Person-centred sickle cell care: lived experience and participatory research

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Send us a textIn this episode of In Conversation with LSTM, alumnus Dr Motto Nganda is joined by Ayo Akinmolayan, who brings lived experience of sickle cell disease, and Evelyn Matongo, a psychologist leading participatory research in Zambia, to explore what truly person-centred sickle cell care looks like in practice. They discuss the physical, emotional, and social realities of living with sickle cell disease, the importance of mental health and psychosocial support, and how lived experience should shape both research and health systems. The conversation also highlights how participatory approaches are bringing patients, caregivers, communities, and clinicians together to address stigma, improve care, and co-create locally relevant solutions across sub-Saharan Africa and beyond.

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