Interventions
HIV/AIDS-related stigma affects self-esteem, mental health, access to care, providers’ willingness to treat people with HIV, violence, and HIV incidence. Interventions to reduce stigma are therefore crucial for improving care, quality of life, and emotional health for people living with HIV and AIDS. HIV/AIDS-related stigma has been specifically identified as a domestic policy challenge that must be addressed to reduce the number of new HIV infections, and eliminating stigma is a crucial element of global efforts (Institute of Medicine, 2001; Joint United Nations Programme on HIV/AIDS [UNAIDS], 2001; Henry J. Kaiser Family Foundation, 2002; Klein et al., 2002).
The importance of this issue is highlighted in the UNAIDS publication A Conceptual Framework and Basis for Action: HIV/AIDS Stigma and Discrimination (2002). The document describes several interventions in the international arena but laments the shortage of documented efforts to challenge HIV/AIDS-related stigma. This deficit is also noted by Brown, Trujillo, and Macintyre (2001), who wrote, “Given the magnitude of this pandemic one could hardly claim that the area of stigma reduction is well studied” (p.15).
The literature on interventions and HIV-related stigma can be divided into three categories: statutory and regulatory, policy development, and programs and services. Most of the literature deals with the legal area. Considerably less attention has been devoted to programmatic interventions, which attempt to change attitudes and behavior. However, a multifaceted approach that goes beyond legal protections is necessary to address the social climate that sometimes appears to legitimize discrimination (Klein et al., 2002).
LEGAL AND POLICY INTERVENTIONS
In the early years of the epidemic, a consensus emerged among public health officials to approach AIDS differently from other infectious diseases and sexually transmitted infections. Public health officials wanted to avoid stigma and mistreatment that could “drive the epidemic underground,” which would compromise access to care and services, deter or delay HIV testing, and undermine the effectiveness of HIV prevention efforts (Bayer, 1999; Burris, 1999). Prevention measures that were noncoercive and that respected the privacy and social rights of those who were at risk were used. Because no treatment for HIV/AIDS existed at the time, mass education, voluntary testing, and counseling were key elements in this public health strategy (Bayer, 1999; Burris, 1999).
Despite public health officials’ approach to the AIDS epidemic, their efforts did not prevent HIV/AIDS-related discrimination. People living with HIV, as well as people who are merely believed to be HIV-positive, have been fired from their jobs, evicted from their homes, and denied services. Discrimination has occurred despite legal precedents and protective legislation. It has been reported in the areas of employment, health care, insurance, and education. Ironically, some institutional policies and laws designed to protect people with HIV from stigma can help perpetuate it. For example, privacy laws assist HIV-positive people with managing stigma, but they may also contribute to the characterization of AIDS as a dirty little secret (Herek et al., 1998).
Law and legal protections are essential components of the societal response to stigma and discrimination (Klein et al., 2002). The recognition of the negative consequences of HIV/AIDS stigma, for individuals as well as for the public health, led to the enactment of statutory protections for people living with HIV disease. The confidentiality of HIV-related information, particularly HIV test results, enjoys considerable protection under State laws and the U.S. Constitution (Burris, 1999).
The 1990 Americans with Disabilities Act (ADA) expanded the reach of the Rehabilitation Act of 1973 and made discrimination on the basis of disability unlawful. In Bragdon v. Abbot (1998), the first discrimination case involving HIV infection or AIDS to reach the Supreme Court, the Court ruled that Congress intended HIV infection to be included as a disability under the ADA (Annas, 1998). HIV infection has been found to meet the definition of disability under Federal and State laws protecting the disabled from discrimination in employment, housing, government services, and public accommodations such as hotels, schools, and medical offices (Burris, 1999).
Along with legal protection from discrimination on the basis of HIV status, HIV was exempted from traditional public health practices such as contact tracing and partner notification. Although AIDS is a reportable disease in all 50 States, requirements for reporting HIV infection vary across the States. This pattern led to the coining of the term “HIV exceptionalism” to distinguish the policies that emerged in the face of the AIDS epidemic from more conventional approaches to public health threats (Bayer, 1999). Support for HIV exceptionalism has diminished in recent years as more effective therapies have been developed for HIV disease and the belief that HIV-related stigma has diminished substantially has become more widespread (Bayer, 1999; Herek, 1999). Bayer noted:
The advances of medicine have served to undermine the exceptionalism of the HIV epidemic’s first years in America. Practices uniquely informed by a commitment to privacy rights are increasingly vulnerable to challenge as despair and therapeutic impotence give way to a (perhaps premature) therapeutic triumphalism. . . . That the era of exceptionalism may be coming to a close is, thus, not the end of the story. The privacy interests of persons infected with HIV requires a basic encounter with the role and limits of medical privacy, more generally, just as the need for HIV care requires a confrontation with the broader question of justice in the American health care system (Bayer, 1999: p. 158).
For maximum impact, policy and legal interventions to prevent HIV must be integrated with interventions against HIV-related stigma and discrimination. Legal protections are essential components of the societal response to stigma and discrimination (Klein et al., 2002). Public health practitioners must be aware of the specific statutory and regulatory framework of their States so that policy and program development occurs within existing legal protections against stigma and discrimination (Klein et al., 2002).
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| Policy Development |
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Source: Klein SJ, Karchner WD, O’Connell DA. Interventions to prevent HIV-related stigma and discrimination: findings and recommendations for public health practice. J Public Health Manag Pract. 2002;8(6):44-53. |
PROGRAM AND SERVICE INTERVENTIONS
One review of the literature analyzed 21 studies from developed and developing countries in terms of the types of interventions used to decrease HIV-related stigma. Only eight of the studies were conducted in the United States (Brown et al., 2001). The studies reviewed show that stigma can be reduced through a variety of intervention strategies, including the following:
- Information. Information can be delivered by advertisements, brochures, information packs, classes, or lecture presentations. This approach frequently includes a factual description of the disease along with details on modes of transmission and methods of risk reduction.
- Counseling. Information-based approaches are often combined with counseling (e.g., support groups for people living with HIV/AIDS). This strategy provides praise and social support for positive attitudes, behavior change, and maintenance of safe behaviors. Participants receive personal support for resolving issues with spouses, partners, families, and others in a safe environment.
- Coping skills acquisition. Master imagery and group desensitization are two techniques for acquiring coping skills. In master imagery, a person is presented with a hypothetical situation in which he or she has contact with an HIV-positive person and is taught appropriate coping skills for resolving the situation. Group desensitization begins with relaxation training and then progressively exposes the individual or group to a number of situations involving people living with HIV/AIDS. Participants use the newly learned relaxation techniques to decrease tension in a hypothetical situation.
- Contact. Contact with HIV-infected or HIV-affected individuals is used alone or in combination with other strategies. Contact can create an environment in which the general population can interact with members of the stigmatized group, either directly or vicariously (e.g., through the media). The theory is that more personal contact with an HIV-positive person will demystify and dispel misinformation, generate empathy and, in turn, reduce stigma and prejudice. This contact can range from face-to-face conversations to hearing testimonials from HIV-infected or -affected persons.
The stigma-reduction interventions described above appear to work. However, most of the interventions were tested on small numbers of subjects. In addition, few studies looked at whether changes in attitudes and behaviors were sustained over time (Brown et al., 2001, 2003).
Interventions to prevent HIV-related stigma and discrimination are integral components of the comprehensive approach to HIV/AIDS described by the New York State Department of Health AIDS Institute (Klein et al., 2002). The AIDS Institute provides programs and services in applied settings, including training for clinical and nonclinical providers, consumer education, social marketing approaches for communitywide education and awareness, and support for consumer complaints.
For example, the AIDS Institute offers free training and clinical education programs that address prevention of stigma and discrimination. The programs take place at locations throughout the State. Topics include HIV/AIDS Confidentiality Law (Article 27-F), cultural diversity, domestic violence, HIV testing procedures, HIV reporting and partner notification, gender identity and expression in communities of color, and treatment education. The New York State Targeted Provider Education Demonstration Program, funded by HRSA/HAB, builds capacity in minority organizations for education and training of health and human services providers.
Another example is the promotion of consumer education, empowerment, and advocacy. The AIDS Institute promotes and funds interventions that address consumer education and skills building. In partnership with the New York City Department of Health, the AIDS Institute has funded and assisted in developing the People Living with HIV/AIDS Leadership Training Institute (LTI). The LTI promotes skills building, community leadership, and self-empowerment in an experiential environment and has trained more than 700 people living with HIV/AIDS as community leaders and resources. LTI graduates serve on community advisory boards, Ryan White Title II consortia, Title I planning councils, and HIV prevention planning groups. Participants report increased self-confidence and feelings of empowerment.
