Young people’s preferences for HIV self-testing services in Nigeria: a qualitative analysis

We conducted semi-structured individual in-depth interviews with young people between the ages of 14 to 24 years in October 2018. The study took place at the Nigerian Institute of Medical Research, Lagos Nigeria. The participants were purposively recruited to ensure a balance of male and female respondents and a broad distribution of participants across the age spectrum. Young people were eligible to participate in this study if they were between the ages of 14–24 years and were able to provide informed consent. The sample size for this study was set to reach saturation with regards to the emerging themes from the interviews [24]. The research team recruited participants from technical colleges, institutional campuses, and open community settings. As potential participants were approached, the research team member explained the purpose of the study, nature of the study and informed consent form. The length of the in-depth interview typically varied between 30 and 45 min. The interviews were conducted by trained interviewers, in a closed room at a convenient location. The interview sessions were audio-recorded and were conducted in English. During the interview, the USD2/OraQuick® HIV Self-Test kit (the only WHO pre-qualified product in Nigeria) and a pictorial demonstration on how to use the HIVST kit were shown to the participants but was not offered for testing. Participants were provided an incentive in the form of a phone recharge card voucher with a value of 1000 Naira (equivalent to USD3.26) to compensate for their time.

The interview guide (Additional file 1) was pilot tested among ten young people aged 14–24 years and refined based on feedback from the pilot participants to fit the local Nigerian context. The semi-structured interview guide explored 1) individual’s sociodemographic characteristics; 2) experiences with HIV testing; 3) motivations and barriers to HIV testing; 4) perceptions of HIVST; 5) willingness to pay for HIVST; 6) HIVST delivery channels; 7) other services and support tools; and 8) linkage options following HIVST. Based on the literature, we employed a conceptual model to identify service characteristics at three different levels: individual, test and service delivery levels [25]. At the individual level, the questions were focused on experiences with HIV testing (i.e. HIV knowledge, testing history) and perceptions of HIVST. At the test level, the questions were focused on preferences regarding HIV testing modalities (i.e. oral- vs blood-based self-testing) and willingness to pay for HIVST. For the service delivery level, previous testing experiences, HIVST delivery channels, and other services and support tools including pre-and post-test counseling options, types of supporting information (i.e. hotline, videos, pamphlets or secure Apps) and willingness to do additional confirmatory testing, if positive, were explored.

The responses from the in-depth interviews were transcribed verbatim in English. To avoid imposing participants’ responses on existing theories or frameworks, the research team used an inductive thematic analysis to guide the coding process and identified emerging themes as described by Virginia Braun & Victoria Clarke [26]. Two authors (CO and UN) individually conducted the initial close reading of all the transcripts to familiarize themselves with the data. Each of the transcripts was then manually coded using a pre-defined codebook which included a description and an example of each code. The coders met regularly to establish agreement related to the code definitions and quotations. Codes generated were compared across the two coders for differences and similarities and to evaluate inter-coder reliability. Discrepancies were resolved through team discussions. Codes were grouped into categories based on three domains (individual level, test level, and service delivery level characteristics) and factors likely to influence HIVST uptake. Themes were generated based on the interpretation of underlying meanings of the categories with relevant and illustrative quotes grouped and synthesized. We employed Guba’s qualitative trustworthiness criteria during and after the inquiry and throughout the coding process [27]. To ensure trustworthiness, an audit trail of the process of coding and thematic analysis was maintained and we organized periodic debriefing sessions with the larger research team. The Consolidated criteria for reporting qualitative research (COREQ) were followed to ensure quality in reporting the study [28].

Prior to participating in the study, participants were provided with detailed information on the study objectives, as well as potential risks and benefits. Written informed consent was obtained from all the study participants. Each participant was given a unique number, with which they were identified during the in-depth interview session, to preserve confidentiality. Ethical approvals for the study were granted by the Saint Louis University and the Nigerian Institute of Medical Research Institutional Review Boards.

Of the 65 in-depth interview participants, 56.9% were females (Table 1). The participants were between the ages of 14 to 24 years, with a mean age of 21.2 years (SD = 2.6). More than half of the participants self-identified as Yoruba (60.0%) whereas 26.2% self-identified as Igbo and 12.3% self-identified as belonging to other ethnic groups in Nigeria. Nearly all the participants were single (93.0%), Christian (72.3%) and had obtained a secondary education (81.5%). About 72.3% of the participants reported having tested for HIV in the past.

In terms of awareness of HIV self-testing (HIVST), the majority of participants were unaware of HIVST (96.9%), specifically the oral-based self-testing kit (which was undergoing regulatory approvals in the country at the time of the interview). Although the concept of self-testing for HIV was relatively new to most of the participants, the majority were open to using it. Participants had positive responses towards HIVST after a sample test kit was shown to them, which included a detailed explanation of the testing process by the interviewer. Generally, most participants valued their ability to take control of their health with little or no external opinions or reputes, except for a few who were outwardly opposed to using HIVST. Most participants emphasized the perceived easiness of using the HIVST kit and a few noted its similarities with other home test kits including pregnancy test kit, as described below:

If we had an HIV testing kit like a pregnancy test, it would be very good because I could just get a kit, do it in the confines of my room and then nobody’s judging me, nobody’s giving me this look, like “Maybe she’s done something. Why does she want to know her status?” (#65, Female, ever tested for HIV)

The HIVST kit was often highlighted by the participants as a measure for reducing stigma and discrimination around testing for HIV, as described below:

“You could walk into any pharmacy or store and get it [HIVST kit], that's like the best thing that could happen right now because it reduces the chances of discrimination and stigmatization. Because in the society that we live in right now, even without people knowing your actual status, they get to discriminate just because you're getting tested in the first place, and that alone brings fear to the minds of people.” (#65, Female, ever tested for HIV)

Accessibility and timing were viewed by the respondents as key decision points for using the HIVST kit against facility-based testing, noting the ability to conduct the HIV test within the confines of the home, which saves the time of going out to the clinic and avoiding long wait times:

“this is something [HIVST] that I could buy at the pharmacy when I want and I can do it within a confined space… it will also save me the stress of going to the hospital or waiting for one of those tents to be set up at an awareness event whenever they decide to. It gives me convenience.”

(#08, Male, never tested for HIV)

One participant noted how this testing modality may reach most young people and enable them to know their status when introduced in Nigeria:

“if you create the kits, it will make more people come out to check for their status, and then prevent [HIV] too because if people do not know their status, they won't be able to get the necessary treatment. So, if I could check it myself, I definitely could get the right treatment for it”. (#61, Female, ever tested for HIV)

Some understood HIVST as an alternative form of prevention (i.e. condom use) against sexually transmitted infections (STI), as two participants explained the perceived benefit of using the HIVST kit before every sexual encounter:

“let's say for a girl and boy, they're about to have sex if you meet a girl in a night club and ask what is your HIV status, you already seem unsure but this is very fast and you can use this to know if the person is HIV positive” (#02, Male, ever tested for HIV)

“before you have sex with your partner, at least you may say, “Okay, let’s just do this [HIVST]. Let me feel comfortable.” And show, the HIV test result first” (#21, Female, ever tested for HIV

Few participants who expressed mixed feeling towards HIVST highlighted that the absence of post-test counseling or follow-up care was a major concern because they believed that it could lead to suicide or personal harm after knowing the results, as opposed to testing at a health-care facility where counselors and doctors are present onsite for follow-up consultations, immediate treatment, and support:

“[after using the HIVST kit] if he/she finds out they have HIV, number one the person may not tell anybody and then the person may go into depression and maybe start doing drugs or doing other things or this person may just go and kill himself.” (#10, Female, never tested for HIV)

“Are there any directions? I don't mean how to use it. If I test and I don't commit suicide, how will I get medical advice? Do I just walk to the hospital and tell them? Because I mean that is very hard to just walk into the hospital and tell them.” (#02, Male, ever tested for HIV)

A select number of participants questioned the accuracy of the HIVST result, noting that the process “seems very quick and almost too good to be true” (#01, Male, ever tested for HIV). Alternatively, some would prefer going to the clinic to test because they believed that the blood-based HIV test done at the clinic or by a health professional gives a more accurate result. A participant explained:

“I prefer going to the hospital … Because I would know much better. I don’t know if the kit would show me the correct result, or not.” (#64, Female, ever tested for HIV)

A minority of the participants stated their concerns about the inability to properly use the HIVST kit and interpret the results without any errors or adverse events. A participant noted that there might be difficulties in using the kit if there is low literacy level, noting that:

“I just feel as though a professional should be there … It just seems as if there should be at least a level of know-how in doing it [HIVST], I just feel like somebody might get themselves injured or maybe go about it the wrong way” (#08, Male, never tested for HIV)

The cost of the HIVST kit was identified as a strong determinant for choosing HIV testing services. Although most prefer the cost of the kit to be around 500 Naira (approximately USD1.38) to 1,500 Naira (approximately USD4.15), a few suggested costs as low as 200 Naira (approximately USD0.55) and as high as 4,000 Naira (approximately USD11.07). Some argued that if the HIVST kit were to be sold at an unaffordable cost, most young people might not be willing to purchase the kit because some hospitals and non-governmental organizations (NGOs) provide testing for free or at a subsidized rate:

“If it's overly expensive most people would not want to patronize it because getting tested right now at some facilities is free. In some facilities, it is as low as 500 naira or 1,000 naira in Nigeria right now. So, if it's not so expensive, people would prefer this [HIVST] than walking into facilities” (#65, Female, ever tested for HIV)

The oral-based HIVST was preferred by most of the participants when compared to the blood-based HIV test conducted by a health worker or tester, due to fear of pain and discomfort from the needle pricking. Some participants shared the following:

“Most people, like myself, have a phobia of needles and even going to hospital to get treatment and all that, they don't really like the idea of injections. For example, my cousin, would rather take any medication than to go to the hospital to get pricked by a needle. So, I think I'll prefer using a swab in the mouth to test for HIV..” (#65, Female, ever tested for HIV)

“you won't have to stress yourself going to the hospital, injecting a needle in you to drain out your blood. And after that, you will still be waiting for the results to come out.” (#37, Female, ever tested for HIV)

Other related discussions around test characteristics included the presentation and packaging of the HIVST kit. Some felt that the branding of the kit was medical-looking, subdued and could be rebranded to look more youth-friendly and discreet:

“So it’s too naked and it doesn’t say much … it’s not something that I want to buy to use. It’s too, can I use the word vague? I think there needs to be words on the packaging. Add some colors!” (#02, Male, ever tested for HIV)

Whereas, few preferred a total package in the form of a prevention box that will include the HIVST kit, condoms, pregnancy test kit, lubricants, other STI test kits, malaria, and tuberculosis test kits:

“if there were kits that included something to test for an STI and something to test for HIV as well, that works … they could make it a total package and even have a pregnancy in there as well…” (#65, Female, ever tested for HIV)

“I would also like tuberculosis [kit]. It has to be inside [the box] because tuberculosis and HIV kind of go hand in hand sometimes”. (#26, Female, ever tested for HIV)

Among those who previously tested for HIV, the majority described their past testing experiences and the attitudes of healthcare workers as another important deterrent from testing at the hospital and thus the preference for wanting to use the oral HIVST kit. For some, the lack of compassion between the tester and the patient and fear of test result manipulation at health facilities, due to lack of provider-patient relationship and trust, were mentioned as influential factors that drive preferences for HIV testing options. For those who had never tested, the most frequently cited reason for choosing the oral-based HIVST was the issue of cross-infection related to the multiple-use of disposable needles while using the blood-based HIV testing at traditional testing venues:

“Because maybe I will get infected since they are going to use a needle and inject me, so there is fear that the needle will get infected … I am scared that [the needle] it’s not sterile … ” (#46, Male, never tested for HIV)

In terms of location to access the HIVST kits, privately-owned, registered pharmacies, youth-friendly centers, supermarkets, and online stores were the most cited locations. Participants generally associated public, government-owned facilities with less accurate HIV test results and low-quality settings; whereas private health facilities were associated with more accurate HIV test results and high-quality settings.

Specifically, few participants highlighted that they would rather obtain the HIVST kit from privately-owned, registered pharmacies than patent medicine vendors (also known as a chemist in Nigeria), to guarantee the quality of the test kit and control against counterfeit HIVST kits:

“Pharmacies could sell it as well, but not these, kind of small, small, pharmacies, like chemist shop, I mean well-recognized pharmacy should sell this Oraquick HIV test.” (#51, Female, ever tested for HIV)

Respondents valued a range of mediums for receiving supporting information to complete the HIV test, including a step-by-step guide on how to conduct the test and pre-and post-test counseling information. There was a slight preference for online video tutorials on how to use the HIVST kit and culturally-adapted pamphlets with graphic images, cartoons and minimal texts translated into three main Nigerian languages. For linkages to appropriate care and support after testing, most favored receiving post-test counseling from a younger health worker and a readily available toll-free helpline number for follow-up questions and linkage to the nearest health facility:

“if there's like a number or a helpline, maybe toll-free. I prefer toll free so I can talk to the person and the person still gives me some insight on how to go about it…” (#02, Male, ever tested for HIV)

“Maybe a general healthcare line that a person could call and then be referred to a close healthcare center around your place” (#65, Female, ever tested for HIV)

Motivations to seek confirmatory HIV test in the event of a positive result on the HIVST included, encouragement from peers, family members or healthcare worker, denial about the initial test result, lack of satisfaction of test result and the possibility of living longer under treatment and care:

“As a young person I would want to live as long as I can with the disease so that alone can spur me to want to go for confirmation and also the slightest chance that maybe the first test was wrong in the hope, probably would spur me to go for the confirmation test” (#01, Male, ever tested for HIV)

“Because I might not be that satisfied that I'm positive, first time using the HIVST, but I might think maybe it's not true, maybe it's giving me wrong details.” (#45, Male, ever tested for HIV)

Lastly, participants valued self-testing done privately or with a trusted individual compared to group (pooled) self-testing, to avoid a breach of confidentiality or invasion of privacy, as described below:

“I prefer one-on-one [HIV testing] rather than test in cliques … ” (#54, Female, ever tested for HIV)

“Most people would just prefer to do it [HIV self-test] privately. I think I would prefer to do it privately, and then if it comes out positive or negative, I'll determine who I get to tell or who should know about it” (#65, Female, ever tested for HIV)