Help guide policy on HIV/AIDS and children

The Department of Health has commissioned the Children's Institute at UCT to conduct research and develop guidelines for improving health, social development, and educational services to children made vulnerable by HIV/AIDS. The guidelines are aimed particularly at services for children orphaned by HIV/AIDS or at risk of becoming orphans.

After a thorough consultation and research process, the guidelines will be completed by the end of 2002 and handed over to the Department of Health. Recommendations for implementation will accompany the final policy guidelines to guide the relevant departments and service providers who will be responsible for implementing the policy.

The HIV/AIDS pandemic is rendering an unprecedented number of children extremely vulnerable. Arguably the most vulnerable of these children are those who are either in the care of terminally ill parents, or who have lost their parents to AIDS- related illnesses. Many of these children are also HIV-positive and most live in conditions of dire poverty. The task team responsible for the research and drafting process, along with many others working in the children's sector, have identified the need for implementable policy guidelines to ensure that these children are able to access services to provide for their physical and social needs.

Currently, the support and services available both from government and civil society do not provide an adequate safety net to ensure that the children's physical and social needs are adequately provided for. Existing health, social development and educational services are not structured to accommodate hundreds of thousands of children who do not have adult primary caregivers. Health policies, for example, do not take into account the fact that a child may need to access a primary health care service alone, so the service needs to be practically prepared for this in a range of ways, from attitude of staff to provision of transport.

The issues raised by the 90 HIV-affected children who attended the National Children?’s Forum on HIV/AIDS (August 2001)1 have informed the conceptualisation and design of the research project and the development of interview schedules. The National Policy Guidelines aim to address many of the concerns raised by the children. Two such issues relate to access to schooling and to health care.

Children are being denied admission or expelled from school because they are unable to pay school fees. Because so many of the issues raised by children affected by HIV/AIDS relate to access to education and treatment at schools, the original research design was extended beyond health and social development services to include education. The researchers will conduct interviews and focus group discussions with children, caregivers, teachers, principals and representatives from district, provincial and national departments of education to shed light on the extent of the problem, as well as to clarify roles and responsibilities in addressing the issue.

One of the main barriers to accessing services appears to be transport. Transport was identified by children as a barrier to accessing health services in particular. Lack of adequate services and medication at clinics means that children and their caregivers have to travel long distances to get to the next level of health care services where medication and the services of a doctor are more likely to be available. Roads in many rural parts of the country are very poor and public transport is therefore infrequent and expensive. The research will look at practical ways of overcoming these problems.

Besides the above two problems, children made vulnerable by HIV/AIDS face many other problems when trying to access services. The research process will identify these problems and investigate their extent, causes, and solutions.

The task team is conscious of the need to ensure that the guidelines are implementable and that they make a real difference to the lives of the targeted children. Their intention is for the guidelines to ultimately provide very practical and sustainable recommendations for improvements to service delivery.

Implementation of the guidelines will require inter-departmental and inter-sectoral collaboration. In order to ensure that this happens, the relevant departments and service providers from these departments will be involved in the process right from the start. The guidelines will clearly indicate which departments are responsible for which tasks and give practical recommendations on how service providers from different departments can work together.

The research to inform the guidelines started in October. The task team is currently collecting relevant South African research. Primary data to inform the research and the guidelines will be collected from six sites in five provinces, through interviews, focus group discussions, self-administered questionnaires and activities. Research participants include children, their primary caregivers, health, social and education service providers and key community informants.

Once the data collection phase is complete, the research team will be drafting a discussion paper that will be distributed for comment in mid-2002. A national workshop will then be held with key role players. Recommendations, informed by the workshop, will be formulated and the policy guidelines will be finalised by the end of 2002.

In order to ensure that the guidelines provide realistic, practical and implementable solutions to the many barriers that children affected by HIV face, the research process needs to be consultative and inclusive. The process of drafting the guidelines will therefore draw on the expertise of a range of stakeholders, including service providers, government departments, researchers, civil society organisations and local and comparative policies and programmes. The research team has also undertaken to ensure that the process is open and participatory. If you would like to contribute written information, experience, advice or research that could inform the drafting of the guidelines, please contact Helen Meintjies on fax: 021 689-5403 or [email protected]. If you would like to be sent a copy of the discussion paper in mid-2002 in order to provide comment to the drafters, please contact Sonja on tel: 021 689-5404 or [email protected]

Footnotes: 1. See ChildrenFIRST Vol. 5, No.39. Oct/ Nov 2001