From end of life to chronic care: the provision of community home-based care for HIV and the adaptation to new health care demands in Zambia

Abstract

AimWe present the evolution of primary-level HIV and AIDS services, shifting from end of life to chronic care, and draw attention to the opportunities and threats for the future of Zambia’s nascent chronic care system.BackgroundAlthough African governments struggled to provide primary health care services in the context of a global economic crisis, civil society organisations (CSO) started mobilising settlement residents to respond to another crisis: the HIV and AIDS pandemic. These initiatives actively engaged patients, families and settlement residents to provide home-based care to HIV-infected patients. After 30 years, CHBC programmes continue to be appropriate in the context of changing health care needs in the population.MethodsThe study took place in 2011 and 2012 and was part of a multi-country study. It used a mixed method approach involving semi-structured interviews, focus group discussions, structured interviews, service observations and a questionnaire survey.FindingsOur research revealed long-standing presence of extensive mutual support amongst residents in many settlements, the invocation of cultural values that emphasise social relationships and organisation of people by CSO in care and support programmes. This laid the foundation for a locally conceived model of chronic care capable of addressing the new care demands arising from the country’s changing burden of disease. However, this capacity has come under threat as the reduction in donor funding to community home-based care programmes and donor and government interventions, which have changed the nature of these programmes in the country. Zambia’s health system risks losing valuable capacity for fulfilling its vision ‘to bring health care as close to the family as possible’ if government strategies do not acknowledge the need for transformational approaches to community participation and continuation of the brokering role by CSO in primary health care.