Table 2.
Narrative quotes of participants’ experiences in being part of an ongoing HIV trial during a pandemic
| Subcategory | Narrative quotes |
| Difficulty accessing treatment facilities | I got my results on March 2, 2020 and started taking HIV medication and was told to return for follow-up on April 6, 2020. I selected that hospital because it is close to my workplace but since we are not working now, I am at home and it is too far from the hospital. I have therefore decided to wait until we are released from this lockdown, to go for the medication. (Participant 29, district 2) |
| Interruptions in HIV treatment schedule | I haven’t yet told my wife my HIV status because I wasn’t expecting to be tested positive. I have been keeping the ARVs at the office and taking them each morning as soon as I report to work. When companies were closed after the president’s speech, I was one of those who was sent on temporary and indefinite unpaid leave. I am now at home and have no way of explaining why I am taking this daily medication. I just threw the tablets away and when I resume my work, I will start afresh. (Participant 01, district 1) |
| Fear of coinfection with COVID-19 | People have been saying that men and people who have other illnesses are more likely to get infected with COVID-19. Now that I am HIV positive, am I not more likely to get infected? Is HIV considered a pre-existing condition? Are people taking anti-retroviral treatment (ART) more at risk or is it better to continue the treatment? (Participant 05, district 2) |
| Incorrect information about COVID-19 and HIV | Some of our colleagues told us that people who were on ART would get COVID-19 much faster than those who were HIV positive but not on ART. That all one needs to do is eat plenty of fruits and vegetables during this time. When this happened, I stopped taking the medicine for one week. With this lockdown, we are mostly getting information from our friends, it is very unfortunate that many of us stopped taking medicine based on fake information. (Participant 07, district 1) My friends told me that only people who have underlying conditions like Diabetes [Diabetes Mellitus], pressure [Hypertension] or HIV can get COVID-19. During the wellness day, I tested, and all my results were negative. That means, I am safe. So why do I need to keep wearing a mask or social distancing or using hand sanitizer? (Participant 04, district 2) |
| Unforeseen effects of peer information on ART adherence | About a month ago, I was talking to some friends and they told me that there was a new drug for COVID-19. Apparently, this anti-viral drug is like the drugs we take for HIV. Although I did not tell them that I have HIV, I decided to take my drugs faithfully. I hope that this will lower my chance of getting the disease. (Participant 07, district 1) |
| Difficulty in transferring HIV care to new facilities | The lockdown from the government came so suddenly and we rushed to the village. I visited the health centre near my home for condoms and to refill my medicine [ART] for the next month, I was surprised to learn that I cannot just get medication from any hospital. They told me to go back to the place where I usually get my medication. I am now trying to get in touch with the former hospital to see if they can inform this health centre to allow me to pick some drugs. (Participant 16, district 2) |
| Limited HIV treatment support at health facilities | I keep forgetting to take the tablets because I am not used to taking medicine every day. I have also been struggling with some pain in my stomach since I started taking the medications. There are also some changes in my skin, I developed some swellings on my arms, and I needed to show them to my counsellor, but I cannot access the hospital. She asked me to take some pictures and send them to her on the phone, but I do not have a smartphone. I can’t cope with this anymore, I need support. (Participant 20, district 1) |
| Need for PrEP initiation support | My results were negative, but we discussed with the counsellor about starting treatment because of some reasons [PrEP]. I went to the hospital and I received the HIV drugs, but I have not yet started taking them. People told me that there are many side effects, and I do not want to have problems when I am on my own at home. I think I will wait to start treatment until I can easily see the counsellor or the doctor when they open public transport again. (Participant 05, district 1) |
| Transport difficulties | I was told to return for my follow-up visit on March 28, unfortunately by then we were in a lockdown so I couldn’t go to the facility because of the stay-at-home order. About a week later, I was not feeling well and decided to go to the facility to see the counsellor. I started walking from my house at 7:00am and finally got to the hospital at about 11am. After seeing the doctor, it was 2pm and I could not get transport back home. Unfortunately, if I decided to walk, I would have reached home past curfew hours. I therefore decided to stay at the hospital for the night with no beddings since I had not prepared for an overnight visit. The next morning, I walked home again and by the time I got home, I was feeling unwell again and sore all over. After that experience, there was no way I could go to the hospital again. (Participant 1, district 2) Honestly, it is such a hustle to come all the way to the hospital, I think I can give you all the information over the phone. I told you that my self-test was negative, therefore there is no need to come in person. The line at the Resident District Commissioner’s office for a travel permit is so long. It is not worth it. (Participant 20, district 1) |
| Fear of infection with COVID-19 | I am sorry that I did not come for the follow up visit, but I am worried about the danger of leaving my house. My family and I have been at home the entire month and my wife said that if I come back home then I need to self-isolate for 14 days. If I take that risk and come, then you must provide a substantial allowance for putting myself and my family at risk. I also figured that since I am HIV negative, there is really no need for me to come for any further check-up. (Participant 20, district 1) |
| Limited post-test psychosocial support | Just a few weeks ago, I took a test, and I was told that I am HIV positive. I still cannot believe it. The counsellor told me that I need to start on treatment [ART] immediately but I still do not believe it. I had started talking with the counsellor who asked us to come back after one month and I have started accepting my fate. However, now that I cannot see her, I feel like I have gone back to a bad state, like how I was when I had just received my results. She calls me regularly, but the network is so poor, and it is impossible to talk about so many things because we stay in a small place with many people now that we are all in the lock-down. I am waiting for this to end then I go back to the hospital for further confirmation. I hope the person who did the first test made a mistake. (Participant 15, district 2) |
*PrEP Pre-exposure prophylaxis