Socio demographic characteristics of the participants
Twenty interviews were conducted, with 11 male and 9 female participants. Twelve participants were from the MARPI Mulago while 8 were from Kasensero HC III. Participants ranged between the ages of 19-40 years. The KP category representation included: 5 female sex workers, 3 people who use and inject drugs, 3 MSM, 6 discordant, 2 young people and 1 fisherman.
Main findings
Four main themes emerged from the qualitative study which were generally aligned to the study aim. These were: acceptability of HIVST, choice of an HIV testing approach, preferred kit distribution models and willingness to pay for the test, as presented below.
Acceptability of HIVST
All (20) participants expressed high acceptability of HIVST. Participants felt HIVST was an approach that would greatly reduce on a number of obstacles associated with current approaches to HIV testing, such as the hospital based approach. Various factors were associated with the high acceptability of HIVST as opposed to the conventional approaches. These included being time saving, cost effective, private and accessible (‘you move with your lab’). These factors were seen as motivations to use a self-test.
The other problem is having to line up, I may come but when I have no time for lining up and I go back without being tested. I will sit until the line is completed, yet here I will be alone and still go when I know whom I am (M05, MSM).
The time factor was particularly an important concern for special categories of people, such as sex workers, who work during night and sleep during day hence find day time very valuable. Additionally, some participants felt HIVST was particularly important for special groups who feel stigmatised when they go to health facilities. Particularly, FSWs and MSMs reported this concern and felt society has not accepted them and discriminates them, hence found HIVST more convenient.
Like for us (MSM), there are those who do not want to be identified. When they just want to be in hiding, but for us we bump on them. This method will be helpful when they come to know their status and take care accordingly, because they may say they have no time, and you offer them the test (M05, MSM).
Specifically, those who are likely to engage in unplanned sex e.g. those who use drugs and sex workers felt HIVST was very convenient, as they may need to test a sexual partner before engaging into sex, something not easy with facility based approaches. On the other hand, those who use and inject drugs stated that drugs can abruptly increase their sexual desire which can lead them to engage with irregular sexual partners. In this case, they will be safer by testing them first, hence the need for HIVST.
It is good because it is handy, any time when you have someone, you can use it with a customer (sex customer), because many will fear to go to the clinic. So it is safe for you to move with your own test (M10, FSW).
I was excited as a person and I thought if I can have somewhere to find them I would not be worried, because like some of us who use drugs, you may be there high on drugs and you just pick up a woman, and by the time you come to your senses, you regret your actions, […]. But when you have that test, it becomes easy for you to test yourself and take caution to protect your-self (M01, PUWD).
In addition to testing one individual, HIVST was seen as being capable of engaging many more people (through peer recommendation), and thus increase the number of people who will become aware of their HIV status.
Many participants expressed that they trusted HIVST as compared with facility based HIV testing. They reported that since they do the test themselves, they remain with no doubts about the test results. On the other hand, they felt if someone else gave them the results, there was a possibility that results could be altered (intentionally or not). A participant cited an example of false HIV test results they were given at a facility and felt HIVST would be a solution to such a problem.
The other thing is that here I will be able to see the results by myself and know that, I am like this. This is how my status is, when I can personally see the results. Because you may be told that you are OK, because it happened to me two times, by the time I came here for testing, I first cheeked myself in two places, and they were telling me that I was not ok, so someone invited me to come to this place. When I arrived, they told me that I was HIV negative, and I took long to accept it (M03, Discordant).
It therefore appears that HIVST would also possibly eliminate errors of false HIV test results resulting from transcription (recording), as participants are able to check for themselves the results of the test results. This also eliminates mistrust that health workers could provide wrong results intentionally.
Despite its acceptability, participants noted a few concerns regarding HIVST, the common one being the psychological/emotional concerns associated with an HIV positive test result. Participants felt that whereas privacy was an advantage in the HIVST approach, it also stood the challenge of lack of emotional support in case one turned HIV positive. This could also be associated with a lack of post-test counselling in general, even when one turns to be HIV negative, which requires them to be adequately guided on the next steps to maintain their HIV negative status. Others felt that this approach also may result into false results if one panics and ends up misinterpreting the test results.
Counselling for this approach is lacking. For example, if you have always known yourself to be HIV negative and you find yourself HIV positive, handling the situation may be difficult when you are alone, with no body to council you. That’s the only problem or side effect I see with this approach (M07, FSW).
The other issue is that some people have weak hearts. You may test yourself and find him reading a negative result as a positive because of panic (M06, MSM).
However, the emotional concerns were expressed by fewer (6) participants compared with those (14) who felt that was not a problem to them. Nevertheless, this concern together with the concern of linkage to care should not be taken for granted and therefore need further exploration, as this study did not have an in-depth evaluation of them, yet these have been reported in literature as significant concerns of the HIVST approach.
Choice of an HIV Testing Kit during routine 3 monthly follow up HIV testing for clients taking PreP
Participants were asked about an HIV testing method of their choice, with explanations of their choices. Of the three approaches proposed (Oral based HIVST, finger prick HIVST, facility based HIV conventional testing), participants overwhelmingly were in support of the oral based HIVST kit. Although many of the reasons for choosing an oral fluid based HIVST kit choice were associated with HIVST in general (e.g. time saving, private, accessible, as discussed in the previous section), specific factors were mentioned and are attributed to the high acceptability of the oral based kit. Participants highlighted various advantages of the oral based HIVST over the other two as being: non-invasive, not painful, no blood loss, and easy to use.
I would prefer the oral based test, because for it will not be difficult like the others. The one of a finger prick may be difficult for me to use, because I do not want to be pricked. They prick you and you get damages on your fingers (M05, MSM/MSW)
From among the three, this one of oral fluid test is the best, because, the other two are painful. You are removing one which pains and replacing it with another painful one. It is not good to feel the pain of the needle. But this one is very simple, I just rub it around the teeth. So this one is so far the best of all the three (M08, PWUD).
Other participants expressed a fear of continued blood loss during HIV testing procedures that involved blood based testing. People on PrEP were particularly concerned as they frequently underwent HIV testing, on a three monthly basis. Some felt that the continued blood loss could cause them health complications, yet with the oral fluid based test, no such fears could arise.
I have found this one (oral fluid based HVST approach) different from others because for me, I don’t want to lose my blood, because sometimes when there are checking you, they take off quite a lot of blood, but here there is no blood I lose and yet I will be sure of the results, just like the ones I will get using the blood test. So with this method, I will not lose blood and yet I will receive correct results, and I am the one who has also tested myself, I have not wasted time going to hospital, I have done the test by myself, and I have received correct results, without losing blood or experiencing pain. So I find this quite unique from other methods (M02, Discordant).
In terms of ease of use, participants found the oral based HIVST easier compared with the other approaches. For example, participants explained that the test procedure was easy for lay persons compared e.g. with the finger prick based HIVST, where the technique of drawing blood could be more difficult. Whereas this concern could result from lack of training in the finger prick approach, some felt even with training, the finger prick would still be more complex as it required one piercing themselves (which many also be feared) as opposed to only paring a test instrument around the mouth, a procedure many compared to brushing of the teeth. Hence, the majority felt the oral fluid based HIVST approach was more suitable to lay people compared with the finger-prick approach.
And sometimes you may use it (the finger prick based test) wrongly since you are not a health professional. So, it may not treat you well. But this method is so far the best (M01, PUWD).
Willingness to pay for an HIV self-test
Paying for HIVST kits was contested by the majority of participants. Although some were willing to pay, they felt if this approach is to be fully successful, it should be at no or a very reduced cost, in order to benefit the majority of Ugandans who are generally poor. In addition, the majority of KPs are individuals with poor financial status, yet these require frequent testing. Hence to help them, the tests require to be free of charge.
If this kit comes at a cost, it will be difficult for me to pay. Why…because I don’t have a permanent job which I can use to pay. But if it comes free of charge, everyone will want to use it. Because many of us do not have permanent jobs, we only get temporally jobs which pay us little income. So if you want us to use the test, and for people to like it, it is good if you give it out freely (M06, MSM).
If the test came at a cost, that is a dead deal…it’s a dead deal because not everyone has money. There are those who have, meaning it will be the rich to use them (M08, PWUD).
When asked how much they would be willing to pay, the amount ranged between 1000-20,000, indicating variation in opinion on this issue. However, the majority of participants were at the lower side, and many expressed willingness to pay so long as the figure did not exceed 2,000.
As for me I want it freely. At least if it came at around 2000, there I can afford, but still you see that even people fail to afford a pregnancy test, so when you are doing something, you also put into consideration that people fall under different categories (M10, FSW).
This finding suggested that in order for the saliva based HIVST approach to be successful, it should be free of charge and if at a cost, this should be very minimal.
Preferred kit distribution models
Various ways were mentioned in regard to the choice of where participants would prefer to receive the oral based HIVST kits. These included: both public and private health facilities, small and large health facilities, community centres and groups, plus commercial sites e.g. shops. Although many models were suggested, the motivation behind the choice was highly associated with the ease of access, cost implications and privacy concerns. For example, some preferred their current health facilities (facility based model), even if these are far from their residencies as they feel to be better understood by their primary service providers. Other participants preferred to receive the kits from their peers (Community Based Model), whom they feel identify with them, while others preferred the kits to be distributed at all levels of health care facilities to facilitate accessibility by all those who need them.
We also have our peers who can distribute them to us. Even I am also a peer, so we can get condoms and go and distribute them to the communities. So even this approach can work. They train you and you come to know how to use it. Because for me I know but there is someone who does not know. So, that approach would work, especially for us (MSMs), who don’t want to go to hospital, who can even spend a year, or six months, such people would benefit a lot more (M05, MSM).
For me I have no problem because I have many health facilities around me but there are some people living in the villages when they need to travel for about 20 miles to access it. So I request that if it is possible, the government should provide the tests free of charge and they should be available everywhere, not only in large health facilities, not only in the cities, but also in villages, so that everyone can access it easily (M02, Discordant).
Participants expressed problems likely to be associated with particular distribution models, for example, if the kits were put in private facilities, there was a likeliness that these would be sold expensively for profit gains. They also raised concerns that if kits are to be sold at other places such as shops, there was a possibility of duplication. Hence, government facilities were more preferred as opposed to private and commercial sites.
I don’t want to find it from any other place, because they are many people who duplicate. Like this test, you may find its duplicates by tomorrow. So if the government decides to bring them, we should access them from the main hospital, Mulago, from a qualified doctor (M08, PWUD).
The above findings suggest that in determining the models of HIVST kit distribution, accessibility by the users, privacy, and cost implications should be considered.