Then we looked at his results: Men who have sex with men from New York City and Puerto Rico report their sexual partner’s reactions to receiving reactive HIV self-test results.

Abstract

Secondary distribution of HIV self-tests to sexual partners is acceptable but concerns remain about reactions if a partner tests HIV-positive. We report on 14 participants whose sexual partners tested HIV-positive during the “I’ll Show You Mine” Study, a randomized controlled trial (N=272) of HIV self- and partner-testing among men who have sex with men (MSM) and transgender women (TGW). All 14 were MSM and racial/ethnic minorities, Mean age was 36.6 years; 86% were gay-identified. Twenty-four partners tested positive; about half were new partners. Six participants had multiple partners test positive. During in-depth interviews with 10 of these participants, they reported their partners’ reactions ranged from tearful and worried among those whose result was unexpected, to resignation among those who suspected a positive result, to nonchalance among partners who participants concluded knew of their HIV infection. After testing, some HIV-positive partners disclosed prior knowledge of their status. No partner reacted violently. Participants typically comforted their partners and encouraged confirmatory testing. Four participants had anal intercourse with partners who tested positive. Participants and partners were able to effectively handle situations in which the partner tested HIV-positive.

INTRODUCTION

Acceptability of HIV self-testing (HIVST) is high across a variety of populations [1–5], has been shown to increase frequency of testing [6,7] and can reach individuals who have not tested recently or ever [8,9]. Use of HIVST with sexual partners is also acceptable [5,10,11]. Partner-testing has been used to facilitate testing of individuals who do not regularly test [11,12] and to screen sexual partners prior to a sexual encounter to reduce risk of HIV infection [5]. However, a significant concern about this use of HIVST centers around partners’ potential reactions if their test results are reactive.

All studies of HIVST with partners have reported partners testing positive [5,11,12]. However, the number of such partners was small, resulting in scant scientific literature on partners’ reactions to their HIV-positive results. In one study to promote partner and couple testing among heterosexual couples in Kenya, eight partners tested positive using an HIVST [12]. Another study of secondary kit distribution to partners of pre- and post-natal women in Kenya found that four partners tested positive [11], while among a cohort of female sex workers in that study, the authors reported that 41 of their partners tested HIV-positive [11]. However, little is reported on the partners’ reactions to their test results, even in the qualitative paper reporting on the experiences of the female sex workers [13]. In the U.S., Carballo-Diéguez et. al. [5] have reported on the use of HIVST among men who have sex with men (MSM) who regularly engage in condomless intercourse (in the absence of Pre-exposure prophylaxis (PrEP) use) to screen sexual partners prior to engaging in sex. In that study of 27 participants, seven potential sex partners received reactive HIVST results; six were believed to have been unaware of their HIV infection. While publications from this study explored the reactions of five participants whose sexual partners tested positive [14], there was no exploration of how the partners reacted. Given concerns about potential harms of HIVST use [15], exploring reactions from partners who test positive is critical.

To address this gap in the literature, this study presents findings on how partners and participants responded to partners’ reactive results during the iSUM (I’ll Show You Mine) Study, a randomized controlled trial conducted in New York City and San Juan, Puerto Rico that explored the use of rapid HIV tests for self- and partner testing among men and transgender women (TGW) who have sex with men at high risk of HIV acquisition. First, we present participant’s descriptions of how their partners responded to the HIV-positive test results; then, we report on how participants reacted to the situation and, lastly, we report on sexual behavior following a partner’s HIV-positive test results.

METHODS

Participants

Participants were recruited in-person at LGBT non-profit organizations or events and online via social media and dating sites/apps; see Iribarren, et. al. [16] for more details on recruitment. Potential participants who were 18 years of age or older, HIV-uninfected, non-monogamous MSM and TGW who reported never or seldom using condoms for anal intercourse, had at least three sexual occasions with a partner of discordant or unknown status within the last three months, and did not use pre-exposure prophylaxis (PrEP) were invited for a screening visit.

Procedures

Greater detail of study procedures, CONSORT diagram, and primary findings of the study are presented elsewhere [17]. Briefly, at the screening visit (Visit 1), participants completed a baseline behavioral questionnaire via computer administered self-interview (CASI), self-tested with a rapid HIVST, and were administered a confirmatory test. To remain eligible, these individuals had to test HIV-negative and report on the CASI that they were likely to use the OraQuick for self- and partner-testing and felt they could handle a violent situation that occurred as a result of using or proposing to use a rapid home HIV test. Still eligible participants were invited to return for the enrollment visit (Visit 2) within one week, at which point they were randomized into the intervention or control arm. Participants in the Intervention arm were given ten HIVST kits to take home with the option to request up to 20 additional kits over the subsequent three months and viewed an instructional video that included key points for consideration when using the tests to screen sexual partners, including respecting partners’ decisions to not be tested and potential violent reactions. Those in the control arm received condoms but no HIVST kits. All participants received daily text messages (SMS) asking them to report on sexual behavior and remaining self-test kits, see Brown, et. al. [18] for further details. After three months, all participants were contacted by phone or text to schedule their Visit 3 appointment. At Visit 3, they had an HIV test and completed a follow-up CASI. In addition, the first 10 participants whose partners tested positive using the HIVST kit underwent an in-depth interview. Participants were compensated in cash for each of the study visits and received a small incentive for responding to the SMS. In total, the compensation for study participation could amount to ~445, including ~20 for participating in the in-depth interview. All procedures were reviewed and approved by the Institutional Review Boards at New York State Psychiatric Institute and the University of Puerto Rico Medical Sciences Campus.

Measures

The Visit 3 follow-up CASI assessed HIVST use and asked participants for detailed information about up to three partners who tested HIV-positive using the HIVST, including a description of the partner (e.g., type and age), testing location, and whether the partner sought confirmatory testing. When participants were scheduled for their Visit 3 follow-up, they were invited for an IDI if they had a partner who tested positive, identified as a transgender woman, or was considered a special case, meaning their use of the HIVST was of particular interest because they reported having used many kits or reported being a sex worker. The IDIs were conducted at the New York City office either in-person (for New York City participants) or over the phone for (Puerto Rico participants) by one of four bi-lingual research team members (including, ICB, JLR, and RG), one is a clinical psychologist, the other three have Masters in Public Health degrees; all with extensive experience conducting IDIs.

IDIs were conducted using a guide that first inquired about general experiences of using the HIVST with partners and subsequently elicited three detailed experiences of using (or not using) the HIVST with partners (see supplementary material for IDI guide). The IDI specifically explored all instances in which a participant’s partner tested HIV-positive with study-provided HIVST kits, including descriptions of the type of partner, where the testing occurred, how the testing unfolded, how the partner reacted to the test results, how the participant reacted to the test results, and what happened afterwards (including engaging in sex).

IDIs were audio-recorded and sent to a third-party transcription service that had signed a confidentiality agreement. Once a transcript was received, it was compared to the recording to ensure accuracy. At this point, any identifying information in the transcript was removed to ensure anonymity.

Data Analysis

Data analysis was limited to participants in the intervention arm of the study who reported in the CASI that a partner had received HIV-positive results and to qualitative data gathered from 10 of these participants. Frequencies were calculated using SPSS statistical program for data analysis. Percentages, means, and medians (where applicable) are reported. IDI audio-recordings were transcribed and verified for accuracy. A codebook that included code names and definitions was developed based on the IDI guide. The codebook was modified as needed after coding a set of five initial transcripts. Transcripts were loaded into the NVivo v.11 qualitative data analysis program and coded by four independent coders (RG, JLR, CL, TF) who then discussed coding discrepancies until reaching consensus. For this study, the code report for “Reactions to partner’s positive results” was pulled and reviewed to conduct a deductive, thematic analysis to analyze the explicit content reported on how study participants and their partners reacted to the partners HIV-positive test results. We also explored the report for cases that contradicted the main trends. Quoted text has been edited for clarity and readability without compromising the integrity of the content. Quotes from participants in Puerto Rico were translated from Spanish to English and verified for accuracy by a second translator.

RESULTS

A total of 272 participants were enrolled in the iSUM Study; 166 in New York and 106 in San Juan. Of the 136 participants randomized into the Intervention arm, 130 completed the follow-up assessment. At the three-month follow-up (Visit 3) fourteen (11%) of these participants reported having had a partner receive reactive HIVST results during the study. All 14 were MSM and all were racial/ethnic minorities (5 Latino; 10 African-American, 3 More than one race, and 1 Asian). They had a mean age of 36.6 (SD= 12.4) and mean income of ~17,987 (SD=~15,597); 86% identified as gay/homosexual. This paper focuses on the experiences of these 14 participants, the first 10 of which also underwent an in-depth interview.

Occasions of partners receiving HIV positive results

The 14 participants had a total of 24 sexual partners who received HIV-positive results. In NY, 11 participants had a total of 18 partners who tested positive, whereas in San Juan, 3 participants had a total of 6 partners who tested positive. Based on data from the CASI (shown in Table 1), eight participants had one partner who tested positive; the remainder had multiple partners who tested positive. Partners were equally as likely to be new vs. previously known partners, although no participants had a lover/primary partner who tested positive. Testing mostly occurred in the participant’s or their partner’s own home/apartment.

Table 1.

Frequency and characteristics of partners receiving reactive HIVST results.

	N
Number of participants who had partner test HIV positive	14
Number of partners who tested HIV positive using HIVST	24*
1	8
2	4
3	1
4	0
5	1
Types of partners who tested positive
A partner you just met and were going to have sex with for the first time	10
A partner you knew but was going to have sex with the first time	2
A partner with whom you had had sex before (fuck buddy, friend with benefits, etc.)	10
Your lover or primary partner	0
Where did the testing occur?
Your home/apartment	10
Your partner’s home/apartment	9
Other (e.g., Hotel and Car)	3

^*Quantitative data collected on 22 of these partners

Reactions to HIV positive results

Overall findings showed that, in general, participants and partners were able to effectively handle situations in which the partner received a reactive HIVST result, with no violent reactions reported. Nonetheless, the data revealed a range of reactions from partner’s who received HIV-positive test results, which varied based on the degree to which the results were expected. Partners who were surprised by the results appeared most distressed. In general, participants were supportive of their partners, offering information, known referrals, and expressing willingness to accompany them for confirmatory testing. Participants reported a number of occasions in which the sexual encounter continued after the reactive results.

Partners’ reactions

Individuals who were surprised by the results were often distressed and became sad or nervous; some questioned the validity and reliability of the test. Some participants, if they had another kit available, performed a second test to see if the reactive result was repeated.

We got to his house, and he was very happy, and then we talked for a while and smoked a cigarette. Then he moved over to do the test but when we did it, he did not want to cover the results and after a minute had gone by, we could already see that it was positive. That’s when he got really nervous. Those 20 minutes were very distressing since he could see the result himself, and I was telling him that he needed to cover the results, that it could be negative or positive, but that he needed to wait the 20, 30 minutes for the final result. Obviously, the result stayed positive, and he just got very nervous. He got tearful. He got frustrated. He did not get violent. He did not want to continue spending time with me. He just shut down. He just told me that it was better I take him home. (W625, 46 years old, Hispanic Black, San Juan)

So, we was basically talking about his testing results, and then, I went over, I looked at it, And then, he was like, “Is something wrong?” So I was like... “You want to look at this?” And he looked at it. And this was, like, mad awkward. For like about a good two, three minutes, it was awkward. It just felt funny. It was silent. At that moment, what do you say? How do you feel? So I just paused too and then we just started talking and then he was like, “Oh, like, that’s crazy. Like, you sure it’s right?” I’m like, “Yeah, that’s right. It says it’s positive. You can go to the doctors to get another one taken, to make sure, but these tests is accurate. It’s the same ones that they give you inside the doctor office.” And he started questioning the kit, you know? We both were shocked. I got back from the bathroom and was like, “Are you alright, are you OK?” “Who do you think you got it from?” He said, “I probably got it from my ex.” I was like, “Oh, OK.” (Z583, 26 years old, Black, New York)

For a few partners, the test results confirmed their fear of being HIV-positive due to high-risk sexual encounters. In these situations, the reactions were more subdued, although it was obvious to the participant that the partner was saddened by the results.

Immediately his emotional state changed. Um, he got a bit depressed but since we’d already spoken about his sexual activities and he had told me that because he’d been sexually active and without protection and all that, he told me that he was expecting it… afterwards, he didn’t stay long and left. (W628, 38 years old, Hispanic, San Juan)

When he did the test, he was already pretty certain that the test would be positive. When it turned out positive, he thanked me, and asked for my email address to stay in touch. I still wanted to repeat the test, did another one but that one turned out positive too. Afterwards, we went to eat and by then he was calm…we casually talked about other people he had recently met who were positive and he had met someone who had been positive for 20 years. And then, well, at least he did not cry. At least I did not notice him crying. (W625, 46 years old, Hispanic Black, San Juan)

Two partners became angry, although in one of these instances the participant perceived the partner to be angrier that the sexual encounter would not continue due to the reactive test result as opposed to the reactive result itself. None of the partners became violent.

[I explained… ] As we can see in the test, it indicates it [a positive test result], that’s how I said it. With a calm tone, relaxed, so that he would not get hysterical. And when he noticed that it had turned out positive, that nothing was going to happen between us, well, he got upset. I told him to go to a health center to get a blood test done, that it was the most accurate one, he got out of the car and left. I thought he would be more violent, but he was definitely angry and upset. (Interviewer: Do you think he was more upset that the sexual encounter was done, or because he found out his test was positive?) Yes, I think that was why...the first one. (W1351, 21 years old, Hispanic Black, San Juan)

So, when I brought that up [the HIV self-test] with her it was like a big argument. I’m like “You’re arguing with me over nothing. You don’t have to do this.” I just don’t want to have sex with her like that. Then she continued to try to suck on me and continue to be aggressive but I was like, “Nah, we can’t do it. Why don’t you just take the test?” So when she finally took it and it came back positive I’m like, “Oh, you positive. You need to go see a doctor or go get checked up or whatever.” [She was] Like, “Who the fuck are you?” “Who are you working for?” thinking I’m from the health department or some type of snitch. (z563, 49 years old, Black, New York)

Some partners expressed surprise in a way that was viewed as disingenuous by the participant, leading them to conclude that the partner was already aware of their HIV positive status but had not disclosed this information to them. Other partners disclosed their HIV status to the participant after receiving their test results.

So I gave him the kit, and then it came up positive. And then, his whole demeanor-- it wasn’t as if he was shocked. Everything was just like “OK, umm, for real?” But it was, like, not sincere. So I was like –- I don’t know, I think he knew he was positive already. [After the results] we, like, talked for, like – we watched TV for a little bit more, and then he left, like -- probably like, 10, 20 minutes and then he left. (Z583, 26 years old, Black, New York)

He was someone I had casual sex with and I had asked him on two occasions and he said he was negative, and I said “well why don’t we go get tested at one of the clinics?” and he always had an excuse. But since I had the test I told him “Hey, I have the test at my house as part of a project, there’s no excuse. Come home and we’ll get tested and we’ll know.” And then I told him “there’s no problem if the test is positive. You and I will have the same sex we’ve always had without any problems.” It was then that he accepted the test, when he saw the results there was a sudden moment of tension and I told him “well, look, you had a reactive result” and he said that the already knew it, that he was on treatment had a negative viral load. Afterwards, there was a bit of tension but we kept talking and got close, we touched, we kissed and had sex. (W628, 38 years old, Hispanic, San Juan)

Participant’s reactions to a partner’s HIV positive results

In general, participants were supportive and tried to be helpful when their partners tested HIV-positive. This included assessing their emotional state, encouraging them to seek confirmatory testing, and expressing optimism over the current advances in HIV treatment. Often, they tried to maintain contact with individuals who tested positive, but these efforts were usually unsuccessful.

I told him “look, let’s re-do the test so that you’ll be calm.” He re-did the test and it came out the same. But before doing the second test, I had already given him a list of telephone contacts in case it came out positive. I asked him if I could stay in touch to know his status, to ask how he was doing. He said yes, but never answered my calls. I was very sad about it because he was a really nice guy. It was stressful… but I felt comfortable handling it because I also have family who are doctors. And occasionally I do the test in other centers, and when I do the test, I always ask about the different ways to protect yourself. I felt prepared, but it didn’t take away from how stressful it was. (W625, 46 years old, Hispanic Black, San Juan)

The next morning, I just told him to -- I would have went with him, but I had other stuff to do, but go to the ER and get a more thorough test done. He did and he ended up really being HIV positive. I kept in touch with him. I added him as a friend on Facebook. We talk, and --He’s doing all right. He’s taking safer measures as far as who he dates, what he does, and he’s keeping on top of himself. He goes to [Community treatment program] or something like that. (z1049, 27 years old, Black, New York)

After she tested positive, the only thing I could recommend or suggest was to go see a doctor. I don’t know what to do from there once a person tests positive. Because I’m not a medical person, but just my compassion comes into play with thinking about the person’s health and everyone’s health around the person and who she’s dealing with and stuff like that… I did [try to contact her afterwards]and she changed her number so… (z563, 49 years old, Black, New York)

However, when ongoing sex partners received positive results and either disclosed prior knowledge of their HIV status or were perceived to be hiding their serostatus, participants’ reactions were more complex. Reactions to these situations ranged from supportive, to a sense of betrayal, and anger. As seen in the second example below, a participant who tested an on-going sex partner of many years who had moved away and returned for a visit struggled to deal with his emotions after their partners’ result. Particularly, the sense of betrayal as consequence of the partner deciding to not disclose his HIV status.

It bothered me, not because he was positive but because of the fact that I was always clear that it wouldn’t be an impediment to us having sexual relations, so that was the tension we had and I told him “look, I was always honest with you that it would not be a problem for me if you were positive.” (W628, 38 years old, Hispanic, San Juan)

I told him that he need to talk to everybody that you have sex with. That’s the moral thing to do. You should tell everybody that you have sex with without any protection, that you [are] HIV positive, because I would do it if I came out positive. (Interviewer: How did he respond to his results?) I really wasn’t focusing on him. I was kind of focusing on my attitude. Because I had a huge attitude because like I said, my suspicions, I had already known, I was actually pissed off. I just asked him to leave. I was really, really pissed off. …To be honest with you, I’m hoping that he calls me, because I need to apologize to him because of the way I reacted. And I just want to make sure he’s OK. My reaction was really negative and that’s something that I have to work on. And I think it was more so negative because I knew the person and I knew the person was positive, you know what I’m saying? (z1331, 53 years old, Black, New York)

Sexual behavior post test result

For many participants, a partner’s reactive test result served to halt the sexual encounter. At times, the participant made it clear that he did not feel comfortable proceeding with the encounter.

No, I didn’t want to have no sexual contact. Yeah. Once it came up positive, I saw it and I think he understood. (Z583, 26 years old, Black, New York)

No, I didn’t [have sex with him]. To be honest with you, I was scared. I was scared, I mean, I even do not use -- sometimes I use condoms, not telling you now every time I do. But, I take care of myself in a way that I don’t want to put myself at risk. (z1223, 52 years old, Hispanic, New York)

However, other participants were willing to engage in sexual intercourse with a partner who tested positive, albeit not immediately following the testing.

We didn’t have sex -- kind of bummed out about it. I mean, we didn’t do much that night, no penetration. We did oral, but we mainly just talked about it, smoked, drank some more. Just because somebody has HIV doesn’t mean that they’re a bad person or nothing, you know what I’m saying? (Interviewer: Did you ever have another sexual encounter?) Yeah, last time was middle of October. (Interviewer: What about the sexual practices have you evolved to? Like anything beyond oral, or not?) Not yet. I think it could. It’s just trying to get myself comfortable with it. I know when it does happen, I would take PrEP, definitely. (z1049, 27 years old, Black, New York)

[As we are looking at the results] I’m saying, like, where are the condoms, to make sure that I got everything that I need so I’m -- That’s when I really, you know--no, he’s HIV positive, but yet you’re looking for condoms. In your mind you’re still planning on having sex with him, which there is nothing wrong with, but -- that’s when it started becoming an eye-opener. We cuddled more than we had sex, more so. I mean, was there penetration? Slight, but -- it was with a condom and lube. But we just cuddled more. (z431, 50 years old, Black, New York)

One participant, in initiating discussions of using the tests with partners, would include a statement about his willingness to proceed with a sexual encounter regardless of the test results, which he found would make it more likely that the partner would agree to testing. This participant had three partners test HIV positive (two of which were aware of their status and one suspected it), and he reported a range of sexual behavior following the results. A sad reaction from his newly diagnosed partner interrupted the sexual encounter; however, he engaged in sex with the other two partners, who were not distressed by the test results.

One had known for five years and he was in HIV treatment [and had a negative viral load], we had a bit of dialogue and then later we got turned on and had sex. Well, the reality is that, at first, I had difficulty getting an erection because I was psychologically thinking about all of this, but after a while I was able to get an erection and could do what needed to be done. This time we did it with protection. Eventually, we were together again but I didn’t use protection. We had sex [other times], but it wasn’t as frequently as before…

…With this one (a different partner) I only had oral sex, and nothing more. I didn’t do anything else with him. [In the past we] mainly had oral sex, rarely we would have [anal] sex and with him I always protected myself. (W628, 38 years old, Hispanic, San Juan)

In discussing his overall experience of using the tests with partners, he noted that although some of these partners had been ongoing partners, post-test the sexual relationships ended through a mutual distancing.

DISCUSSION

Findings from this study are consistent with other studies that have found that secondary distribution of HIVST to sexual partners is acceptable and identifies individuals who are unaware of their HIV infection [5,11,12]. Furthermore, this study showed that participants and their partners were able to deal effectively with a partner receiving HIV-positive results. Given that participants in this study were specifically selected because they reported rarely or never using condoms for anal intercourse, the use of HIVST with sexual partners may have prevented them from becoming HIV infected, as they could avoid engaging in high risk sexual behavior which could have exposed them to HIV.

While a reactive test result is typically distressing, this study showed a range of reactions from partners who received a positive result, largely based on how expected the result was. Partners who tested positive for the first time had the strongest reactions, usually of sadness or nervousness, especially if the result was very unexpected. Among some partners who were already aware they were HIV positive, HIVST facilitated serostatus disclosure to the participant. No violence and very few angry responses from partners were reported. Such reactions appear to occur more frequently at the time of asking a partner to test than when receiving results [19]. As such, partners who are willing to undergo a rapid HIV test in this context may feel they are able to deal with the results of the test.

Consistent with all previous studies that have reported on partner-testing, all participants were able to deal with the situation [5, 11, 12]. In general, they provided support to partners who tested positive, including recommending they seek out confirmatory testing, encouraging them about the array of effective treatments for HIV, and providing overall emotional support. Most participants tried to maintain contact with partners who tested positive, although partners often discontinued communication.

Contrary to prior findings of HIVST use with partners among MSM [5], in this study a reactive result did not immediately lead to the end of the sexual encounter for some participants. This included partners who tested positive for the first time as well as partners who had been aware of their serostatus and achieved viral suppression. Conversations around sexual behavior following test results suggest that while the test results heightened their HIV risk awareness, there appeared to be a lessening of stigma towards people living with HIV. Particularly, with an increased willingness to reduce risk through condom use and PrEP use, or decreased concern of infection if the partner is undetectable.

Findings from this study add to a growing literature on secondary distribution of HIVST to sexual partners demonstrating its utility in reaching previously untested and undiagnosed individuals with minimal negative consequences (i.e., no violence or self-harming behavior, etc) among partners who receive an HIV positive test result [5,10–13]. Future work in this area should focus on the development, implementation, and evaluation of large-scale scales studies of secondary distribution programs, possibly through existing sites providing HIV testing services. Such programs have the potential to reach individuals who have never or rarely tested as well as high risk sexual networks whose members should test frequently [20]. To ensure the success of such programs in engaging those with undiagnosed infection, it will be critical to provide guidance and support for confirmatory testing and linkage to care, whether through hotlines or in more recent developments, through smartphone apps to accompany the use of an HIVST [21–23].

This study had several limitations that should be considered. First, findings are based on participants’ reports of how partners reacted; partners who received positive HIVST results were not interviewed and their experiences may differ from those reported by study participants. Second, most of the participants and partners in these studies were male dyads (one partner was a transgender woman) and same-sex dynamics may be different from those in male-female couples. Third, the small number of IDIs did not allow for an exploration of differences based on age or location. Lastly, this is a unique population of individuals whose sexual behavior with partners places them at high risk of HIV infection; thus, findings from this study may not be generalizable to other MSM or the broader population.

Nonetheless, the ability of participants and partners to handle the stress of a reactive HIVST result offers further support to the utility of secondary distribution of HIVST to sexual partners, particularly in their ability to facilitate regular HIV testing in high risk sexual networks and to reach individuals who may not be aware of their HIV infection.