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


Makwena M. Sibuyi
Yvone L. Molomo
Nthati L. Matebula
Thembelihle S. Ntuli

Abstract

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.


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eISSN: 2071-9736
print ISSN: 1025-9848