Obstetrician Mitch Besser realised that there were some challenges in his work to prevent mothers with HIV infection from passing the virus to their babies that would be difficult to overcome. Having recently moved to South Africa from the US, he didn’t have the right language skills or a full understanding of the culture he was working in. Pregnant women and new mothers needed explanations that he was simply not able to give. Quickly working out that the people best suited to providing these explanations were mothers who were similarly affected, Dr Besser asked some of his former patients to help. These mothers sat in on consultations, helped to interpret, and explained testing and treatment to women coming to his clinic at Groote Schuur hospital in Cape Town.
What started as a few mothers providing education and support to their peers has now evolved, 10 years on, into an international programme operating on 589 sites in seven countries. mothers2mothers (m2m), the organisation established by Mitch Besser and colleagues to develop this model of peer education and psychosocial support, now employs 1457 mentor mothers.
In rich countries, new cases of HIV in children have been virtually eliminated. Effective care to prevent mother-to-child transmission—comprising HIV testing, antiretroviral treatment and prophylaxis for mothers and babies, and safe infant feeding—can reduce the risk of a mother passing the virus to her baby to less than 5%. Yet, every day in Africa 1000 babies are born with HIV, and only just over half (53%) of pregnant women in poor and middle income countries receive antiretroviral drugs to prevent HIV transmission.
Last year UNAIDS sets out targets to reduce, by 2015, the number of new HIV infections by 90% and the number of AIDS related maternal deaths by 50%.1 Although its global plan covers all low and middle income countries, it focuses on the 22 countries (all but India are in sub-Saharan Africa) that are home to nearly 90% of pregnant women with HIV infection. Clearly, the challenges are much greater in countries where provision and uptake of antenatal and perinatal services is poor. More than 90% of pregnant women access antenatal care in South Africa,2 whereas in Ethiopia it is only 28%.3 The average across Africa is 72%.3
In poorer countries weak health systems and severe shortages of health workers hamper efforts to tackle mother-to-child transmission. The global plan highlights the need to rethink how health systems work in these situations, urging countries to decentralise HIV services to the primary care and community levels and to consider shifting HIV related tasks from, for example, doctors to nurses or from nurses to community health workers.
A variety of social and economic factors can also lead to poor uptake of services, as Dr Besser found in South Africa. “I became aware that the gaps that I was experiencing personally were present throughout the healthcare system,” Dr Besser explains. “Women were not electing to undergo HIV testing because they were fearful about stigma. They didn’t understand how to take the medicines that they were given, they didn’t understand how to feed their babies properly to prevent HIV transmission, and the nurses frankly didn’t have the time to give the explanations.”
mothers2mothers recruits and trains mothers with HIV to be part of the healthcare team providing maternity care in under-resourced health systems. Mentor mothers explain what the results of HIV and CD4 tests mean, reinforce instructions on taking antiretroviral drugs (for mothers and babies), and offer advice on infant feeding. They also help to educate women about family planning and encourage them to deliver their babies in healthcare facilities.
“The mentor mothers are professionalised and highly trained,” says Dr Besser. The two week initial training covers basic medical knowledge about HIV infection, treatment, and prevention; infant feeding; counselling methods; strategies for negotiating safer sex; and nutritional advice. The women, who are paid salaries equivalent to those of community health workers, also receive annual refresher training. “In many cases, because they are trained so well and re-trained every year, they become references for the doctors and nurses with whom they work. There is an irony that the women who were once patients, receiving care from these doctors and nurses, have become specialists giving them guidance and advice.”
Patty Brooks, a mother of two, explains how mentor mothers work in Paarl, in South Africa’s Western Cape, where she is the mothers2mothers site coordinator. The day starts with mentor mothers giving a general health talk in the clinic waiting room, covering issues around prevention and HIV testing. While women go for blood tests, mentors give some initial support so that each woman “knows she is not alone and that we are there to help her, however we can.” Women who test negative are given some prevention advice, while those who test positive are invited to enrol in the programme to receive individual advice and group support. Afternoons are usually taken up with support groups. Women “get together to ask questions, share their feelings, and meet other HIV positive mums who are living healthy lives,” explains Mrs Brooks.
An important part of the mentor mothers’ work is tackling the stigma associated with HIV and helping women to disclose their HIV status to those close to them. Mrs Brooks knows all about stigma. “In the beginning, when people saw me in the hospital with a client or a mentor mother they would make remarks like, ‘There go the AIDS people,’ but with education and my positive attitude it gradually changed,” she recalls. Talking to Mrs Brooks, it is not hard to believe that her upbeat attitude would rub off on other women with HIV. “My mind set is that I refuse to be defined by this virus.”
Dr Besser and his colleagues raised private funds to expand the mothers2mothers programme. The organisation worked in partnership with local health services but ran the mother mentoring programmes directly. By 2004, mothers2mothers had expanded to 31 sites in South Africa. The initiative was then able to attract support from larger funders, including the US President’s Emergency Plan for AIDS Relief (PEPFAR). The fact that the programme captured the attention of a diverse group of political leaders and celebrities—from Laura Bush to David Beckham—helped raise the profile. By 2007, the programme was running in six other African countries. Four years later, UNAIDS’ global plan to eliminate paediatric HIV by 2015 embraced the concept of mentor mothers.1
The speed and extent of the expansion of the mothers2mothers programme is remarkable, even more so because there are relatively few published hard data on its effectiveness. A 2007 external evaluation in KwaZulu-Natal by the Horizons Program and Health Systems Trust showed some encouraging results.4 Pregnant women and mothers participating in the programme had better psychosocial outcomes than those not in the programme. Participating mothers were more likely to have taken nevirapine or to have received it for their baby, to have had CD4 testing, and to know their CD4 count, than non-participants. However, the study, based on self reported data collected through two cross-sectional surveys involving a total of 1056 women, was not randomised. To date, there has been no assessment of whether participation in the mothers2mothers programme reduces mother-to-child transmission of HIV. Dr Besser is aware that a great deal more needs to be done in terms of measuring the programme’s outputs, impact, and cost effectiveness.
Having expanded the programme by directly providing services, the organisation is now adopting a new approach, focusing instead on supporting governments and local partners to provide mentor mother services. The Kenyan government, for example, is committed to implementing a national mentor mother programme and mothers2mothers will work with the government to support this. The organisation intends to scale back its own service provision, concentrating on a few model sites that will be used for training and testing new innovations.
Achieving the UNAIDS goal of eliminating HIV in children is a real possibility. But Dr Besser thinks it is important to keep focused. “We are so close to the finish line in terms of being able to eliminate paediatric HIV that governments and donors, and in many respects, the public, must not lose sight,” he says. “I think the biggest threat we face right now is almost a sense of complacency that this problem is behind us.”
Cite this as: BMJ 2012;344:e1590
Competing interests: The author has completed the ICJME unified disclosure form at www.icmje.org/coi_disclosure.pdf (available on request from the corresponding author) and declares no support from any organisation for the submitted work; no financial relationships with any organisation that might have an interest in the submitted work in the previous three years; and no other relationships or activities that could appear to have influenced the submitted work.
Provenance and peer review: Commissioned; not externally peer reviewed.