Two hundred and two HIV-positive participants completed the survey. Refusal rates ranged from 10% to 30% depending on the site of recruitment for the study. Fifty percent of the sample was female and the mean age was 43 years (range 18–76 years). Fifty-six percent of participants were African American, 28% were White, 10% were Latino/a and 6% were Asian American, Native American, or another race/ethnicity. Over half the sample reported income below federal poverty level ($1140 per month for family of two), and 70% reported a high school education or less. Sixty-nine percent of participants identified themselves as heterosexual, 22% reported intravenous drug use (IDU) as a risk factor for HIV, and over 70% reported being currently on antiretroviral therapy. Missing rates by stigma items ranged from 0% to 3%, and none of the scales had more than 25% of items missing. The entire survey took participants 25 minutes to complete on average, with a Flesh-Kincaid reading level of grade 6.4 (Microsoft Word 2000, Redmond, WA)
Eigenvalues and the scree plot indicated four existing underlying factors. A four-factor oblique rotation demonstrated that three of the factors consisted of items representing the four hypothesized domains. Items generated from the hypothesized domain of “stereotypes” consistently loaded on factor 1, items from the domain of “disclosure concerns” consistently loaded on factor 2, and items from the domain of “social relationships” consistently loaded on factor 3. Items generated from the fourth domain of “fear of contagion” collapsed with “social relationships,” loading on factor 3. Finally, a new (not hypothesized) domain emerged in factor 4, consisting of items related to level of personal comfort with one’s HIV diagnosis, which we refer to as “self-acceptance”. The items reflect a range of experiences of self-acceptance. “I feel ashamed to tell other people that I have HIV” reflects a low level of self acceptance, the item “My family is comfortable talking with me about HIV” suggests a level of acceptance where an individual feels comfortable with his/her diagnosis around a trusted group of people, while “I am comfortable telling anyone I know” represents the high end of the self-acceptance trajectory. The concept of self-acceptance is central to the framework of stigma we have developed and published from our previously described qualitative data.
In we report the standardized regression coefficients in the four-factor oblique solution for the 28 stigma items. Standardized regression coefficients represent the individual and non-redundant contribution that each factor is making. All items loaded consistently on one factor and no items loaded >0.30 on more than one factor or subscale. Twelve items loaded on factor 1 (stereotypes), with a range of 0.50 to 0.79; five items loaded on factor 2 (disclosure concerns) with a range of 0.60 to 0.71; seven items loaded on factor 3 (social relationships) with a range of 0.46 to 0.73; and four items loaded on factor 4 (self-acceptance) with a range of 0.37 to 0.72. Items addressing the internalized stigma of HIV as a chronic illness (item 1), disclosure concerns for care seeking and HIV medications (items 13 and 14), and perceptions/experiences of stigma from health care providers (items 18, 19) all loaded more highly than any other items on their respective factors (stereotypes, disclosure concerns, social relationships). Items describing stigma in the context of parenting (items 7, 8, 12) all loaded on factor 1 (stereotypes) with standardized regression coefficients of 0.50 or greater.
Four-Factors Pattern Matrix (Standardized Regression Coefficients) for 28 Final Internalized Stigma Scale Items
reports the descriptive statistics, internal consistency reliability estimates, and item discrimination rates for the internalized stigma scales. Mean scores on the four subscales ranged from 29 (social relationships) to 54 (self-acceptance), with higher scores reflecting greater internalized stigma. Standard deviations ranged from 21 (stereotypes) to 27 (disclosure concerns). Most of the scales were positively skewed (range 0.26–0.82), with the exception of self-acceptance, which was very slightly negatively skewed (−0.03). All of the subscales had participants scoring the maximum (range 1% to 7%) and the overall scale had 1% of participants with maximum scores. All subscales also had participants scoring the minimum (range 0.5%–16%), however no participants scored the minimum on all subscales to result in an overall scale score of 0. The internal consistency reliability of the overall scale was 0.93. With the exception of the self-acceptance scale (alpha=0.66) all other scales had Cronbach’s alpha of 0.85 or higher. Item discrimination rates ranged from 72% (social relationships) to 100% (stereotypes), and no item correlated significantly higher with another scale than with its own in multitrait scaling analysis.
Descriptive Statistics, Internal Consistency Reliability, and Item Discrimination for Internalized Stigma Subscales and Overall Scale
Intercorrelations among the four scales are presented in . All correlations between scales were significant (p<.01) and ranged between 0.33 (stereotypes and self-acceptance scales) and 0.61 (stereotypes and social relationship scales).
Product-Moment Correlations Among Internalized Stigma Scales
presents correlations between the internalized stigma scale and other constructs we hypothesized would be associated with experiences and perceptions of HIV-related stigma. Consistent with our hypothesis, the overall internalized stigma scale had a strong positive correlation with the 5-item shame scale (r = 0.58). The correlation between shame and social relationship stigma was strongest (r = 0.55) and the correlation between shame and self-acceptance was considerably weaker (r = 0.27). The overall internalized stigma scale was also negatively correlated with social support (r = −0.43), such that persons reporting greater levels of stigma experienced low levels of social support. Social support was most strongly correlated with social relationship stigma (r = −0.40) and its correlation with the other scales ranged from −0.27 to −0.36. The SF-12 MCS was also significantly negatively correlated with the stigma scales (r’s ranged −0.26 to −0.44), such that those who reported greater levels of internalized stigma also reported poorer mental health. Though we hypothesized the SF-12 PCS would be weakly correlated with the stigma scales, no significant correlation was found in our sample.
Product-Moment Correlations of Internalized Stigma Scales with Other Constructs
presents mean internalized stigma scores by sociodemographic characteristic in our sample. We found no statistically significant differences in overall scale scores by gender or age in our sample. Mean overall scores varied by race/ethnicity among respondents, with African Americans reporting significantly greater levels of stigma compared to whites for all scales except for social relationships scale. Mean overall internalized stigma scores were also significantly higher for participants who reported income below federal poverty level, speaking a primary language other than English, no or some high school education, being unmarried, being heterosexual and being diagnosed with HIV in the past 5 years. Overall scores were not significantly associated with history of IDU, history of AIDS diagnosis, current CD4 cell count, or current ART use. Although not always reflected in the overall stigma scale means, significant differences (p≤ 0.05 level or greater) in stigma subscales (stereotypes, disclosure concerns, social relationships, self acceptance) were observed for one or more of the following subgroup characteristics: age, gender, race, income, language, education, relationship status, sexual preference, IDU, years since HIV diagnosis, and AIDS diagnosis ().
Internalized Stigma Scale Mean Scores by Sociodemographic Characteristics (n = 202)