Walking together

2009-01-15 00:00

BEING pregnant and HIV-positive is a daunting experience but one that many mothers-to-be in South Africa are living through without the necessary health, psychological and social support — and with potentially devastating consequences for the health and wellbeing of both mother and child.

To measure the benefits of giving extra support to women entering the government’s prevention of mother-to-child transmission (PMTCT) programmes, a study was launched last year by the Human Sciences Research Council (HSRC) through its Sweetwaters office, one of the largest research sites in South Africa that concentrates on social-behavioural research, targeting children, youth and families in their communities.

Known as Project Masihambisane or “let’s walk together”, the randomised control trial will look at ways to improve both the reach and impact of PMTCT programmes. According to a 2006 UNAids stocktaking report on children and Aids, only 30% of the estimated HIV-infected pregnant women in South Africa received ARVs for PMTCT.

The project is directed by Tamsen Rochat, a clinical psychologist who has studied the effects of an HIV diagnosis during pregnancy on the mother’s social and psychological functioning and the way she relates to her baby. She said maternal depression is a critical issue in these contexts.

Rochat said that most women in South Africa learn their HIV status for the first time during an antenatal clinic visit, so their pregnancy, a time that usually gives rise to hopes and dreams, is associated with a potentially life-threatening illness.

Extra support for women under these circumstances is not a luxury and the HSRC study is investigating how support contributes to the success of the standard PMTCT programme.

The crux of the Masihambisane model is “mentor mothers” working in antenatal clinics within the existing PMTCT programme staff. The mentors, who are carefully chosen role models with relevant life experience and empathy, give assistance to HIV-positive mothers and their babies during pregnancy and the baby’s first year.

“The intervention uses information, mentoring and support to help women to understand their diagnosis and take control of their health and their lives,” said Rochat. “The idea is to empower women with practical knowledge and basic psychological and social support. The idea behind Masihambisane is that life, and this experience, is a journey and that challenges like HIV can be met with the support of others over time.”

The support by the mentoring mother “is practical”, says Rochat. “For example, the mentor mother gives advice on how a woman can tell her husband about her HIV status. The support is given in the context of woman-to-woman relationship, based on real life experience and positive role modelling.

At the point where basic health-care provision meets the complicated field of psychology, Rochat said the project has tried to simplify the tools of her discipline in order to enable people to acquire cognitive and behavioural skills. “It’s not necessarily a ‘dumbing down’ of psychology. But we’ve made concepts simple and attractive so that experienced women can engage new mums using psychological and social tools that help them to do so more effectively.”

A series of simple but effective teaching and learning materials have been designed for the project. These include a pregnancy health booklet and simple, picture-rich information cards which participants can take away to remind them about the important components of their pregnancy care. Some cards inform mothers how to apply for a child support grant, how to make a decision about breast-feeding and, importantly, how and when to take their medication. There’s also a prompt card the mother-to-be can carry with her to hospital for delivery which states that she is HIV-positive and lists the drugs she and her baby need to lessen the danger of the baby becoming infected.

While all materials used for the study have the Masihambisane logo on them, the HSRC is committed to making materials and tools freely available, with appropriate acknowledgement.

A cellphone system allows information for the study to be collected with minimal cost and infrastructure from participating clinics as far afield as Bruntville in the north and Ndaleni in the south. Using cellphones and SMSes, field staff send the data through to a centralised database. This component is led by Alastair van Heerden, whose work in the HSRC is on the innovative use of cellphones in health-care research. With the support of a service organisation, Mobile Researcher, the study uses a virtual data centre where “the clinic and participant data are uploaded in real time. This is a powerful research tool and an exciting development for the field of health information and intervention research, particularly in Africa,” said Van Heerden.

“There’s no need any more to tie people to a desk,” said Rochat. “Virtually all sites, no matter how rural, have cellphone coverage today. Data arrives on site immediately and we can manage the study from far away with ease. “Alastair’s work on the mobile data system opens up exciting possibilities for health information systems,” said Rochat. “Health systems face great challenges, but we have developed a very supportive partnership with district offices, and with the municipal services in Msunduzi and uMgeni.”

“Over the duration of the study, we will be able to establish whether fewer babies become infected with HIV,” said Rochat, “but we will also be assessing how often the mother visits the clinic, her parenting capacity, whether she practises safe sex and has more knowledge to ensure her own and her baby’s health.” The assessment will also take into account the mother’s mental health as well as the baby’s development. Results of the trial should be available in 2010.

Rochat believes that if the study proves that extra support translates into healthier families, it could open the way for greater co-operation between non-governmental organisations, many of which are already providing support services to women, and the Department of Health.

“The Department of Health can’t do it alone,” said Rochat. “Ideally, the necessary support for mothers shouldn’t be separate from existing clinic activities. We need to improve the standard of care by complementing health services.”

How does Masihambisane work?

• With funding from the National Institute of Mental Health and in collaboration with the Department of Psychiatry at the University of California, Los Angeles, and the Health Department, Masihambisane has been launched in eight clinics currently delivering the standard PMTCT programme in both the uMgungundlovu and eThekwini districts.

• The HSRC has provided “park homes” in Balgowan and Woodlands out of which the project and antenatal care services run, and which are donated to the Department of Health.

• Participants in four clinics will be exposed to the mentoring-mother support programme, while the remaining four will act as controls.

• Small groups of HIV-positive mothers-to-be led by a “mentoring mother” meet eight times, four times before and four times after delivery and in co-ordination with standard clinic visits.

• The women are encouraged to share their feelings and build a peer support network with women in similar circumstances. They are given support to disclose their status to the people closest to them, so they can get the help they need in pregnancy and the early years of their child’s life. The mothers are encouraged to care for their physical and mental health during pregnancy.

• During the post-natal period, the focus shifts to parenting.

• Information on all aspects of pregnancy and treatment is distributed to all PMTCT participants, including those in control sites.

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