Communities and families neglected in HIV programmes

In Zimbabwe, many orphans living with HIV are cared for by extended families, particularly grandparents, yet very little of HIV programme funding goes direct to these carers.

In Zimbabwe, many orphans living with HIV are cared for by extended families, particularly grandparents, yet very little of HIV programme funding goes direct to these carers.

Some young orphans survive on weekly rations of infant formula being distributed within communities by various non-governmental organisations. However not every infant is getting the formula as supply is erratic mainly due to lack of funding.

According to Avert, in sub-Saharan Africa around 15.1 million children have been orphaned as a result of AIDS. The impact of HIV and AIDS in Zimbabwe has been particularly tragic, with 74 per cent of all orphaned children, being orphaned as a result of AIDS.

Community response to AIDS orphans

Veronica Kwati, director of the Tamuka Foundation, who provide food and support groups in the community of Kuwadzana, a town situated 20km out of the main city centre, said this work is being done at the grassroots by women across Africa, who are leading holistic responses to HIV and AIDS in their communities.

This includes combating stigma and discrimination and bringing community awareness that for people with HIV, living with the disease on a daily basis is not simply a health issue.

Kwati said coping with HIV encompasses all aspects of daily life, such as access to basic services including water, sanitation and transportation, livelihoods, food and security, inheritance rights and governance.

“Our dream is to have a centre – a multidisciplinary centre not just for people living with HIV and orphans, but also for their caregivers – a day centre where people would be cared for, educated, counseled and comforted,” said Kwati.

“Although there has recently been more focus on how HIV and AIDS affect young people, the issue of children affected by AIDS is still relatively neglected and where very young are concerned, their invisibility is striking.

“The notion that children have rights is no longer a contentious issue in Africa, but birth registration systems are underdeveloped and many laws to protect children from discrimination or violence remain unimplemented,” said Kwati.

Funding must support community action

According to Panos London: “More than 90 per cent of all children are cared for in communities and extended families, the latter increasingly headed by grandparents; spending by households is the largest single component of overall HIV and AIDS expenditure – and greater than official HIV funding.”

Yet HIV funding rarely goes to communities and, as Panos points out, it is often absorbed by intermediary organisations. Kwati highlights that there is real concern that some external interventions can undermine local responses and actually make things worse. Development action must be built on the initiative of local communities and channel resources to them without undermining their existing coping mechanisms.

“Institutional care for children is considered a poor second – it is better to care for them in an extended family setting, but it is increasingly common as more children are orphaned and families fail to cope with additional expense and burden of care,” says Kwati. “It is vital that any institutional care that is provided is of the highest quality.

“Community mobilisation needs to be systematic to engage local leaders, support open discussion of HIV and AIDS, consolidate cooperative support activities and ensure that those children without family support receive care and protection.

“There is need for continuous, locally appropriate, steady supply of resources so that communities can sustain their response and improve the wellbeing of their children,” said Kwati.

Read Amina’s story: finding hope when pregnant and living with HIV