The authors have declared that no competing interests exist for this study.
¶ Membership of the
Promoting consistent HIV testing is critical among young, Black Men Who Have Sex With Men (MSM) and transgender women who are overrepresented among new HIV cases in the United States. New HIV test options are available, including mobile unit testing, one-minute testing, at home or self-testing and couples HIV testing and counseling (CHTC). In the context of these newer options, the objective of this study was to explore whether and how preferences for specific characteristics of the tests acted as barriers to and/or facilitators of testing in general and consistent testing specifically among young Black MSM and transgender women aged 16 to 29.
We conducted 30 qualitative, semi-structured, in-depth interviews with young, Black, gay, bisexual or MSM and transgender women in the New York City metropolitan area to identify preferences for specific HIV tests and aspects of HIV testing options. Participants were primarily recruited from online and mobile sites, followed by community-based, face-to-face recruitment strategies to specifically reach younger participants. Thematic coding was utilized to analyze the qualitative data based on a grounded theoretical approach.
We identified how past experiences, perceived test characteristics (e.g., accuracy, cost, etc.) and beliefs about the “fit” between the individual, and the test relate to preferred testing methods and consistent testing. Three major themes emerged as important to preferences for HIV testing methods: the perceived accuracy of the test method, venue characteristics, and lack of knowledge or experience with the newer testing options, including self-testing and CHTC.
These findings suggest that increasing awareness of and access to newer HIV testing options (e.g., free or reduced price on home or self-tests or CHTC available at all testing venues) is critical if these new options are to facilitate increased levels of consistent testing among young, Black MSM and transgender women. Addressing perceptions of test accuracy and supporting front line staff in creating welcoming and safe testing environments may be key intervention targets. Connecting young Black MSM and transgender women to the best test option, given preferences for specific characteristics, may support more and more consistent HIV testing.
New HIV infections among gay, bisexual and other men who have sex with men (MSM) ages 13 to 24 increased by 133% between 2001 and 2011 in the United States (US) (Johnson et al., 2014) [
HIV testing is the entrance point to a range of HIV prevention and treatment options, such as pre-exposure prophylaxis (PrEP) and ART (antiretroviral therapy) treatment, and is therefore a critical public health tool to help contain the HIV epidemic in the US [
Young Black MSM and transgender women are more likely to be unaware of their HIV infection [
Barriers to HIV testing among Black MSM and transgender women include fear, stigma, disclosure of sexual/gender identity, lack of anonymity, concerns about confidentiality, discomfort talking to a counselor and concerns about the accuracy of rapid tests [
The emergence in recent years of several new testing methods and technologies have increased HIV testing options, which may contribute to the goal of increasing consistent testing among higher risk groups. These newer methods address some of the established barriers to HIV testing described above. For example, home-based or self-testing uses a 20-minute, oral fluid-based technology and allows individuals to operate the test and receive results privately and at their convenience, alleviating the burden of having to access traditional testing venues or a health care provider, which may elicit stigma and confidentiality concerns [
In the context of these newer options and the need for consistent HIV testing among high risk MSM, we explored whether and how preferences for specific characteristics of the tests acted as barriers to and/or facilitators of testing in general and consistent testing specifically among young Black MSM and transgender women aged 16 to 29. We also evaluated perceptions of the “fit” between available methods and their characteristics and participants’ past and future testing needs. The findings presented here result from a formative research phase of a larger study designed to inform the development of a communication technology-based intervention to increase consistent HIV testing among this age group.
Participants were recruited between February and May 2014 through online and mobile applications (apps) used by young, Black MSM and transgender women in the New York City metropolitan area (e.g., Craigslist, Black Gay Chat [BGC], Facebook, etc.) and the homepage of a local organization for gay men of African descent. Face-to-face recruitment was used to reach the participants aged 16 to 19. Recruitment language and ads explicitly included transgender women. Using these methods, 396 individuals (MSM, N = 378; transgender women, N = 18) completed the online screener and 78 (20%) were eligible. Face-to-face recruitment occurred at two events (a kiki ball or mini-House Ball, and at an outdoor venue, “The Piers”, in lower Manhattan) where young, Black MSM and transgender women often gather; 18 contacts were collected and 14 were eligible (78%).
To be eligible for the study participants had to: (1) report being male at birth; (2) self-identify as Black, African American, Caribbean Black, African Black or multiethnic Black; (3) be able to read and respond in English; (4) be between 16–29 years of age; (5) not be known to be HIV-infected; (6) report insertive or receptive anal intercourse with a man or transgender woman in the last 12 months; (7) reside in the NYC metropolitan area; and (8) provide informed consent or assent for the study. Participants who were enrolled in any other HIV research study involving HIV testing or who had been a participant in an HIV vaccine trial were not eligible. Sexual identity was not a criterion, as self-reported behavior was used to establish eligibility. To provide appropriate contrasts, we attempted to interview participants who had and had not tested for HIV at least once in the last six months. The recruitment methods resulted in a sample of 30 participants, which was the target sample for the study and where we reached saturation with regard to the themes emerging around preferences for, barriers to and facilitators of HIV testing in the context of newer options.
Participants who screened as preliminarily eligible were contacted by telephone to confirm eligibility and set up a study visit appointment. All participants provided written informed consent or assent and the study was reviewed and approved by the Institutional Review Boards (IRBs) of all participating institutions (New York Blood Center, Binghamton University, and Public Health Solutions). Eligible participants under the age of 18 years were considered mature minors by the IRBs and thus provided written informed assent. After providing information about the study and prior to obtaining assent, the minor participant was introduced to and met with the minor advocate. The advocate was a staff member who was not involved in the assent or this study’s procedures. All information provided by the participant during the meeting with the advocate was confidential and not shared with any other staff members. At the end of the study visit, the participant was provided the opportunity to meet with the advocate again and given the advocate’s contact information for any future questions. Eligible participants completed a 60-minute, qualitative, semi-structured, in-depth interview and a brief web-based survey on demographics, health characteristics, and sexual behavior. Participants who completed the study visit received $30 compensation for their time, along with a two-way Metrocard for travel. Interviews were conducted by trained and experienced interviewers in a private room and were audio-recorded and professionally transcribed. All interviews were checked for accuracy by the primary qualitative study co-investigators (VF and LW).
The in-depth interview was semi-structured, employing a guide that explored a variety of issues including: personal background; experience of and connection to communities; thoughts and feelings about HIV testing and most recent testing experience; experiences with and perceived facilitators of and barriers to newer testing methods (e.g., couples testing, also known as “Testing Together”), venues (e.g., mobile units), and operators (e.g., self-testing); and use of and thoughts about web- and smart phone app-based technologies for health and testing purposes. The interview guide was based on a conceptual model that identified factors at four levels, the test level, the individual level, the situation level, and the socio-contextual level. At the test level, we asked questions designed to elicit accounts of the influence of test characteristics, such as availability, cost, fluid used/specimen collected, test operator, familiarity, complexity, time for results, and privacy/confidentiality on testing and test preference. At the individual level, we explored the influence of fear, anxiety, stigma, past experiences and “type” of tester, [
Using a grounded theoretical approach, we applied both contextualizing and categorizing strategies to code and analyze the in-depth interview data [
The mean age of the sample was 23.7 (SD = 3.4), with one 17-year old participant and eight participants who were between 18 and 21 years of age; 21 participants were aged 22 to 29. Forty percent reported residing in the Bronx, 30% in Brooklyn, 27% in Manhattan, and 3% in Queens. The majority (87%) self-identified as African-American, with 23% identifying as Caribbean or West Indian or 20% as Afro-Latino. Ninety-three percent of participants self-identified as male, with two participants identifying on the computer-based survey as transgender male-to-female. During the interviews, however, another two participants revealed that they self-identified as gender fluid and sometimes identified as male-to-female transgender, sometimes as female and sometimes as male.
Factor | N | Percent |
---|---|---|
23.7 | 3.4 | |
African-American | 26 | 87% |
Caribbean/West Indian | 7 | 23% |
Afro-Latino | 6 | 20% |
Other | 1 | 3% |
Male | 28 | 93% |
Transgender (male to female) | 2 | 3% |
Gay | 21 | 70% |
Bisexual | 8 | 21% |
Heterosexual/straight | 1 | 3% |
Bronx | 12 | 40% |
Brooklyn | 9 | 30% |
Manhattan | 8 | 27% |
Queens | 1 | 3% |
Staten Island | 0 | 0% |
27 | 89% | |
High school degree or GED | 7 | 23% |
Technical School | 2 | 7% |
Some college | 15 | 50% |
College degree or more | 4 | 13% |
12 | 40% | |
21 | 69% | |
Parents/other relatives | 13 | 43% |
Other | 2 | 7% |
9 | 30% | |
Full-time work | 10 | 33% |
Part-time work | 6 | 20% |
Not working | 10 | 33% |
Working off the books | 1 | 3% |
25 | 82% | |
private MD | 17 | 56% |
emergency department | 7 | 23% |
community clinic | 4 | 13% |
Extremely or very unlikely | 13 | 43% |
Unlikely | 11 | 36% |
Likely | 4 | 13% |
Extremely or very likely | 0 | 0% |
17 | 56% | |
29 | 96% | |
19 | 63% | |
Community health/free clinic or CBO | 14 | 46% |
Private medical doctor | 7 | 23% |
Mobile testing unit | 2 | 7% |
Emergency department, research study or other | 4 | 13% |
Whole blood draw | 11 | 36% |
Finger prick | 6 | 20% |
Oral fluid | 10 | 33% |
* totals to greater than 30, as multiple answer choices were accepted
‡ Ns for each factor are listed when one or more participant declined to answer
We confirmed results of previous research that several factors continue to act as barriers to and facilitators of HIV testing in this population. These included: knowledge of and access to HIV testing sites and test methods, fear of a reactive HIV test result, HIV stigma, and concerns around confidentiality and privacy. In terms of access to newer testing methods, the majority of participants were unaware of the CHTC option (which was not widely available at the time of the interviews), although they were open to and enthusiastic about CHTC. One participant noted its usefulness in planning for safety with a future partner, saying “I would do the Testing Together to get to know the person and where they stand.” (NO5; 24, African-American, male, Bronx, not tested P6M) Another participant noted that if the new methods were widely disseminated, they would be used, stating “I think maybe I could be—not really comfortable with it, but I feel like if it was much more available, then I would possibly take advantage of it.” (ST1; 21, African-American, male, Bronx, tested P6M) A transgender participant said in response to being told of the various testing options that there were “a lot more options than what I am aware. I’m excited. I’m excited.” (WX5; 20, African-American, gender fluid, Brooklyn, not tested P6M)
Some participants noted that access to existing testing methods was still a problem, particularly in the Bronx, with too few fixed testing sites available. One participant said, “New York City has facilities specifically for that spread around the borough, but there’s only like two a borough.” (DE4; 20, African-American, male, Manhattan, not tested P6M) Related to access to the self-test, the cost of the test emerged as a barrier, consistent with preliminary reports in the literature and our analysis of these data (Frye et al., 2015). The majority of participants expressed anxiety or nervousness when asked their “first thoughts” on HIV testing, reinforcing that the testing experience continues to be fraught with anxiety for most young, Black MSM and transgender women. One participant said, “I’m high anxiety so, you know, that will definitely get my anxiety going and stuff, just yes, worrisome.” (CD3; 28, Afro-Latino, male, Bronx, not tested P6M) Another participant simply said “fear,” whereas another stated “sickness, depression, condoms, wrap it up, and depression.” (NO5; 24, African-American, male, Bronx, not tested P6M) One stated “It’s draining.” (XY6; 22, African-American, male, Bronx, tested P6M) The role of stigma associated with testing also emerged for several participants when asked about their first thoughts on testing; one participant said “I guess shame. Even though I work with the disease itself, I’m not scared of it. I respect it. But it still holds a stigma. You don’t necessarily want that stigma attached. … So it’s not a nice feeling.” (RS9; 29, African-American, male, Brooklyn, tested P6M) Finally, as in previous research, issues related to confidentiality emerged, with some participants perceiving fixed site waiting rooms and mobile units to be antithetical to privacy, for example.
In this section, we present novel results describing how preferences for selected characteristics may constitute barriers to and facilitators of testing and explore how some of these preferences interacted with each other. We describe preferences that emerged from the data most strongly, organized by test characteristics (e.g., specimen type required, reported accuracy, etc.), individual/personal characteristics (e.g., perceived accuracy, anxiety, etc.), and the situational or contextual characteristics (e.g., venue, location, etc.).
Related to the test characteristics, factors such as type of specimen collected, reported accuracy, familiarity with the actual testing process and speed of the test results emerged as important to test preferences. Several participants expressed a strong preference for blood-based tests and venipuncture due to greater accuracy of these tests and fewer false negative test results, as compared to oral fluid-based tests. Some participants believed that blood-based tests, venipuncture with a western blot test in particular, were more sensitive, resulting in shorter window periods and greater confidence in blood-based tests. For example, one participant said:
“But like I said, with me it’s not so much the convenience and stuff like that. Sometimes I just don’t trust the results for somebody to swab your mouth and a little thing of blood to detect. I mean—I know that this has been tested for ages before we even got it, so I know that there is, you know, they know what they’re doing, but it’s just me up in my head. … I prefer to get a needle in my arm and I’ll see you in a week to ten days.”
(BC2; 29, African-American, male, Bronx, not tested P6M)
Expressing greater confidence in blood-based rapid tests, another participant said,
In terms of situational or contextual characteristics, factors such as relationship status, past testing patterns, prior negative experiences with testing (e.g., specific counselors or providers and mobile units especially), counselor skill and compassion, and venue culture (e.g., courteousness, confidentiality, etc.) emerged as important to preferences for specific testing methods or test characteristics. Of special importance for several participants was the relationship they developed with their counselors and/or perceived attitudes of counselors towards the clients. One participant who sought testing every four months noted, “I mean it’s one of those—they’re there to do their jobs. So it’s not like they’re enthusiastic or they have enthusiasm to do the test for you. So it’s like a regular job for them.” (GH7; 25, African-American, male, Bronx, tested P6M) Counselor skill at taking a sample emerged as well in terms of wanting to return to either the venue and/or use the specimen collection method again. The same participant described an adverse oral fluid specimen collection experience where “the lady doing it—because they’re supposed to do it for you. So when they do it, it looks like they’re fighting with your mouth…and I’m like, ‘Is this really supposed to happen?’” (GH7; 25, African-American, male, Bronx, tested P6M) Another participant said that the attitude of the clinic workers to their roles was important noting:
“I went to one in [NYC neighborhood] and I really didn’t like it. [Why not?] I don’t know. The whole environment, the people that were there, and the workers, they weren’t—they sounded like they were pissed the whole day, so I was like, ‘This is not the place for me.’
(HI8; 26, African-American, male, Manhattan, tested P6M)
Other participants noted that selected testing venues, specifically mobile testing units, were not conducive to confidentiality, comfort, or confidence. For example, one participant who said that they would not seek a test on a mobile unit or van said:
“I don’t think I feel comfortable in vans. I just feel like vans are for delivering things that you need. I don’t think I should be getting my results while you’re parking or while you’re parked in the yellow line. It just doesn’t feel comfortable for me. It doesn’t feel like it’s real, honestly.”
(PQ7; 23, African-American, male, Manhattan, tested P6M)
The impermanence and mobility of the vans disconcerted some participants; when asked what disturbed them about the van one participant replied “Just the idea that they could just lock the doors and run off with you.” (FG6; 19, African-American, male, Brooklyn, tested P6M). Another noted, “I walk by them every single time. It’s—I don’t trust it.” (BC3; 19, African-American/Afro-Latino, male, Brooklyn, tested P6M) In contrast, a few participants appreciated the convenience and easy access that mobile testing units provide. One participant who was never tested said they would feel “less exposed” when testing on a van, suggesting that they did not want to be seen going into a fixed testing site (AB9; 20, African-American, male, Queens, never tested). Another participant noted that the vans often allowed testing with friends or had a positive energy (CD4; 17, Caribbean/West Indian, male, Bronx, not tested P6M).
In addition to identifying characteristics of the tests and situation that drive preferences for testing methods, we asked participants about hypothetical preferences for various methods and test characteristics at different stages of their lives. Participants believed that they may benefit from a range of test options, noting that some methods would be good for them at different times in their lives. For example, a few participants felt that their current living situations would preclude their use of a self-test; for example, one participant noted “And the at-home test, my parents know that I’m sexually active and I identify as a homosexual, but I don’t think I would want to do it while they’re there…I don’t want them questioning anything like, “What are you doing?” I don’t want to have to go through those conversations.” (FG6; 19, African-American, male, Brooklyn, tested P6M)
In contrast, another participant imagined that they would combine self-testing at home (using oral fluids) with venipuncture at their health care provider’s office at a different stage in their life:
“Okay, the oral tests I would probably do every once in a while, at home, but, you know, to get the blood draw, I would probably do it every time I had my doctor’s visit. That would be the only times that I would change it up.”
(CD3; 28, Afro-Latino, male, Bronx, not tested P6M)
Another resident of the Bronx noted that having access to the self-test would allow them to test at home and would save them time during life stages characterized by time pressure and a hectic schedule (DE4; 20, African-American, male, Manhattan, not tested P6M).
Most participants indicated that CHTC (with a sex partner) would be of interest at time of life when they were partnered or “settled down,” although some said that the complexity of and commitment inherent in the method, specifically testing with a sex partner and discussion of sexual agreements, etc., would be a barrier. Further, the issue of trust while testing with a sex partner or friend emerged as a strong barrier to using this method at any life stage for several participants. With that said, a few participants reported that CHTC was an ideal way to test, particularly in the event of a reactive test result; one participant said this of having a friend or partner present:
“You have people to fall back on. You always want somebody to talk to after, you know, on the train ride home or something. People could calm you down. They could tell you things, they could tell you experiences, share stories.”
(QR8; 22, African-American, male, Brooklyn, tested P6M)
We explored with participants whether the existence of one of the options described, including the self-test, CHTC and the 1-minute test, would have increased the chance that participants would have tested at a time in their lives when they “thought they should have tested, but had not.” One participant noted that the 1-minute test would have made it more likely that they would have tested; another participant said they would have used the self-test to keep things private when they were younger and in need of testing. Similarly, another said that if the home test had been available when he was younger, he would have tested sooner. Another participant indicated that in the past if a testing option had been nearby, quick and convenient and he’d had a higher risk sexual experience, he would have been more likely to test at a time when a test was needed but not accessed. In terms of options that are missing from the current testing environment and that would potentially increase consistent testing, one participant lamented that results could still not be delivered by phone, which would reduce anxiety associated with receiving results. One participant noted that a more sensitive test would make them more likely to test more frequently, saying “if they said maybe it can be detected, I guess, in like a shorter time frame, then, I guess, that would maybe make me go every two or three months, if I was like really, really active.” (IJ9; 21, African-American, male, Manhattan, tested P6M) Most participants could not imagine another testing option that would significantly increase their chances of testing or testing consistently. One participant said:
“I’m not really sure that anything’s missing, because I think they’re all kind of convenient in a way. So, it’s like there’s not really a reason why you can’t go get yourself tested. They’re kind of available everywhere you go now at this point. So, it’s like there’s no excuse to not get tested.”
(CD4; 17, Caribbean/West Indian, male, Bronx, not tested P6M)
Finally, when asked if “certain tests were a better fit for certain people”, most responses focused on use of the home or self-test. Numerous participants indicated that the self-test is useful to those who could afford the higher price, noting that they would gain the benefit and flexibility inherent in the test. A few participants stated with concern that self-testing may be preferred by a “certain type of person” (one participant described them as “secret closet people” (MN4; 29, African-American, transgender, Brooklyn, tested P6M), one who does not intend to disclose a positive result. They speculated that the type of person who uses a self-test may be afraid to be seen attending a clinic or asking for a test from their doctors. In terms of the preference for blood-based or venipuncture, one participant articulated what was described by several other participants: that the person who strongly prefers venipuncture is the person who “worries a lot, that needs to know and, you know, that wants to do it the perfect way the first time, that kind of a person.” (CD3; 28, Afro-Latino, male, Bronx, not tested P6M)
The numerous HIV testing options that are now available provide more choices to individuals at higher risk for HIV infection, for whom consistent HIV testing is recommended. However, there is limited understanding of how newer testing options are perceived, including what aspects of the new options are preferred, and how these preferences could increase the likelihood of testing and/or consistent testing [
A driver of preference for blood-based specimen collection was consistently described in terms of the greater perceived accuracy of blood as opposed to oral fluid sample-based tests. This preference was evident among both recent and not recent testers, suggesting that it acts as a barrier to testing for some but not all potential testers. It is likely that, despite the young age of the participants and thus relative lack of testing experience, the actual reduced sensitivity of oral fluid tests has been communicated to them and may be acting as a barrier to testing venues or methods that rely on oral fluids [
Two related situational or contextual factors emerged as drivers of preference and desire to return for future testing: counselor interpersonal skills and venue culture. Several participants reported that they felt that HIV test counselors were only “doing a job” or “going through the motions,” suggesting that the importance and gravity of the testing process was not appreciated consistently by counselors and reflected in interactions with clients. This perception, based on actual experiences, may inhibit future consistent testing. Although recent research reported that the counseling component of voluntary counseling and testing (VCT) does not prevent incident STIs, [
Two additional findings emerged that have implications for HIV prevention and social services. First, the young people sampled here were able to imagine using a range of test approaches at various points in their lives, based on where they were in their lives. Although some participants noted that reluctance to test was unconnected to access and knowledge, and rather reflected fear of HIV, several stated that had the self-test been available to them when they were younger they would have used it. Similarly, the lack of easy access to all the testing approaches was perceived as a barrier to testing for very young, emerging adults. This strongly suggests that in addition to efforts to increase knowledge of and access to the full range of testing approaches, the public school system should integrate information on all testing approaches currently available as well as provide access to HIV testing in high schools and provide HIV self-tests to students who seek them [
There are several limitations that deserve mention. First, despite an effort to focus on younger people, we interviewed just one person younger than age 18 and thus our findings derive primarily from a young adult population. Along these same lines, just four participants self-identified as either transgender (male to female) or gender fluid. Given the significant heterogeneity within the transgender population, for example preferred gender identity, pre-operative or post-operative status, health care history, we cannot draw strong conclusions related to the communities and subpopulations within the transgender population. In addition, we recruited participants primarily using web-based approaches, supplemented by in-person recruitment efforts to reach younger participants. Thus, the sample may over-represent individuals who gather on-line, as opposed to people who gather face-to-face at venues. This sampling strategy was, however, designed to reach young MSM and transgender women who would be likely to encounter our web-based testing intervention. Related to sampling, the results cannot be generalized to the larger population of young, Black MSM and transgender women; rather, these qualitative analyses are meant to generate novel findings around preferences for specific test characteristics in an era of increased testing options. Finally, most of our sample had tested for HIV within the last six months and few had direct experience with the testing options that we explored in the interviews. As CHTC and self-testing options are scaled up and formally disseminated, it will be important to conduct ongoing research into how these options are experienced by the groups at highest risk and most in need of testing options. If added options continue to be perceived as options for other people or other times of life, they will do little to increase the consistent testing that is required to trigger clinical evaluation for PrEP.
These findings suggest that increasing awareness of and access to newer HIV testing options (e.g., free or reduced price on home tests or CHTC available at all testing venues), among young, Black MSM and transgender women is necessary if these new options are to facilitate increased levels of consistent testing in these at-risk populations. Effective dissemination of the methods, leading to easy access and uptake, is critical to this goal [
(DOC)
The