Navigating care: The burden on caregivers of children with hydrocephalus in South Africa’s teaching hospitals

Background: Caregivers of children with hydrocephalus in low-resource settings face profound challenges, yet their experiences within the South African context are poorly documented. Aim: This study aimed to investigate the interrelated challenges encountered by caregivers of paediatric patients with hydrocephalus. Setting: This study was conducted at two academic tertiary hospitals in Limpopo and Gauteng provinces. Methods: A qualitative exploratory study using semi-structured interviews recruited 39 caregivers of paediatric patients with hydrocephalus. Data were analysed using inductive thematic analysis in NVivo 16 software, and the analysis was halted at saturation. Results: Caregivers were predominantly young and unemployed. Four overarching thematic challenges emerged: (1) health system challenges; (2) socioeconomic consequences of caring for a child with hydrocephalus; (3) psychosocial and caregiving burden; and (4) formal social protection availability. Conclusion: Caregivers endure severe, interconnected systemic, financial, and psychosocial burdens that critically compromise their well-being and care capacity. Findings underscore an urgent need for holistic, family-centred interventions, including systemic healthcare reforms, economic protection, integrated psychosocial support, and structured caregiver education programmes to mitigate this crisis and improve patient outcomes. Contribution: The study advances the understanding of how health system limitations intersect with poverty, amplifying caregiver vulnerability and inequity.