Perceptions about HIVST, potential acceptability of peer-led HIVST and distribution of HIVST kits in existing social network groups
As already noted, study findings were organized into four themes: a) perceptions about HIV self-testing as an additional HIV testing strategy in general; b) potential acceptability of a social network-based, peer-led HIV self-testing program; c) existing social networks in the community; and d) how to distribute HIV self-test kits to members in a social network. Each of these themes is presented in the following sub-sections.
a)
Perceptions about HIVST as an additional HIV testing strategy
In general, all participants had favourable attitudes towards HIVST with most participants reporting that HIVST is easy to perform; it offers an opportunity for busy people, who do not have the time to go to health facilities, to test for HIV and, most importantly, it takes away the need to incur travel costs to access health facility-based HIV testing services:
According to me, the way I see myself and my fellow young people, they [people] will be willing to use HIV self-test kits because in most cases they are busy working so they do not get time to go to health centres for HIV testing and usually health centres are far requiring around UGX 2000-3000 [~US$ 0.5-0.8] for transport and yet I can spend a month without getting that money so if we are given those kits, it will help us to know our HIV status (Adolescent boys and young men, 15–24 years, Gwanda)
While participants liked the fact that HIV self-testing can be conducted outside formal health facility settings, they were quick to point out that individuals who receive HIV-positive self-test results should go to the health facilities to have their results confirmed. However, given that people who self-test HIV-positive may not have the motivation to seek confirmatory HIV testing at existing health facilities without any additional encouragement, we asked participants what should be done to encourage self-tested HIV-positive individuals to seek confirmatory HIV testing. In response, participants suggested a need for the peer-leader who distributes the kits to educate their social network members about the importance of confirmatory HIV testing:
Those who are given kits to distribute should counsel the people who go and get kits from them. They should tell them that if you test HIV positive, you should go to the health center. But if you give it to him/her without counselling him/her, he/she can see that she/he is HIV positive and stay back and fail to go to the health center to get medicine (Adolescent girls and young women, 15–24 years, Gwanda)
Despite outlining the benefits of HIVST, there were mixed reactions as to whether one should conduct the test alone or in the presence of someone else that they trust. Those who preferred to test alone reasoned that testing in the presence of someone else could result in one’s results being known to other people, especially if the other person fails to keep the results secret. However, most of those who preferred to test in the presence of someone else reasoned that this person can help the self-tester to deal with unexpected results, especially in the event that one’s results turn out to be HIV-positive. The latter perspective reinforces the importance of providing pre- and post-test counselling to individuals who self-test for HIV:
Considering what we have just been informed about HIV self-test kits, the whole process of HIV self-testing takes between 20-30 minutes better than all the other methods of HIV testing that we have been using. [However], how will you support yourself if you self-tested positive? Surely there is need of another trained person to be around so that you can be counselled (Adult men, 25+ years, Kasensero)
Indeed, there were concerns that some people might fail to conduct the self-testing exercise correctly if they do it alone, and that HIV self-testing might cause some people to ‘hurt themselves’, i.e. commit suicide, if they self-tested HIV-positive without anyone to comfort them, as the following quotation illustrates.
My concern is about a person ‘hurting’ himself if results of HIV self-test are positive. Because he will know his self-test results in a private place, there are higher chances of this person ‘hurting’ himself. So, if self-testing is done with someone around then such scenarios can be avoided (Adult men, 25+ years, Kasensero)
There were also fears that people who self-test HIV-positive may be reluctant to seek confirmatory HIV testing or enrol into HIV care without the support of someone else especially if they initially thought they were HIV-negative but turned out to be HIV-positive.
My fear is it’s very possible for someone to test HIV positive and [he/she] doesn’t go to the health facility to seek further HIV care especially if this person thought that he/she is HIV negative and the HIV self-test results show positive. Because he/she was not counselled enough, he/she may be reluctant going to the health facility to seek HIV confirmatory testing and HIV care (Adult men, 25+ years, Kyebe)
When asked how these fears could be minimized, most participants suggested the need to train potential users of HIV self-test kits in how to use the kits; how to interpret their own HIV self-test results, and how to deal with the different types of HIV results before they are given the kits to use. Participants reasoned that such training would help users to self-test with ease and to deal with any associated consequences. There were also suggestions that, in addition to the training, users should be encouraged to seek HIV care if HIV-positive or to protect themselves from the risk of HIV infection if HIV-negative.
Before you give him/her that kit, you should educate him/her on how he/she is going to use it to test. If he/she tests positive, you encourage him/her to go to the health center to get treatment. If he/she tests negative, you encourage him/her to protect her/himself that if he/she is going to have sex, he/she should use a condom (Adolescent boys and young men, 15–24 years, Kyebe)
b)
Potential acceptability of peer-led HIVST
Besides exploring people’s perceptions about HIVST in general, we sought participants’ views on peer-led HIVST; an approach where we intended to train local people in the community as ‘peer-leaders’ who would then distribute HIV self-test kits to members of their social networks. This approach is based on the assumption that people who belong to social networks know each other very well and can be easily reached with HIV testing services if HIV self-test kits were delivered to them by a member of their social network who has been trained in HIVST processes. Participants were particularly asked if such an approach would be acceptable to people in the community, and if so, we sought their opinions on how such an approach could be implemented in a fishing community. In response, most participants felt that the approach would be acceptable to people in the community ‘because the person distributing HIV self-test kits could be my immediate neighbour which means he is near and easy to reach, I can easily access HIV self-test kits, go back to my home and do a self-test’. Besides the ease of reaching the peer-leader, participants felt that use of a peer-led approach would make it easier for them to obtain the kits from their peer-leader at any time rather than go to the health facility which has opening and closing times:
I can access them [kits] whenever I want unlike at the health center that closes at 2pm. But I can knock at that person’s door [any time] and tell him/her to give me the kit (Adolescent girls and young women, 15–24 years, Kasensero)
Most participants reported that peer-led HIVST would help to improve people’s ability to test for HIV since the approach is private and ensures confidentiality of HIV test results. This is because the test is done in private and it’s upon the tester to disclose his/her results to their peer-leader or someone else. This approach was liked by the participants so much that some of them expressed the need to be selected as peer-leaders, reasoning that they can ably deliver the kits to their social network members and are approachable, social and trustworthy – key qualities necessary of a peer-leader:
I suggest you give HIV self-test kits to me because now I have knowledge about them and I can also explain the test procedures to my group members and distribute the kits to them (Adolescent boys and young men, 15–24 years, Gwanda)
I would like to be part of the program, however, I am a fisher man and sometimes I fish from far distance from here, where by I spend more than two days in the lake yet you might need someone who is always on the mainland. … [but] yes, I would like to be part of the team distributing [kits] because I have all the qualities, I am approachable, social and trustworthy (Adult men, 25+ years, Kasensero)
Since peer-led HIVST seemed acceptable to the participants, we asked them to identify which category of people they would be comfortable obtaining HIV self-test kits from in the community. In response, participants suggested that HIV self-test kits should be given to village health team (VHT) members or peer educators to distribute them to the people in the community.
Most people fear going to health facilities, so I would prefer that they are given to VHTs or peer educators (Adult men, 25+ years, Kyebe)
When asked about what qualities such people should have, participants mentioned that the community-based HIV self-test kits distributor should be a permanent resident of the area, someone who is not mobile (i.e. who can easily be found within the community at any time); educated to at least ordinary level of education (i.e. senior four); someone who easily relates with others, and most importantly, someone who can keep people’s secrets. Some participants suggested that peer-leaders should be trained in how to counsel other people, with emphasis put on how to keep people’s secrets:
The person who will be given the kits should be trained first on how he/she should handle people so that he is able to keep people’s secrets so that he/she is not a rumourmonger who goes on telling people’s secrets to other people (Adolescent boys and young men, 15–24 years, Kyebe)
He/she should be friendly with everyone, trustworthy, keeps secrets, a resident who can be accessed any time. He/she should be educated and enlightened. He/she should be able to counsel others (Adolescent girls and young women, 15–24 years, Gwanda)
Participants were concerned that if the community-based distributor was not good at keeping secrets, they could move in the community telling others how someone picked kits from them; something that could deter people from accepting the kits from them.
c)
Existing social networks in the community
Since the peer-led HIVST program hinges on distribution of HIV self-test kits within social network groupings by a trained peer-leader, we asked participants, through free-listing, to tell us which social network groups exist within their community; and for any existing groups, to tell us if they are ‘big’ or ‘small’ groups (the definition of what constitutes ‘big’ and ‘small’ was left to the discretion of the participants), and whether or not they were male-only, female-only or of mixed gender. We also inquired of the possibility that some people could belong to several groups within the same community. In summary, a total of 21 social network groups were identified (Table
3); of these, 11 groups were male-only; four groups were female-only, while six groups had membership of both men and women.
Table 3
Existing social network groupings, stratified by membership gender
1 | Boat pushers | √ | | |
2 | Drug user groups | | | √ |
3 | Boda-boda cyclists [motorcycle taxis] | √ | | |
4 | Local brew drinkers | √ | | |
5 | Footballers | √ | | |
6 | Netballers | | √ | |
7 | Savings/cash-round groups | | | √ |
8 | Sex workers | | √ | |
9 | Pool table players | √ | | |
10 | Talent show groups | | | √ |
11 | Board game and playing card players | √ | | |
12 | Family planning groups | | √ | |
13 | MSM groups | √ | | |
14 | Religious groups | | | √ |
15 | Fishermen | √ | | |
16 | Farmers groups | | | √ |
17 | Betting clubs | √ | | |
18 | Unbound groupsa | | | √ |
19 | Bricklayers association | √ | | |
20 | Motorcycle mechanics group | √ | | |
21 | DREAMSb | | √ | |
In general, we found that some people belonged to more than one group in the same community. For example, a sex worker could be a member of a savings group and also a netballer. Similarly, boda-boda cyclists could be members of savings groups and also belong to a group of pool table players. However, members seemed to have loyalty to specific groups, and when asked which groups they belonged to, they cited one group in preference of the other(s). This information was necessary to inform the selection of peer-leaders and their social network members at the time of implementing the proposed peer-led HIVST intervention.
Our observation was that there were four biggest groups in the three study communities, namely: fishermen, savings/cash-round groups, sex workers and DREAMS. The group of fishermen was composed of men whose primary occupation is fishing; those who do the actual fishing in the lake, and other men involved in fishing-related activities, e.g. boat pushers. Boat pushers are groups of young men whose role is to push the boat from shallow waters to the mainland when fishermen return from a fishing expedition (so that the fish caught can be removed for sale). They also serve to push the boat back to the water when fishermen are setting off for another fishing expedition. Groups of fishermen can have about 500 members or even more.
The fishermen and the boat porters/pushers have the biggest numbers of members because most adult men belong there. We are over 500 [members]. (Adult men, 25+ years, Kasensero)
On the other hand, groups of sex workers comprise all female sex workers who operate at Kasensero landing site under the leadership of a “dealer” or ‘pimp’ who acts as the ‘group manager’. Sex worker groups can have between 30 and 100 members. The ‘dealer’ is the person that men approach if they need to get a sex worker but her roles can stretch to resolving conflicts and arbitration between conflicting sex workers. Savings/cash-round groups can be composed of men, women or both men and women and exist to encourage members to save money for a defined purpose, usually under the leadership of a chairperson or group leader. Members contribute money to the group on a weekly basis. A member can borrow money from the group and return it with interest or the members can agree to receive back their savings on a rotational basis. Finally, the DREAMS group is composed of HIV-negative girls who have been enrolled into the DREAMS Project which is implemented by the Rakai Health Sciences Program. Girls enrolled in the DREAMS Project are encouraged to join existing savings groups or form new DREAMS-specific groups, and this is how the DREAMS savings group was created.
“We have “DREAMS Tusitukiremu [Let’s Stand Together]” and “Little Angels”. Those groups help girls save money every week even if its five hundred, it teaches them how to save. A girl saves the money that she has every week starting from five hundred to ten thousand. After she has acquired skills in tailoring, that money helps her rent a house” (Adolescent girls and young women, 15-24 years, Kasensero).
d)
How to distribute kits in existing social network groups
After obtaining information about existing social network groups, we asked participants how best HIV self-test kits could be distributed within these networks. Most participants suggested a need to identify someone in the group, or a group leader, who could be trained in HIVST distribution processes and be given HIV self-test kits to take to his/her social network members.
You should approach the boat pushers and tell them to select a leader, then the leader distributes the test kits to rest of the members (Adult men, 15–24 years, Kasensero)
There’s someone who heads the DREAMS program, it necessitates training that person because they can easily get to her since she is always around. They should train her so that she is the one that you meet and give the kits to (Adolescent girls and young women, 15–24 years, Gwanda)
When asked if the person selected to distribute HIV self-test kits to members in a network should be male or female, on the whole, most participants felt that the sex of the distributor did not matter since it is all about obtaining the kits, and all one needs to do is ‘ … to go and tell that person that I need a kit. He/she won’t know your results. He/she will just give you the kit and you go to your home to test’, except that some young women preferred that the distributor be a man, because women may fail to keep secrets:
“I would like to get it from a man, most women gossip a lot, they don’t keep quiet. It’s not easy for a man to give it to you and tell another man but with women, the moment you leave, she will tell someone” (Adolescent girls and young women, 15–24 years, Gwanda)
One interesting finding, which was only identified in one group of young men, was the need to give out kits along with an identifying slip. These young men reasoned that the slips given along with the kits would be important in tracking the number of kits given out and the number of given kits that have been returned. We thought this was a wise idea and we eventually adopted it as part of the planned peer-led HIVST intervention:
Let me [give] an example, we [are] here in this group that has a name, we need slips so that you give out a kit and a paper and after testing, you return the kit to the health worker. That kit should have that person’s name… those slips are going to help us note the number of kits that we have given out and the number that has been returned. We will know how many people have been able to know their status (Adolescent boys and young men, 15–24 years, Kyebe)
Suggestions on how to improve linkage to HIV care
Low linkage to HIV care after HIVST remains a critical issue given that not many people have the motivation to seek confirmatory HIV testing and/or linkage to HIV care services after an HIV-positive self-test. We sought participants’ views on the different approaches that can be used to improve linkage to HIV care following an HIV-positive self-test result. Some of the approaches explored included enrolment into community-based ART groups [where one person can collect HIV treatment from the health facility on behalf of other members in the group, and then another person does the same thing next time, and so on and so forth]; use of peer-leaders to deliver the initial ART package to their HIV-positive social network members; home-based delivery of the initial ART package by a health worker; and use of community-based HIV counsellors to deliver ART to HIV-positive individuals in the community.
In general, the use of peer-leaders to deliver ART to their HIV-positive social network members in the community was the most preferred approach when compared to other approaches. Participants argued that it would be important for peer-leaders to follow-up with their social network members (i.e. those that they gave kits to) to find out if some of them have self-tested HIV-positive. If they find that some of their members self-tested HIV-positive, they should encourage them to seek confirmatory HIV testing and, if confirmed to be HIV-positive, link to HIV care as soon as their HIV-positive status has been confirmed.
A peer educator can intervene and take HIV treatment to the homes of the self-tested individuals… [The use of a peer-leader] could be effective because the peer leader can reach his colleague who self-tested HIV positive without informing others… it is better if they get linked through the peer leader who distributed the kits (Adult men, 25+ years, Kyebe)
Those who are given kits to distribute should counsel the people who [got] kits from them. They should tell them that if you test HIV positive, you should go to the health center. But if you give it to him/her without counselling him/her, he/she can see that she/he is HIV positive and stay back and fail to go to the health center to get medicine (Adolescent girls and young women, 15–24 years, Gwanda)
There were divided opinions on the ability of the other approaches to improve linkage to HIV care among self-testing HIV-positive individuals. For instance, home-based delivery of ART was not found feasible because ‘ … this individual [the person using the kit] did a self-test and the results are known to them alone’ (adult men, 25+ years, Kyebe). Thus, while some participants thought that home-based delivery of ART could help HIV-positive people to link to HIV care, other participants were concerned that if the community got to know that a health worker usually visits their home to deliver ART services, that would make them uncomfortable.
“In my opinion it’s a good [idea] because no transport cost is involved by self-tested individuals. However, if community members become aware that a medical worker always visits a certain person in the village, they become suspicious that the person is HIV positive which may make the one [who] obtains ARVs from his/ her home uncomfortable” (Adolescent boys and young men, 15–24 years, Gwanda)
Similarly, community ART groups were not found appropriate because ‘…this person has not yet identified himself with them [members of community-based ART groups], unless you as the health workers talk to this person about the existing ART groups in the communities (Adult men, 25+ years, Kyebe). In another group, participants had this to say: ‘It [use of community ART groups] is not good, people will know that group is for those who are HIV positive. People will be afraid of it’ (Adolescent boys and young men, 15-24 years, Kyebe). However, other participants thought that use of community ART groups could be a good strategy since all members are HIV-positive and these could counsel each other: ‘That one [use of a community-based ART group] is good. You can’t gossip about me since all of us are swallowing medicine’ (Adolescent girls and young women, 15–24 years, Gwanda). This latter perception was also echoed by adolescent boys and young men (15–24 years) in Gwanda: ‘In my opinion that’s a good idea because no one who is likely to rumourmonger about the other [since] all of them are HIV positive. It will also encourage a new self-tested HIV-positive individual to enrol into HIV care because the ART group mates will share encouraging experiences with him/her’.
The use of community-based HIV counsellors to deliver ART to the HIV-positive individuals in the community received mixed reactions with some participants arguing that it could help to improve linkage to HIV care since the counsellor can counsel the individual into starting HIV treatment. However, other participants thought that if counsellors are not trustworthy, they may end up telling other people in the community which might discourage people from accepting them in their homes.
May be if the counsellors are trustworthy but he/she might give it you and then if she finds someone on her way, she will tell him/her that I was at this person’s place, I had gone to take for her/him medicine. Or you can hear people in the bar saying that this person’s daughter or this person’s wife swallows medicine, I just took it there (Adolescent girls and young women, 15-24 years, Gwanda).