Introduction
Methods
Study Setting, Patient Selection, Inclusion, and Exclusion Criteria
Procedures
Results
Demographics
Characteristics | Women (n = 30) | Men (n = 20) |
---|---|---|
Mean age ± SD (years) | 30 ± 4 | 34 ± 6 |
Completed matric or above†
| 22 (73%) | 12 (60%) |
Employed | 19 (63%) | 15 (75%) |
Mean years since HIV diagnosis ± SD | 3 ± 2 | 3 ± 5 |
Currently on ART/ARVs | 21 (70%) | 17 (85%) |
HIV-negative (versus unknown status) partner‡
| 14 (46%) | 13 (65%) |
Disclosed HIV-status to partner* | 23 (79%) | 15 (78%) |
Pregnancy or partner pregnancy in the past year | 30 (100%) | 3 (16%) |
Pregnancy or partner pregnancy since HIV diagnosis | 22 (73%) | 2 (11%) |
On ART prior to pregnancy or partner pregnancy | 9/22 (40%) | 2/2 (100%) |
Pregnancies, including current (mean ± SD) | 2.1 ± 1.1 | – |
Live births (mean ± SD) | 1.1 ± 0.7 | – |
Currently living children (mean ± SD) | 0.9 ± 0.6 | 0.9 ± 1.0 |
Desire for child in future | 8 (27%) | 14 (70%) |
Overview
I. Reproductive Decision-Making
A. Reasons for Having Children
I think [it is important for a man to have children] because children are a gift from God. They leave a legacy of the family and they extend and expand your surname so that it won’t die when you die, your legacy won’t perish. [Man #13, 28 years old, partner HIV-negative]
It is important [to have children] nowadays because if you are an only child to your parents and their hope is in you, if you get sick—because most of the time we young people die—then my child will grow up and help my mother when she is sick. So I see it as important. When you do not have children and you are married you find that your husband says that you must give him children because he paid a lot of money so you need to also produce in order to pay. If you tell him that you do not want any children he will go look for someone else who will have kids for him. [Woman #27, 34 years old, partner HIV-status unknown]
B. Deterrents to Having Children
I want to be financially stable [before having a child], able to support myself and support the rest of the family. Another thing I am concerned about is that maybe she [partner] does not want to be HIV [infected]. I have never asked her if she is willing to take the risk of contracting HIV if we engage in sex. [Man #13, 28 years old, partner HIV-negative]
In the community the issue of having children is important. If you have one, like I do, you find people saying that if this one dies then it is the end, so it’s better if you have at least three.… I do things according to my plans and the way I think, I wouldn’t want to have four children when I am unemployed just because I want to build a name for myself [Man #12, 35 years old, partner HIV-status unknown]
Women expressed fears about the impact of pregnancy and childbirth on their health.As much as there are ARVs available and you know that you can still live, there is that element that you know that you are sick and there will come a time where you will leave your baby and you do not have relatives who will look after the child appropriately. [Woman #26, 22 years old, partner HIV-status unknown]
I am [HIV-] positive. If I keep on getting pregnant I might die myself. [Woman #13, 31 years old, partner HIV-negative]
C. Role of Men in Conception Decisions
At times he would pretend he was using the condom when he was not. I told him that we should stop thinking about having a baby because I am sick, but he hoped for a child. [Woman, #21, 33 years old, partner HIV-negative]
Male participants also described a desire to have children when their partner reportedly did not.He asked me to have his baby because he doesn’t have a child, but I told him that I’m not ready to have a baby yet … we used to fight a lot about that. [Woman #3, 25 years old, partner HIV-status unknown]
She said not now [to having children]. I wish to have more children because I feel that the two that I have are not enough. [Man #19, 30 years old, partner HIV-negative]
D. Pregnancy Planning
I would tell him [husband] over the phone that I am waiting patiently for him to score. One day … I bought a pregnancy test and I tested myself. God, two lines appeared… I went to the doctor who confirmed that I was pregnant. I kept the test I used. Even now it is still at home. [Woman #15, 34 years old, partner HIV-negative]
I did want to have a child but I had not really planned which year it would be, but I wanted one… I was the one who wanted a child and I’m the only one who knew that. When I told him [partner] that I was pregnant, he did not have a problem with that. I have never used any [contraception.] [Woman #18, 24 years old, partner HIV-negative]
‘Did you plan this pregnancy?’ No … I am happy because even my ultrasound is good, yah, a baby is a baby. [Woman #19, 33 years old, partner HIV-status unknown]
‘Did you plan this pregnancy?’ Not really. I kept asking myself where to from here, since I am going to be a mother, but now everything is just fine. I told myself that I’m pregnant and if the baby can come now, I will be fine. [Women #14, 23 years old, partner HIV-status unknown]
That was my wish [not to have more children]. That is why I dated a married man, because I knew he would agree to use condoms. [Woman #5, 28 years old, partner HIV-negative]
Use of contraception other than male condoms in this sample of pregnant or recently pregnant women was, unsurprisingly, low. Reasons for low use included fear of side effects, history of side effects, discontinuation of hormonal contraception for treatment of multi-drug-resistant tuberculosis, unplanned (including forced) sex, perceived personal, or partner infertility, or infrequent sexual intercourse.No, I was not happy at all [to be pregnant]. Maybe it would have made me happy if, when I told him about my pregnancy, he was happy. Instead, he said he didn’t want a baby and told me that [my pregnancy] was my own problem. [Woman #7, 31 years old, partner HIV-status unknown]
II. Horizontal Transmission Risk: Understandings and Behavior
It was hard for me to tell him that I was positive. But I was not hiding my ARVs. He asked what medication I was taking. I said I am sick, I have a spine problem, and he understood. I then told him that we will have to use condoms when we have sex. [Woman #6, 31 years old, partner status unknown]
Several participants did not disclose based on fear of partner response or beliefs about the partner’s positive status.When I found out I am HIV-positive, I was in a relationship with my current partner. Nothing changed because when I went for the test I told him and he said that when I come back with the results I should not tell him the outcome. I did not tell him, but I continued with him like before except we started using condoms consistently because I told him that the doctor said we should use condoms from that day onwards. [Woman #20, 31 years old, partner status unknown]
I failed [to disclose my status] because I thought that he would say I am the one committing adultery. [Woman #12, 29 years old, partner HIV-negative]
Among women who planned pregnancies after knowing their HIV diagnosis, one did not disclose HIV-status to her partner. This woman believed that her partner was HIV-positive (Woman #30, quoted above).No, I have never [told my partner my status] because I can see that he knows that he is positive but he is just keeping it from me. He takes immune boosters and drinks mixtures that are made for HIV-positive people. [Woman #30, 31 years old, partner status unknown]
I think it’s God’s will that she did not get the virus from me. [Man #14, 39 years old, partner HIV-negative]
He then asked me how it happens that he is negative and I am positive, and I told him about the window period. [Female #11, 34 years old, partner HIV-negative]
He didn’t have a problem [to use condoms] at the beginning, but as time went on he stopped using them saying if I am positive, he is also positive. He can’t be negative while I am positive: maybe the virus is hidden but it is there. [Female #13, 31 years old, partner HIV-negative]
Some women who planned pregnancy described risking horizontal transmission with her partner in order to conceive; in some cases, the decision to take the risk was made by the negative partner. None of the male participants reported planning a pregnancy with a partner after HIV diagnosis, thus we only report women’s perspectives on this issue.1Once a condom breaks, you ask yourself, ‘What’s the use? It has already broken and now she’s got it [HIV] … So, let’s continue without a condom.’ [Man #6, 31 years old, partner HIV-negative]
… he was the one who decided he wanted another child… I was afraid. I told him that what we are doing [unprotected sex] is not right because he might get infected. And if he goes back to test and is positive, he will blame me. He said if that is supposed to happen, then it will happen. [Woman #11, 34 years old, HIV-negative partner]
I do not want him to contract it [HIV] but he is a man and they can be very stubborn. He says what’s wrong if he dies because of this virus? All he wants is a child and it does not matter if he gets HIV. [Woman #21, 33 years old, HIV-negative partner]
III. Knowledge of Periconception Strategies to Reduce the Risk of Horizontal HIV Transmission
What we usually talk about is that her heart is broken because she still wants to have a child. But the question is how, since she does not have a child with me. Unfortunately, I do not have answers to her question. I know that it is difficult to have a child in our situation. I think it would be my responsibility to consult doctors who can to tell us what we should do. [Man #7, 40 years old, partner HIV-negative]
Two participants had heard of traditional healers offering safer conception strategies but neither participant had first-hand knowledge. A number of participants sought information from healthcare providers and the internet in order to learn about and, in some cases, carry-out safer conception strategies. This included delaying conception until the positive partner’s viral load was suppressed and home manual insemination (for male-uninfected couples: the man ejaculates into a condom or other receptacle, then semen is inserted into the vaginal canal via a syringe or reversed condom). Some participants mentioned microbicides and oral prophylaxis as potential strategies.If we had enough information about how we can have a child safely, we would have one by now. I hear people talk about it but it is better to hear from somebody who is knowledgeable. [Man #11, 33 years old, partner negative]
After finding out that my viral load was very low, even undetectable, he [husband] decided we should take a chance and see what is going to happen. He said that he has taken that decision, I am not forcing him to take it. Then we just took a chance. [Woman #4, 28 years old, partner HIV-negative]
A doctor gave us a [syringe] which we had to use after sex to withdraw sperm [from the condom to insert into the woman]. … We are both aware that I am positive and so we would use a condom all the time… and we received advice from the doctor on how to use the syringe so that he [partner] does not get infected. [Woman #25, 32 years old, partner HIV-negative]
When we discuss the topic of children, we question how we are going to have a child. I’m positive and she is negative, it impossible. But she went as far as the internet to check. She saw something about sperm washing on the internet. [Man #5, 30 years old, partner negative]
I heard about this thing…on the news. I do not know its name but it’s a gel substance. I don’t know whether it’s the negative or positive that takes this substance. [Male #6, 31 years old, partner HIV-negative]
IV. Motivation to Protect the Baby Results in Reduction in Risk Behavior
Since I got pregnant, we no longer have sex…He is trying to make sure my CD4 count goes up and the baby doesn’t get infected. [Woman #5, 31 years old, partner HIV-negative]
Yes, [he agreed to use a condom] for the sake of the baby. [Woman #7, 28 years old, partner HIV-status unknown]