How birth workers can care for HIV-positive clients
Doulas play a critical role in preventing HIV. An estimated 1.2 million people live with HIV in the United States. About one out of four people living with HIV in the U.S. are women. And each year nearly 200 babies are born with HIV through perinatal transmission – HIV transmission from mother to child during pregnancy, labor and delivery, or breastfeeding. It is the most common route of HIV transmission in children but also very preventable. When HIV is diagnosed before or during pregnancy, perinatal transmission can be reduced to less than 1%.1
While we can celebrate the public health achievement that there has been a reduction in perinatal HIV transmission in the United States, there is still more work to be done; and doulas can be a part of this great work. June 27th is National HIV Testing Day. Encouraging prenatal HIV testing is one critical strategy—but a doula’s role doesn’t end there.
Doulas ensure that there is appropriate prenatal care for the mama. This should include prenatal HIV testing for women who do not know their status. For women living with HIV, prenatal care should include getting them the treatment they need for their own health and to prevent transmission to their baby. Because approximately 18% of all people with HIV do not know their HIV status, many women living with HIV may not know they are living with the virus. The Centers for Disease Control and Prevention (CDC) recommends routine, opt-out HIV testing for all persons aged 13–64 years in health care settings, including women during every pregnancy. In spite of that recommendation, among the mothers of infants with HIV reported to CDC from 2003–2007, only 62% had at least one prenatal visit, 27% were diagnosed with HIV after delivery, and only 29% received some antiretroviral medication during pregnancy.2 Doulas can help address these disparities for women living with HIV (WLHIV).
Additionally, many women living with HIV choose to have children—and some work with and seek out the assistance of doulas even before conception. Because misinformation and stigma is still highly prevalent around HIV and pregnancy, doulas can empower women with the tools and language to discuss getting pregnant with their HIV healthcare provider—and help to bridge the care of HIV healthcare provider and OB/midwife. There are resources for women living with HIV who are seeking information and planning to become pregnant.3
Pregnancy and birth can be overwhelming enough for an expecting mama, but add living with a chronic condition like HIV to these major life events and your support as a doula or birth worker becomes exponentially more important. Below you will find information to help support a woman living with HIV at various points in her journey to becoming a mother.
Women Living with HIV During Pregnancy and How a Doula/Birth Worker Can Help:
A mama may test positive during pregnancy. It’s common during one of the initial OB visits to test for HIV. If this happens, and you are already working with a mama, helping her locate several different kinds of support will help cradle her in a community of care as she prepares for a life and pregnancy with HIV.
Know that women living with HIV experience disproportionate rates of trauma and post-traumatic stress disorder (PTSD) compared to the general population of women:
- 55% have experienced intimate partner violence (IPV), twice the national rate;
- over 60% have been sexually abused, five times the national rate; and
- 30% have PTSD, six times the national rate.1
Finally, trauma and PTSD are associated with poorer health outcomes at each state of the HIV care continuum, including disengagement from care, non-adherence to treatment, and care that can result in medication failure, viral rebound, or delay achievement of viral suppression.4
Provider support – Ensure that she communicates with her OB and/or HIV Prenatal Specialist, and make sure she knows to connect her two specialists to coordinate care. These two specialties don’t often overlap.
Issues Around Disclosing HIV Status – If a mama tests positive in the early stages of pregnancy, she may be overwhelmed, to say the least. While there is not enough space in this blog to fully discuss disclosure issues, do know that it will always be the mother’s decision to disclose her status to anyone. If she has chosen to disclose to you, that remains within your confidence.
- Disclosure is such a stigmatizing issue that “45% of women living with HIV have experienced physical abuse as a consequence of disclosing their serostatus.”5
Keep a network of mental health providers: Because of the stigma and potential hesitancy to disclose to others, mama may lean more on her provider or you, her doula, during this time. Know when your role as a doula ends, and make sure your network includes professionals who can be more of a counselor or therapist for her.
REASSURE, REASSURE, and REASSURE mama that the chances of transmitting to her baby are VERY low with proper care and medication. Before effective treatment was available, about 25 percent of pregnant mothers living with HIV who didn’t breastfeed and did not receive HIV treatment in pregnancy passed the virus to their babies. Today, the risk of giving HIV to your newborn is below 1 percent with proper care and medication.6
- There will be plenty of providers and people out there who may judge a woman’s choice to become pregnant while living with HIV. Be as supportive as you can, reassure her that if she takes time for self-care and is adherent to her specialist’s medication directives, then she is doing everything she can to have a happy, healthy baby.
Peer support: Most likely, mama may feel extremely isolated in her situation and not know another woman living with HIV who is pregnant or has had a child. Reassuring her that she is not alone, and connecting her to others with shared experiences can provide her with a lot of hope and reassurance. Try connecting her to a local AIDS Service Organization or an online network, such as the blog, A Girl Like Me, where women share experiences of living with HIV, including HIV and pregnancy.
Helpful Information for Birth Workers – Special Considerations During Pregnancy and Birth:
Understanding some nuances of pregnancy for a woman living with HIV can help support mama during pregnancy, and also helps you work together to craft a birth plan or birth preferences.
- Encourage mama to stay healthy: In most cases, HIV will not cross through the placenta from mother to baby. If the mother is healthy in other aspects, the placenta helps provide protection for the developing infant. Factors that could reduce the protective ability of the placenta include in-uterine infections, a recent HIV infection, advanced HIV infection, or malnutrition.7
- Some of the more invasive tests (amniocentesis, chorionic villus sampling (CVS), and umbilical blood sampling) and certain procedures during delivery (such as invasive monitoring and forceps- or vacuum-assisted delivery) are not necessarily recommended for WLHIV, as they may increase the risk of transmission to baby.8
A scheduled cesarean delivery at 38 weeks to prevent perinatal transmission of HIV is recommended in the following situations:
- When a woman has a viral load greater than 1,000 copies/mL near delivery, and
- When a woman’s viral load is unknown.9
Because women living with HIV experience a disproportionately larger amount of intimate partner violence, or trauma in their lives, as a doula/birth worker, you should have some background or do some reading into pregnancy, birth, and trauma. When Survivors Give Birth: Understanding and Healing the Effects of Early Sexual Abuse on Childbearing Women, by Penny Simkin and Phyllis Klaus, is an excellent resource.
The Postpartum Period & Special Considerations for Women Living with HIV
As with any new mother, postpartum support can be incredibly beneficial. Post-partum depression and anxiety are especially common in this population. If you’re not trained as a postpartum doula, and you have a client with HIV, then include postpartum support in your network of referrals.
If you are trained as a postpartum doula, help mama create a postpartum plan that includes self-care and adherence to medication, also making sure baby is adhering to any prescribed treatment.
Breastfeeding is generally not recommended, as there is risk of transmitting the virus to baby. WLHIV are encouraged to bottle/formula feed their babies.
- Not being able to breastfeed may be something to mourn for the mother. Allowing her the time and space to do so and finding ways to get mama and baby to bond without breastfeeding will be a critical part of postpartum doula support.
- Offer helpful tips if mama does feel judgment or is questioned about formula feeding – this is a fantastic tip from the Positive Women’s Network:
- “If people hassle you about why you aren’t breastfeeding and you don’t want to share your HIV status with them, fair enough. You can simply say you are taking medications that aren’t compatible with breastfeeding.”
From Doula Spot: “When a doula is present, women report greater satisfaction with their birth experience.” We believe this should include support from a doula in knowing your HIV status, and if a mama is living with HIV, getting the care that she needs for herself and her baby.
Vignetta Charles, PhD is currently serving as Senior Vice President at AIDS United— where she is responsible for overseeing AIDS United’s strategic grant making and capacity building programs, spearheading efforts to measure and document program outcomes, and developing an expanded portfolio on the translation of science to community. She is an alumna of the University of California at Berkeley, the Harvard School of Public Health, and the Johns Hopkins Bloomberg School of Public Health. Her work experience is diverse and has led to the acquisition of a broad range of skills: conducting scholarly inquiry at academic institutions, evaluating national teen pregnancy prevention programs, assessing the effectiveness of black women’s health interventions in Boston, serving as the national health educator for the Commonwealth of Dominica, West Indies, initiating a teen pregnancy prevention portfolio for the William and Flora Hewlett Foundation, and coordinating prevention and youth development programs in both San Francisco and Oakland, California. Dr. Charles currently serves on the Presidential Advisory Council for HIV/AIDS where she advises the Administration and Health and Human Services on pressing issues related to ending the HIV/AIDS pandemic. She also serves on the Board of Directors of the Center for Health and Gender Equity (CHANGE) and the Sexuality Information and Education Council of the United States (SIECUS).
Stephanie Cruse is owner of MamaChakra, offering down-to-earth birth classes to help families feel confident for the birth they desire, and pre/postnatal yoga to help mamas feel strong and in-tune with their bodies. Stephanie is a Registered Yoga Teacher (RYT-200) and RPYT (Registered Prenatal Yoga Teacher) with the Yoga Alliance, and is certified through BirthWorks as a Childbirth Educator. MamaChakra serves the Northern Virginia and Metro DC Area. In a former professional life, Stephanie was Program Manager at AIDS United from 2010-2014, where she led the strategic growth, planning, coordination and implementation of initiatives addressing HIV/AIDS sector transformation in the U.S., women at risk for and living with HIV/AIDS, and HIV prevention and leadership development in Puerto Rico.
Krista Martel is currently serving as the Executive Director of The Well Project. She joined the organization in 2009 and has overseen the redesign and expansion of its online resources and advocacy programs, while exploring the role and impact technology can have in fighting HIV disease and stigma, specifically for women and girls. Krista began working in HIV education and advocacy in 1995, shortly after her sister was diagnosed with HIV. Struck by the amount of stigma attached to the disease, as well as the lack of available resources for women living with HIV at that time, Krista was inspired to focus her career on advocating for women living with HIV, reducing stigma, and providing easy-to-understand and culturally competent information to people living with HIV and their providers. Krista has witnessed the profound impact that access to information and an online network of support can have on the lives of women living with HIV, and their respective communities, and is driven to continually expand this reach and network across the globe. Krista is also a member of the Community Advisory Group for the CDC’s EMCT Stakeholder and Expert Panels group.
Find all of us on social media:
The Well Project
“HIV Among Pregnant Women, Infants, and Children.” Centers for Disease Control and Prevention. www.cdc.gov/hiv/risk/gender/pregnantwomen/facts/, (June 20, 2015). ↩
“HIV Among Pregnant Women, Infants, and Children.” ↩
“Pregnancy and HIV.” The Well Project. http://www.thewellproject.org/hiv-information/pregnancy-and-hiv, (June 18, 2015) ↩
“The Intersection of Women, Violence, Trauma and HIV,” AIDS United, http://www.aidsunited.org/data/files/Site_18/IntersectionofWomenViolenceTrauma3.pdf, (June 18, 2015) ↩
“Domestic Violence Affects Women Living with HIV at 2 Times National Rate; Trauma Increases Chances of Becoming Infected and Complicates Treatment,” AIDS United, http://www.aidsunited.org/news/?id=118, (June 18, 2015) ↩
“HIV Among Pregnant Women, Infants, and Children.” ↩
“HIV/AIDS During Pregnancy,” American Pregnancy Association, http://americanpregnancy.org/pregnancy-complications/hiv-aids-during-pregnancy/, (June 18, 2015) ↩
“Pregnancy and HIV,” The Well Project. ↩
9 “Preventing Mother-to-Child Transmission of HIV During Childbirth,” AIDSinfo, https://aidsinfo.nih.gov/education-materials/fact-sheets/24/70/preventing-mother-to-child-transmission-of-hiv-during-childbirth, (June 18, 2015) ↩