“He accepted me the way I am … most people can’t”: A Qualitative Analysis of HIV Stigma experienced by HIV Sero-Different Couples who Desire to Conceive along Lake Victoria, Kenya

Abstract

Objective:

Safer conception strategies to reduce HIV transmission to sero-different partners are underused. Studies suggest this may be due to HIV-related stigma. We conducted a qualitative study to examine how forms of HIV stigma may impact reproductive decisions and seeking safer conception services.

Methods:

In-depth interviews (IDIs) with 16 sero-different couples residing in Kisumu County, Kenya explored HIV-related stigma surrounding pregnancy, where stigma comes from, and if stigma might impact couples seeking safer conception services. Deductive and inductive approaches and framework analysis were used to analyze data at individual and dyadic levels.

Results:

Couples reported anticipated and enacted HIV stigma from the community. Among couples, there was little evidence of internalized stigma, and most participants described partner support and acceptance. Enacted stigma from healthcare workers was also rare. Although not described as internalized stigma, most participants expressed fear of HIV transmission to children and partners.

Conclusion:

These findings provide insight into sources and types of stigma that sero-different couples experience while navigating reproduction and its effect on seeking safer conception services. Interventions that address stigma from the community may help couples overcome stigma experienced at that level.

Introduction

HIV stigma is pervasive and a major barrier to achieving HIV elimination (Nyblade et al., 2021). HIV-related stigma, defined as negative attitudes towards and beliefs about people living with HIV, is a social process that reinforces marginalization and devalues certain groups (Cuca et al., 2012; Goffman, 2009). The HIV Stigma Framework conceptualizes HIV stigma as occurring in three forms: internalized or self-stigma, anticipated, and enacted or perceived stigma (Earnshaw & Chaudoir, 2009). Internalized/self-stigma is when a person living with HIV internally accepts or endorses the negative feelings associated with their HIV status (Link, 1987). Anticipated stigma refers to the level of expected stigma in future interactions with people (Earnshaw & Chaudoir, 2009). Enacted stigma refers to actual or perceived prejudice and discrimination experienced from others (Earnshaw & Chaudoir, 2009; Mall et al., 2013; Parker & Aggleton, 2003; Steward et al., 2008; Weiss et al., 2006). Stigma can take many forms, including fear, prejudice, and stereotypes, and can lead to the exclusion or marginalization of individuals or groups based on real or perceived characteristics and can reinforce societal hierarchies of power (Stangl et al., 2013). These various forms of stigma can be experienced by individuals, within dyads, or from the community or healthcare providers. Experiences of stigma during social interactions with various people or groups or within one’s physical or social environments can be a significant barrier to engagement in HIV care.

Experienced or enacted and anticipated stigma have been shown to have profound effects on the overall health outcomes of people living with HIV (Hatzenbuehler et al., 2013), including impacts on mental health (Armoon et al., 2022; Crockett et al., 2019) and retention in HIV care in sub-Saharan Africa (Abbamonte et al., 2020; Hlongwa et al., 2020; Jones et al., 2020; Kalichman et al., 2020; Kohler et al., 2014; Kumwenda et al., 2023; Shubber et al., 2016; Turan et al., 2011; Wanjala et al., 2023). For sero-different couples, stigma can also include HIV associated stigma experienced by the HIV negative partner (Rispel et al., 2015) and emotional stress that impact intimacy among the dyad (Foster-Pagaebi et al., 2025). However, emerging research suggests that supportive couples may demonstrate resiliency against HIV stigma from outside the relationship (Gutin et al., 2023). Given the adverse impacts of stigma from various sources, addressing stigma as part of the global HIV response remains a priority (Joint United Nations Programme on HIV/AIDS, 2025; UNAIDS, 2021).

Sero-different couples face particular risks for HIV transmission to partners and babies when they try to conceive and may face stigma around reproduction. Research has established that many HIV-affected couples living in sub-Saharan Africa desire to have children (Davey et al., 2018; Heffron et al., 2018; Peltzer et al., 2018) but fear transmitting HIV to partners (Mindry et al., 2017; Motaharinezhad et al., 2024; Spangler et al., 2018). Safer conception services that help reduce the risks of HIV transmission are available but have been underutilized in sub-Saharan Africa (Gwokyalya et al., 2019; Khidir et al., 2018; Wagner et al., 2021). These services include antiretroviral therapy (ART) (Cohen et al., 2011), pre-exposure prophylaxis (PrEP) (Baeten et al., 2012), vaginal insemination (Mmeje et al., 2012), timed-condomless intercourse (Vernazza et al., 2011), and medical male circumcision (Auvert et al., 2005), all of which lower HIV transmission risks. Studies have found that HIV-affected couples may face stigma from their partners, the community, and from healthcare workers (HCWs) around starting a family (Gutin, Harper, Bitsang, et al., 2020; Kimemia et al., 2019; Mindry et al., 2017; Motaharinezhad et al., 2024; Spangler et al., 2018). These influences may reduce or delay couples’ uptake of services, even when they are available.

People living with HIV in Kenyan fishing communities around Lake Victoria carry a heavy burden of HIV. While there has been great progress on the HIV response in Kenya nationally (Borgdorff et al., 2018), the top five highest HIV prevalence counties are in the lake region (National AIDS and STI Control Programme (NASCOP), 2022). Fisherfolk populations are highly mobile and are known to experience difficulties accessing fixed location clinics and have poor uptake of HIV prevention interventions (Camlin et al., 2016; Olugo et al., 2025; Sheira et al., 2025; Sileo et al., 2019). Prior stigma research has focused predominantly on HIV disclosure (Abuogi et al., 2020) or how stigma affects treatment adherence and care engagement (Nordberg et al., 2020; Okorie et al., 2023). Most studies in the safer conception space among sero-different couples have aimed to understand decision making around safer conception method choice (Brown et al., 2023; Gitome et al., 2024) but there are few studies that examine how stigma can impact uptake of safer conception services (Gutin et al., 2021). To meet the reproductive health needs of this population that is at high risk for HIV, we conducted a qualitative study among sero-different fisherfolk couples to explore the experiences of HIV-related stigma from various sources and how this may affect reproductive decisions including whether couples would consider seeking safer conception services. Findings will inform the development of a couple-based safer conception intervention to support sero-different couples to safely realize their reproductive goals while minimizing the effects of HIV stigma.

Methods

Study Design and Setting

We conducted qualitative in-depth interviews with heterosexual HIV sero-different fisherfolk couples as part of the Couples’ Reproductive Decision-making (CoRD) Study, with the aim of examining barriers and facilitators to male participation in safer conception services. The study took place in three beach communities in Kisumu County, Kenya. The county has a generalized HIV epidemic and an HIV prevalence that is almost four times higher than the national average (11% vs. 3%) (National Syndemic Diseases Control Council, 2025).

Sampling and Participant Recruitment

Couple inclusion criteria included at least one person in the relationship currently being engaged in fishing/fishing-related occupations, one partner living with HIV and the other partner not living with HIV (sero-different), interested in having children/more children together, both partners aged between 18–50 years, currently sexually active with each other, in a relationship for at least six months, and had mutually disclosed their HIV status. Participants were purposively sampled based on the HIV status and sex of the person living with HIV so that half of the couples had a male partner living with HIV and half had a female partner living with HIV.

HCWs used client registers at health facilities to identify sero-different couples or partners of unknown HIV status. The participant living with HIV was identified as the index client and was the primary point of contact for study recruitment. HCWs first contacted index clients to assess interest in the study. Interested index clients were then contacted by the research team to discuss details of the study using approved standardized recruitment scripts. Interested couples were invited to a private location where participant eligibility was determined and consent was gathered. All couples were tested for HIV using rapid blood tests to confirm sero-different status.

Data Collection

Data collection was conducted between November 2023 and February 2024. The data collection was informed by a social constructivist framework (Lincoln & Guba, 2013) which focuses on capturing and reporting multiple experiences, norms, and perspectives so that by examining various viewpoints it is possible to develop a deeper understanding of a particular context and cultural setting. Interviews were conducted by two experienced and trained qualitative researchers, both fluent in the local languages of the region (Dholuo or Swahili). The interview guide was informed by prior literature, in consultation with experts in the field, and with the Kenyan research team. Interview guides were translated from English into the two local languages, then back-translated to English to ensure accuracy. Interviews explored experiences of HIV-related stigma both generally and with regard to having children within a sero-different relationship. Questions included, “How do you think healthcare providers feel about couples having children when one person is living with HIV and the other person is not? and “How do you think people in your community feel about couples having children when one person is living with HIV and the other is not?” Couple interviews were conducted separately but simultaneously by gender-matched interviewers, so that members of the couple would not bias each other's answers. Question prompts were the same for each person in the dyad; however, answers were probed further to gather specific experiences related to HIV status. Interviews were audio-recorded and lasted approximately 60 minutes. Each participant received Ksh 1,000 (~$6.50 USD) as compensation for their time. Following each interview, the research assistants developed field notes, and these were discussed during weekly calls. All interviews were transcribed and translated into English and checked for quality and accuracy by the study staff. We monitored for conceptual depth of the data following the approach of Nelson (Nelson, 2017) and assessed understanding as achieved when no new themes, subthemes, or theoretical discoveries emerged across transcripts, a process that Saunders and colleagues call inductive thematic saturation (Saunders et al., 2018).

Data Analysis

The research team consisted of five researchers (including two Kenyan research assistants (a man (FO) and a woman (MA) who were both residents of the study area, spoke local languages, and completed tertiary-level education), a Kenyan qualitative research coordinator (PO, a woman who is also a resident of the study area, speaks local languages, and has completed tertiary-level education), and two US-based qualitative researchers (SAG - a White, American woman who completed advanced tertiary education, represents a US academic institution, and does not speak the local language and LC (a White, American woman who is a student completing advanced tertiary education). While the two US-based qualitative researchers bring a Western perspective, they are also trained to analyze stigma through various levels of participant experiences. The remaining team members are deeply rooted in this community and contribute essential cultural and sociological insight into participant experiences.

Data analysis began by reading transcripts and creating memos which were discussed by the research team (Miles et al., 2014). A codebook was then developed using deductive and inductive approaches, including creating a priori codes from interview guides and inductive codes based on a sample of initial transcripts. The research team independently coded the same transcripts and compared code applications to ensure coding reliability. Discrepancies were discussed to reach consensus. Dedoose, a data management software, was used to facilitate coding (Dedoose, 2023).

Framework analysis, a qualitative analysis method that uses data matrices to focus and organize coded data, was used to analyze the data at the individual and couple-level (Gale et al., 2013). This method of analysis brings out salient themes critical for answering key research questions and allows for easy comparison of data both within and between individuals and couples. This approach has been used with couples affected by HIV in sub-Saharan Africa (Conroy et al., 2018; Gutin et al., 2025; Jere et al., 2023). Furthermore, data analysis was grounded in the HIV stigma framework, which distinguishes between different types of stigma and its impact on people living with HIV (Earnshaw & Chaudoir, 2009) and was also informed by the social ecological model which posits that individuals are nested within multifaceted environments and that health behaviors are impacted by relationships and experiences at multiple levels (e.g., individual, interpersonal, community, and society) (Bronfenbrenner, 1979). The research team used Dedoose to categorize code excerpts into themes. Themes were then reviewed, and exemplar quotes were populated into an Excel spreadsheet for analysis.

Ethical approvals

This study was approved by the Kenya Medical Research Institute-Scientific Ethics Review Unit (KEMRI-SERU, 4792) and the University of California, San Francisco Institutional Review Board (UCSF-IRB, 22–37617). All participants provided written informed consent. All research protocols adhered to the Declaration of Helsinki.

Results

A total of 16 mutually disclosed, sero-different couples (n=32 individuals, 8 sero-positive male index participants and 8 sero-positive female participants) residing in fishing communities along Lake Victoria in Kisumu, Kenya participated in qualitative in-depth interviews. The median age of participants was 35 years (IRQ 29.5 – 38.5), with men being older than women (38 years (IQR 36–41) vs. 30 (IQR 27–34) years, respectively). Relationships had lasted a median of 9 years (IQR 5–12.5), and participants reported a median of 3.5 children (IQR 2.5–4). Participants in this study described various types of stigma (anticipated, perceived, and enacted) and the people whom they did or did not experience it from. We identified three main themes that emerged from the data as significant issues as couples navigated their need for safer conception: 1. internalized stigma, partner support, and fear of HIV transmission, 2. experiences of community stigma, and 3. rare experiences of stigma from healthcare workers. Selected quotes are used to illustrate common themes and variations in couples’ experiences.

Internalized stigma, partner support, and fear of HIV transmission

For most couples in this study, among whom partners living with HIV had disclosed to their seronegative partner, stigma within the dyad was rare. Most sero-negative partners described accepting the HIV status of their partner and said that a difference in HIV status was not a problem. However, for several couples, HIV status disclosure had been a challenge. Most of the women living with HIV in this study sought the support of HCWs to provide education when disclosing their status. However, four couples described how they struggled with disclosure, and in most of these couples, it was the male partner who was living with HIV who faced challenges. The primary reason for men not disclosing was fear of abandonment and relationship dissolution, often rooted in internalized HIV stigma and feelings of shame. One man who was living with HIV described fearing that his partner might leave him when she learned about his HIV status. He said, “… when we got tested, I was found to be infected, but my wife wasn’t infected. I thought that sometimes this might be the reason my wife is going to leave me” (38 years old, in relationship 8 years). His wife faced fears about HIV transmission and was unsure about how they could stay together as a couple if they were sero-different, echoing stigmatizing views that exist in the community. She said, “We had a hard talk when they found that he was positive and I am negative. I just asked how we protect each other. That is where we had concerns. Because …I could have said within my heart that, how am I going to stay in this life where one person has the HIV virus and the other doesn’t?” (28 years old, in relationship 8 years). Another man living with HIV shared his experience with disclosure to his partner and realizing that his partner struggled with accepting his status. He said, “… when she realized I was infected … I wanted us to be together, but I noticed accepting wasn’t easy but hard for her” (29 years old, in relationship 5 years). His wife felt differently, but the internalized stigma that she describes in her male partner is evident. She said, “So when he told me his side of the story, I understood him, and he also understood me. He told me, “Thank you, there is no one who would accept to stay with a person who is HIV positive” (23 years old, in relationship 5 years). The experience described here suggests that in the dyad, through communication, validation, and support from partners not living with HIV, it can be possible to counterbalance internalized HIV stigma.

Despite some HIV disclosure challenges, partners living with HIV (whether they were male or female) said they did not feel stigmatized by their partners who were not living with HIV. Some participants shared that their partners were a source of support to them after learning about their discordant HIV status. One woman living with HIV explained, “When I told him [about her HIV status], he wasn’t surprised, he just made a decision and became my support system … If I want to delay taking the medication, he would say, ‘No, sit down first and do what you are supposed to do” (38 years old, in relationship 13 years). For another couple, a man living without HIV shared his experience of learning of his wife’s HIV status and explained how being educated about HIV helped them to stay together. “We went for testing, and they found one has but the other doesn’t, so we were made to sit down to be taught one, two, three and got the knowledge, and applied the knowledge till this moment” (38 years old, in relationship 3 years). Here again through the dyad relationship we see acceptance and partners who are not living with HIV becoming a source of psychosocial and emotional support.

While couples generally did not experience stigma from their partners, their greatest fear was the risk of transmitting HIV to infants. These concerns were discussed by most couples and were felt by partners who were living with HIV and those who were not. One man who was not living with HIV explained the concerns that people living with HIV can have about transmitting HIV to their children. He said, “HIV virus brings a negative thought like sometimes you think when you have HIV that is the end of your life, that is the thought HIV can bring to the infected person. It can also bring a thought that the child you want to have might also be infected with HIV and it is going to die soon” (31 years old, in relationship 8 years). A man living with HIV had concerns about transmitting the virus to his partner and his child. He said, “… maybe if I get this woman pregnant, she can deliver a child who is infected with HIV, that is the thought I have in my heart, yes, that is always in me” (35 years old, in relationship 6 months). However, men and women described how HCWs can be a source of support and help HIV-affected couples to have children without HIV. A woman living with HIV explained how she had concerns about transmitting HIV but found comfort in advice from HCWs and access to medication. She said, “When you are planning to have a child, you might start thinking, now is the child … going to be like me [having HIV]? Will the child also be infected? When you have conceived the doctors just encourage that you should start clinic [engage with HIV care and treatment], so they walk with you until you deliver” (26 years old, in relationship 8 years). For participants in this study, fear of transmission was often intertwined with feelings of shame and concern that they would cause harm to their partners and children. However, partner support and education provided by HCW appeared to combat feelings of shame and fear, providing the opportunity for couples to focus on achieving their reproductive health goals together.

Experiences of Community stigma

For many study participants, stigma from the community was pervasive. Most participants living with HIV described how stigma from community members came in both direct and indirect forms and was both perceived and enacted regardless of gender. One man living with HIV described how a community member told his wife about his HIV status. He said, “I found one person who talked about me. He told my wife that you are married to someone infected with HIV, you will die. But by good luck, my wife heard him, [she said] ‘whatever you are saying we already went to the healthcare provider and tested, so you are telling me what I know’”(38 years old, in relationship 1 year). Participants described community members saying that they or their children were going to die soon because they had HIV. One man living with HIV explained, “that person was insulting me … how I’m living with HIV, my death is nearer” (45 years old, in relationship 8 years). Fear of HIV leading to premature death was a significant driver of enacted stigma from community members often leading to othering and shunning people living with HIV from their social networks.

People living with HIV also described experiences where community members gossiped about them or spread rumors and made assumptions about their HIV status or the status of their children. One woman living with HIV explained what people were saying about her and her family. She said that people say, “(Name) these days is taking ARVs, she is very fat … They also know that my children are also on medication, but they are not. That’s what they say … even my eldest son they know is on ARVs, but he is not” (32 years old, in relationship 17 years). People living with HIV also perceived stigma at the community level regarding people living with HIV having children. One woman living with HIV explained, “I have heard some time back when another woman was saying, ‘So and so are HIV positive and they are having children.’ I really felt bad about it” (38 years old, in relationship 13 years). Interestingly, in situations where a male partner was not living with HIV and reported no experiences of stigma, all the female partners living with HIV reported enacted stigma toward them. Community based stigma that was perceived by the women living with HIV in the dyad may also be reflective of gendered roles within the community including the role of mothers to protect their infants from risk.

Among partners in this study who were not living with HIV, many had either experienced or perceived stigma at the community level, although this was rarer. More women who were not living with HIV perceived stigma compared to men who were not living with HIV. One woman who was not living with HIV shared her experience of community members making assumptions about her HIV status and that of their children due to picking up medications for her partner.

“Because I used to collect the drugs for my husband. So you know if someone sees you there in the morning, they just know that ‘that one has gone to collect ART medication’ … Most of the time people take it that I am also on medication together with my children, I heard some women … I hear they are talking outside that I am taking ART with all my children”

(31 years old, in relationship 12 years).

One woman living with HIV described the stigma that her partner anticipated, even though he was not living with HIV. She explained that he was concerned that people would think he was on ART although he was on PrEP. She said, “Now the reason for his embarrassment is, he will feel that people will think (Name) is taking ARV drugs and for him he will be given PrEP. So he will imagine that people will be saying, ‘So both (Name) and the wife are taking drugs from here’ … That is what is disturbing him” (39 years old, in relationship 11 years). This stigma that is directed at partners who are not living with HIV shows that even if you are not the partner affected by HIV, you can still experience the negative consequences of stigma.

Both men and women who were not living with HIV described how the community was not supportive of sero-different couples having children. One woman living with HIV explained that she felt her community would make fun of her for having children in a sero-different relationship. She described a lack of knowledge about prevention of mother-to-child transmission of HIV and how a person pretended to be friends with her just to see if she was giving medications for HIV to her child. She explained that, “They can say that such a person is infected but has given birth to a healthy child with no HIV virus … they can just ask how come this person who is infected gave birth to a healthy child? How did she do it?” (23 years old, in relationship 5 years). Another man living with HIV felt that the gossip from community members came from fear, which furthered his resilience against stigma and allowed him to move past feeling bothered by it. He said, “Yes, the community has talked so many times about me that I have HIV, but my wife doesn’t have, yes but to me that doesn’t bother me so much because someone who fears you is the one who gossips about you, but someone who looks down upon you can just come and tell you something face to face” (38 years old, in relationship 1 year).

Some enacted stigma came from family members. One man who was not living with HIV described an interaction he had with his uncle.

“There are people who came, including my Uncle, who came and said to me, ‘son of my sister, now that you are married to this lady and you know … she has this thing [HIV] and you don’t have [you are HIV-negative], are you seeing as if you are going to make it?’ I told him, ‘Uncle I already decided, I already chose, so this is my house, so just let it be where God will place us”

(37 years old, in relationship 12 years).

A woman living with HIV described an experience that she had with her partner’s family. Her partner’s family told her that because she has HIV, she is going to transmit HIV to her husband and kill him.

“It is really hard. The family doesn’t really accept it … They only say that I am going to kill their son. The first time I heard it, I was really hurt and I went and told him. He told me that, ‘those people have not married you. I am the one who has married you, I am the one who accepted you’ … There is a mother-in law … she called me … when I went we started talking and she blurted out some words. Her words really hurt me … She told me I am an HIV positive woman, how can I get married to her son and the son doesn’t have HIV. I told her, ‘it is something I sat him down and told him, and he accepted before we took the next step of me coming here”

(40 years old, in relationship 6 years).

Enacted stigma from family members and the wider community often stemmed from fears of transmission and premature death. While this may be driven by a lack of information and trauma from historical impacts of the HIV epidemic, it fuels social discrimination and stigmatizing behavior, ultimately fueling internalized stigma for people living with HIV.

Rare experiences of stigma from healthcare workers

Stigma from HCWs was generally rare. Most participants believed that HCWs were there to support them and provided clear information and guidance on how to prevent HIV transmission. Many stated they trusted the guidance and information provided by HCWs and would feel comfortable discussing issues related to conception with them. One man who was not living with HIV explained that he felt supported by HCWs as it pertained to HIV prevention and having children. He said, “So those are the teachings of the healthcare workers in this hospital … telling us that it is not the end of life, life is in abundance, and you will live longer and achieve all your plans, including having children without HIV as you plan” (31 years old, in relationship 8 years). Many women believed that HCWs would provide guidance, education, and support if, and when, they and their partner wanted to have a child. Some women described prior positive experiences with HCWs. One woman living with HIV shared her experience with HCWs during the birth of her daughter. “The clinic where I used to go when I was pregnant with my daughter, that nurse was very happy. She used to teach us, so we don’t slip and what to avoid, she tried to teach us” (40 years old, in relationship 6 years). In this way, HCWs were a positive source guidance and encouragement and helped combat both internalized and community stigma.

Some couples described how HCWs became a trusted source of information and support when they had assisted the couple during HIV testing or helped with HIV status disclosure. Four couples discovered their sero-different status through couple HIV testing. For one man living without HIV, discovering his partner’s status was a significant challenge that was made easier with the support of a HCW. He said, “It was hard therefore agreement became so hard, and what made myself to be someone open is when it reached a point where we had to be guided by a specialist from the hospital who is healthcare provider, offering education and clarifying for us, yes the importance of how these medicines works and how they offer support” (47 years old, in relationship 10 years). For one woman living with HIV, she requested the support of a HCW to help disclose her status and test her partner. She said, “I told them [the HCW] I have a difficult man, and I would like if you can come and test him at home. So they came, she was a woman, she came and found me with him, and they tested him and found that he is negative, and she taught us” (30 years old, in relationship 14 years). Finally, a woman living without HIV explained that she felt that HCWs focus on the partner who is not living with HIV and provide them with support. She explained that HCWs, “…put their mind on the negative partner, is the one they encourage even if you want a child. You find the best way to conceive without being infected” (31 years old, in relationship 12 years). By first providing support to some couples during HIV disclosure, HCWs became an important and trusted support to the couple. This appears to have then helped couples to feel comfortable approaching HCWs when they wanted to have children.

While stigma from HCW was rare, some participants reported anticipated stigma or enacted stigma from HCWs. More men than women, regardless of HIV status, feared stigma from HCWs, while most women believed that HCWs would provide them with support. One form of anticipated stigma that participants described was fearing disappointment from HCW. These feelings were described mostly by men. One man living with HIV shared that he did not think that HCWs were happy when sero-different couples had children. He explained, “…I don’t think they feel good because it’s like dragging behind for a community if someone is infected while the other is not infected” (29 years old, in relationship 5 years). His wife felt that HCW would have concerns about HIV transmission to infants. She said, “Healthcare provider is much concerned about these children so that they don’t have the same problem [having HIV]” (23 years old, in relationship 5 years). Anticipated stigma from healthcare providers seemed to often be tangled up with internalized stigma among people living with HIV.

Sometimes there was disagreement within couples about whether HCWs were a source of stigma. For example, in one couple, a man living with HIV described his experience of stigma from a HCW around receiving his ART medications in a public space. Alternatively, his wife felt the HCW would be helpful and supportive and described how providers focus on negative partners with the intent to prevent transmission. However, despite some within couple disagreements, for most participants in this study who are making reproductive health decisions, HCWs appeared to be a source of information and resources.

Discussion

Among mutually disclosed, sero-different couples in Kenya who desired to conceive, we found that in line with the social ecological model (Bronfenbrenner, 1979), participants experienced stigma at various levels. Among couples affected by HIV, despite anticipated and enacted stigma, there was little evidence of internalized stigma; however, people living with HIV feared HIV transmission to partners and infants, rooted in their own sense of emotional responsibility to partners and infants. Furthermore, while delays in HIV status disclosure had created some challenges in relationships, most couples experienced support and acceptance from each other. At the community level, participants described enacted HIV-related stigma from community members, which furthered experiences of anticipated stigma. At the health systems level, perceived or enacted stigma from HCWs was also rare, and participants shared the importance of education, support, and access to services provided by HCWs. While interventions that address HIV stigma at the community-level are warranted and valuable, support from partners and education and support from HCWs may also help couples overcome community stigma. These findings provide greater insight into sources and types of stigma that sero-different couples experience while navigating a desire to conceive and the effect this stigma may have on seeking safer conception services.

In this study, in which prior disclosure of HIV status within the couple was a criterion for inclusion, stigma within the dyad at the interpersonal level, was rare, and most participants described their partner as a source of support. Studies have found that intimate partners can provide critical HIV-related support that can help improve health outcomes, including ART adherence, engagement with HIV care, and reduced experiences of HIV-related stigma (Conroy et al., 2017; Gutin et al., 2023; Hampanda et al., 2021; Hatcher et al., 2020). However, despite feeling supported by their partners, mostly male study participants delayed disclosure of their HIV status to their partners, expressing fears of abandonment. Prior qualitative research from eastern and southern Africa has noted that fears of abandonment are common and often lead to a lack of or delayed HIV status disclosure, specifically among men and pregnant women (Musoke et al., 2018; Nordberg et al., 2020; Okorie et al., 2023; Spangler et al., 2018; Wamoyi et al., 2017). However, disclosure may be key to reducing stigma among couples. For some participants in this study, HCWs and couples’ HIV testing and counselling offered support and an opportunity to address disclosure and provide education.

Within couples, many expressed a concern for HIV transmission to children and partners who were not living with HIV. While fear of HIV transmission is a valid concern, it is deeply linked with the history of the HIV epidemic in sub-Saharan Africa and has its roots in a time before the wide-scale availability of ART when HIV stigma was rampant and pregnancy among people living with HIV was discouraged (Cooper et al., 2009; Ddumba-Nyanzi et al., 2016; Myer et al., 2006). As a result, and despite effective ART and PrEP, fear of HIV transmission remains a concern despite education and resources and may be rooted in internalized stigma (Wagner et al., 2021), although study participants did not discuss their fear of HIV transmission in that way. For those who want to conceive, fear of HIV transmission may be the main reason to seek out HCWs for information and education and may be a motivation to adhere to safer conception methods. Several studies from countries in sub-Saharan Africa have found a desire to engage in safe sexual practices due to fears of HIV transmission (Brown et al., 2023; Conroy et al., 2024; Gitome et al., 2024; Kaggiah et al., 2021; Reed et al., 2021; Spangler et al., 2018). However, more women in this study compared to men expressed fears of HIV transmission regardless of whether they were living with HIV or not. This may be an indication of internalized stigma among women specifically or may be linked to expectations around motherhood, and the drive to reduce risk and protect one’s infant from harm. Our findings highlight the need to address this concern and promote and instill confidence in U=U messaging and the efficacy of safer conception methods to address fears of HIV transmission and address stigma.

In general, at the community level, study participants felt the community was not supportive of sero-different couples having children. Sero-different couples described pervasive stigma from the community that was related to living with HIV, having a partner living with HIV, being seen at clinics collecting medications, or desiring children, regardless of their HIV status. These findings are in line with prior research that has found that community members in Kenya (Breitnauer et al., 2015; Kimemia et al., 2019; Spangler et al., 2018) and Uganda (Kim et al., 2016) often hold negative attitudes about pregnancy among people living with HIV. Prior research has found that a lack of education about HIV, fear of HIV transmission, and moral judgments and assumptions about behaviors that may have led to HIV acquisition are significant drivers of HIV stigma from community members (Asrina et al., 2023; Fauk et al., 2021; Kingori et al., 2017). Community-level stigma may serve to exclude sero-different couples from existing social networks which they might have relied on for social support. Similar to prior research from Kenya (Breitnauer et al., 2015; Kimemia et al., 2019), stigma from community members and relatives often stemmed from fears of HIV transmission and premature death. Our findings suggest that there is still a lack of knowledge about how PMTCT enables sero-different couples to have children without HIV. Also, it appears U=U [undetectable = untransmittable] messaging is not reaching communities, and concerns about HIV transmission may still be fueling HIV stigma. Studies conducted in Kenya examining the impacts of community stigma have suggested that community-based education campaigns (Wanjala et al., 2023) that normalize births among sero-different couples and safer conception method use within community education efforts may reduce stigma (Breitnauer et al., 2015; Kimemia et al., 2019). In addition, educating communities about U=U may be a worthwhile stigma reduction campaign and could be led by people living with HIV, HCWs, or community leaders.

At the health systems level, most participants described support from HCWs, including HCWs facilitating access to medication, and saw them as trusted sources of information. Moreover, most participants did not anticipate stigma from their HCWs because of their reproductive desires. This is a shift from prior literature, which found people living with HIV often did not seek safer conception services because they anticipated and feared stigma and poor treatment from HCWs (Gutin, Harper, Moshashane, et al., 2020; Mmeje et al., 2016). Several couples in this study described how they sought counseling and support from HCWs when they needed help to disclose their HIV status to a partner. As has been reported in other research, HCW guidance may play a role in de-stigmatizing fears of transmission and disclosure (Maeri et al., 2016). People living with HIV also felt encouraged by HCWs to adhere to medication to increase their lifespan and to protect their partners and infants from HIV transmission. While most participants saw HCWs as a source of information and support, some male participants, regardless of HIV status, perceived or anticipated stigma from HCWs related to their reproductive goals. Findings from studies in Uganda have found that the reproductive goals of men as compared to women are not assessed by HCWs as often, and men view services as geared toward women (Matthews et al., 2016; Mindry et al., 2017). It is possible that men in this study viewed HCWs as being unsupportive of their reproductive goals because providers did not routinely ask them about their desires for children, and aren’t regularly engaging with HCWs, especially if they are not living with HIV and are not on PrEP.

This study had limitations and strengths. All study couples had disclosed their status to their partners. Therefore, because the couples in this study weathered HIV disclosure and have stayed together, they may be highly committed, supportive, less likely to stigmatize their partners, and different from sero-different couples in which the person living with HIV has not disclosed their status to their partner. The couples who took part in this study may thus experience less stigma from partners than the general population or couples that have not disclosed and so what is presented here may be the best-case scenario. It is possible that participants may have been voicing socially desirable responses to research questions, in particular about stigma from HCWs. However, the research assistants were not health care providers or linked in any way to the clinics where participants receive healthcare services. We further tried to reduce the possibility of social desirability bias by conducting gender-matched interviews led by local, native-language speaking research assistants. While fisherfolk couples were not involved in the study design or implementation as co-researchers, preliminary results were presented to couples, and they had a chance to provide feedback and correct the team’s interpretation. A more community-engaged approach could have strengthened this research and should be considered in future studies. As this was a qualitative study, no quantitative measures of stigma were collected, but future research would benefit from such data to corroborate these qualitative findings. A strength of this study includes an understanding of HIV stigma from the perspective of the couple while navigating reproductive decision-making. By interviewing both members of the couple separately, participants were free to express their views on their relationship and experiences without pressure from their partner. However, in our analyses, we were able to compare and examine the perspectives of both partners.

Conclusion

Evidence from this study indicates that sero-different couples experience stigma from their communities, which may impact how they seek safer conception support when considering having children. However, we found that couples derive support within their relationship, which may build resiliency and improve health outcomes. HCWs were also a source of support and of safer conception education. Community-engaged interventions aimed at educating community members about U=U and the efficacy of safer conception methods and normalizing pregnancies among sero-different couples may reduce fears of HIV transmission and address stigma at the community level. HCWs can also provide support and guidance with disclosure to partners. Furthermore, gender-specific messaging that addresses HIV disclosure and continuation in HIV care may strengthen adaptive coping strategies against stigma. Future studies should assess the effect of these messages over the course of pre-conception decision-making through the postpartum period.