Abstract
The layering of HIV-related stigma with stigmas associated with gender, race, and class poses a methodological challenge to those seeking to understand and, thereby, to minimize its negative effects. In this meta-study of 32 reports of studies of stigma conducted with HIV-positive women, we found that gender was hardly addressed despite the all-female composition of samples. Neither sexual orientation nor social class received much notice. Race was the dominant category addressed, most notably in reports featuring women in only one race/ethnic group. The relative absence of attention to these categories as cultural performances suggests the recurring assumption that sample inclusiveness automatically implies the inclusion of gender, race, and class, which is itself a cultural performance.
Giving HIV infection its “peculiarly stigma-sensitive epidemiology” (CitationNovick, 1997, p. 54) are the “layers” of stigma of which it is composed (Novick; CitationReidpath & Chan, 2005). HIV-positive persons are subject to stigmatization—that is, to the consequences of being designated as socially deviant—not only because they have contracted a transmissible, incurable, and, until relatively recently, fatal infection, but also because of their locations on key axes of difference, mainly gender, sexual orientation, race/ethnicity, and social class. HIV-related stigma is layered with the stigmas of homosexuality, hypersexuality (promiscuity, prostitution), and drug abuse variously associated with men, women, and persons in the lower social classes and (in the United States) in the race/ethnic minority (CitationBunting, 1996; CitationQuinn, 1993; Reidpath & Chan; Treichler, 1990).
The layering of HIV-related stigma with gender-, sexual-orientation-, race-, and class-related stigmas poses a significant methodological challenge to those seeking to understand and, thereby, to develop interventions to minimize its negative effects. Our purpose in this article is to describe how gender, race/ethnicity, and social class were addressed in studies of stigma conducted with HIV-positive women.
METHOD
This review of research is a meta-study focused on methods (CitationPaterson, Thorne, Canam, & Jillings, 2001); that is, we sought to ascertain how key categories of difference were addressed in a body of research on HIV-related stigma in women, not to summarize the findings per se (the subject of another paper [CitationSandelowski, Voils, Barroso, & Lee, 2008]).
Report Sampling
This study is based on 32 reports (profiled in and cited [∗] in the reference list) of empirical qualitative and quantitative studies conducted with HIV-positive women living in the United States of any sexual orientation, race/ethnicity, social class, or nationality. These reports were retrieved in July of 2005 and in June and August of 2006 in the course of an ongoing methodological study. Our purpose in this larger study is to develop methods to synthesize qualitative and quantitative research findings. To achieve this purpose, we are using reports of studies of antiretroviral adherence and stigma in HIV-positive women.
TABLE 1 Profile of Reports (N = 32)
For the meta-study featured here, we selected research reports from our larger sample of reports in which authors explicitly stated that their research purpose was to examine how HIV-positive women understood, experienced, or managed the social consequences of being HIV-positive (including disclosure decision making), and factors associated with, and interventions to manage, stigma in women. We excluded reports published before 1997 to account for the advent of antiretroviral therapy, as it was instrumental in changing HIV infection from a mortal to a chronic disease and, thereby, likely altered social attitudes toward HIV infection and HIV-positive persons.
To locate reports, we used electronic databases housing citations to literature across the health, behavioral, and social sciences, including the following: Academic Search Elite, Alternative Press Index, CINAHL (Cumulative Index to Nursing and Allied Health Literature), Cochrane Central Register of Controlled Trials, PsycINFO, PubMed, and Sociological Abstracts. We used variations (e.g., extensions, truncations, synonyms) of the following search terms to accommodate the distinctive features of each of these databases: HIV, AIDS, women, stigma, (truth-, self-) disclosure, discrimination, prejudice, social isolation, and stereotyping. We augmented electronic searching with the use of ancestry and descendency approaches (CitationCooper, 1998), in addition to hand-searching the print collections of our university libraries for books and anthologies on HIV/AIDS likely to consist of or include reports of empirical research findings on stigma in HIV-positive women.
Because all of the sample delimitations were set to accommodate the methodological objectives of our study—not to examine the layering of HIV-related stigma per se—these delimitations constitute also limitations to the findings presented here. Yet, we recognized in these reports an opportunity to examine in depth how key categories of difference were addressed in relation to a phenomenon (stigma) that is itself essentially about difference (deviance). Moreover, these studies are part of the mobilization of gender to the forefront of HIV/AIDS research that began in the early 1990s with studies focused solely on the experiences of HIV-positive women. Researchers began to deploy gender to justify their exclusive focus on women by emphasizing the change in the demographic profile of HIV infection from primarily a disease of gay men to a disease of increasing numbers of heterosexual women with experiences likely to be different from gay men, and by protesting the prevailing view of women in HIV-related research as either caregivers of HIV-positive persons or as agents of transmission of the infection to men and children (CitationBova, 2000; CitationTürmen, 2003).
Data Collection and Analysis
We extracted from these reports information about sample compositions (i.e., sexual orientation, race/ethnicity, and social class, including education, employment, and income data) and presentations of any link made between any aspect of stigma or its management and one or more of these categories. We then used a modified version of Hancock's (2007, pp. 63–64) framework () to discern how these categories were addressed. In this framework, the “intersectional” approach to studying difference is preferentially compared with the “unitary” and “multiple” approaches.
TABLE 2 Framework for Studying Categories of Difference
Intersectionality is a “research paradigm” (CitationHancock, 2007, p. 63) and “methodological intervention” (CitationMcCall, 2005, p. 1779) challenging the within-category essentialism of the unitary approach, whereby membership in the one category of difference addressed is seen to be uniform (e.g., women and men are uniformly treated as members of the groups woman and man). Also challenged is the between-category determinism of the “multiple approach” (Hancock, p. 64), whereby membership in the two or more categories addressed is fixed, the relationship between them is predetermined (e.g., race is more salient than gender), or both occur. In contrast, in the intersectional approach, the “relationships among multiple dimensions and modalities of social relations and subject formations [are themselves the] central categor[ies] of analysis” (CitationMcCall, 2005, p. 1771). In the intersectional approach, intracategory diversity is acknowledged while leaving open to investigation the actual relationship between and among categories operating at any one time in any one circumstance. Category relationships are assumed to be neither fixed nor simply additive, but rather dynamic and ongoing interactional accomplishments and cultural performances. Gender, for example, is not in or of any person, but rather gender continually “gets done” and often with little notice (CitationMartin, 2003), as whenever men in nursing are referred to as “male” nurses, while women in nursing are referred to simply as nurses, and whenever HIV infection is depicted as a disease of vulnerable persons (CitationBredström, 2006).
To optimize the validity of the results presented here, all rounds of data extraction and analysis were completed by at least two of the authors and discussed in regular meetings of the research team.
RESULTS
Profile of Reports
The 15 reports of qualitative, and 17 reports of quantitative, studies profiled in constitute the sample for this meta-study. Eight of these reports are from nursing; the remaining reports are from the behavioral and social sciences, social work, or public health. The qualitative studies were mostly descriptive and the quantitative studies, mostly descriptive/correlational. The studies were largely atheoretical, with passing or “ceremonial” (CitationWickes & Emmison, 2007, p. 312) references to Goffman's (1963) and others’ work on stigma, and no references to any theory of gender, race, or social class. Taken as a whole, the disclosure decision-making process to manage stigma is emphasized in the findings in these reports, rather than the stigma experience per se.
Women in demographic minority groups constitute the majority of participants, with 13 reports of studies in which African American women compose at least 68% of the total sample. African American women are the epidemiological majority among U.S. women with HIV infection (CitationCenters for Disease Control and Prevention, 2007). Of these 13 reports, four are focused exclusively on African American women. An additional 10 reports are from studies in which African American and Hispanic women together compose at least 60% of the total sample. Three reports are focused exclusively or mostly (82%) on Caucasian (European American, White) women, and one report each on exclusively Hispanic (multiple ethnic/national groups) and Asian/Pacific Islander women (multiple ethnic/national groups). Four reports are from studies with approximately equal numbers of Caucasian women and women in one or more U.S. demographic minority groups. Women participants were predominately in lower social classes, as reflected in the information provided about education, employment, and income shown in . The five reports with information on sexual orientation indicate largely heterosexual women. In none of the reports of studies with women in at least two race/ethnic groups is social class designated by race/ethnicity; sexual orientation is designated by race/ethnicity in only one of these reports.
Approaches to Studying Difference
In reports in which categories of difference in relation to stigma are addressed at all, the unitary approach prevails. That is, categories of difference are treated largely as individual characteristics and demographic variables.
Sex Without Gender
In few of the 32 reports is stigma in relation to gender explicitly addressed, despite their all-female samples. For example, authors typically began their reports by emphasizing the importance of studying women, or women in certain race/ethnic or social class groups—women they surmise will be especially or differentially subject to HIV-related stigmatization by virtue of these categories of difference. Yet, none of these categories are used to qualify or interpret stigma or the disclosure decision-making process. The women constituting the sample in one quantitative study appear to be wholly incidental to the stated research purpose, as nothing in the introduction leads the reader to expect an all-female sample, nor is the all-female sample explained in any way.
Among the 32 reports are 11 reports of studies focused exclusively on women's disclosure of their own HIV status to their children. This topic is the most consistent factor distinguishing these reports as reports about women (as opposed to men), yet little notice is taken of the “gendering practice” (CitationMartin, 2003) involved in merely studying this topic in women. Interest in various aspects of maternal–child relations characterizes studies of HIV-positive women in general; in contrast, paternal–child relations are rarely addressed in studies of HIV-positive men. This difference is only partly due to demographic factors, that is, that studies of HIV-positive men include large numbers of gay men who are less likely than heterosexual men to be fathers, while studies of HIV-positive women include largely mothers or women of childbearing age contemplating motherhood. This difference is related also to the gendering practice whereby women are, more often than men, viewed and, therefore, studied as reproductive beings and as members of parent (mother)–child dyads. Moreover, owing to the cultural conflation of “normal” womanhood with motherhood, women's identity is more integrally linked to motherhood than men's identity is linked to fatherhood. In the case of HIV-positive women who are or want to be mothers, motherhood places them in a “double-bind” as they are following the cultural script for normal womanhood while violating the script that “good” mothers do not expose children to the risk of illness and death (CitationIngram & Hutchinson, 2000). Such conflicting scripts play little role (at least as discernible in research reports) in the stigmatization of HIV-positive men. Gender is, at best, only alluded to in reports in which authors note a maternal preference to disclose to daughters, as opposed to sons.
The best example of findings directly addressing gender is the CitationLekas, Siegel, and Schrimshaw (2006) report featuring African American, Caucasian, and Puerto Rican women. These women are described as minimizing HIV-related stigma, in part, by attributing it to sexism, that is, to the tendency they perceived to hold women to a higher standard and, thereby, to judge HIV-positive women more harshly than HIV-positive men.
One additional report, focused on disclosure to sexual partners, shows an effort to detail the distinctiveness of the relationship between women and men. Three reports are focused on the experience and risk of violence for women when they disclose their HIV status to sexual partners. The authors of these reports imply, rather than directly interpret, the gendering practices making women subject to mistreatment, violence, and the acquisition of HIV infection itself from men.
Sex Without Sexual Orientation and Class
Although they are recurrently implicated in HIV-related stigmatization, neither sexual orientation nor social class receives much notice in these reports. Only five reports contain information on the sexual orientation of the women participants (see ), and in none of them is sexual orientation directly addressed in the findings. Although every report contains some information about the education, employment, or income status of women participants, in only four reports do authors address social class in the findings, variously finding no association between any social class indicator and rates of disclosure to children, and associations between education and numbers of persons disclosed to and HIV-related violence, and between income and fear that family members would be hurt knowing women were HIV positive.
Race With and Without Gender or Class
The category of difference most consistently addressed is race/ethnicity, and the reports in which it is mostly extensively addressed are of studies conducted with women conceived as belonging in one race/ethnicity group. The qualitative reports focused on Caucasian women emphasize the gender and race performances entailed in the belief that “nice girls don't get it [AIDS]” (quotation in title from CitationGrove, Kelly, & Liu, 1997; see also CitationCarr & Gramling, 2004; CitationStanley, 1999). Armistead, Morse, Forehand, Morse, and Clark (1999) juxtapose the findings on disclosure of HIV infection they derived from their exclusively African American women in their quantitative study with disclosure findings derived from other studies with White male and female samples. Especially notable is their attention in their discussion section to the differences in marital status, age of children, and HIV exposure—not race per se—in offering possible explanations for why the African American women in their study differed from these other HIV-positive women and men on disclosure practices. In their report featuring African American, Caucasian, and Puerto Rican women, Lekas and colleagues (2006) described how these women managed stigma, not only by attributing the stigmatization of HIV-positive women to sexism, but also the stigmatization of HIV-positive minority women to racism, that is, to the perceived tendency to judge “minority” women more harshly than “White” women. This finding suggests these women's ability to use the sexism and racism targeted to women to their advantage and contrasts with findings in the Carr and Gramling (2004), Grove and colleagues (1997), and Stanley (1999) reports suggesting that women possessing the “symbolic capital” (Grove et al.) of being White, heterosexual, and middle class appeal to racism to differentiate themselves from the “other” women and men with HIV infection with whom they have difficulty identifying.
In the remaining reports, race/ethnicity is depicted largely as a fixed attribute of individuals with statistically significant differences either found or not found between women in one race/ethnicity group versus another.
DISCUSSION
Our major finding concerning how key categories of difference are addressed in reports of studies of stigma conducted with HIV-positive women is that they were largely not addressed despite their being mobilized in justifications for studying stigma in women or certain groups of women, in sample descriptions, or, less often, in findings and discussion of findings linking one or more aspects of stigma to one or more of these categories. The tendency to gloss these categories as cultural performances suggests the recurring assumption that sample inclusiveness automatically implies the inclusion of gender, race, and class, that is, that these categories are actually being engaged theoretically (CitationWhittle & Inhorn, 2001; CitationWickes & Emmison, 2007). This implicit equation is arguably itself a cultural (gender, race, and class) performance, one that is hardly unique to the reports featured here, but rather evident in much research on health disparities (CitationKrieger, 2005; Whittle & Inhorn). Difference is inherent in health disparities research, yet it remains largely unstaged in conceptualizations of difference (e.g., CitationBurman, 2004; CitationKempner, 2006; CitationMoser, 2006; CitationNye, 2005).
The gendered, raced, and classed layering of HIV-related stigma poses a significant challenge to those seeking to reduce its negative health consequences, as neither stigma nor gender, race, or social class are static attributes of individuals but rather social processes and cultural performances of power (CitationAndersen, 2005; CitationParker & Aggleton, 2003). Studying these different differences at the same time and in the “all-together” is indisputably difficult because of their intra- and intercategory complexity over time (CitationCulley, 2006; CitationDrevdahl, Philips, & Taylor, 2006) and the persistent struggle even to find the metaphor(s) appropriate to understanding these differences: for example, “matrix,” “revolving disco ball,” or “Rubik's cube” (CitationAndersen, 2005, p. 445). Even “intersection,” the metaphor at the heart of the intersectional approach, can evoke an overly static understanding of their operations. These operations defy simple conclusions vis-à-vis phenomena like stigma, which themselves implicate difference. Moreover, the tacit cultural knowledge and skill entailed in performing gender or race, which we all possess as members of the “cultures” to which we belong, resist verbal expression and, therefore, translation into empirical research. Gender and race are more readily experienced than they are noticed, described, or “pinned down” (CitationMartin, 2003, p. 351) as themes in qualitative research or variables in bivariate and multivariable analyses. Accordingly, the findings we present here are not to be read as judgments of the quality of the reports reviewed, but rather as efforts to take notice of the cultural performances entailed in “doing research” itself.
Scholars have long protested the treatment of gender, race, and other categories of difference as separate and uniform systems of oppression or sources of health and social disparities. They have criticized the simple dichotomization of sex (male/female) and the conflation of sex (a chromosomal and phenotypical categorization of persons as either male or female) with gender (the on-going cultural performance of various femininities and masculinities; CitationBredström, 2006; CitationConnell, 1995; CitationDworkin, 2005). They also have argued against naïve treatments of sex, race/ethnicity, and other such differences as demographic variables and the assumption that merely including enough persons in different sex or race/ethnic groups will permit valid conclusions to be drawn about gender or race/ethnicity, respectively (CitationEpstein, 2003, Citation2004; CitationKniepp & Drevdahl, 2003; CitationShim, 2002).
Not only does mere sample inclusiveness not guarantee insight into how categories of difference operate (cf. CitationCrane, Letvak, Lewallen, Hu, & Jones, 2004), but it also may reinstate the very stereotypes it was meant to remedy. Indeed, the politically correct replacement of the term sex with gender when gender is never addressed, and the simple reduction of sex, race, and class to background variables that are controlled for arguably themselves reflect cultural performances that may reinstate sexist, racist, and classist assumptions (CitationGlick, 2007). Such performances further the naïve notion that finding statistically or thematically “significant” sex or other differences explains anything about the operation of these categories in producing health outcomes, or that finding no such differences means that they are not operating.
Comparisons constitute a key analytic strategy in empirical research, most notably, research on health disparities. Even in qualitative studies, in which, in contrast to quantitative studies, the analytic focus is ideally on the complexities of N = 1 cases and not on comparisons of groups per se (CitationSandelowski, 1996; CitationSivesind, 1999), the interpretation of these cases implies one or more comparative reference points (e.g., to people, events, situations). For example, a focus on women implies men, even if men are not included as participants. A focus on African American women implies African American men in addition to women in other race/ethnic groups, while a focus on HIV-positive women implies HIV-negative women, and HIV-positive and HIV-negative men. Although individual studies cannot include all potentially relevant categories of persons, and judgments of what comparisons are relevant themselves entail cultural performances, difference can still be addressed by actively engaging the comparisons they imply in the interpretation of data or discussion of findings. Among the reports reviewed here with the most nuanced treatments of race were those conducted with women in only “one” race/ethnicity group. Categories of difference can be directly addressed by devising data collection strategies that engage participants to contemplate, for example, what being women (as opposed to men), or women in certain race/ethnic and social class groups (as opposed to other groups), or persons on axes of difference selected by participants themselves play in relation to the events under study. No matter what comparisons are evoked, they acquire their value when they are staged in theories explicitly addressing one or more of these categories.
The methodological study referred to in this article, entitled “Integrating Qualitative and Quantitative Research Findings,” is funded by the National Institute of Nursing Research, National Institutes of Health (5R01NR004907, June 3, 2005–March 31, 2010).
This material was supported also with resources and facilities at the Veterans Affairs Medical Center in Durham, NC. Views expressed in this article are those of the authors and do not necessarily represent the Department of Veterans Affairs.
Related Research Data
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