Horizons Report | June 2006 | Where Are the Children?

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June 2006

Where Are the Children?
Strengthening pediatric access to ART in South Africa

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In a country where 40 percent of deaths in children under age five are attributed to HIV, expanding pediatric access to treatment is critical.

Photo credit: Nathan Golon

A grandmother stands in line outside of a pharmacy, firmly grasping a little girl’s hand. In her other hand is a yellow card, a prescription for the child that the doctor at the clinic gave her with detailed instructions. It’s a struggle to remember all the numbers he mentioned, and she hopes the pharmacist will take a few moments to go over the new dosing for the drugs and give her some tips on how to measure them correctly. Because these medicines—the ones that they call antiretrovirals (ARVs)—have become her entire hope for the future.

Just weeks ago her granddaughter was in the wards of a South African hospital, barely clinging to life. It was then that the doctors first told her that the seriously ill three-year-old was HIV-positive. But now, with the help of the clinic staff and the lifesaving drugs, her granddaughter has a chance at survival. She is one of the lucky ones.

The unfortunate reality is that while many adults have benefited from treatment initiatives in sub-Saharan Africa, children have been largely ignored or excluded. AIDS sadly remains one of the leading causes of death among children under the age of five years in the region.

While efforts to get more children on treatment are increasing, important information is lacking to guide program and policy implementation. For example, there has been little documentation of experiences in the identification, treatment, and management of young children who are HIV-positive, and scarce information about how communities, caregivers, and health providers can work together to improve access to treatment for these children.

To address these gaps, the Horizons Program and the University of Cape Town conducted a rapid situational analysis in 2005 of pediatric HIV treatment sites in South Africa. In 2003, the South African government approved a plan for a national HIV treatment program with the goal of at least one service delivery point in each district providing ARVs. The guidelines emphasized providing treatment for both adults and children, and based on reports from a number of managers of sites who were the first to provide pediatric HIV care, the initial effort did result in a significant number of children on treatment. This was especially important in a country where AIDS is the cause of an estimated 40 percent of deaths in children under five years of age (Dorrington et al. 2004). The rapid situational analysis details what is happening on the ground—challenges and lessons learned at key pediatric HIV care sites in South Africa—in order to understand how children have been affected by the ARV rollout and what can be done to reach many others who still need treatment.

Study Methods

The researchers employed qualitative and quantitative methods to collect data at ARV program sites. They conducted facility observations and interviewed facility managers, health workers (doctors, nurses, pharmacists, social workers, counselors, and dieticians), and caregivers of children on ARVs. At a total of 16 sites offering pediatric ARV services, 7 facility managers, 67 health providers, and 126 caregivers were interviewed.

The 16 sites varied in their overall character and location within the health system, including, for example, a pediatric clinic at a tertiary institution in an urban setting and a combined adult and pediatric clinic at a primary level rural facility. As of 31 March 2005 the sites were providing ART to approximately 1,300 children. About 60 percent of these children were under six years of age.

An Environment of Constraints

All facility managers and health care workers who were interviewed about their experiences and perceptions of the ARV rollout spoke of the challenges they faced in their effort to expand access to treatment for HIV-infected children. Across all facilities, respondents repeatedly cited a lack of staff as a major obstacle to reaching more children with the treatment they need.

Health care workers viewed a lack of specific pediatric training as a serious setback. Most doctors reported having received limited or no formal training in the area of pediatric HIV management, even during any ARV rollout training they received. Instead, they generally relied on self-study, such as on-line courses and reading, and mentorship from specialists to build their skills in the area. Nurses also had varying levels of HIV-specific experience and limited pediatric training, with the majority receiving on-the-job training in these areas from doctors.

This lack of training in managing ARVs for children has resulted in low levels of confidence in treating children among many service providers. As one doctor in an urban tertiary care site explained:

A lot of doctors are not willing to work with children and are scared of the rollout, they think that with children it’s more difficult…. I know for instance our sisters [nurses] don’t see children and some of the doctors don’t see children.

Nurses across study sites were often reluctant to draw blood from children under the age of six, a major barrier to the rollout of ARV treatment for children and infants. A fieldworker’s observation at a district hospital site underscored this issue:

Currently nurses are refusing to take blood on all children less than six years which impacts negatively on the screening process for ARV readiness. The children now have to be screened by the doctors in the ARV clinic, sent back to the fully booked drug readiness program, and then back to the ARV clinic for their ARV treatment to be initiated.

In addition, some nurses found managing ARVs for very young children challenging because the dosing calculations are complicated and change frequently as children grow.

At the same time, working with older children involves other challenges. As Desireé Michaels of the University of Cape Town, principal investigator of the study, explained, “Health workers need specific skills and strategies to cope with the growing number of young chronic care patients. Our primary health care system is not currently set up for the long-term care of adolescents.”

Finding and Treating Children

Health workers were interviewed about the referral of children to their care and the identification of HIV-infected children in need of treatment. The majority of children on treatment were referred by primary care facilities or by hospital in-patient wards when they presented with clinical symptoms. As a result, a large number of these children were ill when they began treatment. Results from the caregivers survey supported these findings—most of the children had been tested for HIV because they were chronically ill or hospitalized. Only a few patients were brought in for testing and care by their parents who were receiving treatment.

Health workers agreed that prevention of mother-to-child HIV transmission (PMTCT) programs, primary care clinics, and VCT services were ideally the optimal sources of treatment referral for the majority of HIV-infected children. They noted that there is often a breakdown in the follow-up of an HIV-exposed infant from when the mother delivers until services are rendered at another health facility, such as routine immunizations at a primary care clinic. One doctor at a peri-urban tertiary level care facility shared his frustration over the system:

We know there are children from the PMTCT program who should have been on ARVs so we are grossly undersupplying ARVs to children and our PMTCT program is not working at this site [to identify these children] and as a result children are dying….

In addition, doctors at tertiary institutions stressed that primary level clinics should be the place where children are identified, assessed, and treated and that their only contact with tertiary institutions should be for complications and hospitalization. As a doctor at an urban tertiary care facility noted:

...I think [our] role in the program is to support, mentor, and develop capacity of…primary sites when it comes to the management of children requiring ARVs. [Our] specific clinic function will be the management of more complicated cases, where patients are ill, or for the very young children under six months but certainly [tertiary institutions] are not appropriate for the management of children who are well and stable on ARVs….

However, assessing and initiating treatment of children requires specific skills such as blood taking from infants. Beyond that there is the need for CD4 counts and viral load tests, which require laboratory services. While recognizing that primary care is most accessible to the community, health providers also recognized the current lack of capacity at that level to fulfill the range of services required to successfully identify and provide ARVs to children.

Involving the Community

Providing treatment to children is additionally complicated because of the need to involve caregivers in the entire process—from diagnosis, referral, and initiation of treatment to regular follow-up care and
Primary level clinics should be the place where children are identified, assessed, and treated.
consistent administration of the drugs. During interviews health workers mentioned a number of socioeconomic barriers that their patients face that negatively impact access and adherence to treatment by children. For example, the majority of children in the country are managed at secondary and tertiary health care centers or at dedicated HIV treatment facilities, which are not necessarily located near where they live. The cost of transport can become a barrier to clinic visits.

The circumstances surrounding a child’s living arrangements can be an obstacle. Social workers reported that a large bulk of their work entailed ensuring that caregivers can access government grants, such as child support, care dependency, and foster child grants. But access to government grants by caregivers for themselves or on behalf of children is hampered by a lack of identity documents and birth certificates or because many children do not have legal guardians. The ill health and/or death of parents can impact negatively on a child’s likelihood of receiving treatment and/or continuing to receive their medication. Multiple caregivers and instability of residence can add to the challenge of continuing many children on treatment.

Community awareness also remains a pervasive challenge to a successful pediatric ARV rollout. In some sites it was reported that community members were not aware that ARV services were available or recommended for children. In fact, some doctors shared the perception that there is widespread skepticism surrounding treatment of children and concerns over negative effects of the drugs on them.

Interestingly, when asked what they saw as the main ways to increase treatment access for children, most nurses interviewed did not mention mechanisms within the health system but rather community interventions such as public awareness campaigns and patient, caregiver, and teacher education regarding the availability and benefits of treatment for children. More than one respondent emphasized the need for information to give patients about ARVs and how they can benefit children in particular. As a nurse in a peri-urban tertiary level facility noted:

I’m sure the ARV rollout started before community mobilization, especially in rural areas, because they don’t know about ARVs, even if it’s for the adult. Also the fact that these children, most of these children you’ll find that it’s not their mothers who look after them, it’s the grannies, it’s the people who have no knowledge of HIV and AIDS…who didn’t even know that the child is HIV-positive….

Recommendations

Despite having made progress in meeting the treatment needs of HIV-infected children, the dedicated professionals surveyed identified many concerns and challenges that need to be overcome to meet the treatment goals of the nation. This will require action from key individuals at institutions, and in provincial and national HIV directorates—actions that are relevant for the Government of South Africa as well as for other countries in the region that are seeking to expand treatment access and service delivery for children.

First, standardized training for doctors and nurses from institutions at all health care levels must be implemented to give them the expertise and clinical competence to manage young children.

Second, links between PMTCT programs and other childhood and development services must be strengthened so that HIV-exposed children do not get lost in the system. Preventing pediatric HIV infection through a comprehensive PMTCT program remains the most effective strategy to modify the course of the pediatric HIV epidemic in South Africa. However, there still will be children who are exposed to HIV and subsequently are in need of care and treatment. Identifying and monitoring these HIV-exposed children from birth will ensure early intervention and maximize benefits to the children’s health while minimizing the burden to the health system.

Third, national pediatric adherence guidelines need to be developed that emphasize treatment literacy training targeted to caregivers of pediatric patients as well as the provision of medication administration tools, such as color-coded bottles and dosing syringes. These will help ensure the high levels of adherence critical for achieving the goal of ART—survival and improved quality of life. In addition, family-centered models of care should be considered to encourage adherence and the integration of services.

Fourth, routine statistics that disaggregate children by age and sex should be collected from all sites in South Africa to flag areas that are either not treating children or adolescents or are falling below acceptable enrollment rates. These areas could then be targeted for appropriate support.

Finally, the Department of Health should take the lead in bringing together other key players to foster a collaborative effort to provide social support and develop interventions for children without regular or reliable caregivers, and to promote community awareness of treatment through information dissemination campaigns.

Results from the rapid situational analysis are currently being disseminated to the study sites to guide them in strengthening their services. They are also being shared with advocacy groups and government policymakers to inform their ongoing ARV rollout planning processes. Horizons is planning a follow-on study that will examine family-centered models of service delivery and the identification of orphans and vulnerable children in the community in need of care.

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See Also

For additional information please contact:
Horizons
Population Council
4301 Connecticut Ave. NW, Suite 280
Washington, DC 20008
Telephone: +1 202 237 9400
Facsimile: +1 202 237 8410
E-mail: horizons@popcouncil.org

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This page updated
21 July 2006