"I Did What I Could Manage": Caregiver Burden and Rational Triage of Stroke Discharge Instructions in Rural Uganda - A Qualitative Study.

BACKGROUND

In rural Uganda, informal caregivers provide most post-discharge stroke care, often without formal training, written guidance, or community rehabilitation support. This study explored caregiver burden and factors shaping implementation of stroke discharge instructions in rural southwestern Uganda.

METHODS

We conducted a qualitative study at Mbarara and Kabale Regional Referral Hospitals. Eleven informal caregivers of stroke survivors participated in semi-structured in-depth interviews. Interviews were audio-recorded, transcribed, translated into English, and analysed in Atlas.ti 9 using thematic analysis with a deductive codebook refined inductively during analysis.

RESULTS

Four themes were identified: multidimensional caregiving burden; variable discharge instruction content and delivery; barriers to implementing instructions; and facilitators that sustained care. Burden was physical, financial, psychological, and social, often concentrated on one family member. Discharge instructions commonly focused on exercises, medications, diet, and follow-up, but were frequently verbal and lacked clear medication resupply or review plans. A central finding was caregivers' rational "triage logic": when resources were insufficient, they prioritized zero-cost instructions such as exercises and delayed or abandoned costly instructions such as medicines, transport, and follow-up visits. Facilitators included love and duty, family support, retained discharge knowledge, resource mobilisation, and occasional home-based health worker visits.

CONCLUSION

Caregivers of stroke survivors in rural southwestern Uganda experience substantial multidimensional burden and implement discharge instructions within severe structural constraints. Written discharge protocols, caregiver screening, clearer follow-up pathways, and task-shared community rehabilitation may improve post-stroke continuity of care in similar low-resource settings.