Abstract:
The growing HIV burden on families and health systems is exerting a shift toward community caregivers, and is increasing the demand for functional community systems. In Uganda, where the number of people with HIV is increasing against a background of weak health systems, the role of community systems is poorly understood. We investigated the role of community systems in palliative care and the system elements required for an effective community response in Uganda. Qualitative interviews and focus group discussions were conducted among providers and recipients of palliative care, their family members, and governmental and community stakeholders in Mbale and Jinja, Uganda. Results showed that community systems play an important role in many aspects of palliative care—including personal, livelihood, nutritional and bereavement support—and often strengthen care linkages and referrals. For community systems to fulfill these roles effectively, multiple system elements—including leadership, training, partnerships, and enabling policies—are essential. Strengthening community systems could be an effective strategy to alleviate HIV burden on families and health systems. A systems approach could be a potent mechanism for determining which community structures to strengthen in order to maximize the impact of palliative care programs, and for guiding investments in HIV and health.
