In this paper, we presented the findings of our active-offer nurse-led PrEP program, which ran through our public health unit and STI clinic and targeted patients either with objective risk factors for HIV acquisition or who had been identified for PrEP based on nurses’ clinical judgement. We identified that 47.5% of our 261 eligible patients accepted a PrEP referral, which is lower than most published studies [33,34,35]. Our methodology may account for this outcome. In contrast to previous studies, we recruited through public health nurses completing routine STI case management, meaning that most of our patients were offered PrEP by phone from someone they had never met at the time of an STI diagnosis or potential HIV exposure. Timing and delivery of this offer may have affected uptake. Our finding about life context and PrEP uptake among patients who used PEP, moreover, reinforces the importance of ensuring that PrEP is offered when patients are open to it.
In addition, by using objective risk criteria and nurses’ judgement, patients may be offered PrEP multiple times (e.g., with clinical visits, subsequent STI diagnoses, etc.), which allows patients time to consider referral options and/or obtain additional information about PrEP. This point of repeat offers has proven successful in other studies of PrEP uptake by reducing barriers and supporting patients in moving from a pre-contemplative state to a contemplative or preparative stage [36]. This could be useful for patients in finding 3, who were unable to manage a PrEP referral at the initial point of offer, but might be more prepared at a subsequent visit or with a subsequent offer from a public health nurse. More research is needed to determine optimal timing and number of times to offer PrEP to increase uptake.
Furthermore, while our acceptance rate was below 50%, we nevertheless feel that our program was successful because the 124 patients who accepted a referral initiated PrEP when they otherwise might not have. These 124 patients did not seek PrEP, but agreed to use it after nurses raised the idea. As the number needed to treat to avert one HIV infection ranges from 20 to 40 in the PrEP literature [37,38,39], this uptake could mean that 3–6 HIV cases were averted during our 1-year study period. In our local context of a 7.6/100,000 HIV diagnosis rate and our study context of 1 HIV diagnosis per 87 patients, we might have averted 1.4 cases during our study.
Beside the purely biologic benefits of HIV prevention, PrEP counselling by public health nurses to persons at higher-risk for HIV has the ancillary benefits of social awareness and public education. Despite the fact that over half of our cohort declined a PrEP referral, all patients received the same basic points about PrEP, which could be shared within their social networks to increase reach about PrEP use and availability to others. This point adds to the utility of having public health nurses, as non-prescribers, in providing HIV prevention counselling, as it helps to develop patient capacity at an individual and group level.
Based on our thematic analysis of patients’ statements, the most common reason for declining a referral was a lack of perceiving oneself as sufficiently at risk for HIV to need PrEP. Our patients viewed the risk for HIV acquisition as a continuum, with PrEP reserved for “others” at the high-end of the spectrum. It was not that our patients denied being at any risk: indeed, they were diagnosed with STIs or accessed HIV testing and PEP based on decisions to seek care. They simply did not think that their level of risk warranted a prevention intervention involving daily medication and clinical/serologic follow-up every 3 months [1]. In other words, our patients’ decision to decline PrEP was, in part, about the balance between the risks of HIV acquisition versus the risks related to, and the investment involved with, obtaining and taking a daily medication. It is possible that more patients might have agreed to PrEP were the pill burden or clinical monitoring less intense. This also applied to the patients who felt that PrEP was potentially harmful: for them, the risks of harm from PrEP exceeded the risk of HIV acquisition and was beyond what they felt they needed for their perceived level of risk.
Our participants, however, did not engage in risk assessments in a purely epidemiologic sense. For them, risk was not just the probability of an outcome occurring; ideas about the type of person who needs PrEP pervaded their assessments, with PrEP being reserved for a reckless and dangerous “other”. These others were often viewed as persons on the social fringe who lacked self-discipline and were careless with their bodies—i.e., those “likely” to become HIV-positive [40]. Our patients thus not only declined PrEP on the basis of perceiving themselves as being low-risk for HIV acquisition, but also because they did not want to be categorized, by nurses and others, as this stigmatized high-risk other. Explained differently, nearly half of our participants declined PrEP because they had preconceived ideas of the “type of person” who required PrEP (and did not see themselves as such a person) or because they did not want to be viewed as part of a reckless othered group of, mostly gay men, who engage in practices that might transmit HIV. This point, in short, related to stigma, which refers to the possession of an attribute that serves to discredit an individual and which is the basis for social exclusion [41]. Individuals who possess certain personal and/or behavioural characteristics, such as sex with same sex partners, being in a sero-discordant relationships, or PrEP use, are considered to be outside of what is socially desirable, or conventionally “normal”, are subconsciously labelled as “abnormal”, or in this case, “risky” [41]. Stigma seemed to play a strong role in the reasons why our participants declined PrEP.
Lupton’s [40] work helps explain the relationship between stigma and risk. Building on Douglas and Castel, Lupton posited that risk connotes danger and dangerousness, with risk increasing as items become increasingly socially unacceptable [40]. Central to the conception of risk is the idea that intransgressible boundaries were breached by persons engaging in deviant acts of condomless sex with multiple male partners [40, 42]. By extension, people who possess these so-called risky attributes are considered dangerous and dirty, and become the stigmatized other against whom protection is required [35]. These are the people who crossed a boundary that is prohibited socially. The othering attached to risk, however, does not end there; it includes those deemed at high risk for the negative outcome of interest, in this case HIV [40]. That is, while persons living with HIV are stigmatized based on their serostatus, so too are those who are high-risk for acquiring the infection. This extension of othering to those who are at high-risk for HIV relates to the fact that contemporary mainstream perceptions hold that people should naturally want to and actively undertake actions to avoid, mitigate, or reduce the risks of HIV acquisition [40, 43]. In other words, at-risk individuals have a responsibility to prevent unwanted outcomes (i.e., HIV-positivity), with a failure to do so constituting irrational and reckless behaviour. This group, therefore, is stigmatized due to their potential to become HIV-positive.
What we see with PrEP, and especially our active-offer PrEP referral program, is the construction of the “at-risk person and body” [40]. We used STI diagnoses, PEP use, and clinical judgement to identify the at-risk person and actively offer them an additional prevention strategy. Seen in this way, our criteria and process fulfill what Lupton [40] suggested: a systematic way to identify and regulate deviant bodies under the guise of helping them mitigate risks that are deemed inherently negative. As might be expected, nearly half our patients rejected this process, refusing to be seen or to see themselves as at-risk, particularly those who believed they were in monogamous relationships, or who “never” have anal sex with other men. Lupton’s work [40] can be used to explain this finding as follows: in declining PrEP, the person, on the one hand, rejects a stigmatizing label (of being the at-risk other), while, on the other hand, does not acquire the responsibilities that are socially associated with being at-risk. In other words, in rejecting PrEP, patients protect their self-image and limit their responsibility, enabling them to continue status quo [40]. Lupton’s work makes rational sense of our patients’ rejection of PrEP, which from mainstream societal and healthcare perspectives is an irrational action, especially considering the three patients in our group who became HIV-positive within months of being offered PrEP.
This point is important. It emphasizes that nurses and other healthcare providers and workers need to recognize that, while HIV acquisition does have antecedents (our so-called objective risk factors and the clinical risk factors our nurses used), the understanding of risk in everyday life is subjective and culturally bound. As such, nurses should not attempt to correct or impose dominant ideologies about risk on patients, but rather, should provide care that aligns with patients’ views about risk and concurrently help them minimize the possibilities of HIV acquisition.
As a final point, while our indications for a PrEP referral did not focus on sexual orientation or practices, we still primarily offered PrEP to men who have sex with men, maintaining the perception of and focus on this one group in public health HIV prevention work. Indeed, over half of our referrals involving clinical judgement involved men who have sex with men, albeit likely because our referral criteria were based on infections that primarily affect this group: rectal bacterial STIs, infectious syphilis, and HIV. Although this emphasis on men who have sex with men is important, as HIV continues to unequally affect this group, our approach nonetheless contributes to a long history of medical interventions aimed at regulating the gay male body. This fits with Lupton’s assertions about risk [40], in that, just like our patients, our allegedly epidemiologic and empirical risk assessments served to identify persons who fall outside the socially accepted standards of monogamous coupled heterosexual relationships. We did not necessarily address the social inequities that render these men more affected by HIV; we simply identified them and offered a prevention tool.
Despite this criticism, we think active-offer PrEP should continue, but with efforts to better understand the sociological implications of this approach. The next phase of our research will ths involve qualitative interviews with patients who declined or accepted PrEP referrals to better understand their views on PrEP and risk. The knowledge gained from these interviews could help modify our referral process, including determining the ideal time and settings to offer PrEP (e.g., over the phone versus in person) and to facilitate broader access to PrEP among populations with elevated HIV prevalence, including persons of African, Black, or Caribbean ethnicity, persons who are Indigenous, and persons who are transgender.