Socio-demographic characteristics of KOLs: Four were older than 24 years of age while six were younger; three had some or had completed secondary schooling while seven had postsecondary school education; eight were employed, one was a student and one was unemployed.
Socio-demographic characteristics of IDI participants: Nine were older than 24 years old; six had some or had completed secondary schooling while fourteen had postsecondary school education; all were single and not living with a sex partner; thirteen identified as bisexual and seven as gay men.
Findings are discussed along three thematic areas:
Theme 1 - KOLs serve as a trusted resource to promote and support HIVST for the MSM community
KOLs are a trusted conduit to promote HIVST among MSM
In recruiting participants, KOLs reported that most of the eligible individuals they approached agreed to enroll in the study. Overall the KOLs ranked the HIVST intervention very successful and were happy with the outcome and the benefit to the MSM community in Lagos state.
I had a lot of feedback when I gave them the kit and they get to use it. They call me, they thank me, and even those ones who ended up finding out that they are positive, they were happy. (KOL, 22 years, Tertiary education)
For me throughout this study the thing I love is that most of the people I recruited accepted it and I followed them up. They open up to me which made me so happy. The five people that I recruited that were reactive had not accessed the HIV testing services before. I invited them they accepted, they know their status and their success stories is that they accepted the result and I linked them to care, in which they are now doing fine. (KOL, 25 years, Post-secondary diploma)
Establishing trust was a key determinant of participant recruitment, some KOLs reported that the involvement of non-MSM, namely the research assistants conducting the study interviews and counsellors who conducted the follow-up calls, caused anxiety, suspicion and reluctance to volunteer information during the enrollment interviews. To overcome this threat, the KOLs engaged in a continuous exercise of assuring participants of their safety at the recruitment site and confidentiality of the information they provided leading to a smooth engagement and willingness to respond to the follow-up calls from the counselors.
Em ... distributing the kit have not been easy and also in a community like ours whereby there are rules that restrict MSMs …. they will like tell you that 'are you the only one coming', if you say 'no, I’m bringing somebody they will ask you another question is the person coming a community member [MSM]', that is one clause already and the next thing is 'will I be asked questions' and if you say ah! you will just be asked few questions, and if he say will he ask questions about my sexuality or my sexual orientation and you like 'yes', is another clause already, so it restricts them. (KOL, 20years, Post-secondary diploma)
KOLs’ continued support after distribution was highly valued and sought
HIVST kit users reported that they saw KOLs as a safe source of support for them and that they would prefer to reach out to a known and trusted person such as a KOL rather than call an anonymous hotline for support. Many of the MSM participants indicated that their first line of action if they encountered challenges while testing or immediately after testing would be to call the KOL as opposed to any hotline. Access to the same KOL who gave them the kit made participants feel more comfortable. By maintaining phone contact, visiting peers at home, talking to them and staying in touch, the KOLs were a constant source of emotional and psychological support to HIVST kit users. At the same time, this interpersonal communication was an avenue for HIV-related education, pretest counseling, ongoing counseling and post-test counseling. This support is crucial during the follow-up stage of the study and critical to the quality of person-centered care provided by the KOLs. The quality of the follow-up, therefore, impacted the MSM mental health and ability to manage a reactive test result. Some self-testers were therefore of the opinion that KOLs should be at the forefront of HIVST kit distribution within the MSM community. According to the KOLs, personal conviction of duty and commitment to their peers was the driving force for the successful implementation of this intervention.
I just spoke with the KOL, because [name of KOL] was the one who referred me to the study, I just felt it was not necessary to call the hot line. (HIVST kit user, 24 years, Tertiary education)
KOL distributing the kit is ideal, as they are giving you the test kit they are able to recommend you to a certain health center, you have somewhere to go to, not that you are doing it and then you are just stranded, not knowing where to go to because some hospitals don't actually know what to do….. (HIVST kit user, 20 years, Tertiary education)
HIVST distribution in the midst of rising insecurity
During the study period, the social environment in Nigeria was particularly challenging for MSM due to security-related concerns. Some members of the broader MSM community (not study participants) were arrested at a hotel during a night party, followed by detention in a police station. They were subsequently arraigned for prosecution in a magistrate court in Lagos state. The forty-two detainees had their pictures on the social media, newspapers and TV. They were also tagged as HIV-positive individuals resulting in double stigma for the MSM individuals and their families. This was a great source of emotional and psychological distress within the MSM community especially in Lagos state. Subsequently, in order to avoid attracting unnecessary attention, community members avoided gathering in public spaces. The recruitment of participants, therefore, was challenged by this environment and hence KOLs focused on one-on-one interactions, and kept group gatherings to a minimum. KOLs used their best judgment to identify various venues such as eateries, restaurants, gyms, cinemas, shopping malls considered safe to meet with potential participants.
……. because people don't want to meet up again due to what happened so it took extra effort from the KOLs to reach MSM. When we started the endline, the Research Assistants were supposed to interact directly with the participants, they were to call and book them for the interview but then she recorded that it wasn't as easy because participants were not responding but the moment she brought in the KOLs as intermediaries, everybody started coming in and that's because we have been able to establish trust……so I think that's the effect of the KOLs and trust... (KOL, 23years, Undergraduate)
….. at this point there's nothing like you gathering with five MSM because government is on it, everybody is on it, so you gathering up to five MSM is an high risk ….. me I’m scared, me I no wan go prison now my mama no know say I be homosexual, you don't need to gather five people or six people because now everywhere dey hot, everywhere is hot now. (KOL, 24 years, Completed secondary school)
In-spite of these challenges, loss to follow-up in-between the period of HIVST distribution and the end of the three months follow-up was reported by some of the KOLs. This was uncommon and mainly due to inability of the KOL to maintain contact with the participants after several attempts using all possible means. During the study period some MSM relocated to the outskirts of the state while a few relocated to other states for security reasons. The social environment was described by KOLs as “hot” for MSM (i.e., potential for harassment and arrest for those believed to be engaging in homosexual behavior) necessitating flight to escape suspicion and possible arrest. This was responsible for some cases of loss to follow-up while a few was due to some participants losing their phones and Sim cards.
A few of them I have been searching for them, I have not been able to reach out to them because of maybe they have misplaced there phones. (KOL, 20years, Post-secondary diploma)
Theme 2 – Skills and qualifications of KOLs to effectively distribute and promote uptake of HIVST kits
KOLs must be knowledgeable
KOLs spoke about the importance of intensive training on HIVST given that it was a new concept. Such training should cover other HIV related topics, especially HIV treatment and referrals to treatment facilities so that they will adequately handle the issues that might come up during their conversations with community members. Training of the KOLs on HIVST in this feasibility study built capacity among the KOLs which subsequently had a cascading effect within the MSM community. This allowed for continuous access to reliable sources of information and HIV services for the MSM community.
…… one thing I really liked about the training we had before the baseline, we were trained to answer different kind of questions about HIVST and that helped greatly. Now that you are negative, these are the things to do to continue staying negative, this, if you are reactive [positive], this and this is what to do… (KOL, 23years, Undergraduate)
…… giving the correct information of what the self -test kit is all about and giving them proper information about the HIV test and HIV in general, and if we have to find out that one of them is positive and they do not want to use this facility, we should make out time to follow them …… they should create confidentiality between them and their client to link them to confirmatory test and post-test. (KOL, 25years, Tertiary education)
KOLs must have strong social and interpersonal skills: This HIVST kit distribution intervention highlighted the social and interpersonal skills needed by KOLs to be effective. The ability of KOLs to manage individuals irrespective of their personality was key to its successful implementation. The intervention required a great deal of support from the KOLs to potential HIVST kit users after the kits were distributed. KOLs reported that the support they provided during house calls and phone calls included: encouraging individuals who claimed they were scared to use the kit, clarifying HIVST kit instructions for users on request, chatting on the phone with individual’s who were extremely anxious during the 20-minute waiting time required to read the test result, physically assisting peers who specifically requested for their presence during the testing, referring peers for confirmatory test, escorting individuals to the Population Council’s CHC for confirmatory testing, and liaising with healthcare providers at other referral sites. KOLs, for the most part, encountered peers who were interested in HIVST and welcomed and requested their support; however, they also reported that they sometimes encountered peers who were rude and unfriendly and peers who warned them to desist from calling their phone lines.
…. and then I had to be on the phone, are you ready, let's do this and then the whole twenty minutes of waiting for the result, we had to keep talking and when the results came out and they were fine …. (KOL, 23 years, Postgraduate student)
Patience and persistence was a valuable asset employed by the KOLs in this study. Most of the KOLs reported ease in promoting HIVST, it took some time to build up the momentum for interest in the MSM community. Some of the KOLs considered the early period of the study quite taxing to generate interest. They reported that in the beginning, some of their peers within the MSM community were curious and asked a lot of questions during the sensitization sessions while some were cautious and indicated that they would rather not be tested for HIV. The KOLs considered this to be a normal part of the introduction process of any new interventions. However, after a few months of continued effort, the demand creation had been established within the community, and peers started calling the KOLs and visiting the CHC to request for the HIVST kits for personal use, for partners and for friends and family.
My experience with the whole DIY study was that for the baseline, there was a little bit of resistance because this is something new, it's expected, people ask questions what is going here?, and so it was the major job of the KOLs to enlighten these people that okay this is what we are doing, this is why we are doing this and this is what this whole process is about and you discover that at the endline, the participants were the ones reaching out, let's do this test because now they know, now they've used, now they've seen how good this is, so the KOLs were not doing so much in the endline compared to the baseline (KOL, 23years, Postgraduate)
KOLs were a critical and essential resource in the mobilization and distribution process of this HIVST study named “do it yourself study (DIY)”. Although the KOLs have developed thrust with their peers within the community, some reported that during the recruitment process, they had cause to approach individuals who are known to always be on edge and suspicious about anything linked to HIV. Introducing the study to such individuals was considered to be a delicate issue requiring tact and caution mainly because such individuals will interpret the invitation to participate in the study wrongly and become upset. They presume that they are being judged and suspected to be HIV positive hence the invitation to participate in the study. According to the KOLs, they had to be cautious and tactful in those instances. They were able to recruit individuals in this group because they informed them that if they enroll in the study and received the kits, they will exercise their free will in deciding if they want to use the kit or not as well as the time they want to use it. Giving the study participants a choice was especially important because HIV testing is voluntary and the study was interested in knowing the proportion of the study subjects that will not use the HIVST kit and the factors responsible.
……..another thing that is a hindrance to the distribution of the kit is that, you giving the kit out to them looks as if you suspecting them already, they believe that my status is nobody's business, so why trying to bug into my privacy, it's later when we let them know that you are free to use it, you are also free not to use it, that is when they will like say ok, ok, ok. (KOL, 20years, Post-secondary diploma)
Theme 3 - Effective strategies used to create demand and promote uptake of HIVST
Use of information communication technology
The use of the HIVST demonstration video sent to the participants by the KOLs was considered a selling point by both KOLs and MSM HIVST kit users. The video was not bulky and easily sent to networks and individuals using a mobile phone. The live images allowed easy comprehension of the HIVST procedure by individuals with low literacy level. The video was sent at varying periods during the intervention phase depending on need and request. Its use extended beyond the enrolled participants to serve as a teaching aid for KOLs in HIVST awareness creation within the MSM community.
…I was about to talk about the video you know, if am to send the video to my social media, Facebook and WhatsApp group. I created a group, I have some few MSM, most of them watched the video and they were like we want self-test!, that they will like to you know do the test... the video, it was a success. (KOL, 20years, Diploma)
And it was as easy as I saw the video of how to use it and I tested negative with it… at first when I wanted to use it, I thought it would be very difficult, I watched the video then I read the instructions and I just did as simple as that, so no one would find it difficult to use because it's very straight to the point.... (HIVST kit user, 19years, Completed secondary school)
Harnessing the power of social networks
The KOLs used social media (Facebook/SMS and WhatsApp etc) to initiate conversations around HIVST within the MSM community, thereby increasing the reach and coverage of information about HIVST. Apart from the social media, information was sent to contacts via bulk SMS a cost-efficient method for reaching individuals who do not have internet access.
….. Like me, the first day I started writing something on my Facebook, about HIV, prevention, which people said ah! ah! why are you writing, sending like bulk SMS to people about HIV, I want to get something from them. So, they now started chatting me up privately, that you are writing so so so!!! I like what you are writing, how can I access this thing?… (KOL, 25years, Tertiary education)
Recruitment of participants via social media (the use of Whatsapp/SMS/Facebook and other platforms)
During recruitment, these platforms helped greatly allowing KOLs to tap into individuals with large networks once the KOLs network gets depleted thereby recruiting beyond their immediate networks ultimately generating demand for HIV testing within the MSM community in Lagos state.
….social media was a huge boost...I don't know how to put it. Social media helped me and my network. By the time I get to tell a friend and then my friend tells his friend...the main thing is while telling the friend or anybody, I give them the eligibility criteria, and it made it easier for me. So, at the end of the day when I invite one friend for the study, he comes with four other people knowing the fact that he has let them know about the eligibility criteria. It was then left for me to do my own screening and then they are all there for me. (KOL, 22years, Tertiary education)
In-person recruitment during home visits and meeting at hotspots
KOLs routine activities within the community including free condom and lubricant distribution were leveraged upon to disseminate information about the availability of HIVST, and the study. Routine home visits provided additional ample opportunities for HIVST education and recruitment of willing peers.
…..I apparently had to work with the numbers, call them even before the baseline...got to interact with them and also talk to them, get to know who they are, it's an eye opener to the community, so I apparently had to dive deep into the community and then try to pass messages to them one on one and some that I can't reach, I send message to them and made referrals and references, I think that was all….. (KOL, 37yeras, Tertiary education)
The flexibility of having multiple recruitment sites enabled MSM who will rather not identify with the gathering of MSM individuals or with the CHC to participate. Reluctance of some eligible participants to enroll at the CHC stems from the perception that the CHC only provides services to HIV positive people while for some people, their friends/acquaintances work at the CHC and they will rather keep their affairs private. Such individuals were directed to alternative venues by the KOLs for enrollment and in some instances the kits were hand delivered to the participants by KOLs because of logistics reasons. Population Council (PC) linkage with public health facilities was leveraged on as such individuals were encouraged and assisted by the KOLs to visit the nearest PC trained public health facility for confirmation and linkage to care if necessary. The KOLs were invaluable in the referral and linkage component of the study. They were also responsible for the sensitization and preparedness of staff in the facilities mentioned above to receive MSM clients.
What I really liked about the study was the fact that each client wish was respected and their feedback counts. What do I mean by that, for example; a client comes in and he went through the base line and was given the kit and he decides not to use it. It still counts because we get to ask them why didn't you use the kit, you understand what I am talking about, I like the fact that every client feedback counted and their wish was respected. So, it was a YES for me. (KOL, 22years, Tertiary education)
…….the process of collecting the HIVST kit for me was okay, it wasn't stressful, at least I was in school and the KOL actually brought it down to my school, so it was, it was comfortable for me. (HIVST kit user, 27years, undergraduate)
Language barrier was mentioned as a hindrance to recruitment by some of the KOLs. Not only did it delay achieving individual target for the KOL, it also limited the diversity of participants they were able to enroll. Of note was the challenge with recruiting individuals with low literacy level. Some KOLs overcame this barrier by asking their peers for assistance during screening or by simply inviting the individual to the recruitment center for the appropriate research assistant to screen for eligibility. Some KOLs opined that recruitment would have been smoother and would probably have yielded a more diversified sample for the study if they had been charged with group target rather than each KOL given a target to recruit. This method will enable them to leverage on each other’s strength while minimizing individual weaknesses for the recruitment.
In order to encourage participation of individuals working in the formal sector, the study team worked on Saturdays. This group of individuals were constrained because of their tight schedule during office hours and at the same time the study team could not go to their workplace to recruit them.
……. So, It got to some part when I told them about the eligibility criteria, even when they don't understand it because of language barrier, I make them to come here, I get to direct them to a friend, a KOL, who is also recruiting, since I can't handle this person, can just take over, and If he takes over and sees that he is actually eligible, he gets enrolled. (KOL, 22years, Tertiary education)
Especially challenging in this study was the recruitment of individuals referred to as older men (40years and older) and men of higher socioeconomic status, many of whom live on the Lagos Island. In hindsight, some KOLs observed that the pre-intervention training should have included how to specifically recruit these subgroups of men. Other suggestions for improvement include using KOLs from all the identified groups for recruitment. In this study, this challenge was partly solved by identifying and using links to older community members that offer services to this category of men.
We didn't emphasize on older people, how you can walk up to elderly people and tell them about the HIV self-test kit. We need more training when it has to do with approaching elderly people. There is difference between high class and elderly people, people in their 40’s, 50’s, 60's the way I approach them wouldn't be the same thing the way I approach my friends in their 20's. (KOL, 20years, Post-secondary Diploma)
….I don't have the power to recruit those elderly ones because I mingle with my class you cannot see me playing with an elderly person, I mingle with my age, I mingle with adolescents. Maybe we have those that are supposed to recruit adolescence and the KOL's that will recruit the older ones so it will be balanced. (KOL, 25 years, Post-secondary diploma)