ABSTRACT
The enormous burden of progressive, incurable disease in sub-Saharan Africa is reflected in the epidemiology of cancer and HIV. However, there has been little research activity and evidence generated to inform appropriate and effective responses. A collaborative of clinicians, academics and advocates have been active in the design, delivery and reporting of research activities in African palliative care. Here, they report the methodological, ethical, logistic and capacity-based challenges of conducting research in the sub-Saharan context from their experience. A number of strategies and responses are presented.
Subject(s)
Biomedical Research/statistics & numerical data , Databases, Factual , Epidemiologic Research Design , Evidence-Based Medicine/statistics & numerical data , Palliative Care/statistics & numerical data , Africa/epidemiology , HumansABSTRACT
OBJECTIVE: To identify the palliative care needs of terminally ill people in Uganda. DESIGN: Descriptive cross sectional study. SETTING: Home care programmes in and around Kampala that look after terminally ill people in their homes. PARTICIPANTS: 173 terminally ill patients registered with the home care programmes. RESULTS: Most of the participants had either HIV/AIDS or cancer or both; 145 were aged under 50 years, and 107 were women. Three main needs were identified: the control or relief of pain and other symptoms; counselling; and financial assistance for basic needs such as food, shelter, and school fees for their children. The preferred site of care was the home, though all these people lived in urban areas with access to healthcare services within 5 km of their homes. CONCLUSION: A "good death" in a developing country occurs when the dying person is being cared for at home, is free from pain or other distressing symptoms, feels no stigma, is at peace, and has their basic needs met without feeling dependent on others.