An estimated 1.4 million pregnant women are women living with HIV (WLH) in low and middle income countries (LMIC) [1
]. South Africa has the highest total number of people living with HIV (5.7 million), of whom 3.2 million are women [1
] and more than 200,000 are pregnant WLH in need of antiretrovirals [2
]. The national HIV prevalence has stabilised around 11% [3
], with the highest rates in the Kwa-Zulu-Natal and Gauteng Provinces. Up to 40-60% of pregnant women in Kwa-Zulu-Natal are HIV positive [4
]. Antiretroviral (ARV) medications can reduce HIV transmission to less than 2% at childbirth and exclusive breastfeeding for six months also minimizes risk of transmission [5
]. Therefore, effective programs to prevent mother-to-child transmission (PMTCT) for WLH in South Africa are urgently needed.
The goal of this cluster randomized controlled trial (RCT) is to evaluate a clinic-based strategy for increasing uptake of PMTCT and to improve maternal health behaviors over time. The Masihambisane
program is leveraging the unique intervention opportunities created by pregnancy. Pregnancy requires mothers to adopt new routines and behaviors. HIV, alcohol and nutrition are linked to daily behaviors and habits, which are significantly easier to shift during life transitions compared to periods of stable living [6
]. The birth of a child is a major life transition as relationships become reordered and there are changes in sleeping, eating, socializing, and working patterns. This creates the opportunity for "upstream" programming of new attitudes and behaviours [6
WLH's experience of HIV-related stigma is often associated with poor antenatal and postnatal adherence to HIV-related regimens and healthy lifestyles [7
]. Having a peer for support at the time of diagnoses who also introduces and supports health regimens (e.g., ARV medication adherence, exclusive breastfeeding) can be emotionally powerful [9
]. There is a history of peer self-help interventions in LMIC that utilize peer advocates, including Alcoholics Anonymous [10
], Widow-to-Widow [11
], and community popular opinion leaders [12
]. The mothers2mothers programme (m2m) is an HIV perinatal support program that initiated placing WLH as Peer Mentors in clinics beginning in 1990 http://www.m2m.org
. The Masihambisane Project builds on the m2m programme by systematically training the Peer Mentor WLH to support PMTCT goals.
PMTCT programs typically focus on three biomedical interventions: maternal HIV testing; ARV provision in preparation for and during childbirth; and infant ARV medication adherence for six weeks until infant serostatus is established by PCR testing [5
]. While ARV treatment is highly effective, only 21% of pregnant women in LMIC were tested for HIV in 2008, and fewer than half of those testing seropositive received ARV medication [1
]. Beginning in 2001 [13
], routine PMTCT has been available in South Africa. By 2007/08, 81% of pregnant women attending public antenatal clinics in South Africa had been tested. However, Kwa-Zulu-Natal has the lowest levels of testing at 71% [14
]. Of the women tested for HIV, about a third do not receive their test results [3
]. In 2007, 76%
of pregnant WLH who did receive their test results received Nevirapine (NVP) during labour, while 57% of infants received NVP at birth [13
Health service coverage for women and children in South Africa is good, as 92% of pregnant women have access to antenatal care [15
]. Women generally begin antenatal care prior to the third trimester (54%), and 89% of babies are born in a health facility [15
]. While full implementation of all public health innovations takes time [17
], South Africa has many components in place to eliminate the vertical transmission of HIV.
However, prevention of HIV transmission and the continued well-being of the mother, child and family involve much more than HIV testing and ARV regimes. Receiving an HIV diagnosis during pregnancy often elicits feelings of anxiety, depression and social isolation [18
]. Poor mental health and a lack of social support are, in turn, associated with decreased uptake of ARV, decreased adherence to ARV medication, and faster disease progression [21
]. In addition to decreased social support and mental health, WLH face numerous challenges throughout the perinatal period. Women's antenatal clinic records do not follow them to the delivery centre, requiring the disclosure of HIV status to nurses in order to receive ARV medication.
Similar challenges occur at the post-birth medical appointment and the six week follow-up for infant HIV testing. Results of the baby's HIV status often take weeks or months to be available, requiring multiple maternal visits to the well-baby clinic. Co-trimoxazole is administered to 8% of infants under two months of age who are exposed to maternal HIV, but where status is not identified [23
]. In addition to health concerns, a WLH must decide whether, when, and to whom she will disclose her HIV status. In particular, she must decide whether to disclose to her sexual partner, and how to encourage him to be tested for HIV.
In addition to HIV, WLH face intersecting epidemics of alcohol and malnutrition. South Africa has the highest documented rate of Fetal Alcohol Syndrome (FAS) globally [24
], and the rate has been increasing [25
]. Although health services should address alcohol and nutrition problems, South African antenatal programmes do not include standard screening or counselling of pregnant women regarding alcohol use. Even though vitamin supplements and folic acid are provided to enhance nutrition through antenatal care, 17% of babies are less than 2500 grams, 24% are stunted and/or malnourished under the age of 5 years old, resulting in lifelong negative health outcomes [26
]. Co-morbid alcohol use and depression negatively impact infant birth weights [27
] and in South African townships, post-partum depression rates exceed 30% [28
]. Even low levels of maternal alcohol consumption are related to negative developmental sequelae [29
]. Most South Africans consider more than one antenatal care visit unnecessary [30
], therefore WLH are unlikely to receive the information, skills, and support needed to consistently maintain healthy routines for themselves or for their child.
The current project examines the effectiveness of paraprofessional community health workers, Peer Mentors
(PM) to help WLH in the intervention to cope with a range of health and mental health challenges. Peer Mentors are WLH who have been through PMTCT and are themselves thriving, based on the theory of positive peer deviants [31
]. Training of the Peer Mentors focuses on existing evidence-based HIV, child health, mental health and alcohol-related interventions [9
]. The Masihambisane Project
, which means "we walk together" in Zulu, was initiated to test the effectiveness of a Peer Mentor programme in improving the health and well-being of WLH and their babies in PMTCT services provided by the public sector [35
] in a very high seroprevalence area.