Over a third of childbearing women with HIV would like to breastfeed: A UK survey of women living with HIV

Abstract

The World Health Organisation advice for post-partum women living with HIV (WLHs) in low- and middle-income countries is to breastfeed on suppressive antiretroviral treatment and use infant postnatal prophylaxis. In resource-rich settings, where formula feeding is safe, avoidance of breastfeed is advised. A questionnaire was created to survey attitudes to breastfeeding in WLHs in the United Kingdom. This was offered to all eligible pregnant women in the third trimester or within 3 months post-partum who attended HIV outpatient clinics from 2017 to 2018. Ninety-four women completed the questionnaire, 69% were Black African and 92% had an undetectable HIV viral load. Thirty eight percent stated they would like to breastfeed and 89% said they would breastfeed if they were HIV negative. Sixty two percent had community members question why they did not breastfeed, and 66% felt forced to invent a reason why they were not breastfeeding. Current UK guidelines recommend formula feeding, proposing a harm reduction approach to support women with suppressed HIV who wish to breastfeed. Over a third of respondents said they would like to breastfeed because stigma and secrecy remain an issue for WLHs. This suggests that over time more women may choose this option.

Keywords

Breastfeeding pregnancy women living with HIV human immunodeficiency virus

Background

Every year in the United Kingdom (UK), around 1200 women living with HIV (WLHs) become pregnant.¹ Vertical transmission (VT) can occur during pregnancy, birth or breastfeeding. Studies carried out in low- and middle-income countries (LMICs) showed that without antiretroviral therapy (ART), the risk of transmission of HIV through breastfeeding is approximately 16%.² Recent findings from the Promoting Maternal and Infant Survival Everywhere (PROMISE) study showed a 0.7% (95% confidence interval (CI) 0.3–1.4) risk of overall transmission at 1 year, where either the mother was on combination ART or the infant on daily nevirapine prophylaxis (iNVP) continued until 18 months after delivery or breastfeeding cessation, infant HIV-1 infection, or toxicity, whichever occurred first.³ Factors that increase the risk of postnatal transmission include reduced adherence to ART by the mother, increased duration of breastfeeding, presence of mastitis and impaired gastrointestinal health of the mother and infant.^4–7 ART is found at varying levels in breast milk, and the implications of this low level ART exposure for the infant remain unclear.^8,9 If an infant acquires HIV in this setting, there is the risk of transmission of resistant virus, which may reduce options for treatment.

The British HIV Association (BHIVA) guidelines continue to recommend formula feeding for mothers living with HIV as there is zero risk of postnatal HIV transmission.¹⁰ However, women on suppressive ART can be supported to breastfeed (BF) with additional monitoring of both the mother and baby. Availability of free or subsidised formula milk for WLHs who cannot afford this is variable across the UK and is mainly dependent on charitable funds.^11,12

The World Health Organisation (WHO) recommends breastfeeding for women on suppressive ART due to increasing evidence that the risk of HIV transmission from breastfeeding is outweighed by the increased morbidity and mortality of non-breastfed infants in LMICs.¹³ Encouragement of breastfeeding is also accepted as an important public health strategy due to its numerous benefits to the infant, both in the short term and long term, as well as the reduction of depression, breast and ovarian cancers in the mother.^14,15 Similarly, the long-term risk of hypertension, type 2 diabetes mellitus and obesity is significantly lower in individuals who breastfed in infancy.^16–18

In addition, there are a variety of social, financial and cultural pressures for women to breastfeed, which can cause difficulties for WLHs who are advised not to breastfeed. These pressures may cause personal distress, and difficult questions may arise about their reasons for not breastfeeding, which may on occasion result in breastfeeding against medical advice.¹⁹ In one study, women felt an acute sense of personal loss and avoiding breastfeeding came at significant emotional cost.¹⁹ One participant in this study chose to breastfeed against medical advice due to fear of disclosing her HIV status and financial constraints, arising from her uncertain immigration status with no leave to remain in the UK, and not being able to access public funds.¹⁹ An evidence base and research into the prevalence of unreported breastfeeding in WLHs in the UK is lacking. There is also limited exploration of the views of women with HIV about breastfeeding, the cultural and social pressures to breastfeed they may experience and their understanding of the current national recommendations for women with HIV. The PACIFY study (Positive Attitudes Concerning Infant Feeding) sought to explore the views, concerns and issues surrounding breastfeeding in WLHs.

Methods

Study design

There were no previous questionnaires to explore this issue hence using formative research a six-page anonymised questionnaire was designed by the London HIV Pregnancy Network group with considerable input from WLHs.

We aimed to administer 100 questionnaires over a 6-month period from participants to assess views, concerns and attitudes towards breastfeeding in the UK. This was based on what was feasible in clinical services over the time period, taking into consideration participating clinics and pregnancy rates. The questionnaire received approval from Imperial College Healthcare NHS Trust Sexual Health and HIV Research Committee and North West London Research Ethics Committee (Integrated Research Application System (IRAS) number 221952).

Study settings and population

Participants were recruited by clinicians from 12 HIV clinics across England (South East, West Midlands and West Yorkshire) between June 2017 and June 2018. Participants were given the study patient information leaflet and consent form when they attended their regular pre- or postnatal outpatient appointment and, if they agreed to participate, they completed the anonymised questionnaire (Supplemental Appendix X) during the same visit. All the questionnaires were collated at Imperial College Healthcare NHS Trust.

Eligible participants were WLHs over the age of 18 years who were either within 3 months post-partum or in the third trimester of pregnancy and able to read and write in English.

Data collection

Data were collated by the research coordinator based at Imperial College Healthcare NHS Trust. This was collated on a Microsoft Excel spreadsheet after liaising with a statistician and checked to ensure accuracy. Data on CD4 and HIV viral load were added by clinicians (Table 1).

Table 1.

Demographic number of women (% of sample), n = 94.

Ethnicity
Black African	65 (69%)
Black Caribbean	6 (6%)
Black other	1 (1%)
Asian	9 (10%)
Mixed race	3 (3%)
White British	8 (9%)
White other	2 (2%)

Immigration
Immigrants	70 (74%)
Non-immigrants	18 (19%)
No answer	6 (6%)

Employment status
Employed	51 (54%)
Unemployed	43 (46%)
Pregnant	63 (67%)
Post-partum	31 (33%)

Education status
Higher education	77 (82%)
Secondary school	13 (14%)
Primary school	3 (3%)
No answer	1 (1%)

HIV diagnosed
Before pregnancy	71 (76%)
During current pregnancy	23 (24%)

HIV parameters
HIV viral load <50 copies/ml	86 (94%)
HIV viral load >50 copies/ml	1 (1%)
No answer	7 (7%)

Results

Of the 94 participants who completed the questionnaire, 69% (65/94) were Black African women and the median age was 36 years (IQR 31–39). Seventy four percent (70/94) identified as immigrants and 54% (51/94) were employed.

Two-thirds (63/94) were currently pregnant, and one-third (31/94) were post-partum. Twenty three percent (24/94) reported that they were diagnosed with HIV during the current pregnancy. Median CD4 count was 618 cells/mm³ and 92% (87/94) had an “undetectable” HIV viral load (<50 copies/ml).

Two-thirds of participants had to invent reasons as to why they were not/or not intending to breastfeed, and 62% had friends, family or community members who questioned why they were not breastfeeding. A large number of participants (89%) said they would breastfeed if they were HIV negative and over a third stated they would like to breastfeed, despite having HIV. The reasons for wanting to breastfeed included health benefits for the baby, cultural reasons and pressure from family and friends. However, half the participants had concerns about breastfeeding whilst on ART. Participants were concerned about HIV transmission and side effects of medication in breast milk (Table 2).

Table 2.

Knowledge and experiences of breastfeeding among women living with HIV – expressed as number of women (% of sample), n = 94.

Question	Yes	No	Don’t know	No answer
Have any friends, family or community members ever questioned you about your reasons for not breastfeeding?	58 (62%)	25 (27%)		11 (12%)
Have you ever had to lie about your reasons for not breastfeeding?	62 (66%)	21 (22%)		11 (12%)
If you did not have HIV, would you BF your child?	84 (89%)	2 (2%)	8 (9%)
Living with HIV, would you like to BF your child?	36 (38%)	45 (48%)	6 (6%)	7 (7%)
Do you think it’s safe for women with detectable HIV in the blood (whether on or off treatment) to BF?	3 (3%)	63 (67%)	22 (23%)	6 (6%)
Do you think it’s safe for women on treatment with fully suppressed HIV (‘asleep’) in the blood to BF?	26 (27%)	33 (35%)	31 (33%)	4 (4%)
If you were to BF, would you be willing to have monthly blood tests to check your viral load stays undetectable (asleep)?	83 (88%)	10 (11%)		1 (1%)
If you were to BF, would you be willing for your baby to have a monthly HIV blood test?	79 (84%)	13 (14%)		2 (2%)
Do you have any concerns about breastfeeding whilst you are taking anti-HIV medicines?	47 (50%)	44 (47%)	1 (1%)	2 (2%)
Have you heard of ‘exclusive breast feeding’ (that is giving the baby breast milk only and no other feeds or drinks)?	63 (67%)	29 (31%)		2 (2%)
If you were to BF, would you be happy to exclusively BF?	51 (54%)	41 (44%)		2 (2%)
Have any healthcare workers discussed breastfeeding with you?	84 (89%)	8 (9%)		2 (2%)
Would you like more information on the benefits and disadvantages of breastfeeding?	45 (48%)	48 (51%)		1 (1%)

The majority of women reported that healthcare workers discussed breastfeeding with them, but the quality and depth of those conversations were unclear. Participants did not appear to fully understand that scenarios where breastfeeding could be supported were HIV viral load dependent. Only two-thirds of participants understood it was not safe to breastfeed with a detectable HIV viral load. Answers on whether it was safe to breastfeed with an undetectable HIV viral load were also variable, and a quarter of participants thought it was safe to do so.

Discussion

Significant differences between breastfeeding guidelines for WLHs in LMICs have caused confusion amongst WLHs in resource-rich settings. The World Health Organisation guidance for WLHs in LMICs is to breastfeed if on suppressive ART; however, BHIVA recommends formula feeding as this reduces the risk of postnatal transmission to zero.^5,10 Currently in the UK, a WLH with fully suppressed viral load will be supported if she chooses to breastfeed, with the aim of minimising harm to herself and her infant. Recommendations include monthly clinic visits and blood tests for both the mother and baby during the duration of breastfeeding.¹⁰ Over 80% of respondents said they found attending for monthly HIV viral loads acceptable; however, 5% of participants that agreed to this were concerned about the pressure of monthly blood tests on their baby.

Half of participants had concerns about breastfeeding while taking ART. Participants were concerned about passing on HIV and potential side effects of ART in breast milk. As already discussed, ART can be transmitted in breastmilk and the amount of ART present is dependent on the type of drug.⁸ The consequences of this ongoing exposure are unknown, and if an infant were to have acquired HIV, there is a risk of transmitted viral resistance.

Participants highlighted that although they had discussions with clinicians around breastfeeding, they still wanted more information. Recent clinical trials have shown that sexual partners with undetectable HIV viral load (<200 copies/ml) for 6 months or more on suppressive ART have a zero risk of sexual transmission.^20,21 This resulted in the launch of the Undetectable = Untransmittable campaign in 2016. More research is required into ascertaining whether this can also be applied to the infant exposure during breastfeeding; indeed, at present it cannot be said that U = U for breastfeeding.

The respondents to the PACIFY questionnaire certainly highlight the need for clinicians to give better information on breastfeeding and rationale of current guidelines, so women have a clear understanding of how best to make their choice for infant feeding.

Over half of participants had friends, family and community members who questioned why they were not intending to breast feed, and two-thirds of participants had to invent reasons for not breastfeeding. This highlights the fact that HIV stigma and secrecy remain a significant issue for WLHs in their choice of infant feeding, and as clinicians, we should be mindful of this. An analysis of global breastfeeding prevalence found that in the UK, only 34% of babies are receiving some breast milk at 6 months, which is amongst the lowest rates in Europe.²² Studies in LMICs show that extended family and community members contribute to decision-making around infant feeding.^23,24 Culturally, in these settings, the expectation is that women will choose to breastfeed and not breastfeeding may be considered a way of disclosing their HIV status.^23–25 It is also important to consider the immigration status of patients as they may be at risk of deportation to LMICs where guidance and cultural settings, as well as the risk/benefit for BF, may be different. Provision of peer support may certainly help women to mitigate some of the hurdles discussed above.²⁶

Limitations

Our study involved completion of a questionnaire, and although there were patient and public involvement in the creation of the questionnaire, there is always the potential that some of the questions may have been misunderstood, leading to incorrect or no answers being provided. We did not ask participants’ questions on whether they had any HIV-infected children or where their children were born. This may have affected responses to our questionnaire. Our sample size may have been small but provides preliminary data for future qualitative research which can explore emotional and more complex psycho-social aspects for WLHs concerning breastfeeding.

Unfortunately, it was not possible to ascertain the number of women who refused to complete the questionnaire, their demographics or their reasons for refusal, although this was rare, according to clinic staff. This may have led to our sample being unrepresentative; however, the questionnaire was offered to all eligible women who attended the participating clinics within research time frame.

Conclusion

Whether “Undetectable = Untransmittable” (U = U) for breastfeeding cannot yet be affirmed, however even in this context, WLHs on suppressive ART may still want to breastfeed. Stigma and secrecy remain an important issue for the women who felt compelled to disguise their reasons for not breastfeeding. This questionnaire has highlighted that HIV clinicians in resource-rich settings should have more open dialogue with women around current evidence on breastfeeding with HIV, including the risks and benefits of breastfeeding on suppressive ART, as well as the consequences of stigma. Support, both clinical and peer mentor, for women who choose to breastfeed is essential, to minimise any risk to themselves or their infants.

Supplemental Material

sj-pdf-1-std-10.1177_0956462421999951 – Supplemental Material for Over a third of childbearing women with HIV would like to breastfeed: A UK survey of women living with HIV

Supplemental Material, sj-pdf-1-std-10.1177_0956462421999951 for Over a third of childbearing women with HIV would like to breastfeed: A UK survey of women living with HIV by Farai Nyatsanza, Jessica Gubbin, Thomas Gubbin, Paula Seery, Pippa Farrugia, Adam Croucher, Yvonne Gilleece, Melanie Rosenvinge, Sherie Roedling, Liat Sarner, Dayawathie Nayagam, Clare Stradling, Angelina Namiba, Nicola Fearnley, and Hermione Lyall in International Journal of STD & AIDS

Footnotes

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Farai Nyatsanza

Supplemental material

Supplemental material for this article is available online.

References

Peters

Thorne

Tookey

, et al.

National audit of perinatal HIV infections in the UK, 2006–2013: what lessons can be learnt?

HIV medicine. 2018; 19(4): 280–289.

Nduati

John

Mbori-Ngacha

, et al. Effect of breastfeeding and formula feeding on transmission of HIV-1: a randomized clinical trial. Jama. 2000; 283(9): 1167–1174.

Flynn

Taha

Cababasay

, et al. Prevention of HIV-1 transmission through breastfeeding: efficacy and safety of maternal antiretroviral therapy versus infant nevirapine prophylaxis for duration of breastfeeding in HIV-1-infected women with high CD4 cell count (IMPAACT PROMISE): a randomized, open label, clinical trial. J acquired immune deficiency syndromes 1999. 2018; 77(4): 383.

Davis

Miller

Hudgens

, et al. Maternal and breast milk viral load: impacts of adherence on peri-partum HIV infections averted-the BAN study. J acquired immune deficiency syndromes 1999. 2016; 73(5): 572.

Newell

. HIV transmission through breastfeeding: a review of available evidence. Geneva: World Health Organization, 2004.

Willumsen

Filteau

Coutsoudis

, et al. Breastmilk RNA viral load in HIV-infected South African women: effects of subclinical mastitis and infant feeding. Aids. 2003; 17(3): 407–414.

Willumsen

Filteau

Coutsoudis

, et al. Subclinical mastitis as a risk factor for mother-infant HIV transmission. In Short and long term effects of breast feeding on child health 2002. Boston, MA:Springer, pp. 211–223.

Waitt

Garner

Bonnett

, et al. Is infant exposure to antiretroviral drugs during breastfeeding quantitatively important? A systematic review and meta-analysis of pharmacokinetic studies. J Antimicrob Chemother 2015; 70(7): 1928–1941.

Fogel

Mwatha

Richardson

, et al. Impact of maternal and infant antiretroviral drug regimens on drug resistance in HIV-infected breastfeeding infants. Pediatr Infect Dis J 2013; 32(4): e164.

10.

British HIV Association . British HIV Association guidelines for the management of HIV infection in pregnant women 2018. Available at: https://www.bhiva.org/file/WrhwAPoKvRmeV/BHIVA-Pregnancy-guidelines-consultation-draft-final.pdf. Accessed 27 August 2018.

11.

Thewliss

. All Party Parliamentary Group on Infant feeding and inequalities-UK Parliament. http://www.infantfeedingappg.uk/wp-content/uploads/2018/11/APPGIFI-Inquiry-Report-cost-of-infant-formula.pdf.

12.

National AIDS Trust . Access to formula milk for mothers living with HIV in the UK. [online]. London: National AIDS Trust, 2017: p. 11. Available at: https://www.nat.org.uk/sites/default/files/publications/Access%20to%20Formula%20Milk%20Briefing%20FINAL.pdf.

13.

World Health Organization . Guidelines on HIV and infant feeding 2010: Principles and recommendations for infant feeding in the context of HIV and a summary of evidence. Geneva: World Health Organization, 2010.

14.

DH . Parents’ views on the maternity journey and early parenthood: what expectant and new parents have told us about their experiences of maternity and early years care, The Futures Company; 2009. Gateway ref. 15469.

15.

WCRF/AICR . Policy and action for cancer prevention: food, nutrition, and physical activity: a global perspective. Washington DC: AICR, 2009

16.

Horta

Loret de Mola

, and Victora

. Long‐term consequences of breastfeeding on cholesterol, obesity, systolic blood pressure and type 2 diabetes: a systematic review and meta‐analysis. Acta Paediatr 2015; 104: 30–37.

17.

Martin

Gunnell

Davey Smith

. Breastfeeding in infancy and blood pressure in later life: systematic review and meta-analysis. Am J Epidemiol. 2005; 161(1): 15–26.

18.

American Academy of Paediatrics . Policy statement: breastfeeding and the use of human milk. Pediatrics 2012; 129(3); e827-e841.

19.

Tariq

Elford

Tookey

, et al. “It pains me because as a woman you have to breastfeed your baby”: decision-making about infant feeding among African women living with HIV in the UK. Sex Transm Infect 2016; 92(5): 331–336.

20.

Cohen

McCauley

Gamble

. HIV treatment as prevention and HPTN 052. Curr Opin HIV AIDS 2012; 7(2): 99.

21.

Rodger

Cambiano

Bruun

, et al. Risk of HIV transmission through condomless sex in serodifferent gay couples with the HIV-positive partner taking suppressive antiretroviral therapy (PARTNER): final results of a multicentre, prospective, observational study. The Lancet 2019; 393(10189): 2428–2438.

22.

Victora

Bahl

Barros

, et al. Breastfeeding in the 21st century: epidemiology, mechanisms, and lifelong effect. The Lancet 2016; 387(10017): 475–490.

23.

Kasinga

Mogotlane

Van Rensburg

. Knowledge of pregnant women on transmission of HIV infection through breast feeding. Curationis 2008; 31(3): 21–26.

24.

Cames

Saher

Ayassou

, et al. Acceptability and feasibility of infant‐feeding options: experiences of HIV‐infected mothers in the World Health Organization Kesho Bora mother‐to‐child transmission prevention (PMTCT) trial in Burkina Faso. Matern child Nutr 2010; 6(3): 253–265.

25.

Chinkonde

Hem

Sundby

. HIV and infant feeding in Malawi: public health simplicity in complex social and cultural contexts. BMC Public Health 2012; 12(1): 700.

26.

McColl

. Mentor mothers to prevent mother-to-child transmission of HIV. BMJ. 2012; 344: e1590.

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