By Kabuye Ronald
As the world marks World AIDS Day on December 1st, organizations and individuals under the Uganda Community Caregivers Alliance are calling on the government to establish a comprehensive national caregivers’ policy or act that formally recognizes and supports the essential work of caregivers, especially those involved in HIV/AIDS care.
At a press conference held in Kampala, Nakisozi Mastulah, a caregiver and spokesperson for the alliance, emphasized that caregivers, often women mothers, daughters, or wives—are the unseen pillars behind every person living with HIV. She described caregivers as “unsung heroes” who offer vital physical, emotional, and psychological support to people living with HIV/AIDS, helping them cope with not only the disease but also the stigma and isolation that still accompanies it.
“Behind every person living with HIV is a caregiver,” Nakisozi said. “Caregivers are the ones providing home-based care, ensuring that their loved ones get the love and attention they need while battling a disease that still carries societal stigma.”
The caregivers have expressed optimism that a comprehensive policy or law addressing their challenges will improve their conditions. Among the key issues they face are limited financial support, insufficient training, and a lack of adequate social protection. According to Maxensia Takirambula, another caregiver, the policy should offer social support and protection for caregivers, who face numerous risks to their financial, mental, and physical health, making them vulnerable to poverty, social exclusion, and emotional distress. Takirambula also emphasized the importance of promoting equity in caregiving, ensuring that all caregivers, irrespective of gender, age, socioeconomic status, or location, receive the recognition and resources they need.
A 2024 study by the Huairou Commission on care work and social protection in Africa reveals that 22% of Ugandans are engaged in caregiving, with 88% of caregivers in Africa being women. The study further notes that 54% of caregivers in Africa provide care daily, with 75% of this care dedicated to healthcare, 62% to HIV/AIDS care, and 62% to food provision.
Ritah Kemigisa, a caregiver, called for public investment in caregiving systems and infrastructure, urging the government to recognize the importance of caregiving roles in the community. She also advocated for increased community awareness to ensure caregivers are not working in silence without proper recognition or resources.
The caregivers propose that any future policy or law should include the 5 Rs of Care: Recognize unpaid care work, Reduce unpaid care work, Redistribute unpaid care work, Reward decent care work and Represent care work
These principles are designed to address the deep inequities in caregiving, advocating for fair compensation, recognition, and the redistribution of caregiving responsibilities.
It is also noteworthy that in 2023, the United Nations General Assembly declared October 29th as the International Day of Care and Support, a day to raise awareness and value the work of caregivers. However, despite this international recognition, Uganda still lacks a national law or policy that speaks directly to the rights and needs of caregivers.
As the world commemorates World AIDS Day, caregivers in Uganda are urging the government to take action, not only to recognize their efforts but to ensure they are supported in their vital work improving the lives of both those living with HIV and the dedicated individuals caring for them.
