Caregivers

 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.”

-Florence Enyogu, UCOBAC Uganda

Caregiver from GROOTS Kenya helping patient with medication

Home-based Caregivers: Indispensable in HIV/AIDS Care

Approximately 90% of all care for HIV/AIDS in sub-Saharan Africa is provided by family members and home-based caregivers. [1]Home-based caregivers are primarily women that provide care and support for people living with and affected by HIV/AIDS, the elderly, and people living with other chronic diseases. They work in the most marginalized communities that do not have access to the formal health facilities.

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.” UK Consortium on AIDS and International Development. March 2012

What Do Caregivers Do?

  • Connect patients with formal health systems like hospitals and clinics
  • Provide direct palliative and psychosocial care to HIV positive people and their family members.
  • Assist and monitor Anti-Retroviral treatment and adherence.
  • Provide Support for children and other family members of the people living with or deceased from HIV/AIDS;
  • Monitor and evaluate formal health systems and hold governments accountable to communities.
  • Reduce stigma, increase social acceptance and teach prevention. [2]

[2] Compensations for Contributions Initiative, Huairou Commission 2011

The Shifting role of caregivers

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.

 

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