矛盾的嬰兒餵食指導讓媽媽們感覺自己錯了，無論是用奶瓶餵食還是母乳餵養

Felicia Bamgbose / 2024 年 6 月 13 日 / 愛滋病地圖

在決定如何餵養出生後的孩子時，英國感染愛滋病毒的婦女面臨複雜的決定，因為醫療機構的指導方針相互矛盾。這些女性更有可能是第一代或第二代移民，通常來自黑人社區，45% 的人生活在貧困線以下。這些女性因愛滋病毒而面臨恥辱和歧視，再加上她們的種族和社會經濟背景，使得參與醫療保健充滿挑戰。 Tanvi Rai 博士和她的同事想了解這群婦女的生活經歷，因此採訪了感染愛滋病毒的孕婦和產後母親，並了解她們餵養嬰兒的經歷。他們在婦女研究國際論壇上發表的文章得出的結論是，可悲的是，英國對這些婦女的指導似乎「注定她們無法做到『對孩子最好的事』」。

2021 年和 2022 年，我們訪問了 36 名感染愛滋病毒的順性別女性，了解她們的愛滋病毒狀況以及嬰兒餵食和懷孕的經歷。在這些婦女中，有八名目前已懷孕，五名在最近一次懷孕期間（而不是受孕前）被診斷出患有愛滋病毒。對於大多數女性來說，她們的愛滋病毒感染狀況為她們的親密關係和醫療保健提供者所知曉，儘管有兩名女性報告說，她們目前的伴侶並不知道她們的感染狀況。許多人多年來與愛滋病毒專科臨床醫生建立了密切的關係，但在懷孕期間與其他醫療保健專業人員的互動也有所增加。

哺餵母乳

世界衛生組織 (WHO) 在資源匱乏地區的使用指南建議感染愛滋病毒的母親進行純母乳哺育。這是因為在這些環境中，配方奶餵養時水受污染的風險超過了愛滋病毒垂直傳播的風險，據估計，對於未接受愛滋病毒治療的婦女來說，垂直傳播的風險約為 14%。與許多其他國家一樣，英國的普遍訊息是「母乳是最好的」，81% 的新媽媽嘗試母乳餵養，儘管這一比例在 6 個月後下降至 1%。

但這與大多數高收入國家針對愛滋病毒感染者的專家指南形成鮮明對比，英國愛滋病毒協會 (BHIVA) 建議感染愛滋病毒的婦女避免母乳餵養，即使服用愛滋病毒藥物病毒載量無法檢測到的人也是如此。直到 2010 年，由於對嬰兒構成風險，任何在這種情況下進行母乳哺育的婦女都會被轉介至社會服務機構。對於許多來自非洲和亞洲國家的移民婦女來說，這變得令人困惑，因為她們家鄉的家人和醫療保健提供者給出了完全不同的建議。

一位受訪者表示她很難理解這項建議，特別是因為醫療保健提供者往往沒有給予足夠的解釋：

「據我所知，非洲和世界其他地區的人們被建議母乳喂養，而如果你在這裡，他們會為你提供配方奶餵養的選擇。那麼世界的這個部分和世界的那個部分有什麼區別呢」？

2018 年，BHIVA 指南發生了變化，儘管配方奶餵養仍被推薦為最安全的選擇，但可以支持感染愛滋病毒的女性進行母乳餵養。前提是該婦女的病毒量無法檢測到，並且至少每月對母親和嬰兒進行血液檢測，否則仍可能導致轉介至社會服務機構。廣泛的追蹤可能會讓新媽媽們感到非常痛苦，但一位女性描述了她如何在家人和愛滋病毒團隊的支持下堅持下來，「母乳餵養是我從阿姨、表兄弟姐妹和家人那裡看到的一切，這就是我所看到的一切」。

在這些情況下傳播的責任也被認為由母親本人承擔，因為 BHIVA 更喜歡配方奶餵養。一位參與者解釋了她的感受：

「最終發生的事情是，每一位母親，無論這種風險有多麼微不足道，都會內化這樣一個事實：像這樣的選擇仍然可能以某種方式導致那樣的結果……很多很多母親都會讓自己保持如此高的水平，就像我覺得如果那樣的話下發生這種情況，他們的餘生都會受到懲罰。

確實選擇母乳餵養的愛滋病毒感染者母親描述了醫療保健專業人員的選擇和判斷的許多其他障礙，這通常是由於非愛滋病毒專家對正確指南的誤解或無知。一位母親本來打算母乳喂養，但當她的孩子早產時，她把泵出來的母乳帶到重症監護室，護士們把它扔掉了。

他們認為她們不被允許給予。

「我對自己感到非常失望，我讓她經歷了這一切，當你看到其他媽媽為他們的嬰兒服用它而在那裡吸奶，並在他們的貼紙上貼上他們的名字，把他們放進冰箱時，我讓她經歷了這一切，而對我來說，我做不到。

另一位母親用奶瓶餵養她的第一個孩子，但經過廣泛研究後選擇母乳餵養她的第二個孩子，有了以下互動：

「當我與兒科醫生會面時……她實際上已對我說道，你知道，『如果這無法實現，你不需要對此非常固執』……我說，『我已經做了我的研究，我知道事情並不容易，但我已經準備好盡力而為，當然我不會[嗯]我，我不-，」我說，「我-」好吧，我說， 「我會-」，「我不，我想我甚至沒有回應關於不固執的評論」。

作為一名受過良好教育的女性，擁有白人伴侶和較高的社會經濟地位，她覺得自己能夠在這一說法上挑戰她的兒科醫生，而許多女性，包括先前早產兒的母親，並不具備這種能力。

配方奶餵養

值得注意的是，在許多黑人和棕色人種社區，奶瓶餵食受到高度侮辱，因此在這些社區這樣做可能會意外洩露母親的愛滋病毒感染狀況。一位女士描述說，她的「非洲父母對我很關心」，因為他們不知道她的身份，所以如不進行母乳喂養，這造成了很多困難，特別是在全家去西非度假時給她的孩子餵奶時，家人不斷質疑為什麼她沒有哺乳。對某些人來說，擔心透露自己的身分也意味著避免參加愛滋病毒母親支持小組，而這些卻對她們的心理健康非常有益。

有些女性在配方奶餵養方面遇到困難，因為她們對自己的愛滋病毒感染狀況感到羞恥，並且對感染愛滋病毒感到內疚。配方奶餵養價格昂貴，對某些女性來說會產生羞恥感，感覺自己不像母親：

「我知道這聽起來很愚蠢，或者聽起來很自私，但我認為這確實會影響那種最初的聯繫過程。因為任何人都可以餵他，就像他想要牛奶一樣，任何人都可以給他牛奶，就像不僅僅是我一樣……他甚至不知道我是他的媽媽」。

「我不想用奶瓶餵食。我不在乎它們是免費的瓶子，我不在乎免費的牛奶。對我來說，我只是想與我的孩子建立這種聯繫」。

一位女性描述了她如何決定不母乳喂養，儘管她的愛滋病毒團隊與她討論了這個選擇：

「我生產奶水是為了給我的孩子營養和食物。如果存在可能被污染的可能性，或者[嗯]不給孩子提供營養，或者在提供營養的同時還提供其他東西，那麼我個人並不想冒這個風險」。

結論

儘管英國嬰兒餵食指南似乎為感染愛滋病毒的母親提供了選擇，但她們的實際經歷卻描述了困難且常常孤立的決定。醫療保健專業人員強烈鼓勵女性用奶瓶餵養，這在普遍提倡母乳餵養的社會中引發了許多問題。選擇母乳哺育的愛滋病毒感染婦女必須同意接受密集的臨床監測，並因垂直傳播的風險而面臨恥辱態度，而對這些婦女更廣泛的文化因素以及精神和身體因素的考慮則被忽視。無論是奶瓶餵養還是母乳餵養，女性都被認為是「壞」母親。

為了解決這些問題，研究人員建議需要進行更細緻的諮詢，以充分解決國際和國家指南之間缺乏一致性的問題。需要滿足個別患者的情感和文化需求。此外，需要對嬰兒餵食的實際方面提供更多支援。

他們的結論是，「需要承認英國和全球指南之間的模糊性所帶來的痛苦，我們已經表明，對某些人來說，感染愛滋病毒者餵養嬰兒（無論是母乳還是配方奶粉），是經歷一種越界違法的行為」。

參考文獻：Rai T et al. 「於英國在愛滋病毒背景下，嬰兒餵食是越界違法的行為：一項質性訪談研究」。婦女研究國際論壇 101：102834，2023（開放取用）。

Mothers living with HIV feel like there is no right choice when feeding their babies

Contradictory infant feeding guidance leaves mothers feeling like they are wrong irrespective of whether they bottle or breastfeed

Felicia Bamgbose / 13 June 2024 / aidsmap

When deciding how to feed their children after birth, women living with HIV in the UK face complex decisions due to contradicting guidelines from healthcare organisations. These women are more likely to be first- or second-generation immigrants, often from Black communities and 45% live below the poverty line. These women face stigma and discrimination due to HIV, compounded by their race and socioeconomic background, making engaging with healthcare challenging. Dr Tanvi Rai and her colleagues wanted to know about the lived experiences of this group of women, so interviewed pregnant and postpartum mothers living with HIV about their experience with infant feeding. Their article published in Women’s Studies International Forum comes to the conclusion that sadly the UK guidance for these women seems to “predestine them to fail at doing ‘what is best for their baby’”.

In 2021 and 2022, 36 cisgender women living with HIV were interviewed about their HIV status and experiences with infant feeding and pregnancy. Of these women, eight were currently pregnant and five had received their diagnosis of HIV during their most recent pregnancy, rather than before conception. For most of the women their HIV status was known to close relations and their healthcare providers, although two reported their current partners being unaware of their status. Many had built close relationships with their HIV specialist clinicians over several years but had increased interactions with other healthcare professionals during their pregnancies.

Breastfeeding

The World Health Organization (WHO) guidance for use in low resource settings recommends exclusive breastfeeding for mothers living with HIV. This is because in these settings the risks of contaminated water when formula feeding outweigh the risks of vertical transmission of HIV, which is estimated to be about 14% for women not on HIV treatment. As in many other countries, the general message in the UK is that ‘breast is best’ with 81% of new mother’s attempting to breastfeed, although this drops to 1% by 6 months.

But this is in stark contrast to specialist guidelines for women living with HIV in most high-income countries, with the British HIV Association (BHIVA) recommending that women living with HIV avoid breastfeeding, even if taking HIV medication with an undetectable viral load. Until 2010 any women who breastfed in this context were referred to social services due to the risk posed to the infant. For many of these women who are migrants from African and Asian countries this becomes confusing, as their family and healthcare providers back home are giving completely different advice.

One interviewee expressed the difficulty she had in understanding this advice, particularly as healthcare providers often did not give sufficient explanations:

“I understand that people in in Africa and those parts, that part of the world they are being advised to breast feed whereas if you’re here they give you the option to formula feed. So what is the difference between this part of the world and that part of the world?”

In 2018, the BHIVA guidelines were changed so that while formula feeding is still recommended as the safest option, women living with HIV can be supported to breastfeed. This is only if the woman’s viral load is undetectable and with at least monthly blood testing for mother and baby, deviation from which could still result in referral to social services. The extensive follow up can be very distressing for new mothers but one woman described how she persevered with support from her family and HIV team as “breastfeeding [is] all I’ve ever seen from aunties, cousins, family, that’s all I’ve ever seen.”

Responsibility for transmission in these circumstances is also deemed to lie with the mother herself as formula feeding is preferred by BHIVA. One participant explained how this made her feel:

“What ends up happening is that every mother regardless of how negligible that risk is will then internalise the fact that like this choice could still somehow lead to that… Many, many mothers they would hold themselves to like such a high, like I feel like they’d be punishing themselves for the rest of their life if that happened.”

Mothers living with HIV who did choose to breastfeed described many other barriers to that choice and judgement from healthcare professionals, often due to misunderstandings or ignorance of correct guidelines with non-HIV specialists. One mother had planned to breastfeed but when her baby was born prematurely and she took the milk she pumped to the intensive care unit, the nurses threw it away as they believed they weren’t allowed to give it.

“I felt really disappointed in myself that I put her through this and I let her go through this when you see other mummies there expressing and taking it for their babies, put their stickers name on them, put them in the freezer and for me I can’t do it.”

Another mother who had bottle fed her first child, but then chose to breastfeed her second child following extensive research, had the following interaction:

“During my meeting with the paediatrician… she had actually said to me that, you know, “If this doesn’t work out you need to not be very stubborn with it”… I said, “I’ve done my research, I know that things, it’s not easy but I’m prepared to sort of try my best and of course I’m not gonna [um] I I don’t-,” I said, “I-“ well I said, “I would-“, I don’t, don’t think I even responded to the comment about not being stubborn.”

As a well-educated woman, with a White partner and high socioeconomic status, she felt able to challenge her paediatrician on this statement, while many women including the previous mother whose baby was premature, do not have that ability.

Formula feeding

It is important to note that in many Black and Brown communities bottle feeding is highly stigmatised, so doing so in these communities carries a risk of accidentally disclosing the mother’s HIV status. One woman described how her “African parents were all over me” for not breastfeeding as they were unaware of her status, which created a lot of difficulty, particularly when feeding her baby on a family holiday to West Africa, with family members constantly questioning why she was not breastfeeding. For some the concerns about disclosure of their status also meant avoidance of support groups for mothers with HIV, which could have been hugely beneficial to their mental wellbeing.

Some women struggled with formula feeding because of the shame around their HIV status and perceived guilt in acquiring HIV in the first place. Formula feeding is expensive and for some women carries a sense of shame and feeling like less of a mother:

“It sounds so silly or it sounds so selfish I know, but like I think it does affect that sort of initial bonding process. Because anyone could feed him like he wanted milk and anyone could give that to him like it wasn’t just me… he wouldn’t even know that I was him mum.”

“I did not want to bottle feed. I didn’t care about they are free bottles, I didn’t care about the free milk. For me I just wanted to have that bond with my child.”

One woman described how she decided against breastfeeding, despite her HIV team discussing the option with her:

“I produce milk to be a nutritious and food for my child. If there is a possibility that that could be tainted or [um] not give the child, the nutrients, or alongside giving the nutrients give something else, it’s not a risk that I personally would want to take.”

Conclusion

Although the UK guidelines for infant feeding seem to offer choice for mothers living with HIV, their actual experiences describe difficult, often isolating decisions. Women are strongly encouraged to bottle feed by healthcare professionals which leads to many questions in a society that generally promotes breastfeeding. Women with HIV who choose to breastfeed must agree to intensive clinical surveillance and face stigmatising attitudes due to the risks of vertical transmission, while wider cultural factors and mental and physical considerations for these women are ignored. Women are being made to feel like ‘bad’ mothers irrespective of whether bottle or breastfeeding.

To combat these issues, the researchers suggest that more nuanced counselling is required that fully addresses the lack of consistency between international and national guidelines. The emotional and cultural needs of individual patients need to be addressed. Furthermore, there needs to be much more support for the practical aspects of infant feeding.

They conclude that “the suffering that results from the felt ambiguity between UK and global guidance needs to be acknowledged and we have shown that feeding an infant while living with HIV (whether by breast or formula) is experienced by some as a transgressive act.”

References

Rai T et al. Infant feeding as a transgressive practice in the context of HIV in the UK: A qualitative interview study. Women’s Studies International Forum 101: 102834, 2023 (open access).