Ethical, Social, and Legal Implications of Disclosure

AIDS Education and Prevention, 24(2), 179–192, 2012 © 2012 The Guilford Press

179

Andre Maiorana, Kimberly A. Koester, Janet J. Myers, Karen C. Lloyd, Starley B. Shade, Carol Dawson- Rose, and Stephen F. Morin are all affiliated with the Center for AIDS Prevention Studies, AIDS Policy Research Center, at the University of California in San Francisco. This publication was partially supported by grant number H97HA00261 from the Health Resources and Services Administration (HRSA) Special Projects of National Significance (SPNS) Program. The publica- tion’s contents are solely the responsibility of the authors and do not necessarily represent the official view of HRSA or the SPNS program. We thank the patients who participated in the study for sharing their experiences with us. Address correspondence to Andre Maiorana, MPH, Center for AIDS Prevention Studies, AIDS Policy Research Center, University of California, 50 Beale St, Suite 1300, San Francisco, CA 94105; E-mail: [email protected]

MAIORANA ET AL. HELPING PATIENTS TALK ABOUT HIV

HELPING PATIENTS TALK ABOUT HIV: INCLUSION OF MESSAGES ON DISCLOSURE IN PREVENTION WITH POSITIVES INTERVENTIONS IN CLINICAL SETTINGS Andre Maiorana, Kimberly A. Koester, Janet J. Myers, Karen C. Lloyd, Starley B. Shade, Carol Dawson-Rose, and Stephen F. Morin

Disclosure of HIV serostatus by HIV-infected individuals is considered a prevention strategy, under the assumption that disclosure will prompt risk reduction practices among sex partners. We examined patients’ self-reports regarding disclosure messages they found relevant as part of prevention with positives (PwP) interventions in clinical settings. We conducted 52 in-depth interviews with patients participating in 13 PwP interventions. We found that the opportunity to reflect about living with HIV, explore fears of stigma and rejection, develop communication skills and strategies to disclose, and explore a sense of responsibility influenced patients’ intention to disclose and their disclosure practices. PwP interventions need to include a combination of messages about disclosure strategies, stigma, and com- munication, as well as helping patients frame disclosure as a process that includes situations and interactions to consider post-disclosure. PwP disclo- sure counseling can help influence a shift in patients’ risk towards safer sex practices.

HIV disclosure is the practice of telling others about one’s HIV serostatus. Disclo- sure of serostatus is considered a prevention strategy, under the assumption that disclosure will prompt risk reduction practices among sex partners (Simoni & Pan- talone, 2004). However, the relationship between disclosure of an HIV positive sta- tus and sexual risk behavior is difficult to assess (Pinkerton & Galletly, 2007), and little research has tested whether risk reduction occurs as a consequence of HIV disclosure.

180 MAIORANA ET AL.

LITERATURE ON DISCLOSURE The literature on disclosure, while mainly descriptive, is helpful for understand-

ing what issues related to HIV status disclosure may need to be addressed in PwP interventions. Serostatus disclosure is a unique and complex process nested within social relationships, situations, and contexts (Cusick & Rhodes, 1999; Derlega, Winstead, Greene, Serovich, & Elwood, 2002). HIV serostatus disclosure to sexual partners may vary by race or ethnicity (Mansergh, Marks, & Simoni, 1995; Marks et al., 1992; Mason, Marks, Simoni, Ruiz, & Richardson, 1995; Mayfield Arnold, Rice, Flannery, & Rotheram-Borus, 2008), gender (Ciccarone et al., 2003; Duru et al., 2006; Mayfield Arnold et al., 2008; Weinhardt et al., 2004), sexual orientation (Ciccarone et al., 2003; Duru et al., 2006; Weinhardt et al., 2004), partner type (Bu- chanan, Poppen, & Reisen, 1996; Carballo-Dieguez, Remien, Dolezal, & Wagner, 1997; Crepaz & Marks, 2003; Duru et al., 2006; Mansergh et al., 1995; Perry et al., 1994; Poppen, Reisen, Zea, Bianchi, & Echeverry, 2005; Stein et al., 1998; Wolitski, Rietmeijer, Goldbaum, & Wilson, 1998), partner serostatus (Bachmann et al., 2009; Crepaz & Marks, 2003; De Rosa & Marks, 1998; Marks et al., 1992; Poppen et al., 2005), psychological well-being (Armistead, Morse, Forehand, Morse, & Clark, 1993; Bennetts et al., 1999; Kalichman & Nachimson, 1999), and substance use (Latkin et al., 2001; Marks & Crepaz, 2001; Reback, Larkins, & Shoptaw, 2003). Personal guidelines may inform the approach of PLWHA (People living with HIV/ AIDS) to disclosing to sex partners (Rutledge, 2009). HIV disclosure may be moti- vated by a variety of factors, such as relief (Derlega, Winstead, Greene, Serovich, & Elwood, 2004), a duty to inform others (Derlega et al., 2004; Serovich & Mosack, 2003), a supportive relationship or sense of similarity with the disclosee, a need for honesty, health concerns (Derlega et al., 2004), and a sense of responsibility (Der- lega, Lovejoy, & Winstead, 1998; Larkins, Reback, Shoptaw, & Veniegas, 2005; Parsons, VanOra, Missildine, Purcell, & Gomez, 2004; Serovich & Mosack, 2003; Simoni et al., 1995; Wolitski, Bailey, O’Leary, Gomez, & Parsons, 2003), as well as state laws and legal issues related to disclosure to sex partners (Horvath, Weinmeyer, & Rosser, 2011; Symington, 2009).

Some studies have found that condoms are more likely to be used after disclo- sure of an HIV-positive status prior to sex (De Rosa & Marks, 1998; Kalichman & Nachimson, 1999). Disclosure to HIV-negative partners was more likely to result in safer sex practices than was disclosure to HIV-infected partners (De Rosa & Marks, 1998; Kippax et al., 1997; Marks et al., 1992; Schnell et al., 1992; Wenger, Kussel- ing, Beck, & Shapiro, 1994; Wolitski et al., 1998). Using mathematical modeling, Pinkerton and Galletly (2007) estimate that serostatus disclosure to sexual partners has the potential to decrease HIV transmission by 17.9% to 40.6% when com- pared to not disclosing. Still, other studies have found little or no direct correlation between disclosure and safer sex practices (Crepaz & Marks, 2003; Kalichman & Nachimson, 1999; Marks & Crepaz, 2001; Parsons et al., 2004; Sullivan, Voss, & Li, 2010; Wolitski et al., 1998).

Disclosure to other persons besides sex partners also involves a set of competing and intersecting interpersonal, psychological, and social issues (Kalichman, DiMarco, Austin, Luke, & DiFonzo, 2003; Mayfield Arnold et al., 2008; Stempel, Moulton, & Moss, 1995). Disclosure has the potential to positively impact well-being and health outcomes, given that PLWHA who report higher levels of disclosure to family also report higher levels of medication adherence (Stirratt et al., 2006). Social support may be a correlate and an outcome of disclosure. Individuals who disclose may be more likely to perceive greater social support (Perry et al., 1994; Serovich, Brucker,

HELPING PATIENTS TALK ABOUT HIV 181

& Kimberly, 2000; Zea, Reisen, Poppen, Bianchi, & Echeverry, 2005). Studies have produced intriguing findings about the interactions of disclosure to family, social support, and immune function (Fekete et al., 2009). However, disclosure may also be a source of stress, particularly if it results in negative consequences or involves re- vealing potentially stigmatized behaviors, such as homosexuality (Relf et al., 2009). Individuals who report feeling shame or stigma related to their HIV serostatus are less likely to disclose (Derlega et al., 2002), especially to casual partners (Serovich & Mosack, 2003). Depression, poor adherence, and serostatus disclosure have been found to be independently correlated with HIV-related stigma (Vanable, Carey, Blair, & Littlewood, 2006).

HIV PREVENTION WITH POSITIVES INTERVENTIONS IN CLINICAL SETTINGS

In 2003, the Centers for Disease Control and Prevention (CDC) issued guide- lines about the integration of HIV prevention counseling into the clinical care of persons living with HIV (CDC, 2003). The guidelines provided general recommen- dations for primary care providers, including that they counsel patients on disclo- sure of serostatus to their sex and drug partners. Subsequent to the issue of the guidelines, the Health Resources and Services Administration (HRSA), through the Special Projects of National Significance (SPNS), funded 15 different demonstration projects throughout the United States to design and implement PwP interventions in medical settings.

The main goal of the PwP interventions was to help patients reduce risky behav- iors in order to avert new infections. The projects developed unique interventions tailored to their patient populations and clinical settings. Most of the interventions were based on stages of change theory (Prochaska, DiClemente, & Norcross, 1992). Some also integrated motivational interviewing, social cognitive theory, harm reduc- tion, and theory of gender and power. Some interventions were based on or incor- porated elements from PwP interventions, such as “Coping and Safer Sex Mainte- nance Intervention for Men and Women Living with HIV-AIDS” (Kalichman et al., 2001), “Project Inspire” (Purcell et al., 2004), and other PwP interventions designed for medical settings, such as “Partnership for Health” (Richardson et al., 2004). Interventions varied in content, focus, and dose, and differed according to mode of delivery, whether group level intervention (GLI) or individual level intervention (ILI). They were delivered either by medical providers (medical doctors, nurse prac- titioners, or physician assistants), specialists (health educators, peers, or social work- ers), or medical providers plus specialists. Each intervention had different eligibility criteria for patients to participate.

Disclosure of serostatus as a topic was an explicit component of most of the in- terventions but was operationalized differently by each intervention. For example, in peer-delivered ILI, disclosure was included in an HIV communication module, and a specialist-delivered GLI included a session on disclosure skills. In medical provider- delivered interventions, disclosure was included in a computer-based risk assessment completed by patients prior to prevention conversations initiated by their medical providers (see Table 1 for the type of intervention, mode of delivery, and goals of disclosure as included in their curricula). Depending on the intervention, disclosure was addressed with all participating patients or was a topic to be discussed accord- ing to patients’ need or choice.

HRSA also funded the University of California, San Francisco (UCSF), to con- duct a quantitative and qualitative multi-site evaluation of the PwP interventions.

182 MAIORANA ET AL.

TABLE 1. Location of the HRSA PwP Demonstration Sites, Type and Mode of Delivery of the Interventions, and Goals of Disclosure as Included in the Curriculum of the Interventions

Site Intervention Type/ Mode of Delivery

Goals of Disclosure as Included in the Intervention Curriculum

Baltimore Individual Level Intervention (ILI), medical providerst

Assess disclosure to main and casual partners and deliver mes- sages according to stage of change (providing information, discussing impact of behavior on others, pros and cons of disclosure, perceived barriers to disclosure, or developing a plan for disclosure).

Birmingham ILI, medical providers Explore disclosure according to pre-written stage-matched scenarios of target behavior (providing information, increasing awareness, discussing personal values, impact of behavior on others, pros and cons of disclosure, perceived barriers to disclo- sure, protected sex as an alternative to disclosure, developing a plan for disclosure).

Tucson Group Level Intervention (GLI), health educators

Explore disclosure as a stressor using a disclosure continuum to different persons. Examine thoughts and feelings related to disclosure. Assess how to disclose to different people, includ- ing communication skills, decision making, and barriers and facilitators.

Seattle Combination of ILI (social worker) and GLI (with peer as co-facilitator)

Explore concordance or discordance between personal values and behaviors. Understand the impact of behaviors on oneself and others. Examine the relationship of disclosure with preven- tion of HIV transmission and the issue of responsibility related to safe behaviors.

Chicago ILI, peers Review experiences and past decisions (including fear, stigma, trust, financial consequences) around disclosure. Discuss benefits and challenges to disclose and safety concerns. Learn basic communication techniques to disclose to sexual partners and others.

Boston ILI, peers Assess disclosure and review experiences of disclosure. Discuss pros and cons of disclosure using a decisional matrix, when, how, and whom to disclose to. Develop skill building and strat- egies for evaluating thoughts and feelings related to disclosure.

Miami GLI, peers Identify barriers to disclosure, enhance interpersonal disclosure skills and negotiation skills. Frame sense of responsibility related to disclosure and reduction of HIV transmission.

Philadelphia Combination of ILI (medical providers) and GLI (health educator and peers)

Examine pros and cons of disclosure and positive and negative experiences associated with disclosure. Examine and develop communication skills around disclosure and disclosure situa- tions, including reactions and safety related to disclosing.

De Kalb Health educator Explore and assess disclosure experiences, perceived need to disclose, and fears and barriers related to disclosure. Discuss disclosure strategies.

Chapel Hill ILI, social worker Review past and current experiences of disclosure. Identify thoughts and feelings associated with disclosure as they relate to issues such as self-esteem, stigma, and responsibility, and sex partners’ right to know. Discuss pros and cons of disclosure and use role-plays to identify methods and steps for disclosure.

Washington, D.C. ILI, health educators Disclosure to partners assessed as part of the patient’s risk behaviors. No other information on disclosure described in intervention materials.

San Diego ILI, health educator Discuss disclosure scenarios. Identify and practice disclosure strategies using role-play scenarios. Build self-efficacy and explore sense of responsibility related to disclosure. Introduce Partner Counseling and Referral Services.

Davis, California ILI, medical providers and health educator

Risk Diagnostic Questionnaire completed by patient prompts brief message delivered by medical provider and referral to health educator for more extended prevention counseling.

HELPING PATIENTS TALK ABOUT HIV 183

For a description of the PwP initiative and the interventions see Myers & Morin (2007). In this paper, we examine patients’ self-reports regarding the disclosure mes- sages they received as part of those PwP interventions. The issues related to disclo- sure are broadly defined in the literature, but how disclosure may be integrated into PwP interventions in medical settings has not been well examined. Our goal is to explore what themes related to disclosure were relevant to patients in order to un- derstand how disclosure may be addressed in future PwP interventions.

METHODS

This analysis is based on qualitative data collected during the UCSF evaluation through 52 in-depth interviews with patients in the 13 PwP interventions, which explicitly included disclosure in their curricula. Our purpose was to understand the patients’ response to participating in a PwP intervention in a medical setting. Four patient interviews were conducted in each of the 13 settings. Patients were inter- viewed over a 10-month time period in 2006.

SAMPLING AND RECRUITMENT Staff at the demonstration sites recruited patients for the interviews. This ap-

proach is frequently utilized when researchers are unable to directly conduct recruit- ment activities (Patton, 2002). We asked staff at the sites to purposefully sample patients who reflected clinic demographics (including age, race/ethnicity, gender, and sexual orientation) and could talk to us about their range of experiences participating in the interventions. To maximize the diversity of our sample, at sites implementing GLIs we asked to interview patients who had participated in different intervention groups. At sites with more than one interventionist, we asked to interview patients who had met with different interventionists.

PROCEDURES Three UCSF researchers who also comprised the analysis team conducted the

interviews using semi-structured interview guides. Interview questions explored pa- tients’ reactions and experiences with the intervention, including disclosure. Patients provided informed consent before participating in the interviews and were reim- bursed for their time with a $25 gift card. Interviews were audio-recorded. The UCSF Institutional Review Board approved the study.

ANALYSIS All interviews were transcribed and organized using ATLAS.ti, a qualitative

analysis software program. Each of the analysts read and assigned thematic codes to a subset of interviews. In subsequent meetings, the analysts reached agreement on a set of preliminary codes. Consequently, they divided the remaining data be- tween dyadic teams consisting of a primary coder and a secondary reader. They met biweekly over 6 months to review the coded interviews, refine code definitions, rec- oncile coding discrepancies, compare and contrast data, and discuss salient themes. The thematic classifications used in this paper were based on a priori issues (such as those included in the interview guides) as well as on salient issues arising during data collection and analysis. All data assigned the label “disclosure” and “what did the intervention do for you” were extracted, read and re-read, compared, and con- trasted to identify convergent and divergent explanations of disclosure experiences

184 MAIORANA ET AL.

across interventions. After careful review of the data excerpts, the analysts returned to the original interviews to review the context in which these discussions arose.

FINDINGS

Our findings are organized to present themes related to the disclosure part of the interventions that the patients felt were relevant to their experience and may have influenced their intention to disclose or their disclosure practices. We discuss how the opportunity to reflect about living with HIV, develop strategies to disclose, ex- plore fears of rejection, and develop a sense of responsibility were themes that influ- enced patients’ intention to disclose and their disclosure practices. The findings also include a couple of instances where the interventions may not have been adequate enough to influence patients’ disclosure.

PWP INTERVENTIONS AS A CONEXT TO FACILITATE INTROSPECTION AND DISCLOSURE

The interventions included disclosure strategies and communication skills to help patients to feel more able to consider disclosing. The computer-based risk as- sessments completed by patients before their appointments with their medical pro- viders allowed both providers and patients to feel more comfortable talking about prevention issues. The interventions also provided an opportunity to examine per- sonal issues. Whether by talking to the interventionists, or also learning about other patients’ experiences when participating in GLIs, the interventions provided patients with a chance for introspection and reflection as well as a chance to share their expe- riences about living with HIV. For some patients, this was the first time they talked about HIV prevention and discussed the issues, feelings, and challenges they con- front as PLWHA, including disclosure. For one African American heterosexual man, the intervention helped him to normalize living with HIV and to change his perspec- tive on disclosure, instead of feeling that his HIV status was “nobody’s business” or something for him to deny. An African American heterosexual woman stated, “It’s helped me be more open about it…what they’ve done for me is like I’m living with it and you can’t tell me I’m sick…It’s helped me to be more open” (specialist and medical provider-delivered, mixed ILI, and GLI). Another patient, a Caucasian gay man, said:

it was almost like going inside my head…I guess I think about it a little more before acting…I try to consider what I’m doing rather than react and do what my first com- pulsion is to do…just to…hook up with someone on the spur of the moment without considering some other things, like…should I be telling them I’m positive. (specialist- delivered ILI)

DISCLOSURE AS THE RELIEF OF UNBURDENING A SECRET The interventions included discussions about stigma, shame of being HIV-in-

fected, and fears of rejection related to disclosure. A Latino gay man, when asked about the most relevant aspect of the intervention, stated, “Discussing your status… with anyone, and discussing it with a potential partner that’s not positive…cutting down all the shame and the fears of having to disclose” (specialist-delivered GLI). An African American gay man described disclosing for the first time to a sexual partner as a consequence of the intervention:

HELPING PATIENTS TALK ABOUT HIV 185

I believe that secrets hold you hostage and you become enslaved to them. …the more I’m honest and the more chances I’m given to be honest I take them…I don’t want to be prisoner to the secret. [Name of project]. It definitely will make me think about disclos- ing prior to engaging in a sexual encounter…in the past, I’m like “Whoa, you know I’ll just make sure I’ll do everything safe and they’ll be no need for me to disclose.” Since being in the project, it’s really taught me the importance of disclosure and how I can do it without panicking, pretty much. As soon as I started the project I started dating a guy. And it’s the first guy that I’ve ever disclosed to…prior to engaging in any…I knew we were getting to that point where we were going to be physical…I was able to say, “There’s something I need to tell you.” And that was huge for me. And he dealt with it very well, so I was very fortunate that my first time, it didn’t involve rejection directly. Later on there were some issues, but it gave me the courage to be able to do it a lot easier. (specialist-delivered ILI)

A Latino heterosexual man reported not to be concerned about disclosing to anyone, except his relatives. He had not disclosed to them because of his fear that they would think he was gay. The quote below illustrates the lack of disclosure to his relatives as a stressor and how the intervention influenced his intention to disclose:

Interventionist (I): What is the biggest stressor that you experience because of being HIV positive?

Patient (P): Disclosure. A lot of people in my family do not know that I’m HIV posi- tive.

I: Did you guys talk about disclosure?

P: All the time. If it wasn’t for the group, I probably would never have told my ex-wife.

I: But what about your family?

P: I think it’s because I’m a little more embarrassed and, we did talk about it in our group…“They’re not gonna love you any less” and it’s true, they’re not…I…feel bad is that I’ve hid it from them for so long. So, they’ll say…why didn’t you tell us this all these years?

I: And why didn’t you?

P: At first it was the embarrassment, the guilt…for years it’s had the stigma of being a homosexual disease, and it still has for a lot for people…they think oh, you’re a fag… there are other ways of getting it—you could have been a drug user—which I was, but in my mind they’re gonna say I’m homosexual…Because you have this macho thing, a reputation to uphold…peer pressure. But…actually this trip…I’m pretty sure I’m gon- na…tell them...I need to get the weight off of me...Cause I think about it all the time. (specialist-delivered GLI)

For some patients, the intervention did not seem to affect their intention to disclose. For the African American heterosexual woman below, the decision not to disclose, even after the intervention, may have been based on her concern about anticipated discrimination and rejection:

P: Everybody don’t need to know your business…that you’re HIV positive.

I: So people don’t know?

P: Nobody. My father don’t even know. So nobody knows but my mother. And she been [sic] knowing all the time. [Being HIV+] You’re already an outcast. Because you [sic] sick…I just mind my business, take my medicine. I got friends, but we don’t discuss this, you know. We discuss regular stuff…We have a drink together. But never this. And I never will. It’s my disease.

186 MAIORANA ET AL.

I: Well what do you think would happen if you told your friends?

P: I don’t even think about it, because I ain’t going to do it. I’m telling you the truth. I ain’t even going to think about it because I ain’t going to do it. (specialist-delivered ILI)

For her, the intervention did not seem to have been powerful enough to alter her per- ceptions of stigma, being an outcast because of HIV, and the implicit fear of disclos- ing. In her case, other personal issues and community norms or societal forces may have been at play to trump the potential effect of the intervention on disclosure.

DISCLOSURE AND RESPONSIBILITY One strategy used by the interventions was to encourage patients to feel re-

sponsible for disclosing their status. The interventions tried to develop a sense of responsibility among patients to be honest and discuss their HIV status with poten- tial partners. PwP messages were nested in the need for patients to protect others from HIV and in the need to protect themselves from other STDs and HIV super- infection. While the emphasis on responsibility varied according to the interven- tion and also may have fluctuated depending on the interventionist, the following examples suggest that the message resonated with patients. A Caucasian gay man recalled how his doctor lectured him on the importance of disclosing to his partners and having protected sex by saying, “It’s your life, but don’t take someone else with it.” For the African American heterosexual woman below, the discussions with the interventionist made her reflect on her responsibility to give her partners the option she did not have:

My ex-husband infected me…he took away a lot of my rights…Because he didn’t tell me. And I feel that because of that…I have a responsibility to let other people know and to be responsible for my own actions…If it hadn’t been for [name of interventionist], I never would have even thought about it, went on doing my own thing and said, you know, “Pfffsst, so what…He doesn’t care, I don’t care. What’s the point.” (specialist- delivered ILI)

For a Latino gay man, the scenarios presented in a GLI facilitated what he perceived as an unprecedented level of openness and sharing among the patients in the group. The intervention helped him think he did not want to be like the HIV-infected person portrayed in the scenarios who was not open with his partners. He stated that, “as a carrier, already I have a responsibility to share my status in order to protect others and not to be like John Doe.”

For some patients, the responsibility to disclose when having safer sex, particu- larly in instances of casual sex, were more blurred. A gay patient of Middle Eastern origin believed that disclosing was not necessary if having safer sex. In his case, he did not want to worry about who knew or would tell other men about his HIV sta- tus in a city with a small gay community. An African American gay man stated that he deflected the issue when asked why he wanted to use condoms:

Definitely use the condom…If they try to say something “Oh no, I won’t do it like that.” Because some people say, “Do you swallow?” No, I don’t swallow…It is too dangerous, hell no. Put a condom on. And…that would be the end of the discussion…I’m protecting myself. My doctor trained me to protect myself from any sexually transmitted disease or being reinfected in [sic] HIV…So I look for my welfare first…Then…it all falls back to where you’re protected as well…If I protect myself, then you [are] protected. (mixed specialist and medical provider-delivered ILI)

HELPING PATIENTS TALK ABOUT HIV 187

In the case of the patient above, the implicit responsibility to protect himself from other STDs and super-infection with HIV also indirectly translates into protecting others even if disclosure does not take place. On the other hand, the quotation below illustrates the potential tension regarding how a disclosure message is delivered and how it is understood by a patient:

I: Let’s see, I know you talked a little bit about disclosure. Is that something that they have talked to you in the clinic about?

P: Yes, very much so. And that’s why I said I thought that I had done something [wrong] by being with someone that I didn’t disclose with…And like I said, when I mentioned it, and I got a spanking on the hands, and then they told me, “well, you know, it’s not fair to…the other person if you do not disclose.” Even though they might not be directly at risk, but you don’t know…So, that’s why it’s more important to be able to disclose than to keep the secret…So the study has been good for me to be able to disclose…They want you to be safe and just disclose, if it’s possible…You have to be safe all the time…And I didn’t realize that you should disclose and be safe. I felt that I could be safe and not disclose…So I got better about disclosing. So, disclosure is really important, today, for me…And then the protected part. (African American transgender male to female, medi- cal provider-delivered intervention)

Reflecting on the patients’ statements above, PwP interventions may need to avoid disclosure messages that may be understood as a mandate. While fostering patients’ responsibility to protect their sexual partners, messages need to provide patients with the tools to assess whether it is necessary and realistic to disclose to those sexual partners. That could be the case, for example, in situations in which disclo- sure may not be an option for some women because of the potential for violence, or in gay bath houses where, if having casual but protected sex, disclosing may not be realistic.

DISCLOSURE AS A PROCESS The interventions provided patients with the skills to deal with the moment of

disclosure. A few patients, however, explicitly talked about disclosure as a process that included assessing their own readiness to disclose, the other person’s prepared- ness to learn their status, and the potential situations post-disclosure. For them, considering those potential situations post-disclosure was as important as the actual moment of disclosure. A Caucasian gay man referred to that post-disclosure process as follows:

Yeah, it’s definitely ongoing. Whether it’s with friends or family or romantic partner, especially when sex is involved because you know someone may say “Okay, you know, that’s fine. You know, we’ll just, you know, we’ll practice safe sex. Everything’s going to be great.” But once you consummate that relationship by bringing sex into it…it… becomes real because a lot of times people start thinking, “Whoa, every time I have sex I’m increasing my risk of maybe—you know, what if a condom breaks.” (specialist- delivered ILI)

Another Caucasian gay man liked that the intervention respected patients at the point they were, in terms of disclosing, without a programmatic bias to disclose “early and often kind of drum beat.” Nevertheless, he pointed out that the interven- tion needed to do more to better prepare patients to see disclosure as a process and to deal with the potential consequences that disclosure could bring to a relationship,

188 MAIORANA ET AL.

such as the subtle ways through which someone might express their love, support, rejection, or fear toward the person disclosing:

[M]y biggest beef was this idea that disclosure was viewed as a moment. Like a clumsy, social, you know, spilling soup on your shirt, how do you get through that moment, and to me that’s perhaps somewhat helpful, but in my experience…most people are…politi- cally correct enough not to go running away with their hair on fire, going leper, leper. Most people are like, “Oh, that’s cool.” And it’s the aftermath of the moment…there is lot of anxiety leading up to it, and I think the program dealt well with helping people understand what are all those feelings that are coursing around as they’re getting to that moment. But it can be weeks or months before the impact of that disclosure manifests itself in a meaningful way, and there was no discussion about how to deal with that. (specialist-delivered GLI)

Thus, PwP interventions need to frame disclosure as a process and prepare patients on how to deal with the post-disclosure situations they will encounter in different circumstances through their lives.

DISCUSSION

According to our findings, the opportunity to develop communication skills and strategies to disclose, reflect about living with HIV, explore fears of rejection, and explore a sense of responsibility were topics that influenced patients’ intention to disclose and their disclosure practices. Consistent with the reciprocal relationship among stigma, social support, and disclosure reported by Obermeyer, Baijal, and Pe- gurri (2011), our findings also suggest that the intervention pathways that influenced disclosure were related to providing patients with an opportunity for introspection, increased support, discussing stigma, and developing skills to disclose.

In this article, we have presented patients’ self-reports in order to shed light on their actual experience with PwP topics related to disclosure. Understanding which themes related to disclosure are relevant to patients also may help guide how dis- closure is addressed in future PwP interventions. While we cannot establish whether patients who disclosed their HIV status as a result of participating in the interven- tions engaged in less risky behaviors with their partners, the interventions may have worked as a prevention strategy. Our findings suggest that the interventions provided tools for patients to feel more at ease disclosing and communicating with sex part- ners about sexual risk. The influence of the interventions on disclosure correspond to quantitative findings reported elsewhere (Myers et al., 2010) that these PwP inter- ventions helped produce a shift in patients’ risk towards safer sex practices.

Disclosure as it relates to sexual risk must be understood in relation to other in- dividual and contextual factors, such as partner serostatus, the nature of the sexual encounter, interpretations of sexual risk, and the ability and willingness to negoti- ate safer sex, as well as community norms and stigma. Practices such as serosorting (Snowden, Raymond, & McFarland, 2011) and perceptions about reduced infec- tivity associated with viral load suppression (Kalichman et al., 2001; Suarez et al., 2001) may influence the likelihood that patients will disclose. Disclosure to family or friends as a consequence of PwP may be important as a prevention strategy and for patients’ overall well-being. The support from anyone that patients disclose to may lead to better health outcomes, enhanced self-esteem, and a reduction in stigma and

HELPING PATIENTS TALK ABOUT HIV 189

could encourage those patients to also consider disclosing to sex partners. Further research that takes into account the themes we identified in our study and considers the complexity of disclosure is needed to better examine the benefits of disclosure for HIV-infected individuals, including their reduction of sexual risk. The Disclosure Processes Model proposed by Chaudoir, Fisher and Simoni (2011) to examine dis- closure includes: (1) antecedent goals that affect disclosure (decision-making process regarding the positive or negative consequences of disclosure); (2) the moment of disclosure; (3) mediating factors (alleviation of the personal negative consequences of not disclosing, social support, changes in self, and others’ perceptions and behav- iors due to disclosure); (4) long-term individual, dyadic, and contextual outcomes; and (5) a feedback loop that will influence future disclosure according to the out- come of disclosing events. We believe that such a theoretical model may provide the appropriate framework for such research.

LIMITATIONS The patients’ assertions of their intention to disclose or disclosure practices are

self-reports. We cannot generalize from our findings. The participants’ responses dur- ing the interviews and the recruitment of the purposeful sample by local staff could reflect a degree of social desirability, with both the participants and the staff trying to impress the evaluators (Babbie, 2009). The diversity of participants included in the sample, however, and their diversity of opinions about the interventions do not seem to support that fact. We cannot state that disclosure messages directly impacted patients’ HIV risk reduction strategies, but infer that those messages influenced their ability to disclose, communicate with their sex partners, and negotiate safer sex. It is beyond our analysis to identify differences among the intervention models or es- tablish the specific mechanisms by which each intervention influenced particular pa- tients or specific patient populations. Our data did not contain information related to drug use or disclosing when sharing needles with drug partners.

CONCLUSIONS HIV patients’ disclosure of their seropositive status to their sexual partners does

not guarantee transmission risk reduction. However, PwP interventions that inte- grate disclosure and explore issues related to normalizing living with HIV, stigma, and responsibility to others may increase patients’ self-efficacy to disclose, decrease risk behaviors, and help avert new HIV infections.

REFERENCES

Armistead, L., Morse, E., Forehand, R., Morse, P., & Clark, L. (1993). African-American women and self-disclosure of HIV-infec- tion: Rates, predictors, and relationship to depressive symptomatology. AIDS & Be- havior, 3, 195-204.

Babbie, E. (2009). The practice of social research (12th ed.). Belmont, CA: Wadsworth.

Bachmann, L. H., Grimley, D. M., Chen, H., Aban, I., Hu, J., Zhang, S., et al. (2009). Risk be- haviours in HIV-positive men who have sex with men participating in an intervention in

a primary care setting. International Jour- nal of STD & AIDS, 20(9), 607-612.

Bennetts, A., Shaffer, N., Manopaiboon, C., Chai- yakul, P., Siriwasin, W., Mock, P., et al. (1999). Determinants of depression and HIV-related worry among HIV-positive women who have recently given birth, Bangkok, Thailand. Social Science and Medicine, 49(6), 737-749.

Buchanan, D. R., Poppen, P. J., & Reisen, C. A. (1996). The nature of partner relationship and AIDS sexual risk-taking in gay men. Psychology and Health, 11, 541-555.

190 MAIORANA ET AL.

Carballo-Dieguez, A., Remien, R. H., Dolezal, C., & Wagner, G. (1997). Unsafe sex in the primary relationships of Puerto Rican men who have sex with men. AIDS and Behav- ior, 1, 9-17.

Centers for Disease Control (CDC). (2003). Incor- porating HIV prevention into the medical care of persons living with HIV. Recom- mendations of CDC, the Health Resources and Services Administration, the National Institutes of Health, and the HIV Medicine Association of the Infectious Diseases So- ciety of America. Morbidity and Mortality Weekly Report, Recommendations and Re- ports, 52(RR-12), 1-24.

Chaudoir, S. R., Fisher, J. D., & Simoni, J. M. (2011). Understanding HIV disclosure: A review and application of the Disclosure Processes Model. Social Science and Medi- cine, 72(10), 1618-1629.

Ciccarone, D. H., Kanouse, D. E., Collins, R. L., Miu, A., Chen, J. L., Morton, S. C., et al. (2003). Sex without disclosure of positive HIV serostatus in a US probability sample of persons receiving medical care for HIV infection. American Journal of Public Health, 93(6), 949-954.

Crepaz, N., & Marks, G. (2003). Serostatus dis- closure, sexual communication and safer sex in HIV-positive men. AIDS Care, 15(3), 379-387.

Cusick, L., & Rhodes, T. (1999). The process of disclosing positive HIV status: Findings from qualitative research. Culture, Health & Sexuality, 1(1), 3-18.

De Rosa, C. J., & Marks, G. (1998). Preventive counseling of HIV-positive men and self- disclosure of serostatus to sex partners: New opportunities for prevention. Health Psychology, 17(3), 224-231.

Derlega, V. J., Lovejoy, D., & Winstead, B. A. (1998). Personal accounts of disclosing and concealing HIV-positive test results: Weigh- ing the benefits and risks. In V. Derlega & A. Barbee (Eds.), HIV & social interaction (pp. 147-164). Thousand Oaks, CA: Sage.

Derlega, V. J., Winstead, B. A., Greene, K., Se- rovich, J., & Elwood, W. N. (2002). Per- ceived HIV-related stigma and HIV disclo- sure to relationship partners after finding out about the seropositive diagnosis. Health Psychology, 7(4), 415-432.

Derlega, V. J., Winstead, B. A., Greene, K., Se- rovich, J., & Elwood, W. N. (2004). Rea- sons for HIV disclosure/nondisclosure in close relationships: Testing a model of HIV-disclosure decision making. Journal of Social and Clinical Psychology, 23(6), 747-767.

Duru, O. K., Collins, R. L., Ciccarone, D. H., Morton, S. C., Stall, R., Beckman, R., et al. (2006). Correlates of sex without serosta-

tus disclosure among a national probability sample of HIV patients. AIDS & Behavior, 10(5), 495-507.

Fekete, E. M., Antoni, M. H., Lopez, C. R., Duran, R. E., Penedo, F. J., Bandiera, F. C., et al. (2009). Men’s serostatus disclosure to par- ents: Associations among social support, ethnicity, and disease status in men living with HIV. Brain, Behavior, and Immunity, 23(5), 693-699.

Horvath, K. J., Weinmeyer, R., & Rosser, S. (2011). Should it be illegal for HIV-positive persons to have unprotected sex without disclosure? An examination of attitudes among US men who have sex with men and the impact of state law. AIDS Care, 22(10), 1221-1228.

Kalichman, S. C., DiMarco, M., Austin, J., Luke, W., & DiFonzo, K. (2003). Stress, social support, and HIV-status disclosure to fami- ly and friends among HIV-positive men and women. Journal of Behavioral Medicine, 26(4), 315-332.

Kalichman, S. C., & Nachimson, D. (1999). Self- efficacy and disclosure of HIV-positive se- rostatus to sex partners. Health Psychol- ogy, 18(3), 281-287.

Kalichman, S. C., Rompa, D., Cage, M., DiFonzo, K., Simpson, D., Austin, J., et al. (2001). Ef- fectiveness of an intervention to reduce HIV transmission risks in HIV-positive people. American Journal of Preventive Medicine, 21(2), 84-92.

Kippax, S., Noble, J., Prestage, G., Crawford, J. M., Campbell, D., Baxter, D., et al. (1997). Sexual negotiation in the AIDS era: Ne- gotiated safety revisited. AIDS, 11(2), 191-197.

Larkins, S., Reback, C. J., Shoptaw, S., & Venie- gas, R. (2005). Methamphetamine-depen- dent gay men’s disclosure of their HIV sta- tus to sexual partners. AIDS Care, 17(4), 521-532.

Latkin, C., Knowlton, A., Forman, V., Hoover, D., Schroeder, J., Hackey, M., et al. (2001). In- jection drug users’ disclosure of HIV sero- positive status to network members. AIDS & Behavior, 5(4), 297-305.

Mansergh, G., Marks, G., & Simoni, J. M. (1995). Self-disclosure of HIV infection among men who vary in time since seropositive diag- nosis and symptomatic status. AIDS, 9(6), 639-644.

Marks, G., Bundek, N. I., Richardson, J. L., Ruiz, M. S., Maldonado, N., & Mason, H. R. (1992). Self-disclosure of HIV infec- tion: Preliminary results from a sample of Hispanic men. Health Psychology, 11(5), 300-306.

Marks, G., & Crepaz, N. (2001). HIV-positive men’s sexual practices in the context of self-disclosure of HIV status. Journal of

HELPING PATIENTS TALK ABOUT HIV 191

Acquired Immune Deficiency Syndromes, 27(1), 79-85.

Mason, H. R., Marks, G., Simoni, J. M., Ruiz, M. S., & Richardson, J. L. (1995). Culturally sanctioned secrets? Latino men’s nondisclo- sure of HIV infection to family, friends, and lovers. Health Psychology, 14(1), 6-12.

Mayfield Arnold, E., Rice, E., Flannery, D., & Ro- theram-Borus, M. J. (2008). HIV disclosure among adults living with HIV. AIDS Care, 20(1), 80-92.

Myers, J. J., & Morin, S. (Guest editors). (2007). HIV prevention with HIV-infected persons seen in primary care settings: Implementa- tion of the Health Resources and Services Administration (HRSA)’s Special Projects of National Significance Initiative. AIDS & Behavior, 11(5 Suppl.).

Myers, J. J., Shade, S. B., Rose, C. D., Koester, K., Maiorana, A., Malitz, F. E., et al. (2010). Interventions delivered in clinical settings are effective in reducing risk of HIV trans- mission among people living with HIV: Re- sults from the Health Resources and Servic- es Administration (HRSA)’s Special Projects of National Significance initiative. AIDS & Behavior, 14(3), 483-492. doi: 10.1007/ s10461-010-9679-y

Obermeyer, C., Baijal, P., & Pegurri, E. (2011). Fa- cilitating HIV disclosure across diverse set- tings: A review. American Journal of Public Health, 101(6), 1011-1023.

Parsons, J. T., VanOra, J., Missildine, W., Purcell, D. W., & Gomez, C. A. (2004). Positive and negative consequences of HIV disclo- sure among seropositive injection drug us- ers. AIDS Education and Prevention, 16(5), 459-475.

Patton, M. Q. (2002). Qualitative evaluation and research methods (3rd ed.). Thousand Oaks, CA: Sage.

Perry, S. W., Card, C. A., Moffatt, M., Jr., Ashman, T., Fishman, B., & Jacobsberg, L. B. (1994). Self-disclosure of HIV infection to sexual partners after repeated counseling. AIDS Education and Prevention, 6(5), 403-411.

Pinkerton, S. D., & Galletly, C. L. (2007). Reduc- ing HIV transmission risk by increasing serostatus disclosure: A mathematical mod- eling analysis. AIDS & Behavior, 11(5), 698-705.

Poppen, P. J., Reisen, C. A., Zea, M. C., Bianchi, F. T., & Echeverry, J. J. (2005). Serostatus disclosure, seroconcordance, partner rela- tionship, and unprotected anal intercourse among HIV-positive Latino men who have sex with men. AIDS Education and Preven- tion, 17(3), 227-237.

Prochaska, J. O., DiClemente, C. C., & Norcross, J. C. (1992). In search of how people change. Applications to addictive behaviors. Ameri- can Psychologist, 47(9), 1102-1114.

Purcell, D. W., Metsch, L. R., Latka, M., San- tibanez, S., Gomez, C. A., Eldred, L., et al. (2004). Interventions for seropositive injec- tors-research and evaluation: An integrated behavioral intervention with HIV-positive injection drug users to address medical care, adherence, and risk reduction. Journal of Acquired Immune Deficiency Syndromes, 37(Suppl. 2), S110-118.

Reback, C. J., Larkins, S., & Shoptaw, S. (2003). Methamphetamine abuse as a barrier to HIV medication adherence among gay and bisexual men. AIDS Care, 15(6), 775-785.

Relf, M. V., Bishop, T. L., Lachat, M. F., Schia- vone, D. B., Pawlowski, L., Bialko, M. F., et al. (2009). A qualitative analysis of partner selection, HIV serostatus disclosure, and sexual behaviors among HIV-positive ur- ban men. AIDS Education and Prevention, 21(3), 280-297.

Richardson, J. L., Milam, J., McCutchan, A., Stoy- anoff, S., Bolan, R., Weiss, J., et al. (2004). Effect of brief safer-sex counseling by medi- cal providers to HIV-1 seropositive patients: A multi-clinic assessment. AIDS, 18(8), 1179-1186.

Rutledge, S. E. (2009). Formation of personal HIV disclosure policies among HIV-positive men who have sex with men. AIDS Patient Care and STDs, 23(7), 531-543.

Schnell, D. J., Higgins, D. L., Wilson, R. M., Goldbaum, G., Cohn, D. L., & Wolitski, R. J. (1992). Men’s disclosure of HIV test results to male primary sex partners. American Journal of Public Health, 82(12), 1675-1676.

Serovich, J. M., Brucker, P. S., & Kimberly, J. A. (2000). Barriers to social support for per- sons living with HIV/AIDS. AIDS Care, 12(5), 651-662.

Serovich, J. M., & Mosack, K. E. (2003). Reasons for HIV disclosure or nondisclosure to ca- sual sexual partners. AIDS Education and Prevention, 15(1), 70-80.

Simoni, J. M., Mason, H. R., Marks, G., Ruiz, M. S., Reed, D., & Richardson, J. L. (1995). Women’s self-disclosure of HIV infection: Rates, reasons, and reactions. Journal of Consulting and Clinical Psychology, 63(3), 474-478.

Simoni, J. M., & Pantalone, D. W. (2004). Secrets and safety in the age of AIDS: Does HIV disclosure lead to safer sex? Topics in HIV Medicine, 12(4), 109-118.

Snowden, J. M., Raymond, H. F., & McFarland, W. (2011). Seroadaptive behaviours among men who have sex with men in San Francis- co: The situation in 2008. Sexually Trans- mitted Infections, 87(2), 162-164.

Stein, M. D., Freedberg, K. A., Sullivan, L. M., Savetsky, J., Levenson, S. M., Hingson, R., et al. (1998). Sexual ethics: Disclosure of

192 MAIORANA ET AL.

HIV-positive status to partners. Archives of Internal Medicine, 158(3), 253-257.

Stempel, R. R., Moulton, J. M., & Moss, A. R. (1995). Self-disclosure of HIV-1 antibody test results: The San Francisco General Hos- pital Cohort. AIDS Education and Preven- tion, 7(2), 116-123.

Stirratt, M. J., Remien, R. H., Smith, A., Copeland, O. Q., Dolezal, C., & Krieger, D. (2006). The role of HIV serostatus disclosure in an- tiretroviral medication adherence. AIDS & Behavior, 10(5), 483-493.

Suarez, T. P., Kelly, J. A., Pinkerton, S. D., Ste- venson, Y. L., Hayat, M., Smith, M. D., et al. (2001). Influence of a partner’s HIV se- rostatus, use of highly active antiretroviral therapy, and viral load on perceptions of sexual risk behavior in a community sample of men who have sex with men. Journal of Acquired Immune Deficiency Syndromes, 28(5), 471-477.

Sullivan, K., Voss, J., & Li, D. (2010). Female disclosure of HIV-positive serostatus to sex partners: A two-city study. Women & Health, 50(6), 506-526.

Symington, A. (2009). Criminalization confusion and concerns: The decade since the Cuerrier decision. HIV/AIDS Policy & Law Review, 14(1), 1, 5-10.

Vanable, P. A., Carey, M. P., Blair, D. C., & Little- wood, R. A. (2006). Impact of HIV-related stigma on health behaviors and psychologi- cal adjustment among HIV-positive men

and women. AIDS & Behavior, 10(5), 473-482.

Weinhardt, L. S., Kelly, J. A., Brondino, M. J., Rotheram-Borus, M. J., Kirshenbaum, S. B., Chesney, M. A., et al. (2004). HIV transmission risk behavior among men and women living with HIV in 4 cities in the United States. Journal of Acquired Immune Deficiency Syndromes, 36(5), 1057-1066.

Wenger, N. S., Kusseling, F. S., Beck, K., & Shapiro, M. F. (1994). Sexual behavior of individuals infected with the human immunodeficiency virus. The need for intervention. Archives of Internal Medicine, 154(16), 1849-1854.

Wolitski, R. J., Bailey, C. J., O’Leary, A., Gomez, C. A., & Parsons, J. T. (2003). Self-per- ceived responsibility of HIV-seropositive men who have sex with men for preventing HIV transmission. AIDS & Behavior, 7(4), 363-372.

Wolitski, R. J., Rietmeijer, C. A., Goldbaum, G. M., & Wilson, R. M. (1998). HIV serosta- tus disclosure among gay and bisexual men in four American cities: General patterns and relation to sexual practices. AIDS Care, 10(5), 599-610.

Zea, M. C., Reisen, C. A., Poppen, P. J., Bianchi, F. T., & Echeverry, J. J. (2005). Disclosure of HIV status and psychological well-being among Latino gay and bisexual men. AIDS & Behavior, 9(1), 15-26.