The results are divided into the three key elements of an integrated intervention to offer SSKs in community settings, that is: issues arising in targeting SSK offers to Africans; expanding the range of testing options on offer; provision of SSKs in ways that manage privacy and HIV stigma concerns; and the practicalities of using SSKs.
Offering SSKs to Africans
While there was enthusiasm around the abstract notion of distributing SSKs to disproportionately benefit black Africans, it is worth noting there may have been some degree of selection bias within the sample, given that people were told about the topic of research at the point of research recruitment.
The SSK was often described by participants as an important means of bolstering the array of HIV testing options on offer for black African people.
I like the idea of home sampling because it gives more choice, flexibility and opportunity for people to have an HIV test. So for example, if people are worried about confidentiality, they can do the test in the privacy of their own home. And even though they still have to send the result in to a lab, at least it’s not done through a third person, having to disclose their history and why they’re worried about HIV. [specialist interview]
Although the kits were certainly not regarded as a panacea that would be able to resolve all social and practical barriers to testing in this population, specialists and non-specialists alike were interested in the extent to which the SSK offered an opportunity for increasing individuals’ decision-making about the setting and context in which they would take a test, perhaps contributing to improved health autonomy overall. A small number (of mainly service providers) hoped that widespread availability of such kits within black African communities might help to relieve HIV stigma at a deeper, structural level, as they could help to ‘normalise’ HIV testing. Not everyone agreed, as it was also mentioned that increasing the extent of privacy through the use of SSKs may serve to hide HIV even further away.
A key issue that emerged in relation to making the offer of SSKs to black Africans was the concern such behaviour would be perceived to be driven by racism and discrimination, a matter raised by both specialist and non-specialist participants as being a reflection of the problematic power relations in these settings. In addition to the divisiveness that such an approach might be seen to represent, there was also a concern that service providers undertaking ethnic targeting might do so simply based on skin colour, and that such an approach would be complicit with the homogenisation of highly diverse cultures and communities. Additionally, some participants felt that such judgements could be based on mis-guided understandings of whether someone looks ‘black enough’ to be considered as African. All of these contributions demonstrated participants’ recognition of, and concern about, the way that power imbalance pervades African people’s engagement with HIV testing (a behaviour that is still considerably stigmatised in African communities) and with health services in general. Many African participants (both specialists and non-specialists) described previous experiences of racism, being patronised and being concerned about a lack of fully informed consent in health settings, and this extended to a concern about providers’ judgement and communication strategies when it came to HIV. Having said this, there were also participants who pointed out that targeting those groups that the epidemiological data shows to be in greatest need, is the best use of limited resource:
Participant 1: I have trouble just targeting just Black communities with that kit, for me it has to be universal for everyone I wouldn’t like to just target a specific population group.
Participant 2: This is screening! If the epidemiological studies that there’re high prevalence and new incidence rate in that race, in that particular community, that is really…really where resources should be. [service provider group]
Some suggestions to help ameliorate potential harm from targeting included: ensuring that African people are involved in designing and delivering targeted interventions; ‘bundling’ HIV testing in with other ethnically targeted interventions such as sickle cell and blood pressure screening; and ensuring that publicly available materials do not flag up the link between Africans and HIV prevalence, as this information can be misconstrued and misused by a wider audience.
Quite apart from the matter of targeting SSKs based on African ethnicity, were a series of further concerns about the fact that SSKs may not guarantee African users the sort of sustained interpersonal engagement and support traditionally tied to pre- and post-test HIV counselling. So although this technology had the potential to offer greater autonomy, flexibility and choice in HIV testing, worries about the risk of suicidal thoughts and a potential for self-harm by those who were either waiting for their results, or being told them by telephone, emerged in a considerable proportion of groups and interviews. In particular, participants expressed concern about cases where a user may be informed by telephone of a reactive result, requiring confirmatory testing in the following days. Those expressing these safeguarding concerns felt that being in the physical presence of a professional for discussion of test results could help to reduce anxiety, lessen the change of immediate harm, and assure linkage to support and care services for those with less capacity to seek these out on their own; and that for these reasons, SSKs represented a less ‘safe’ option for users.
I mean generally I’m kind of definitely, sort of, pro this sort of testing but I think that’s something that has to be thought about that anyone can pick this up and they might not be in a state of mind where they’re okay to receive that news. [specialist group]
Comments such as this reveal an underlying concern that SSKs increase autonomy at the expense of clinical systems’ control, as these are frequently regarded as the only means of ensuring extended contact with prevention, treatment and support services. An assumption is therefore made that no matter what an individual tester’s preference for a convenient service, that face to face services (preferably accompanied with a point of care test with rapid result) should be deemed to be the superior option. As such, in all focus group discussions and several interviews there was a clear preference expressed for the offer and discussion of HIV testing to always involve direct contact with a highly skilled specialist provider, with the capacity and resource to undertake immediate risk assessment followed up by pre-test counselling and a point of care test (where appropriate), so that an immediate result could be delivered within the same consultation event.
I think it's very clinical [referring to the SSK], I personally would probably rather go to my GP and say here I am. And also there's something very human about having somebody…I remember my first HIV test, I was petrified, I had written my will, I couldn't think about anything else. I was stressed so how on earth I could have done this with ten drops of bloods and then post and then label and then date of birth and then this without help. What helped that day, there was a nurse who was able to talk to me. And I didn't feel alone. This [the SSK] was a very lonely procedure. [specialist group]
Some did recognise that following on from a risk assessment discussion, a specialist service provider might come to the realisation that an SSK is the most appropriate option for a particular individual. However, most held that it was unlikely to be the most appropriate first-line HIV testing intervention for most black African people. What most participants made clear is that the ideal HIV testing intervention is one that assures the availability of face to face support before, during and after any HIV test that takes place. The SSK was regarded as a technology that potentially would make users feel detached from support. These views are of particular interest given current guidance suggesting a reduced need for pre-test counselling when HIV testing [38]. To this extent distribution of SSKs was frequently characterised as being a ‘poor relation’ to point of care HIV testing.
If you're going to start offering it as an anonymous kind of thing that's not connected to services, well, what's the reason for doing that? What problem are you trying to solve by offering that? [specialist interview]
Right from the outset, then, these findings highlight a key set of tensions that emerge with screening technologies which prioritise freedom and autonomy. While these features are regarded as having potential benefits in terms of accessibility, what these technologies are seen to lack is an assurance of immediate access to support interventions. In addition, participants expressed concern about the delay in the communication of results (and the attendant stress that could result), as well as procedures for communication of results that might lack clinical robustness. To this extent, many felt that in settings where a trained specialist was already afforded the space and privacy to introduce HIV testing as an option, priority should be given to the offer of a point of care HIV test in such a setting, rather than an SSK.
Provision of SSKs: the primacy of privacy and stigma avoidance
All participants were clear about the profound challenges that HIV stigma presents in terms of willingness to engage in HIV prevention and testing interventions, in the UK just as much as anywhere else. The implications of this can be even more profound for those who are marginalised by uncertain immigration status, precarious or under-employment, living in a society pervaded by racism and xenophobia [7]. HIV-related stigma at structural and interpersonal levels represents a clear challenge to successful intervention to promote HIV testing within this sub-population. It predicates against self-perception of risk, and even where an individual may overcome this, it then promotes fear about being seen to access an HIV testing service, because of the social implications that may follow.
They rather, you know Africa, we rather die than to expose ourselves. You understand, we rather… If not for my pregnancy as [XXX] said, I wouldn't go, I wouldn't. Do you understand? [non-specialist group]
As a result, our analysis revealed a profound (and often conflicting) set of accounts about the need to afford privacy in order to discuss and facilitate the undertaking of HIV testing among black African people. These are by no means new concepts for the field, but this emergent technology raises a number of new considerations, particularly in the way that the demand for privacy emerges from and potentially impacts upon HIV-related stigma. For instance, non-specialist participants were highly sceptical about offers and distribution of SSKs by community pharmacists and primary health care practitioners that would be free of judgment or microagression [39], alongside concerns that confidentiality might be breached (in this way, the power dimension emerges again).
As a result, the privacy and confidentiality afforded to individuals in each potential SSK distribution setting was the overriding factor that helped participants gauge its suitability. To make matters more complex, for every potential SSK distribution setting that was proposed as having ideal privacy protections by some participants, others were quick to disagree, by examining a new set of confidentiality concerns. Therefore, while some saw GPs as having an ideal combination of privacy and medical expertise, others worried that Home Office officials could be notified of an outcome, and there were concerns that even the discussion of an HIV test could persist on a medical file with negative consequences.
But for those who have come through that route, there were also a whole package of concerns about if you disclose your name and health status, would that affect the asylum decision. [specialist interview]
While some argued that ordering such a kit to be delivered through the post at home might be ideal, this suggestion was almost always vetoed by others who felt that most black African people in the UK did not live alone, and the arrival of such a kit in the post (or even the carrying of a package that is distributed in the community) would always elicit questions about what is inside.
The kids can…you know kids, they like playing and it’s, like…I don’t know, maybe neighbour kids, the one who reads, is there and stuff. And then he starts, hey mum, I was next door, I’ve seen this. [non-specialist group]
These data demonstrate that we cannot underestimate the extent to which considerations of privacy, and its limits, are at the centre of considerations for SSK feasibility and acceptability among black African people in the UK. Our participants were at pains to emphasise that many in this target population will lack the power to act as independently as such testing models often presume, as demonstrated in the comment below.
Another thing that’s comes from, I think, this would make, raise conflict between, for example, a man, wife and husband, for example they are, let’s say, an example of, there are those, kind of, communities, if a man doesn’t want something, that mean how, a woman can’t do anything, so, a woman can want to, to just do the test, but there’s no way, nowhere to hide […] what about sending it and receiving the, the, the result? […] I think if the man is okay with what you are doing, everything in the household is fine, it’s only when the man is against what, you know, is being, you know, the information that is being given out at that time, maybe they say home testing kits, you are watching telly and automatically the man says, oh, the man says, oh, this is not going to happen in my house, and with you as a woman, you want to do it, that’s a no-no in your house, so, it’s really hard for them. [specialist group]
The prevalence of such issues present considerable challenges to the introduction of a technology that is meant to assist in circumventing the problems of low HIV testing uptake among black Africans. They remind implementers to be cautious about not introducing new problems while trying to address existing ones.
At the same time, among the beneficial elements that participants associated with SSKs, privacy, discretion and the capacity to determine one’s own status in an environment of relative anonymity were regarded as considerable strengths, particularly among those taking part in non-specialist focus groups. Being able to use a kit privately was regarded a means of enhancing willingness to test among those who were unlikely to: know about or use a sexual health clinic, raise HIV in a clinical setting, or seek out community based testing – which all relate to the potential for increased autonomy already discussed above. These mechanisms for achieving increased privacy through new routes of access to HIV testing were therefore recognised as ways to help users avoid, or at least better manage, the widely-perceived stigma which can discourage many from seeking out an HIV test in the first place.
[It’s] quite hard for some people to go and approach GPs or doctors to explain their situation. Like myself, I've been thinking about it. It's been in my mind for a long time to do a test, because I've been hearing people, I've been watching this, I've been… you know what I mean, media’s talking about it, so I don’t even know my status, but when something like this came up, if it's, like you said, I think it's an opportunity for people like me to take the chance to do it. [non-specialist group]
Interventions that increase knowledge of SSKs (by introducing them in embedded services) and demonstrate their convenience (particularly if introduced sensitively by skilled service providers) were therefore hailed by some as increasing the likelihood of HIV testing among Africans.
… especially with location, where people live, they don’t have that time to go to the hospital and go through the whole process of getting a HIV test. [non-specialist group]
At the same time, there was also some concern expressed that this extended privacy meant SSKs might contribute unwittingly to ‘keeping HIV underground’, providing cover to those who desired secretive means of confirming whether or not they are infected.
Practicalities of using HIV SSKs
Most non-specialist participants were unaware of SSKs prior to taking part in this research, and only a handful disclosed having used one in the past – so existing levels of knowledge were low. Some had heard of instant result self-testing, as there were national media reports about that technology being licenced just before the period of research; and a sub-set of these were then surprised to learn of the requirement to take a sample, post a vial of blood and await laboratory results. Participants were surprised at the volume of blood (400 μl) required for a sufficient TINY Vial sample. In particular, many specialist providers stressed that they did not think that most black African members of the public would be able to produce enough volume for a viable sample – so there was concern about the way the demands of this kit might influence willingness to use it.
I mean, we do health checks and we take blood from the finger and our machines just been changed to take a much smaller sample, we have to take 40 microns of the blood, not a big amount which is why I kind of, I was a bit shocked at this. And just getting that amount of blood is actually sometimes quite traumatic for a person. [specialist group]
In addition to discussion about fear of needles and blood inhibiting self-sampling, a few pharmacists, nurses and GPs held the view that physiologically, their black patients may have difficulty producing fingerprick samples because of a perception that they would have thickened skin on the fingertips.
Many participants across all focus groups felt that for these reasons, as well as complexities of using, labelling and sending the sample in a vial, the requirements of the TINY kits were too onerous for most people to use correctly – and some might just give up on it before they even begin, due to perceived complexity.
I think that will be quite tricky. Certainly, I don't think it’s one that you can tell them it’s that easy to do […] maybe if the test was simpler. [specialist group]
Can I be very honest? I don’t like this, and the reasons why I don’t like it is because it isn’t simple… It isn’t easy and, of course, this will not be popular. I think this is an attempt to make people laboratory people. By the time people put a jab and then put their hands and blood starts dripping, one, two, three, four, five, six, seven, eight, up to 20, I find it a bit… very, very cumbersome. It makes it very, very… It’s liable to a lot of mistakes. And so what do you then do? [non-specialist group]
Furthermore, a number of participants expressed concern that SSKs could be easily contaminated by users, perhaps by touching the top of the vial or the lid, or not cleaning the puncture site sufficiently. Others questioned the robustness of the technology and procedures on offer to the public, and felt users may worry about samples being mismatched at the laboratory. So there were issues with a lack of trust over direct engagement with providers of laboratory services. A few specialists and non-specialists also conveyed an (erroneous) concern that unskilled users might cause onward transmission through a blood spill.
In many of the discussions with specialists, they raised comparisons between these HIV SSKs and a range of kits for other conditions that are now designed for self-sampling. These comparisons highlighted that a range of kits intended for self-sampling had not been a great success (chlamydia and bowel screening kits in particular were perceived as under-used and not cost effective). In contrast, HIV specialist providers with experience using dried blood spot kits for HIV self-sampling among MSM were encouraged by the benefits that self-sampling could bring to African users.