The perspectives of street-involved youth who use drugs regarding the acceptability and feasibility of HIV Pre-Exposure Prophylaxis: A qualitative study

Abstract

Street-involved youth who use drugs (YWUD) face an elevated risk of HIV acquisition and represent a key population for HIV prevention initiatives, including pre-exposure prophylaxis (PrEP). However, little is known regarding the acceptability and feasibility of PrEP uptake and adherence among this multiply-marginalized population. Semi-structured qualitative interviews were conducted with 24 street-involved YWUD (ages 17–24) to examine their perspectives toward PrEP; youth were recruited through a longitudinal prospective cohort study in Vancouver, Canada. Youth reported high levels of ambivalence toward PrEP despite engagement in HIV-related risk behaviors. This ambivalence was driven by misperceptions regarding HIV transmission, including stigmatizing associations between HIV transmission and personal hygiene. Such misperceptions led participants to enact strategies that were ineffective in preventing HIV transmission. Participants contested their inclusion as a “key population” for PrEP, which limited their enthusiasm for PrEP uptake and adherence. Participants also highlighted that wider social-structural inequities (e.g., housing vulnerability, poverty) that produced HIV-related risks were likely to undermine sustained PrEP use. Findings demonstrate the need for tailored implementation strategies to increase PrEP acceptability, including targeted education and anti-stigma interventions to increase awareness about HIV transmission. Interventions should also target structural inequities in order to fully address HIV risk and PrEP ambivalence.

Introduction

HIV prevention has changed dramatically with the introduction of oral tenofovir-emtricitabine (TDF-FTC)-based HIV Pre-Exposure Prophylaxis (PrEP) in 2013, (Liu et al, 2014; Grant et al., 2010; Liu et al., 2016) and the recent United States (US) Food and Drug Administration (FDA) approval of long-acting injectable (LAI) PrEP. PrEP is >90% effective at preventing HIV infection among highly adherent patients (Grant et al., 2010; Granich, Williams & Montaner, 2013; Grant et al., 2014; McCormack et al., 2016). The World Health Organization consolidated guidelines for HIV prevention recommend that PrEP should be offered to vulnerable groups at high-risk of HIV transmission, including youth from key populations (e.g., people who inject drugs, sex workers, men and transgender persons who have sex with men) (World Health Organization, 2016).

Street-involved youth who use drugs (YWUD; defined for our purposes as individuals age 14 to 26 who are temporarily or absolutely without housing or accessing street-based youth services and use illicit drugs other than cannabis) face an elevated risk of HIV transmission, and experience HIV rates higher than the general population (Wilson et al, 2010; Marshall et al., 2009). These multiply-marginalized youth are at increased risk of both injection and sexual transmission, including due to high-risk injecting practices, multiple sex partners, sex work involvement, and low rates of condom use (Worthington et al., 2008; Lloyd-Smith et al., 2008; Public Health Agency of Canada, 2006). These intersecting vulnerabilities to HIV transmission are driven by the multi-level risk environments of street-involved YWUD (Rhodes et al., 2005; Collins et al., 2019). The risk environment framework holds that HIV risks are due to the interplay between types of environments (social, physical, economic, and political) that operate across micro (immediate or institutional) and macro (societal) levels (Rhodes et al., 2005). This framework higlights how interactions between social (e.g., gendered power relations), structural (e.g., poverty), and physical (e.g., characteristics of drug use settings) environments shape HIV risk (Rhodes et al., 2005; Strathdee et al., 2010).

Previous research demonstrates how social and structural inequities, such as high rates of homelessness and incarceration, increase youths’ vulnerability to HIV transmission (Marshall et al., 2009; Aidala et al., 2005; Omura et al. 2014). Such inequities converge to increase drug-using, street-involved youths’ exposure to settings and situations, such as public injecting settings, that impede their ability to enact HIV risk reduction strategies (Marshall, 2008; Marshall et al., 2010). These challenges that street-involved YWUD face to negotiating HIV risks highlight the need for additional approaches, including those with high levels of confidentiality. Although PrEP is well-positioned to reduce HIV transmission in such contexts, little is known about street-involved YWUDs’ interest in, or willingness to use, PrEP. Understanding social, structural, and environmental influences on the acceptability and feasibility of PrEP in ‘real world’ contexts among this key population will be critical to its successful implementation.

PrEP is available in British Columbia (BC), Canada at no cost to qualifying individuals deemed clinically at-risk of HIV infection (Seucharan, 2017). Local guidelines recommend PrEP for men and transgender persons who have sex with other men, people who inject drugs, and serodiscordant couples reporting HIV-related risk behaviours (e.g., syringe-sharing, condomless sex) (British Columbia Centre for Excellence in HIV/AIDS, 2017). Although street-involved YWUD are not explicitly named in these guidelines (British Columbia Centre for Excellence in HIV/AIDS, 2017), many occupy one or more of the eligibility profiles (e.g., injection drug use, serodiscordant couples). Local research documents high levels of HIV-related risk behaviours among this population (Bozinoff et al, 2018; Cheng et al., 2016; Bozinoff et al., 2017; Marshall et al., 2009), demonstrating the need for multiple forms of HIV prevention, including PrEP. This qualitative study examined the perspectives of street-involved YWUD in Vancouver, BC regarding the acceptability and feasibility of PrEP uptake and sustained use, including a focus on the role of their broader risk environment.

Methods

This qualitative study was undertaken in connection with the At-Risk Youth Study (ARYS), a longitudinal cohort study of street-involved YWUD (defined as individuals age 14 to 26 who are temporarily or absolutely without housing or accessing street-based youth services and report the use of illicit drugs other than cannabis in the past month). As described elsewhere (Wood et al., 2005), ARYS cohort participants are recruited through community outreach and referral from community agencies and complete bi-annual structured questionnaires and clinical assessments, including HIV testing. ARYS and this qualitative sub-study were approved by the UBC/Providence Health Care Research Ethics Board. We drew on principles of the extended case method insofar as we were explicitly concerned with macro-level dynamics underlying PrEP acceptability and feasibility among YPWUD (Burawoy, 2009) – a focus consistent with our application of the risk environment framework during analysis (Rhodes et al., 2005; Collins et al., 2019).

From May to July 2017, cohort participants were recruited for participation in these PrEP-focused qualitative interviews with assistance from the ARYS study coordinator and interviewers. All ARYS participants who reported current illicit drug use during their most recent cohort-based survey interview were eligible to participate. During periods when a qualitative interview was available, cohort study staff briefly explained this study to eligible participants following the completion of their bi-annual cohort survey interview. They scheduled qualitative interviews with anyone expressing an interest in participating or referred them directly to a qualitative interviewer (if onsite). We used a convenience sampling strategy given that most ARYS participants were eligible, while also using recruitment quotas intended to prioritize recruitment of Indigenous persons, women, and gender diverse persons to enhance the representativeness of our sample. Participant recruitment continued until data saturation had been achieved. In total, 24 street-involved YPWUD participated in this study (see demographics in Table 1).

TABLE 1:

PARTICIPANT CHARACTERISTICS

	n (%)
Participant characteristic	N=24
Age
Mean	21 years
Interquartile range	19.5 – 23 years
Gender
Male	16 (66%)
Female	4 (16%)
Transgender or gender diverse persons	4 (16%)
Race
White	13 (54%)
Indigenous	9 (37.5%)
Other	2 (8%)
Current housing
House	5 (20%)
Single room occupancy hotel	5 (20%)
Apartment	2 (8%)
Unsheltered	10 (41%)
Other	2 (5%)
Drug use (Thirty days prior to interview) a
Crystal methamphetamine (injected or smoked)	14 (58.3%)
Cocaine (Injected or snorted)	10 (41.7%)
Heroin (injected or smoked)	10 (41.7%)
Fentanyl (injected or smoked)	8 (33.3%)
Other opioids (injected, smoked or taken orally)	7 (29.2%)
Crack cocaine (Smoked	6 (25%)

^aParticipants were able to select more than one response

The lead author conducted interviews at the ARYS cohort study office, with several interviews co-led by more senior team members (RM, TK, JB). Team members obtained written informed consent prior to the interviews and participants received a $30 honoraria following interview completion. An semi-structured interview guide was used to facilitate discussion. This interview guide included questions that elicited discussion regarding the wider context of participants’ lives (e.g., housing status, income generation, social relationships, etc.), perceived HIV risk, perspectives on PrEP acceptability and feasibility, and knowledge of HIV and HIV transmission. Interviews were audio recorded (range: 25–70 minutes) and transcribed.

Data were imported into NVivo, a qualitative data management and coding software program, and analyzed using the constant comparative method to explore drug-using street involved youths’ attitudes towards PrEP. Two team members (first and senior author) first reviewed a selection of transcripts using a line-by-line approach to create an initial code dictionary. During these preliminary stages of the data analysis, the authors documented that ambivalence toward PrEP was identified as common among participants, and that it was influenced by the risk environments of street-involved YWUD. We subsequently drew upon the Risk Environment Framework to revise the coding framework to delineate social, structural, and environmental influences on ambivalence and PrEP acceptability. Inclusion of codes related to the Risk Environment Framework was operationalized by adding categories (e.g., constructions of ‘high risk populations’, social-structural inequities) that influenced PrEP acceptability and feasibility among participants. The first author coded the remaining transcripts under the supervision of the senior author and with input from the remaining team members. The senior author reviewed the first author’s coding during meetings, and recoded a section of the transcripts to enhance the reliability of the analysis. As final coding occurred, the research team conducted regular meetings to discuss the analysis and refine the thematic categories. Once the coding framework and coding were finalized, the lead author re-coded sections of the data under the supervision of the senior author to finalize the analysis and enhance reliability. Participants were assigned pseudonyms using an online pseudonym generator for the purposes of reporting.

Results

Three predominant themes surfaced from our analysis. Youth reported high levels of ambivalence toward PrEP despite engagement in HIV-related risk behaviors. This ambivalence was driven by misperceptions regarding HIV transmission, including stigmatizing associations between HIV transmission and personal hygiene. Such misperceptions led participants to enact strategies that were ineffective in preventing HIV transmission. Participants contested their inclusion as a “key population” for PrEP, which limited their enthusiasm for PrEP uptake and adherence. Participants also highlighted that wider social-structural inequities that produced HIV-related risks were likely to undermine sustained PrEP use.

PrEP Ambivalence & Misperceptions about HIV

Many participants reported an ambivalence toward PrEP because they did not perceive themselves as ‘at risk’ of HIV acquisition despite engaging in HIV risk behaviours (e.g., sharing drug use paraphernalia and condomless sex). While many participants knew that their behaviours were associated with HIV acquisition, they had misperceptions about how they might determine their own HIV-related risks in a specific encounter, leading them to consider PrEP unnecessary. For example, many participants did not feel at-risk of HIV transmission because they believed they could discern whether someone was living with HIV based on a variety of ‘proxies.’ These proxies included physical appearance (e.g., those they deemed ‘dirty’ or ‘sickly’), which was based on structural inequities such as poverty and homelessness. ‘Jayden’, a 23-year-old Indigenous man, noted:

Like if I have AIDS […] there’s no hiding it, right? Like, I’m going to look all decrepit […] there’s no hiding that you have AIDS. If you have AIDS, you’re probably not going to get laid either cause you’re going to look like a skeletal mass that just isn’t that attractive.

These misperceptions were grounded in stigmatizing conceptions about HIV and HIV risk common in youths’ social-environmental context. Many participants also associated HIV risk with other misunderstandings stemming from misinformation about how HIV is transmitted, including based on the physical hygiene of others or exposure to places that were dirty.

These misperceptions also informed youths’ HIV-mitigation strategies, which were often positioned as direct alternatives to PrEP. Many participants reported choosing drug use and sexual partners who were “clean” and avoiding people they perceived as “dirty”. ‘Sarah’, a 21-year-old Indigenous woman, explained that she could tell whether potential sexual partners were living with HIV, despite not knowing their HIV serostatus:

You can pretty much tell when you meet somebody […] if they’re clean enough […] like if they have more respect for themselves […] and how someone holds themselves.

Other participants emphasized that they could avoid HIV transmission by “staying clean” and avoiding areas that they perceived as dirty. ‘Sam’, an 18-year-old gender diverse person, explained:

There’s a lot of people down there [drug scene area] who have poor hygiene…I consider poor hygiene a risk factor. That’s why I try to keep myself clean and shaved and everything, I shower every single day.

These perceived mitigation strategies limited participants’ desire to engage with many of the HIV-mitigation strategies enforced by public heath professions, including PrEP.

Contesting inclusion among high-risk populations

Participants also expressed ambivalence toward PrEP because they did not identify as a ‘high-risk’ population. Many actively contested their inclusion among key populations for PrEP implementation despite engaging in behaviors conventionally used to assess HIV risk (e.g., injection drug use, condomless sex). When asked which types of individuals might be at risk for HIV, youth commonly identified individuals who inject drugs, sex workers, and men and transgender and gender diverse persons who have sex with men. However, while doing so, they simultaneously distanced themselves from these populations by emphasizing how their HIV-related risks were minimal in comparison to other members of these populations. For example, they expressed values (e.g., misogyny, classism, anti-drug stigma) that reinforced the social-structural oppression of these groups and showed how they did not fit those categorizations. For example, Sam differentiated their injection drug use patterns from that of others that they deemed to be at greater risk of HIV transmission: “I consider myself high-risk, but not like extreme high-risk […] Like I use drugs, but I’m not like a chronic, everyday addict that’s living on Hastings Street [center of the Downtown Eastside, a neighbourhood with an entrenched drug scene].” Participants often emphasized that they were more responsible than individuals whom they characterized as ‘dirty’, ‘risky’, or ‘irresponsible’ despite having shared lived experiences and facing similar structural oppression, often in ways that reinforced stigma against specific populations (e.g., people who inject drugs, sex workers).

Participants’ efforts to resist or contest their inclusion among key populations also influenced their interest in PrEP. Participants frequently questioned, and sometimes challenged, why health care professionals had offered to prescribe them PrEP on the basis of, for example, drug use or sex work involvement. These participants articulated that they did not wish to be singled out based on their drug use or other identities and activities and, in doing so, distanced themselves from the very groups that they themselves stigmatized. As such, a lack of interest in PrEP, or actively refusing PrEP, was a way for youth to maintain distance from stigmatized and “key populations” whose behaviors would place them at risk for HIV. The following exchange with ‘David’, a 20-year-old white man, illustrates this dynamic:

Participant: I think it’s pretty useful, if you have a high risk.

Interviewer: How would you feel if you went to see doctor and they offered you PrEP?

Participant: I’d ask why…I’d probably wonder why they’re pushing a pill onto me. I’d wonder if the next guy before me or after would get the same offer.

Social-structural inequities and PrEP feasibility

Participants emphasized that their lives were shaped by social-structural inequities (e.g., poverty, homelessness and housing instability) that not only produced HIV-related risks but also undermined PrEP feasibility. Participants frequently characterized their lives as “chaotic” and emphasized how HIV-related risks were often situational and produced by wider social-structural inequities – that is, poverty, homelessness, and criminalization, among other vulnerabilities. For example, youth frequently reported that homelessness and housing instability made it difficult to establish routines, which often led to their frequent engagement in unplanned drug use or sex, which limiated access to harm reduction supplies. These social-structural inequities also challenged participants’ ability to maintain access to opioids to avoid drug withdrawal, resulting in situations where they injected under duress and in settings that amplified HIV-related risks. ‘Tyler’, a 23-year-old Indigenous man, explained: “[I have] used someone’s cooker…It just becomes too much and you’re in so much pain, like you’re dopesick [i.e., experiencing opioid withdrawal]… when you know you can walk four or five blocks to get clean ones, but yeah.”

Participants explained that the same social-structural inequities that caused them to lead ‘chaotic’ lives would prevent them from accessing or adhering to PrEP. ‘Bryan’, a 21-year-old Asian-Canadian man, explained how social-structural inequities would impede PrEP adherence:

Because of what they’re worrying about in their day-to-day lives. Will I be homeless? What am I going to eat tomorrow? When am I going to get my drugs? What am I even going to do today? […] When people are thinking like that, it’s all their basic survival instincts kicked in. They’re not really thinking, ‘Hey, it’s 9:00. I need to take my pill.’

Furthermore, other participants explained that social-structural inequities lead to a sense of hopelessness that results in ambivalence toward HIV risk, and that would pose further challenges to sustained PrEP use, particularly adherence. ‘Gabriela, a 19-year-old Indigenous woman, explained how the depression and despair produced by social-structural inequalities increases drug use and would undermine PrEP adherence:

I think a lot of people are really careless […] They don’t even eat, so I don’t think they would even really take a pill. They’re like so like in this dark place, […] They’re so careless with their life and they’re so reckless and some of them are so depressed, I think they wouldn’t even bother taking [PrEP]. All that’s on their mind is getting high and using, you know?”

This demonstrates the challenges, particularly among youth, to engaging in the uptake of, and adherence to, a medication such as a PrEP in response to a disease for which they do not consider themselves to be at risk.

Discussion

This study is one of the first to examine attitutdes toward PrEP among drug-using and street-involved youth. Despite youths’ engagement in HIV-related risks and acknowledgement of how the risk environment constrained their behaviors, the study found high-levels of ambivalence toward PrEP. Misperceptions and misinformation regarding HIV transmission within peer networks contributed to this ambivalence, and led individuals to enact strategies that are ineffective in preventing HIV transmission. Street-involved YWUD also contested their inclusion among key populations for PrEP, which negatively impacted potential uptake and sustained use. Finally, street-involved YWUD also noted that wider social-structural inequities (e.g., homelessness, criminal justice involvement etc.) that produced HIV-related risks were likely to limited sustained PrEP use. These findings demonstrate the challenges with taking a purely biomedical approach to HIV prevention. Specifically, they highlight how the continued development of new modalities (e.g., long-acting injectable PrEP) will remain insufficient among populations such as drug-using and street-involved youth who do not see themselves as in need of biomedical HIV prevention measures.

Research regarding the acceptability and feasibility of PrEP among drug-using populations has been mixed. Several epidemiological studies have indicated a high degree of PrEP acceptability among adults who inject drugs despite low levels of awareness of this intervention (Stein, Thurmond & Bailey, 2014; Sherman et al., 2018), while other studies have documented a low willingness to use PrEP even when considered acceptable (Bazzi et al., 2018; Escudero et al., 2015; Biello et al., 2018). The current study adds to this literature in a number of key ways. First, it focuses on youth whose sense of risk, and perceptions of vulnerability, may differ from those of adults who use drugs. Second, it documents both ambivalence and resistance toward PrEP among a drug-using sub-population that highly vulnerable to HIV transmission and, third, it locates these experiences in relation to the ‘real world’ contexts of the lives of street-involved YWUD and the role of social-structural risk environments, including sexism and racism specific to Indigenous persons in Canada. This study documents how perceptions related to HIV risk among individuals categorized as “key populations,” can undermine PrEP acceptability (particularly uptake and sustained use) among street-involved YWUD. This points to the continued need to address stigma and underlying social, structural, and environmental conditions that drive this stigma (e.g., criminalization, misogyny, etc.). That health care providers discriminate against people who inject drugs, particularly those who are youths or Indigenous (Goodman et al., 2017; Lazarus et al., 2012; Kurtz et al., 2005; McNeil et al., 2014; van Boekel et al., 2013), might explain why study participants contested their inclusion among these populations; it also demonstrates the wider imperative to improve cultural safety in care to enhance HIV prevention. It also highlights the need for additional research to further understand perceptions of HIV-related risk in order to identify types of interventions that may increase interest in, and willingness to use, PrEP.

Consistent with recent research among adults who inject drugs (Bazzi et al., 2018; Biello et al., 2018), this study found that street-involved YWUD did not consider themselves to be at-risk of HIV transmission despite reporting engagement in HIV risk behaviours. This study expands existing research by examining factors shaping this dynamic, and suggests that HIV risk perceptions were, in part, fueled by misperceptions and misinformation regarding HIV transmission circulating within peer networks. Even though study participants identified HIV risk behaviours, they also had low overall knowledge regarding HIV transmission. Notably, many participants believed that HIV-status could be discerned based on physical appearance alone, which led them to enact strategies unlikely to prevention HIV transmission and view PrEP as unnecessary. These findings demonstrate an urgent need for accurate and contextually-relevant HIV education among street-involved YWUD to address such misperceptions, particularly now that we have a biomedical prevention measure (i.e., PrEP) which can be taken with high levels of confidentiality. Indeed, research among men who have sex with men (MSM) has documented considerably greater awareness of HIV risk and transmission, and found associations between this awareness and increased willingness to initiate PrEP (Mosley et al., 2018). Given their success among populations with low trust in health care professionals and other institutions (Garfein et al., 2007; Mihailovic et al., 2015), peer-based education approaches are a particularly promising strategy for disrupting misinformation circulating within peer networks to increase PrEP acceptability.

Finally, findings reveal the importance of addressing the underlying social-structural inequities that drive HIV-related risks among street-involved YWUD and have the potential to undermine PrEP uptake and sustained use. Importantly, as is consistent with several previous studies undertaken among adults who inject drugs (Escudero et al., 2015), this study found that street-involved YWUD expressed skepticism in regard to PrEP implementation due to the likelihood that social-structural forces that shape their daily lives would undermine adherence. Given the considerable body of literature delineating structural influences on HIV prevention and treatment adherence, including homelessness and incarceration (Dolan et al., 2015; McNeil et al., 2016), these findings are perhaps unsurprising. However, they demonstrate the need to ensure that HIV prevention programs are relevant to the lived experiences of street-involved YWUD and inequities that shape their lives. It calls for research to determine the acceptability of long-acting PrEP modalities, as those may circumvent some barriers to oral PrEP. As such, intervening to address dynamics within the risk environment that drive vulnerability among street-involved YWUD, including homelessness, poverty, and drug criminalization, in combination approaches to HIV prevention remains critical to ensuring such relevance.

This study has several limitations. First, the perspectives of study participants might not be representative of all street-involved YWUD, particularly those in other settings. Second, although the recruitment strategy sought to ensure a diverse sample, it is possible that the views of some groups of street-involved youth were under-represented. Finally, this study was undertaken in a setting that currently has low rates of HIV transmission among youth, and research undertaken in settings with higher transmission rates might yield different results.

In conclusion, study findings highlight key considerations that might limit PrEP acceptability and feasibility among street-involved YWUD. Efforts to address these implementation challenges should include targeted education and anti-stigma programs to increase awareness regarding HIV transmission among street-involved YWUD and social factors limiting PrEP acceptability. However, findings demonstrate the ongoing need for interventions (e.g., housing) that are responsive to social-structural drivers of HIV risks among drug-using street involved youth, as these are likely to be of greater relevance to this population.