May 2007, Vol. 13, No. 1

HIV and AIDS
Examining the Rollout of Pediatric Antiretroviral Treatment
in South Africa

“We are grossly undersupplying antiretroviral drugs to children, and our prevention of mother- to-child transmission program is not working at this site. As a result children are dying in hoards,” explained one doctor who was interviewed as part of a study of pediatric HIV treatment in South Africa. While not all the findings were as grim as the one just quoted, the studies revealed significant deficiencies in pediatric HIV treatment in South Africa. Researchers communicated their findings and their informed recommendations to healthcare workers, program managers, health ministers, and other policymakers.

The USAID-funded study, which looked at pediatric antiretroviral (ARV) programs at 16 institutions in five of South Africa’s nine provinces (Eastern Cape, Free State, Gauteng, KwaZulu-Natal, and Western Cape), was the result of a collaboration between the Population Council and the University of Cape Town. A similar study, which looked at 15 institutions in the province of Limpopo and was funded by Irish Aid, resulted from a collaboration with the University of Venda. In addition to doctors, nurses, and pharmacists, the second study also looked at the role of traditional healers in pediatric HIV care. The study sites were selected to reflect variation in clinic characteristics and location within the health system (for example, the researchers investigated pediatric clinics at highly specialized institutions in urban settings as well as combined adult and pediatric general care clinics in rural areas).

HIV infection in children
In 2005, more than half a million children died of AIDS, the vast majority of whom lived in the developing world. In sub-Saharan Africa, AIDS is one of the leading causes of death among children younger than five. In South Africa, 40 percent of deaths of children younger than five are attributable to HIV. Children are known to have a higher vulnerability to opportunistic infections and a faster rate of disease progression than adults. Prompt initiation of ARVs is known to increase child survival and reduce deaths.

In 2003, the South African cabinet approved a plan for a national HIV program, whose goal was to have at least one general HIV service delivery point in each district providing treatment by the end of March 2004. The aim of these two Population Council studies was to gauge the success of the pediatric element of the HIV programs and to determine knowledge gaps that can be addressed by operations research. (Operations research focuses on the day-to-day activities, or operations, of programs. The findings of operations research can be used to formulate specific recommendations for changes that program administrators can make to improve their operations, and thus the health of their patients.)

These studies included three activities: a consultative workshop with doctors, nurses, program administrators, and health ministers; a review of published HIV policies; and an evaluation of pediatric ARV programs. The study results have direct policy relevance for South Africa and other countries in the region that are seeking to expand HIV treatment programs for children. The findings will be useful for the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) in meeting its goal of providing antiretroviral treatment to 2 million people living with HIV. Additionally, they address two Millennium Development Goals, those of reducing child mortality and combating HIV and AIDS

Policy review
The main South African government document providing guidance to doctors and program managers on the rollout of HIV treatment for adults and children is the “Operational plan for comprehensive HIV and AIDS care, management and treatment for South Africa.” The researchers reviewed this as well as other key documents. The review showed that while current policy documents cover a wide range of services and interventions for HIV-infected children, the information is scattered over several documents. Documents are not uniform in their presentation of information and often give only limited information on certain issues. For example, there are no specific recommendations for managing the care of infants living with HIV, treating HIV-positive adolescents and youth, or caring for children who lack reliable caregivers. Thus, “these guidelines do not facilitate efficiently the development of comprehensive services for HIV-infected children,” said Naomi Rutenberg, a study investigator from the Population Council, and director of the Council’s program on HIV and AIDS.

Key results of situation analysis
Through interviews with healthcare workers, the researchers found that there was no standardized or coordinated training program for South African medical personnel on the management of pediatric HIV and AIDS. Most practitioners said they either were self-taught or studied under a more experienced mentor. Many of the nurses reported they were uncomfortable dealing with younger children, in part because they are harder to draw blood from and because determining the dosage of their liquid medication can be more difficult. One primary care nurse said, “I can do the children if they are above eight years…below that age, they are on syrups…syrups can be more complicated and they need a more professional person to do it.”

Pharmacists dispense ARVs, maintain stock levels of drugs, and monitor adherence to the regimen by counting remaining pills and measuring syrup. Monitoring adherence can be time consuming, and the researchers said that the burden of this duty could be reduced through the use of unannounced in-home pill counting and by a method known as modified directly observed therapy. Under this strategy, originally developed and used successfully for tuberculosis patients, health workers or community volunteers watch clients take their medication, thus making adherence to the regimen more likely.

The research teams found that pharmacists also play a key role in counseling patients and other unusual duties. One pharmacist, from a specialized care facility in an urban area, stated that in addition to his regular responsibilities, he is “part of trying to get the support group running and trying to start income generation for patients.”

How do patients access services?
The researchers found that one of the biggest stumbling blocks to fully implemented ARV care is a lack of strong links between services for the treatment of pediatric HIV and other services that would seem to be natural complements. Very few pediatric patients were referred from programs for the prevention of mother-to-child transmission of HIV (PMTCT) or from programs for HIV voluntary counseling and testing (VCT).

Most children were referred from community clinics and had been either chronically ill or hospitalized, suggesting that HIV infection had progressed to a point at which it severely compromised the child’s immune system. Only 5 percent had been tested through a PMTCT program. Caregivers—usually mothers, grandmothers, and aunts—indicated that fear of stigmatization and prejudice made them delay seeking HIV- and AIDS-related healthcare for their children. Stronger relationships between PMTCT programs and pediatric HIV programs, as well as improved blood-taking skills at primary-level facilities, are essential for early identification of children who need treatment, according to the researchers.

Doctors and nurses mentioned a number of other tough obstacles to full rollout of the pediatric ARV program, including clinic space constraints, problems maintaining adequate stocks of ARVs, and fewer drug options for children. Also of concern were the lack of services for adolescents; widespread poverty and unemployment, which impedes access to services; and a lack of community awareness about the availability of ARV services and the benefits of ARV treatment.

In Limpopo, researchers interviewed traditional healers, from whom many South Africans seek their healthcare at one time or another. The traditional healers said that they had heard of HIV and AIDS on the radio but that they do not use ARVs, relying instead on traditional medicines. As one healer put it, “my ancestors do not know it and they do not use it in their communication with me. So I treat what they tell me to treat.” Ultimately, however, the researchers were left with the impression that traditional healers see few pediatric HIV patients and that children are usually taken to regular healthcare facilities.

Conclusions and recommendations
The research teams found that ARV programs that are treating children successfully vary according to local circumstances. However, there were a few clear components of success: child-oriented human resources, such as nurses with technical proficiency in drawing blood from young children, and the availability of adequate stocks of ARVs.

“We found that the human factor is one of the most critical components of a successful pediatric site. Dedicated doctors demonstrate how individuals are capable of making a difference, for example by partnering effectively with other healthcare workers and organizations,” said Lewis Ndhlovu, a Population Council public health researcher.

The research teams generated several specific recommendations for improving pediatric HIV care in South Africa, including:

• ensure that children are placed on the ARV rollout agenda by making sure that community- based programs have the expertise and capacity to monitor children’s T-cell counts, and offer appropriate drugs, nutritional support, anti-TB treatment, routine immunizations, and appropriate referrals;

• standardize treatment protocols and referral guidelines;

• encourage early identification and referral of HIV-infected children from PMTCT programs;

• provide additional, standardized training for health professionals, including upgrading nurses’ skills;

• improve drug procurement and supply channels;

• address the special needs of infants and adolescents with HIV; and

• improve community awareness and reduce stigma.

“The need for greater family and community involvement in pediatric ARV provision cannot be overemphasized,” stated Ndhlovu. “The widespread fear of stigmatization tends to delay treatment and can have far-reaching negative effects on the health of mothers and children.”

Sources
Maluleke, Thelmah, Lewis Ndhlovu, Jude Igumbor, and Naomi Rutenberg. 2006. “Current practices in paediatric ARV rollout and integration with early childhood programmes in the Limpopo Province, South Africa,” Final Report. Limpopo, South Africa: University of Venda.

Michaels, Desireé, Brian Eley, Lewis Ndhlovu, and Naomi Rutenberg. 2006. “Exploring current practices in pediatric ARV rollout and integration with early childhood programs in South Africa: A rapid situational analysis,” Horizons Final Report. Washington, DC: Population Council. (PDF) (PDF of research summary)

Outside funding
Irish Aid and the President’s Emergency Plan for AIDS Relief through the United States Agency for International Development

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See Also

• HIV and AIDS/Treatment, Care, and Support

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