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Table 2 Select community resident and distributor quotes on social position, HIV-related risks and HIV testing from focus group discussions and in-depth interviews across the life course

From: ‘Too old to test?’: A life course approach to HIV-related risk and self-testing among midlife-older adults in Malawi

Key themes # Participant quote Participant characteristics
Defining age and midlife-older adulthood
 Age as behaviour 1 If your behaviour is not good … even a child thinks you are also a child. While if a little child gives himself respect, some people also respect him as if he is older. Community resident, 35–49 years, urban, focus group discussion (FGD)
2 The one who is looked at as an old person, is the one who follows the advice that he has been given, because when an old person is told something he follows the rules. The one whom we consider as a young person, is the one who doesn’t follow the advice that people give him. Community resident, 35–49 years, urban, FGD
3 We know a young person [by] their behaviour … it’s like a prodigal life. They drink a lot, smoke chamba, fornication is becoming rampant in the young ones. Community resident, 35–49 years, urban, FGD
Social expectations and standing
 HIV is a ‘disease of youth’ 4 How could an elderly person like this be found with a disease like this? It should have happened to the youth because they are the ones who ‘run faster’ (are more active sexually). Community resident, 35–49 years, urban, in-depth interview (IDI)
5 [Older people] think there is no reason to go for testing because in their time there was no HIV. HIV is a disease for people who were born after the year 1985. They think the disease is not part of them as they were born and grew up before the disease was discovered. Community-based distributor (CBD), 35–49 years, urban, FGD
6 Most people think AIDS is a disease for the youth, because old people are the ones who give advice. If they are giving advice to the youth and then they should also contract the virus, it becomes surprising. It makes people ask a lot of questions. Community resident, 35–49 years, urban, FGD
7 When an old person is looking at a young person, he thinks that a young person has [HIV] in his body. But when a young person is looking at an old person he is 100% sure that this old person does not have any [HIV] in his body. Community resident, 35–49 years, urban, FGD
Risk perceptions in relation to modes of HIV transmission
 Infidelity and trust 8 No I don’t have concerns, even though I am not in marriage but I have a partner and I have trust in her. Community resident, < 35 years, rural, IDI
9 You can say this is my wife and we are loving each other without knowing that you are thinking differently. Community resident, 50+ years, rural, IDI
10 [Interviewer: You had any perception of risk of HIV then before found positive with self-testing?] Yes, because my husband had a relationship with a woman who was HIV positive and she was on ARVs … My husband doesn’t stop his immoral behaviour. Community resident, 35–49 years, rural, IDI
 Non-sexual modes of transmission 11 We explain to them that one can contract the virus through different ways. It might be that you helped a certain person, or maybe you used something sharp, and from nowhere you can easily contract the virus. Because of that, they say ‘I think that you are explaining well’ and you will find that they get tested. CBD, < 35 years, urban, FGD
12 … I always have fear with barbershops that cant we get HIV? I just think that because everyone use the same [shaving] machine. Community resident, 50+ years, rural, FGD
13 … I used bath soaps, so maybe through that I can have a concern [HIV risk]. Community resident, 50+ years, rural, FGD
Consequences of HIV testing and diagnosis in later life
 Social and self-stigma 14 If you go for HIV-testing people say you doubt yourself. They talk a lot saying there is something making you go for testing. They don’t look at it as if it’s just your decision, or it is because you listened to the counselling, or that you wish yourself a better future. They think that maybe you have been sleeping around or maybe you are getting sick. Community resident, 35–49 years, urban, FGD
15 Some older people ask us what will happen if they are found with the virus - will they receive the drugs right here at home or from the hospital? They say some people feel ashamed to go to the hospital and receive drugs, as there will be a queue for such things. Urban CBD, < 35 years, urban, FGD
16 If an old person has been found with the virus, people tend to wonder saying “aah how come?” because it’s like a young person is the one who is very active in sexual activities. So how has this old man contracted the virus? We look at those old people who contract HIV as if they lack wisdom. Community resident, 35–49 years, urban, FGD
 Fatalism 17 Some people say they are already dead when they test HIV positive, instead of start to receive ARVs. Community resident, 50+ years, rural, IDI
18 Some older people say ‘I have already grown up – what is remaining here is just dying. Why should I go to test? Even if they will mend me, what will that do for me?’ Community resident, 50+ years, rural, FGD
 Condom use and abstinence 19 Since that incident happened [both diagnosed with HIV], the community health worker came and gave us condoms. That’s what we are using now. We are using condoms, apart from that we usually having sex once per week or 2 weeks. Community resident, 35–49 years, rural, IDI
20 Yes, we use [condoms] … We will continue. As for this unborn baby, [I am protecting it through] the treatment I am receiving. Community resident, < 35 years, rural, IDI
Perceptions and experiences with HIV self-testing
 Ease of use and time saving 21 Yes, I would recommend because the procedure is simple. Community resident, < 35 years, rural, FGD
22 It was very simple to self-test, I just followed the instructions and managed to test myself …. I would recommend self-testing because we save time instead of going to HTC [HIV testing and counselling] we do it ourselves at home. When you think about time and cost, is better to use self-testing because you will do it while at home. Self-test and you don’t waste your time, while at HTC you need to travel and spend money for transport and you will be tested by the doctor. Community resident, < 35 years, rural, IDI
23 [Self-testing] at home - you can do that within 15 min while you are doing other things at home, while testing at a facility it can take you over an hour. Community resident, < 35 years, rural, IDI
24 Aah, I don’t see any problems. I think there are only benefits because some people are not comfortable to go to the health facility for testing. So it is easier for them to use this method and know their status … Well, [when testing HIV-positive with self-test], I just accepted and admitted it … If I live in denial and be anxious it won’t solve anything. I had to accept and follow the counselling. Community resident, < 35 years, rural, IDI
25 The test kit is a very good thing because you are able to read the results yourself instantly. I believed the [positive] results …. There is benefit because it [self-testing] will bring trust and love to each other. Community resident, 35–49 years, rural, IDI
 Support during self-testing 26 The counselling regarding the kit itself would be to highlight how the apparatus works or how we can use it. After knowing how it works, then we would be able to use it. The only assistance I would want is advice regarding how to properly use the kit. Community resident, 35–49 years, rural, IDI
27 [Without guidance and supervision] it [would] be difficult because you don’t even know how to open the pack. For other people they can be easily to understand, while others it may be difficult for them, so to others might bring confusion. Community resident, 50+ years, rural, FGD
28 Old people prefer different things. Those who have reached 45 to 70 years are the ones who test in our presence so that we should help them in reading the results, and so you can explain the instructions to them properly. But people who are 28 to 40 years like to test by themselves because they know that may be their behaviour was not right at a certain time, and they know it wouldn’t be a problem to go to the hospital themselves. CBD, 35–49 years, urban, FGD
Partner self-testing experiences and perspectives
 Family and couples counselling 29 The best counselling should be provided as a couple, because they will remind each other if one has forgotten. Community resident, 50+ years, rural, IDI
30 Counselling given to a family as a whole is good because it gives an opportunity for everyone to hear for himself … Especially [for] me and my wife Community resident, 35–49 years, rural, IDI
 Give kit to partner 31 Yes, I would be very glad because me and my wife are one. So if that could be the arrangement I believe she would be very glad to, because from the very beginning she was the one who was encouraging me to go for blood testing. With this kit, my wife would also be able to test herself. Community resident, 35–49 years, rural, IDI
32 I found myself to be HIV positive together with my husband. [Before] we had plans to go for testing, so we took self-testing together as an advantage to us, [and] we accepted the results … There is benefit because it [self-testing] will bring trust and love to each other. Community resident, 35–49 years, rural, IDI
Preferences for future distribution of self-test kits
 Expectations of CBDs 33 Old people are stubborn to hear any advice from children. They don’t believe these children. They look at themselves as old people who have more wisdom. So, if a young counsellor goes to such a person, will they listen to him? Community resident, 35–49 years, urban, FGD
34 [Interviewer: Who should distribute self-test kits in terms of age and sex?] Anyone, as long as the person is trust worthy. Community resident, 35–49 years, urban, IDI
35 … Maybe your child will be conducting a test on me. I am an old person. Community resident, 50+ years, urban, FGD