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Table 2 key themes in the interviews and focus group discussions

From: Community acceptability of dolutegravir-based HIV treatment in women: a qualitative study in South Africa and Uganda

Themes Illustrative quotes
Awareness and knowledge [1]I have heard about it before …. [but] I don’t have a lot of information … they need to explain to us the details. … what kind of pill it is, how it works and what it does to pregnant women” (South Africa, Women’s IDI, P191)
[2]They should organise workshops in the community to teach us without discriminating that this one has the virus this one doesn’t have” (Uganda, Women’s IDI, P205)
Attitude towards dolutegravir-based treatment [1] “dolutegravir is one pill so I am sure you will be able to take it once daily, while the AZTs were two and you were supposed to use it every 4 h. I like it [dolutegravir] because of that” (South Africa, Women’s IDI, P101).
[2] “People lose hope when they are infected with this disease. They say you are dead; you’re finished when you have HIV. But this medicine gives us hope …. It will remove that thought that the tablets are unbearable, that you have HIV... You take it and nobody will know that you have taken it. Nobody will know you are HIV positive.” (Uganda, Women’s FGD 297, P6).
[3]I take the medicine to help the baby and me, and they say it can affect the baby. I am worried. The old one [efavirenz] affects us a lot [during pregnancy] but I will use it because it doesn’t have that problem [NTDs]. I don’t want anything to affect my baby.” (Uganda, Women’s IDI, P204)
[4]I would not allow it …. unless we had a child before we became HIV positive. If we don’t have a child, I would not allow it because I still want to have a child. … It doesn’t matter when she uses it, it can still affect the baby. It is better she continues to use the old one [efavirenz].” (South Africa, Men’s FGD 198, P9)
[5] “They explained to me everything [including the risks of NTD], but I said it is ok because the baby was already in danger. I did not book early, and they said the baby may be infected. But with dolutegravir there is a chance …. That is why I took it … to protect the baby ….” (South Africa, Women’s IDI, P103).
Concerns about side effects [1]It is good, because it gives you appetite, you don’t get dizzy. You can still move when you swallow it. But the other ones we had before when you swallow them you have to first stay quiet somewhere. The only problem was that at the beginning I could not sleep well, but it is ok” (Uganda, Women’s IDI, P295)
[2]It changed my ways especially my female hormones. When I am with a man, I don’t feel it. Sometimes it takes me back to my periods and I get them again …” (Uganda, Women’s IDI, P208)
[3] “Yes [I will accept dolutegravir], as long as it has no negative effect, weakening my body while pregnant, causing me not to eat, remember the child needs to eat.” (Uganda, Women’s IDI, P201)
[4]They should do proper research this time … they should make sure these side effects we are afraid of will not be there ….” (South Africa, Women’s FGD 193, P5)
[5] “I will not allow it because she would be taking a pill whose side effects, we don’t know …. they should do more research before we allow our wives to use it” (South Africa, Men’s FGD 198, P2)
[6]I will not like that because I am used to this pill and I don’t know how the other pill will treat me. It took me so long to get use to this one [efavirenz-based regimen].” (South Africa, Women’s IDI, P 111)
[7]I personally, I would not want to use it now. Because I am afraid that they will make me fat and leave me with no butts and skinny legs.... I would want to see other people use it first because, what if it does something that is irreversible?” (South Africa, Women’s FGD 192, P4).
Autonomy and choice [1] “If you force me to use that medicine and I get any problem it means I will put the blame on you so it would be better if we decide for ourselves …. I will feel less pain If I decided to use it and caused problems ….” (Uganda, Women’s FGD 291, P3).
[2] Deciding on their own would be good …. … [But] if one is still giving birth, they should not be given that choice... instead of deciding for themselves, you [health workers] should make the decision for them.” (South Africa, Men’s FGD 199, P6)
[3] “I may decide on my own but I have made the wrong decision and yet it will destroy my health. So, it is good to first consult someone who is better than you … the health workers” (Uganda, Women’s IDI, P208)
[4] “Our lives are in your hands, basawo [health workers]. You know better the side effects. It’s hard for us ordinary people to decide on this …. If you say it is not good for us pregnant women, we will respect that because we know you will make the right decision for us.” (Uganda, Women’s FGD 292, P5)
[5] “the most important thing is educating us more about this drug [dolutegravir]. It’s important to understand about that drug to avoid excuses that the doctor did not educate me that is why I made the wrong decision. If I understand I will make the right decision.” (Uganda, Women’s IDI, P201)
[6] “They should first explain it to us, how it will work and the risks. … they need to explain it first and then ask us to decide. We are capable if they help us.” (South Africa, Women’s IDI, P191)
Contraception in dolutegravir-based treatment [1] “Family planning is not a problem for me. I will do it so I can also use the new drug. … family planning will help us not to have infected children” (South Africa, Women’s IDI, P199)
[2] If you give birth every year and you are HIV+, it reduces your health. … it reduces your life span. You need to space the children and go on family planning ….” (Uganda, Women’s IDI, P207)
[3] “It must be given to women who feel like they have had enough children; not the young ones because they still want to get married and have family. … men want children and if she can’t provide that there will be problems ….” (South Africa, Women’s IDI, P104)
[4] “They should give us one that you can easily change so that if you change your mind and you want to have children you can stop.” (South Africa, women’s IDI, P207)
[5]I feel like the people that are not using contraception, especially the younger ones, will be left behind. It means that if they want to have children, they will not take it.” (South Africa, women’s IDI, P101).
[6] “There is going to be problem because sometimes you find one who is pregnant, and she still goes for family planning. Sometimes the contraceptive will fail. … sometimes it is not the drug, it’s the woman, the thing will expire but she will not go for new one. … sometimes it is the clinic, they keep postponing...” (Uganda, Women’s FGD 291, P7)
Preferred ARV features [1]What I ask [about dolutegravir] is that they should reduce the tablet and confuse it a bit with everyday drugs so that when someone looks at it they do not know it, they don’t notice that you are infected. … it should be a small tablet like Panadol, something that is not different ….” (Uganda, Women’s FGD 293, P7)
[2] “I don’t like it, it makes a lot of noise, it is noisy. It is hard to take it in public. If the new one [dolutegravir] can be made so that when you put it in your bag, it doesn’t make noise.” (South Africa, Women’s IDI, P113)
[3] “I think it [dolutegravir] should be similar to the injection you get from the family planning clinic; you get once monthly. … imagine if you have not told your partner, he will find out if you have three drugs every day” (South Africa, Women’s FGD 194, P2)
Community engagement [1]We need to agree … Me and the mother of the baby …. And see if this thing will not … because there is the thing of one being allergic or not allergic … will this thing be able to protect until … we can rebuild our family (South Africa, Men’s FGD198, P11).