13 November 2012

Uganda: PMTCT - Good Strategy Afflicted By Stigma, Poverty and Poor Service Delivery

SHE was HIV-positive when she gave birth to her first child in 1996. And even though Peace Baguma knew the risks involved in breastfeeding, she did not have many choices.

"I breastfed my child normally," she says.

This was the case because then, the Prevention of Mother-to-Child Transmission (PMTCT) of HIV programme was not yet in place.

PMTCT is an initiative established in 2000 to provide care to pregnant mothers to reduce the transmission of mother to child transmission of HIV. It started as a pilot project in Nsambya and Mulago hospitals in Kampala as well as Arua and Lacor hospitals in Arua and Gulu respectively.

Mother-to-Child Transmission (MTCT) of HIV has always posed a serious threat to our society. According to the 2011 Uganda Demographic Health Survey, about 21% of HIV transmission is believed to be caused by Mother to Child Transmission of HIV.

The PMTCT programme was, therefore, a timely intervention especially in the face of the growing threat that is mother to child transmission. By the time Baguma gave birth to her second and third children in 2006 and 2009 respectively, PMTCT was available to a considerable number of HIV-positive mothers. She embraced it. Her children have turned out well and the last one is being weaned.

Despite the pockets of success, a number of challenges stand in the way of effective implementation of this programme. As she prepared for her second and third babies, Baguma recalls being treated with indifference by health workers on her visit to the labour ward. "When they found out that I was HIV-positive, the health workers became rude to me. They asked why I became pregnant when I knew my status," Baguma says. She recalls being neglected by midwives, 'who feared that they would get HIV by attending to me.'

Baguma had to change hospitals:

According to Baguma, the negative attitude of health workers to HIV-positive pregnant mothers has discouraged many young women from accessing antenatal services. Baguma's experience is shared by Gertrude Namasembe, a young mother of two children. "The so-called health workers supposed to help us only make life hard," she says. "Not only do they lack important information, they humiliate us and ignore us at our most critical hour of need."

Namasembe recounts how during labour, she was harassed by a health worker. "When I asked for nevirapine, the nurse enquired if I had HIV to which I answered in the affirmative. She became tough, accusing me of being promiscuous and careless with my life." This kind of treatment has discouraged many mothers from accessing the much-needed services. Namasembe did not receive anti-retroviral drugs (ARVs) while in labour and during breastfeeding.

Considering the World Health Organisation (WHO) advises that ARV regimens administered to mothers and/or infants during pregnancy and breastfeeding can reduce transmission to 1-8% at 6-12 months of age, this put the young mother and her baby at risk.

Lack of sufficient information on PMCT from health workers has affected the way that women handle their situations. When she had her second child, Baguma was supposed to carry out exclusive breastfeeding. But she was misled into using a bottle. "As a working mother, I had to pump milk into the bottle and then leave it behind for my baby." But then it did not work very well for her. "Sometimes the milk would go bad and I would return to find my baby hungry and crying. Other times, the mouth of the bottle would bruise my child's lips."

In retrospect, Baguma blames this on lack of adequate information from health workers. "If I had been guided well, I would not have taken chances."

Some mothers find it difficult to cope with a rigorous regime of PMTCT requirements. This is often brought about by poverty and lack of support from health workers and family members.

After the birth of her fourth child, Betty Najjemba, who had lived with HIV for over 10 years was advised to breastfeed exclusively. But she was frustrated by the demands. "One of the major requirements for exclusive breastfeeding is good feeding. But with three grown children to take care of and no stable source of income, I could not afford to buy the sufficient food required for adequate breast milk production," she says.

This brought a lot of pain to her and to her newborn baby. "My milk production was very low. My child often went hungry and became restless. He would cry throughout the night." This was very stressful for the mother. "My baby and I lost a lot of weight."

For a poor woman like Najjemba, proper nutritious food is quite expensive. A special pack of breast milk-inducing formula costs sh90,000 in supermarkets. Healthy cassava flour, also crucial for milk production, costs sh1,200 per kilo. For a poor woman, buying such expensive foods can be daunting.

Family support, particularly from spouses, is crucial for mothers undergoing PMCTC programme. Sometimes, however, fathers do not help their wives.

At the time of weaning Najjemba's baby, it developed pneumonia. When she sought assistance from her partner, "he openly told me that he could not spend so much money on a child who did not have any chances for survival." Najjemba tried to talk him into attending PMTCT counselling with her in vain. "He never set foot there even once," she says, adding that he could not even buy food for her.

Najjemba says absence of men in PMTCT has slowed the programme's progress. Apart from negative attitudes by health workers, lack of information and low responsiveness from spouses, other issues abound. "Many mothers cannot easily access health facilities to get right information on PMTCT. Sometimes facilities are not sufficiently available in hospitals," says Betty Muhangi, a counsellor and co-ordinator of people living with HIV in Wakiso district.

Muhangi says most people still lack important updated information on PMTCT. "For instance, many mothers do not know about the new WHO 2010 PMTCT guidelines."

Many mothers still miss out on ARV treatment particularly the highly recommended Option B+, a life lifelong ART for all pregnant, HIV-positive women, which unfortunately is not yet abundantly available in the country. Until such gaps have been bridged, a lot more work remains.

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