“I think that I have a good understanding of how to protect myself” – A Qualitative Study about HIV Risk Perceptions among Men and Gender Diverse Individuals who Have Sex with Men

Abstract

This qualitative study aimed to determine how men and gender diverse individuals who have sex with men describe their perceived risk of HIV and what factors influence this risk assessment. We conducted in-depth, virtual interviews with 18 HIV-negative individuals from Philadelphia, eligible for or taking PrEP. The interviews assessed the participants’ understanding of their HIV risk, using thematic analysis to deductively code and extract themes. Three themes emerged: 1) participants expressed both deliberative and affective risk perception before and after sexual encounters; 2) participants linked HIV knowledge to risk perception and stigma; 3) participants connected intrinsic and extrinsic factors to risk perception differently. Participants endorsed low overall risk perception, while also describing moments of high affective risk perception after sexual encounters in which they were not able to implement their preferred prevention strategies. Future research should explore helping individuals transform affective risk perception into empowerment around sexual health.

Introduction

In 2019 the United States announced an initiative to end the Human Immunodeficiency Virus (HIV) epidemic, aiming to reduce new infections by 90% by 2030 (Office of Infectious Disease and HIV/AIDS Policy, HHS, 2021). Progress on lowering the incidence of HIV had stagnated prior to this announcement, especially among men and transgender women that have sex with men (Centers for Disease Control and Prevention, 2020). One reason for this stagnation may be the incomplete implementation of HIV pre exposure prophylaxis (PrEP), with certain populations of men who have sex with men (MSM) benefiting from greater access and adoption than others (Ezennia et al., 2019; Huang et al., 2018; Smith et al., 2018). MSM face numerous barriers to PrEP initiation both at the structural, e.g. lack of health insurance (Kelley et al., 2015; Pinto et al., 2019; Russ et al., 2021), and the individual levels, e.g. low HIV risk perception among PrEP-eligible individuals. Researchers have found that low interest in and adherence to PrEP are associated with low risk perception (Lockard et al., 2019; Nieto et al., 2020; Whitfield et al., 2018). Similarly, qualitative and quantitative studies demonstrate that higher risk perception is associated with greater interest in PrEP (Kwakwa et al., 2016; Underhill et al., 2018), PrEP initiation (Golub et al., 2019), and PrEP adherence (Di Ciaccio et al., 2019; Wood et al., 2019).

Risk perception is an important element in multiple theories of behavior change (Glanz et al., 2015; Pantalone et al., 2016). Broadly, these theories hypothesize that a sense of vulnerability to a disease, such as HIV, precedes implementing health behaviors (e.g. PrEP) that mitigate the chances of disease acquisition. Some HIV prevention interventions have therefore tried to modify individual risk perceptions to increase the adoption of protective health behaviors (Blumenthal et al., 2019; Winograd et al., 2021). However, interventions targeting risk perception have had mixed efficacy in influencing behaviors (Sheeran et al., 2014), possibly due to a lack of theoretical clarity regarding the concept. First, risk perception itself is comprised of multiple components that are often conflated in behavior change research (Ferrer & Klein, 2015), including deliberative risk perception--a systematic and logical assessment of perceived susceptibility to a disease--and affective risk perception--the worry and anxiety one may feel about a disease (Ferrer & Klein, 2015). Perceived susceptibility, meanwhile, reflects how individuals negatively weigh the consequences of acquiring a disease (Miles, 2020). Second, cross sectional studies cannot account for change in risk perceptions over time, nor can they determine the causal effect’s direction between behaviors and risk perception (Goldenberg et al., 2018; Newcomb & Mustanski, 2014). Third, behavioral theories that incorporate risk perception often place the locus of behavioral control on the individual, rather than the structural, environmental, or social factors that impact behavior (Huebner & Perry, 2015; Pantalone et al., 2016). It is unclear to what extent people internalize this message of individual behavioral control when they assess their own risk perception.

Recently, researchers have found the way people perceive their risk for HIV to be highly complex. Several studies found a mismatch between the presence of risk factors, such as a prior sexually transmitted infection (STI) or condomless intercourse, and individuals’ subjective risk perception (Hall et al., 2018; Lockard et al., 2019; Resnick et al., 2021). Instead, MSM have related their risk perception to personal factors, such as their self-confidence in implementing protective behaviors (Felner et al., 2020) and their levels of trust in their partners (Goldenberg et al., 2018). Some MSM also identified an awareness of their immutable demographic risk factors as contributing to their sense of vulnerability to HIV(Arscott et al., 2020). These studies have not addressed whether MSM primarily think about risk in deliberative or affective terms. Most studies did not include a mixed sample of MSM, or gender diverse individuals, on and off PrEP, which may influence how these individuals assess their risk.

The goal of this study was to extend prior literature and explore how men and gender diverse individuals who have sex with men on and off PrEP describe their perceived risk of HIV and the factors associated with their risk assessment. We sought to address three primary questions: 1) how do participants balance deliberative risk perception, affective risk perception, and perceived severity when describing their HIV vulnerability? 2) what factors influence HIV risk perception? and 3) do individuals view HIV risk as within their personal control? We hope the results of this study will inform interventions aimed at increasing prevention behaviors among this population and clarify the utility of modifying risk perception as part of these interventions.

Methods

Study population and recruitment:

Eligible participants were: English-speaking; assigned male sex at birth; identified as cisgender men or gender non-conforming individuals (e.g. genderqueer or non-binary) having sex with men; ages 18–35; resided in the Philadelphia area; and either self-reported taking PrEP or reported a current PrEP indication (e.g. recent STI diagnosis, condomless anal sex with a male partner, or anal sex with a male partner living with HIV) (Centers for Disease Control and Prevention: US Public Health Service, 2018). We excluded transgender women from this study, as researchers have been called to recognize the unique experiences of trans women navigating HIV prevention barriers rather than aggregating their data within samples of MSM (Rael et al., 2018; Sevelius et al., 2016).

We used purposive recruitment to assure our sample was racially diverse and contained a similar number of participants on PrEP and PrEP-eligible participants not currently taking the medication. We posted study information on social media; contacted former research participants in HIV prevention studies; and relied on LGBTQ+ community organizations and stakeholders to circulate study material. Recruitment occurred from July-October 2020, ending when the study team determined we had reached interview saturation of themes. Interested individuals completed an online questionnaire, after which their eligibility and interest was confirmed by a study team member. Due to the COVID-19 pandemic, we conducted all study elements virtually. Participants were emailed a fifty-dollar gift card for participation. The University of Pennsylvania Institutional Review Board approved our study protocol.

Study design and procedures:

All participants completed electronic informed consent and a brief demographic questionnaire prior to their interview. Our interview guide had three parts. Part one assessed risk perception in the participants’ daily lives, and included questions about the participants’ sexual health goals, how often they think about HIV, and their general approach to HIV prevention. We concluded the first section by asking participants two validated questions targeting different HIV risk perception components (Napper et al., 2012): “How much do you worry about getting HIV?” (affective risk perception) and “What do you think are your chances of getting HIV in the next year?” (deliberative risk perception). Likert-scaled responses ranged from one through five (1= “very low”; 5=“very high”), and participants were asked to elaborate on their numeric responses. Part two elicited the impact of HIV risk perception on participant decision making during sexual activity, using a timeline follow back (TLFB) approach (Carey et al., 2001; Goldenberg et al., 2016). In this section, participants shared their sexual encounters from the past 30 days on a calendar via screensharing, and were asked in-depth questions about their decision making during the encounter. Participants who did not have sex in the past 30 days did not complete a TLFB calendar, but were asked similar questions about prior typical sexual encounters. Part three included questions about the participants’ experiences discussing their sexual health and HIV risk with healthcare providers. Each interview concluded with a chance for participants to provide feedback about their experience. The interview guide is attached as an appendix.

We piloted the interview guide with three gay men in Philadelphia prior to starting the study. The lead author, a medical student who identifies as a white, gay, cis man, led all interviews. The interviews were conducted virtually using Bluejeans video conferencing software.

Data analysis:

All interviews were transcribed by the study team or a professional transcription service, Datagain (Secaucus, NJ), and transcripts were double-checked for accuracy against the recording by separate team members. We utilized a thematic analysis approach (Braun & Clarke, 2012), using NVIVO 12 (QSR International, 2018) for data organization and coding. The study team used the interview guide, prior HIV risk perception literature (Ferrer & Klein, 2015; Goldenberg et al., 2018; Storholm et al., 2017), and a thorough reading of the interviews and interview field notes to deductively develop an initial codebook. Two team members (DR and AEL) independently coded each interview, meeting frequently to resolve disagreements, refine code definitions, and add emergent codes. A kappa statistic was assessed after each interview. By the eighth interview coded, the coders reached a consistent kappa of >0.75, and the remaining interviews were single coded, using a constant comparison technique to assure newly coded text matched previously coded responses. Three study team members (DR, AEL, and MA) then conducted a focused analysis of the interviews to specifically identify descriptions of HIV vulnerability (e.g. affective vs deliberative risk perception), factors impacting risk perception, and the degree of personal control participants noted when discussing risk. The broader study team met weekly to discuss emerging themes from this analysis until reaching a consensus on the final themes. We then completed a coding comparison to assess how these themes differed between participants taking PrEP and those not on PrEP.

Results

The participants’ (n=18) mean age was 28. Ten were taking PrEP at the time of the interview (full demographic characteristics in Table 1). Thirteen participants referenced previously participating in HIV-related studies and/or having worked or volunteered with LGBTQ+ organizations. The mean response to the Likert HIV anxiety question was 2.2 (SD ± 1.2, range 1–5) and the mean perceived HIV susceptibility response was 1.6 (SD ± 0.8, range 1–3.5).

Table I:

Sociodemographic characteristics of participants (n=18) interviewed during summer 2020

Description		N (%) out of 18
Age		Mean: 28; SD ± 3.6; range 21–34
Race/ethnicity
	Black	9 (50%)
	White	7 (39%)
	Other	2 (11%)
	Hispanic/Latinx	2 (11%)
Gender identity
	Cis man	15 (83%)
	Non-binary	2 (11%)
	Genderqueer	1 (6%)
Sexual Orientation
	Gay	15 (83%)
	Bisexual	3 (17%)
PrEP Status
	Currently on PrEP	10 (56%)
	Not on PrEP	8 (44%)
Insurance status
	Private insurance	8 (44%)
	Medicaid/ state sponsored	8 (44%)
	No insurance	1 (6%)
	Unsure	1 (6%)

While claiming low overall risk perception, participants listed “safe” sexual encounters and feeling “comfortable” with partners as their main sexual health goals. Discussions about safety and comfort surrounding sexual encounters yielded three themes as they relate to risk perception: 1) participants expressed both deliberative and affective risk perception before and after sexual encounters; 2) participants linked HIV knowledge to risk perception and stigma; and 3) participants connected intrinsic and extrinsic factors to risk perception differently. Illustrative quotes are included in the text, with participants identified by their unique ID, age, and PrEP status.

Theme 1: Participants expressed both deliberative and affective risk perception before and after sexual encounters

Participants detailed numerous situations in which they recalled deliberative and affective HIV risk perception. Participants generally experienced deliberative risk perception ahead of sexual encounters, while affective risk perception arose most clearly after certain sexual encounters.

Subtheme 1: Deliberative risk perception -- from checklists to “having a rapport”

Participants described making frequent deliberative calculations about actions they could take to lower their risk of HIV acquisition and ensure their sexual encounters were safe. A wide range of strategies were used. Some participants relied on self-created “checklists” to screen partners before sexual encounters. These deliberative calculations emerged from observations participants made about their surroundings and their partners’ responses. For example, a participant shared how he tried to verify the partner’s responses to his checklist questions prior to sex:

But I’ve tended to be very cautious in terms of, you know, checking with someone in hopefully one or two ways to see if they actually – if they say they’re on PrEP, are they actually on PrEP. Like do they have their PrEP by their nightstand? Or if Grindr says they’re on it, are they saying the same thing in person? (624E, 29, on PrEP)

Other participants relied on cues in their exchanges with partners predetermined to signify that it was safe to proceed with a sexual encounter. Some participants noted trusting the “vibe” or “energy” of a potential partner. As one participant stated, I “try to have at least some rapport and understanding of where [my partner and my] bodies are” in order to reduce the risk for HIV during sex (2AB2, 28, not on PrEP). One common sign participants discussed was a reciprocation from the partner that safety was a concern for them too. If a potential partner responded positively to questions about protection or HIV status – or even brought up the topics themselves – participants were much more likely to choose to engage with this person:

I’ve been in situations where people will say, “Gah, why’re you asking all these questions [about HIV]?” Or someone may say, “Does it really matter?” And I’m like “Yes! It does, and the fact that you don’t think it does tells me that you’re probably not someone that I wanna be engaging in sexual activity with.” (C39B, 28, on PrEP).

In summary, whether using formalized steps or instinctive impressions about partners, participants clearly described a deliberative process for sexual encounter safety even when reporting low perceived risk for HIV acquisition.

Subtheme 2: Affective risk perception acutely rises following “heat of the moment” decision making

While participants generally reported low overall affective HIV risk perception, most also recalled instances in which their affective risk perception spiked. These instances of high anxiety about HIV usually occurred when strong emotional motivators – such as being “horny” or worrying about “ruining the mood” by asking about HIV status – outweighed the preferred protection strategies for a given sexual encounter. Most participants described experiences in which their decision making in the “heat of the moment” differed from their ideal decision making during impartial moments of reflection. As one participant succinctly said:

… ‘cause I don’t always keep protection on me. So, if I met someone – like if I’m at my partner’s house or something or somewhere else, and I know there’s no protection involved, then I’ll try to put [sex] off. But sometimes, you know, temptation is like – it’s the worst. (98D2, 33, not on PrEP).

Instances of potentially unsafe sex induced strong affective responses. In fact, the strongest suggestions of high HIV risk perception in this study – specifically affective HIV risk perception – occurred when participants spoke about their “panicked” and “scared” reactions to these sexual encounters:

…Okay so initially when I started to become more sexually active [before starting PrEP] that’s when I… had a lot of panic moments… So, I went to my doctor like every month [to get tested]. (AABA, 28, on PrEP)

…[the worry] is necessarily not always [during the sexual encounter], but like after. And it’s always ‘the what if’? Basically, that’s what it is. The what if. “What if? What if? What if?” (37AF, 28, not on PrEP).

As illustrated in the quote above, worry about HIV rarely occurred before or during the encounter. Instead, HIV worry crept up after an encounter, and for some participants, influenced subsequent behaviors, such as HIV testing and pursuing post exposure prophylaxis (PEP) or PrEP prescriptions.

Subtheme 3: Participants attributed changes in risk perception to starting PrEP

For most participants, starting PrEP had a demonstrable impact on both their safety calculations and worry about HIV. For example, one participant stopped engaging in a thorough screening process of partners prior to having sex and stopped worrying about the possibility of a positive HIV test result after having unprotected sex:

So, I got rid of condoms entirely, and I also would say that as far as when it comes to talking… about sexual health with potential partners that I may be sleeping with, um, I think that the conversation around that is… almost non-existent anymore unless they bring it up… Obviously every three months for the PrEP I need to get an HIV test -- but it’s no longer something that I even think about. I know it’s going to come back negative, whereas before I was on PrEP every time I would get an HIV test, I would be, like, very anxious, stressed out, waiting for the results. (4FB2, 34, on PrEP)

Other participants on PrEP maintained deliberative practices to screen partners and/or insisted on wearing condoms with each sexual encounter. These participants generally expressed a higher risk perception for non-HIV sexually transmitted infections than participant 4FB2 above.

You know, untreated gonorrhea can cause a lot of internal problems… making people infertile and everything. [So], I feel like it’s just as important, you know, protecting yourself against gonorrhea, chlamydia, as it is protecting yourself against HIV… protecting myself against all of them are all on the same boat for me. (8C79, 21, on PrEP)

Other participants on PrEP specifically mentioned protecting a primary partner while being in an open relationship as a reason to remain cautious about STIs. Nonetheless, these participants continued to feel less anxious about sex after starting PrEP. Participant AABA, who earlier discussed having a lot of “panic moments” before starting PrEP, began a relationship with a partner living with HIV in part due to the trust he had in PrEP. This more relaxed attitude about sex is summed up below:

So, [PrEP] just makes me feel so comfortable. Like I feel like I have been more sexually liberated because of PrEP. I’ve actually taken more adventurous steps in my sexual life because of PrEP. Um and it just... it just feels comforting, you know. (D266, 30, on PrEP)

In summary, PrEP appeared to shift the deliberative risk perception focus for some participants from HIV to other STIs, while dampening the anxiety participants felt after having sex or before getting tested for HIV. As noted below, gaining knowledge about HIV and one’s own sexual practices seemed to play a similar risk perception-reducing role for many participants.

Theme 2: Participants linked HIV knowledge to risk perception and stigma

As with regard to PrEP, participants identified their objective and experiential knowledge about HIV as impacting risk perception. This knowledge also affected how participants thought about the presence of HIV stigma in their communities, yielding two distinct subthemes.

Subtheme 1: Participants linked HIV knowledge to lower risk perception

Most participants believed they had sufficient knowledge to prevent HIV acquisition, and associated that knowledge with lower HIV risk perceptions. For some, this knowledge came in the form of concrete information about HIV prevention modalities, such as the effectiveness of PrEP or that a partner with an undetectable viral load cannot transmit HIV (U=U):

And so, you start to learn, “Oh wait, somebody, if someone is HIV positive, but has an undetectable viral load, it doesn’t matter. Um, like that is the, that is roughly equivalent to negative”… You start to understand more of these things. You start to understand that [HIV is] not as much of a boogeyman and [that] it can be -- that your risk can be reduced… (B549, 25, not on PrEP).

Other participants discussed developing a subjective sense of “awareness” or “understanding” of how they ought to protect themselves from HIV. These individuals described learning over time how to screen partners, communicate their desires, and negotiate condom use, while expressing confidence in implementing their protection strategies at the present.

I’m not too big on worrying about HIV because, like I said before, I know the proper things and the necessary steps I need to take when it comes to engaging in sexual activity now. So, I know to, you know, use condoms and sometimes stay abstinent, or have conversations with your partner about certain things. (47D3, 25, not on PrEP)

Many participants, both on PrEP and not on PrEP, spoke about accumulating both concrete knowledge and valuable lived experiences the longer they have been sexually active and part of the LGBTQ+ community. Participants believed that these insights protected them from acquiring HIV. Some participants not on PrEP even expressed comfort in engaging in sexual encounters in which HIV acquisition was possible, such as condomless anal sex, due to this knowledge. One participant said he made sure to sleep “with the right people” when asked why he rated his HIV risk perception to be low, before acknowledging that statement may be incorrect and stigmatizing to people living with HIV (FACB, 31, not on PrEP). Therefore, while not substitutes for PrEP, participants identified knowledge and experience as means to reduce their perceived risk for HIV.

Subtheme 2: Participants viewed knowledge as reducing perceived HIV severity and stigma

Gaining knowledge also appeared to lower many participants’ perceived severity of HIV. In fact, participants stated that having a high perceived severity for HIV served to stigmatize individuals living with HIV. Participants frequently mentioned loved ones living with HIV, with one participant describing these loved ones as “healthier than an ox”. These personal connections, in addition to knowledge about U=U, led participants to explicitly state that HIV is in no way akin to a “gay cancer” or a “death sentence.” Participants rejected the idea that fear should be used to motivate adoption of HIV prevention behaviors, with one participant noting:

I don’t think [telling people about their chances of contracting HIV] is appropriate to say to anybody… because it instills fear… it stereotypes people for one, and it brings judgment... I think scare tactics stopped working a long time ago. (FACB, 31, not on PrEP)

Participants believed that knowledge dissemination is the key to lowering both HIV stigma and perceived severity of HIV. For example, several participants said that getting on PrEP introduced them to other information about HIV, such as U=U, which in turn dispelled worries about HIV. Participants suggested that healthcare providers have a responsibility to demystify and destigmatize HIV as they promote HIV prevention modalities:

But in just like everyday – like any communications about HIV, it’s just like, “Here’s how you can stay negative,” but there aren’t – there isn’t a discussion of what like the real ramifications of being positive and living with HIV are... I think one way that kind of fuels the stigma is just like you can imagine it to be as terrible as you want it to be. I’ve never really had a conversation like that with a healthcare provider. It’s always been more of just like, “Okay, good. Let’s get you on PrEP.” (624E, 29, on PrEP)

These participants, whether on PrEP or not, wanted conversation about HIV to extend beyond providers reflexively offering their LGBTQ+ patients PrEP, believing that more nuanced conversations about HIV could help individuals better choose the optimal prevention strategy for themselves and reduce stigma in the community as a whole.

Theme 3: Participants connected intrinsic and extrinsic factors to risk perception differently

Participants generally identified personal actions and attributes as intrinsic factors that could explain their lower HIV risk perception, while noting that a mix of personal and external factors explain higher assessments of HIV risk.

Subtheme 1: Participants viewed HIV risk reduction as dependent mainly on intrinsic factors

As described in Themes 1 and 2, participants identified perceived knowledge and confidence in implementing prevention strategies, such as PrEP and consistent condom use, as personal actions and attributes that lowered their risk perception. This confidence is best illustrated in the following quote:

And I know who I am, and I know that if I am ever in a sexual situation with someone I make sure that I know this person, and I make sure that I’m safe enough, and that [this] person is safe enough, and that the whole situation is safe. And that’s why I don’t really worry about [HIV], because I don’t put myself in a situation… where I have to worry. I make sure I take [PrEP], and that’s why I don’t have to worry about it. (8E8C, 21, on PrEP)

As such, participants credited their actions and experiences during times they perceived their HIV risk to be low.

Subtheme 2: Participants viewed periods of higher risk perception as dependent on extrinsic and intrinsic factors

Conversely, when participants reflected on periods of higher risk perception, they identified both intrinsic and external factors as contributing to elevated risk. One external factor most participants acknowledged is the inherent risk associated with “gay sex,” though this awareness rarely impacted their day-to-day decision making. One participant, however, pointed to being “Black and gay” as his biggest HIV risk factor, recognizing that HIV risk is not solely in his control but rather a reflection of disparities due to larger social forces. Other participants continued to place a personal responsibility for moments they perceived to be higher risk. For example, one participant said that he had to ask his primary care provider for PEP due to “a stupid decision I made,” while another participant got “tired of my own shit” while reflecting on prior STI diagnoses.

Some factors linked to higher risk perception involved both elements of personal control and external influences. For instance, participants frequently classified a lack of trust in casual partners as an important reason for labeling an encounter as higher risk. Some participants suggested this lack of trust was due to external circumstances (e.g. living in a large city), while others noted that their partner selection strategies may be suboptimal:

Whereas moving to Philadelphia, everybody’s a liar. So, I’m not gonna say everybody, but you know, most people here lie... I just really can’t trust like nobody up here, I don’t. (37AF, 28, not on PrEP).

I slept with a guy who… [called] me like, “Hey, you might have chlamydia and gonorrhea”. Um, which to me means my like -- if that’s something that came up for you, odds are, I didn’t, like I didn’t pre-screen right, but whatever. (B549, 25, not on PrEP).

In short, participants credited personal actions for having low overall HIV risk perception, and both personal and external factors as contributing to moments of elevated risk perception.

Discussion

This study sought to understand how men and gender diverse individuals who have sex with men describe their perceived risk for HIV and what factors influence this perception. Thematic analysis revealed three primary themes: 1) participants expressed both deliberative and affective risk perception before and after sexual encounters; 2) participants linked HIV knowledge to risk perception and stigma; and 3) participants connected intrinsic and extrinsic factors to risk perception differently.

Though participants perceived their chances of contracting HIV as low, they acknowledged that they took deliberative calculations when deciding with whom and how to have sex. The inputs into each decision differed from participant to participant, consistent with prior research showing that risk perception factors are complex and individualized (Arscott et al., 2020; Felner et al., 2020; Goldenberg et al., 2018). Participants also acknowledged that emotional motivations (e.g. immediate desire for intimacy, fear about ruining the mood) sometimes outweighed these deliberative safety calculations. This study further demonstrates the importance of interventions that help men and gender diverse individuals who have sex with men navigate the, at times, inconsistent deliberative and emotional factors that impact sexual decision making (Bauermeister et al., 2019).

Within our interviews participants more directly addressed their affective, rather than deliberative, risk perceptions. Affective risk perception most prominently emerged when participants recalled recent spike in HIV anxiety, often following specific sexual encounters. Research shows that individuals struggle to predict days in which they will be sexually active (Parsons et al., 2015), so it is not surprising that participants in this study recalled recent sexual encounters that were unplanned and/or did not meet their pre-defined safety standards. These spikes led some participants to pursue post encounter HIV prevention options, such as testing or PEP, highlighting how behaviors can both influence and be influenced by risk perception. These moments of high anxiety persisted for some participants, who then spent time thinking through various “what if” scenarios. A troubling possibility is that those who navigate prolonged HIV anxiety are individuals who face structural barriers to accessing HIV prevention services. Research has shown that prolonged high risk perception is associated with poor mental health (Eaton et al., 2020). In a meta-analysis of research studies across different health fields, interventions that raised affective risk perception were most effective at changing behaviors when the interventions also increased self-efficacy and lowered the costs of implementing the behavior in question (Sheeran et al., 2014). As such, HIV risk perception interventions may be less effective or even cause harm if they only aim to increase perceptions of vulnerability without providing individuals with accessible prevention options to utilize.

Our study is consistent with previous literature in finding that taking PrEP may protect participants from experiencing spikes in anxiety and improve their overall sexual health (Carlo Hojilla et al., 2016; Storholm et al., 2017). Highlighting the affective benefits of PrEP is a promising strategy to promote PrEP uptake even among those who express low overall risk perceptions, but acknowledge occasional moments of HIV-related panic. These naturally occurring periods of HIV anxiety may be an optimal time for clinicians to discuss HIV prevention modalities and help patients transform anxiety into empowerment around their sexual health. For example, providers could highlight PrEP’s potential to reduce future moments of anxiety. For patients that don’t desire PrEP, providers could discuss their deliberative approaches to safe sex and how to strengthen their approaches ahead of the next encounter. These suggestions necessitate equitable access to healthcare providers during moments of high HIV anxiety, which unfortunately is lacking at the present (Elopre et al., 2017; Siegler et al., 2019).

In addition to highlighting PrEP as a reason for low HIV risk perception, participants suggested they have sufficient HIV knowledge to protect themselves from HIV. Even though HIV knowledge can reduce HIV risk perception (Ndugwa Kabwama & Berg-Beckhoff, 2015), the relationship between HIV knowledge and risk reducing behaviors is less clear (Pantalone et al., 2016). At least three reasons may explain why HIV knowledge relates to risk perception and preventive behavior differently. First, HIV prevention behaviors may be inaccessible to certain individuals due to structural barriers outside of their control, such as living in areas with limited access to condoms (Shacham et al., 2016) or LGBTQ+ competent healthcare providers (Sullivan et al., 2019). For these individuals, knowledge alone may not overcome the structural barriers to implementing prevention behaviors. Second, as seen in this cohort, decision making around periods of sexual activity is not guided only by cognitive constructs such as knowledge, but by emotional motivators as well. Third, optimism bias, or people’s tendency to discount the likelihood of a negative occurrence occurring to them (Optimism Bias - Biases & Heuristics, n.d.), may lead knowledgeable individuals to underestimate their need to adopt HIV preventive behaviors, a noted finding in many HIV prevention studies (Kwakwa et al., 2016; Lockard et al., 2019; Resnick et al., 2021). The fact that several participants in this study reported low HIV risk perception at the time of the interview while engaging in sexual encounters in which HIV infection was possible suggests that optimism bias also existed in this sample.

Limitations and strengths

Though this project was able to elucidate HIV risk perception in ways quantitative studies cannot, we must also acknowledge several limitations. Because of the challenges associated with virtual recruitment, our online recruitment efforts most easily reached individuals highly involved in other LGBTQ+ community efforts. As such, these findings may not be generalizable to other men and gender diverse individuals in Philadelphia or nationally. We also recognize that the three gender diverse individuals included in the analysis may have experienced different HIV prevention barriers than the cis men in the sample (Lefevor et al., 2019; Lykens et al., 2018), though we felt as though their insights closely matched those from the cis men. More research is needed regarding specific HIV prevention messaging for gender non-binary and expansive individuals. In addition, the virtual interview format may have negatively impacted participant responses and the interviewer-interviewee dynamic. However, virtual interviews have benefits of their own (e.g. no travel barrier, comfortable surroundings) (Brinkmann, 2014), while the TLFB approach has been validated for online use (Rueger et al., 2012). Lastly, this study’s focus on HIV risk may have led participants to overstate the role of HIV risk perception in their sexual decision making, especially since we informed participants that the lead interviewer was a medical trainee. We tried to counter this focusing effect by creating a comprehensive interview guide that did not simply focus on HIV risk and by utilizing additional coders whose public health expertise lay outside of HIV risk behaviors.

Conclusion

Given the presence of risk perception in behavior change theories and evidence of associations between PrEP uptake and risk perception, it is important to understand how risk perception could serve as an HIV prevention intervention target. Our results encourage intervention designers to proceed with caution when trying to increase preventive behaviors by simply informing individuals of their increased risk for HIV. Participants generally believed their risk for HIV to be low, identified risk perception fluctuations in their lives, and listed diverse factors that impact risk perception. This temporal and conceptual variability make it difficult to design a single intervention that matches the varied conceptualization of HIV risk. Promoting HIV preventive modalities using risk-based communication that is not congruent with how individuals conceptualize their own risk may be ineffective (Storey et al., 2014) or even stigmatizing (Golub & Myers, 2019; Mimiaga et al., 2007; Quinn et al., 2019). Participants in this study criticized any suggestion that people ought to have a high perceived severity for HIV, since this would further stigmatize people living with HIV. In addition, risk perception interventions outside of HIV seem to work best when accompanied by efforts to increase self-efficacy and reduce the cost of the intervention at hand (Sheeran et al., 2014). In this study, those who engaged in preventive behavior after moments of high affective risk perception were able to do so because they had access to HIV testing, PEP, and PrEP services. Future research into risk perception may specifically wish to explore this population’s affective risk perception, a concept that often is overlooked in comparison to deliberative risk perception. Specifically, this research may wish to explore how to help participants transform affective risk perception into empowerment for action, so that these affective emotions do not persist and impede their quality of life.

Table 2:

Main themes and subthemes that emerged from participant responses

Theme	Subtheme
Participants expressed both deliberative and affective risk perception before and after sexual encounters	Deliberative risk perception -- from checklists to “having a rapport”
	Affective risk perception acutely rises following “heat of the moment” decision making
	Participants attributed changes in risk perception to starting PrEP
Participants linked HIV knowledge to risk perception and stigma	Participants linked HIV knowledge to lower risk perception
	Participants viewed knowledge as reducing perceived HIV severity and stigma
Participants connected intrinsic and extrinsic factors to risk perception differently	Participants viewed HIV risk reduction as dependent mainly on intrinsic factors
	Participants viewed periods of higher risk perception as dependent on extrinsic and intrinsic factors

Abbreviations

HIV

Human Immunodificiency Virus

PrEP

HIV pre-exposure prophylaxis

MSM

men who have sex with men

STI

sexually transmitted infection

LGBTQ+

lesbian, gay, bisexual, transgender, and queer

TLFB

timeline follow back

PEP

post exposure prophylaxis

U=U

undetectable equals untransmissible

IMB

Information, Motivation, Behavioral Skills Model