Hospice Africa Uganda (HAU) and its training arm, the Institute of Hospice and Palliative Care in Africa (IHPCA) realises the need to contribute to the evidence base through high quality research and capacity building. A research unit was established whose main purpose is to facilitate and support all research related activities at HAU and to generate outstanding internationally recognized research. This has been partly realised through patient and family centered research over the past 20 years. We have been involved in a number of studies, both local and international leading to high quality publications.
Given the fact that palliative care is rapidly expanding all over Africa, there is need to create an evidence base which is tailored and is appropriate to the African setting. There is an increasing demand to explore effective education systems which can meet the Palliative care demands in Sub Saharan Africa. This has come at a time when there is a big void in the research infrastructure in many parts of Africa.
We have developed an all-inclusive research agenda to address patient needs and perspectives, staff needs and perspectives, frameworks and models of care, impact of education in palliative care and action/operational research.
Some key study priorities we are now focusing on including search for collaborative partnerships include:
- Oral morphine - attitude of health care providers, impact of nurse prescribers, fears of patients and carers, impact of task shifting on morphine prescription among others
- Financial cost/benefit analysis of palliative care programs and models in the African context
- Description of changing palliative care trajectory of HIV/AIDS patients in the ARV era
- Best methods for increasing access to palliative care
- Quantifying quality of hospice and palliative care
- Pain assessment in non-verbal patients, approaches and tools
- Herbal remedies used in palliative care. Which ones are truly useful?
- Ways to improve access and effectiveness of palliative care Education in resource limited settings.
Over the years, there has been an increasing demand for protection and respect to human participants involved in research. Palliative care research has lagged behind in Africa in part due to lack of accredited Research and Ethics review committees with experience in reviewing and approving protocols in this area of medicine . Through a series of activities HAU established the Hospice Africa Uganda Research and Ethics Committee (HAUREC) which is housed at the main premises in Makindye. HAUREC is responsible for ethical approvals of all research protocols submitted to HAUREC as well as monitoring and evaluation of Palliative care research in Uganda.