Home Based Care under pressure

What started in Zambia as a stop-gap community measure to provide a service for People Living with AIDS (PWAs), Home Based Care (HBC) initiatives have mushroomed as a result of the shortcomings of the country's health care system, analysts told PlusNews. But lack of resources are threatening the future of the programmes. Zambia is one of the poorest countries in southern Africa with a per capita income below US $300. It has a tottering health service where clinics and hospitals often do not have basic drugs. Staff are poorly motivated, and the health sector is hamstrung by government under spending, even though there are an estimated one million people with HIV/AIDS. Out of a population of 10 million, 70 percent of Zambians fall below the poverty line, living on less than a dollar a day. Basic medical care is too expensive for most. The development of HBC models in Zambia was partly in response to this poverty and the unprecedented health costs of treating and preventing opportunistic infections associated with HIV/AIDS. TB specialist at the University Teaching Hospital (UTH) Dr Joseph Banda told PlusNews that with HBC, the costs incurred by the health services per patient have been reduced to US $0.18 from US $1.70. In terms of cost efficiency, community-based HBC is cheaper to set up and implement than hospital-based outreach programmes. But, Banda said, there are two things to note. The savings in hospital costs represent a transfer of costs to the household level in terms of labour, time and material resources. There are no real savings in that sense. Secondly, the proportion of patients in direct contact with HBC is small, estimated at between 5-20 percent. HBC began unobtrusively, a humanitarian gesture by the churches which also doubled as an outreach tool, providing spiritual and medical support. The UN's World Food Programme donated high energy protein supplements (HEPS) and the clinics gave medicine. "Initially we just concentrated on our parishes and then going out to our immediate vicinity. As the needs grew, so did the pressure on the HBC and now we are overwhelmed, we cannot provide the service we would like to all the people," Sister Aurora who works with an Anglican church HBC explained. The larger NGOs took up HBC as a means to relieve the pressure on hospital beds and provide a more "friendly" environment for severely ill patients. "Initially it was like an extended family affair. We had 10 to 20 people that we visited and took care of. Before we knew it, there were more needy people. The hospital kept referring more patients and now we are in over heads," Georgina Mpundu, a project nurse at an HBC in Lusaka said. Justina Mponga, whose two sons are in various stages of AIDS-related illnesses, has seen first hand the change in the care provided by HBCs. She says initially, someone from the HBC would visit her boys every week with food and medicines. The visits became less frequent and now even when they do visit, they do not always bring medication or food. "I am not complaining, but as a poor person, I relied on these people. I know they are facing problems, but I cannot help but feel a little disappointed that they cannot help me anymore. It was so good in the beginning," she told PlusNews. Aurora accepts that the complaints are justified. "Yes its true we cannot cope. Can you imagine we sometimes visit severely ill patients with nothing more than kind words and prepare them for the worst because we do not have drugs. It is so inadequate." Mpundu believes there has to be some government intervention before HBC become redundant. While the HBC scout for new resources, government should give them access to donated medicines and also support them in applying for grants, funds and other materials for multilateral donors, she said. But the role of HBC is also changing, analysts point out. It is no longer just about providing food and medicine. The carers have to be trained counsellors for pre and post test counselling, dieticians and must be advocates and mobilisers. Aurora agrees. She says everything is happening so fast and evolving so quickly, HBC services have recently had to divert into income generating projects as a means to raise money to keep their programmes going and also to empower families caring for PWAs. The demand for HBC is high nonetheless. There are currently over 50 HBC schemes, some small consisting of just a nurse and three volunteers, others with a group of 20 or 30 volunteers. While they try to provide a service, the coverage is still low, highly localised, urban-based and mostly informal in operation. They are unanimous in complaining over the lack of resources and government support. Reuben Mutonga, who praises the manner in which his carer has looked after him and his sister who also has AIDS, says its time for HBC services to work together and synchronise their work. "My sister and I live in the same house but we have different carers from different HBC. We could have one carer from one organisation." He also thinks HBC should not all provide the same service. "One can concentrate on counselling, others on food and medication and others on income generation. It will be easier for us, the recipients, because when we see a person we know specifically what we can get, rather than overload one person. HBC cannot be everything to everyone." The National HIV/AIDS/STD/Tb Council has formulated a strategic framework which acknowledges the important role that HBC plays and looks to new directions in HBC to decentralise care to community and household level, rather than secondary and tertiary level health institutions. The strategic framework, which if adopted, will become Zambia's first national policy on HIV/AIDS. The framework lists a number of obstacles to the current national response, chief among them is the lack of political will and engagement of politicians as advocates for HIV/AIDS prevention. Elsewhere in Africa, it has been shown to be a powerful stimulus for the mobilisation of resources across society. But under structural obstacles, the report lists the high national debt, heavy reliance on donor funding, and threats to regional stability. The framework states that the main opportunities to strengthen and increase national responses to the epidemic, include forming business coalitions on HIV/AIDS, greater NGO involvement and civic society in fighting HIV and in support of national development in general.