Rethinking how to engage HIV and AIDS Home Based Caregivers

Mexico City, 6 August 2008, (HDN and SAfAIDS) - Home-based caregivers are the heroes of Zimbabwe's response to the devastating impacts of the HIV epidemic. They see the reality of HIV/AIDS in the community yet they strive to ensure that infected and affected people can live with hope and dignity.

Caregivers provide basic first aid and counseling to clients, as well as training family members on how to provide that care. Often they perform household chores such as fetching water, doing laundry or collecting firewood, all aimed at lightening the burden of disease on the client.

Caregivers have to make do with very few supplies, and are forced to do things that can increase their own vulnerability to HIV/AIDS and TB. They travel long distances, usually on foot, to reach people living with HIV/AIDS (PLHIV) and TB.

Much of the caregiver work remains unpaid, unaccounted for and undervalued in economic terms, despite its critical contribution to society. In many ways, caregivers are the hidden and forgotten faces of the response to the HIV/AIDS and TB epidemic.

As demand for services increases there are also new pressures on caregivers.

The advent of ARV treatment and the resurgence of TB have already introduced new challenges to the role of caregivers in the community. TB has emerged as a leading killer in Zimbabwe, especially among PLHIV. An estimated two thirds of Zimbabweans with TB are also infected with HIV.

Caregivers will require better training so that they can counter obstacles presented by the growing epidemics and new challenges presented by access to treatment.

According to UNICEF, Zimbabwe has nearly 2 million orphaned children, mainly due to AIDS. Many children today are at risk of hunger and malnutrition, psychological stress, abuse, exploitation and HIV infection. Families and communities are near breaking point due to the extent of the orphan problem and are in urgent need of support. The costs of school uniforms, textbooks, supplies and examination fees are also keeping children out of school, further compounding their exclusion within society. Caregivers cannot simply cope with the overwhelming needs of orphaned children, and the situation is made even more difficult in the absence of appropriate medication for children.

Donors and implementers alike expect caregivers to provide care as a part of the community's contribution to mitigating the impacts of HIV/AIDS and TB. Yet many caregivers are poor, have large families or are living with HIV themselves. Within the community, they face the risk of stigmatization due to their association with the disease and/or infected people.

A caregiver working in the community is as valuable as a programme manager who gets paid to craft a funding proposal. Both have a key and equal role to play in responses to HIV/AIDS and TB.

To suggest that caregivers should not be paid because they are not professional and their work is part of the community's contribution is to ignore the sheer individual commitment and sacrifice made by the caregivers. Funding agencies must undergo a paradigm shift in their understanding of the key role played by caregivers.

In short, caregivers need to be supported so that they can sustain their own livelihoods while still undertaking care work. Programme implementers and donors need to recognize this in order to enhance the quality of responses at the community level.

For Zimbabwe to achieve universal access to AIDS care, treatment and support by 2010, more caregivers will have to be recruited. But unless increased funding is directed community level care work and a new model of working with caregivers is employed, few will be willing to volunteer for this vital but demanding role.

Nadine France

HDN Executive Director

Lois Chingandu

SAfAIDS Executive Director

To understand more about the development of HBC in Zimbabwe and its future potential, Irish Aid engaged Health & Development Networks (HDN) and the Southern Africa HIV and AIDS Information Dissemination Service (SAfAIDS) to assess and document lessons from HBC interventions. Key recommendations are contained in a book titled "Caring from Within: Key findings and policy recommendations on home based care in Zimbabwe" to contribute to better understanding and evidence-based decision-making in the implementation of HBC interventions in Zimbabwe and beyond.

About Health & Development Networks

Website: www.hdnet.org

Health & Development Networks (HDN) is a leading facilitator of information, dialogue and advocacy approaches on HIV and TB. Underpinning all of HDN's work is the mantra ‘Speak Your World', which focuses on increasing the voices of those least able to speak out, including those of marginalized/isolated groups, communities and individuals affected by HIV and TB. Headquartered in Chiang Mai, Thailand, HDN works with and supports broader civil society to effectively respond to the epidemic.

About Southern Africa HIV and AIDS Information Dissemination Service

Website: http://www.safaids.net

Southern Africa HIV and AIDS Information Dissemination Services (SAfAIDS) is the leading southern Africa regional HIV/AIDS centre of excellence, organizing, analyzing, repackaging and disseminating HIV and AIDS in response to the information needs of communities. Based in Harare, Zimbabwe, SAfAIDS' core activities include providing accurate and cutting edge HIV and AIDS information through a variety of innovative channels to reduce people's vulnerability and risk to HIV and TB.