Skip to main content
SpringerLink
Log in

The Mental Health Effects and Experiences of Breastfeeding Decision-Making Among Postpartum Women Living with HIV

  • Original Paper
  • Published:
AIDS and Behavior Aims and scope Submit manuscript

Abstract

Prior to January 2023, women living with HIV (WLWH) in the United States (US) were discouraged from breastfeeding due to the potential risk of mother-to-child HIV transmission through breastfeeding. Lack of breastfeeding decision-making and experience among WLWH may negatively affect maternal mental health. We implemented a quality improvement initiative to screen WLWH for postpartum depression (PPD), evaluate their attitudes toward breastfeeding, and assess their experience with breastfeeding decision-making. We collected quantitative data from WLWH using a voluntary, self-administered 6-item breastfeeding decision-making and experience survey (administered 1 month postpartum) and a 10-item Edinburgh Postnatal Depression Scale (EPDS, negative = 0–9; administered 1 and 4 months postpartum) tool. We conducted descriptive statistics and cross tabulation analysis. We analyzed 106 WLWH (93.4% non-Hispanic Black/African American; mean age 33.1 years; 82.1% HIV RNA < 200 copies/mL). One in five (19.1%) WLWH had a positive baseline EPDS screen, with the mean EPDS scores decreasing from 5.3 ± 5.4 (baseline) to 4.6 ± 4.8 (follow-up). Among 55 WLWH who provided baseline and follow-up EPDS scores, only 3/13 with a positive baseline EPDS screen had resolved depressive symptoms at follow-up. Over one-third (37.7%) of WLWH indicated feeling “sadness” when asked whether lack of breastfeeding negatively affected their feelings or emotions. Over half of WLWH (51.9%) were aware of the US breastfeeding recommendations, but the majority (60.4%) had never discussed breastfeeding options with a medical provider. Improved provider–patient discussions on infant feeding options among WLWH is needed to increase awareness of breastfeeding choices and promote informed, autonomous breastfeeding decision-making among WLWH.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2
Fig. 3

Similar content being viewed by others

References

  1. United States Department of Health & Human Services (HHS). Counseling and Managing Individuals with HIV in the United States Who Desire to Breastfeed. https://clinicalinfo.hiv.gov/en/guidelines/perinatal/counseling-and-managing-individuals-with-hiv-united-states-who-desire-breastfeed (2021). Accessed 10 Dec 2022.

  2. Gross MS, Taylor HA, Tomori C, Coleman JS. Breastfeeding with HIV: an evidence-based case for new policy. J Law. 2019;47:152–60. https://doi.org/10.1177/1073110519840495.

    Article  Google Scholar 

  3. HHS. Panel on Treatment of HIV During Pregnancy and Prevention of Perinatal Transmission. Recommendations for Use of Antiretroviral Drugs in Transmission in the United States. https://clinicalinfo.hiv.gov/sites/default/files/guidelines/documents/Perinatal_GL.pdf (2021). Accessed 1 Feb 2022.

  4. HHS. Infant Feeding for Individuals with HIV in the United States | NIH. https://clinicalinfo.hiv.gov/en/guidelines/perinatal/infant-feeding-individuals-hiv-united-states?view=full (2023).

  5. World Health Organization (WHO). Breastfeeding. https://www.who.int/health-topics/breastfeeding#tab=tab_2 (2022). Accessed 23 Jan 2022.

  6. WHO, The United Nations Children’s Fund (UNICEF). Guideline Updates on HIV and Infant Feeding: The Duration of Breastfeeding and Support from Health Services to Improve Feeding Practices among Mothers Living with HIV. https://www.ncbi.nlm.nih.gov/books/NBK379872/ (2016). Accessed 25 Jan 2022.

  7. Greene S, Ion A, Elston D, et al. Why aren’t you breastfeeding?”: How mothers living with HIV talk about infant feeding in a “breast is best. World Health Care Women Int. 2015;36(8):883–901. https://doi.org/10.1080/07399332.2014.888720.

    Article  PubMed  Google Scholar 

  8. Tuthill EL, Tomori C, van Natta M, Coleman JS. “In the United States, we say, ‘no breastfeeding’, but that is no longer realistic”: provider perspectives towards infant feeding among women living with HIV in the United States. J Int AIDS Soc. 2019;22(1):e25224. https://doi.org/10.1002/jia2.25224.

    Article  PubMed  PubMed Central  Google Scholar 

  9. Yusuf HE, Knott-Grasso MA, Anderson J, et al. Experience and outcomes of breastfed infants of women living with HIV in the United States: findings from a single-center breastfeeding support initiative. J Pediatr Infect Dis Soc. 2022;11(1):24–7. https://doi.org/10.1093/jpids/piab116.

    Article  Google Scholar 

  10. Koay WLA, Rakhmanina NY. Supporting mothers living with HIV in the United States who choose to breastfeed. J Pediatr Infect Dis Soc. 2022;11(5):239. https://doi.org/10.1093/jpids/piac005.

    Article  Google Scholar 

  11. Yudin MH, Kennedy VL, MacGillivray SJ. HIV and infant feeding in resource-rich settings: considering the clinical significance of a complicated dilemma. AIDS Care. 2016;28(8):1023–6. https://doi.org/10.1080/09540121.2016.1140885.

    Article  PubMed  Google Scholar 

  12. Phillips JC, Etowa J, Hannan J, Etowa EB, Babatunde S. Infant feeding guideline awareness among mothers living with HIV in North America and Nigeria. Int Breastfeed J. 2020;15(1):27. https://doi.org/10.1186/s13006-020-00274-z.

    Article  PubMed  PubMed Central  Google Scholar 

  13. Horwood C, Jama NA, Haskins L, Coutsoudis 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):e12726. https://doi.org/10.1111/mcn.12726.

    Article  PubMed  Google Scholar 

  14. Waldron EM, Burnett-Zeigler I, Wee V, et al. Mental health in women living with HIV: the unique and unmet needs. J Int Assoc Provid AIDS Care. 2021;20:1–18. https://doi.org/10.1177/2325958220985665.

    Article  Google Scholar 

  15. Mokwena KE, Mbatha NL. Social and demographic factors associated with postnatal depression symptoms among HIV-positive women in primary healthcare facilities, South Africa. Healthcare. 2021;9(1):65. https://doi.org/10.3390/healthcare9010065.

    Article  PubMed  PubMed Central  Google Scholar 

  16. Tuthill EL, Maltby AE, Odhiambo BC, et al. “I found out i was pregnant, and i started feeling stressed”: a longitudinal qualitative perspective of mental health experiences among perinatal women living with HIV. AIDS Behav. 2021;25(12):4154–68. https://doi.org/10.1007/s10461-021-03283-z.

    Article  PubMed  PubMed Central  Google Scholar 

  17. Kapetanovic S, Dass-Brailsford P, Nora D, Talisman N. Mental health of HIV-seropositive women during pregnancy and postpartum period: a comprehensive literature review. AIDS Behav. 2014;18(6):1152. https://doi.org/10.1007/s10461-014-0728-9.

    Article  PubMed  PubMed Central  Google Scholar 

  18. Momplaisir F, Hussein M, Kacanek D, Brady K, Agwu A, Scott G, Tuomala R, Bennett D. Perinatal depressive symptoms, human immunodeficiency virus (HIV) suppression, and the underlying role of antiretroviral therapy adherence: a longitudinal mediation analysis in the IMPAACT P1025 cohort. Clin Infect Dis. 2021;73(8):1379–87. https://doi.org/10.1093/cid/ciab416.

    Article  PubMed  PubMed Central  Google Scholar 

  19. Hegarty T, McGrath CJ, Singa B, Kinuthia J, John-Stewart G, Pintye J. Postpartum depression and prevention of mother-to-child transmission of HIV in Kenya. J Assoc Nurses AIDS Care. 2019;30(6):675–81. https://doi.org/10.1097/JNC.0000000000000088.

    Article  PubMed  PubMed Central  Google Scholar 

  20. Stewart DE, Vigod S. Postpartum depression. N Engl J Med. 2016;375(22):2177–86. https://doi.org/10.1056/NEJMcp1607649.

    Article  PubMed  Google Scholar 

  21. Centers for Disease Control and Prevention (CDC). Prevalence of Selected Maternal and Child Health Indicators for District of Columbia, Pregnancy Risk Assessment Monitoring System (PRAMS). https://www.cdc.gov/prams/prams-data/mch-indicators/states/pdf/2020/District-Columbia-PRAMS-MCH-Indicators-508.pdf (2020). Accessed 23 Feb 2023.

  22. Kendig S, Keats JP, Camille Hoffman M, et al. Consensus bundle on maternal mental health: perinatal depression and anxiety. Obstet Gynecol. 2017;129(3):422–30. https://doi.org/10.1097/AOG.0000000000001902.

    Article  PubMed  PubMed Central  Google Scholar 

  23. Fairbrother N, Young AH, Janssen P, Antony MM, Tucker E. Depression and anxiety during the perinatal period. BMC Psychiatry. 2015;15:206. https://doi.org/10.1186/s12888-015-0526-6.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  24. Zhu QY, Huang DS, da Lv J, Guan P, Bai XH. Prevalence of perinatal depression among HIV-positive women: a systematic review and meta-analysis. BMC Psychiatry. 2019;19(1):330. https://doi.org/10.1186/s12888-019-2321-2.

    Article  PubMed  PubMed Central  Google Scholar 

  25. Murphy DA, Marelich WD, Armistead L, Herbeck DM, Payne DL. Anxiety/stress among mothers living with HIV: effects on parenting skills and child outcomes. AIDS Care. 2010;22(12):1449–58. https://doi.org/10.1080/09540121.2010.487085.

    Article  PubMed  PubMed Central  Google Scholar 

  26. Knettel BA, Mwamba RN, Minja L, Goldston DB, Boshe J, Watt MH. Exploring patterns and predictors of suicidal ideation among pregnant and postpartum women living with HIV in Kilimanjaro, Tanzania. AIDS. 2020;34(11):1657–64. https://doi.org/10.1097/qad.0000000000002594.

    Article  PubMed  Google Scholar 

  27. Johnson G, Levison J, Malek J. Should providers discuss breastfeeding with women living with HIV in high-income countries? An ethical analysis. Clin Infect Dis. 2016;63(10):1368. https://doi.org/10.1093/cid/ciw587.

    Article  PubMed  Google Scholar 

  28. 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. https://doi.org/10.1177/0890334419886565.

    Article  PubMed  Google Scholar 

  29. Tariq S, Elford J, Tookey P, 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. https://doi.org/10.1136/sextrans-2015-052224.

    Article  PubMed  Google Scholar 

  30. Dunkley E, Ashaba S, Burns B, et al. “I beg you…breastfeed the baby, things changed”: infant feeding Experiences among Ugandan mothers Living with HIV in the context of evolving guidelines to prevent postnatal transmission. BMC Public Health. 2018. https://doi.org/10.1186/s12889-018-5081-x.

    Article  PubMed  PubMed Central  Google Scholar 

  31. Cox JL, Holden JM, Sagovsky R. Detection of postnatal depression. Development of the 10-item Edinburgh postnatal depression scale. Br J Psychiatry. 1987;150:782–6. https://doi.org/10.1192/bjp.150.6.782.

    Article  CAS  PubMed  Google Scholar 

  32. Matthey S, Barnett B, Kavanagh DJ, Howie P. Validation of the Edinburgh postnatal depression scale for men, and comparison of item endorsement with their partners. J Affect Disord. 2001;64(2–3):175–84. https://doi.org/10.1016/s0165-0327(00)00236-6.

    Article  CAS  PubMed  Google Scholar 

  33. Montazeri A, Torkan B, Omidvari S. The Edinburgh Postnatal Depression Scale (EPDS): translation and Validation Study of the Iranian Version. BMC Psychiatry. 2007. https://doi.org/10.1186/1471-244x-7-11.

    Article  PubMed  PubMed Central  Google Scholar 

  34. Rasmussen A, Eustache E, Raviola G, Kaiser B, Grelotti DJ, Belkin GS. Development and validation of a Haitian creole screening instrument for depression. Transcult Psychiatry. 2014;52(1):33–57. https://doi.org/10.1177/1363461514543546.

    Article  PubMed  PubMed Central  Google Scholar 

  35. Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research Electronic Data Capture (REDCap)—a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42(2):377–81. https://doi.org/10.1016/j.jbi.2008.08.010.

    Article  PubMed  Google Scholar 

  36. Harris PA, Taylor R, Minor BL, Elliott V, Fernandez M, O’Neal L, et al. The REDCap Consortium: building an international community of software platform partners. J Biomed Inform. 2019. https://doi.org/10.1016/j.jbi.2019.103208.

    Article  PubMed  PubMed Central  Google Scholar 

  37. HHS. Antiretroviral Management of Newborns with Perinatal HIV Exposure or HIV Infection: NIH. https://clinicalinfo.hiv.gov/en/guidelines/perinatal/antiretroviral-management-newborns-perinatal-hiv-exposure-or-hiv-infection (2021). Accessed 10 Dec 2022.

  38. Centers for Disease Control and Prevention (CDC). Monitoring Selected National HIV Prevention and Care Objectives by Using HIV Surveillance Data—United States and 6 Dependent Areas, 2018. https://www.cdc.gov/hiv/pdf/library/reports/surveillance/cdc-hiv-surveillance-supplemental-report-vol-25-2.pdf (2020). Accessed 23 Jan 2022.

  39. R Core Team. R: A Language and Environment for Statistical Computing. R Foundation for Statistical Computing, Vienna, Austria. https://www.R-project.org/ (2022)

  40. Mora PA, Bennett IM, Elo IT, Mathew L, Coyne JC, Culhane JF. Distinct trajectories of perinatal depressive symptomatology: evidence from growth mixture modeling. Am J Epidemiol. 2009;169(1):24–32. https://doi.org/10.1093/aje/kwn283.

    Article  PubMed  Google Scholar 

  41. Ahmed A, Bowen A, Feng CX, Muhajarine N. Trajectories of Maternal Depressive and Anxiety Symptoms from Pregnancy to Five Years Postpartum and their Prenatal Predictors. BMC Pregn Childbirth. 2019. https://doi.org/10.1186/s12884-019-2177-y.

    Article  Google Scholar 

  42. The Well Project. BEEBAH (Building Equity, Ethics, and Education on Breastfeeding and HIV). https://www.thewellproject.org/hiv-information/beeebah-building-equity-ethics-andeducation-breastfeeding-and-hiv (2023). Accessed 21 June 2023.

  43. Etowa J, Etowa E, Nare H, Mbagwu I, Hannan J. Social determinants of breastfeeding preferences among Black mothers living with HIV in two North American cities. Int J Environ Res Public Health. 2020;17:1–13. https://doi.org/10.3390/ijerph17186893.

    Article  Google Scholar 

  44. Borra C, Iacovou M, Sevilla A. New evidence on breastfeeding and postpartum depression: the importance of understanding women’s intentions. Maternal Child Health J. 2015;19(4):897–907. https://doi.org/10.1007/s10995-014-1591-z.

    Article  Google Scholar 

  45. Toledo C, Cianelli R, Villegas Rodriguez N, de Oliveira G, Gattamorta K, Wojnar D, et al. The significance of breastfeeding practices on postpartum depression risk. Public Health Nurs. 2022;39(1):15–23. https://doi.org/10.1111/phn.12969.

    Article  PubMed  Google Scholar 

  46. Zhong Q, Gelaye B, Rondon M, Sánchez S, García P, Sánchez E, et al. Comparative performance of patient health questionnaire-9 and Edinburgh postnatal depression scale for screening antepartum depression. J Affect Disorders. 2014;162:1–7. https://doi.org/10.1016/j.jad.2014.03.028.

    Article  PubMed  Google Scholar 

  47. CDC. Jurisdictions. https://www.cdc.gov/endhiv/jurisdictions.html (2022). Accessed 28 Feb 2023.

  48. CDC. HIV and Perinatal Transmission: The Numbers. https://www.cdc.gov/hiv/group/pregnant-people/numbers.html (2022). Accessed 28 Feb 2023.

Download references

Acknowledgements

We express our sincere gratitude to the women living with HIV who participated in this study. We would also like to thank Heather Hoffman, PhD for advice provided for the methodology of this study. HIV Prevention and Treatment Services was supported by funding from the following Ryan White HIV/AIDS Program (RWHAP) awards: RWHAP Part A and MAI (22F013, FO-HAHSTA-PG-00113-020), RWHAP Part B (22F405, FO-HAHSTA-PG-00068-001), RWHAP Part D Title IV Women, Infants, Children and Youth and Affected Family Members AIDS Healthcare Federal Award (2 H12HA24875-10-00).

Author information

Author notes

  1. Leah R. Harris

    Present address: General Dynamics Information Technology, Washington, DC, USA

Authors and Affiliations

  1. Division of Infectious Diseases, Children’s National Hospital, Washington, DC, USA

    Leah R. Harris, Joanna W. Mareuil, Natella Y. Rakhmanina & Wei Li A. Koay

  2. Department of Biostatistics and Bioinformatics, The George Washington University Milken Institute School of Public Health, Washington, DC, USA

    Do H. Lee

  3. Department of Pediatrics, The George Washington University School of Medicine and Health Sciences, Washington, DC, USA

    Natella Y. Rakhmanina & Wei Li A. Koay

  4. Technical Strategies and Innovation, Elizabeth Glaser Pediatric AIDS Foundation, Washington, DC, USA

    Natella Y. Rakhmanina

  5. Children’s National Hospital, 111 Michigan Ave NW, West Wing Level 3.5 Suite 100, Washington, DC, 20010, USA

    Wei Li A. Koay

Authors
  1. Leah R. Harris
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Do H. Lee
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Joanna W. Mareuil
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Natella Y. Rakhmanina
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Wei Li A. Koay
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

All authors read, reviewed, edited, and approved the final article. LRH assisted with data collection and developed the original draft of the article, with the exception of the results that DHL drafted. DHL also contributed to the methodology and interpretation of findings. JWM contributed to data collection and the conceptualization of the overall study. WLAK provided technical expertise during revision and submission of the final article. NYR supervised the study and manuscript preparation.

Corresponding author

Correspondence to Wei Li A. Koay.

Ethics declarations

Conflict of interest

The views represented in this article are our own and do not represent those of RWHAP or Health Resources and Services Administration (HRSA). No authors have conflicts of interests or disclosures.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Appendix: Quality Improvement Breastfeeding Questionnaire

Appendix: Quality Improvement Breastfeeding Questionnaire

This is an anonymous survey. Results of the survey will be presented in aggregate data, with complete protection of individual anonymity. Completion of this survey is entirely voluntary.

Your Age (years):

Race

  1. a.

    American Indian or Alaska Native

  2. b.

    Asian

  3. c.

    Black or African American

  4. d.

    Caucasian

  5. e.

    Native Hawaiian or Pacific Islander

  6. f.

    Other Race

Country of birth:

History of previous breastfeeding

  1. a.

    Yes

  2. b.

    No

If yes, how many of your children did you previously breastfeed?

  1. a.

    One

  2. b.

    Two

  3. c.

    Three

  4. d.

    More than three

    1. 1.

      Did you ever discuss with a medical provider an option to breastfeed your infant during this pregnancy or after delivery?

      1. a.

        Yes

      2. b.

        No

      3. c.

        Not sure

    2. 2.

      If yes, with which medical provider(s) did you discuss an option to breastfeed your infant? Check all that apply.

      1. a.

        OB/GYN

      2. b.

        Pediatrician

      3. c.

        Family doctor

      4. d.

        HIV doctor

      5. e.

        Other

    3. 3.

      Currently in the US, we recommend additional tests and medications in infants of breastfeeding mothers living with HIV. Are you aware of this recommendation?

      1. a.

        Yes

      2. b.

        No

      3. c.

        Not sure

    4. 4.

      What factor(s) would influence your decision to NOT breastfeed your infant? Check all that apply.

      1. a.

        Potential disclosure of HIV status

      2. b.

        Risk for HIV transmission to infant

      3. c.

        Additional preventative HIV medications

      4. d.

        Additional blood testing

      5. e.

        Partner or family opinion

    5. 5.

      If you were to consider breastfeeding your infant, what factor(s) would motivate you to do so? Check all that apply.

      1. a.

        Mother–infant bonding

      2. b.

        Health benefits of breast milk

      3. c.

        Cultural traditions

      4. d.

        Support for medical provider

      5. e.

        Partner or family opinion

    6. 6.

      Does not breastfeeding your infant affect your feelings or emotions in any of the following ways?

      1. a.

        Sadness

      2. b.

        Depression

      3. c.

        Lack of empowerment

      4. d.

        Not sure

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Harris, L.R., Lee, D.H., Mareuil, J.W. et al. The Mental Health Effects and Experiences of Breastfeeding Decision-Making Among Postpartum Women Living with HIV. AIDS Behav 28, 1186–1196 (2024). https://doi.org/10.1007/s10461-023-04142-9

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10461-023-04142-9

Keywords

Search

Navigation