Women’s Experiences of Infant Feeding Practices While Living With HIV in Malaysia: A Community-Based Qualitative Study

Study Tool

The interview and focus group guide (see the online Supplemental Material) was pilot tested in a focus group discussion involving five participants. The guide for interviews and focus group sessions consisted of the same open-ended primary and probing questions. Although the interview guide covered the participants’ postnatal experiences, this study focused solely on the challenges faced during participants’ infant feeding experiences. Questions on past experiences were necessary to foster a deeper discourse and understanding. The interview started with general inquiries, including “How did you find feeding your baby?” and “What was your experience with obtaining adequate information on how to feed your infant?” Based on the responses given by the participants, probing questions were asked to attain a deeper understanding, for instance, “What feeding options were available to feed your infant?” and “Were you provided with information, space, and time to consider your options for feeding?” Further probing questions were asked, if necessary, for example, “How do you feel about the support given to you in feeding your infant?”

The corresponding author is an International Board Certified Lactation Consultant (IBCLC) who is passionate and actively involved in advocating and promoting human milk. She found it regretful that women were not empowered to make decisions based on their understanding and preferences. However, as a qualitative researcher, she remained professional and ensured her preference did not influence the analysis by applying the bracketing technique, which is a qualitative research technique used to reduce the potential negative effects of assumptions on the research process (Tufford & Newman, 2012).

Breast is bad

As early as during antenatal clinic follow-up visits, participants were counseled by the HCP to feed their infant with HMS. One participant said, “The specialist has already told me even since my pregnancy that I cannot breastfeed. . . . they have already explained everything” (Respondent 44, Session 14). We discovered that the explanations provided to the majority of participants were similar, and that the HCP thoroughly addressed the possible risk of viral transmission through human milk.

One narrative demonstrated how the possibility of viral transmission was a concern to the HCP. The participant said, “Yeah, [I] wasn’t allowed to breastfeed. . . . They [HCP] were afraid that if I were to breastfeed, the baby would get the infection” (Respondent 50, Session 16). Many women would only consider giving their child human milk if the doctor could confirm that there ws no risk of transmission. One participant stated, “If there truly are no risks, I would give human milk. If it’s 50/50, it’s better to give formula milk.” (Respondent 51, Session 16).

Unwillingly agreed to use HMS

The participants were reminded after they gave birth to only give HMS to their infants by the HCP. According to one respondent, “After delivering my child, they said again that [I] couldn’t breastfeed my child. . . . I couldn’t” (Respondent 60, Session 18). This reminder was emphasized to other participants, too. Another participant noted, “They’ve already said that I can’t breastfeed, I have to give formula milk. . . . They explained it after delivery; before delivery, too, they explained it as well” (Respondent 53, Session 16).

Not all participants accepted this advice. In many cases, the participants felt that they had no choice but to reluctantly agree, which made the participants feel disappointed. One participant said, “After that, I can’t breastfeed. At times, I felt quite sorrowful, because if I could, I wanted to breastfeed my child, you know” (Respondent 61, Session 19). One participant provided an interesting explanation for why human milk was discouraged in Malaysia,

They said that Malaysia doesn’t approve of it, doesn’t approve of breastfeeding. [It is] not encouraged unless for countries with dirty water, like unsanitary water, like Africa, [where] even though the mother has HIV, it’s encouraged—encouraged to breastfeed. With this, yeah, with treatment that’s available, you know. If there’s compliance with all the medication, they allow it. But in Malaysia, it’s like not, not encouraged to breastfeed, and the government provides the formula milk. (Respondent 61, Session 19)

It is not so bad, after all, it’s quite convenient

Participants without any breastfeeding experience were more receptive to the idea of giving HMS to their infants. One participant stated,

I’m not really picky between the two because the baby. . . . If I were to leave for work, it would be a bit tricky because it’s a bit tough to . . . leaving them is tough. If they are bottle-fed, when there is some work outside [for me], it would be easier like that. (Respondent 58, Session 17)

Another participant preferred to give mixed feedings, if allowed, as it would give her more flexibility when doing her chores. She said, “I would probably mix breastfeeding and formula; but, you know, for me, giving formulas is quite easy as well. So, like, I can sleep at night . . . so like alternating turns [care for the baby]” (Respondent 56, Session 17).

One participant was more receptive to the idea of providing HMS after she did her own reading. She was convinced that HMS was the best option for her infant, “because I did read and open some books about these things . . . so the doctor said . . . it’s okay, I said, rather than the baby being in pain, it’s better that I face it, I accept it” (Respondent 59, Session 17).

Suppression of lactation

In order to avoid breast engorgement after giving birth, lactation suppression medication was provided to many of the participants. One participant mentioned, “When in the ward after giving birth, they gave one pill . . . that pill was supposed to stop the production of human milk” (Respondent 43, Session 14). For many participants, two doses were sufficient to complete the suppression and prevent engorgement. However, not all postnatal participants were prescribed lactation suppression medication. There were a few instances where the participants needed to request lactation suppression medication because they experienced breast engorgement. One participant said,

For the first birth, they automatically gave me medications to stop [milk production] after delivery. For the second delivery, I am not so sure if it was because of COVID or what, I believe they must already know, you know. . .. So when they didn’t give the medication . . . I requested it . . . because my breasts were already engorged at that time. It was very painful as I also did not get to prepare with a breast pump. (Respondent 5, Session P)

For those who were given the medication, not all of them found the medication effective. One respondent noted, “There was [when I had] my first child, I took it, and the milk didn’t come out. For this second [child], I took it, and the breasts became engorged. There really was a lot of milk that came out” (Respondent 51, Session 16). Some participants with previous birth experiences knew when they needed to express the milk. Such a situation occurred most frequently when participants did not receive the recommended dosage, and their breasts became engorged. According to one participant,

It was supposed to be two tablets, but I said I only got it once . . . and now I did not get the second one. . . . So I told [them] that my breasts were already engorged and I was asking someone at home to send a breast pump . . . to express since using hands is not so effective . . . [it is] a bit hard to do, you know. (Respondent 5, Session P)

Explanation of the preparation of HMS

The HCP explained to the participants the correct technique to prepare HMS. The explanation took place before they were discharged, usually in the wards. The participants were satisfied with the explanation and thought the nurses were good at what they did. One of the participants stated,

[They] taught [me] how to feed with formula milk, you know. . . . They demonstrated how to clean milk bottles, how to boil water, and so on. . . . The way they teach, they said that if you want to touch the baby, you have to first state your name to confirm it is the right baby. With my IC (identification card) and all they said. . . . Then, before touching the baby in the SCN ward, we wash our hands. It was an okay reception, all the services were good. . . . Yes, they insisted on hand washing before touching the baby . . . and each time after changing the baby’s diaper, I have to wash my hands again. . . . Don’t really want anything to . . . you know. (Respondent 70, Session 22)

Participants who had previous experiences were better prepared and brought feeding bottles to the hospital after learning that they would need to feed their babies with HMS. A respondent shared her conversation with an HCP,

But I already brought a milk bottle. I already brought it. Oh, the bottle is in the ward. Oh, why didn’t you say so, go and take the milk bottle, it’s okay, I’ll teach you how to give the milk and all. (Respondent 71, Session 22)

Previous breastfeeding experience

There were participants who had experienced feeding human milk to their children before they were diagnosed with HIV. One of them said, “My first through seventh children were all breastfed before I had my eighth child” (Respondent 47, Session 15). If given a choice, those participants with previous breastfeeding experience would prefer to breastfeed their infants. One participant mentioned, “At the very least, human milk is beneficial to the baby, as well as to our own children” (Respondent 54, Session 16).

One participant was remorseful that she could no longer provide human milk for her infant; still, she tried to rationalize her situation,

Because, after all, it’s human milk . . . a bit painful, but there are pros and cons. . . . I think one pro of bottle feeding is that when the baby is done, they throw it away and fall sleep hahaha [laughs] something like that. (Respondent 46 Session 14)

On the other hand, there was a case where a participant, unaware of her HIV status at the time, was upset that she had transmitted the virus to her child through breastfeeding. Moreover, she believed she could have avoided this if she did not breastfeed her child,

After that, I can’t breastfeed. At the time, I was a bit upset, you know, because if we could, we want to . . . want to breastfeed our children. But umm, when I recalled my late child, I thought, perhaps his condition worsened because of the breastfeeding, you know. I only felt regret in that regard. The bonding between mother and child feels halted, but, as I said, if my fortune lies after this, it’s okay. For the sake of my child’s health, to prevent them from getting HIV, I understand why, you know, why I can’t breastfeed and all that. (Respondent 61, Session 19)

Expectation as a mother by society

Breastfeeding is a common practice in Malaysia. Generally, a woman is encouraged to initiate breastfeeding and maintain it as long as they are able to. A few participants had experienced being asked why they did not breastfeed their newborn. One respondent felt trapped and had to make up an excuse, “I was afraid to talk at first. I don’t know what to say, but I said I have asthma” (Respondent 52, Session 16). For others, they only gave a simple response, for instance, “Outsiders did ask why I don’t breastfeed. . . . I said I have no milk” (Respondent 50, Session 16). Most of the time, it was harder for the participants to explain it to their families or close friends. One respondent stated,

There are some friends who are really close who like to ask things. They felt weird and asked why my breasts are not engorged? You don’t breastfeed? Then, when you say no, they looked as if they wanted to ask further, but they didn’t say it out [loud]. (Respondent 56, Session 17)

The same respondent was shocked when her sister-in-law suddenly took her infant and started to breastfeed when she said she had no milk, “I have a sister-in-law who offer her breast to my son. I’m angry. Why?” (Respondent 56 Session 17).

Provide human milk anyway

Participants were well aware of the benefits of breastfeeding for their infants. They found ways to ensure their infants got human milk even if they could not breastfeed their infants. In contrast to the priorly discussed experience, one participant’s husband asked her sister-in-law to feed her newborn. It was her husband’s wish that the newborn would get human milk. She said,

My husband really hoped that our child can get human milk. But I said, I can’t breastfeed. We have to accept it. But then he asked my sister-in-law, she is the one who gives milk, she breastfeeds. Alhamdulillah [praise be to God], she is the wet nurse. (Respondent 65, Session 21)

Difficulty in accessing HMS

In many cases, the participants had to claim the free supply at the healthcare facility nearest to their homes. One participant stated, “Since my child was discharged from the ward, until 6-month-old, [I] had to pick it up at the nursery, and then, after 6 months, they said [I have] to take it from a children’s clinic near a general hospital” (Respondent 43, Session 14). Similarly, another respondent said,

The milk given by the hospital [is for]. . . 2 years. . . quite easy. . . . Every month they tell me to visit the health clinic. . . . They tell me to come and get [the formula milk]. When the milk runs out, just come over and take some. (Respondent 45, Session 14)

However, in certain circumstances, particularly owing to geographical restrictions, some women are required to travel long distances. This was not feasible for some participants. One participant mentioned, “They didn’t even give formula milk . . . because they said if I still wanted formula milk, I had to go to Tawau, and my child had to move to Tawau” (Respondent 2, Session P). Because the HMS product was occasionally out of stock, several participants had trouble obtaining it. However, with the assistance of a community organization member, the issue was resolved. One respondent revealed,

I went, and they said the formula milk has not arrived yet. . . . When I went the next month, the milk still hasn’t arrived yet . . . so I said that for the next 3 to 4 months, we’d have to buy our own milk. . . . I called [a man], who is the person in charge of an NGO. He then called an HCP. They conversed, and, that evening, I immediately got my formula milk. (Respondent 50, Session 16)

Unsuitable HMS for infant

The provision of HMS is restricted to only a single brand (due to the contractual agreement of the service provider), with no substitute brands available if the babies suffer any ill effects. One participant stated, “My child now can’t drink that [formula brand] milk. So, I don’t take that milk because my child will get diarrhea” (Respondent 4, Session P). Another participant shared that her infant experienced very bad constipation that required medical assistance,

My baby drank it, and his stool became very hard. He couldn’t defecate. And we had to, like, pick it out every day. After that, I brought my child to the hospital, stayed there for around 4 days, and they inserted some medication to remove all the stool. After that, I didn’t go to the health clinic to get any milk anymore. (Respondent 60, Session 18)

As a result, participants resorted to purchasing their own formula milk to be able to feed their babies.

If the participant needed another product or brand, they would have to purchase it. One participant said,

My child was unsuitable at first [for this formula milk]. After that, I changed to [another brand], a bit more expensive, to give the child strength and higher calcium, so I changed milk. But the one that the clinic gave, I still give [to my child], alternatingly. (Respondent 42, Session 13)