Stigma and access to care
The literature devoted to stigma and access to care falls roughly into three categories. Most of the literature deals with barriers to care that HIV-positive individuals encounter across the continuum from HIV diagnosis to end of life. The next largest category of studies documents the reluctance of health care providers to treat individuals with HIV infection. Finally, a few studies cover the stigma experienced by providers of ancillary and support services to people living with HIV/AIDS.
INDIVIDUALS
HIV/AIDS-related stigma affects issues related to HIV testing including delays in testing, the effect of delay on further transmission of HIV, and individuals’ responses to testing positive (Chesney and Smith, 1999). Early detection of HIV infection is important. Knowledge of one’s HIV seropositivity can lead to earlier treatment and improved outcomes (Herek, 1990). Knowledge of seropositivity also can lead to changes in risk behaviors that can reduce or eliminate the risk of HIV transmission.
A Kaiser Health Poll report (2000) suggested that fear of being stigmatized by HIV/AIDS has some relationship to people’s decisions about getting tested for HIV. One-third of survey respondents said that if they were tested for HIV, they would be “very” or “somewhat” concerned that people would think less of them if they discovered that they had been tested. In addition, 8 percent of people who had never been tested for HIV said that worries about confidentiality played a part in their decision not to have the test.
Studies provide evidence that stigma is associated with delays in HIV testing among individuals who are at high risk of being infected with HIV (Myers et al., 1993; Stall et al., 1996). In a study of gay and bisexual men who were unaware of their HIV status, two-thirds of the participants expressed a fear of discrimination against people with HIV and said it was a reason for not getting tested (Stall et al., 1996).
Earlier in the epidemic, HIV stigmatization was shown to influence the way in which at-risk populations approached HIV testing. People at risk for HIV infection were more likely to seek testing that was offered anonymously (i.e., no names were recorded) than testing that was offered confidentially (i.e., names were kept in confidential files) (Fehrs et al., 1988; Johnson et al., 1988).
HIV/AIDS-related stigma also influences individuals’ responses to testing positive: It aggravates the psychological burden of receiving a positive HIV test (Chesney and Smith, 1999). Earlier in the epidemic, there were reports of severe psychological responses to notification, including denial, anxiety, depression, and suicidal ideation (Coates et al., 1987; Ostrow et al., 1989). Over time, studies have shown a decrease in severe reactions to being notified of positive test results; however, research continues to show that notification is associated with high distress. Distress is greatest immediately after notification and typically declines within 2 to 10 weeks (Ironson et al., 1990; Perry et al., 1990).
Stigma also affects the care of HIV-positive individuals. After a person tests positive, he or she faces decisions that include how to enter and adhere to care and whether to disclose HIV seropositivity to partners, friends, family, colleagues, employers, and health care providers (Chesney and Smith, 1999). At each level, a decision to disclose seropositivity may either enhance access to support and care or expose the individual to stigmatization and potential discrimination.
HEALTH CARE PROVIDERS
Accessing health care can be a challenge for people who are HIV positive, because the health care system itself is often a source of stigma. Health care professionals, particularly those who infrequently encounter HIV-positive people, can be insensitive to their patients’ concerns about stigma. In addition, health care professionals are not always knowledgeable about appropriate procedures for maintaining patient confidentiality (Herek et al., 1998).
The literature on caregiving reveals that stigmatization is evident among health care providers. Fear of contagion and fear of death have clear negative effects on health care providers’ attitudes toward and treatment of HIV-positive patients (Gerbert et al., 1991; Weinberger et al., 1992).
Health care providers also may fear stigmatization themselves because of their work with HIV-positive patients (Durham, 1994). Caregivers, whether professionals or volunteers, risk what Goffman called “courtesy stigma,” in which they are stigmatized as a result of their association with HIV/AIDS and people living with HIV disease. That stigma may influence their willingness to work with people with HIV or may make their work more difficult (Snyder et al., 1999).
PROVIDERS OF ANCILLARY AND SUPPORT SERVICES
Throughout the course of the HIV/AIDS epidemic, volunteers have been important participants in the nationwide response to the disease. Volunteers have worked to educate the public about HIV transmission and prevention, provided assistance to people living with HIV, donated money and resources to organizations that provide care and treatment for people living with HIV, and raised funds for research on treatment for HIV (Snyder et al., 1999).
Snyder et al. (1999) discussed stigmatization as a barrier to HIV/AIDS volunteerism and noted the power of stigma to actually punish volunteers for their good deeds. Like health care workers, HIV/AIDS volunteers may experience courtesy stigma.
Research reveals that volunteers and nonvolunteers consider HIV/AIDS volunteerism more stigmatizing than other forms of volunteerism (Snyder et al., 1999). Reports of having been made to feel embarrassed, stigmatized, or otherwise uncomfortable in connection with their volunteer activities are more common among HIV/AIDS volunteers than other types of volunteers (Omoto et al., 1998). Volunteers who had been unexpectedly stigmatized reported being less satisfied and more burned out than volunteers who expected to be stigmatized (Snyder et al., 1999). Reports of actual stigmatization predicted HIV/AIDS volunteers’ burnout from their work and hastened their decision to quit (Snyder et al., 1999).
One study hypothesized that volunteers’ association with HIV/AIDS and people living with the disease is responsible for their feelings of stigmatization (Snyder et al., 1999). Findings support the hypothesis that potential volunteers perceive HIV/AIDS volunteer work to be different and more stigmatizing than cancer volunteer work (Snyder et al., 1999). Potential stigmatization also prevents nonvolunteers from helping AIDS organizations.
