Experiences, challenges and suggestions to improve the HIV self-testing program
The results presented in this paper are organized around three overarching themes: a) peer-leaders’ experiences, b) challenges faced by peer-leaders during the HIV self-test kits distribution exercise and c) suggestions to improve implementation of a peer-led HIV self-testing program in a typical fishing community setting, as shown below.
a)
Peer-leaders’ experiences while distributing HIV self-test kits
Peer-leaders’ narratives of their experiences in distributing the kits pertain to three important aspects: the setting/venue of the HIV self-test kits distribution event; timing of the HIV self-test kits distribution event, and requests for assistance from social network members in performing the self-test, as shown in the following sub-sections:
i)
Setting/venue of the HIV self-test kits distribution event
When asked where they distributed the kits from, most peer-leaders (15) reported that they distributed the kits from their homes or from the homes of their social network members. Peer-leaders said that these were safe and private spaces for people to receive kits from without anyone else noticing, since there is a lot of stigma still attached to HIV testing. Homes also provide a conducive environment for peer-leaders to explain the HIV self-testing process to their social network members and to address any questions that arise.
“That is the good place because the person that you have found at home can get it [kit] and then keep it in his home. The person who finds you at your home takes it as an important issue. He will get it, take it home and test. If you find someone along the way or in town and tell him that X, stop there. When you give him the kit, he might be holding other things; he will not consider it as important. It would be good to find the person at home or in your home” [Peer-leader of a drummers’ group, Kyebe].
The remaining three peer-leaders, whose social network members were male youth, gave out kits from other places within the community. This is because some of the youth did not have permanent residences or locations where they could be located. A peer-leader of the Mukene (silver fish) sellers’ group in Kasensero reported that he met some of his social network members at his friend’s library while he met others at the lake shore while they were laying fishing nets. He had earlier told his social network members to collect their kits from his home but they seemed adamant. He claimed that he found it challenging to give out kits to his social network members because they were recommended to him by a member of the village health team. As a result, he spent quite some time convincing them to use the kits. Another peer-leader of a salon group in Gwanda gave out all the HIV self-test kits to his social network members from the salon because it’s where they spend their free time.
A peer-leader of the games group in Kyebe gave out kits from the pool table. He would call his members aside and request them to spare some time for him so that he could explain the HIV self-testing procedures to them. Out of curiosity, those who he wasn’t supposed to give kits to requested him to show them what the kit looked like which he did.
“ … The good thing is that, that person was around. I told him to spare a ‘minute’. I put him aside and told him that I [have] got your kit. The other people at the pool table wanted to come and see. I let them see the kit and then they went back afterwards [Peer-leader of a games’ group, Kyebe].
When peer-leaders were distributing the kits especially in the homes of their social network members, they found some of the partners of their social network members at home. These partners hadn’t been registered to take part in the HIV self-testing program. Peer-leaders had to explain to these partners what had brought them at their social network members’ homes. A peer-leader in Kyebe narrated what transpired when he went to the homes of his social network members to give them kits and found their partners at home.
“When I reached there, some of them are married. I was given kits of only men so the women used to quarrel and said that how can you only give this one, I also want to test myself to know my status. I would tell them that I was given kits for men only but not for women but next time, if it happens that they give us kits, we shall give you also … ” [Peer-leader of a footballers’ group, Kyebe].
Women who belonged to a savings group in Kyebe were worried of receiving kits at their homes because of fear that their partners might find out that they were going to test for HIV. When they contacted the peer-leader, she advised them to inform their partners about their involvement in the HIV self-testing program to avoid problems that might arise if their partners found out about their involvement in the HIV self-testing program, as indicated in the quotation below:
“Some of the members said that what if our spouses get to know. I told them that you should tell your husband before you leave that I am going to X’s place to discuss this program so I will explain to you what transpires. I told them that they should explain to those people what is going on. [Peer-leader of a savings’ group, Kyebe].
ii)
Timing of the HIV self-test kits distribution event
Peer-leaders gave out kits at different time intervals depending on the nature of work that their social network members were engaged in. Most peer-leaders preferred to give out kits in the afternoon from 2 pm or in the evening after 5 pm when their social network members were free after completing the day’s work.
“He would have finished doing all the things that worry him. He will have finished work at 2pm. We go to the playground at 3 to 4pm and we are done by 5pm so I can put him aside and explain to him that I brought the kit. You then give the kit and explain to him how it works [Peer-leader of a sports’ group, Gwanda].
One the one hand, peer-leaders of the farmers’ group preferred to give out kits between 11 am and 12 pm or later in the evening when they were free. This is because most farmers usually leave their gardens by 11 am and head home directly. It was easier to talk to them when they were done with their work. On the other hand, the peer-leader of
boda-boda riders was comfortable giving out kits at any time. Because of the nature of their work,
boda-boda riders aren’t sure of when they can be free so they hang out at their stage at different time intervals.
“Since I represent boda-boda riders, I spend a lot of time on the road so I can give it out any time. I can explain to someone as we hang out at the stage. I can’t tell you the exact time because if I told you that I will do it in the evening, evening will come when I am very busy yet I may not be busy in the morning. So, I can give out kits anytime” [Peer-leader of a boda-boda riders’ group, Gwanda]
iii)
Requests for assistance from social network members in performing the self-test
A central tenet of the peer-led HIV self-testing intervention was the emphasis on unsupervised HIV self-testing; i.e. social network members were expected to perform the self-testing procedure on their own, without any external assistance. Peer-leaders reported that, on the whole, most of their social network members were able perform to the self-test unassisted. However, peer-leaders reported that a few members asked them for assistance while conducting the HIV self-test. Most of those who asked for support were afraid of the likely HIV test results while some of them could not correctly estimate the 20 min needed to read the results since they didn’t have a phone or watch. Some of those who requested for assistance reported that they had forgotten the HIV self-testing procedures. Other peer-leaders agreed to assist their social network members because they thought that they (social network members) might benefit from additional psycho-social support, especially after a positive result.
“The other thing is that when someone tests positive, I, the peer-leader, can help her by taking her to the health center which will re-test her. I shouldn’t [leave] members alone because a person might test in my presence and then she feels weak. You told us that if someone tests and she is not sure of her results, she has to go and see the health worker but she might not go there because her/his friends will laugh at him/her. He/she can say that let me die and they bury me. It’s very helpful if I am around. I will give him/her support, counsel him/her then take him/her to the health worker to explain to him/her what else needs to be done” [Peer-leader of DREAMS
1 trainees].
Some social network members requested their peer-leaders to allow them to conduct the test from their (peer-leaders’) homes. Notably, a peer-leader of a women savings group narrated that some women weren’t comfortable with their spouses finding out that they had tested without their knowledge and that is why they chose to test from the peer-leaders’ homes to avoid conflicts with their spouses.
“I called them and they told me that it would be good for us to come to your home because we aren’t sure of our spouses. If he finds you testing yet you didn’t inform him, do you realize that he might get them and throw them away. That might bring about problems. Some said that X, we would want to do this thing with you around. We can’t go to someone else’s home to do that. I had to bring those people to my home … Some members said that X, some of us don’t have a phone or a watch, some of us don’t know how to count, it would be good for us to come and you estimate the time for us. I told them that I wouldn’t want to know your results. I want you to test from your home. But they said that we aren’t going to show you our results, we just want you to direct us and estimate the time for us and we do our work” [Peer-leader of a savings’ group, Kyebe].
This peer-leader told us some of the women in the savings group only told their male partners about their involvement in the HIV self-testing program after they had already used the kits to self-test for HIV. This did not amuse the male partners, preferably because they had not consulted them before joining the program. The male partners decided to talk to the peer-leader about it.
“ … Some of their spouses came to me and told me that what have you given to our wives, are they good things or they will cause problems. I explained to their husbands and told them that these things are good. Your wife might come and tell you to use the kit because you don’t want to go to the health center to know your status. Some men accepted it so the women are now free. If I give them kits, they can go home and test without any problem” [Peer-leader of a savings’ group, Kyebe].
b)
Challenges faced during the distribution of HIV self-test kits
Peer-leaders experienced a few hiccups that affected timely distribution of kits. These include; a) structural factors underlying the HIV self-test kits distribution process, b) hesitancy to obtain kits from peer-leaders and c) factors impacting HIV self-test kits use, as the following sub-sections illustrate.
i)
Structural factors underlying the HIV self-test kits distribution process
The distribution of HIV self-test kits was affected by a number of structural factors including social network members not being found at home, lack of correct addresses and conflicting work schedules. Three peer-leaders felt that they spent a ‘lot of time’ looking their social network members in the community to give them kits. This meant that they either had to wait for them to return from wherever they would have gone or come back again to be able to give them kits. Some peer-leaders found themselves visiting the homes of their social network members several times to be able to give them kits.
“The challenge I experienced is that I would go to someone’s place to take the kit but when he is not around. He went to this place and you have to wait for him to come back and if he comes to town, you tell him that I have your kit that the health worker told me to bring to you. He tells you that you wait, I am in a hurry but I will come back. He refuses to come back and you have to look for him” [Peer-leader of a games’ group, Kyebe].
ii)
Hesitancy to obtain HIV self-test kits from peer-leaders
Since HIV self-testing is still a new HIV testing strategy in most of the study communities, some social network members were hesitant to obtain the kits from their peer-leaders. A peer-leader of the
Mukene [silver fish] sellers’ group reported that he found difficulty convincing three of his social network members to take their kits although they had initially indicated that they would take them. There were fears among some youth that they were being used as trial subjects in the HIV self-testing program; so, whenever they were contacted, they pretended to be busy with work. Peer-leaders had to provide a little more explanation about the study before they convinced them to take their kits.
“The only challenge I got was to explain to them a lot about that kit. You know the youth; you can talk to him as he pretends to be busy and is trying to make money” [Peer-leader of a Mukene [silver fish] sellers’ group, Kasensero].
iii)
Factors impeding HIV self-test kits use
To be able to use the kits successfully, it is imperative that users know how to read and write – at least they should be able to tell the time since they need to time the HIV self-testing process. This is because the HIV self-test kits package comes with user instructions (including pictorial illustrations) in English as well as in other local languages to help users perform the test on their own. However, some peer-leaders reported that some of their social network members had difficulties understanding the HIV self-testing procedures. This was particularly the case with social network members who were illiterate. As a result, peer-leaders spent a ‘lot of time’ explaining the HIV self-testing procedures to their members. Unfortunately, some members failed to grasp how to conduct an HIV self-test and requested peer-leaders to help them while they were performing the test.
“All the members that we educate don’t understand at the same rate, some of them disturbed us. You would educate him but he still feels that there is something he hasn’t understood so you had to spend a lot of time educating him” [Peer-leader of a sports’ group, Gwanda].
In one particular case, a peer-leader took a lot of time explaining to her social network member how the self-test is done only to realize later that she had not conducted the test correctly. This social network member was later given another kit to repeat the HIV self-testing process:
“There is someone who experienced that. I called her when she was coming from her home, I told her that I need to see her … I went with the kit to her home and explained to her various times. I would tell her to explain to me what I had told her but she would explain while missing some things. She didn’t understand many things... Afterwards she told me that she had understood and I told her that after using the kit, she should take it directly to the health worker. After a few days, I asked her that did you see the health worker after using the kit and she told me that aah … I used the kit but I got wrong results. She didn’t say anything else … I didn’t know if I could help her, for example, by taking her to counselor X to get another kit so that she could perform the test from there. Afterwards, she repeated the test when you [members of the study team] came back [for the follow-up visit] [Peer-leader of DREAMS trainees, Kasensero].
c)
Suggestions for improving the implementation of a peer-led, HIV self-testing intervention in a typical fishing community
We asked peer-leaders what they would do to improve the implementation of a peer-led, HIV self-testing intervention within a typical fishing community. In response, peer-leaders made a number of suggestions ranging from the need to allow for supervised HIV self-testing for illiterate members of the community; the need to follow-up social network members to check if they have used the kit; and the need to choose peer-leaders who are humble, approachable and who can keep secrets. The following sub-sections provide insights into what peer-leaders thought could help to improve the implementation of a peer-led, HIV self-testing intervention in a fishing community in the future.
i)
Allow for supervised, peer-led HIV self-testing, where appropriate
Peer-leaders indicated that some of their social network members were illiterate and could not accurately follow the HIV self-testing user instructions. Other peer-leaders reported that their members could not accurately estimate the 20 min needed to perform the self-test or that they needed emotional support from someone in case they tested positive. For that reason, some peer-leaders suggested a need to allow for supervised HIV self-testing in which a peer-leader would be physically present to support their members in performing the HIV self-test. When peer-leaders were asked how they dealt with their illiterate members, some of them reported that they actually helped them to complete the HIV self-testing process even if they (the peer-leaders) were not meant to do this, as intimated by a peer-leader of a footballers’ group:
“That same thing happened to me. I explained to my members that this is an HIV self-testing kit. You are the one supposed to test yourself and no one is supposed to help you. Three of my ten members said … we don’t know how to read time and we might make mistakes. I told them what to do but out of the three its one who accepted and tested himself. With the other two, I made a mistake but I helped them. The health workers told us that we aren’t supposed to help people test. They should test themselves and understand but they requested me and forced me to do it” [Peer-leader of a footballers’ group, Kyebe].
ii)
Need to follow-up social network members to ensure that they have used the kit
Peer-leaders suggested the need to follow-up their social network members after giving them kits to ensure that they have used them to test for HIV. This is because some of the social network members who test positive might fail to disclose their status to anyone, or if they got HIV treatment, they may fail to take their medicines. Following up the social network members who have taken the kits home could also help to support those who test HIV-positive to link to HIV care and/or continue with their medication as the following quotation illustrates:
“Follow up on people who test positive. Someone will go and get medicine for the first time and he/she experiences some side effects and says that I won’t go back” [Peer-leader of a talents’ group, Gwanda].
iii)
Choose peer-leaders who are humble, approachable and who can keep secrets
In order to improve the implementation of a peer-led HIV self-testing program in the future, any selected peer-leaders should be humble, easily approachable and be able to keep secrets. With those qualities, the social network members can easily trust them and also open up to them about anything. Having such people distributing kits will enhance the smooth distribution of kits in the community.
“Peer-leaders should be educated on how to handle people well. You can’t come from wherever and bump into people. You have to come and tell them that I have information in a humble way. You can call your friends who you play football with. After playing for 30 minutes, you can tell them that let’s use these 20 minutes to talk about this program. You can then talk about that program” [Peer-leader of a farmers’ group, Gwanda].