HIV ribbon

Plight of caregivers in HIV fight

Sibhekisipho Fayayo
Home-based caregivers have been at the forefront ofA� alleviating the plight of HIV/Aids patients since the beginning of the fight against the infection, providing care and support to family members as well as neighbours.

Home-based care givers,A� provide their services despite extreme shortages of supplies and compensation, poor sanitation as well as lack of safe transportation.

According to a document written by SAfAIDS executive director, Lois Chingandu and HDN executive director Nadine France titled a�?Rethinking how to engage HIV and AIDS Home Based Caregivers:

a�?Home-based caregivers are the heroes of Zimbabwea��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.a�?

Ginyinhlupho Care Centre found in Nkayi centre is one such institution which provides care to its community.

a�?We provide basic first aid and counseling to clients, as well as training family members on how to provide that care.

a�?We often perform household chores such as fetching water, doing laundry or collecting firewood, all aimed at lightening the burden of disease on the client,a�? said Sithabile Nyathi who is the director of the Centre.

Sithabile Nyathi

Sithabile Nyathi

Ginyinhlupho, like most rural 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.

They do so although their 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 but crucial faces of the response to the HIV/AIDS and TB epidemic.

The Ginyinhlupho Home Based Caregivers have been a vital component of the communitya��s HIV and AIDS management programmes since their establishment in 2004.

The group covers all the eight wards in Nkayi playing an important role in relieving the already overwhelmed public health system in that area.

Their intervention involves counseling HIV-infected people (including the chronically ill), palliative and basic nursing care, referrals to HIV testing, ART literacy and treatment adherence monitoring with the whole aimA� meant to improve access to care, treatment and support for PLHIV (and other chronically ill persons) in the rural communities of Nkayi.

While home-based caregivers continue to provide most of the care and support for HIV/AIDS, most programmes and policies are designed, implemented and monitored without their vital experiences and perspectives.

Zimbabwe plays host to this yeara��s edition of the International Conference on AIDS and STIs in Africa (ICASA) from 29 November to 4 December in Harare yet caregivers such as Ginyinhlupho Care Centre are not aware of the conference.

a�?We have become key players in the fight against AIDS yet our vital experience and perspectives are not captured as we are sidelined when key programmes and policies are designed,a�? said Sithabile Nyathi who is Ginyinhlupho Care Centre director.

She also said it was high time their fellow HIV/AIDS stakeholders recognised their key and complementary role in providing access to health care.

a�?We would appreciate if our fellow comrades in the struggle against HIV/AIDS come with a curriculum which speaks to Home-Based Care (HBC) training, remuneration, HBC kits, access to treatment, HIV prevention education, nutrition and orphan care support, psychosocial support of caregivers as well as incentives for the caregivers,a�? she said.

It is apparent that most global funding dedicated to HIV/AIDS never reaches home-based caregivers and their local communities, but is instead directed to large international NGOs and national governments.

While remuneration and other problems also bedevil caregivers the demand for services also is increasing, adding more pressure on the caregivers.

Greenburg, Julia in the a�?Past Due: Remuneration and Social Protection For Caregivers in the Context of HIV and AIDSa�? UK Consortium on AIDS and International Development. March 2012 concurs that the role of caregivers has shifted.

a�?As the use of Anti-Retroviral Treatment (ART) has increased so has the work of home-based caregivers. Their work has shifted from end of life care to assisting patients to manage a chronic disease, often in the mid of extreme deprivation and isolation. These patients are living longer and require more complex and holistic support to manage their disease in communities where stigma and discrimination remain prominent.A� Caregivers now provide psychosocial support, nutrition assistance, legal services, and promote socio-economic development.a�?

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 one of the leading killers in Zimbabwe, especially among PLHIV.

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

Chingandu and France conclude by saying:

a�?For Zimbabwe to achieve universal access to AIDS care, treatment and support by 2020, more caregivers will have to be recruited. But unless increased funding is directed to 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.a�?