Igualdad de oportunidades para visibilizar las

Whether to disclose one’s HIV status is a difficult decision that is often negotiated in an on- going way during people’s lives, and dependent upon various issues like social context, safety, and emotional/mental health (Eustace & Ilagan, 2010; Thoth et al., 2013). HIV disclosure is a complex and multifaceted process, which requires a person living with HIV to consider a number of social and contextual factors (Eustace & Ilagan, 2010). Disclosing one’s HIV status is a unique consideration for each person and each situation and can be filled with uncertainty about the consequences and confidentiality of disclosure (Lyon & D’Angelo, 2006). HIV disclosure is not a one-time event; it is a process that requires one to develop knowledge and skills to effectively communicate, and to read the context of the situation to ensure disclosure is safe. Disclosing one’s HIV status is about the

communication skills required to tell another person about a potential life-threatening, transmissible, stigmatized illness (Wiener, Mellins, Marhefka, & Battles, 2007). HIV disclosure is also the act of telling another person or persons about one’s HIV status, with or without the consent of the person living with HIV (Ontario Advisory Committee on

HIV/AIDS (OACHA), 2003).

HIV disclosure is not a single entity; it requires an understanding of the dichotomy between disclosure and non-disclosure. HIV disclosure and HIV non-disclosure are

considered to be two distinct issues, however, both are similar in that they consist of

processual and situational events. Nevertheless, a division exists in the effect that disclosing or not disclosing may have on the person living with HIV. Issues related to disclosure are complex and may not always be helpful to the person disclosing that he or she is living with HIV (Thoth et al., 2013). People living with HIV do not disclose their HIV status because they fear negative reactions, privacy violation, stigma, and potential criminalization related to

HIV/AIDS (Swendeman et al., 2006). At the same time, not disclosing information to other

people can have a negative effect on one’s emotional and psychological well-being and their health functioning (Pennebaker, 1997), and has even resulted in violence and criminal prosecution for some people living with HIV (Canadian HIV/AIDS Legal Network [CHLN], 2012b). However, disclosure of one’s HIV status has often been framed as a valuable process for creating intimacy and open-ness, decreasing isolation and increasing emotional and social support (Thoth et al., 2013), which is associated with improved health status and

fewer negative mental health symptoms (Abramowitz, Koenig, Chandwani, Orban, Stein,

Lagrange, & Barnes, 2009; Lam et al., 2007; Wiener & Battles, 2006).

When deciding to disclose their HIV status to other people, studies have shown that youth take a number of situational and relationship factors into consideration. Batterham and colleagues (2005) noted that youth who had been recently diagnosed were less likely to disclose their HIV status than those who have been living with HIV for longer. A qualitative study by Michaud and colleagues (2009) found that adolescents were less likely to disclose their HIV status if their parent was also living with HIV, in an effort to protect their family. In a similar qualitative study by Hogwood, Campbell, and Butler (2013) it was found that the relationship between the youth and the person they are disclosing to was critical in making the decision to disclose. For example, youth considered the length and/or quality of their

relationship with the person, as well as whether they could trust that person (Hogwood et al., 2013). In addition, youth felt that building peer relationships were more important at their stage of life than risking rejection by disclosing their HIV status to their peers. Building relationships was also a way to test the ‘disclosure waters’ to see how people would react (Hogwood et al., 2013).

The decision to disclose one’s HIV status can be filled with tremendous fear and there were several barriers noted in the literature for youth living with HIV related to

confidentiality, rejection, and serostatus of their partner. Leonard and colleagues (2010) found that not being able to control who other people told after they disclosed was a barrier to disclosing one’s HIV status. This type of management is what Goffman (1963) terms “information control” because the person is constantly trying to monitor the information, “…to display or not to display; to tell or not to tell; to let on or not to let on; to lie or not to lie; and in each case, to whom, how, when and where." (p. 42).

Disclosing to a sexual or romantic partner or potential partner is shown in the literature to be a particularly challenging situation (Michaud et al., 2009) because youth living with HIV feared being rejected (Foster et al., 2007). Michaud and colleagues (2009) found that youth where afraid to disclose their HIV status because of previous painful experiences that resulted in rejection. There are also notable differences in the literature between disclosure decisions to main and casual partners, with disclosure to casual partners occurring less often than disclosure to main partners (D’Angelo et al., 2001; O’Brien et al., 2003). In addition, HIV disclosure was increased two-fold for youth living with HIV who knew their partner was also living with HIV (D’Angelo et al., 2001), whereas youth who had an HIV-negative partner were less likely to disclose their HIV status (Batterham et al., 2005).

The literature demonstrates that youth who chose to disclose, reported a number of positive social and health outcomes compared to those who did not yet disclose (i.e., at the time of the study). For example, D’Angelo and colleagues (2001) and Lyon and D’Angelo (2006) have found that youth who disclosed their HIV status to their family and friends reported improved mental health and emotional status and an enhanced sense of social support resources. Wiener and Battles (2006) found that disclosure of HIV status to family and friends facilitated future disclosure and increased confidence with this challenging aspect of life, including in situations with sexual partners. Along with increased social confidence and enhanced relationships, disclosure has been connected with improved adherence to HIV

medications (Mellins, Brackis-Cott, Dolezal, & Abrams, 2004) and a higher CD4 count

(Sherman, Bonanno, Wiener, & Battles, 2000).

2.5

The Criminalization of HIV Non-Disclosure

The stresses associated with HIV disclosure have been exacerbated by the Supreme Court of Canada’s October 2012 decision that persons with HIV must disclose their status prior to situations where sexual contact poses a “realistic possibility” of HIV transmission (CHLN, 2012). The criminalization of HIV non-disclosure has emerged as an issue that presents

significant barriers to HIV disclosure for people living with HIV/AIDS. People living with

HIV or AIDS can and have been charged for not disclosing their status to a sexual partner. Three HIV non-disclosure criminal law cases (R. v. Cuerrier, 1998, R. v. Mabior, 2012 and R. v. D. C., 2012) ultimately led to the Supreme Court of Canada decisions in 2012. In R. v. Cuerrier (1998) a man was charged with two counts of aggravated sexual assault because he engaged in unprotected sexual activity with his partners without disclosing that he knew he