INTRODUCTION

Since 2015, the World Health Organization (WHO) has recommended oral Pre-Exposure Prophylaxis (PrEP) for individuals at substantial risk of HIV infection (World Health Organisation [WHO], 2015). Demonstration projects and open-label studies showed that PrEP provision is feasible as part of a combination prevention approach among key populations, such as men who have sex with men (MSM) (Grinsztejn et al., 2018; Hoornenborg et al., 2019; McCormack et al., 2015; Molina et al., 2015; Vuylsteke et al., 2019; Zablotska et al., 2019). Since the WHO recommendation, the number of countries rolling out PrEP has been increasing, most rapidly in Western Europe (AIDS Vaccine Advocacy Coalition (AVAC), 2020). But, if and how it will be used partially depend on its social acceptability as HIV prevention strategy (Haire, 2015).

The clinical efficacy of this novel biomedical tool was demonstrated in various clinical trials (Fonner et al., 2016). Since the start, there has been much focus on the potential impact of PrEP on sexual behaviour, that PrEP may lead to increased risk-taking or condomless sex (Holt & Murphy, 2017; Rojas Castro et al., 2019). Other research focusing on the ‘behavioural aspects’ of PrEP mostly focused on factors that may influence the effectiveness of PrEP, such as barriers to uptake and adherence. Survey studies have attempted to quantify the level of awareness and acceptability of PrEP among ‘at-risk populations’ such as MSM (Peng et al., 2018). Qualitative studies reveal barriers such as ‘PrEP stigma’ due to its associations with promiscuity, HIV and homosexuality (Brooks et al., 2019a, 2019b; Calabrese & Underhill, 2015; Collins et al., 2017; Grace et al., 2018; Haire, 2015; Newman et al., 2018; Pawson & Grov, 2018; Puppo et al., 2020). Disclosing PrEP use to others can lead to social support and is thus deemed an important facilitator for PrEP use (Brooks et al., 2019a; Phillips et al., 2019).

In this study, we focus on the social meaning of PrEP. According to symbolic interactionism, the meaning of something is not intrinsic to the object, nor is it defined by our attitude towards it. Instead, meanings are social products that are formed in and through social interaction (Blumer, 1969). Through language and behaviour, we derive how others may or will act towards the object or person, which helps to adapt our own actions accordingly. The social meanings attached to PrEP will co-determine how it is used (Auerbach & Hoppe, 2015), and how PrEP users are perceived within society. For example, if PrEP is perceived to be for high-risk individuals, it provides a discourse for labelling PrEP users as sexual deviants (Pawson & Grov, 2018) and is likely to prevent people from using it (Holt, 2015). Moreover, studying the social meaning of PrEP can help us understand the impact PrEP may have on individuals, sexual cultures or even society at large. How PrEP users are perceived within a given culture may determine what potential sex partners can expect from sexual encounters. Claiming to be a PrEP user can shape interactions with sex partners, friends and family (Auerbach & Hoppe, 2015). The sheer existence of PrEP may lead to prevention optimism, that is individuals believing the risk of getting infected with HIV is lower in their community (Holt & Murphy, 2017).

We draw upon symbolic interactionism to study the social meaning of PrEP, more specifically the work of H. Blumer (Blumer, 1969). A first premise in symbolic interactionism is that people act towards things on the basis of the meaning that these things have to them. For example, a pill to reduce the risk for acquiring HIV will more likely be used by those perceiving themselves at risk for HIV infection. A second premise is that such meanings are derived through social interaction. It is through others that we learn that PrEP is for ‘promiscuous persons’ or that PrEP is ‘a responsible choice’. PrEP is a relatively new HIV prevention tool, and its presence in everyday life has only increased during the last few years, making it ideal to study how individuals have come to derive its social meaning through social interaction. Thirdly, these social meanings are handled in and modified through an interpretative process. PrEP users are not merely passive recipients of PrEP stigma, but such meanings are interpreted, handled within a social situation, and can be acted upon by an individual. Symbolic interactionism is particularly helpful to understand how the meaning of something, in this case PrEP, is being defined and re-defined in everyday social life. In this empirical approach, the focus is on the perceiving individual who adapts his/her behaviour based on his/her perceptions. Hence, it is an ideal lens to study how individuals learn about PrEP through others and how they adapt their behaviour accordingly.

Social meanings are never fixed, but constantly negotiated through a ceaseless stream of social interaction (Plummer, 1982). To better understand the social meaning of PrEP use, we must explore how it is derived, interpreted, negotiated and potentially changed through social interaction. Therefore, in this study, we also focus on disclosure of PrEP use. Focussing on social disclosure enables a micro-level view on how the social aspects of PrEP use are handled in everyday life. Various studies have reported ‘PrEP stigma’, meaning that PrEP is socially discredited and confers negative judgement or value onto the individual (Golub, 2018; Siegler et al., 2020). Distinctions are made between experienced, perceived, anticipated or internalised stigma (Rosengren et al., 2021). But how individuals deal with such potential stigma in everyday life is not yet fully understood. These studies or reviews frequently refer to the concept ‘stigma’ of symbolic interactionist E. Goffman (Goffman, 1963). But, the most central idea of Goffman, that individuals present themselves to others in order to shape others' perceptions of oneself (Goffman, 1959), is frequently missing in qualitative PrEP research. As presented in the work of G.H. Mead (Mead, 1934), social interaction not only involves an individual perceiving oneself through the other, but also the exertion of behaviour in such a way that the others' attitudes towards oneself are shaped. PrEP is a pill that can be taken privately most of the time, which means that disclosure of PrEP use can be selective (Phillips et al., 2019). Hence, exploring why, when and how PrEP use may or may not be disclosed provides an ideal opportunity to study how the social meaning of PrEP is handled to shape others' perceptions of oneself.

The main objective of this study was to explore how early adopters of PrEP in Belgium and the Netherlands experienced and managed PrEP disclosure to others. Such knowledge will be important to fully understand how social interaction and social life can influence its uptake, its use, and how PrEP is becoming part of the social and sexual culture of MSM communities, and society at large.

METHODS

Qualitative data

Qualitative data were collected and analysed iteratively, following a grounded theory approach (Strauss & Corbin, 1998). In-depth interviews provide an ideal starting point to investigate how social meanings are derived, handled and acted upon from the standpoint of individuals (Blumer, 1969). Be-PrEP-ared participants were selected as part of the main Be-PrEP-ared study, based on information-rich events (e.g. switching regimen or stopping with PrEP) or availability, that is before or after a follow-up visit (De Baetselier et al., 2017). We conducted in-depth interviews with AMPrEP participants who either had disclosed PrEP use to almost nobody, and participants who had disclosed to a wide range of persons, based on their answers in the AMPrEP questionnaire. During the data collection phase, the topic guide was adapted slightly, without losing consistency, to explore emerging themes in-depth, based on preliminary analyses.

Two social scientists (TR and CN) conducted the Be-PrEP-ared interviews. One social scientist TR conducted the AMPrEP interviews for this study. The interviews took place in a confidential and safe place within the clinic of each study site. A comparable topic guide was used in both study sites, with one identical section on social disclosure of PrEP use. In line with symbolic interactionist theory (Blumer, 1969), we discussed with participants how they perceived PrEP use and, how it was perceived by others, which reactions they received after disclosing their PrEP use and how such disclosure differed according to social situations. All interviews were audio-recorded and transcribed verbatim.

The data were analysed in three consecutive phases using NVIVO 12. Analyses were discussed within the research team in between each phase. A coding scheme was developed inductively while coding 15 Be-PrEP-ared interviews, with the focus on finding patterns in experiencing and managing disclosure of PrEP use. The scheme was adapted after analysing 10 additional AMPrEP interviews, in which disclosure experiences, strategies used by participants and differences according to social situations were categorised. The third phase involved re-analysing all interviews with the remaining eight Be-PrEP-ared interviews, with the purpose of developing an explanatory framework (see Figure 1). The explanatory framework is guided by symbolic interactionist principles: it provides an overview of how social meanings are derived, managed and acted upon through social interaction by focusing on social disclosure in different social situations.

RESULTS

We interviewed 32 participants between January 2016 and April 2018. Interviewees were comparable to the overall study sample, but were more likely to be higher educated (Table 1). Be-PrEP-ared interviewees were less likely to have a steady partner, while AMPrEP interviewees were more likely to be older and to identify as exclusively homosexual.

Disclosure to sex partners

Many interviewees indicated that they actively disclosed their PrEP use to sex partners or potential sex partners. In this social context, being a PrEP user was generally associated with not using a condom for sex. The following interviewee explained how he learned that PrEP was associated with condomless sex:

Last week I told someone that I was taking part in the study <I take PrEP> and he seemed to know what I was talking about. He said <Ah okay, then we don't need to use a condom>. (interviewee 5, Be-PrEP-ared)

Interviewees disclosed PrEP use to facilitate condomless sex, to attract like-minded people, or to increase the chances for having sex. For example, in dating apps or when seeking partners online, the PrEP use status was pro-actively mentioned or stated in the profile:

I can put it [in my online profile] and then I really attract people who are looking for the same thing. And to raise my chances. (interviewee 20, Be-PrEP-ared)

Among Be-PrEP-ared participants, 100 (56.2%) had disclosed PrEP use to at least one casual sex partner in the first month of PrEP use, and 156 (87.6%) did so within the first year (Figure 2).

DISCUSSION

We explored how participants from two PrEP demonstration projects in Antwerp, Belgium (Be-PrEP-ared) and Amsterdam, the Netherlands (AMPrEP) experienced and managed disclosure of their PrEP use. In line with the symbolic interactionist approach, we not only focused on how participants learned how others view PrEP users, but also how they actively manage their PrEP users status and negotiate the social meaning of PrEP through social interaction. The majority of Be-PrEP-ared participants had not received negative reactions towards their PrEP use over a period of at least 18 months. Interviewees adopted different strategies to avoid or to cope with such negative reactions, for instance by being selective about whom they would disclose PrEP to or correcting misconceptions about PrEP use. PrEP use disclosure was dependent on the social relation and context (e.g. a sex partner, friend or family member). Among MSM and potential sex partners, PrEP use was generally associated with condomless sex. PrEP use was generally not disclosed to family members or colleagues, as sexuality is usually not discussed within these social contexts. Among friends, PrEP use was endorsed because of its potential health benefit, but was also criticised as being careless and promiscuous.

An important finding is that within the first year of PrEP use almost all Be-PrEP-ared participants had told friends or sexual partners about their PrEP use. Only a minority (21.2%) indicated to have experienced more than one negative reaction with regard to their PrEP use after 18 months. This is in contrast to other studies, including two reviews, underscoring that PrEP use is stigmatised (Collins et al., 2017; Dubov et al., 2018; Golub, 2018; Grace et al., 2018; Haire, 2015; Newman et al., 2018; Sun et al., 2019; Maria Van Der Elst et al., 2013), but in line with one study from the USA showing that PrEP stigma may be low (Siegler et al., 2020).

Participants in our study experienced few difficulties with disclosing their PrEP use. The symbolic interactionist approach used in this study can provide two explanations for this finding. The first lies in the selective nature in which PrEP users may or may not choose to disclose their PrEP use in everyday social life, as found elsewhere (Brooks et al., 2019a; Newman et al., 2018; Puppo et al., 2020). This implies that the impact on PrEP use may be limited, as supported by our qualitative data. Situations in which PrEP use may be publicly disclosed, such attending the clinic, were generally not seen as problematic among the interviewees in our study. Interviewees reported that pill intake can be hidden if needed. However, we also found that some PrEP users might experience difficulties, for example taking PrEP in presence of a steady partner who did not approve of the PrEP use. Some PrEP users may be more likely to experience difficulties in hiding their pills, such as young MSM living at home, those living with a female partner, or those living a social environment that is less positive towards homosexuality (Brooks et al., 2019a; Haire, 2015; Mustanski et al., 2018; Siegler et al., 2020; Witzel et al., 2019). Future research could explore whether long-acting PrEP modalities, such as injectables, may overcome such difficulties.

The second possible explanation lies in the transformative potential of social interaction, in combination with activism within MSM communities. Social meanings are derived through social interaction with others, but are never fully fixed (Blumer, 1969). Social meanings thus can also be transformed through social interaction. Interviewees' narratives show that the social meaning of PrEP had changed over the past few years, due to increased sensibilisation and more widespread use and knowledge about PrEP, as reported elsewhere (Thomann et al., 2018). Within MSM communities, there has been advocacy early on to counteract negative perceptions, such as activists wearing the label ‘truvada whore’ with pride (Auerbach & Hoppe, 2015; Race, 2017). But also PrEP users themselves, in particular early adopters, may have been instrumental in normalising PrEP within MSM communities. This is evidenced by interviewees who actively disclosed PrEP use to others to inform them about its existence, or counter-acted negative reactions, as found in other qualitative studies (Brooks et al., 2019a; Card et al., 2019; Sun et al., 2019). A similar recent study in the USA also documented that widespread use and disclosure of PrEP had normalised it into an everyday practice, while early adopters actively promoted PrEP use to peers and combated stigma (Gómez et al., 2020). Hence, stimulating peer communication about PrEP use and sharing positive narratives around PrEP may be important strategies to further increase PrEP uptake. This could be achieved by underscoring, for instance, that PrEP can be a healthy, responsible choice, rather than something for individuals ‘at risk’ (Golub, 2018; Rojas Castro et al., 2019), or that PrEP can enable users to have more enjoyable sexual encounters (Mabire et al., 2019; Race, 2017; Reyniers et al., 2021; Zimmermann et al., 2020).

Our findings suggest that the PrEP narrative has spread quickly in the MSM communities in this study. The work of K. Plummer can provide additional insights as to why this may have been the case, here conveniently summarised as ‘Stories can be told when they can be heard’ (Plummer, 2002). Before PrEP was available, it was frequently argued that MSM communities in high-income countries would experience ‘prevention fatigue’, explaining reduced condom use (Spire et al., 2008). Such a community may have been more supportive of PrEP use, and at the same time, through a shared sense of community, PrEP disclosure and advocacy may have further strengthened community building. The introduction of PrEP may have also led to opportunities for opening up the conversation about such prevention fatigue and to be responsive to particular needs, such as combining sex and drugs (Nicholls & Rosengarten, 2020; Race, 2017). Furthermore, it should be noted that Belgium and the Netherlands (the focus of this study) are countries with relatively good LGBTI-friendly policies (ILGA-Europe, 2020), where MSM experience less gay-related verbal discrimination or physical violence (Ross et al., 2013), and report less internalised homonegativity (Tran et al., 2018), when compared with other European countries. In countries with a less LGBTI-friendly climate, MSM might experience more negative reactions when disclosing their PrEP use, and peer communication about PrEP may prove to be more difficult.

In a sexual context, PrEP use was generally associated with condomless sex in our sample, corroborating findings from other studies (Card et al., 2019; Grace et al., 2018; Puppo et al., 2020). Despite efforts and recommendations of providing PrEP as an additional tool in a combination prevention strategy (World Health Organisation [WHO], 2015), many MSM may be viewing PrEP as a replacement for condoms. This can undermine PrEP users' abilities to negotiate the use of condoms when preferring one (Puppo et al., 2020). It shows that the relation between condom and PrEP use remains ambiguous, and that we lack an unanimous perspective and a clear message or narrative on how they could be related to each other (Holt et al., 2019).

We found that interviewees did not often disclose PrEP use to family members and colleagues, as also reported by other qualitative research (Witzel et al., 2019). The quantitative follow-up data showed that after 1 year 42.7% of Be-PrEP-ared participants had disclosed PrEP to at least one family member. Our qualitative findings revealed that in the family context sexuality was not an acceptable or relevant topic of conversation, therefore, disclosing PrEP use was not seen as beneficial. However, this is not equal to PrEP use being stigmatised in these situations. Social norms prescribe when it is acceptable to talk about sex (Cislaghi & Shakya, 2018), and for most of our participants, this did not include the family context. We suggest that further research should disentangle not disclosing due to social norms prescribing when it is acceptable to talk about sex from not disclosing PrEP due to anticipated stigma. For example, when developing a PrEP stigma scale (Siegler et al., 2020), it can be questioned whether indicating that family members are not supportive of PrEP use should be seen as sign of stigma.

Interviewees experienced and anticipated negative reactions towards PrEP due to the association of PrEP with promiscuity, as found elsewhere (Grace et al., 2018; Puppo et al., 2020). A subgroup of MSM, and more particular MSM using PrEP, can have multiple casual sex partners independent of being in a steady relationship (Basten et al., 2018; Bochow et al., 1994; Hess et al., 2017; Hoornenborg et al., 2019; Kramer et al., 2015; Lim et al., 2012; McCormack et al., 2015; Molina et al., 2017; Reyniers et al., 2018). These negative reactions to having multiple sex partners show that the heterosexual monogamy norm remains dominant in society (Worth et al., 2002), and that PrEP is a visible marker for violating this norm. However, as PrEP is becoming part of MSM communities, its sheer existence and association with having multiple sex partners may also mean that non-monogamy has become or is becoming a norm within MSM communities (Philpot et al., 2018).

The symbolic interactionist approach showed how the social meaning of PrEP can vary between social contexts and how disclosure is managed accordingly. Due to its empirical focus on individual perceptions and behaviour of acting individuals, it is particularly helpful to understand how disclosure of using a potentially stigmatised health intervention is managed in everyday social life. The approach and the explanatory framework may be relevant to study other potentially stigmatised illnesses (e.g. mental health illness) and to find strategies to cope with social disclosure of such illnesses. For example, studies suggest stigma is an important concern for people with depression, and disentangle different types such as ‘personal’, ‘public’ or ‘self-stigma’ (Griffiths et al., 2008). A symbolic interactionist approach could help understand how, from an individual standpoint, such meanings are dealt with in everyday life. Moreover, the approach can be useful to study how the social meaning of a particular illness or health-promoting intervention may vary across social contexts. Understanding such variations can be crucial to understand why a particular intervention may (not) work in a given setting while its efficacy has been demonstrated elsewhere, or to help explain regional differences in public health programs or health-promotion interventions (Moore et al., 2015).

CONCLUSION

Among early PrEP adopters in Belgium and the Netherlands, disclosure of PrEP use was high, in particular to friends and sex partners. PrEP users anticipated and received negative reactions about their PrEP use, leading them to being selective about whom to disclose PrEP use to. Stigma and negative reactions seemed to have little impact on PrEP use. In a sexual context, PrEP use was associated with condomless sex, which supports the notion that PrEP is replacing condom use in a sub-group of MSM. Increasing PrEP use, sensibilisation, and advocacy by early adopters may have contributed to the normalisation of PrEP among MSM communities in these settings. To increase uptake among those with an unmet PrEP need, peer communication, community activism and framing PrEP as health promotion rather than a risk-reduction intervention may be crucial.

AUTHOR CONTRIBUTIONS

Thijs Reyniers: Conceptualization (lead); Formal analysis (lead); Methodology (lead); Writing-original draft (lead); Writing-review & editing (lead). Hanne M. L. Zimmermann: Conceptualization (supporting); Formal analysis (supporting); Methodology (supporting); Writing-review & editing (supporting). Udi Davidovich: Conceptualization (supporting); Formal analysis (supporting); Methodology (supporting); Writing-review & editing (supporting). Bea Vuylsteke: Conceptualization (supporting); Writing-review & editing (supporting). Marie Laga: Conceptualization (supporting); Writing-review & editing (supporting). Elske Hoornenborg: Conceptualization (supporting); Writing-review & editing (supporting). Maria Prins: Conceptualization (supporting); Writing-review & editing (supporting). Henry J. C. De Vries: Conceptualization (supporting); Writing-review & editing (supporting). Christiana Nöstlinger: Conceptualization (supporting); Formal analysis (supporting); Methodology (equal); Writing-review & editing (supporting).