Advancing palliative care research in Sub-Saharan Africa: from the Venice declaration, to Nairobi and beyond

By December 2007, an estimated 22.5 million people in Sub-Saharan Africa were living with HIV infection (68% of the global disease burden), with 1.7 million new infections and 1.6 million deaths.1 Moreover, cancer rates in Africa are expected to grow by 400% over the next 50 years.2 The World Health Organisation (WHO) estimates that there are more than 0.5 million cancer deaths in Africa per year3 and that by 2020, 70% of new cancer cases will be in the developing world.4 Despite the overwhelming burden of disease reflected in theseepidemiologicaldata, there remainsadearthofevidence to guide service provision and resource allocation, to prove the effectiveness of local models, and ultimately to improve access to quality palliative care. Palliative care research in Sub-Saharan Africa remains embryonic. This is due in part to the lack of what have also been identified as obstacles to palliative care research in Europe: a critical mass in research groups; dedicated funding; a national strategy for palliative care research and close operational linkages between academics and clinicians.5 In addition, there are particular challenges to the conduct of palliative care research in Africa: the logistics of accessing rural settings with unreliable roads; power and communication deficiencies; too few research personnel; methodological barriers to robust evidence generation6 and the lack of focus on palliative care inHIV research. Furthermore, despite the high numbers ofHIV-related childhood deaths in Africa, the amount of paediatric research appears even less than that of adult palliative care. Indeed, the relative dearth of published African palliative care evidence is symptomatic of a wider African problem, what Volmink and Dare7 described as the ‘moribund’ nature of the continent’s health research, a region where ‘Research capacity – comprising the institutional and regulatory frameworks, infrastructure, investment and sufficiently skilled people to conduct and publish research – varies widely . ’. The argument, sometimes advanced against improving this deficiency, that scarce resources should be allocated to patient care not research is a false dichotomy: the two reciprocally inform each other to mutual benefit. Without such research, the beneficial impact of existing care provision can only be appraised by anecdote rather than rigorous evidence, existing practises are endorsed irrespective of whether or not they achieve improved outcomes, the cost effectiveness of such interventions remains undetermined, proven good practice lessons that could be replicated elsewhere across the continent are never learnt and palliative care models from resource-abundant countries are transferred without adaptation through evaluation to the African context. Some of the key obstacles to the development of palliative care research in Africa include, first, a lack of agreement on outcome measures. The majority of existing palliative care research instruments have not been validated within the African context.8 For example, various tools measure outcomes within palliative care, but the fact that the meaning of such constructs as ‘quality of life’ and a ‘good death’ can be culturally specific renders it critical that such tools are scientifically scrutinised for their validity within different socio-cultural settings. Second, lack of a common language. Most tools have been developed in the English language. In order to have linguistic as well as cultural relevance in African countries with often multiple languages and dialects (e.g., in Uganda there are over 33 local languages), they must be translated, adapted and then re-evaluated for their reliability and validity. Third, limited research funding. Although there is increased donor funding for palliative care delivery on the continent, the funding is primarily concerned with care provision, not research. Moreover, where funding opportunities exist, most palliative care organisations lack personnel with the necessary academic and research qualifications and experience to apply successfully for such money, and the personnel to implement funded research. Without adequate resources and infrastructure, skilled existing and emerging African researchers lack a career path within palliative care, and the required critical mass of academic leaders will not emerge to advance locally led high quality research. Latterly, however, there has beenwider recognition of the need to advance African palliative care research. Importantly, this agenda has not been developed in isolation from mainstream African palliative care experts who recognise that: ‘Clinical andhealth service audit and research is desperately needed so that we can establish how best to deliver