Respondents’ socio-demographic characteristics
The total number of women who participated in the FGDs was 121, of whom 72 (61 %) were pregnant (married) while the rest were of reproductive age. Most of the participants fell into the age range of 20–38 years. They represented different ethnic groups; all of them were Muslims and spoke Arabic. Most of them had basic formal education and were housewives.
Knowledge about MTCT of HIV
Most of the women knew about the sexual transmission of HIV, but few indicated prior knowledge of the MTCT of HIV. Those who mentioned MTCT indicated that it could occur during pregnancy and via breastfeeding. No one indicated that MTCT might occur during labor. Misconceptions about transmission existed; for example, some participants believed that HIV could be transmitted by kissing, brushing teeth, communicating with people living with HIV/AIDS and mosquitoes. The majority mentioned being in a committed marriage/relationship and not having sex outside of marriage in order to prevent themselves from being infected with HIV. Interestingly, most of the women said the practice of sex outside marriage applied mainly to men; for example, a 32-year-old pregnant woman from Khartoum South said, “I am sitting inside my house, where I could get HIV, due to my husband sleeping around.”
Perceived severity of HIV
The majority of the women indicated that HIV/AIDS is dangerous for women and has psychological, social and economic implications, such as depression, isolation and divorce. In contrast, a few participants indicated that it is not serious if the patient is enrolled in treatment and takes medication. For children, the consequences were perceived as being disastrous. Most of the women indicated consequences such as the death of the child either in utero or post-partum and the possibility of the child being born with disabilities. Some mentioned that the child would face stigma and be unable to complete his/her studies. “If a child was born as HIV positive he will die very soon,” said a 37-year-old woman in the Haj Yousif area. “And if he lived he will be expelled from the school,” added another 29-year-old woman in the same group.
Perceived susceptibility of HIV
Most of the women said they were susceptible to HIV/AIDS due to Caesarean section, blood transfusion, the use of sharp items that might be contaminated or husband infidelity. “We are sitting inside our houses and we don’t know what will happen to us” (a 34-year-old woman in Khartoum South).
On the other hand, a few women indicated a low probability of HIV infection because they were not thinking about HIV and thereby not expecting it. They did not feel at risk of getting HIV. When it came to children, most of the women acknowledged a high probability of their children being infected by HIV and associated this with sexual abuse or rape of children and playing with sharp, contaminated items. Only a few participants linked susceptibility to the mother being infected with HIV and AIDS.
“If a mother of a child is seeking sex outside marriage, her child will get infected by HIV and this is God’s punishment, and she deserves it” (A 33-year-old pregnant woman in the Haj Yousif area).
Perceived importance of HIV testing during pregnancy
Almost half of the women indicated that the HIV test is useful because it informs people whether they need to take medication, it can save the child and it gives them the opportunity to make informed decisions regarding labor and breastfeeding. It also eliminates doubts and suspicion (since some women do not trust their husbands). On the other hand, about half of the participants indicated that an HIV test is not useful because it does not have any added value: the women saw it as an additional burden of anxiety and worry.
“It is not useful, I’m okay and I don’t need this extra burden on my shoulders” (A 27-year-old woman in Bahri, Khartoum North).
“If a woman knows that she hasn’t done anything wrong, then why should she go and get tested? She is not in need of troubles” (A 35-year-old woman in Dikhinat, Khartoum South).
“If someone (female) trusts herself and she never did anything wrong, why would she go?” (A 28-year-old pregnant woman in Omdurman).
When asked about the usefulness of HIV testing for the child, most of the women reacted positively. In contrast, some women indicated that an HIV test is not useful for the child and were not able to recognize the risk of MTCT.
Oddly, when specifically asked about the advantages of HIV testing during pregnancy, the majority of the participants did not see any. However, some of the women mentioned advantages such as knowing their status because their husbands were not trustworthy, safeguarding the child, learning how to remain HIV-free if they tested negative and protecting the family. Some added that if they got tested, they would be relieved. One woman, a 32-year-old from Haj Yousif, said; “so I can have an abortion and not deliver a sick child.” Another woman, 28 years old, said, “So I know what my status is.”
Fear, tension, expecting non-confidentiality of test results and stigma were the main disadvantages perceived by most of the women. There was fear concerning the surrounding community, as they may suspect women who go for an HIV test to be found positive. Some women illustrated the concept of fatalism and said there are no benefits of going for a test because the disease is not curable, to which they added that they did not trust health care providers.
“Every now and then we hear about someone who has received a laboratory result that is someone else’s” (A 35-year-old pregnant woman in Omdurman).
Access and influence of other people on decision to test for HIV
Most of the women mentioned the doctor as the most influential person regarding the decision to test, followed by the pregnant woman herself, her husband, her parents and her elder brother. Mothers-in-law and friends also influenced decisions related to HIV testing. In general, they said that if the doctor requests a test, they will do it. Involvement of husbands was also perceived as positive. However, most of the women claimed that no one makes decisions on their behalf. “Hey, I am the only one who decides on this, no one can force me” (A 27-year-old pregnant woman in Khartoum South).
For factors affecting the access and acceptance of HIV testing during pregnancy, the majority of the women mentioned health-facility-based factors, including the distance to the testing center, the duration of the test, non-confidential behavior and the HIV test being made routine and compulsory. Non-health-facility factors included involvement of husbands and awareness of the benefits of the test, which were mentioned by some of the women.
Perceived norm-violating behavior and stigma
According to the majority of women, a mother is not responsible for becoming infected with HIV, and if she is infected, that means she got it from her husband. On the other hand, some indicated that a woman and her husband have joint responsibility. “As the husband sleeps around, the wife does too” (A 36-year-old woman in Khartoum North).
However, a few women indicated that a mother is responsible if she behaves in a way that violates norms, like having sex outside her marriage.
“The wife whose husband is working abroad and who hasn’t managed to abstain from sex might get infected, and thereby pass it to the child” (A 28-year-old woman in the Haj Yusuf area).
Some women indicated that in Sudan, HIV-positive persons are perceived to be bad persons who are guilty and have committed sins. People tend to forget about other modes of transmission besides sexual transmission and are inclined to attribute infection to the person’s own behavior. This blaming seems to result in stigmatization. Almost all women stated that children are not responsible for getting HIV because they are new to this world and do not choose their parents. When we asked about behavior related to becoming infected with HIV, most women mentioned illegal sex, meaning sex outside marriage.
The answers to the question of whether an HIV-positive person should be allowed to work in a public place were twofold. While half of the participants said “Yes” while hinting that the HIV-positive person must not have direct contact with other people, the other half said “No, s/he must not be allowed to work at all, because s/he will infect others.” “I can’t buy food from someone who is infected with HIV/AIDS,” said one 37-year-old woman in Khartoum North.
In terms of disclosure, the majority of women stated that an HIV-positive person should not let others know his/her status, because s/he will get stigmatized (e.g., s/he could lose his/her job and be forced to leave the family home). Even those who supported the disclosure of HIV status qualified their statements by saying that, in order for others to protect themselves, they should not have contact with an infected person. Very few participants said they would inform relatives who could help them.