is within the Women’s Interagency HIV study, which includes a large national cohort of women living with HIV and a large representation of minorities. So at least for women, she said, there may be opportunities to examine some of these issues in a large dataset.
Audience member Vanessa Wellbery commented that she has learned from people working in the field of domestic violence that introducing the subject of intersecting mental illness further stigmatizes women who are suffering from domestic violence. Pescosolido responded that she sees this a great deal in the mental health community. At Indiana University, she is conducting a college toolbox project that is sponsored by Bring Change to Mind. The idea is to address differences in general, with mental illness being one of the prominent differences portrayed.
Promoting Positive Behaviors
The discussion of this topic started with a question about whether there is any research on the efficacy of promoting positive behaviors instead of discouraging negative ones. William Holzemer replied first, saying that Kate Lorig from Stanford had published a great deal on self-management, which really is an orchestrated training program on total health management with an emphasis on wellness, even for people with diagnosed chronic illnesses. Turan commented that in the HIV/AIDS arena, positive role models are now being used, with greater focus on such topics as coping, resilience, and how many people are doing well living with HIV/AIDS. From the research point of view, effort is focusing on how to measure such indicators as resilience, coping, social support, and other factors that help people deal with these conditions. Austin agreed, noting that her group’s interventions with people with epilepsy are more self-management oriented, focusing on their whole lives and using some of the material from Lorig’s research.
Follow-up Question on the Postcampaign Survey of the Entitled to Respect Campaign
Austin was asked to provide more information about the rationale and methods used for the 2007 survey conducted to follow up on the Entitled to Respect campaign. She replied that it was a Harris Interactive survey with a stratified sample. She added that no follow up had been carried out since
then, which she finds unfortunate. She added that this is another reason why it is good news that all of the organizations focused on epilepsy are coming together now to coordinate planning and programs, which she said will also help support and sustain communication initiatives.
Austin was asked about the different approaches that have been used for messaging and which ones may be best, especially with lower resource levels. She replied that the focus is more on depth than on breadth. Part of the issue is money, but her group also is targeting those most at risk for poor care and is getting involved more with the community, churches, and health care providers.
The last session of the day was to be a panel of committee members reflecting on the lessons learned during the workshop. However, because all of the prior discussions had been rich and the end of the day was near, it was decided that the workshop would be adjourned following brief remarks from David Wegman, chair of the Committee on the Science of Changing Behavioral Health Social Norms. Wegman remarked that the day’s presentations and discussions about the basic and applied science behind communication campaigns, as well as the implementation and evaluation of campaigns in various areas of public health, had indeed been very complex and thought provoking. He noted that it is apparent how challenging it would be to synthesize the multilayered evidence on planning communication strategies for changing social norms in behavioral health. He closed by saying that the April 2015 workshop would focus on applications of the science directly to campaigns and approaches in behavioral health.