Introduction and global overview
It is estimated around 1.5 million women with HIV give birth annually. Worldwide, HIV is the leading cause of death among women of reproductive age. In 2013, 54% of women, particularly in low- and middle-income countries, did not receive an human immunodeficiency virus (HIV) test in the antenatal period, an important step in prevention of mother-to-child transmission.[i] Without treatment one third of children with HIV die before their first birthday and half die by their second birthday.
In Australia, universal HIV testing is recommended for all pregnant women in the antenatal period, and supported by both the National HIV Testing Policy and The Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG).
The benefits of a woman knowing her HIV status during pregnancy include the opportunity for her to receive appropriate medical care for both herself and to prevent onward transmission of the virus to her unborn baby. There is the added benefit of prevention of transmission to any future partners or children.
In Australia, with appropriate monitoring, treatment and support the risk of transmission is now below 1%, while in resource poor settings, transmission though pregnancy, birth and breastfeeding may be as high as 40%.
There are still an estimated 240 000 children worldwide who acquire HIV annually and the World Health Organization cites the main reasons for this as being limited access to sexual, reproductive and HIV health services for women; limited access to HIV treatments; failure to prioritise children and poor integration of health services.
Since 2004, 357 known HIV-positive women have given birth in Australia. In this cohort, five HIV-positive infants were born. At the same time, 14 women whose HIV status was not known in the antenatal period, gave birth to babies, of whom seven subsequently were found to be HIV positive. These data highlight the need for continuing vigilance and rigorous HIV testing in the antenatal period.
A multidisciplinary model is the best way to meet the needs of this small, but often complex group of pregnant women, in order to achieve best outcomes for both mothers and babies.
The multidisciplinary model ( Figure 1) illustrates the range of specialist programs that may need to be involved in a woman’s antenatal, during birth and beyond. It places the woman at the centre of the model; she may need all or only some of the available resources, depending on her age, ethnicity, religion, culture, overall health, migration experience or previous engagement with health services. Each woman and her situation are unique and care must be tailored to meet each woman's needs in a holistic and culturally sensitive manner.
Effective care coordination for an HIV-positive pregnant woman is paramount. Without a coordinated, cohesive model, the risk is in women not engaging in care or being lost to follow-up, having suboptimal adherence to antiviral medication and risking transmission of the virus to her unborn child.
Ideally, the pregnant woman should have HIV care in an integrated way, a one-stop shop where she can see obstetric services and HIV services at one location with allied health professionals available on-site to deal with any social or psychosocial issues that may arise.
In this way, improved engagement of the woman in her care is achieved; there is enhanced communication across disciplines leading to optimal outcomes.
Care coordination can be nurse led in this model - it is cost-effective and provides a constant point of reference for the woman and for other health professionals who may be involved during the pregnancy and beyond.
Care and support
If a woman is diagnosed with HIV during routine antenatal screening, she will undoubtedly have a number of conflicting emotions and stressors affecting her. At this time, nursing support becomes critical. The woman and her partner may need support and guidance both in terms of adjustment to a new illness, while also dealing with their pregnancy.
Many issues may come up: confusion, guilt, anxiety, fear of transmission to the unborn child - all of these will require sensitive handling and support at this transitional stage. The nurse is in an ideal position to link the woman, and her family if necessary, to appropriate counselling, peer support, culturally-specific care and provide the education needed to overcome any initial problems around time of diagnosis. The nurse can also be the key player in advocacy for the woman when dealing with outside agencies or other health facilities.
In principle, the nurse should support the mother to:
- make informed choices about pregnancy care
- make informed choices around treatment choices
- have intensive HIV monitoring to ensure that the HIV viral load is at an undetectable level
- choose how, when and where her baby is born (in collaboration with other health professionals)
- have the best information on care for herself and her baby through pregnancy and beyond
- ensure optimal adherence to her prescribed antiviral agents
- ensure attendance at appointments and avoid loss to follow-up after the birth.
To achieve these principles, the nurse may find that the woman needs assistance to navigate a complex health system, with competing priorities. Appointments and procedures are best streamlined as much as possible to avoid unnecessary hospital visits and stress; this becomes particularly important if the woman has other children to care for with competing parenting demands.
It is in the education arena that the strength of a nurse-led model of care becomes clear. A nurse with experience in caring for women with HIV in pregnancy can help to educate not only the woman and her significant others, but the wider health and allied health community caring for her.
This can take the form of formal education sessions, provision of written material, mentoring of less experienced staff, developing Nursing Care Plans and serving as a resource for other nurses and midwives as required.
Education is important to breaking down preconceived or ill-informed ideas that individuals may have about HIV. A supportive and open manner helps provide the best environment for a pregnant woman to thrive in during her pregnancy.
There are many valuable resources that can be accessed for use in education about HIV in pregnancy. Some useful and accessible resources are listed below:
- The 2009 PENTA Guidelines for the use of antiretroviral therapy in paediatric HIV infection http://www.penta-id.org/hiv/penta-trials-treatment-guidelines.html (last updated 27 Feb 2015).
- Royal College of Obstetricians and Gynaecologists (UK). http://www.rcog.org.uk/
- Panel on Treatment of HIV-Infected Pregnant Women and Prevention of Perinatal Transmission. Recommendations for Use of Antiretroviral Drugs in Pregnant HIV-1-Infected Women for Maternal Health and Interventions to Reduce Perinatal HIV Transmission in the United States. Available at http://aidsinfo.nih.gov/contentfiles/lvguidelines/PerinatalGL.pdf
- British HIV Association (BHIVA). Guidelines for the management of HIV infection in pregnant women Available at: http://www.bhiva.org/pregnancy-guidelines.aspx
- HIV through breastfeeding, a look at available evidence, UNAIDS 2008
- HIV and Pregnancy Clinical Practice Guidelines for Managing HIV in Pregnancy, Childbirth and Post Partum. Available at: http://www.thewomens.org.au/