Introduction

More than 1 million women living with HIV (WLWH) give birth each year, the majority in sub-Saharan Africa [1]. Improved access to lifelong antiretroviral therapy (ART) has led to dramatically lower rates of vertical transmission of HIV [1]. However, this success has also increased the number of children who are HIV-exposed and uninfected (CHEU), a group at elevated risk for poorer physical and mental health, growth, and neurodevelopment compared to their HIV-unexposed counterparts [2,3,4,5,6,7,8,9]. These poorer outcomes are suggested to be the result of in utero HIV and ART exposure and experiences of families affected by HIV [10].

The estimated HIV prevalence among women of reproductive age in Zambia is 13.8% [11], and the vertical transmission rate is less than 1% [12]. In 2021, the Government of the Republic of Zambia committed to goals for the Elimination of Mother-to-Child Transmission. To achieve this, current national recommendations include all pregnant and breastfeeding women with an HIV diagnosis receive lifelong ART, exclusive breastfeeding (EBF) for 6 months, and continued breastfeeding until 24 months or longer [12]. These recommendations are acceptable to pregnant and breastfeeding WLWH in Zambia [13]. However, challenges with ART adherence among pregnant and breastfeeding WLWH have been documented [14], and EBF to 6 months is uncommon among this population [15].

Parents living with HIV may experience health struggles that limit their energy and ability to provide consistent care [16], as well as stigma, limited social support, depressive symptoms, and stress [17], which can negatively affect families and the context for caregiving [4, 18, 19] and increase the risks for poor growth, health, and development among CHEU [3]. Positive caregiving practices—such as responsive parenting, child stimulation (e.g., communication, play), and optimal infant feeding—have been shown to mitigate these risks [4, 20]. Integrated child development and nutrition behavioral interventions have improved responsive parenting, early childhood stimulation, and infant feeding practices, and led to modest improvements in child development and growth outcomes in LMICs [21,22,23,24], but few have focused on CHEU, a population with unique biological and psychosocial challenges [10]. Integrated early child development (ECD) and prevention of mother-to-child transmission (PMTCT) interventions in Malawi [25, 26] and eSwatini [27] have demonstrated positive outcomes for CHEU and WLWH.

Engaging family members to support optimal infant feeding, responsive care and stimulation, and women’s continued ART adherence is a potential strategy to improve outcomes for CHEU and WLWH. Involving male partners can reduce vertical transmission [28,29,30], improve infant feeding [31,32,33,34], and enhance child development [35]. This home-based support is beneficial, but male partners may not be an appropriate or available option for all WLWH, particularly for women without male partners, with male partners who work long hours or work away from home, or if their relationship dynamics are not supportive [36]. Engaging other family members, particularly grandmothers and other female family members who influence care and feeding practices [37,38,39], can increase support and improve caregiving. Increasing adherence support for women living with HIV within families has the potential to improve outcomes for women and CHEU. Comprehensive, family-centered approaches that include optimal infant feeding, responsive care and stimulation, and ART adherence support, and address the specific needs of HIV-affected families are needed [4, 40]. The objective of this research was to assess the acceptability of engaging family members to support WLWH with EBF and ART adherence and participate in responsive care and stimulation practices.

Methods

We used Trials of Improved Practices (TIPs), an iterative, consultative research methodology [41], to examine WLWH and their family members’ experiences with recommended infant feeding and responsive caregiving and stimulation practices, and ART adherence support. TIPs is a participatory formative qualitative research approach that uses data collected during a series of visits to assess and refine health and nutrition recommendations and inform intervention development. During TIPs, participants are interviewed about their current practices and receive tailored counseling to improve those practices. Participants then have time to try the recommended practices, typically 1–3 weeks. After this period, participants are interviewed again to understand their experience trying the recommended practices. As an iterative and participatory approach, TIPS has been used widely to design nutrition [42,43,44,45,46] and other health interventions [47,48,49]. Findings from TIPs can be used to identify challenges, develop strategies to overcome those challenges, and adapt or omit recommendations that are not acceptable to or feasible for participants [48].

Study Population and Sampling

We recruited participants from PMTCT programs at one hospital and one health centre in Lusaka, Zambia. Both offer lifelong ART for pregnant and breastfeeding WLWH. Facility managers identified WLWH who were breastfeeding an infant 1–3 months of age (typically before when infants start to receive non-breastmilk foods and liquids [50]) and we invited them in person to participate in the study. Using a family systems lens [38] and drawing from previous infant feeding support interventions for WLWH [51], WLWH were asked to invite up to two family members (e.g., male partner, other adult family member) to participate as home supporters. WLWH were purposively sampled to reflect diversity in parity and to ensure a variety of family members were selected. Home supporters were then invited to participate. Inclusion criteria for WLWH were 18 years of age or older, attending PMTCT services at a participating health facility, currently breastfeeding, having a child between 1 and 3 months of age, living in Lusaka, and having a male partner and/or other family member in Lusaka who she would like to invite to participate in this study as a home supporter. Inclusion criteria for home supporters were 18 years of age or older and invited by a WLWH who meets inclusion criteria. For both WLWH and home supporters, exclusion criteria were not being available to participate in all visits or reporting a health condition that would prevent them from participating in the full duration of the study or carrying out the recommended infant feeding, child development, or ART adherence practices or support.

Data Collection and Intervention Delivery

Data were collected from the WLWH and home supporters separately. All of the interviews were conducted by six experienced Zambian qualitative data collectors (3 female, 3 male [TFLM, RC, SC, DMH, LM, SS]) trained in TIPs, breastfeeding, responsive care and stimulation, ART adherence, and counseling skills, with guidance from a Zambian TIPs expert (JN). The data collectors did not have a relationship with study participants before the study. WLWH participated in three visits; home supporters participated in two visits (Table 1). Interviewers used semi-structured interview guides informed by TIPs guidance [41] and adapted from a TIPs breastfeeding study that engaged fathers in rural Tanzania [45]. The interview guides were expanded to reflect a wider family systems approach [38] and the urban context in Lusaka (Supplementary material). Table 1 describes the interview topics at the enrollment, counseling, and follow-up visits for WLWH and home supporters. The interview guides included questions about HIV and infant feeding, PMTCT, ART adherence, responsive care and stimulation, early child development, social support, and the influence of the COVID-19 pandemic on infant care and feeding and ART adherence. We prepared an integrated counseling package with counseling cards and key messages from existing materials [45, 52,53,54,55], which reflect evidence-based practices for infant care and feeding [56] and ART [57]. During their training, data collectors piloted the interview guides and counseling materials.

Table 1 Overview of data collection and counseling visits
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During the counseling visits, all WLWH and home supporters, were counseled on recommended EBF, responsive care and stimulation, and ART adherence practices using counseling cards, and also received tailored counseling in response to WLWH’s challenges with recommended practices at enrollment. Before the WLWH counseling visit and the home supporter enrollment and counseling visit, data collectors reviewed WLWH’s enrollment visit with the study team to select which practices, and support for practices in the case of home supporters, they should focus on during counseling. The counseling package was organized by common challenges WLWH experience related to breastfeeding, responsive care and stimulation, and ART adherence (e.g., giving gripe water in response to crying, not talking to baby, not taking ART as recommended), allowing data collectors to tailor counseling. Participants then selected which practices they wanted to try before the follow-up visit.

Data collection took place between June 1, 2021 and September 20, 2021. All participants provided written informed consent prior to participation. Interviews were conducted in the participants preferred language (i.e., Bemba, Nyanja, English), were audio-recorded, transcribed, and translated into English, as needed. Each interview lasted approximately 60–90 min. The interviews were conducted in clinic spaces that provided sufficient privacy or at participants’ homes based on participant preference. Data collectors took field notes during interviews. Zambia- and US-based study team members (i.e., data collectors, data analysts, TIPs expert) met for weekly debriefings throughout data collection. The study coordinator (TFLM; a male Zambian MPH-level HIV researcher) and study principal investigator (SLM; a female PhD-level nutrition researcher and lactation counselor from the US) co-facilitated the debriefing meetings where the team discussed recruitment, participation, interview guides, counseling recommendations, participants’ experiences, barriers and facilitators to recommended practices, and data collectors’ questions. During these meetings we determined we had sufficient information power [58].

Following orders from the Zambian National Health Research Authority, data collection was temporarily suspended from June to August 2021 due to the COVID-19 pandemic. This delayed follow-up visits for some participants and led to loss to follow up for others (Fig. 1).

Data Analysis

We entered participant responses to close-ended questions about sociodemographic characteristics, feeding practices, and choices at each TIPs visit into Ona Data mobile data collection platform (Ona Systems, Nairobi, Kenya). Data were tabulated to describe the sample and summarize participant responses. Six team members (TFLM, HA, OPA, EAJ, MLM, SLM) analyzed interview transcripts thematically, based on the constant comparative method [59] and applied thematic analysis [60]. We read transcripts multiple times to understand emerging issues and inform codebook development. Using Atlas.ti Version 9.0 Windows (Scientific Software Development GmbH, Berlin, Germany), we utilized a hybrid coding approach [61]. We read each WLWH’s and her home supporters’ transcripts together as a dyad (or triad if applicable), first reading each WLWH’s three interviews followed by her home supporter(s)’ two interviews, which allowed us to triangulate the data by comparing responses between WLWH and their home supporters [62]. At least two analysts independently coded each transcript, and we used a consensus coding process to reconcile any differences. Informed by applied thematic analysis [60], we exported code reports, to explore participant experiences with new practices. This was primarily a descriptive analysis that was designed to answer questions related to the acceptability and feasibility of proposed recommendations to practice exclusive breastfeeding, responsive care and stimulation, and ART adherence. Key themes were derived from the data and discussed during frequent team debriefings co-facilitated by the study coordinator and PI. We used the Consolidated Criteria for Reporting Qualitative Research (COREQ) to report our findings (Supplementary Material).

Ethics

The study procedures were approved by the University of Zambia Biomedical Research Ethics Committee, the University of North Carolina at Chapel Hill Institutional Review Board, and the Zambia National Health Research Authority. We also sought permission to conduct the study in each facility from facility managers. Individual informed consent was obtained from each participant prior to any study activities.

Results

Participant Characteristics

Overall, 35 WLWH were approached about the study and 29 agreed to participate; 4 were excluded because they did not have anyone to be a home supporter and 2 had not disclosed their HIV status to their male partner. Of the 29 enrolled, 23 completed all three TIPs visits. In addition, 15 male partners and eight female family members (i.e., WLWH’s mother, sister, cousin, or aunt) completed the first home supporter TIPs visit. Most WLWH selected one home supporter, but three WLWH selected two home supporters (i.e., husband and mother, husband and sister), each of whom reported their spouse/partner traveled often. Three home supporters (i.e., 2 husbands, 1 sister) were lost to follow-up and did not participate in the follow-up visit (Fig. 1). Participant characteristics are presented in Table 2.

Fig. 1
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Participants flow diagram

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Table 2 Participant characteristics and infant feeding practices at study entry
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All participants received counseling about EBF, responsive caregiving, and ART adherence tailored to their circumstances. Participants then chose which recommendations they wanted to try over the next couple of weeks. Table 3 displays the recommendations that WLWH and home supporters chose to try, actually tried, and planned to continue.

Table 3 Counseling recommendations participants chose to try, tried, and planned to continue
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Qualitative results are presented below by counseling recommendation category: engaging family members as home supporters, exclusive breastfeeding, responsive care and stimulation, and ART adherence. Within each category, results are presented by participants’ experiences at enrollment, counseling, and follow-up visits. Common themes related to family support co-occurred across EBF, responsive care and stimulation, and ART adherence. For example, WLWH and home supporters appreciated the inclusion of family members in counseling for EBF, responsive care and stimulation and ART adherence; WLWH received increased support for recommended practices; and WLWH and home supporters reported improved relationships. In addition, the importance of having adequate food for practicing recommendations co-occurred across EBF and ART adherence.

Engaging Family Members as Home Supporters

Perspectives at Enrollment

At the enrollment visit, WLWH reported receiving varying levels of support from male partners and other family members for exclusive breastfeeding, responsive caregiving, and ART adherence, with some receiving a lot of support and others reporting little. Similarly, home supporters reported providing a range of support.

What can I say? Do men even usually give support and so on? No [shakes head]. Nothing. Men rarely give support to things like breastfeeding they don’t even pay attention. When a baby cries the only thing he can say is “breastfeed the baby.” –WLWH, 34 years, married, 4 children.

It’s not ok that we just leave the responsibility to a woman. She is also a human being she also gets tired because you will find the baby crying the whole night and she is just soothing the baby. What do you do? You have to wake up and help her. That is how it is. –Home supporter, husband, 58 years.

Counseling Recommendations

At the home supporters’ enrollment and counseling visit, they were counseled about several ways to provide support to WLWH and to be more involved in child caregiving based on their interview responses. Home supporters were counseled to provide WLWH with encouragement and praise for recommended practices; help soothe, play with, and care for the baby; remind WLWH to take ART; give babies ART; and help with chores and other responsibilities so WLWH have time to breastfeed (Table 3).

Experiences with Recommended Practices

At follow-up, home supporters appreciated being included in the counseling and learning more about infant feeding, responsive care and stimulation, and support for ART.

I like it because while I am teaching her I am also learning And I love the fact that the baby now looks healthy. –Home supporter, aunt, 43 years.

I support her with taking her medication and buying her a variety of foods and playing with the child so we have been following those recommendations very well. –Home supporter, husband, 43 years.

Most WLWH reported receiving increased support from male and female home supporters.

Previously they (her mother and aunts) would give the baby water juice and cooking oil, but now they have stopped. They tell me to express milk for her. And then also rubbing her back sometimes if am not doing it they do it. They also tell me to get medication from the health facility in advance and in good time so that they don’t run out… sometimes I am cooking and its 8:00pm time for me to take my medication they will call me and remind me to take my medication. –WLWH, 19 years, single, 1 child.

I liked it because other husbands don’t help when the baby is giving them problems. So I am happy that he helps. –WLWH, 31 years, 3 children.

Several WLWH and male and female home supporters reported improved relationships, which they attributed to home supporters’ increased involvement.

There are a lot of benefits I am happy that my sister is open that’s one of the benefits that I have seen. She is open with me and tells me about her health. I am very happy with this. –Home supporter, sister, 31 years.

Male partners also reported increased bonding with their baby. Home supporters and WLWH reported that home supporters provided support and encouragement for recommended practices. WLWH and home supporters described how home supporters now care for the baby while the WLWH attended to other household chores or they do chores so the WLWH had time with the baby. Several male partners reported praising WLWH for trying recommended care and feeding practices, which they had not done before.

What was challenging was that you know we men are proud and we always think what we do is always right…My attitude has changed and I am able to praise her. At first it was difficult for me to acknowledge her good deeds but when you came in I started doing that. –Home supporter, husband, 36 years.

I would like to see a situation where couples help each other because the baby belongs to all of them. To my fellow fathers I would like them to be holding and caring for the babies also including all those in a similar situation…if the mother is bathing the baby or maybe she is busy the man must help with other tasks even cooking. –Home supporter, husband, 32 years.

All home supporters, except one, reported trying recommended practices during the final visit. The one home supporter, an aunt, who did not, described wanting to try the recommendations but being very busy with work and not having time. Even though most WLWH mentioned that support was received, a few WLWH and female home supporters described how male partners are often busy with work and are therefore not able to support them with raising the child. In general, however, WLWH and home supporters were positive about engaging home supporters and the changes they experienced.

Exclusive Breastfeeding (EBF)

Perspectives at Enrollment

Almost all WLWH reported challenges to EBF that led to giving other foods and liquids before 6 months. WLWH and home supporters reported that infants received sour milk, porridge, orange juice, tomato juice, water, milk, flavored milk drinks/shakes, and breastmilk substitutes. The most common barrier to EBF WLWH reported was fear of HIV transmission through breastmilk, which led them to breastfeed less often, give other liquids and foods, or plan to stop breastfeeding when the child has teeth to limit the risk.

The way we are in our situation [living with HIV] is very difficult…you’re thinking the way that the baby is breastfeeding she could also become infected so it’s very difficult to breastfeed. –WLWH, 31 years, married, 4 children.

I find myself breastfeeding the baby but worrying for him…that he could get the virus [so] I remove him from the breast…It takes time for me to get back to normal after thinking that I could pass on the virus to him but then when he cries a lot I feel sorry for him and put him back on the breast. But the whole time he is breastfeeding I whisper a prayer in my heart. –WLWH, 25 years, married, 2 children.

Several WLWH reported that advice from healthcare workers, medications they received, and infant testing eased their worries to some extent.

Worrying can be there because of this illness but when we remember the encouragement, we are given at the health facility the important thing is that we should follow the instructions we are given by the doctors if you follow the instructions there is nothing that can worry you taking your medication on time and giving the baby medicine on time. Nothing can worry you. –WLWH, 43 years, married, 5 children.

Several home supporters echoed WLWH’s fears of HIV transmission through breastmilk, while a few others reported helping women overcome their fears and supporting EBF.

Sometimes she is scared when the baby breastfeeds a lot… I encourage her that a lot of people are in this situation [living with HIV] and there are babies that are just ok so just breastfeed your baby and don’t get scared. –Home supporter, aunt, 64 years.

For several WLWH and home supporters self-reported insufficient breastmilk was a barrier to EBF, which resulted in infants receiving other liquids and foods. WLWH attributed not making enough milk to not eating enough; breastmilk production decreasing with time; and infants’ needs increasing.

Breastmilk is never enough and I feel as though the baby never gets full. That is the reason she breastfeeds so often…when a child is full normally there is a time when they get off the breast on their own but for this baby she only gets off the breast when she is sleeping. –WLWH, 43 years, married, 7 children.

A few WLWH and home supporters described home supporters providing encouragement and food to help WLWH who believed their breastmilk was insufficient. Some WLWH and home supporters reported giving gripe water, orange or tomato juice, and cooking oil to infants to relieve infants’ colic pains and excessive crying. WLWH reported giving these liquids despite being counseled by healthcare workers to exclusively breastfeed, often indicating they were advised by grandmothers, aunts, and other family members to give these liquids as a remedy. A few WLWH also noted that being busy or away from their baby made it difficult to exclusively breastfeed. Decisions to give other foods and liquids were influenced by family members and healthcare workers; several participants reported that healthcare workers recommended giving porridge and other foods before 6 months. A few WLWH also expressed confusion with infant feeding recommendations for WLWH, noting the recommendations had changed.

I fail to understand because way back at the hospital they used to tell us not to breastfeed a baby for more than six months but again things have changed. We are being told to breastfeed up to one and a half years or even up to two years though I still don’t understand…it is now confusing. –WLWH, 31 years, married, 4 children.

Counseling Recommendations

At the counseling visit, WLWH and home supporters received tailored counseling to improve infant feeding practices based on the challenges to EBF they reported at enrollment. The most common infant feeding recommendations were: EBF is the safest way to feed their infant, breastfeed more often and for longer at each feed following babies’ cues to increase milk supply, and try other ways (like rocking the baby) to soothe a crying infant without gripe water or other liquids.

Experiences with Recommended Practices

At follow up, nearly all participants described their experience trying infant feeding recommendations positively and enjoyed practicing the recommendations. Almost all WLWH reported not giving any other liquids or foods other than breastmilk since the counseling visit. One woman living with HIV described giving water one time because the baby’s crying “was just too much,” and another noted challenges breastfeeding exclusively while her infant was ill. In general home supporters reported providing support for EBF, but one noted the mother “was complaining that the baby is breastfeeding a lot.” All participants reported planning to continue exclusively breastfeeding until 6 months.

WLWH and home supporters reported the counseling they received helped them feel EBF was safe for infants and reduced their worries about HIV transmission.

…right now my mind is free. Even when breastfeeding him I am feeding him with a free conscience…Its going well because I am enjoying myself and am not pulling him away from the breast like I used to. –WLWH-28, 25 years, married, 2 children.

What I like is the fact that if the child is only breastfeeding as long as the mother and child are taking ART treatment they can’t get HIV. The reason why I was thinking its best for her to stop breastfeeding earlier is because I feared the transmission of the virus to the baby. But you have explained that as long as the mother is taking medication there can be no infection. –Home supporter, husband, 39 years.

A few WLWH also reported that infant HIV testing and maternal viral load testing that they received after the counseling further reduced their worries about HIV transmission through breastmilk.

I no longer have any worries [about EBF]. When I recently went to the clinic they checked my viral load and I was told that the viral load was very low and the virus was not detectable. –WLWH, 35 years, married, 3 children.

When WLWH who reported insufficient milk were asked about their experiences breastfeeding on demand and finishing feeding from one breast before offering the other, WLWH and home supporters reported positive experiences. Several also said they noticed positive changes in their infants’ temperament, sleep, appearance, health, and growth. Many WLWH also reported successfully using alternate ways to soothe crying babies.

Rocking her in the lap didn’t work. Rocking her in my hands didn’t work. Putting her on my shoulder is what worked. Even if she’s crying hysterically you just put her on the shoulder and she stops crying I don’t know what’s on the shoulder whether it’s something she’s looking at I don’t know. –WLWH, 26 years, married, 2 children.

Home supporters described encouraging WLWH to only give breastmilk, which WLWH confirmed and appreciated. A few home supporters also reported buying foods for WLWH to help increase breastmilk production. Male partners reported helping WLWH with other tasks, so they had time to breastfeed, which WLWH confirmed.

Sometimes she complains that she is not able to produce enough milk for the baby. I make sure that there is enough food to boost milk production but also give my wife some money with which she is able to buy certain foods so that she is able to breastfeed nicely. –Home supporter, husband, 46-years.

WLWH who needed to be away from their babies described receiving support from home supporters to express breastmilk.

Previously they (mother and aunts) would give the baby water and juice and cooking oil but now they have stopped they tell me to express milk for her. –WLWH, 19 years, single, 1 child.

One woman living with HIV noted that she now brings her baby to work with her, so she can breastfeed on demand. Another reported that while she was able to practice these recommendations at home, feeding on demand was challenging when she was out in public and could only breastfeed for a short amount of time.

Responsive Care and Stimulation

Perspectives at Enrollment

At enrollment, parents and home supporters discussed a variety of ways they interact with and respond to their infants, such as smiling at them, talking to them, singing to them, tickling them, carrying them, rocking them, and playing with them. Only one participant reported not talking with their baby. When asked if babies could understand before they could walk or talk, most WLWH and home supporters said yes and shared examples of how they know.

If the mother is talking to her child that child will be learning. As you can see right now I am playing with him and he is learning. Even when he cries it’s important to talk to him and play with him. You need to pay attention to his gestures too. –Home supporter, aunt, 64-years.

However, some participants, mostly home supporters, said that babies were too young to understand.

She doesn’t know anything even when she is crying she is just crying without understanding what she wants. –WLWH, 34 years, married, 4 children.

Counseling Recommendations

WLWH and home supporters received tailored counseling to increase responsive care and stimulation practices in response to the behaviors and beliefs they reported at enrollment. Participants who were not already practicing responsive care and stimulation behaviors were counseled to talk to, sing to, smile at, and imitate their baby, as well as provide safe opportunities for the baby to explore and play.

Experiences with Recommended Practices

At follow up, WLWH and their supporters described positive experiences trying responsive care and stimulation practices. Several participants described noticing changes in their infant’s activity and temperament. Almost all participants reported enjoying trying new practices; only one home supporter described the activities with less enthusiasm. WLWH and home supporters who said babies were too young to talk to at enrollment described their positive experiences mimicking infants’ sounds and talking to them.

It went well…it brought joy. When we are the two of us we chat. You have to make a conversation that’s just in your head about what she’s saying and respond to her sounds…Her response was great she was laughing and smiling. –WLWH, 26 years, married, 2 children.

Talking to him he understands. Now he has even started saying “tatata” because I talk to him and also sing songs for him…What I liked about it is the fact that when I am talking to him he keeps on looking at me then he laughs…I used to tell myself that first he should grow up a bit… I have seen changes. –WLWH, 31 years, married, 4 children.

Several participants reported buying or finding toys and other items for their infant to play with. One home supporter reported not trying the recommendation to give objects to the baby to play with because the baby could not sit yet. However, they did show the baby the phone. Several participants reported showing infants phone screens or the television.

Well sometimes I show her the phone because it’s bright and at times I play her a song and she responds with excitement like she wants to grab the phone. –WLWH, 31 years, married, 4 children.

Both male and female home supporters reported talking with WLWH about recommended responsive care and stimulation practices. WLWH and male partners described male partners spending more time with the baby, and several noted increased bonding.

[Her father] likes to toss her around and also talk to her so when she sees him she screams with joy because she is happy to see him and recognizes him…[he] is closer to the baby now compared to back then when he was very distant because he would always say he was either tired or busy but this time around he even takes her for walks so the change is there…[he] finds time to also care for the child. –WLWH, married, 4 children, age not reported.

All WLWH and home supporters reported that they planned to continue practicing the recommendations they tried.

I can see for myself that when I make my baby smile sing him songs and the like he is very happy. That’s why I’ll continue. –WLWH, 27 years, married, 2 children.

ART Adherence

Perspectives at Enrollment

At enrollment, WLWH did not report major barriers to ART adherence apart from a few occasionally forgetting to take pills, challenges taking ART when they did not have food, and experiencing occasional delays with facilities providing medication. Only three WLWH reported not taking ART as recommended. WLWH reported that accepting their HIV status, encouragement from husbands and clinic counselors, and knowing they are undetectable facilitated high ART adherence. Participants were motivated to maintain adherence since they believed that the medication improves their health and makes them stronger.

The way I see it there is nothing difficult about it. I see taking medication as a good thing compared to not taking medication…because when you have the virus there are a lot of health challenges …When you take your medication as required and follow the instructions from the clinic those health challenges go away. –WLWH, 31 years, married, 2 children.

Similarly, WLWH did not report any significant challenges for giving infants ART medications. They were encouraged by the health facility to remain adherent with infants’ ART. Some WLWH also shared that fathers and other family members supported baby ART adherence by providing reminders or giving the baby medicine.

Counseling Recommendations

WLWH and home supporters received tailored counseling to improve ART adherence. WLWH were encouraged to try strategies to serve as reminders, including setting an alarm. Home supporters agreed to try encouraging and reminding WLWH to take ART every day and to remind them about or administer ART to the baby.

Experiences with Recommended Practices

At follow up, WLWH reported appreciating the recommendation to use an alarm as a reminder to take ART, and described increased reminders, encouragement, and support from home supporters.

I am saying this because you have included my family. You didn’t exclude my husband who is not on this medication. No instead you included him. For me I never even thought of using an alarm I never used to set an alarm but now it has helped me…you have educated me and I have learnt that … I should not skip any tablets. I need to take my medicine at the right time and my child can’t be infected. –WLWH, 31 years, married, 2 children.

WLWH also noted improvements in their relationships with their male partners and other family members because of the additional support for ART adherence. Several male partners reported they had become more involved in administering ART to the baby and checking with WLWH to be sure babies had received it.

That one for giving the baby medicines since he comes early now before the time for giving the baby medicine. He reminds me or helps… If he comes back a bit late and finds that I have already administered the medicine he will still ask and find out if I have done so. –WLWH, 27 years, married, 3 children.

COVID-19 Influences

Participants were asked how COVID-19 had affected their care and feeding practices and ART adherence. Several WLWH noted changes to their own or their husband’s work because of COVID-19 restrictions, leading to less money and less food. All participants said that their ART adherence had not been affected by COVID-19. Participants overwhelming reported that their infant care and feeding practices had not been affected by COVID-19, though a few mentioned being afraid their child would get COVID-19 or worried about how they would feed their baby if they had COVID-19. One noted precautions she took after being exposed to COVID-19.

Before breastfeeding her because I was exposed [to COVID-19] I wipe my breasts with a wet face cloth then I wash my hands before feeding. –WLWH, 26 years, married, 2 children.

Discussion

In this qualitative study, we found it was acceptable to engage family members to support WLWH through tailored counseling about EBF, especially fears about HIV and EBF; responsive care and stimulation practices; and ART adherence. Results highlight that integrating multiple recommendations and increasing home-based support can provide WLWH with holistic support to practice optimal care and feeding practices and improve adherence. Further, WLWH appreciated the increased support and home supporters valued being included.

WLWH asked family members to participate in the study as home supporters; more than half chose their male partners while the others chose female family members. While male partners are often included in PMTCT programs, for some WLWH, male partners are not a suitable, available, or safe option. For example, in our study a few women reported that their male partners were not able to provide consistent support because of their work schedules, similar to findings from Kenya [63]. Encouraging WLWH to choose home supporters that best meet their individual needs and circumstances has the potential to result in greater support. Female family members, and particularly grandmothers, are widely recognized for their influence on child care and feeding practices globally [37] and in Zambia [64], both through direct care and feeding and their role as trusted advisors. Research in Southern Africa has demonstrated that female family members can be engaged to support HIV and infant feeding [65] and that grandparents can play a facilitative role in HIV disclosure and treatment [66], but HIV programs have not engaged them [67]. Using a family systems lens when designing interventions to support WLWH and CHEU can ensure the most appropriate people are engaged.

Despite awareness of recommendations to exclusively breastfeed for 6 months, few WLWH in our study were practicing EBF at enrollment. WLWH face unique challenges to EBF [68, 69]. Fears of HIV transmission through breastmilk were widespread among our study participants and persisted even with access to lifelong ART and high ART adherence, which dramatically reduces the risk of transmission. Since the introduction and scale-up of Option B+, others have found that fear around transmission continue even with access to ART [70]. Among study participants, women reported less fear after tailored counseling and support, and some reported feeling less afraid after results of viral load testing. Ensuring WLWH have access to timely, tailored, and supportive counseling that addresses their fears around HIV transmission through breastfeeding is critical for PMTCT services. More frequent viral load testing may be a potential strategy to further address WLWH’s fears. Confusion around infant feeding and HIV recommendations due to changing information from health care providers also contributed to the early introduction of other liquids and foods. Nduna et al. [71] reported how changing and confusing messages about HIV and breastfeeding can negatively influence EBF. Horwood and colleges [68] noted that health care providers’ infant feeding messages were often out-of-date and did not address the barriers WLWH experienced related to EBF. Our findings highlight the importance of tailored counseling to address WLWH’s specific fears and barriers, as well as training for health care providers to ensure they provide up-to-date information.

Among participants, perceptions of infant crying led to the cessation of EBF in two ways. First, WLWH attributed infant crying to not having enough milk and subsequently introduced other foods and liquids. Self-reported insufficient milk is a common barrier to EBF globally [72] and in sub-Saharan Africa [69, 73]. Giving other foods and liquids before 6 months remains the norm in many contexts which can exacerbate perceptions of insufficient milk and contribute to mothers feeling disempowered and deficient [74]. Second, for several participants, excessive crying was attributed to stomach pains or colic and families gave gripe water, traditional medicines, or other liquids as treatment, consistent with findings from Tanzania [75]. Participants were counseled to breastfeed on demand to increase milk supply and to try different ways to soothe the baby instead of giving gripe water, traditional medicines, or liquids, which was acceptable to WLWH and other family members. With tailored counseling and household support, participants in our study reported overcoming these barriers to EBF, similar to findings from Tanzania [45].

Even though there is mixed evidence from integrating ECD and PMTCT services, studies have shown that integrated PMTCT and ECD programs have improved parenting skills, increased father involvement, and improved mothers’ relationships with health workers [25, 76, 77]. In our study, several participants described improved caregiving practices and perceived changes in their infant’s activity and temperament. Participants also reported that male partners enjoyed learning about responsive caregiving, actively participated in responsive care and stimulation activities, and experienced enhanced bonding with their infant, consistent with findings from a study in Malawi [78]. Dovel and colleagues [77], observed improved development outcomes among infants who received an integrated ECD-PMTCT intervention. In eSwatini, a nurturing care intervention for mothers of CHEU led to significant improvements in ECD outcomes [27]. These intervention trials highlight the benefits of integrating ECD into PMTCT services.

WLWH reported high levels of ART adherence and motivation to maintain adherence. However, continued counseling and support are needed beyond the postpartum period when adherence starts to decrease [79]. In our study, WLWH reported that home supporters provided ART adherence support, which helped them adhere to their own ART and provide ART to their infants. Treatment supporters have been used extensively to promote adherence to ART [80], including during pregnancy and breastfeeding [81], and can be leveraged to support infant care and feeding practices as well.

Although our study had numerous strengths, we note limitations as well. This study was affected by research suspensions due to the COVID-19 pandemic, resulting in longer periods of time for the follow-up visits and some loss to follow-up. While this delay provided a longer time for participants to try new behaviors, the relatively short time frame limits our ability to assess sustained changes in behavior. The use of qualitative methods allowed us to explore participants’ experiences in depth but was not designed to evaluate the effect of counseling or engaging home supporters. WLWH were encouraged to select a home supporter to whom she had already disclosed her status. We recognize that women who have not disclosed their status may have distinct family situations, which are likely to require different interventions and support. Given the higher rates of perinatal depressive symptoms among WLWH [82] and the negative associations between depressive symptoms and ART adherence [83] and caregiving practices [76], as well as the bidirectional relationship between suboptimal breastfeeding practices and depressive symptoms [84], it is a limitation that we did not assess depressive symptoms and perinatal mood disorders in this study. Finally, data related to participant experiences with new recommendations are based on self-report, which may be subject to recall and social desirability bias. However, more than one person from the household gave an account of trying recommended practices, which allowed us to triangulate responses. In addition, interviewers were trained to build rapport and remind participants that understanding their real experiences was important to the development of future HIV support interventions.

Conclusion

Acceptable family-centered interventions are needed to increase support for optimal care and feeding of CHEU and for WLWH’s own health [85]. Our findings show that including home supporters in counseling and encouraging them to support WLWH was acceptable to both WLWH and home supporters in our study and future interventions should consider integrated infant feeding, responsive care and stimulation, and ART adherence counseling packages that include home supporters. To improve sub-optimal infant feeding practices, WLWH need support and tailored counseling to address their fears around HIV transmission and self-reported insufficient milk. It is especially important to engage family members based on WLWH’s preferences, designing interventions that consider all family members and not only male partners. Providing WLWH and their family members with tailored counseling to support optimal infant feeding, responsive care and stimulation, and women’s continued ART adherence is a promising strategy to improve outcomes for CHEU and WLWH and strengthen PMTCT programs.