WUNRN
“Definitely we are experts. Why,
because we are the people who live with these patients, we are the people who
know what they want, we are the people that provide all they require.”
-
Approximately 90% of all care for
HIV/AIDS in sub-Saharan
Home-based caregivers have been
at the forefront of the AIDS crisis since its inception, providing care and
support to family members and neighbors. They have developed a tremendous
amount of expertise in caring for people with HIV/AIDS in impoverished and
isolated communities. They provide this care despite extreme shortages of
supplies and compensation, poor sanitation and a lack of safe transportation.
While home-based caregivers
continue to provide most of the care and support for HIV/AIDS, the
majority of programs and policies are designed, implemented and monitored
without their vital experiences and perspectives.
Additionally, 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.
[1] Greenburg, Julia. “Past Due: Remuneration
and Social Protection For Caregivers in the Context of HIV and AIDS.”
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 midst 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. Caregivers now provide psychosocial support, nutrition
assistance, legal services, and promote socio-economic development.