Risk, reassurance and routine: a qualitative study of narrative understandings of the potential for HIV self-testing among men who have sex with men in England

HIV testing is essential for the diagnosis and treatment of HIV, and alongside widely available antiretroviral therapy (ART) has facilitated an enormous decrease in HIV related morbidity and mortality. The first HIV antibody test became available in 1985 [1], and for many years testing was only accessible in clinical settings with significant emphasis placed on pre and post-test counselling by trained healthcare workers. Throughout the 1980s and most of the 1990s, in the United Kingdom HIV testing was primarily used as a diagnostic tool and was not actively promoted in the name of HIV prevention, which in combination with lack of any effective treatment resulted in comparatively low rates of uptake [1].

As understanding of the public health benefits of reducing undiagnosed infection and, latterly, treatment as prevention (TasP) grew [2–7], testing underwent significant expansion. Policy change and the introduction of low-cost rapid diagnostic tests (RDTs) facilitated this. In 2008 the British HIV Association (BHIVA) UK guidelines recommended annual HIV testing among men who have sex with men (MSM) (or more frequently if at increased risk) [8]. More recently, the 2014 British Association for Sexual Health and HIV (BASHH) guidelines call for annual testing for MSM with 3-monthly HIV testing for MSM following ‘unprotected’ sexual contact (oral, genital or anal) with a new partner, following an STI diagnosis, or the use of drugs which might be a marker of risk behaviour [9]. RDTs meant testing could now be delivered in a variety of settings not just by clinical staff but also community health workers and volunteers.

Testing interventions in the UK proliferated both within and beyond clinical settings [10–14]. More recently testing has moved into the domestic and private spheres with the introduction of self-administered testing methods such as HIV self-sampling (HIVSS) and HIV self-testing (HIVST) [15, 16]. Individuals utilising HIVSS collect the sample themselves, then post it to a laboratory who processes it and returns a result. With HIVST, individuals perform an RDT themselves and interpret their own result. Currently available HIVSTs in the UK are all 2nd generation, meaning that the period between infection and a reactive result is around 12 weeks [17]. HIVST is simply the latest technological innovation, which further increases the volume and variety of ways in it is feasible to establish one’s current HIV status. HIVSS is provided by the statutory and voluntary sectors across much of England, while HIVST is currently only available commercially (not withstanding sporadic public provision through pilot and demonstration projects).

Public health discourses around testing have also shifted, and increasing the frequency with which MSM test has become a dominant focus of HIV prevention efforts. Indeed, recent campaigns (see Fig. 1 for an example) for groups most affected by HIV in the UK have moved on from focusing primarily on condom use to an almost exclusive focus on the promotion of HIV testing [18, 19].

While expansion of the volume and variety of testing opportunities has increased rates of HIV testing and reduced undiagnosed infections particularly in MSM [20], about half of MSM continue to test less frequently than advised in the BASHH and BHIVA guidelines and about 25% have not tested at all [21–24]. Six monthly testing uptake estimates for MSM at higher risk vary between 27 and 60% depending on the study [21, 22]. Meanwhile social norms emphasising frequent HIV testing among MSM have become pervasive, with conceptualisation of personal responsibility increasingly emphasising testing, rather than condom use alone [19, 25]. HIV testing is also the gateway to biomedical HIV prevention interventions, including pre (PrEP) and post-exposure prophylaxis (PEP) as well as TasP [4, 26, 27].

HIV testing discourses are both varied and dynamic. Commonly understood narratives around patient initiated HIV testing include: testing in response to a risk event; because of symptoms which may be indicative of infection; out of a feeling of responsibility to oneself or partners; or as part of health-seeking routines [25, 28]. Testing for HIV is embedded in particular cultural contexts and frameworks that can link HIV infection with deviance, promiscuity, shame and notions of immorality, making testing decisions particularly complex [29].

As HIV testing services continue to expand, HIVST may be utilised by commissioners as a low cost alternative, triaging patients unlikely to have HIV infection away from facility based testing. HIVST is also thought useful for increasing the frequency of testing for those who are most at risk and test insufficiently often [15, 27, 28]. It is crucial to understand, however, what role HIVST will play alongside the diverse array of HIV testing interventions available to and targeted at MSM in the UK. Further, HIV testing is often promoted and discussed by MSM in offline and online environments [18]. As interventions are delivered within particular social contexts, understanding normative discourses through narrative analysis in the groups which they target is an important component in understanding intervention potential upon implementation. This is particularly true in light of strong critiques of the responsibilisation of public health often put forward by sociologists concerned about the impact of the convergence of identity and the lived embodiment of a risk state among the ‘most’ at risk in society [29–31], a process if often referred to as biomedicalisation.

This study therefore aims to understand how HIVST compliments existing testing strategies considered or adopted by MSM. We do this by analysing MSM’s narratives surrounding HIV testing and their accounts of HIVST’s potential future roles. As a study grounded in implementation science, a field which seeks to translate research evidence into policy and practice [32], our results will be of interest to policy makers and commissioners who seek to understand the potential role HIVST will have in the sexual lives of MSM in high income settings. In particular, this manuscript focuses on the implications of these narratives for feasibility, potential intervention reach and equity concerns.

Full methods for this study are reported elsewhere [33]. Below we include an abridged version.

Our analysis identified three main narratives surrounding potential reasons to test for HIV: (i) testing in response to a specific risk event; (ii) as reassurance when there was a small amount of doubt or anxiety related to HIV; and (iii) in response to social norms perpetuated through peers, HIV community groups and the medical establishment to test regularly for HIV. During FGDs we did not ask our participants to describe their motivations or the anticipated motivations of others to seek HIV testing. Rather these narratives were volunteered within groups and explored further when appropriate. Here we describe each narrative about HIV testing generally in turn and then examine the utility of HIVST as a testing technology in response to each of these motivations.

In our focus group based study involving 47 MSM we found three main narratives surrounding motivations to test for HIV: i) in response to risk events, ii) as reassurance, and iii) testing to satisfy social and medical norms. HIVST had limited utility for men when testing in response to specific risk events except in the case of significant structural barriers. However, HIVST was considered to have utility when seeking reassurance, and was thought useful when testing to satisfy the needs and expectations of others around regular testing. There was some ambivalence about the incursion of a clinical intervention into the home. While health care professionals see HIV testing as a gateway to prevention strategies such as PEP, PrEP and TasP; this discourse was largely absent within FGDs perhaps indicating that these interventions are envisioned to take place within clinical services thus diminishing the potential of HIVST in these.

Based on the narratives we present, self-testing following risk events will likely be limited to those for whom existing service provision is insufficient to meet immediate needs based on structural or perhaps personal barriers to testing. Analysis of these narratives suggest that widespread adoption of HIVST in response to risk events is unlikely. Rather, men who are testing out of concern following CAI will likely continue accessing clinic based services, partly because of the much valued support from staff, partly because of the acknowledgement of the importance of STI testing and because of the longer window periods of current HIVSTs compared to clinic based POCT. The provision of self-sampling/testing kits for bacterial STIs alongside well developed and easily accessible pathways for men to access confirmatory testing for HIV and other STIs may go some way to countering this concern, potentially also providing a clear link between individuals who are self-testing and clinical services. This is in contrast with recent Scottish data which indicated that MSM were willing to use HIVST following a risk event, although which also reports similar concerns around support [37].

Early adopters of new prevention technologies are likely to have distinct motivations for accessing interventions, usually reflecting an unmet felt need [38]. These narratives are likely to be more indicative of how middle and late adopters will perceive the utility and potential of HIVST upon roll-out. It is essential to understand these because they will shape initial reception, as the potential of an intervention is understood primarily in specific cultural spaces rather than through individual clinical or health promotion interactions. These motivations will also likely change over time as MSM experience HIVST and incorporate the new opportunities it affords into their health seeking frameworks.

Obligations of citizenship are central to MSM’s understanding of the utility of HIVST. Under notions of biological citizenship individuals are expected to take an active role in their health, including managing and monitoring risk. Good citizenship is demonstrated by MSM through complying with the testing behaviours which are expected of them. In doing so individuals organise around biomedical categorisations and develop programmes of self-care in collaboration with experts. Responsibility is demonstrated through these regimes, and compliance with these are central to belonging within these groups [31, 39]. This process has contributed to a reframing of biological or behavioural vulnerability into a socially lived health state similar to disease [30, 39]. This is particularly true for those deemed ‘most’ at risk by epidemiology and the allied public health sciences [29].

Testing imperatives disseminated through varied public health actors have led to increasing uncertainty amongst MSM about the stability and durability of one’s HIV status even in the absence of significant risk. Consistent with an emerging body of literature [40–42], our findings suggest that HIV risk is being conceptualised as a health-state worthy of intervention in itself.

While notions of biological citizenship within this group have historically focused on maintaining condom use [43, 44], the emergent paradigm supplements (and in some cases replaces) these messages with those reinforcing obligations of monitoring [45, 46]. This has been constructed through the emphasis on testing regimes disseminated by biopolitical actors such as policy organisations, health promotion agencies and practitioners, epidemiology, clinical staff and MSM themselves. While much of the literature exploring this emerges from those investigating PrEP and PEP use in individuals at high risk of HIV infection [41, 42, 47], our research indicates that this is a wider process which also includes HIV testing norms and imperatives.

In the context of discourses of biological citizenship, men perceive HIVST to have dual roles: firstly as a tool to manage anxiety around one’s HIV status based on an acknowledgment of HIV vulnerability arising from being homosexually active. Secondly, HIVST is useful in complying with social norms and meeting the demands of biomedicine. In this context HIVST is not necessarily seen as problematic; the anxiety producing the need for re-testing is very real and HIVST has potential to reduce this. Similarly, the frequency with which MSM are expected to test represents a significant burden on time. HIVST allows men to meet these needs in a more efficient way, both for themselves and potentially for health services.

It is important to note that individuals interpret risk subjectively through their own cultural and personal frameworks which often are only partially based in biomedical understandings of the potential for HIV transmission. While men do not currently appear to perceive HIVST as particularly useful in testing following a specific risk event because of the relatively long window period with currently available HIVST and lack of clinical support, that does not necessarily mean that the technology will not facilitate increased testing or reduce the time from infection to diagnosis. These current dominant narratives do however pose a challenge to the notion that HIVST roll-out alone will reduce health inequalities by cost-effectively preventing onward HIV transmission by reaching significant numbers of high risk MSM who might not otherwise be testing frequently enough.

Understanding the importance of testing as anxiety reduction and as routine indicates that developing HIVST interventions integrated within existing services to formalise supplemental testing routines within a package of care could be feasible and highly acceptable. These interventions could emphasise support through clinic visits and remote portals, thus perhaps addressing some of the well-being concerns generated by anxiety brought about by biomedicalisation of risk. Such a package of care remains unlikely to address equity concerns, however, as it will by nature facilitate a more formalised and structured clinical relationship between already engaged patients and clinical staff. Indeed, based on the findings we present here, penetration of HIVST in the medium term (when it becomes widely available at no cost) will perhaps be partly limited to those who are already engaged in sexual health care, therefore not addressing health inequalities in the way envisioned by public health practitioners.

Finally, our findings indicate that self-testing extends the reach of risk governance from the clinic into the home and will probably reduce the time interval between tests for many MSM. Like many previous technological innovations, including RDTs and HIVSS, self-testing reduces the time burden to know one’s HIV status, an increasingly vital demonstration that an individual is a ‘good gay man’. Whether HIVST also reduces the time between infection and diagnosis across the population of gay men acquiring HIV remains to be seen.

In conclusion, MSM in our study typically did not identify HIVST as a useful intervention when testing in response to risk unless significant structural barriers to testing existed. When testing to seek reassurance or in response to the expectations of biomedicine around regular testing, HIVST was considered to have utility. There was some ambivalence about the incursion of a clinical intervention into the home.