Introduction

HIV self-testing (HIVST) is gaining worldwide popularity. It has been endorsed by the World Health Organization [1, 2], and studies conducted in countries with diverse cultures, income levels and health infrastructures attest to the interest that this technology has generated [3,4,5,6,7,8,9,10,11,12,13,14,15,16,17,18,19,20,21,22,23,24,25,26,27,28]. Advances in HIVST assays have improved accuracy and shortened window periods [29]. Moreover, the availability of self-test kits that allow simultaneous testing for HIV and other STIs [30] is likely to further stimulate their widespread use. Yet, various stakeholders have expressed concerns that HIVST may lead to unintended harm [31]. This concern, previously raised for other self-tests despite very little evidence of any harm occurring from their use, has encouraged researchers to request “that HIV self-testing not be restricted based on fears of harm, but rather that, as self-testing is expanded, researchers and policy makers pay particular attention to monitoring and measuring for unintended harm” [31].

Violent reactions from partners could be one potential harm in the context of self- and partner-testing. Yet, studies have identified few violent incidents from partners related to HIVST. Two studies conducted in Malawi and Kenya in which participants were given HIVST to use for themselves and their partners found few to no cases of intimate partner violence related to HIVST use [32, 33], and another study among female sex workers in Zambia found only three cases of intimate partner violence among 965 participants [34].

There is a dearth of literature on violence related to HIVST use among men who have sex with men (MSM) and transgender women (TGW) who propose it to their sexual partners. Our qualitative research study with 57 MSM in New York City (NYC) [35] found that, beyond refusal to take the home test, most participants did not anticipate that the invitation to use a rapid home test would generate any violent reactions. Referring to one-night-stands, many participants stated that they trusted their skills to judge a situation and would not bring up the idea of using home tests if there were a potential for violence. Most participants felt they could handle aggression or violence in the event it might occur. However, the study was hypothetical: participants pondered the outcomes of proposing self-testing to their sexual partners but did not actually do it [35].

Ethics committees that review research proposals at academic institutions often take a conservative approach to any situations that may involve risk for participants. Although it is impossible to completely rule out risks in most situations, in the case HIV self- and partner-testing using rapid tests it is important to go beyond hypothetical considerations and explore what happens in “real-world” situations. The present manuscript contributes to the scientific literature presenting results from a study in which HIV-negative MSM and TGW in the United States were given HIV self-tests to use with potential sexual partners over the course of 3 months. We describe the frequency of violence associated with self-test kit use with partners as well as participants’ assessment of their ability to handle or avoid violent situations.

Methods

The study’s field name was ISUM (“I’ll show you mine”), a pun on the idea of potential sexual partners showing each other their HIV self-test results. It was a 5-year, randomized, controlled trial with the primary aim of exploring the effectiveness of HIVST as a risk-reduction tool for individuals at high-risk of HIV infection by comparing rates of condomless anal intercourse with sero-discordant or unknown status partners among participants who had access to HIVST compared to those who did not (see Carballo-Diéguez et al. for further details) [36]. An exploratory aim of the study was to assess frequency of violence and participants’ ability to handle or avoid violence related to HIVST use with partners. To focus on individuals at high infection risk, participants had to be HIV-negative and 18 years of age or older, identify as a man or TGW who has sex with men, report three or more occasions of condomless anal intercourse with sero-discordant or unknown status partners in the prior 3-months, have had two or more sexual partners in the previous 3 months, and not be on oral PrEP at the time of recruitment. The study took place in NYC and San Juan, Puerto Rico (PR), and participants could choose English or Spanish when responding to surveys and interviews.

Participants were sampled through venue-, online- and referral-based recruitment [36]. Recruitment included word-of-mouth through other participants who were given a $30 incentive for referring friends who enrolled in the study, for a maximum of $90.

Participants responded to a brief pre-screening survey by phone or in-person. Those who qualified were invited to an in-person screening (Visit 1) in which they completed a baseline behavioral questionnaire via computer administered self-interview (CASI), and also completed a rapid HIV self-test (OraQuick® Rapid HIV Test) followed by a confirmatory test (Alere Determine™ HIV-1/2 Ag/Ab Combo Test) administered by staff. Eligible individuals were invited to return for enrollment (Visit 2) within one week and were randomized to either intervention or control group. The intervention group participants, who are the focus of this manuscript, received ten rapid oral HIV self-test kits to take home and viewed a video that included key points to consider when using the tests to screen sexual partners or clients (https://www.youtube.com/watch?v=uq6Qb4BJLdM), including references to potentially aggressive or violent partner reactions when suggesting self-testing. The control group was neither given self-test kits nor shown the video at Visit 2. Both intervention and control group participants received HIV-counseling and were offered condoms. All participants received daily text messages (SMS) asking them to report on sexual behavior and remaining self-test kits (see Brown III et al. for further details) [38]. Participants in the intervention group could request up to 20 additional kits before the end of the trial period.

After 3 months, participants returned for a follow-up visit (Visit 3), in which they were re-tested for HIV and completed a follow-up CASI. In addition, a subsample of 30 participants in the intervention—selected based on having used more than ten test kits with partners, having any partner test positive, or being of transgender identity—underwent an in-depth interview to explore test use among participants whose unique risk profiles would add to the understanding of use of HIVST with partners. Interviews were conducted face-to-face in NYC and by phone with participants from PR (see Giguere et al., Rael et al., Balán et al., Lentz et al., and Iribarren et al. for further details) [39,40,41,42,43]. At Visit 3, those in the control group were given six HIV test kits to take home, were shown the video about test use, and finished study participation. The intervention group participants continued follow-up for three additional months with no further provision of kits. Participants were compensated in cash for the clinic visits and received a modest incentive for responding to the SMS. In total, the compensation for study participation could amount to $445.

Measures

Baseline (Visit 1)

Among others, the baseline CASI questionnaire included sections on demographics, sexual behavior, and skills to judge and manage HIVST-associated violence. By study design, respondents who reported that it would be very hard for them to judge whether a partner could become violent or handle a violent situation were deemed ineligible for study participation.

Follow-up Questionnaire (Visit 3)

A section of this questionnaire repeated the questions on skills to judge and manage HIV-self test associated violence, this time formulated retrospectively. Among other topics, the follow-up questionnaire inquired about sexual behavior and use of rapid home tests during the prior 3 months, including how many partners got angry or upset and how many got physically violent due to the request to use an HIVST. All procedures were approved by the Institutional Review Boards at the New York State Psychiatric Institute and the University of Puerto Rico Medical Sciences Campus.

Data Analysis

Data from the baseline and follow-up CASI questionnaires were analyzed using descriptive statistics in SPSS (v25).

Results

The baseline CASI was completed by 368 individuals. Of the 299 respondents to questions on violence at baseline, only 5 (2%) were ineligible due to anticipating they would find it very hard to avoid or handle violence (other ineligibility reasons are reported elsewhere) [37]. Two hundred and seventy-two study candidates (including 27 TGW) met enrollment eligibility criteria and returned for 1:1 randomization/enrollment. The 136 intervention group participants (which included 13 TGW) are the main focus of this manuscript (Table 1); of them, 130 completed the Visit 3 follow-up assessment (of the six who did not complete Visit 3, five were in NYC and one in PR; all six identified as African American and four also identified as Latino; two were TGW). Of note, two separate manuscripts emerging from this study focus exclusively on TGW [39, 40].

Table 1 Demographic information of full sample and intervention group participants in ISUM
Full size table

Table 1 shows that, on average, participants were in their mid-30 s and had some college education. The majority belonged to an ethnic minority group and identified as gay men; 10% were TGW. Two-thirds of participants were employed.

At baseline, of the 272 enrolled participants, 59 (22%) reported having used self-tests themselves, and 13 (5%) had used self-tests to test a partner. Focusing next on the 130 participants who returned for Visit 3, Table 2 shows results to similar questions asked pre- and post-trial to assess participants’ confidence in their skills to judge and manage HIV self-test-associated violence.

Table 2 ISUM participants pre-and post-trial confidence skills to judge and manage HIV-self test associated violence
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At the Visit 3 follow-up, 130 intervention group participants reported having been sexually active during the three-month intervention period. Of them, 114 (88%) participants used the self-test with at least one potential sexual partner. There were 79 participants who had sex with at least one partner whom they did not ask to test (detailed elsewhere [36]). Only 15 (19%) of them feared that the partner might react negatively. A total of 870 partners were asked in person to self-test. Seven (6%) of the participants reported that they had found it very hard to judge whether a sexual partner could become violent over taking a rapid HIV test. None reported that it had been very hard to avoid violent situations that might have arisen over taking a rapid home HIV test. Only one respondent (1%) said it had been very hard to handle a violent situation that occurred as a result of using or proposing to use a rapid home HIV test.

Upset or Angry Partner Reactions

At Visit 3, 71/130 (55%) participants reported asking a potential sex partner to use self-tests via chat, text, etc. Thirty-two (45% of 71) reported that potential partners got angry or upset (n = 18 reported “a few,” n = 7 reported “some,” n = 1 reported “many,” n = 4 reported “most,” n = 2 reported “all partners”). One hundred-and-eleven (85% of 130) participants asked a potential sex partner to use HT in person. Thirty-eight (34% of 111) reported that at least one partner got angry or upset. In total, 113/870 (13%) of partners got angry or upset. (Mean = 2.97, Mdn = 2.00, range 1–8 partners).

Aggressive or Violent Partner Reactions

Seven (6%) participants (6 in PR and 1 in NYC) said that at least one of their partners (PR: Mean = 2.33, Mdn = 1.50, range 1–7; NYC: Mean/Mdn = 2.00) got physically violent due to their request to use the HIV self-test. In total, 16/870 (2%) partners reacted violently.

Discussion

In this study, mainly ethnic minority MSM and TGW at high-risk of HIV infection, due to unprotected sexual behavior with multiple partners, had the opportunity to use HIV self-tests with potential sexual partners as an HIV risk-reduction approach. Before the trial, between 87 and 91% of study candidates felt confident that it would be fairly or very easy for them to avoid or handle potential violent situations. Only 2% of all potential study participants screened out because they felt it would be very hard to avoid or handle potential partner violence related to self-testing. Furthermore, during the 3-month trial period in which participants had HIV test kits available, 88% actually proposed test use to a partner and, for the most part, partners agreed to take the test. Although one-third of the partners were upset or annoyed at the proposition, only 6% of partners became aggressive or violent. Nevertheless, no incident resulted in serious injury and only one participant retrospectively evaluated the incident as very hard to handle. These results give further support to those reported by Chanda et al. [34] from their study of sex workers in Zambia, in which a surprisingly low number of sex workers reported violent incidents associated with self-test use.

Thus, from a public health perspective, our results provide further evidence to allay fears that proposing the use of self-tests to prospective sexual partners could result in a significant proportion of violent incidents that place people in danger. In our study, participants were first shown a video demonstrating how to discuss the use of self-tests with different types of partners and in different circumstances. The availability of such information could help prepare individuals by giving them strategies to use when broaching the topic with partners. Furthermore, as HIVST becomes more routine, partners may become less surprised at being asked to take the test, which may counteract aggressive reactions. Our findings demonstrate that HIVST is an additional tool to curtail the spread of HIV. In particular, its use among partners generates an opportunity to discuss HIV, present concerns, and negotiate agreements on how to proceed.

In our study, participants were given the test kits to use with partners free of cost. In the US, the $40 market cost per kit may make their use with multiple partners unaffordable. Hence, there is a need to reduce or subsidize the price of HIV self-test kits so they can be accessible to those who want to use them with partners.

Limitations

This study was conducted in urban areas of the USA where the human rights of MSM and TGW are supported by state and federal laws, which may increase this key population’s self-confidence. Key populations at risk for HIV in parts of the world where sexual diversity is criminalized and punished will probably face additional problems that require further study and intervention.

Conclusion

Our findings demonstrate that MSM and TGW can successfully use HIV self-tests with sexual partners with low rates of violence. In the scarce instances in which a partner became physically violent, participants overall felt prepared to handle the situation. These results provide further evidence that the HIV self-test can be both a useful and a safe tool to aid in serosorting and HIV prevention among this population.