Design

In this study, a descriptive qualitative study was used to explore insights on enablers and barriers to the uptake of HIVST kits. PSI and SFH conducted qualitative market research on HIV self-testing (HIVST) in the private health delivery systems (pharmacies and PPMVs) in Nigeria. The study was conducted in 3 PEPFAR priority states of Anambra, Lagos and Kano and represents the key geographical mapping in terms of HIV prevalence, unmet needs for HIV/AIDS treatment services and actual size estimation. This helps to understand the environment for users, how they interact with the private health delivery systems and the enablers and barriers to intervention on both the demand and supply aspects.

Journey map operation

The participant journey-map was adopted from studies [15–17] and used to explore the pathway to identify potential pivot points, link encounters, understand perspectives that facilitate insights, promote proactive delivery of people-centered care, and improve study reliability. Our method, therefore, explored this approach to gain insights into the participants’ processes before taking up and using HIVST in private sector. This was subsequently used to create a narrative of the sexually active users’ thoughts and emotions, leading to visualization of their actions when taking up and using the HIVST kits.

In this study, we distilled the journey for taking up and using HIVST kits through the attract, purchase, and use stages and later diverges based on their perceived HIVST results. For those who receive a non-reactive result, they proceed to link through the HIV prevention continuum [18–20]. They begin with a link to the HIV prevention services stage followed by retention in such services and later adherence to prevention interventions with repeated testing for HIV acquisition monitoring. While those who are perceived to have a reactive result proceed to the confirmatory testing, link to HIV care and treatment, and reporting stage. At each step, many factors inhibit their willingness and ability to use HIVST, which was reported.

Recruitment and participants selection

The study involved sexually active youths of different genders, residences, HIV status and past experience of using HIVST across Nigeria for FGDs and IDIs. We conducted 45 IDIs and 7 FGDs with 80 sexually active males and females across Anambra, Kano and Lagos states. IDIs and FGDs respondents were reassured that data that could potentially identify a person or location was anonymized and could not be traced back to them. Electronic data were password protected.

The recruitment of participants was carried out using clearly spelt-out eligibility criteria and a convenience sample drawn at random from a list of participants provided by community-based organizations (CBOs) and civil society organizations (CSOs) who fulfilled the criteria and were willing to write informed consent.

The inclusion criteria were: 1) sexually active young people between 18 and 29 years residing in urban or peri-urban settings in Nigeria that have either taken an HIVST or not. 2) willing and able to provide verbal informed consent and consent to an audio-recorded session.

Data collection

Data was collected through validated IDIs (S1 Appendix) and FGDs guides (S2 Appendix) that was developed after an extensive search of published literature [12, 14] and translated into the four dominant languages of Nigeria (English, Yoruba, Igbo, and Hausa). They were then validated through face and content validity to encourage the natural flow of conversation. The face validity was assessed by a team of experts from the Busara Centre for Behavioral Economics, SFH, PSI, Department of Public Health, Federal Ministry of Health, NACA and NASCP with relevant experience in the field of HIV. The content validity was also assessed by an independent team of experts (public health, epidemiologist, infectious diseases physician, and languages expert from the different languages used). The independent team of experts suggested some modifications including the flow and paraphrasing some sentences to be clear, unambiguous, essential and relevant. Thus, this gave us a final copy of our guide used in this research.

The project team from SFH and Busara who were part of the face validity team carried out the qualitative research and collected data in the four dominant language of Nigeria (English, Igbo, Hausa, and Yoruba) using the IDIs and FGDs guides. IDIs were done in English over the phone, while FGDs were conducted in-person for the sexually active youths using the four languages in the three states. We conducted gender-specific FGDs—one FGD was either all men or all women, but we mixed HIVST users and HIVST non-users. During both the IDIs and FGDs, we asked respondents open-ended questions regarding their opinions and perceptions of HIVST, and for IDIs with HIVST users, we asked questions about their past experiences with taking up and using HIVST kits. Triangulation of data from three sources (focus group transcripts, past experience detailing enablers and barriers, and individual questionnaires of sociodemographic) and interviews complemented involving individual prioritization of the barriers and facilitators to HIVST [21, 22].

Using information collected, we identified enablers and barriers to HIVST kit uptake and use, and then systematically mapped these enablers and barriers onto the journey map for taking up and using HIVST kits in the private sector, allowing us to clearly identify opportunities to leverage and challenges to overcome.

Data management and analysis

All data analysis were done based on Graneheium and Ludman system to assure trustworthiness [17]. Interviews were audio-recorded and transcribed verbatim. In-depth interviews (IDIs) and focus group discussions (FGDs) were audio-recorded, transcribed, and translated into English. Thematic analysis (TA) was used to analyse and code the data using a qualitative software package—Nvivo. Using information from the IDIs and FGDs, we identified enablers and barriers to taking up and using HIVST.

Ethical considerations

This study was approved by the two ethical review committees, the National Health Research Ethics Committee of Nigeria (NHREC)–NHREC/01/01/2007-29/06/2021 and the Nigerian Institute of Medical Research (NIMR)–IRB/21/043. Permission was also sought from the study participants through written informed consent. This was done after the benefits and objectives of the study had been fully read by them and all clarifications provided. All research activities were conducted in accordance with the Declarations of Helsinki and other policies and regulations required by the ethical committees. All respondents consented to participate, and they were free to voluntarily withdraw at any time with no attraction of penalty at any time during the research.

Enablers and barriers to taking up and using HIVST in the private sector

Description of the sexually active young people journey map:

In this study, seven individual steps were mapped out in detail and then condensed into a single journey map. The steps are the attract, purchase, use, confirmation testing, link to HIV care and treatment, link to HIV prevention and reporting stage, which are all crucial in developing effective and sustainable HIV self-testing care.

Throughout the entire journey map:

Fig 2 shows the enablers and barriers for taking up and using HIVST Kits in the private sector at various stages. Most sexually active males and females from our participants were aware of the factors that put them at risk of HIV, and most possessed the self-awareness to know that their behavior may put them at risk. Key themes as stages were highlighted, which shows the major enablers and barriers at every important stage which might either undermine or enable the use of HIVST in the private sector.

Download:

• PPT
  PowerPoint slide
• PNG
  larger image
• TIFF
  original image

Fig 2. Enablers and barriers to taking up and using HIVST kits in the private sector.

https://doi.org/10.1371/journal.pone.0285003.g002

Enablers and barriers at the attract stage

The major enablers that attracted sexually active youths to take up and use HIVST were: influence from friends in the health sector, online/social media or print and radio advertisements, awareness of the need for HIV testing, privacy/confidentiality of testing at home, community sensitization with friends and curiosity on alternative ways of testing. While the barriers included fear of discrimination from buying kit in public, perceived lack of awareness among peers, fear of reactive result, low-risk perception among peers and avoiding being treated as sick.

Enabler: Privacy/confidentiality of testing at home

The key enabler, which almost all participant related to, was the privacy and confidentiality of testing at home. Participants were attracted to the idea of testing at home and in private, without any influence from external parties. So, no one would know they took the test, and they could keep their results to themselves.

“What really got my attention from the onset was the fact that you can do it at home without anybody knowing about your status, so it was easy to make the decision to take [the HIVST kit]."

- Male, Lagos, 25yrs, Peri-urban

Barrier: Fear of discrimination from buying kit in public

The majority of participants at the attracting stage were afraid of being judged for buying the kits at a pharmacy by people within the community. They said they either would not buy the kit at a pharmacy or would go to a pharmacy in a neighboring community.

“That [pharmacy] won’t be comfortable for me considering how most people in the society view PLWHIV as sexually promiscuous individuals. Also, there are occasions where I get to meet attendants who are not professional in keeping customers’ status confidential…."

Male, Anambra, 25yrs, Urban

Enablers and barriers at the purchase stage

The key enablers identified by the participants were purchase and use at customers’ convenience, bundling purchasing with other health purchases, privacy with face masks and COVID-19, habitually buying condoms at pharmacies, online pharmacies in urban areas, and limited hassle factors to obtain HIV testing services. Contrastingly, the barriers in the purchase stage of HIVST in the private sector highlighted by the majority of participants include the convenience of subsequent care at health center, lack of awareness that kits are sold at pharmacies, insincere and untrustworthy pharmacists, big packaging and high price.

Enabler: Bundling purchase with other health products

Participants said buying HIVST at a pharmacy would be convenient, as they usually buy other health products at pharmacies, which they can also purchase while buying HIVST.

“Yes, it is very convenient to buy [HIVST] from the pharmacy mainly because the pharmacy is a place where you can get medical products for general public consumption. Hospitals may not be easily accessible.”

- Male, Anambra, 24yrs, Urban

Barrier: Price

Participants thought the kits were too expensive. They were willing to pay between 100–1,000 Naira (US$ 0.2–2) for the kit.

“Myself and a lot of others also complained of the cost of the kit and considered it quite expensive. We felt most young people may not be able to afford it."

- Male, Anambra, 28yrs, Peri-urban

Enablers and barriers at the use stage

Overall, the majority of the participants thought HIVST kits were easy to use. They reported major enablers of using HIVST as having easy and salient instructions, past experience with other self-test kits, support from close friends, self-confidence and self-efficacy, painlessness of oral-fluid-based tests, autonomy, and confidence in HIVST efficacy. The major barriers were lack of confidence in HIVST from user error, lack of counseling from healthcare professionals, lack of confidence in HIVST from unexpected results, skepticism of oral-fluid-based kits and perception of doctor’s abilities.

Enabler: Autonomy

Majorly all participants liked that they could use the test where and when they wanted.

“Seeing the kit gives me joy. At least I can do it on my own, do it for anybody. I can just do it at my house, even in my office. I can do it anywhere.”

- Female, Kano, 29yrs, Peri-urban

Barrier: Lack of counseling from healthcare professional

Most participants lamented that when doctors administer an HIV test at a health facility, they comfort and counsel patients upon receiving their results. Self-testing in private does not offer these counseling services that are often inherent to testing at a health facility.

“It shows that it’s HIV, but what I heard from the doctors is that it is not the worst…when I tested and it was confirmed that there is HIV, then I said AIDS, and he said no, it is HIV, and he said when I keep taking care of myself, I will be fine and ok."

- Female, Kano, 28yrs, Peri-urban

Enablers and barriers at the confirmatory testing stage

Participants knew they were supposed to go to the health facility for confirmatory testing should they receive a reactive HIVST result. The majority of them said that the major enablers for them at the confirmatory testing were that the HIVST had clear instructional materials, support from close friends or siblings, their perceptions of doctor’s abilities, seriousness of reactive results and perceived responsibilities of doctors. They also highlighted key barriers at the confirmatory testing stage that included a lack of salient instructions on the next steps, lack of follow-up from healthcare providers, delays caused by shock and denial, comfort with non-reactive results, and lack of money for transportation.

Enabler: Seriousness of reactive results

Participants who tested reactive trusted that the results were accurate and took the results seriously, and as a result, went for confirmatory testing. Several participants implied that it was clear that they needed to go for confirmatory testing upon receiving a reactive result.

“Of course, I went for confirmation. That is when they asked me to come back in the next 3 months."

- Male, Kano, 29yrs, Urban

Barrier: Delays caused by shock and denial

Some participants were in shock and denial over their HIVST results and waited up to two months to go for confirmatory testing.

“I felt ashamed of the result, so I didn’t want to go [for confirmatory testing]. I felt embarrassed. I felt that something could be changed through prayers."

- Female, Anambra, 21yrs, Peri-urban

Enablers and barriers at the link to HIV care and treatment stage

Many participants were able to seamlessly link to HIV care and treatment immediately after receiving the results from their confirmatory test. But they also reported that experiencing poor health, seamless linkage to care after confirmatory testing, and knowledgeable healthcare centers were the main enablers of HIVST in the private sector. The major barriers limiting the linkages to HIV care and treatment after using HIVST were delays caused by stress and embarrassment, perception of unfriendly healthcare staff, avoidance of being treated as sick and fear of status definition.

Enabler: Seamless linkage to care after confirmatory testing

After participants went to the hospital for confirmatory testing, they were started on treatment immediately and didn’t need to go back to the health center for another appointment. This process minimized drop-off.

“I went to a health facility [after using HIVST] and got a confirmation test and treatment.”

- Male, Lagos, 21yrs, Urban

Barrier: Delays caused by stress and embarrassment

Positive results after confirmatory testing evoked strong emotions of stress and embarrassment, leading some to delay seeking care.

“I started since when I was told that I am [positive]. I cried and went home. It was [my friend], she took me to one hospital, we went there, and we were attended to. [They] welcomed me in a nice way. I was interviewed by a doctor, and he gave me medicine."

-Female, Kano, 28yrs, Peri-urban

Enablers and barriers at the link to HIV prevention stage

After receiving a non-reactive HIVST result, the vast majority of participants did not do anything. To most, a non-reactive result was validation that their HIV prevention methods were effective, and they thought their knowledge of HIV prevention was sufficient.

Enabler: Awareness of need for HIV prevention

Participants were aware of the adverse effects of the disease and were self-aware enough to know they may be at risk. As a result, they consciously sought information to protect themselves, either by abstaining or using condoms. Many of these participants have friends that work in the health sector and/or have attended sensitizations on HIV.

“I usually seek information. I usually browse on my phone, read books [about] prevention and all that, and I read that one of the preventive measures is condom. Once you are using condoms, although you are not fully assured because sometimes it can burst, but I believe it is the number 1 preventive measure.”

- Female, Anambra, 25yrs, Peri-urban

Barrier: Perceived knowledge of HIV prevention strategies

After using HIVST and testing non-reactive, participants did not seek out HIV prevention strategies. Most participants use condoms, and some use PREP. Most assumed their strategies were effective or they already knew everything they needed to know about HIV prevention.

“No [I didn’t seek information on HIV prevention] because I am an adult, and I already know about HIV prevention.”

- Female, Lagos, 25yrs, Urban

Enablers and barriers at the reporting stage

Many participants acknowledge the importance of reporting their HIVST results. Some said they would consider reporting their results to facilitate linkage to HIV prevention or treatment and care:

“I think potential benefits [of reporting HIVST results] is getting access to the prevention services like PrEP.”

Although many participants recognized the importance of reporting, many said they would not report their HIVST results to anyone, largely due to issues with privacy and confidentiality. They did not want many people to know their HIV status.

As one respondent stated: “If my result was positive, I think the negative consequences [of reporting my results] could be losing confidentiality over my health status.”

Enabler: Easy to link to HIV treatment/prevention

Participants thought the main benefit of reporting their results more widely to other entities besides their hospital/health center would be access to better prevention measures or more immediate access to treatment.

“Yes, because I reported a negative result, I think potential benefits getting access to the prevention services like PrEP.”

- Male, Lagos, 28yrs, Peri-urban

Barrier: Concerns over data privacy

Participants were concerned about data privacy; if NGOs, healthcare facilities, and other organizations were careless about data privacy, someone could see their results.

“…if you carelessly keep it and somebody comes and finds it.”

- Male, Kano, 29yrs, Urban

Insights into the enablers and barriers for non-users of HIVST

Our findings reported that the majority of participants who were classified as non-users said that they did not think they needed HIVST, nor were they aware of where they could acquire HIVST. They also reported that they might want support from a close friend or sibling to use HIVST.

They also reported a low-risk perception at the attracting stage, with non-users saying they have never used HIVST because it never occurred to them or they never thought they needed it.

At the purchase stage, the majority of the participants reported a lack of awareness that kits are sold at pharmacies which might hinder the use of the HIVST. These non-users were unaware that they could get HIVST at a pharmacy, but they would be open to buying the kits for 200–500 Naira. Similarly, the majority highlighted self-efficacy and self-confidence at the use stage. Non-users have experience with self-testing, namely pregnancy self-test kits, and they felt confident with following the instructions and administering the test. At the confirmatory stage, there was a strong perception of support from close friends or siblings. Majority stated that “if they tested reactive, they would first tell a close friend or family member”, then go for confirmatory testing. Perceived knowledge of HIV prevention strategies and seamless linkage to care after confirmatory testing were reported at the linkage to HIV prevention stage and HIV care and treatment stage, respectively. At the reporting stage, the majority reported a lack of knowledge on the next steps for non-reactive results.