Participant responses reveal multiple intersecting factors across individual, interpersonal, healthcare provider, and community levels that complicate partner disclosure of HIV status among women diagnosed later in pregnancy. Important themes of perceived linkage between partner non-disclosure later in pregnancy and women’s increased vulnerability to stigma, financial neglect, and violence from male partners as well as preferred approaches for partner disclosure are presented along with illustrative quotes. Figure 1 depicts the interrelated factors identified in a socio-ecological model of safe partner disclosure. We have focused mainly on the experiences of who presented late for ANC and reported non-disclosure, triangulated with perspectives from other participants (early ANC presenters, late ANC presenters who disclosed, male partners, and healthcare workers) to enhance understanding.

Fig. 1

Socio-ecological framework of partner disclosure in late pregnancy. Note Interconnected factors at individual, interpersonal, health facility and community levels underpinning partner disclosure among women diagnosed with HIV late in pregnancy

Partner non-disclosure of HIV status in late pregnancy

Amongst the 20 women who were diagnosed with HIV late in pregnancy, only three said they had disclosed their HIV status to their partner within three months of diagnosis. These women were married, engaged in a viable income generating activity, and reported no major relationship issues like violence. Perceived need to adopt safer sex and to minimize risk of perinatal transmission motivated them to disclose. Being in a stable relationship aided partner disclosure. “I was sure it was not me… I don’t sleep around so I was not feeling guilty and scared… to tell him” (Woman, late ANC, disclosed, Uganda). Women experienced psychological relief, improved partner relationships and support for HIV treatment after partner disclosure.

It was fine. He also got tested after I told him, and he was negative…. he was very supportive, reminded me when to take my medicine (Woman, late ANC, disclosed, South Africa).

Many of the women who had not informed their partners about their HIV status said they disclosed to a female family member for psychological support.

Several male partners, whose women disclosed during late pregnancy, reported that disclosure was beneficial and facilitated support for the woman and protected the health of the rest of the family. Men who were already positive at the time of their partners diagnosis were more likely to accept and be sympathetic to their partners’ HIV status.

It’s a lady that brought me here…. saw that I was infected. So she was able to disclose to me when they found she was positive. I also told the one at home that I am infected, and I took her to our place and they found out she wasn’t infected. … we remind each other to take our medicine (Male FGD, Uganda).

However, disclosure also led to relationship breakdowns, as this male participant noted:

For me they got me a girl and they wanted me to marry her. … we met and she got pregnant. …she got drunk and she told me, ‘’ for me I am HIV positive… [but]I have been given medicine, and I use it well. And when you use the medicine well you cannot infect another person.” That was the end of our relationship. The person who got her for me called her and told her “You are stupid, if you go around telling everyone, they will run away you end up with none. …(Male FGD, Uganda).

Women’s reluctance to disclose to partners during late pregnancy was driven by individual, interpersonal, health facility, and community factors, as described below.

Individual

One of the most frequently mentioned reasons was denial. Many women who were diagnosed with HIV late in pregnancy found it difficult to accept their HIV positive diagnosis because they had not experienced any signs and symptoms or any major health complications throughout their pregnancy. They preferred to wait a bit longer to ‘confirm’ the diagnosis or see if they could cope without disclosing, especially close to delivery.

When the doctor said I was positive, I did not believe it. Because I feel fine, my pregnancy has not given me any problem. I said let me wait, maybe it is a mistake (Woman, late ANC, non-disclosed, South Africa).

Late ANC attendees commonly experienced guilt for not seeking ANC earlier and thereby increasing perinatal HIV transmission risk. Women often believed that delayed diagnosis automatically meant their baby would acquire HIV, leading to psychological barriers to disclosure.

When I consider myself pregnant with HIV condition, I feel very bad! The baby could be infected. I just say, it is better to die with my AIDS-related illness than disclosing… (Woman, late ANC, non-disclosed, Uganda).

Poverty and financial dependency were other frequently cited reasons. Many women feared relationship problems and loss of financial support upon HIV disclosure to their partner, particularly in unstable relationships. This fear intensified during late pregnancy and early breastfeeding when women required more financial assistance and had limited capacity for paid work.

If I tell him, he may refuse to take care of my child…. As soon as he gets to know I am HIV+, he will run away and leave me (Woman, late ANC, non-disclosed, Uganda).

As a result, several late presenters preferred to defer partner disclosure until after childbirth.

So, what pregnant mothers tell us is, ‘Doctor, you wait for me to deliver because I do not have financial support, after delivery, I will inform him… (CHW, Uganda).

Partner disclosure was widely noted to be easier for women who were gainfully employed and able to sustain themselves financially. In addition, women felt they lacked essential communication skills.

I do not know how to disclose to my partner, how to talk to him so he does not get upset. It is something I am still looking, hoping the doctors will teach me (Women FGD, Uganda).

HIV issues were deemed particularly sensitive during pregnancy and thus require extreme care when engaging in conversations on such issues.

Interpersonal relationships

Trust played a crucial role in disclosing HIV status to a partner during late pregnancy. It fostered open communication, confidentiality, and reassurance against accusations of infidelity.

It depends on how much we trusted each other. I was free to talk to my husband because I trusted him, and he also trusted me. I knew he would keep it a secret and not talk to anyone about my HIV… or accuse me (Women FGD, South Africa).

Across both countries, many women who initiated ANC late did not live with their partner and felt less urgency to disclose as they could easily keep their status a secret. Such separate living arrangement undermined communication and trust between partners which triggered violence when one of the partners was diagnosed with HIV.

Relationship issues undermined women’s ability to disclose to their partner during late pregnancy. “Already we were having issues, always fighting. So, I felt it makes matters worse if I told him” (Woman, late ANC, non-disclosed, Uganda). Women experiencing relationship challenges feared their partner’s response to disclosure, especially potential physical, emotional, and sexual abuse. “I am afraid of telling him because maybe he might beat me up or kill me… judging by his character” (Women FGD, South Africa). Late pregnancy HIV diagnosis heightened vulnerability to partner violence due to increased concerns of perinatal transmission and doubts about paternity, as illustrated by this male partner,

… six months into the pregnancy you will have spent a lot. Then you are told, ‘she is positive.’ You start to have doubts that the baby might not be yours, you feel cheated… (Men’s FGD, South Africa).

Pregnant women in South Africa reported partners’ alcohol use triggered aggression and impatience, which hindered disclosure. “… I don’t have the guts… it is not easy… especially because he is always drunk…” (Women FGD, South Africa). Women felt increased vulnerability to the consequences of violence for themselves and the unborn baby later in pregnancy, and often chose to not disclose to protect the unborn baby.

Community

With HIV widely associated with promiscuity and infidelity, most women adopted non-disclosure as a strategy to mitigate stigma. Men’s response to their partner’s HIV diagnosis during pregnancy was influenced by fear of community gossip and stigma. When HIV diagnosis occurred later in pregnancy, couples are presented with limited option to deal with and avert the stigma, including potential termination of the pregnancy. In Uganda, couples were further constrained by the illegality of abortion in the country.

You feel people … will laugh at you, they will say “look his wife is positive but he is not, maybe she has been cheating” … it is not a good feeling. If she [tested positive] when they pregnancy is still small you can terminate but after 20 weeks it is too late… (Men’s FGD, Uganda).

Moreover, limited community understanding of ART effectiveness, including newer drugs like dolutegravir, undermined partner disclosure.

When someone sees you giving birth when you are HIV positive, they think you are stupid… because you will give birth to a child having HIV… (Women FGD, Uganda).

Stigma towards pregnant women living with HIV and blame for perinatal transmission further hampered disclosure, causing anxiety and affecting confidence in informing partners.

Health facility level

Women found health care providers’ support toward partner disclosure after HIV diagnosis insufficient, especially when diagnosed late in pregnancy. Women, who initiated ANC late in pregnancy, were rushed through pre- and post-test counselling for ART initiation and felt overwhelmed with information. Time with and information from counsellors were inadequate.

Counsellors did not give us enough information because of lack of time, the clients were many yet they [counsellors] were few (Women FGD, Uganda).

Women needed time to process the information, evaluate potential effects of partner disclosure and therefore felt ill-prepared for partner disclosure.

I need time to think about how to discuss HIV topic with my partner. When am ready I can ask him… Basing on his response I may be able to disclose or give it time (Woman, late ANC, non-disclosed, Uganda).

Shortage of counsellors and insufficient skills restrained providers from effectively engaging with pregnant women living with HIV for disclosure readiness. HCWs, responsible for ANC and HIV services, required extra time for late first ANC visits due to numerous tests and checks within a limited timeframe. “Some counsellors rush through the session with pregnant mothers due to lack of time…” (HCW, Uganda). Further, some HCWs’ lack of compassion and negative attitude towards late ANC seekers hindered education and support for partner disclosure.

I fear being shouted at the clinic. In fact, when I booked late, I got shouted at, it is hard to learn anything so that you can disclose (Woman, late ANC, non-disclosed, South Africa).

Lack of trust in HCWs impeded disclosure, as pregnant women living with HIV feared their personal information wouldn’t be kept confidential. In Uganda, this lack of trust undermined assisted partner notification due to concerns about disclosing information about multiple partners.

Sometimes women fear disclosing to us (health workers) right away when they present for ANC, because they fear we may disclose to their partners… (HCW, Uganda).

Effects of partner non-disclosure in late pregnancy

Many women concealed their medication due to non-disclosure, which could lead to disengagement and sub-optimal adherence.

The time I decided to swallow the drugs can approach when my husband is still at home, so I hide it from him and wait for him to leave… at times I find myself going past the time (Late ANC, non-disclosed, Uganda).

Dolutegravir, with its small size and low pill burden, allowed discreet concealment of HIV status and treatment until disclosure readiness. Women reported experiencing cognitive dissonance from the need to inform their partner to protect them and the baby on the one hand, and a feeling of unpreparedness and concern about their safety if they disclosed to their partner on the other. Many others reported experiencing anxiety, despair, anger, confusion, regret, guilt, and a negative outlook on life. Such negative psychological effects often complicated pill taking and clinic attendance among the women.

Perceptions of approaches for safe partner disclosure

We found disclosure preferences among female and male participants overlapped overall, with some country-specific differences.

Timing of disclosure

The timing of partner disclosure was important to both women and men. Similar to women’s reports (shown above), men felt their partner’s disclosure of HIV during late pregnancy would be stressful.

It will be difficult when she is pregnant and she says she is HIV positive… that is something else… that would be hard for me (Men FGD, South Africa).

Men’s expectations placed the responsibility on women to determine the timing and manner of disclosure, increasing women’s stress. Men emphasised the importance of polite communication about HIV to prevent anger and foster understanding. In South Africa, most men preferred immediate disclosure upon HIV diagnosis.

I think the sooner the better. I think you should disclose it immediately… so he can also go test. You need to handle the situation before it gets worse. You might be hiding it from him and maybe he too has it (HIV) (Men FGD, South Africa).

Other men, mainly from Uganda, did not want women to disclose during a stressful situation like financial problems.

When someone is stressed and there is a lot of poverty and then one brings such news; you can see as though you are both going to die tomorrow from AIDS-related illness; but it needs to be built on slowly (Men FGD, Uganda).

Some men and women preferred women diagnosed with HIV late in pregnancy to defer disclosure until after giving birth. “It’s good to wait and tell him after delivery… you can manage if he leaves you or stop giving you money” (Woman, late ANC, non-disclosed, South Africa). However, participants recognized that prolonged non-disclosure could foster mistrust and complicate future disclosure.

The longer you leave it the harder it gets. When you leave it too late, he will suspect that you are the source… (Women FGD, South Africa).

Participants acknowledged that the optimal situation for safe disclosure varied among families, and suggested HCWs assist couples in identifying the ‘right’ moment and provide ongoing guidance to women diagnosed late in pregnancy. Stepwise disclosure and collaborative preparation with HCWs were preferred by most women.

Professional assisted disclosure and couple testing

Women and men in South Africa and Uganda preferred health worker-initiated or mediated disclosure over self-disclosure. HCW involvement provided counselling support and reduced blame and conflict.

If am scared to tell him myself, I bring him to the hospital then the basawo (healthcare workers) counsel him … so he can understand (Woman, early ANC, disclosed, Uganda).

Some women preferred couple testing and receiving test results simultaneously with their partners, along with couple counselling.

The easiest way is to get everyone to test, it becomes easy when couples go together to the testing stations and test together (Woman, late ANC, non-disclosed, South Africa).

However, men’s reluctance to visit ANC posed a challenge for this approach, although some men welcomed couple counselling.

When she is tested…the government should provide her with a letter stating that I should come to the clinic with her… so that we are both tested by a professional who can provide us with advice (Men FGD, South Africa).

A key challenge noted with HCW-mediated disclosure was the lack of trust between HCWs and individuals not ready to disclose. Moreover, limited capacity in terms of time and skills undermined HCWs’ ability to intervene, with some facilities lacking professional counsellors. Insufficient services for addressing IPV and mental health were also reported as barriers to professional-mediated disclosure in both settings.

Some women proposed home visits for testing and counselling, but concerns about unintended disclosure and stigma arose, particularly in extended or polygamous families lacking privacy for confidential testing. Prior notification and integrating home testing into general health promotion community outreaches could mitigate stigma.

Empowerment for safe disclosure

Women in both countries highlighted the importance of individual and economic empowerment alongside safe partner disclosure interventions. They urgently needed skills in communication, timing, and strategies for disclosure, and sought mentoring and coaching.

I request you that you bring us those trainings, if you face such a situation then you know how to go about it (Woman, late ANC, non-disclosed, Uganda).

In Uganda, women identified the potential role of peers; other mothers living with HIV could support women, who were newly diagnosed, to identify the right time and approach to disclose. Income-generating activities were also desired to enhance financial independence.

I suggest women have their own source of income to take care of self in case man leaves after disclosure (Women FGD, Uganda).