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Job Description and Person Specification: Community Facilitator: Patient-centred sickle cell disease management in Africa (PACTS) Background and aims of study In Sub-Saharan Africa, around 1/50 babies have sickle cell disease (SCD) and 50–90% die before the age of 5 years. SCD is a genetic abnormality of red blood cells and a major public health priority. It causes anaemia, sudden severe pain, and eventually damages organs (lungs, brain, kidneys). In high-income countries, most SCD patients survive well into middle age because they are diagnosed early and given treatments to prevent infections, anaemia and organ damage. Though these treatments are available in most countries in Africa, they are not taken up by most patients and are not systematically provided by clinicians. SCD patients, their carers and health workers will be our co-researchers, exploring why SCD patients do not get these treatments and testing out solutions to increase uptake of care, to drive evidence-based clinical practice, and to increase patient-centredness of SCD care. We will select six different types of health facilities (clinics/hospitals) that provide SCD care. For each facility we will create two research teams. One will be from a community within the catchment area of the health facility, comprised of SCD patients, carers, and other community members. The second will be comprised of health workers providing SCD care from the facility. The community-based team will be capacitated to use community-led participatory action cycles (e.g. a problem-solving approach where local issues related to SCD knowledge and...
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