Knowledge of health benefits.

Women in Malawi and Uganda understood that following the PMTCT guidelines (i.e., taking ART daily and exclusively breastfeeding until six months) was beneficial for their own health and that of their children. Two women explained:

“The benefit is that your child grows stronger and healthier. You might have the infection, but your child will not get it from you. And when the child grows, he feels proud that you cared for him.”—Malawian PMTCT Woman #2

“I have good health and I look after my children…This program is life…[by stopping participation] you are looking for death.”—Ugandan PMTCT Woman #24

Not only knowledge but also experience of the health benefits encourages women to visit the clinic and follow the guidelines. According to a health worker in Uganda (#78), “The fact that HIV-positive women can have HIV-negative babies encourages women to participate.”

Maintaining maternal and child health is important because motherhood and caring for the family are key gender roles assigned to women. A healthy child is seen as a sign of a good mother. Women need to stay healthy themselves so that they can continue to be caregivers. Thus, PMTCT participation reinforces their gender roles. A few respondents mentioned that the health benefits for the child are also benefits for the mother, because traditional gender norms dictate that mothers are responsible for child care, and it is easier for them to care for a child who is not ill. An LTFU woman in Malawi (#39) explained, “Women benefit more because of the gender roles assigned to women. Because everything that happens [to the children] is the responsibility of women.”

Social support.

Both PMTCT women and LTFU women described the types of social support they received and the importance of support in encouraging PMTCT participation. Nearly all the PMTCT women in both countries and about half the LTFU women in Uganda and two-thirds in Malawi said that they had family members, friends, health workers, or other HIV-positive women at the clinic who supported their participation in PMTCT. Here are some examples:

“He [my husband] reminds me to take my medication and to go to the clinic on time.”—Malawian PMTCT Woman #1

“The health workers continue encouraging you to adhere to treatment and advise you on how to live positively, and they share with you some important information that you may not know…It gives me pleasure and comfort when I sit with my health workers and chat.”—Ugandan PMTCT Woman #5

Women described social support as expressions of empathy, tangible aid, or advice and suggestions. They felt that social support was an important factor in encouraging them to go to the clinic, take their medication regularly, and not lose hope in their situation. The most common forms of support, usually from husbands/partners, were money for transport to the clinic and reminders to take ART.

Self-efficacy.

Self-efficacy is defined as belief in one’s ability to engage in certain behaviors and to exert control over one’s own motivation and social environment [27]. Many of the PMTCT women in Malawi and Uganda described high levels of self-efficacy and they were motivated by the health and longevity benefits of participation in the program. Here are two examples:

“The feeling or the will to stay healthy is the one which enables me to participate in this program.”—Malawian PMTCT Woman #2

“I keep reminding myself to take the drugs because I have nobody to remind me. I remind myself because it is my life.”—Ugandan PMTCT Woman #14

Some women with high levels of self-efficacy said that they might not be able to participate in the program without financial or other support from their husbands or family members.

Fear of HIV disclosure.

All types of respondents in both countries said that fear of disclosure was a major factor in women’s decision to stop PMTCT participation and in their experiences with PMTCT services. The current operational setup of Option B+, whereby women are tested for HIV during their first antenatal care visit, places the burden on the woman to disclose her status. In Malawi and Uganda, very few husbands accompany their wives to antenatal care or PMTCT visits. In most cases, the wife learns her status alone and then must decide whether, when, and to whom to disclose. If she discloses and her family is unaccepting, it is hard for her to stay in the program. Likewise, if she does not disclose her status, she does not get the support she needs to participate in the program. This is a no-win situation for some women.

Women especially fear disclosing to their husbands, because they are afraid they will be blamed for bringing HIV into the relationship. For example, an FGD participant in Uganda (#89) explained, “A woman finds it difficult to disclose to her husband because he can yell at her, talk to her rudely, [saying] that she is the one who gave him HIV.” In addition, most Malawian and Ugandan women are economically dependent on their husbands and afraid that they will be abandoned if their husbands find out they are HIV-positive. Wife and mother are their most important roles as women, and an HIV diagnosis threatens those roles with the risk of separation or divorce. For example, a health worker (#65) in Malawi explained, “It’s the men who are breadwinners, so [women] are afraid to tell them their status, because they fear being chased from the house or that their husband would leave them for another woman.”

Respondents in both countries described discordant status within a couple as a major problem for women but not for men. A health worker in Uganda (#73) stated, “If there is discordance and [the] woman is positive, then she is in trouble [from the husband], but if he is positive, then he may keep it a secret and continue his life.” Anticipation of a husband’s reaction, together with the belief that he is HIV-negative, contributes to women’s fear of disclosure.

Various types of respondents described the difficulties that women who decide not to disclose their HIV status face in staying in the PMTCT program. It is hard for them to take their ART daily without having others find out, and problematic for them to go to the clinic regularly to collect more ART. Here are some illustrative quotations:

“They [women who have not disclosed] are afraid of their husbands or the ones they are staying with. It becomes a challenge to take their medication, because they are afraid that they may get caught.”—Malawian Health Worker #71

“The fact that he [my husband] doesn’t know that I am HIV-positive is what stops me from participating in the PMTCT program.”—Ugandan LTFU Woman #49

The design of service provision at most of the health facilities made many women in this study worry about inadvertent disclosure to others in the community. This could occur because women in PMTCT are asked to go to a certain part of the facility or because the PMTCT clinic is on a specific day. The women might see people they know, and those people might figure out that they are HIV-positive. In other cases, a woman’s status may be disclosed through lack of privacy at the clinic or when health workers call out patients’ names in a public space. Two LTFU women explained:

“We should be attended to inside the clinic because we would like to keep our HIV status secret.”—Ugandan LTFU Woman #47

“I have always wanted to continue with the treatment, but I don’t like the long queues and the arrangement itself, whereby they give you one date for receiving ART and you are put in a separate queue from other patients with general illnesses. If it were one queue, then it would be much better, rather than calling out names of people going to receive ART. That is a burden to me.”—Malawian LTFU Woman #53

Despite all the issues related to HIV disclosure, many women in this study were able to disclose to someone close to them. According to the health workers and women in our study, women are advised to disclose to a relative or a close friend in case anything happens and they need someone to go to the clinic to collect ART. Women themselves know to whom they feel comfortable disclosing. A health worker in Malawi (#68) explained, “Everyone knows who can be trusted with such issues without humiliating them about their status.” All the PMTCT and some of the LTFU women had disclosed their status to at least one person. However, a third of LTFU women in Malawi and half of LTFU women in Uganda either had not disclosed to their husbands or had disclosed to no one. Of the PMTCT women and LTFU women who had disclosed to one or a few others, most had done so reluctantly, because they feared being stigmatized and gossiped about.

Fear of HIV stigma.

Many respondents in both countries described the interrelationship of HIV disclosure and stigma. Women who were worried about stigma were also worried about disclosure, and some respondents described the stigma that still exists in their families and communities. Women spoke of hurtful, fatalistic attitudes toward HIV-positive people, and how stigmatizing gossip harmed them. A PMTCT participant in Uganda (#6) explained, “You find people busy talking about you and you also find yourself having low self-esteem.” Stigma in communities and health facilities also contributed to women dropping out of PMTCT. According to a health worker in Malawi (#75), “When they [women] face stigma in the communities, they find it hard to come to the hospital. And even here at the hospital, if we show that we don’t want to help them because of their status, then they feel the stigma and just decide to drop out.”

Respondents generally believed that women face more stigma than men. HIV stigma in our sample was related, in part, to community perceptions of HIV-positive women. Some respondents in both countries talked about people who assumed that women with HIV were promiscuous, prostitutes, or “already dead,” and therefore could not fulfill their role as good and faithful wives, as prescribed by local gender norms. For example:

“If a woman is HIV-positive, people think that she was a prostitute…and then these [women] are discriminated…when they are known to be on ART. As such, women are ashamed to participate in PMTCT or HIV testing, for fear of being shamed.”—Malawian FGD #97

“Of course women are more stigmatized than men. Because we have this mentality that it is okay for [men] to do whatever they want, like they can have many women and it is okay. But if you are a woman and you are a discordant woman, your husband is negative and you are positive, the whole village will think that you are a slut or something like that. And if it’s the other way round, and it’s the man who is HIV-positive and you are not, they will actually be telling you, please support your husband, take care of him, make sure this and that, but if you are a woman, most probably they will throw you out of the house. It affects women more than it would men.”—Ugandan Stakeholder #84

Respondents described inequality in the stigmatization of women and men. Women in both countries had very similar perceptions about why HIV-positive women are more stigmatized than men. For example, a Ugandan LTFU woman (#37) said, “They [community members] can’t gossip about a man the way they gossip about a woman. They don’t despise men with HIV the way they despise women with HIV. They fear men.”

Despite these perceptions, some women, especially some of those participating in PMTCT, did not experience stigma, and other respondents thought that it was less common than in earlier times. A PMTCT woman in Uganda (#25) said, “Currently, there are so many people who are HIV-positive, so we no longer have people who stigmatize others because they are HIV-positive.” Several respondents believed that there were no differences in how HIV-positive men and women were viewed in the community. A few thought that women simply reacted differently to stigma and gossip than men—a point of view that one woman explained as follows:

“There is no difference. It’s just that women react differently as compared to men. Usually men are stronger in handling issues. For example, if women heard that someone was talking about them, they would react in a certain way, whilst men would just brush it off. [It’s] not necessarily that women are facing different treatment than men.”—Malawian PMTCT Woman #6

Lack of social support and male involvement.

Lack of social support and male involvement in PMTCT are intertwined. When male partners are not involved, women lose a major source of support and encouragement for participation in the program. Many PMTCT or LTFU women in this study believed they had enough support for PMTCT participation, but some LTFU women either had no support or had negligent or actively unsupportive family members, especially husbands. If a husband was angry or threatening, the woman had difficulty continuing with PMTCT. The words of a health worker illustrate this point:

“They [husbands] threaten them [their wives] because they don’t want their wives to come here [to the health facility]. They know that if their wives are seen coming here to PMTCT, then they will know that they are receiving ART. And they are ashamed that people would also think that they, too, are taking ART.”—Malawian Health Worker #72

In addition to threatening, some husbands made it difficult for their wives to go to the clinic or told them to stop taking their medication. For example, an LTFU woman in Uganda (#33) was married to a teacher with a regular salary, but he would not give her money for transportation to the clinic. She said, “He told me that he does not have money [for me] to go to the hospital for medication. He told me to go work for it, then I can go and get the medicine.” Husbands with multiple wives or partners were often not supportive or not around. In other cases, a husband withdrew support by leaving the marriage.

Both PMTCT and LTFU women talked about instability in their relationships with their husbands and partners and the lack of trust and communication within couples. In some cases, when a relationship was already unstable, it became worse when the woman disclosed her HIV status. In other cases, the disclosure brought on instability and led to the end of the relationship. For example:

“My husband, as I already said, he doesn’t stay long at home [because he has other wives]. At first, he encouraged me to go for VCT [voluntary HIV counseling and testing], but now we quarrel a lot. That’s all I can say.”—Malawian LTFU Woman #58

A lack of trust in relationships makes it difficult for women to disclose, which makes it hard for them to continue participating in the PMTCT program. Many men, too, are fearful of disclosing their HIV status to a spouse; often a woman learns her husband’s HIV status only after disclosing her status to him. A PMTCT woman in Uganda (#9) explained, “He was the first [to learn he was HIV-positive], but he didn’t tell me. He kept it a secret.”

Male participation in PMTCT is a form of social support for women’s participation. However, very few men accompany their wives to the clinic for PMTCT visits in either country. The policy at government clinics in Malawi and Uganda to encourage male participation—by allowing women who come with their husbands to the health facility for PMTCT services to go to the front of the queue—has not been successful. Men do not get involved because they want to maintain their reputation, and being seen going to the clinic with a woman is a sign that the woman is “wearing the trousers” in the family. Men in both countries described this point of view:

“I think it is very difficult for most men in this community to come out in the open and be involved in issues to do with HIV/AIDS…A lot of them are still quite fearful of being laughed at, and they want to maintain a good reputation. I may say that I have never seen a man and his wife going to the clinic together under this program.”—Malawian FGD #107

“Most men think that when a man accompanies his wife to the clinic, it means that the man is being controlled by his wife. I have children, but I only accompanied my wife once to the clinic in my entire life, because I viewed it as waste of time when I reached there.”—Ugandan FGD #91

Some men view the clinic as a female space and are embarrassed to go there. According to two participants in an FGD in Malawi (#127):

Participant #7: “Men are usually shy to stay in front or with a lot of pregnant women on antenatal care or PMTCT days.”

Participant #1: “Men are usually afraid that everyone would know that ‘this one is the one responsible for this pregnancy.’”

Some men in Uganda also said that pride may keep men away from the clinic, because if a woman does not have nice clothing, it indicates that the man is not providing for his wife.

Some urban women in Uganda felt that it was not particularly useful for men to participate. A PMTCT woman in Uganda (#3) said, “There is nothing much they do—maybe just encouraging you.” This opinion was not evident in the data from Malawi.

Lack of self-efficacy and agency.

Lack of self-efficacy, which was described as “laziness” by some respondents, was often attributed to women’s failure to accept their HIV status or to internalized stigma. Here are two examples:

“To be frank, the medical personnel at our clinic really try their best. They always encourage us to adhere to medication, but it’s just us people are not willing to accept our status and follow the right procedures.”—Malawian LTFU Woman #57

“Somebody can hate oneself and decide to leave the medicine.”—Ugandan PMTCT Woman #19

Self-efficacy and agency are related concepts, but agency describes the ability to act or exert power rather than just a belief in one’s ability. Respondents explained that women lacked agency because the norm was for husbands to make decisions within the family, including decisions about women’s health care. Women’s lack of agency may affect their self-efficacy by constraining their belief in their own ability to make decisions. Here are examples of quotations about women’s lack of control and the impact on PMTCT participation:

“We have some women who were told by their husbands that if you want to start taking that ART, you should leave my house. That means the woman has no say, though she wanted to start taking the medication. There was this other incident where the man reached a point of throwing the woman’s ART into the toilet because he didn’t want his wife to be taking it.”—Malawian Stakeholder #86

“One of the gender issues is that men take the decisions in the homes, so they decide whether you go to the hospital or not. It is the men who control the finances, so if they don’t give the money to go to the clinic, then how are you going? It is the men who determine where you get your treatment from.”—Ugandan Stakeholder #88

Women who appear to be “lazy” or to lack motivation to participate in PMTCT may have little or no control over decisions about their health.

In addition to being limited by their husbands’ decisions, many women feel they have little control over whether their husbands have other wives or relationships with other women. Gender roles allow men to show their masculinity by having multiple sex partners, often outside marriage. Although this behavior is tolerated, it has an impact on their wives and other female partners. A Malawian LTFU woman (#48) explained, “Sometimes it happens that maybe your husband doesn’t live right and that can make you get it [HIV].” Women’s lack of agency in relationships sometimes makes them feel helpless, which affects both their self-efficacy and their ability to participate in PMTCT. Another LTFU woman in Malawi (#56) explained how her lack of control pushed her to drop out of the program: “The other reason I stopped taking my medication was that he was still coming here to sleep with me. I was taking my medication and protecting myself, but he wasn’t. So I felt like I wasn’t doing anything [by taking the drugs].”

Other barriers.

Several other barriers to women’s PMTCT participation were mentioned by respondents and were the main reason some LTFU women dropped out of the program; they included lack of money for transport to the clinic, lack of respect from health workers, food insecurity, ART side effects, faith beliefs, and being too busy to participate. Here we focus on health system barriers related to gender—specifically women’s need to travel to be caregivers in their extended families and how their missed visits interact with their lack of agency. A Uganda LTFU woman (#35) explained, “I went to visit my family. They called us on the phone [to say] that my brother was on his deathbed…When I came back, my appointment day for drug refill had already passed.” Several PMTCT and LTFU women talked about missed appointments and either not being welcomed back into the system or being refused a transfer to another clinic. For example:

“When I went to Blantyre, it was difficult for me to continue taking the pills because I didn’t have any idea where to get them. After two months, I came back. So, I went to the hospital and I asked them to give me a transfer to start getting the drugs at [another] hospital, but they refused…Since then up to now I haven’t gone back to get the drugs.”—Malawian LTFU Woman #48

These quotations show that some women feel they do not have the agency to change how they are served at the clinic. They are afraid to push too hard when services they need are not readily offered or when they are treated poorly. This may be related to female submissiveness dictated by local gender norms.