Differential Disclosure Across Social Network Ties Among Women Living with HIV

By using individual-level and network-level data simultaneously, this study provides a complex understanding of what factors are associated with women’s disclosure practices to members of their social networks. There are several important findings that emerge from this analysis, some in keeping with previous studies and others that are contradictory. Turning first to individual-level results, in keeping with recent work that has assessed women’s fears surrounding disclosure (e.g., Chin and Kroesen 1999; Clark et al. 2003; Gielen et al. 1997, 2000a; Sowell et al. 1997; Wolitski et al. 2008), these data show that women with disclosure-averse attitudes were less likely to disclose, regardless of the particular target. Women in the United States continue to worry about the negative outcomes of disclosure and such fears become real barriers in the process of disclosing to network members. Second, these data revealed that women who had higher CD4+ counts were more likely to disclose. This finding contributes to the jumble of inconsistent findings with respect to disease progression and disclosure among women (e.g., Kirshenbaum and Nevid 2002; Rotheram-Borus et al. 1997; Serovich et al. 2007; Simoni et al. 1995, 2000). Perhaps for these women, being physically healthier enables them to have a greater capacity to manage the social and psychological challenges of sharing the secret of their disease with important people in their lives.

There were also three important negative findings that are worth mentioning. Previous research has often linked disclosure to length of time since diagnosis (Kirshenbaum and Nevid 2002; Rotheram-Borus et al. 1997; Serovich et al. 2008; Simoni et al. 1995, 2000), emotional distress (Armistead et al. 1999; Comer et al. 2000; Kalichman et al. 2003; Rotheram-Borus et al. 1997), and race/ethnicity (Comer et al. 2000; Simoni et al. 1995). None of these factors were significantly associated with disclosure in networks in the final multivariable model, whereas disclosure averse attitudes, history of counseling, CD4+ count, and several social network-level variables were significantly associated.

A woman’s disclosure within her social network is largely related to network-level factors influencing her decision. First, network members who provide social support were more likely to be the targets of women’s disclosures, which supports other recent work on the importance of social support in facilitating disclosure for women (e.g., Kalichman et al. 2003; Simoni et al. 2000). Second, for women living with HIV/AIDS, spouses/romantic partners were the relationship to which women were most likely to have disclosed, relative to all other relationships. Several other researchers have found the highest rates of disclosure to sex partners (e.g., Simoni et al. 1995; Sowell et al. 1997), while other studies have highlighted the importance other social relationships (Armistead et al. 1999; Kalichman et al. 2003; Serovich et al. 2007; Sowell et al. 2003). Finally, for the women in this sample, network members who are known to be HIV-positive were much more likely to be the targets of disclosure relative to members known to be HIV-negative. This last result has been demonstrated repeatedly in samples of men who have sex with men, but rarely in samples of women (Arnold et al. 2008). Although many of these results are in keeping with previous literature, this study shows that even controlling for the more typically researched individual-level variables, these network-level variables are strongly associated with disclosure practices within networks.

It has been well established that women are selective in their decisions about to whom, how, and when to disclose (e.g., Armistead et al. 1999; Kalichman et al. 2003; Serovich et al. 2007; Simoni et al. 1995, 2000; Sowell et al. 1997, 2003). These network-level results provide insights into why women choose to disclose to certain members of their networks over others. In a recent review article, it was proposed that social roles and social identities both play an important function in the whys and wherefores of disclosure (Arnold et al. 2008). Viewing the present results through the lens of social roles and social identities imbues these data with added meaning.

Social roles, as conceptualized by many social psychologists, refer to ongoing relational identities, such as mother, sexual partner, husband, child, friend (Burke 1980; McCall and Simmons 1978; Stryker 1968; Turner 1978). In one’s social network, the social role occupied by a given member dictates a set of socially shared, taken-for-granted expectations for behaviors, values, and beliefs that are conferred to that respective member; these expectations, based on social role, are above and beyond the expectations that accompany that network member based on their history of support. Being a spouse/romantic partner is a social role laden with social expectations of trust, support, and honesty. For HIV-positive women there are additional expectations that incumbents of these roles need to be protected from disease; that they have a “right” to know about potential exposure to the disease. For a woman considering disclosing to an occupant of the “partner” role, these social expectations come into play, increasing the odds of disclosure, despite the well documented fears women have regarding disclosure to their partners.

Social identity, likewise, helps to bring clarity to these results. Most social psychologists conceptualize social identities as large social categories, which people occupy, such as African American, woman, and HIV-positive person (Hogg and Abrams 1988; Tajfel and Turner 1979; Turner 1982, 1985, Turner et al. 1987). Like social roles, social identities are also associated with a set of expectations for behaviors. In the disclosure process, perhaps the most salient social identity is “HIV-positive person”. Particularly, in the United States where HIV/AIDS has long since been a highly politicized disease, there is a host of socially agreed upon expectations attached to “HIV-positive person” as a social identity. Perhaps part of why women were more likely to disclose to other HIV-positive persons was because of the socially shared expectations for others who share the HIV-positive identity. Paramount among these expectations may be an assumption that another HIV-positive person will share the burden of stigma, will not reject one based on fears of disease, and will likely be a reliable source of continued support.

Despite the strengths of the social network data for the modeling of the disclosure process, there are a few limitations to the current data that must be acknowledged. First, this study uses cross-sectional data. As such, the results are inherently associational and not causal. Second, the data are not exhaustive of disclosure events in the lives of the women under study. These data come from questions that begin with asking women to delineate network ties (couched as friends and others), followed by questions regarding having disclosed status or not to those network members. It is likely that past network members to whom women disclosed but who reacted negatively to the disclosure were no longer within the domain of relations under study here. Thus, these results should be interpreted within the domain of disclosure practices with ongoing social relationships with important network members only. Third, the measure of disclosure used here is defined somewhat differently from other studies. Here women reported on whether or not network members “know your HIV status,” which allows for the possibility of a third party having made the disclosure. Thus, in some cases, disclosure may be more properly interpreted at HIV status “awareness.” Fourth, because disclosure practices were investigated for women who delineated network ties, there was no disclosure information collected on the minority of women who did not specify their network. Additional analyses not reported here showed that women who did not delineate a network perceived less social support in general. Given the link between disclosure and receipt of social support (e.g., Chin and Kroesen 1999), it is entirely possible that women who did not delineate their networks were among the least likely to disclose their status to anyone.

These data have important implications for future research on the disclosure practices of women living with HIV. First, research on disclosure would benefit greatly from increased attention to disclosure within relationships and within social networks. Disclosure is inherently a social process, including at least two persons. If work on disclosure is to progress it must move beyond the typical focus on the disclosing individual and move toward an examination of relationships and networks. In depth qualitative interviews with women about their relationships and how, when, and why they disclosed or not to key persons would inform research on this topic. Moreover, detailed qualitative examinations of women’s social networks may help to uncover social factors that encourage and discourage disclosure. For example being a part of a network of religious persons (as many Latinas and African America women are) may facilitate or inhibit disclosure. Traditional values held dear in such a network may discourage disclosure. The social support, however, that women derive from these communities may encourage disclosure. The data presented here suggest both processes will likely be in play. Networks impact behaviors in powerful ways and there is a dearth of research documenting these phenomenon and the implications such social forces may have on disclosure practices and subsequent secondary prevention efforts directed at HIV-positive women.