Through a set of diverse recruitment strategies, a sample of YPLH was recruited with a sociodemographic profile similar to that reported for HIV infected youth nationally. Most were gay or bisexual males (74% vs. 60% nationally) and of ethnic minority heritage (75% vs. 60% nationally), and few early adolescents were identified (CDC, 2002
). The sample also had a high proportion of HIV symptomatic and AIDS diagnosed YPLH, reflecting the delayed identification of YPLH nationally, often only after symptoms of infection appear (Rotheram-Borus, O'Keefe, Kracker, & Foo, 2000
). However, this convenience sample was selected based on recent substance use and may not be representative of or generalizable to all YPLH in the United States. Many YPLH do not engage in substance use and sexual risk behaviors after learning that they are HIV positive (Rotheram-Borus et al., 2001
) and they may experience less HIV-stigma than their more risky peers. In addition, PLH with high levels of perceived or feared HIV-stigma may be less likely to participate in this or any voluntary research study.
Another limitation of this study is the timing of the assessments. The primary goal of the research study was to assess the efficacy of a secondary prevention intervention (see Rotheram-Borus et al., 2004
). The stigma measures were first administered at the three month follow-up interview in order to reduce the already heavy assessment burden incurred by collecting both lifetime and recent information in the baseline interview. Some participants received intervention sessions prior to the administration of the stigma measures. The intervention may have impacted reports of stigma, particularly perceived stigma. We attempted to control for these potential confounding effects in the multivariate models.
Almost all YPLH (89%) reported perceived stigma in the past three months compared to only 31% reporting recent enacted experiences and 64% reporting enacted HIV-stigma during their lifetime. HIV-stigma does not need to be enacted for PLH to be affected by fears and perceptions of HIV-stigma and related discrimination. The higher levels of perceived stigma compared to enacted stigma are consistent across the two dimensions that are shared in the enacted and perceived stigma measures, avoidance and social rejection. However, a limitation of this study is that the enacted and perceived stigma measures are not directly comparable. Direct translation of questions from enacted to perceived domains is problematic in terms of meaning and interpretation; responses are innately different for questions regarding perceptions versus events. The measures are also relatively brief compared to others currently available (see Berger et al., 2001
; Fife & Wright, 2000
) and may not capture the variety of stigma experiences and perceptions faced by PLH. They were also not tested for validity and reliability. However, slightly modified versions of the seven perceived stigma items were used in another study and found to have good construct validity and reliability; the alpha coefficient for the nine-item scale used was .84 for PLH respondents (Wight, Aneshensel, Murphy, Miller-Martinez, & Beals, 2005
This research should be considered exploratory, particularly the analyses of HIV-stigma sub-dimensions, which had a marginally acceptable number of items to be considered for factor analysis. In addition, the enacted stigma questions sought to capture the diversity of stigma experiences but did not capture an accumulation of stigma experiences. Considering the increasingly recognized importance of HIV-related stigma for prevention and treatment efforts, psychometrically valid and reliable measures for HIV and illness stigma are needed (see Berger et al., 2001
; Fife & Wright, 2000
). Brief measures are of particular importance to encourage assessment of stigma in studies whose primary focus is not stigma (i.e., intervention studies), and to keep the assessment burden low for research participants. However, even the results obtained with these brief measures point to the importance of examining different dimensions of stigma (i.e., avoidance, rejection, shame, abuse) as distinct outcomes.
This study supports the call to “resocialize” conceptualizations of HIV-stigma through consideration of the social ecological factors that feed upon, reinforce, and cross-cut stigma resulting from HIV/AIDS and other existing sources such as racism, gender and economic inequalities, and other forms of “structural violence” (Link & Phelan, 2001
; Parker & Aggleton, 2003
; Castro & Farmer, 2005
). This study documents the effect that “layering” of stigmas has on the experiences and perceptions of HIV-stigma among PLH. Gay/bisexual identity predicted enacted HIV-stigma (avoidance dimension and the overall measure), supporting the hypothesis around the “layered” or “double” that gay PLH experience (Novick, 1997
; Crandall et al., 1997
; Herek & Capitanio, 1999
). Gay/bisexual identity did not predict perceived stigma, suggesting that the gay/bisexual YPLH in this study have not significantly internalized feelings of blame for their HIV infection nor do they have fears and perceptions of HIV-stigma. By contrast, bartering sex predicted enacted abuse stigma as well as perceived stigma (avoidance dimension and the overall measure). YPLH who barter sex are likely to be among the most marginalized and powerless persons in the study, which is reflected in higher levels perceived avoidance and enacted abuse.
Injection drug use did not predict enacted stigma and, importantly, was associated with lower shame and overall perceived stigma. This counterintuitive finding should be explored in future research but we suggest two possible explanations. IDUs may have greater fears of stigmatization related to their drug use rather than their HIV status, reflecting what Goffman (1963)
referred to as a “master status” in a hierarchy of potentially stigmatizing traits or identities. IDUs concerns over stigma related to their drug use may result in lower concerns around HIV-stigma, reflected in lower reports of perceived HIV stigma. Alternatively, IDUs may have developed mechanisms for coping with stigma related to their drug use that translates to their ability to cope with enacted stigma and mitigate perceived or internalized HIV-stigma.
Similar explanations may account for the lack of statistically significant associations between ethnicity and HIV-stigma. African American ethnicity was associated with perceived overall and social rejection HIV-stigma in univariate models but the association did not hold in multivariate models. Although ethnicity and poverty status did not meet our criteria for inclusion in the final multivariate models, we compared the final models presented in Tables and with models that also included ethnicity and poverty as predictors. Neither predictor was significant for any stigma outcome and none of the other predictors changed direction of association or statistical significance except for the association between gender and enacted avoidance stigma (OR=.18, 95% C.I. = .03 to 1.03).
The lack of significant findings for ethnicity and poverty, as opposed to gay/bisexual identity and bartering sex, suggests that stigmas that are likely to layer onto HIV-stigma are those that are associated with what are considered to be voluntary behaviors that facilitate attributions of blame for the stigmatized trait (Weiner et al., 1988
). The sample size in this study may have also limited the ability to detect differences based on ethnicity or poverty, and also precluded testing moderating effects within subsamples of women, or heterosexual men, or injection drug users.
HIV disease progression predicted both enacted (avoidance, abuse, and overall) and perceived HIV-stigma (avoidance, shame, and overall). These findings support the hypotheses that PLH awareness of advancing HIV disease and others awareness of serostatus through manifest HIV infection results in increased perceptions and experiences of HIV-stigma. Gay/bisexual YPLH who were symptomatic or AIDS-diagnosed had higher odds of reporting enacted avoidance and overall enacted HIV-stigma compared to their heterosexual peers, which further supports the layering hypothesis for gay/bisexual PLH. This finding might also lend support for the suggestion that men who have sex with men may be more sensitive to signs and symptoms of HIV infection and, in some settings, may have more fears of infection that would lead to stigmatizing reactions toward their peers living with HIV/AIDS (Rinken, 2002
). This should be examined more in future research and has implications for interventions that might attempt to reduce HIV-stigma and increase serostatus disclosure in sexual encounters.
A high proportion of family and friends knowing a PLH serostatus was not associated with enacted stigma but was associated with lower perceived stigma. This is not surprising since we would expect people with high levels of perceived stigma to generally be more closeted about their serostatus and vice versa. Perceived HIV-stigma very likely influences YPLH to limit others' awareness of their HIV serostatus, including decreased disclosure. This may result in both self-protective (e.g., limiting opportunities for stigmatizing and discriminating events and reactions), and detrimental outcomes (e.g., limiting social support and receipt of appropriate care and services, increased risk of HIV transmission, etc.). Supporting YPLH in making informed and well-planned decisions about serostatus disclosure may help maximize the benefits of those decisions for both YPLH and society.
Males report less perceived HIV-stigma than females in three of the four multivariate models. Females tend to have higher levels of depression and anxiety than males, and therefore may be more likely to have fears and anxiety regarding their HIV status. Young women living with HIV would appear to benefit from targeted interventions that help them cope with their own feelings and fears about their HIV infection, which may be exacerbated by higher rates of emotional distress. The YPLH in this study have high levels of emotional distress (see Rotheram-Borus et al., 2004
). Depressed persons make global, stable, and internal attributions about negative events. Emotional distress may color perceptions and result in increased perceived stigma and reports of enacted stigma (Sechrist, Swim, & Mark, 2003
). The results indicating higher rates of perceived stigma compared to enacted experiences support this idea. The impact that stigma likely has on emotional distress is not contested. However, some degree of reciprocal causation, which can not be accounted for in this relatively small cross-sectional study, should be acknowledged and examined in future research.
Conceptualizing stigma as a form of stress that impacts emotional distress highlights the importance of examining styles of coping with HIV infection in relation to HIV-stigma (Miller & Kaiser, 2001
; Scambler, 1998
). Similarly, serostatus disclosure may be considered a crucial form of coping with HIV infection and is likely to be heavily impacted by stigma experiences and fears. Social support is another factor that should be examined in relation to HIV-stigma; PLH with high levels of prior stigma experiences or current fears and perceptions may isolate themselves from social support networks in order to prevent stigmatizing events. Future research using longitudinal data should examine how HIV-stigma may predict or mediate outcomes such as emotional distress, coping styles, social support, serostatus disclosure, and sexual risk behaviors.