Using a Person-Centred Approach to Preventing Perinatal HIV Transmission
Written by: Aimee Rendell
The use of accurate and inclusive language is essential to providing accessible and comprehensive health care. Many people with uteri are capable of carrying pregnancies, including women, transgender men, and non-binary people. This article has been constructed using gender-inclusive language when referring to pregnant people and their experiences. The use of this language in practice is encouraged, with endorsement from peak medical bodies including RANZCOG.
According to the World Health Organization, an estimated 1.3 million people living with HIV (PLHIV) become pregnant globally each year1. Without intervention, the risk of perinatal transmission of HIV – transmission from pregnant person to neonate during pregnancy, childbirth, or breastfeeding – is 25% to 30%2. However, with timely access to antiretroviral therapies (ART) and the achievement of viral suppression either prior to, or during pregnancy, the risk of perinatal transmission can be <1%2. Despite advancements in HIV medical technologies, there remains significant barriers to reproductive and sexual health care for many PLHIV, and thus, to the prevention of perinatal transmission. The achievement of maintained virologic suppression using ART is paramount to achieving positive health outcomes for an individual and their neonate, however, there are a host of personal, social, and environmental factors that may influence an individual’s ability or willingness to adhere to medication and be retained in care. A holistic, person-centred approach to preconception, antenatal, and intrapartum and postpartum care is essential to ensuring the best health outcomes for PLHIV and in the mitigation of perinatal transmission.
Person-centred care involves the active participation of an individual in their healthcare, including decision-making processes. The Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM) outline four key components of person-centred HIV care:
- Centre a person’s autonomy, dignity, and rights
- Respect a person’s decisions and experiences
- Support a person to lead the dialogue about their health
- Build relationships grounded in understanding and trust
The outcomes of care should a combination of what is clinically assessed best for the individual and what they feel is best for them. This is best achieved with a multidisciplinary care team, providing culturally safe and accessible support across all aspects of their health and wellbeing3.
Reproductive decision-making can be complex, with choices influenced by many personal, social, and cultural expectations. Greater complexity can arise for PLHIV who may be pregnant or considering pregnancy. Huertas-Zurriaga et al states “a [person’s] desire to have children is not influenced by their HIV diagnosis, but their ability to act upon this desire is blocked by the stigma resulting from the negative attitudes of people in their lives”4. Misinformed ideas on the inability of a PLHIV to conceive and carry a healthy pregnancy by society and healthcare providers alike, have limited the available reproductive options for PLHIV, with some people reporting being entirely discouraged from pregnancy altogether4. Similarly, PLHIV have been advised not to breastfeed despite Australian guidelines outlining risk reduction approaches should a parent choose to breastfeed their infant5. For PLHIV born in countries with high HIV prevalence, the medical and social advice provided around HIV and childbearing may differ to that available in Australia. Many PLHIV report a loss of trust and confidence in the healthcare system due to experiences of prejudice and discrimination from providers5. The absence or breakage of a patient’s trust in the healthcare system may result in disengagement from services and poor adherence to ART. Such negative experiences have discouraged some PLHIV from disclosing their HIV status to their clinicians entirely1.
Healthcare providers are an essential source of information and support in reproductive decision-making, so it is important to make a conscious effort to establish trusting and understanding relationships with patients living with HIV. All patients carry their own experiences, values, and priorities regarding their health. The provision of all benefits, risks and alternatives regarding reproductive options and medication adherence without coercion or pressures enables PLHIV to make an informed decision about their health. This risk-reductionist approach respects a patient’s autonomy whilst providing support in a collaborative decision-making process. It is important to recognise the resilience PLHIV present and respect their ability to make the best decision for themselves when provided informed, accessible, and appropriate options, in a manner that is supportive and non-judgemental.
The provision of person-centred care should not occur in isolated events. Care should be a continued effort that takes many forms throughout both reproductive life, and life beyond this. This approach to care for PLHIV who are pregnant or considering their reproductive options is essential to their own health and to lower the risk of perinatal transmission. Every person has the right to access high quality, inclusive reproductive and sexual health care without experiences of judgement and prejudice.
- World Health Organization. Mother-to-child transmission of HIV [Internet]. Geneva: WHO; [date unknown]. Available from: https://www.who.int/teams/global-hiv-hepatitis-and-stis-programmes/hiv/prevention/mother-to-child-transmission-of-hiv
- The Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine. Mother-to-child transmission of HIV infection [Internet]. Sydney: ASHM; 2019. Available from: https://hivmanagement.ashm.org.au/natural-history-of-hiv-infection/mother-to-child-transmission-of-hiv-infection/
- The Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine. Multidisciplinary Care [Internet]. Sydney: ASHM; 2019.Available from: https://hivmanagement.ashm.org.au/pregnancy-and-midwifery-considerations-in-hiv/multidisciplinary-care/
- Huertas-Zurriaga A, Palmieri PA, Edwards JE, Cesario SK, Alonso-Fernandez S, Pardell-Dominguez L, Dominguez-Cancino KA, Leyva-Moral JM. Motherhood and decision-making among women living with HIV in developed countries: a systematic review with qualitative research synthesis. Reproductive health. 2021 Jul 10;18(1):148.Powell AM, Knott-Grasso MA, Anderson J, Livingston A, Rosenblum N, Sturdivant H, Byrnes KC, Martel K, Sheffield JS, Golden WC, Agwu AL. Infant feeding for people living with HIV in high resource settings: a multi-disciplinary approach with best practices to maximise risk reduction. The Lancet Regional Health–Americas. 2023 Jun 1;22.
- Leyva-Moral JM, Piscoya-Angeles PN, Edwards JE, Palmieri PA. The experience of pregnancy in women living with HIV: a meta-synthesis of qualitative evidence. Journal of the Association of Nurses in AIDS Care. 2017 Jul 1;28(4):587-602.