Physical, psychosocial and economic burden among caregivers of children with sickle cell disease at masaka regional referral hospital, Uganda

The burden of caring for children with sickle cell disease extends beyond clinical demands to include physical, psychosocial, and economic challenges. This study explored the physical, psychosocial, and economic burden experienced by caregivers of children with sickle cell disease at Masaka Regional Referral Hospital, Uganda. A phenomenological qualitative study design was employed to capture caregivers lived experiences of caregiving. The study involved caregivers of children diagnosed with sickle cell disease who were attending paediatric services at the hospital. The respondents were selected using purposive sampling until data saturation was achieved with 22 respondents. Data were collected using in-depth, semi-structured interview guides. Data were analyzed using thematic analysis following an inductive approach. Findings revealed pronounced physical burden characterized by sleep deprivation, fatigue, and continuous caregiving demands. Psychosocial burden emerged through stigma, discrimination, marital strain, social isolation, and emotional distress, often linked to community misconceptions about sickle cell disease. Economic burden was reflected in lost income, high transport costs, expensive investigations, frequent hospital visits, and medication stock-outs, which strained already limited household resources. In conclusion, the caregivers experienced a physical, psychosocial, and economic burden exacerbated by weak health system support and lack of structured psychosocial services. It is recommended that health systems strengthen psychosocial support services and integrate caregiver-focused interventions. Community-based education and peer support programmes are also recommended to reduce stigma and improve coping among caregivers