A Critique of the Federal HIV/AIDS Web-based Prevention Programs – Michaela F. George

Since HIV/AIDS was first diagnosed in the United States in the early 1980s, it has grown from an isolated outbreak to a global pandemic. The country’s overall HIV estimated prevalence in 2003 was 1,039,000-1,185,000. Of these, 417,000 persons were living with HIV, 415,000 were living with AIDS, and 252,000-312,000 (24-27%) were undiagnosed (1). Although HIV/AIDS has become even more prevalent in this country since 2003, it remains a preventable disease. Scientists and epidemiologists have been able to identify biological risk factors and health behaviors that increase HIV transmission on an individual level (2). Still, prevention methods promoted by the federal government are inadequate. In this paper, I critique specific programs promoted and supported by the federal government and contrast them with more effective state-sponsored programs. Moreover, I identify the specific flaws that make the federal programs fail, using basic social science theories to support the analysis.
This critique focuses on web-based prevention programs sponsored by the federal government. As of February 2004, nearly 204.3 million Americans had internet access (3). Given this ubiquity of availability and use, the internet is an appropriate medium for reaching a wide audience. Furthermore, the internet can be accessed in privacy; thus, accessing sensitive medical information remains private. HIV/AIDS remains a highly stigmatized disease, and therefore, being able to access accurate information without exposing one’s condition is critically important to reaching the at-risk audience. Thus, an understanding and appreciation of the ways in which individuals use the information posted on the internet is critical when designing and planning these programs and interventions (4-5). While I will not critique the accuracy or overall quality of the information posted on federally-sponsored websites (which are generally good), the manner in which this information is presented makes it less likely to impact behavior of the targeted audiences. The poor manner of presentation and insensitivity to motivation in the target audiences are among the primary reasons that federally-sponsored websites are largely ineffective in HIV/AIDS prevention.
Many of the interventions supported by the federal government attempt to prevent HIV at the individual level, but they often fail to take account of the social influences affecting an individual’s health behavior choices. Moreover, the programs the federal government supports are not culturally sensitive or informed enough to communicate effectively to their target audiences. An example is the Tips for Teens campaign (6), (discussed below). Similarly, as explained in this essay, federal websites specifically targeted to bisexual men lack proper social sensitivity. In addition to lacking credibility through social insensitivity, the federal government’s overarching theme of prevention relies on informing and promoting the intention to change, with inadequate attention to translation of the intent to actual changes in behavior. As described herein, the program titled How to Protect Yourself from AIDS is a great example of this shortcoming (7).
In the context of this essay, the term “effective” connotes a subjective measure of how well these programs reach the goal of successful prevention. The purpose of these programs is to reduce the incidence of AIDS/HIV in the United States. Therefore, measures of effectiveness must go beyond whether and how well these web-based programs deliver information and strategies for protecting HIV-negative individuals from contracting the disease. To be effective, the programs must change health behaviors—arguably a much more daunting and complex task than information dissemination. I will look at a handful of these programs to offer specific examples which illustrate why federal web-based programs are ineffective. Understanding and explaining inadequacies may be a useful step toward re-conceiving, re-designing or even dropping these programs to promote effectiveness.
Argument 1: Failing the Adolescents
The first critique of the federal government’s HIV prevention programs is that they tend to focus on the intellectual side of decision making rather than evoke an emotional response from their audience. By using strategies from the discipline of social science to frame the context, an intervention can influence individual behavior by framing the desired behavior positively (or the risky behavior negatively) to evoke emotional, not just intellectual, responses (8-9). As successful advertising conclusively demonstrates, using cultural metaphors and drawing on meaningful analogies or ideals are more successful in influencing behaviors than bombarding target audiences with “mere” facts.
The program, Tips for Teens, is an example of a program’s blatant disregard for what the sociologists call framing. This website and the official website of the CDC aimed at youth focus their prevention efforts on conveying facts and figures about HIV/AIDS. They provide statistics and graphs to prove the point that HIV/AIDS prevention practices are available and effective in preventing the spread of HIV/AIDS; that is, they convey an intellectually compelling message supporting the wisdom of protective behavior. But that is exactly the cause of their ineffectiveness. Appealing to the intellect of teenagers is precisely the wrong way to influence their behavior (10). Rebellion, disobedience, insubordination and risk-taking are the behavioral pillars of this age cohort. If a prevention program wants to be successful, then it must take account of those qualities and appeal to emotion as well as intellect. Throwing numbers and lists of reasons why abstaining from risky behaviors would be the better choice just might encourage the opposite behavior (11). Notwithstanding the risk of political fall-out, the federal government needs to change its strategy toward HIV/AIDS prevention among youth if these programs are to become effective.
Argument 2: Failing the Non-mainstream (divergent, atypical and unconventional)
The second main critique of the federal government’s HIV prevention programs is that these programs lack authenticity and a “hearable voice” when speaking directly to specific at-risk groups. For example, the CDC has a program that directly targets a specific type of individual engaging in risky sexual behavior: men who have sex with men but participate in that behavior in secret (12). The website makes generalizations about these individuals and speaks to them from a foreign/outsider standpoint. The CDC provides an objective, clinical exposition of the facts and remaining questions regarding men “on the down low”. At no point does the reader get a sense of compassion or understanding for the unbalance, confusion, and stigma that would be associated with that group of individuals. Admittedly, the concept of “on the DL” is tricky and sensitive. However, because the CDC website lacks even a hint of identification with the target group, it is unlikely to be effective in affecting behavior among the target audience. While the clinical approach avoids acceptance (which would be politically unacceptable to many) and condescension (which would be counter-productive in the DL community), the website fails the effectiveness test because sociological agnosticism lacks the power to influence.
Individuals who are associated with stigmatized behavior are more likely to take on the characteristics of that social group, even when those characteristics are negative (13). A person’s primary social network is also the primary source for learned behavior. Thus, a successful intervention must address the issues that affect the stigmatized group in order to be effective (14-15). The intervention needs to speak directly to the group in a tone/language that is accessible, understandable and sociologically acceptable.
The CDC’s attempt to influence the behavior of the “down low” population doesn’t work. First, the website defines the group: “the term is often used to describe the behavior of men who have sex with other men as well as women and who do not identify as gay or bisexual.”(12). This language suggests an outsider forcing a definition, much as a taxonomist places organisms in hierarchy based on objective attributes that emphasize differences, not commonality. To be effective, all definitions of a group used in HIV prevention should arise internally and, thus, be consistent with the target’s self identity. The CDC’s clinical approach defines these men as “on the down low” and thereby fails to motivate behavioral changes—the very thing necessary to prevent the spread of AIDS.
Second, even if we overlook that this definition is not self-proposed, the method used to reach a “covert” population is futile. By their own definition, this population chooses to resist acknowledging membership in the group in the first place. If we were to follow this line of thinking, these men define themselves as heterosexual but engage in homosexual activities. Wouldn’t the program be more successful if the CDC targeted the group with which these men choose to associate? If the CDC re-structured the campaign to speak to sexually active men, giving both heterosexual and homosexual safe-sex advice, then these “down low” men would get the information they need while maintaining their social distance from the homosexual definition. They would be able to avoid the stigma associated with homosexual behaviors, but still obtain the necessary health/prevention information. Of course, that only addresses the information side of prevention and still ignores the emotional motivation for behavior modification.
Argument 3: Misusing the Health Belief Model
The third, and perhaps most important, criticism of the federal government’s HIV/AIDS prevention campaigns is that they complacently rely on the Health Belief Model as their main intervention strategy (16). The Health Belief Model assumes a rational decision making process. The intellectual balancing of cost and benefits of decision making is fundamental to this model. Moreover, this model hinges on the assumption that an individual’s intention to do a certain action will lead to the realization of that behavior. Even the combination of more complicated and more socially integrated theories assume rational decision making process (17-18). This is obviously not the model that applies to every individual during every decision. Sure, when making a decision about which college to attend or which job offer to accept, this rational model predominates. However, when thinking about the decisions concerning health behaviors, especially sexual behavior, the assumption of rational decision making practices is not realistic. Decisions about sexual behavior are often made under the influence of temporary pressures (alcohol or social situation, for example) and in response to emotional, not rational, influences.
For example, the Department of Human and Health Services has a website (accompanied by an optional pdf brochure), entitled How to Protect Yourself from AIDS, that outlines all the components necessary for making a rational decision (7). The website is bare of any pictures, graphics, or personal touches. There is an outline consisting of subtitles and bullet points, such as “How to use a Condom.” While this is an important aspect of HIV prevention to understand, the manner in which the information is presented implies that prevention can be reduced to using a condom correctly. The real story is much more complicated than that. If the AIDS pandemic could be avoided by just knowing the facts and relying on rational judgment, then we would not be in this dire health emergency. The decision to have sex with or without a condom is seldom a rational one. Thus, the federal government’s cautious resort to a health behavior model that assumes rational decision making is doomed to fail.
Conclusion: Hope in Successful Programs
There are several very successful, government-sponsored, web-based programs aimed at prevention of HIV/AIDS; take, for example, the Massachusetts and California state programs. These programs successfully integrate social science theories and used “trusted intermediaries” to influence the behaviors of the targeted audiences and, therefore, have the potential to actually reduce HIV transmission rates within the target group(19). Furthermore, these web-based programs successfully use the internet to reach their audiences with both authority and authenticity.
The Massachusetts Department of Public Health has instituted a training program for primary care health workers to encourage techniques of prevention on the individual level (20). These prevention programs are aimed at physicians and health care workers to offer “training [which] involve[s] concepts and procedures (standards of care) related to the prevention, diagnosis, treatment, management and patient counseling for STD and for prevention of HIV infection.” Making HIV care the “standard of care” allows individually tailored care. The information presented on this website relies on a rational decision, but that is appropriate in this circumstance. This is aimed at professionals who are making a decision about how to offer care on a clinically oriented basis. Therefore, relying on the link between intention and behavior is appropriate and effective. Put another way, the Massachusetts website provides accurate, actionable prevention strategies and empowers trained health care professionals to transfer the information to their clients, employing the communication techniques which “package” the information in the way most likely to impact the professional behavior of these clinicians.
Another example of successful prevention programs is the California campaign of web-supported peer-prevention networks that focuses on safe needle exchange for IV drug users (21). Peer education and prevention programs have authenticity. Hearing someone else’s personal experience and learning from that because you can see yourself in a similar circumstance are much more effective than governmental “preaching”. Shared experience, in this example, allows current IDUs to realize their own self-efficacy (22). These IDUs can see that change is possible, and protecting themselves against HIV/AIDS is reasonable and achievable.
The existence of these successful programs makes the lack of success of federal programs even more unacceptable. There are current and successful models for HIV/AIDS prevention programs and campaigns. However, the federal government continues to ignore these lessons learned. That is unacceptable. There are models out there that work. There are only reasons of “political correctness” to defend these ineffective programs. Unfortunately, in AIDS prevention it is not just what we don’t know that can hurt us, it is also that which we cannot listen to that dooms us to ineffectiveness.
REFERENCES
1. Glynn M, et al. Estimated HIV prevalence in the United States at the end of 2003. National HIV Prevention Conference; June 12–15, 2005; Atlanta. Abstract T1-B1101
2. Since the beginning of the HIV/AIDS epidemic, there have been certain populations that have been associated with the disease. For example, men who have sex with men, intravenous drug users, sex workers were among the first groups diagnosed with HIV/AIDS. Therefore, those social stigmas associated with those groups became synonymous with the disease. This association has been an enormous barrier in the fight against AIDS. While this is not an element of my central critique, it is an important context that I want the reader to understand.
3. Nielsen//NetRatings, March 2004: www.nielsen-netratings.com
4. Reeves PM. How individuals coping with AIDS use the Internet. Health Education and Research, Theory and Practice 2001; 16:709-719.
5. Ferguson T. Health online: how to find health information, support groups and self-help communities in cyberspace. Reading, MA: Addison-Wesley, 1996.
6. Tips for Teens: http://ncadi.samhsa.gov/govpubs/PHD725/
How to protect yourself from AIDS: http://www.fda.gov/opacom/lowlit/aids.html
8. McQuail, D. McQuail’s Mass Communitcation Theory. London, England: Sage Publishing, 2000.
9. Brown JD, Steele JR, Walsh-Childers K. Sexual Teens, Sexual Media: Investigating media’s influence on adolescent sexuality. Mahwah, NJ: Lawrence Erlbaum, 2002.
10. McKenna J, Gutierrez, J, McCall K. Strategies for an effective youth counter-marketing program: recommendations from commercial marketing experts. Journal of Public Health Management and Practice 2000; 6:7-13.
Clee MA, Wicklund RA. Consumer behavior and psychological reactance. Journal of Consumer Research 1980; 6: 389-405.
On the down low: http://www.cdc.gov/hiv/topics/aa/resources/qa/downlow.htm
Akers RL, Krohn MD, Lanza-Kaduce L, Radosevich. Social Learning Ans Deviant Behavior: A Specific Test of a General Theory. American Sociological Review 1979; 44: 636-655.
14. Siegel, M Doner, L. Marketing Public Health. Sudbury, MA: Jones and Bartlett Publishers, 2004.
15. Devine PG, Plant EA, Harrison K. The Problem of “Us” versus “Them” and AIDS Stigma. American Behavioral Scientist 1999; 42:1212-1228.
16. Becker MH. The Health Belief Model and Personal Health Behavior. Thorofare, NJ: C. B. Slack, 1974.
17. Fishbein M, Guinan M. Behavioral Science and Public Health: A necessary partnership for HIV Prevention. Public Health Reports 1996; 111:5-10.
18. Fishbein M, Yzer M. Using Theory to Design Effective Health Behavior Interventions. Communication Theory 2003; 13:164-183
19. The comparison of effectiveness of the federal versus state programs is a difficult one to support. There are no research to support a causal relationship between accessing state level intervention programs and effectively staying HIV negative. However, with my background in social science research the potential effectiveness of these state programs are far beyond the potential effectiveness of the federal programs. Both because of the suitable methods used to target appropriate audiences and the use of valuable intermediaries, these state programs are designed to succeed.
20. Primary Care Prevention: http://www.mass.gov/dph/cdc/stdtcmai/stdtcmai.htm
21. Peer Education: www.satelliteexchange.org/docs/Poster_IHRA_Conf.doc
Strecher VJ, DeVellis BM, Becker MH, Rosenstock IM. The Role of Self-Efficacy in Achieving Health Behavior Change. Health Education & Behavior 1986; 13:73-92.