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. Author manuscript; available in PMC: 2019 Dec 26.
Published in final edited form as: Cult Health Sex. 2018 Jun 26;20(10):1117–1129. doi: 10.1080/13691058.2018.1479535

Managing the Risk of Intimacy: Accounts of Disclosure and Responsiveness among People with HIV and Intimate Partners of People with HIV

Helena D Green a,*, Margaret R Weeks a, Marcie Berman a, Heather I Mosher a, Maryann Abbott a, Natalie Garcia a
PMCID: PMC6399062  NIHMSID: NIHMS1514886  PMID: 29944072

Abstract

It is well known that concerns about sexual risk tend to decline among people in intimate relationships where there is established commitment and trust. In the context of relationships at increased risk for HIV transmission, interactions involving disclosure and partner responsiveness are key to maintaining intimacy and physical safety. This article explores concepts of risk and sexual intimacy articulated by a community sample of 30 people living with HIV and their intimate relationship partners. Data revealed the shifts in intimate relationship dynamics upon the disclosure of an HIV diagnosis, the importance of intimacy in the context of managing one or both partners’ HIV care, and responses to new advances in HIV prophylaxis. Findings suggest that participants’ experiences of self-disclosure and partner responsiveness most often resulted in an increased sense of protectiveness from and for partners. This suggests that health-promoting messaging should be adapted to be more relevant to intimate couple communication and mutual support.

Keywords: HIV risk, HIV care, intimacy, couples, USA

Introduction

For most people, initiating and maintaining intimate relationships is a life course expectation. While the general physical, emotional, and psychological benefits of partner intimacy are well-documented (Field 2010; Debrot et al. 2013; Merwin, O’Sullivan and Rosen 2017), there is merit in highlighting these aspects of intimacy among couples in higher risk contexts (Levine 1991; Greene et al. 2014), such as those where there is a risk of HIV transmission. Researchers have found that perceptions of sexual risk can be skewed by the existence of commitment and trust, which are markers of intimate relationships (Starks, Gamarel and Johnson 2014; Stephenson et al. 2015). For example, couples who perceive the disclosure of their HIV status or the management of HIV care as a disruption of intimate interactions are more likely to hide these issues to maintain the relationship (Cusick 1999; McKay and Mutchler 2011).

Intimacy can be conceptualised as an interpersonal process consisting of (1) self-disclosure of feelings and information, and (2) responsiveness to a partner in relation to his or her self-disclosure and needs, which results in (3) increases or decreases in feelings of being understood and cared for (Reis and Shaver 1988; Laurenceau, Barrett and Pietromonaco 1998; Berg 1987). Self-disclosure may be defined as a person’s sharing of sensitive or personal experiences or feelings with others. Partner’s responsiveness is the degree to which the partner’s reaction to this sensitive information leads the discloser to feel understood, cared for, or validated (Manne et al. 2004). Within the context of HIV, where there is risk in disclosing an HIV positive status or when an individual doubts the consistency of their partner’s HIV care management, the disclosure process presents added complexities. For example, the act of partner disclosure is generally known to lead to greater social support (Utz 2015; Sparrevohn and Rapee 2009) which, when suppressed, can lead to negative consequences for the relationship (Montesi et al. 2013). However, if intimacy in a relationship is not mutual the partner’s response to disclosure of HIV status may result in a breakdown of trust and affect whether or not the relationship proceeds (Patrick and Beckenbach 2009). Thus, intimacy occurs when an individual self-discloses HIV status with the belief that the partner is receptive to the disclosure, and the belief is confirmed by the partner’s accepting and supportive behaviour.

A relationship that involves at least one individual with HIV or a partner who engages in behaviours that increase risk of HIV transmission requires an additional layer of disclosure and partner responsiveness that could disrupt the couple’s capacity to maintain the intimacy process (Witte et al. 2010; Fals-Stewart et al. 2003; Nevedal and Sankar 2015). At the same time, however, disclosure may buffer the impact of negative events or experiences in the future (Brawner et al. 2017) such as the HIV diagnosis of a partner, and the ongoing challenges of living with HIV (Amichai-Hamburger and Etgar 2016). When individuals take the risk to disclose, their main interest is likely to be in preserving their relationships with the hope that their partners will respond positively.

There is a significant discrepancy between public health HIV prevention messages that promote individual agency and responsibility for preventing the negative consequences of sexual or drug-related risk behaviours (Bulled 2014; Fraser 2004) and the goals of people in intimate relationships, who characterise sex as a form of interpersonal engagement, intimate communication, and an expression of love, desire, and/or trust (Corbett et al. 2009). Approaches aimed at reducing risk at the individual-level are flawed in that they lack attention to the complexities of interactions within sexual partner communication. For example, HIV prevention messages calling for consistent condom use contrast with the perspective of couples in intimate relationships who make measured choices to take known physical risks (e.g., deciding not to use condoms) in order to protect trust and preserve the integrity of the relationship (Argento et al. 2015; Hubach et al. 2014). Romantic relationships, whether heterosexual or same sex, are embedded within sociocultural and emotional expectations, and possibly reproductive intentions, that present challenges to using condoms or other protective barriers (Argento et al. 2015; Teitelman, Bohinski and Tuttle 2010; Raiford, Seth and DiClemente 2013), or even disclosing a desire to use them. For some individuals, objection to condom use is a strategy to increase intimate communication and trust or strengthen their primary sexual relationships (Gebhardt, Kuyper and Greunsven 2003; Campbell et al. 2014), despite their awareness of the risks (Corbett et al. 2009; Reddy 2011).

Some researchers suggest that sexual behaviour change due to sexual health promotion or the receipt of medical advice has less to do with individual self-efficacy than with the sociocultural context and contextual factors that affect sex and relationships (Cawley et al. 2016). Relational factors also influence individuals to feel at increased risk or to believe that risk is unavoidable because their partners engage in high-risk behaviours. From this perspective, it is more likely that individuals and couples will interpret their risk based on cultural and personal frameworks, rather than responding solely to sexual or other public health messages (Witzel et al. 2017). Thus, intimacy, trust and cultural factors interact in complex ways to influence how partners and couples negotiate risk behaviours such as injection drug use and condomless sex.

The introduction of pre-exposure prophylaxis (PrEP) daily medication for HIV prevention (Biello et al. 2017) and the known reduction in transmission from a partner with undetectable viral load by way of HIV treatment (Chen 2013) have changed the context and definition of “risk” with respect to condomless sexual practices. Yet these technologies do not solve the problem completely, as viral load can vary depending on medication adherence as well as other health problems, and current formulations of PrEP must be taken daily. These new developments in the prevention and treatment of HIV have added further complexity to public health messages for couples inintimate and sexual relationships.

In this article, we explore concepts of risk and sexual intimacy articulated by a community sample of people living with HIV and people who were their intimate relationship partners. We analysed data from in-depth interviews that were part of a larger study to examine people’s interaction with and use of HIV testing and treatment services and their personal support systems to deal with HIV. These data revealed shifts in intimate relationship dynamics upon the disclosure of an HIV diagnosis, the importance of intimacy in the context of managing one or both partners’ HIV care, and responses to new advances in HIV prophylaxis. Our analysis highlights patterns of disclosure and responsiveness in a diverse sample of HIV infected/affected couples to further inform public health prevention efforts for individuals in intimate relationships where one or both partners may be HIV infected.

Methods

Sample

The sample for this analysis came from a community-based study of the HIV test-and-treatment care continuum in Hartford, CT. As part of the larger study, we used adaptive sampling (street outreach plus peer and provider referral) (Thompson 1997) to recruit a cohort of 197 people living with HIV and 56 high-risk uninfected individuals (i.e., individuals who engaged in unprotected sex or had multliple sex partners in the last six months) for repeated surveys in order to follow their interaction with HIV testing and care services and to study the social context of their HIV risk, care utilisation and personal support. A purposive subsample of the same cohort was invited to participate in repeated in-depth interviews to deepen our understanding of the social dynamics of their risk history, personal relationships and interactions with the health professionals during HIV service utilisation. The targeted sampling plan for the interview group (N=30) was designed to be representative of the full cohort by demographic factors such as age group, gender and race/ethnicity, and risk group (men who have sex with men, injecting drug users and heterosexuals). As we recruited interview participants from the cohort survey sample, we continuously monitored the interview sample composition and selected subsequent invitees until the target representation for each group as designated in the purposive sampling plan was achieved. The characteristics of the interview sample are described in Table 1.

Table 1:

Interview sample demographic and risk characteristics (N=30)

TOTAL Black (N=10) Latino (N=13) White/other (N=8)
Age Group: 18-30 31-50 51+ 18-30 31-50 51+ 18-30 31-50 51+
Total 30 1 6* 3 0 10* 3 3 4 1
Male 14 1 3* 1 0 6* 1 2 0 1
Female 14 0 3 1 0 3 2 1 4 0
Trans. 2 0 0 1 0 1 0 0 0 0
HIV+ IDU 8 0 0 0 0 4 2 1 1 0
HIV+ MSM 8 1 1 1 0 3 1 1 0 0
HIV+ Hetero. 8 0 3 1 0 1 0 0 2 1
HIV-neg. with HIV+ partner 6 0 2* 0 0 2* 0 1 1 0

Note. One male participant identified as both Black and Hispanic. We only counted this participant once in the totals. He is marked by the asterisks in the age distribution of the table.

Through the interviews, information participants provided on sexual relationships (e.g., length of the relationship, characteristics of the primary relationship) emerged from questions probing participants’ risk histories from sexual partners and support when learning of their own or their partner’s HIV infection and efforts to stay in care. Although some participants described having more than one partner, we restricted our analysis for this article to intimate relationships with primary partners because these contain elements (i.e., trust, relatively stable expectations, and relational practices) that tend to reveal and foster self-disclosure and supportive responsiveness (Gamarel et al. 2016; Mahoney et al. 2015) and the information on secondary partners tended to be more limited in scope and depth.

Data collection

All the interviews were conducted in our community institute offices using a semi-structured interview guide. The interview protocol was developed based on the research questions of the larger study, which focused on their personal risk histories and exposure to or infection with HIV, testing behaviours of HIV-negative respondents, treatment and medication adherence practices of HIV-positive respondents, and utilisation of HIV-related agencies and supportive services in the community. Information about HIV disclosure and sexual partner responsiveness was obtained through probes related to changes in their sexual relationships after the individual or their partners were diagnosed, and questions related to support after diagnosis and for staying in care and medically adherent. Relevant questions that provided data for these analyses included the following: “Did you have support from anyone during the time when you had just learned that you were HIV-positive?”; Who helped/did not help you during this time?”; “What or who has helped you stay consistent with your medications?”; and “Who are your biggest supports in your life? How do they help you?” The full interview ranged from 30 – 90 minutes and was audio recorded (Gibbs 2015). All participants provided informed consent prior to the start of the interview and received $30 for completion of the interview. The study was reviewed and approved by the Institutional Review Board of the Institute for Community Research.

Data analysis

Audio recordings of the interviews were transcribed verbatim. The first author systematically reviewed each transcript to identify content related to the main theoretical constructs deductively derived from the literature on intimacy (Dey 2003) and extracted quotations related to concepts or processes of self-disclosure, expressions of intimate feelings, and partner responsiveness or lack thereof (Reis and Shaver 1988).

Data were then organised into a matrix comprised of the text segments associated with each theme, personal characteristics of the participant who contributed the text, a brief description of the nature of his or her intimate relationship, and the risk behaviours that occurred in the course of the relationship (Miles, Huberman and Saldana 2014; LeCompte and Schensul 2012). Additional inductive themes emerged through this process of data sorting and analysis related to the main themes in the context of new HIV prevention technologies, including PrEP and antiretroviral treatment as prevention.

Reliability of data reduction, sorting, and analysis by themes was strengthened of review by a second researcher. The first author (HG) conducted the first full review, data organisation, and thematic analysis using a spreadsheet matrix. The third author (MB) then reviewed the data and the quotations in the matrix to affirm the analytical categorisation of quotes and themes used in the analysis. Discrepancies between the two researchers were discussed to achieve consensus regarding the organisation and interpretation of the data.

Findings

Description of primary relationships

Participants described their primary or significant relationships by title (e.g., wife, partner, boyfriend, fiancée); by length of e relationship (e.g., 5 years, ‘over a year’); by both title and length of the relationship (e.g., ‘I have a friend, and…and we been together for 22 years…’); and by other descriptive characteristic (e.g., ‘We’ve been together eight years, been married four years’). While length of the relationship varied from several months to many years, we focused on participants’ qualitative assessment of the relationship’s significance to determine its primacy and degree of intimacy. If participants mentioned more than one relationship, we determined those not primary by their indication that the relationship lacked significance or if they only briefly described it (e.g., ‘This one guy I know, this kid’s father…Yeah, I told him that I got HIV. He never came back.’). Twenty-eight of the interviews described at least one primary intimate relationship.

Themes related to risk and intimacy in primary relationships in the context of HIV

As indicated above, thematic analysis of the data focused on (1) self-disclosure, and (2) partner responsiveness to disclosure and partner needs, which combined into the first overarching theme: namely, self-disclosure and partner responsiveness in the context of HIV risk and infection. Subthemes derived from the data emergent from this theme included: (a) disclosing and sharing risk and disease with intimate partners; (b) taking care of one another; (c) lack of disclosure about HIV and loss of intimacy. A second overarching theme was intimacy in the context of recent HIV prevention developments. Subthemes that emerged from this main theme included: (d) meanings of ‘undetectable viral load’ in intimate partnerships, and (e) meaning of pre-exposure prophylaxis (PrEP) for intimacy.

Self-disclosure and partner responsiveness in the context of HIV risk and infection

Disclosing and sharing risk and disease with intimate partners.

Many participants described how they or their partners disclosed their HIV risk to the other or alternatively, hid this information from each other. Some indicated that they or their partners revealed their behaviour and their HIV status to each other without fear of consequences. One participant described how she found out she had HIV from a required blood test before marriage. She reported her previous partner, prior to her husband, was an HIV ‘carrier’. She described the outcome of disclosing her status to her husband as follows

And the guy that I married, he… I had talked to him about it and everything like that, and he told me, he said I love you, I’m in… I’m in it for the whole haul, you know, and that made me feel real good, and he was a lot of support. (Black female, 58, HIV-positive, heterosexual)

Another participant described a conversation in which his partner’s dismissal of risk concerns made him feel that she accepted him:

…It’s like go on with your life and just be with someone else and be happy. She’s like, why? ‘Cause I’m like, I can’t do this, this rubber condom thing. I can’t, just, I can’t do it anymore. She was like, okay, you’re problem is my problem. We’re not gonna use them anymore. I was like, no. She was like, no, we’re not doing it anymore. So, she threw them away and I couldn’t believe I actually, somebody accepted me for me… (Black male, 45, HIV-positive, bisexual)

A few other participants provided accounts in which their partners had a cavalier attitude about avoiding risk behaviours despite knowing of their partner’s HIV infection. One woman with HIV described her struggle to convince her partner to use condoms as follows:

I used to ask him to use condoms and he didn’t never want to. He just didn’t like using condoms I guess. I always used to get mad at him ‘cause I wanted him to take care of himself, you know, I didn’t want nothin’ with him without condoms. But he didn’t want to use condoms. Plus he wanted me to have a baby. (Hispanic female, 51, HIV-positive, heterosexual, injection drug user)

In contrast, one 53-year old, Hispanic, gay mant commented on how HIV is discussed more often in the gay community. He described his partner prior to his diagnosis as ‘very conscientious,’ making it easy to have discussions about testing and risk.

Taking care of one another.

In the context of HIV, responsiveness in taking care of one another to stay healthy was an important part of intimate couples’ relationships. Many participants described the caring actions they gave or received from their partners in getting to doctor’s appointments, ensuring medication adherence, and making efforts to reduce risk. In several of these instances, participants partially attributed their treatment adherence to their relationship. Four of these participants described how their partners responded to their needs by taking them to their doctor’s appointments. One participant who was in a sero-concordant relationship stated,

When I go to an appointment, he asks me how did it went, how’s my T-cells, you know, my viral load like I ask him… the type of support that I always wanted was communication, trust, take care o’ me, I take care o’ you. That’s all I want. (Hispanic female, 47, HIV-positive, heterosexual, injection drug user)

A few participants reported that their partners reminded them to take their medication for their HIV treatment. In one account, a 45-year-old HIV-positive Hispanic IDU man described how he was in denial after testing positive and did not seek treatment. He began treatment three years later after becoming sick. Now his girlfriend, who was also HIV-positive, assists in his care. He lives with her, they share drugs and have unprotected sex, but they also help each other with ensuring medication adherence and attending doctor’s appointments regularly. He emphasised that, ‘…she helps me with my pills and that, we watch over each other.’ In contrast, a few other participants provided accounts in which they described changing their sexual practices to provide the self-care they needed. A 45-year-old HIV-positive heterosexual white woman in a sero-concordant relationship indicated that she has no desire for sex anymore and her partner is supportive, but she felt bad for him because ‘he’s a man and he got needs.’

Lack of disclosure about HIV and loss of intimacy resulting from poor partner responsiveness.

Some participants provided occasions on which they or their partners neglected to disclose their HIV status or their risk, or revealed it in an imprecise way. One example occurred because the participant refused to learn of his own status, thereby putting his partners at risk. He did not realise he had HIV until one of his girlfriends died after they were separated; people told him she had died from AIDS. He delayed testing for years, during which time a second girlfriend died from HIV. Eventually, he got tested while hospitalised for pneumonia and found out that he was HIV-positive. He said,

I think I got it from my first girlfriend, yeah. Now the second girlfriend, I don’t know if I gave it to her. She might’ve had it all the time…Because a couple girlfriends that I had are still today - they don’t have it…So I dunno if I was just a carrier, you know what I mean? (Black male, 56, HIV-positive, heterosexual)

One woman who was married for 17 years said that her husband took a pill every morning, and she got tested for HIV every six months, but he did not tell her why he was taking the medication. She reported,

He was the father of my kids, you know…And I trusted him. And I don’t, at the beginning, about, like, two or three years, I didn’t have it, you know?...Then I started gettin’ sick, and that’s when I knew I was infected…. He used to take pills…But I didn’t know what the pills were for. (Hispanic female, 47, HIV-positive, heterosexual, injection drug user)

Several participants found out through testing that they had acquired HIV rather than through their infected partners. One woman said that when she found out,

I just broke down. I couldn’t believe this had happened to me. Because of the guy that I was with, he was a carrier, and I didn’t even know it and he didn’t even talk to me about it, and he died. (Black female, 58, HIV-positive, heterosexual)

Participants reported on times they questioned the truth of their partners’ reported HIV status. One Hispanic, gay male participant indicated that his partner revealed amongst friends that he did not know his HIV status and that he ‘would rather not know’ [his status]. The participant questioned him about it because his partner had told him in the beginning of their relationship that he was negative. He described that moment as follows:

I was just like, “Um, what do you mean by that?” “I don’t know; I’d rather not know.” By then, I guess, he was comfortable and everything, you know – or maybe the drinks, who knows? He was just like, “Yeah, I don’t – I don’t know; I don’t wanna know.” And I’m like, didn’t you tell me something before? So, the next day I called out from work ‘cause I had to work and I went and got tested. (Hispanic male, 38, HIV-positive, gay)

A few participants provided accounts in which they said they hoped their partner was engaging in preventive behaviours or did not question their partner’s HIV status but lacked trust in their partner’s honesty about disclosing risks. One participant had been infected by her husband who was a drug injector, and though she wanted to believe that he was always using fresh needles, at times she questioned if he was telling her the truth. She described the following conversation with him:

You know, I hope you’re not sharing needles and things like that and he’ll be like, no, you know, I always get fresh needles …some of me was just like, you know, maybe he’s telling me the truth or maybe… (Hispanic female, 38, HIV-positive, heterosexual, injection drug user)

Several participants reported a loss of intimacy in relationships resulting from a lack of partner responsiveness or negative responses after disclosing their HIV status or care needs. These participants noted that upon learning of the HIV diagnosis either they or their partner decreased or ended intimacy within the relationship. One participant said that she acquiredHIV from her partner, and because he lied, she could no longer trust him.

It did change a lot and you know, the fighting…I felt destroyed. I, I wouldn’t sleep wit’ him and he, he used to stay in my house because we weren’t married. That was the father of my kids but I wouldn’t sleep with him or nothing and then the fighting came. (Hispanic female, 47, HIV-positive, injection drug user)

Another participant described the change in her perspective on her partner as a result of his revealing his HIV status after she was already infected:

I’m looking at him like, “Did I ever really know this guy?”… Because like that’s something that you shoulda told me in the beginning and let me determine if I wanted to still be with you or not. You know what I mean? But you just gave me a life sentence.(Black female, 50, HIV-positive, heterosexual)

For others, their long-term relationships did not last after they revealed their HIV status to their partners. One man described the response to his diagnosis as,

When I told my wife, she cried. She never cries. She’s the toughest woman I knew next to my mom and I couldn’t even get the words out to tell her because I was so distraught. It takes all the, the life and breath out of you and…I immediately knew that I was gonna eventually lose my wife. (Black male, 45, HIV-positive, bisexual)

Intimacy in the context of recent HIV prevention developments

Meaning of ‘undetectable viral load’ in intimate partnerships.

Achieving and maintaining an undetectable HIV viral load through consistent use of antiretroviral treatment creates a new context of protection for couples where one or both partners have HIV. Some participants described their feelings about themselves or their partners having undetectable viral load and what this meant to their relationships. One participant said that her boyfriend should feel protected because she disclosed that she was “undetectable”. She stated,

Like I told him, I’m not gonna hurt you. A person that don’t know their status, a person that is not taking care of their self, a person that will not, that will refuse taking medicine is who you should run from. But a person like me, you don’t have to run from. It would take a lot for me to do anything to you. And he knows that and understands that and respects that. And my boyfriend is one of those people that, yes, I know what you’re going through, but I don’t want to talk about it. (Black female, 35, HIV-positive, heterosexual)

When speaking about their relationships, a 56-year-old HIV-positive Black transgender woman said that being undetectable meant ‘I can still get what I want,’ and a 45-year-old HIV-positive Hispanic injection drug user man said it meant that ‘when I’m with my girl I don’t use no protection.’

A few participants mentioned situations where HIV was not detected in their bodies because it was ‘dormant’. A 50-year-old HIV-positive heterosexual African American woman provided an account indicating she was initially upset when she received her HIV diagnosis because her husband never informed her he had HIV. After the initial shock she just ‘brushed it off’ because her viral load was undetectable.

Meaning of PrEP for intimacy

The availability of PrEP for HIV prevention has created new options for sero-discordant couples. Some participants described how they or their partners responded to PrEP. One 35-year-old, sero-negative, Hispanic, gay male participant and his HIV-infected partner described how they first learned about PrEP in a health educator training class and then followed up about it. Another HIV-positive participant explained that he maintained relationships with two women. He indicated that neither of them wanted him to use condoms, so when he told both women about PrEP, they both made a decision to take it.

‘Yeah, they both take PrEP… they’re both negative…I think everything is going good…They don’t get along, but they know about each other.’ (Hispanic male, 39, HIV-positive, heterosexual, injection drug user)

However, another HIV infected participant indicated that knowing about PrEP did not change her partner’s actions. She took her partner to get tested, and after testing negative, he ignored the recommendations to start PrEP. She said:

[I] explained to him how important it was for him to get on Truvada since his test was negative…That went in one ear and out the other. I said, okay maybe he just don’t care. (Black female, 43, HIV-positive, heterosexual)

Discussion

Health promotion messages for risk reduction through safe sex practices are often incongruent with the realities of sexual preferences and practices among individuals in intimate partnerships. Additionally, these messages are usually directed at individuals, which may make them less meaningful the relational contexts in which sexual risk commonly occurs (Corbett et al. 2009). Recognising these contradictions is important given that many interventions are not designed to be delivered to couples, resulting in missed opportunities to strengthen intimacy through open communication while enhancing the couple’s mutual supportiveness.

In this paper, we focused on intimate relationships in which one or both members of the couple had HIV, their descriptions of intimac, and the ways they described how the presence of HIV risk behaviour or infection affects their relationships. Our findings suggest that how HIV is addressed or managed in intimate relationships is a reflection of how couples self-disclose, how partners respond to each other’s concerns about risk, and how individuals address their needs for HIV protection or care (Reis and Shaver 1988).

Interviews also revealed that disclosure of HIV infection does not necessarily result in the discontinuation of behaviours that could transmit HIV between members of an intimate couple. Participants described instances where their partners had a cavalier attitude about avoiding risk behaviours, even after learning of their partner’s HIV infection. Prior research suggests that in some cases individuals may engage in condomless sex and other risk behaviours as a way of building a stronger relationship with their partners by indicating their trust (Corbett et al. 2009). Some participants said that they or their partners were open about their HIV diagnosis to seek positive, supportive responsiveness from their partners; a point supported by the process model of intimacy which suggests that motives, fears and goals can affect both disclosing sensitive information and interpreting a partner’s responsiveness (Reis and Shaver 1988). For other participants, they or their partners neglected to disclose their HIV status or their risk, or revealed it in an imprecise way, in order to preserve feelings of intimacy and trust within the relationship. Relational intimacy can be lost when one of the partners becomes disaffected as a result of this non-disclosure, and physical intimacy can be lost when sex is no longer viewed as desirable or is limited as a result of the HIV diagnosis.

In several instances, participants attributed their HIV medical treatment adherence to the responsiveness of their partners and their approaches to taking care of each other. These participants either provided or received reminders from their partners about medication and appointments and encouraged their partners to initiate HIV care. This, in turn, fostered a sense of reassurance that partners were decreasing their risk by being proactive about HIV care management (Goldenberg and Stephenson 2015). It also generated a sense of support from the partner, despite the challenges of living with HIV disease, ongoing care and the potential for stigma. Additionally, some participants described PrEP as an added component to their preventative behaviours, although they differed in their rationales for using it. Their explanations ranged from using PrEP as a means to support the partners’ mutual interests to reduce risk of HIV transmission or a means of justifying having concurrent partners.

HIV treatment advances have led health professionals to aim for patients to achieve an undetectable HIV viral load (Panel on Antiretroviral Guidelines for Adults and Adolescents 2017) through the consistent use of ART, which also significantly reduces the risk of HIV transmission to their partners (Attia et al. 2009). In the context of HIV as a chronic disease and the availability of viral load testing, beliefs about the transmissibility of the virus need further exploration as they affect and are interpreted by intimate couples. The perception that a partner has a low risk of HIV transmission can influence a couple’s decision to use or discontinue the use of condoms or other forms of protection (Ober et al. 2011). In the USA, condoms are widely accessible and general understanding of the consequences of risk associated with non-use is high, yet condom use remains low (Ober et al. 2011). This suggests that either 1) perceptions of personal risk are low, 2) that people are willing to take risks in order to experience the pleasure and intimacy of sex without a condom, or 3) a range of cultural and structural factors impede use. Achieving undetectable viral load, as well as improving PrEP uptake, opens new doors for sexual intimacy without fear of transmission through condomless sex -- a point that it is beneficial to integrate into health promotion messages (Corcoran 2007).

Some issues related to intimacy, HIV disclosure and partner responsiveness to HIV cut across race, ethnicity, gender and sexual orientation affecting couples in a similar way regardless of identity and circumstances. This may be because of the stigmatising nature of infection and the demands of daily medication and regular medical check-ups to manage the disease. Recognition of the effects of these factors on partner intimacy should drive public health efforts to mitigate the impact of HIV on couples and to ensure that important messages regarding these issues feature couples of different ethnic/racial groups.

As with any research, there are several limitations to this study. First, the in-depth interviews used for this analysis were conducted as part of a larger study focused on the use of of HIV services and supports, so the depth of resulting data related specifically to intimacy as a communication process was limited. Second, while the purposive interview sample was designed to reflect characteristics of the cohort from which it was drawn, both the interview sample and the larger cohort may not be representative of the broader HIV-affected and infected population. This would require additional quantitative surveys.

Through the current study, we observed that intimacy frequently increases both a sense of protectiveness from the partner and mutual care, even when risk of transmission may be high. Our findings suggest significant benefits to acknowledging issues related to intimacy when developing and disseminating health promoting messages. Highlighting elements of intimacy in connection with HIV preventive approaches, and using intimate couple communication styles to support HIV care, may ensure that couples can relate to the message despite their level of concern for risk.

Acknowledgements

We wish to thank Jean J. Schensul and the members of the research team who contributed to this study, including Rosely Gonzalez, Patrick Lau, Jianghong Li, David Lounsbury, and Lucy Rohena.

Funding

This work was supported by the National Institute of Mental Health [grant numbers R01MH103176, R21MH110335]. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Footnotes

Disclosure statement

No potential conflict of interest was reported by the authors.

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