How women living with HIV in the UK manage infant-feeding decisions and vertical transmission risk - a qualitative study.
Breastfeeding
HIV
HIV prevention
Infant-feeding
Mother-to-child transmission
Vertical transmission
Journal
BMC public health
ISSN: 1471-2458
Titre abrégé: BMC Public Health
Pays: England
ID NLM: 100968562
Informations de publication
Date de publication:
06 Aug 2024
06 Aug 2024
Historique:
received:
12
12
2023
accepted:
24
07
2024
medline:
7
8
2024
pubmed:
7
8
2024
entrez:
6
8
2024
Statut:
epublish
Résumé
The World Health Organization (WHO) recommends that women with HIV breastfeed for a minimum of one year. In contrast, across high-income countries, HIV and infant-feeding guidelines recommend exclusive formula feeding if parents want to avoid all risk of postpartum transmission. However, recently these guidelines (including in the United Kingdom (UK)) increasingly state that individuals with HIV should be supported to breast/chest feed if they meet certain criteria; such as an undetectable maternal HIV viral load and consent to additional clinical monitoring. Between 600 and 800 pregnancies are reported annually in women with HIV in the UK, with low rates of vertical transmission (0.22%). Informed infant-feeding decision-making requires clinical support. Currently, little research addresses how individuals with HIV in high-income countries navigate infant-feeding decisions with their clinical teams and familial and social networks, and the resources needed to reach an informed decision. Semi-structured remote interviews were conducted between April 2021 - January 2022 with UK-based individuals with a confirmed HIV diagnosis who were pregnant or one-year postpartum. Using purposive sampling, pregnant and postpartum participants were recruited through NHS HIV clinics, community-based organisations and snowballing. Data were analysed thematically and organised using NVivo 12. Of the 36 cisgender women interviewed, 28 were postpartum. The majority were of Black African descent (n = 22) and born outside the UK. The majority of postpartum women had chosen to formula feed. Women's decision-making regarding infant-feeding was determined by (1) information and support; (2) practicalities of implementing medical guidance; (3) social implications of infant-feeding decisions. The evolution of UK HIV and infant-feeding guidelines are not reflected in the experiences of women living with HIV. Clinicians' emphasis on reducing the risk of vertical transmission, without adequately considering personal, social and financial concerns, prevents women from making fully informed infant-feeding decisions. For some, seeking advice beyond their immediate clinical team was key to feeling empowered in their decision. The significant informational and support need among women with HIV around their infant-feeding options must be addressed. Furthermore, training for and communication by healthcare professionals supporting women with HIV is essential if women are to make fully informed decisions.
Sections du résumé
BACKGROUND
BACKGROUND
The World Health Organization (WHO) recommends that women with HIV breastfeed for a minimum of one year. In contrast, across high-income countries, HIV and infant-feeding guidelines recommend exclusive formula feeding if parents want to avoid all risk of postpartum transmission. However, recently these guidelines (including in the United Kingdom (UK)) increasingly state that individuals with HIV should be supported to breast/chest feed if they meet certain criteria; such as an undetectable maternal HIV viral load and consent to additional clinical monitoring. Between 600 and 800 pregnancies are reported annually in women with HIV in the UK, with low rates of vertical transmission (0.22%). Informed infant-feeding decision-making requires clinical support. Currently, little research addresses how individuals with HIV in high-income countries navigate infant-feeding decisions with their clinical teams and familial and social networks, and the resources needed to reach an informed decision.
METHODS
METHODS
Semi-structured remote interviews were conducted between April 2021 - January 2022 with UK-based individuals with a confirmed HIV diagnosis who were pregnant or one-year postpartum. Using purposive sampling, pregnant and postpartum participants were recruited through NHS HIV clinics, community-based organisations and snowballing. Data were analysed thematically and organised using NVivo 12.
RESULTS
RESULTS
Of the 36 cisgender women interviewed, 28 were postpartum. The majority were of Black African descent (n = 22) and born outside the UK. The majority of postpartum women had chosen to formula feed. Women's decision-making regarding infant-feeding was determined by (1) information and support; (2) practicalities of implementing medical guidance; (3) social implications of infant-feeding decisions.
CONCLUSION
CONCLUSIONS
The evolution of UK HIV and infant-feeding guidelines are not reflected in the experiences of women living with HIV. Clinicians' emphasis on reducing the risk of vertical transmission, without adequately considering personal, social and financial concerns, prevents women from making fully informed infant-feeding decisions. For some, seeking advice beyond their immediate clinical team was key to feeling empowered in their decision. The significant informational and support need among women with HIV around their infant-feeding options must be addressed. Furthermore, training for and communication by healthcare professionals supporting women with HIV is essential if women are to make fully informed decisions.
Identifiants
pubmed: 39107773
doi: 10.1186/s12889-024-19581-9
pii: 10.1186/s12889-024-19581-9
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
2130Informations de copyright
© 2024. The Author(s).
Références
Marcus JL, Leyden WA, Alexeeff SE, Anderson AN, Hechter RC, Hu H, Infection HIV, et al. JAMA Netw Open. 2020;3(6):2000–16.
doi: 10.1001/jamanetworkopen.2020.7954
Rodger AJ, Cambiano V, Bruun T, Vernazza P, Collins S, Degen O, 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. Lancet. 2019;393(10189):2428–38.
pubmed: 31056293
pmcid: 6584382
doi: 10.1016/S0140-6736(19)30418-0
Giroir BP. The time is now to end the HIV Epidemic. Am J Public Health. 2020;110(1):22–4.
pubmed: 31725312
pmcid: 6893354
doi: 10.2105/AJPH.2019.305380
Sibiude J, Le Chenadec J, Mandelbrot L, Hoctin A, Dollfus C, Faye A, et al. Update of Perinatal Human Immunodeficiency Virus Type 1 transmission in France: zero transmission for 5482 mothers on continuous antiretroviral therapy from conception and with undetectable viral load at delivery. Clin Infect Dis. 2023;76(3):e590–8.
pubmed: 36037040
doi: 10.1093/cid/ciac703
Flynn PM, Taha TE, Cababasay M, Fowler MG, Mofenson LM, Owor M, 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 Acquir Immune Defic Syndr. 2018;77(4):383–92.
pubmed: 29239901
pmcid: 5825265
doi: 10.1097/QAI.0000000000001612
Moseholm E, Weis N. Women living with HIV in high-income settings and breastfeeding. J Intern Med. 2020;287(1):19–31.
pubmed: 31614046
doi: 10.1111/joim.12986
Abuogi L, Smith C, Kinzie K, Barr E, Bonham A, Johnson RL, et al. Development and implementation of an Interdisciplinary Model for the management of Breastfeeding in Women with HIV in the United States: experience from the Children’s Hospital Colorado Immunodeficiency Program. J Acquir Immune Defic Syndr. 2023;93(5):395–402.
pubmed: 37104739
doi: 10.1097/QAI.0000000000003213
Levison J, McKinney J, Duque A, Hawkins J, Bowden EVH, Dorland J et al. Breastfeeding among people with HIV in North America: a multisite study. Clin Infect Dis. 2023.
UKHSA. Integrated Screening Outcomes Surveillance Service (ISOSS) annual report 2021. GOV.UK: GOV.UK, ISOSS. 2022 31 October 2022.
World Health O. Unicef. Guideline.: the duration of breastfeeding, and support from health services to improve feeding practices among mothers living with HIV. Geneva New York: World Health Organization. UNICEF; 2016.
Gilleece DY, Tariq DS, Bamford DA, Bhagani DS, Byrne DL, Clarke DE, et al. British HIV Association guidelines for the management of HIV in pregnancy and postpartum 2018. HIV Med. 2019;20(Suppl 3):s2–85.
pubmed: 30869192
Avery AB, Magnus JH. Expectant fathers’ and mothers’ perceptions of breastfeeding and formula feeding: a focus group study in three US cities. J Hum Lact. 2011;27(2):147–54.
pubmed: 21393504
doi: 10.1177/0890334410395753
Boucoiran I, Kaida A, Blakeley C, Skerritt L, Khan S, Bakombo MD et al. Practices, support and stigma related to infant feeding and postpartum engagement in care among women living with HIV in Canada. AIDS Care. 2023:1–11.
Greene S. Why Aren’t You Breastfeeding? How Mothers Living With HIV Talk About Infant Feeding in a Breast Is Best World. Health Care Women Int. 2014;36(8).
Gross MS, Taylor HA, Tomori C, Coleman JS. Breastfeeding with HIV: an evidence-based case for New Policy. J Law Med Ethics. 2019;47(1):152–60.
pubmed: 30994076
pmcid: 7053566
doi: 10.1177/1073110519840495
Lancet T. The 2023 Lancet Series on Breastfeeding. 2023.
Victora CG, Rollins NC, Murch S, Krasevec J, Bahl R. Breastfeeding in the 21st century - authors’ reply. Lancet. 2016;387(10033):2089–90.
pubmed: 27301819
doi: 10.1016/S0140-6736(16)30538-4
McGowan C, Bland R. The benefits of breastfeeding on Child Intelligence, Behavior, and executive function: a review of recent evidence. Breastfeed Med. 2023;18(3):172–87.
pubmed: 36749962
doi: 10.1089/bfm.2022.0192
Modak A, Ronghe V, Gomase KP. The psychological benefits of breastfeeding: fostering maternal well-being and Child Development. Cureus. 2023;15(10):e46730.
pubmed: 38021634
pmcid: 10631302
Lubis PN, Saputra M, Rabbani MW. A systematic review of the benefits of breastfeeding against postpartum depression in low-middle-income countries. J Ment Health. 2024:1–13.
Dagla M, Dagla C, Mrvoljak-Theodoropoulou I, Kontiza E, Tsolaridou E, Antoniou E. The Association of Breastfeeding Difficulties at the 6(th) week Postpartum with maternal Psychological Well-being and other perinatal factors: a Greek retrospective longitudinal study. Mater Sociomed. 2021;33(2):109–13.
pubmed: 34483738
pmcid: 8385733
doi: 10.5455/msm.2021.33.109-113
Rivi V, Petrilli G, Blom JMC. Mind the Mother when considering breastfeeding. Front Glob Womens Health. 2020;1(3).
Rippeyoung PLN. Is Breastfeeding truly cost free? Income consequences of Breastfeeding for women. Am Sociol Rev. 2012;77(2):244–67.
doi: 10.1177/0003122411435477
Noonan MC, Rippeyoung PL. The economic costs of breastfeeding for women. Breastfeed Med. 2011;6:325–7.
pubmed: 22007821
doi: 10.1089/bfm.2011.0083
NHS. Introduction to mixed feeding: NHS. 2024 [ https://www.nhs.uk/start-for-life/baby/feeding-your-baby/mixed-feeding/introduction-to-mixed-feeding/
Peters H, editor. ISOSS Pregnancy characteristics and outcomes of women with vertically-acquired HIV in the UK. BHIVA Spring Conference; 2022 20 April 2022; Manchester, UK. https://www.bhiva.org/file/6295ea3448124/O9.pdf2022
Peters H, Thorne C, Tookey PA, Byrne L. National audit of perinatal HIV infections in the UK, 2006–2013: what lessons can be learnt? HIV Med. 2018;19(4):280–9.
pubmed: 29336508
pmcid: 5901012
doi: 10.1111/hiv.12577
Freeman-Romilly N, Nyatsanza F, Namiba A, Lyall H. Moving closer to what women want? A review of breastfeeding and women living with HIV in the UK and high-income countries. HIV Med. 2020;21(1):1–8.
pubmed: 31825556
doi: 10.1111/hiv.12792
Nyatsanza F, Gubbin J, Gubbin T, Seery P, Farrugia P, Croucher A, et al. Over a third of childbearing women with HIV would like to breastfeed: a UK survey of women living with HIV. Int J STD AIDS. 2021;32(9):856–60.
pubmed: 33629917
doi: 10.1177/0956462421999951
ISOSS. ISOSS HIV report 2022 GOV.UK: GOV.UK. 2023 [cited 2023 23 Oct]. https://www.gov.uk/government/publications/infectious-diseases-in-pregnancy-screening-isoss-hiv-report-2022/isoss-hiv-report-2022#acknowledgements
Kasadha B, Tariq S, Freeman-Romilly N, Pope C, Namiba A, Nyatsanza F, et al. We decided together: a qualitative study about women with HIV navigating infant-feeding decisions with the father of their children. BMC Pregnancy Childbirth. 2024;24(1):41.
pubmed: 38184571
pmcid: 10770965
doi: 10.1186/s12884-023-06198-w
Rai T, Kasadha B, Tariq S, Keating S, Hinton L, Namiba A et al. Infant feeding as a transgressive practice in the context of HIV in the UK: a qualitative interview study. Women’s Stud Int Forum. 2023;101.
Saunders B, Sim J, Kingstone T, Baker S, Waterfield J, Bartlam B, et al. Saturation in qualitative research: exploring its conceptualization and operationalization. Qual Quant. 2018;52(4):1893–907.
pubmed: 29937585
doi: 10.1007/s11135-017-0574-8
Pope C, Ziebland S, Mays N. Qualitative research in health care. Analysing qualitative data. BMJ. 2000;320(7227):114–6.
pubmed: 10625273
pmcid: 1117368
doi: 10.1136/bmj.320.7227.114
Ziebland S, McPherson A. Making sense of qualitative data analysis: an introduction with illustrations from DIPEx (personal experiences of health and illness). Med Educ. 2006;40(5):405–14.
pubmed: 16635119
doi: 10.1111/j.1365-2929.2006.02467.x
Kasadha B, Tariq S, Nyatsanza F, Freeman-Romilly N, Namiba A, Rai T. Stakeholder engagement is essential to maximise the impact of research on infant feeding in the context of HIV. Ther Adv Infect Dis. 2021;8:20499361211057970.
pubmed: 34868581
pmcid: 8640292
Rollins N, Piwoz E, Baker P, Kingston G, Mabaso KM, McCoy D, et al. Marketing of commercial milk formula: a system to capture parents, communities, science, and policy. Lancet. 2023;401(10375):486–502.
pubmed: 36764314
doi: 10.1016/S0140-6736(22)01931-6
Merritt R, Eida T, Safon C, Kendall S. Print media coverage of breastfeeding in Great Britain: positive or negative? Matern Child Nutr. 2023;19(Suppl 1):e13458.
pubmed: 36424710
doi: 10.1111/mcn.13458
Merritt R, Kendall S, Eida T, Dykes F, Pérez-Escamilla R. Scaling up breastfeeding in England through the becoming breastfeeding friendly initiative (BBF). Maternal Child Nutr. 2023;19.
Greene S, Ion A, Kwaramba G, Smith S, Loutfy MR. Why are you pregnant? What were you thinking? How women navigate experiences of HIV-related stigma in medical settings during pregnancy and birth. Soc Work Health Care. 2016;55(2):161–79.
pubmed: 26684355
doi: 10.1080/00981389.2015.1081665
Tariq S, Elford J, Tookey P, Anderson J, de Ruiter A, O’Connell R, 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):331–6.
pubmed: 26757986
doi: 10.1136/sextrans-2015-052224
Griswold MK, Pagano-Therrien J. Women living with HIV in High Income Countries and the deeper meaning of breastfeeding avoidance: a metasynthesis. J Hum Lact. 2020;36(1):44–52.
pubmed: 31895603
doi: 10.1177/0890334419886565
Odeniyi AO, Embleton N, Ngongalah L, Akor W, Rankin J. Breastfeeding beliefs and experiences of African immigrant mothers in high-income countries: a systematic review. Matern Child Nutr. 2020;16(3):e12970.
pubmed: 32141195
pmcid: 7296807
doi: 10.1111/mcn.12970
Harris LR, Lee DH, Mareuil JW, Rakhmanina NY, Koay WLA. The Mental Health effects and experiences of Breastfeeding decision-making among Postpartum Women living with HIV. AIDS Behav. 2023.
Zarei N, Joulaei H, Darabi E, Fararouei M. Stigmatized attitude of Healthcare providers: a Barrier for Delivering Health Services to HIV positive patients. Int J Community Based Nurs Midwifery. 2015;3(4):292–300.
pubmed: 26448956
pmcid: 4591575
Horwood C, Jama N, Haskins A, Coutsoudis L, A., Spies L. A qualitative study exploring infant feeding decision-making between birth and 6 months among HIV‐positive mothers. Matern Child Nutr. 2019;15(2).
Nieuwoudt S, Manderson L. Frontline health workers and exclusive breastfeeding guidelines in an HIV endemic South African community: a qualitative exploration of policy translation. Int Breastfeed J. 2018;13:20.
pubmed: 29930693
pmcid: 5992713
doi: 10.1186/s13006-018-0164-y
Manca T. Risk and intersectional power relations: an exploration of the implications of early COVID-19 pandemic responses for pregnant women. Health Risk Soc. 2021;23(7–8):321–38.
doi: 10.1080/13698575.2021.1994933
Allyson I, Greene S, Sindinga C, Grace D. Risk and preventing perinatal HIV transmission: uncovering the social organisation of prenatal care for women living with HIV in Ontario, Canada. Health Risk Soc. 2020;22(2):136–55.
doi: 10.1080/13698575.2020.1760217
Ayed A, Embaireeg A, Benawadh A, Al-Fouzan W, Hammoud M, Al-Hathal M, et al. Maternal and perinatal characteristics and outcomes of pregnancies complicated with COVID-19 in Kuwait. BMC Pregnancy Childbirth. 2020;20(1):754.
pubmed: 33267785
pmcid: 7709095
doi: 10.1186/s12884-020-03461-2
Briana DD, Malamitsi-Puchner A. Breastfeeding provides a protective hug and the benefits have outweighed the risks during the COVID-19 pandemic. Acta Paediatr. 2023;112(6):1177–81.
pubmed: 36945791
doi: 10.1111/apa.16769
Berg RC, Page S, Ogard-Repal A. The effectiveness of peer-support for people living with HIV: a systematic review and meta-analysis. PLoS ONE. 2021;16(6):e0252623.
pubmed: 34138897
pmcid: 8211296
doi: 10.1371/journal.pone.0252623
McLeish J, Redshaw M. We have beaten HIV a bit’: a qualitative study of experiences of peer support during pregnancy with an HIV Mentor Mother project in England. BMJ Open. 2016;6(6):e011499.
pubmed: 27324716
pmcid: 4916630
doi: 10.1136/bmjopen-2016-011499
Buchter RB, Fechtelpeter D, Knelangen M, Ehrlich M, Waltering A. Words or numbers? Communicating risk of adverse effects in written consumer health information: a systematic review and meta-analysis. BMC Med Inf Decis Mak. 2014;14:76.
doi: 10.1186/1472-6947-14-76
Lee S, Holden D, Webb R, Ayers S. Pregnancy related risk perception in pregnant women, midwives & doctors: a cross-sectional survey. BMC Pregnancy Childbirth. 2019;19(1):335.
pubmed: 31558157
pmcid: 6764151
doi: 10.1186/s12884-019-2467-4
Gilleece DY, Byrne L, Bamford A, Lyall H, Seery P, Tariq S. Interim BHIVA position statement on HIV and mixed infant feeding. bhiva.org. British HIV Association (BHIVA); 2022.
Lindsay S. A comparative analysis of Data Quality in Online Zoom Versus phone interviews: an example of Youth with and without disabilities. Sage Open. 2022;12(4).
Davies L, LeClair KL, Bagley P, Blunt H, Hinton L, Ryan S, et al. Face-to-face compared with Online Collected accounts of Health and Illness experiences: a scoping review. Qual Health Res. 2020;30(13):2092–102.
pubmed: 32667257
doi: 10.1177/1049732320935835