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Paper short abstract

Across psychosis care in Uganda and sickle cell care in Liberia, this paper traces how chronic care is reshaped by uncertainty and structural abandonment, and explores how families and communities craft forms of ethical, improvisational and relational care when treatment cannot be sustained.

Paper long abstract

Drawing on long-term ethnographic engagement with South Sudanese refugees living with psychosis in Palabek refugee settlement, northern Uganda (2019–2020), and additional fieldwork with people living with sickle cell disease in Liberia (2025), this paper examines how chronic care becomes improvisational, relational, and ethically reparative when treatment itself is structurally difficult to sustain.

I take medications - and particularly their effects and the sociopolitical structure that govern their efficacy and availability - as the start of my analysis: antipsychotics within a humanitarian emergency in Palabek, and hydroxyurea in Liberia. In both settings, treatment is rendered unsustainable, but through different mechanisms. In Palabek, medication produces hunger, weakness, and exhaustion amid profound food insecurity, while mobility becomes necessary for survival: refugees are often forced to return to South Sudan to work, exposing themselves to insecurity and the risks of interrupted care. In Liberia, hydroxyurea is often unaffordable and intermittently available, making therapeutic continuity dependent on strained diaspora networks and everyday clinical ethics in Liberia, including professionals who donate their own blood during acute pain crises.

Across these cases, I explore how care is relationally performed when chronic conditions are lived through recurring interruptions and uncertainty, and the dilemmas of health, morality, and personhood emerging when treatment cannot be reliably maintained. I show how families and communities craft relational forms of care that exceed biomedical adherence and foreground active participation in forms of suffering, and propose to understand this ethical labour as an effort to remain 'moral persons' in the face of structural abandonment.