Table 3.
Interview excerpts illustrating de-stabilizing experiences as barriers to adherence
Category name | Elaboration | Illustrative interview excerpts |
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5. De-stabilizing experience: mobility | Mobility → difficulty establishing oneself in a new location | “I separated with the man that I was staying with.... I had gone to my mother’s place after my husband’s place....[He] denied the pregnancy and said I was lying to him. When I went to my mother’s village, I found my mother had got married elsewhere after separating with my father. My grandmother could not manage to care for me so it was hard for me. I suffered for some time.” Woman, Uganda, Age 24 |
6. De-stabilizing experience: loss | Loss of relationship with baby’s father → impoverishment | “Since I got pregnant, the relationship is not the same. I mean he is not coming to my house anymore... I told him I wanted to tell him something, it seemed he already knows what I am talking about. He did not come; he did not care. I can see that he is running away from this. I told him I needed to buy baby essentials to come out of hospital. The cash he gave me was not enough to cover all costs. He has not even seen the child.” Woman, S. Africa, Age 29 “Before I was pregnant I would provide everything by myself. When I gave birth. I was not able to provide anything for myself. He [baby’s father] has not brought anything, even soap. If I do not have food I have to go to someone’s field and dig and I get money and then I come and buy maize flour. He has never sent me even 100 shillings to buy some oil.” Woman, Uganda, Age 23 |
7. De-Stabilizing experience: pregnancy | Pregnancy → malaise, physical symptoms, depressed mood | “I realized that I missed having my menstrual periods on the days I expected to have them. I also started to feel bad and got changes in my life. I started vomiting, getting sick and did not feel fine. ...I did not want to eat anything. I also felt hatred for my life; I did not want to see any one. I lost all my peace.” Woman, Uganda, Age 21 |
8. De-stabilizing experiences as barriers to adherence | Traveling away from home → missed doses | “One day I had travelled with my cousins to visit my aunts. I left [the pills home] because we were not sure how long we were going to stay there. So it happened that we were still there by the time I should have been taking them. ... And again when we were at the villages (Eastern Cape). It gets really busy there in December, so it got busy. It would come to the time of taking tablets and I am not in the house.” Woman, S. Africa, Age 27 |
Mobility → difficulty refilling prescriptions | “I move from one place to another and at times you find that you started drugs long ago, and you have to lie and then you end up testing as a new client. You test as a new person and when you say you are just starting they give you small drugs thinking you are just starting yet you have already reached on the level of taking the big ones. I even went some other place where they refused to give me the drugs. They told me to go back to where I was from and get a transfer letter. When they told me that, I also decided to leave all that and I stopped taking the drugs.” Woman, Uganda, Age 24 “You [can’t] just go to any health facility. You must have a specific center where they monitor you. Now for me at times I may be in [name of district]. You might even go to South Africa for a course. You have to come here first unless you are spending there a short period of time. You have to come here and they give you drugs. If you are to take long they cannot give you all those drugs. It means you have to travel from that place and come here which is a challenge.” Male, Uganda, Age 29 |
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Pregnancy—impoverishment—food shortage → missed doses | “When I was pregnant it would at times hinder me from going to work. [Then] I would fail to get money to buy things - like porridge - to swallow the drugs with, because I cannot use water. When I didn’t work and get money, I would say, ‘no, let me miss this tablet and not swallow it.’” Woman, Uganda, Age 23 “That used to happen to me when I was pregnant. I knew that if I swallow the drugs when I had not eaten I would not get up, because it would make me dizzy, so I would not swallow. But now that I am not pregnant it is very rare for me to fail to get what to eat.” Woman, Uganda, Age 20 “At times I would be lacking something to eat. When you swallow this medicine without eating it can kill you; it has a lot of power. So when I would see that I do not have food I would say, ‘today I will not swallow it.’” Woman, Uganda, Age 24 |
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Pregnancy—malaise and physical symptoms → missed doses | “It was not easy for me because I became sick and they started me on drugs [ART], which treated me badly. I then stopped the drugs for some time because I knew that the drugs were the ones that had caused me poor health. I did not know that the pregnancy could also make me feel bad. When they took me to the counselor she told me, ‘Continue taking your drugs; the drugs do not have a problem. Since you are pregnant it may be the pregnancy is causing you bad feeling.’” Woman, Uganda, Age 18 |
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Pregnancy—physical assault—mobility—increased poverty—food shortage → missed doses | “When I left that man’s place and went to my mother’s village... she had got married elsewhere, so she was not there. So when I reached there, the situation was difficult. When I would get back from digging [to earn income during the day], I would have to start looking for something to prepare. The food was not good, so I would say, ‘I am not going to swallow these drugs for them to kill me.’ I would only swallow if I had something to eat. That’s what used to make me fail to swallow.” Woman, Uganda, Age 24 |