In sub-Saharan Africa, most children with sickle cell disease die before age five because they cannot access the three treatments that keep patients alive into middle age in high-income countries: infection prevention, hydroxyurea, and blood transfusions. The problem is not a lack of medical knowledge—it is a failure of implementation. This research group will work in Nigeria, Ghana, and Zambia to find out why patients cannot get these treatments and test practical, patient-centred solutions. Hospital teams and community groups will run cycles of audit and action to improve access, while geospatial mapping will show where care is available and what it costs to reach it. If the approach works, it will produce a tested programme theory—what solutions work, for whom, and in what context—that governments and health systems across the region can use to close the gap between known effective treatments and the patients who need them.
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Sickle cell disease (SCD) is a genetic disorder affecting 2% of newborns in sub-Saharan Africa (SSA) where >70% of the global disease burden occurs. It is characterised by chronic anaemia, episodes of severe pain, progressive damage to organs (heart, lungs, brain, kidneys) and impaired growth and intellectual development. SCD has been declared a major public health priority by the WHO and UN. Without the clinical management ‘mainstays’ of infection prevention, hydroxyurea and blood transfusions, most SCD patients die before five years of age. In high-income countries most SCD patients can access these mainstays so they live a good quality life past middle age. We will first conduct a situational analysis and then undertake implementation and epidemiology research in Nigeria, Ghana and Zambia designed to overcome barriers preventing SCD patients accessing mainstays of care. Implementation and epidemiological research have been identified by our SSA partners and their governments as priorities in need of strengthening. Implementation research based on empowerment theory (3 PhDs, 1/country): teams in health facilities (6/country – using cycles of standards-based audit, and community-based teams comprising SCD patients/carers, health workers from the facility and community members (1/facility using participatory action cycles) will test out patient-centred solutions to improve access to SCD care mainstays. A realist evaluation will generate a programme theory about what solutions work, for whom, why and in what context. Epidemiology research (post-doc): geospatial mapping of representative facilities providing SCD care mainstays across our three SSA countries will provide information about accessibility, including costs. Impact of our research will be measured through changes in patient outcomes and in patient-centredness of care. Our new collaboration builds on existing relationships and is based on principles of equity, respect and fairness. It brings together a novel multi-disciplinary team of leading African and UK SCD researchers, co-led by two female professors. Our gender-balanced applicants have expertise in clinical SCD care (adult/paediatric), blood transfusion, social science, implementation research, public health, mapping, epidemiology, health communication, policy advice and journalism/public communication. Our UK lead is a global expert in capacity strengthening and our plan for this covers individuals and institutions’ grant management systems. To expand capacity for SCD implementation research in SSA we will recruit a post-doctoral researcher, three African PhD students and four research assistants and support them to ‘learn by doing’. Bespoke professional development opportunities (such as mentoring, courses) based on formal training needs assessments will be provided for all those involved in Group activities including grant management staff in partners’ institutions. An assessment of institutions’ grant management capacity against an established benchmark will identify priority gaps (e.g. lack of policies, career opportunities or research uptake) and inform implementation of institution-specific actions plans. Our dissemination and community engagement plans will use multi-format resources (social media, academic, policy briefs) to reach our target audiences (including SCD patients, their families and communities and policy makers) and provide training in SCD for a cohort of African journalists.
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