The Get Talking, Get Tested Campaign: A Social Sciences Critique and Recommended Improvements – Dana Greeson
HIV/AIDS has been a highly stigmatized illness since the epidemic began in the United States in the early 1980s. The “4 H’s” referred to the groups who were most associated and often blamed for the spread of the virus: homosexuals, heroin addicts, Haitians, and hemophiliacs (1). HIV has had a devastating impact on these groups and each has reacted in different ways. In recent years, with the advent of antiretroviral treatment, HIV has shifted from a death sentence to a chronic disease in high-income countries. The Office of HIV/AIDS within the Massachusetts Department of Public Health provides services such as prevention, education, counseling, testing, client services and health and support services (2). The MDPH emphasizes multicultural health and recognizes that minorities and those living in poverty face a high burden of HIV/AIDS (2). The Get Talking, Get Tested campaign through the MDPH encourages African Americans and other black residents in Massachusetts to get HIV testing and talk about it with their loved ones (3). While this campaign targets one of the highest-risk populations in the state, the message is too narrow, with certain key issues ignored. In this paper I will use principles from the social and behavioral sciences to critique the Get Talking, Get Testing Campaign (GTGTC) and present ways to improve the campaign based on these principles.
Get Talking, Get Tested
According to MDPH Commissioner John Auerbach, "this campaign encourages people to get tested, not just for their own sake, but for the sake of their family and for their community as a whole. We want people to know that testing is fast, free and confidential, and to understand that getting tested for HIV should be a regular part of their health care routine" (3).
Campaign posters state “HIV testing is fast, free and confidential.” There are three styles of posters: one with two black men, another with a black man and a black woman and a third with two black women (see Annex 1). The relationships between the pairs are ambiguous. For example, the poster with the two women can be perceived as two friends, sisters, a mother and daughter, or partners.
Why Focus on the Black Population
The African American and black populations in Massachusetts carry an inequitable burden of HIV/AIDS compared to other race ethnicities. Data from the MDPH show that 50% of recently diagnosed women and 25% of recently diagnosed men are black non-Hispanic (4). Among those living with HIV/AIDS, 41% of women and 23% of men are black (4). Aside from race, country of origin also plays a role in the HIV/AIDS disparity. From 2004 through 2006, 44% of women and 22% of men diagnosed with HIV were born outside of the U.S. (4). Different populations differ in their modes of exposure to HIV/AIDS and therefore require separate interventions. For example, drug use is the primary exposure for white women where as heterosexual sex is the primary exposure for black women (4).
The Biopsychosocial Model of Health
The first social science approach that I will use to critique the Get Talking, Get Tested campaign is the Biopsychosocial Model created by Dr. George Engel in 1977 (see Annex 2). Dr. Engel was a psychiatrist who sought to address the shortcomings of the biomedical model of health. He recognized that the gap between the fields of medicine and psychology was negatively affecting patients. Dr. Engel stated that health and disease were strongly influenced by society, culture, and psychology and that providing patients with quality care required practitioners to look beyond biology and physiology (5).
Although there are effective testing and treatment methods for HIV/AIDS that fit within the biological circle of the Biopsychosocial Model, the sociological and psychological circles require more attention. Within the U.S., there has been substantial HIV/AIDS social marketing that promotes prevention and testing. Although these campaigns have aimed to reduce HIV/AIDS stigma, it remains deeply embedded in many cultures. In this sense Positive Deviance (PD) may be an effective approach in targeting specific cultures and communities and enhancing the sociological circle of this campaign. PD is a behavior change approach based on the idea that community problems have existing solutions within the community (6). This approach takes advantage of existing community resources and solutions and often leads to more practical interventions than those that come from outside of the community (6). Using Positive Deviance to decrease HIV/AIDS stigma could work by presenting respected HIV positive community members, who are leading productive lives, to the specific cultural groups of which they are members (these people are referred to as “positive deviants”). For example, if gender inequity was an issue within a culture, a campaign could show a well-respected man in the community supporting his wife or girlfriend getting tested. This could effectively reduce stigma and decrease gender barriers to testing.
The Lazarus Effect is a phenomenon that can also be used to reduce HIV/AIDS related stigma. This refers to the idea that antiretroviral drugs (ARVs) can transform a person from nearly dead to relatively healthy and could also be applied the sociological circle of this campaign (see Annex 3). This effect received its name from the bible, where Jesus raises Lazarus from the dead, which is essentially what ARVs are doing for people living with HIV/AIDS. The Lazarus effect is perhaps the most effective type of social marketing for community members as it provides proof of the efficacy of ARVs and the benefits of being tested and taking appropriate medications. Positive Deviance and the Lazarus effect are some examples of how the sociological circle can be improved.
The psychological circle of the Biopsychosocial Model should be addressed through culturally appropriate counseling and support groups. Although the Office of HIV/AIDS provides counseling, the Get Talking, Get Tested Campaign does not mention counseling in its advertisements. This information should be more explicit for target populations. Studies have shown that fear and avoidance play a large role in why many people go unscreened for a variety of illnesses (7). Counseling has been one effective method of addressing these fears (8).
The Political Economy Approach
Although HIV was originally associated with homosexual men, prevalence among women has been steadily increasing in Massachusetts (4). As discussed above, incidence in women is higher within cultures and communities where women are marginalized. Risk factors for women are related to socioeconomic status, country of origin, religion, education level and power differentials within romantic relationships.
Political Economy provides a macro level approach to understanding and addressing these types of disparities in health. There are three key components to the Political Economy approach. The first step is to think of a health issue as the result of certain societal interactions such as those mentioned above (class, gender, etc.) (9). Next, this approach looks at health issues as being part of a trajectory of risk, which is influenced by relationship patterns in society (9). The Political Economy approach states that public health interventions must address societal relationships that contribute to the issue (9).
The Get Talking, Get Tested campaign addresses societal components of HIV/AIDS, but not some of the most important ones. The campaign recognizes that HIV/AIDS prevalence is higher for black residents than white residents in Massachusetts. Black residents make up six percent of the Massachusetts population, but account for 28 percent of residents with HIV/AIDS (3). They are 11 more likely to have HIV/AIDS than white residents (3). The campaign has been effective at targeting black communities through health care centers and advertisements in the Massachusetts cities with the highest incidence of HIV among black residents (32-61%: Boston, Springfield, Worcester, Lynn and Brockton) (3) (10).
While it is extremely important that the black community receive targeted HIV/AIDS messages, it is also important that gender inequality is addressed. Gender inequality is a relationship pattern that can contribute to a trajectory of risk for HIV/AIDS within and outside of the black community. Some of the highest-risk residents in Massachusetts are immigrant and refugee women who do not speak English, have low levels of education, are uninsured, and face substantial gender inequality within their relationships (4)
In a recent lecture, Dr. Nicole Prudent, a Haitian physician at Boston Medical Center, discussed some of the societal obstacles for young Haitian immigrant women related to HIV. She explained that Haitian women are valued most in their roles as wives and mothers (11). Many of these women have already experienced trauma when they arrive in the U.S. They have difficulty finding jobs and gaining financial independence and are unsure how to access health care. If they are in a relationship, they probably lack decision-making power. If they are not in a relationship, they are likely feeling pressure from their families. These women also come from a culture in which HIV has been highly stigmatized. Dr. Prudent explained this scenario so that we could understand all of the factors that might prohibit young Haitian women from getting tested for HIV. These women are already feeling completely overwhelmed and the possibility of being diagnosed with HIV is terrifying. If a married Haitian woman is diagnosed with HIV her husband may abuse her and/or leave her. If a single woman is diagnosed she is unlikely to fulfill the valued role of wife and mother and may be shunned by her family. While Dr. Prudent agreed that testing is absolutely necessary, she explained that it cannot be the first step in a HIV campaign. Although this example is about Haitian women, it is generalizable to other marginalized groups who are already struggling with an overwhelming amount of issues and cannot imagine facing one more challenge.
The GTGTC does not mention anything beyond the test itself. What kind of support will be provided for those who test positive? Are there examples of people from similarly marginalized groups who are better off for being tested? What kinds of treatment barriers exist for undocumented persons with HIV? These are important societal questions that would be addressed in the Political Economy Approach.
The Communications Theory
The Communications Theory is based on the communication process where the goal is for the message receiver to interpret and act based on the message (9). The first thing to consider when disseminating public health messages is whether the target population can relate to the messenger. The messenger must encode the message to have the optimal effect on the population. A major communications challenge with HIV/AIDS campaigns is that high-risk people speak a variety of languages and literacy rates are sometimes low. The GTGTC has only printed materials in English. This is a major flaw in the campaign. In the Haitian community, a respected Haitian woman, such as Dr. Prudent, might be the ideal messenger since she shares a cultural background with the target population. The GTGTC could distribute materials in various other languages depending on the venue and target population. Of course, this still leaves the issue of illiteracy in ones native language, which can be addressed through other channels such as the health radio program that Dr. Prudent does in French Creole. Another ideal channel within the Haitian community is church since the population is almost exclusively Catholic and attendance is high. This may prevent many women who cannot read from missing out on important information.
Improving the Get Talking, Get Tested Campaign
In this section of the paper I will explore improvements that can be made to the Get Talking Get Tested Campaign by applying the three social science models previously discussed. The goal of these improvements is to better reach high-risk subgroups within African American and other black communities in Massachusetts.
Improvements based on the Biopsychosocial Model of Health
I explained earlier how the GTGTC falls short of meeting the Biopsychosocial Model of Health and how other approaches, such as Positive Deviance, may be more effective in addressing the sociological and psychological circles within the model. Positive Deviance looks to solutions already present within a community and relies on respected community members to disseminate health messages. Several ideas that I will present in this section can also be applied to the Communications Theory.
Kalichman and Coley designed a study to test the idea that people are more receptive to messages delivered by someone who they perceive as similar. Factors that one may have in common with the messenger are age, race, sex, ethnicity, religion, education level and socioeconomic status. They randomly assigned 100 black women in a health clinic to watch one of three videos on HIV testing. The narrator in the first video was an African American man. An African American woman narrated the second and third videos, but the third video also included culturally relevant consequences of not getting tested such as not living long enough to raise ones children (12). Results showed that the women rated the narrator in the third video as being significantly more concerned about them, their families and their communities. Of the women who watched the third video and stated intention to be tested within two weeks, 63% followed up compared to 23% who watched the second video and none who watched the first video (12).
Although the GTGTC did not use video as a communication channel, an issue I will discuss below, I would recommend that the MDPH partner with trusted organizations within the black and immigrant communities of Massachusetts. Berlo and colleagues state that trustworthiness and expertise are the most important factors that one considers in determining whether a source is credible (13). Currently, the only emblem on GTGTC material is the one for the Massachusetts Department of Public Health. Since the state government runs the DPH, there may be issues of trust for undocumented immigrants, and black people in general, who have a history of being mistreated by the government and medical institutions. If these subgroups see that trustworthy organizations are partnered with the Department of Public Health on the HIV testing initiative they will likely be more apt to get tested, just like the women in the Kalichman and Coley study. The Multicultural AIDS Coalition, run through the African Health Initiative Boston, is an example of an organization that works specifically with the immigrant and black populations and is therefore likely to be perceived as more trustworthy.
Levy and colleagues studied the reasons for delayed HIV presentation among immigrants and found that it was associated with a lack of knowledge, secrecy, stigma and symptom specific health seeking behavior (14). Undocumented immigrants who avoid testing due to fear of deportation would likely be more apt to get tested if they could identify a trustworthy organization in partnership with the campaign. At the very least, they could seek guidance and have their concerns addressed by the organization. The Lazarus Effect could also be incorporated into campaign materials to demonstrate that diagnosis can lead to better health and quality of life. While source credibility, Positive Deviance and the Lazarus Effect address the sociological circle of the Biopsychosocial Model, the campaign should also communicate the availability of appropriate counseling services and supports to address the psychological circle.
Improvements based on the Political Economy Approach
The subgroups of the population that are most negatively affected by HIV/AIDS mirror many of the subgroups that are vulnerable to poor health outcomes in general. According to the Political Economy approach, interventions must consider various societal interactions, such as class and gender, which may put people at increased risk of various health outcomes. (9). One of the most concerning factors is that the relative risk of HIV infection is 11 for blacks compared to whites. This disparity is exacerbated among women of color who make up 83% of new HIV diagnoses among women in Massachusetts (2). People of color living with HIV/AIDS also face increased mortality compared to whites with the virus. Another trend is for immigrants to be diagnosed much later than those born in the U.S. A significantly higher percentage of immigrants are diagnosed with AIDS within two months of their HIV diagnosis (36% versus 25%) (2). These statistics show the importance of targeting not only the black population as a whole, but also immigrants and women within it.
The Political Economy approach is another example where a positive deviant within a community can set a good example. In this case, a respected male can encourage other men to respect the women in their lives, both in general and in regard to health. Similarly, respected black men can encourage their peers to come together and get tested in an effort to decrease stigma and the spread of HIV within the black community. A positive deviant woman or a group of women can strategize safe and realistic ways of gaining power and respect within their relationships, families and communities. Since contracting HIV is often a product of marginalization, increasing women’s self efficacy and power, which is certainly easier in theory than practice, should serve to decrease their vulnerability to contracting the virus and delayed testing. Campaigns that promote HIV testing, must emphasize and provide adequate support both pre and post-testing. The more marginalized a person is who is being tested, the more severe consequences s/he may face upon testing positive.
Improvements based on the Communications Theory
Since I have already addressed the importance of perceived similarity, trustworthiness and expertise in health messengers, I will focus on the channel and language components of the Communications Theory. The GTGTC material is only presented on billboards and other printed media, which may be missing the most vulnerable subgroup: immigrant women of color who do not read English. Instead, I propose that airing short commercials on specific television channels watched by these populations would be more effective in reaching this target audience. Women from the various subgroups should be consulted for their ideas and opinions throughout the creation of these commercials. Research is needed to determine the channels and times of television viewing among specific population subgroups. Next, several versions of the commercial would be piloted among subgroups to ensure cultural and linguistic appropriateness. This channel of communication would reach those who cannot read English or do not commute to work and are therefore less likely than their male counterparts to see advertisements on buses and billboards. Other communication channels to consider are beauty parlors, churches and antenatal clinics depending on the specific subgroup.
While the Get Talking, Get Tested campaign is off to a good start in that it targets high-risk populations, it does not delve deeply enough into the trauma associated with HIV testing and the cultural barriers that may inhibit someone from being tested. Applying the Biopsychosocial Model of Health to this campaign emphasizes the need for some cultures to have more positive examples of people they can relate to who have been tested and/or are HIV positive and leading productive and meaningful lives. Culturally appropriate counseling and support groups may help with the avoidant behavior associated with testing. The Political Economy approach encourages campaigns to look at the big picture in order to understand the societal barriers that people face in seeking health care. Finally, the Communications Theory stresses the importance of using appropriate messengers, language and channels in disseminating public health messages. Applying these three social science theories to the Get Talking, Get Tested Campaign could help it to impact the most vulnerable members of society through increased HIV testing and use of comprehensive HIV/AIDS services.
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