“As time passes, her disability becomes severe.” The struggles and challenges of caring for children living with spina bifida and hydrocephalus in Uganda: perspectives from caregivers

Purpose: Spina bifida and hydrocephalus (SBH) are common neural tube defects that cause brain and spinal cord damage leading to loss of sensation, paralysis, deformities, and bladder/bowel dysfunction. Children with these conditions require substantial caregiving support. However, the specific challenges caregivers face remains poorly understood. This study explored the experiences of parents and siblings caring for a child or young adult with SBH. Methods: Semi-structured interviews were conducted with 18 parents and 12 siblings in Central Uganda to understand their caregiving experiences. Thematic analysis was used to identify key challenges. Findings: Caregivers reported significant challenges, including lack of knowledge about the condition, stigma and negative attitudes, inadequate healthcare services, lack of social support, financial strain, and difficulties managing health and hygiene. These challenges also disrupted their employment, schooling, and overall well-being. Conclusions: Caregivers face challenges such as limited resources, stigma, and financial strain, affecting both their well-being and the quality of care provided. Addressing these barriers requires improved healthcare services, greater community awareness, and enhanced social and financial support. Strengthening support systems for parents and siblings is essential to improving care and health outcomes for children. Targeted interventions are needed to better support caregivers and mitigate the burden of caregiving.