Hidden labour of caregiving for persons with epilepsy in Limpopo and Mpumalanga provinces, South Africa: a qualitative study

Résumé

Caregiving for persons with epilepsy is frequently conceptualised in terms of burden and stigma; however, such framings often obscure the labour-intensive nature of everyday caregiving practices. In rural South Africa, informal caregivers undertake extensive unpaid work that sustains the safety, well-being, and treatment continuity of persons with epilepsy. This study aimed to explore the hidden labour embedded in caregiving for persons with epilepsy in Limpopo and Mpumalanga Provinces. A qualitative exploratory-descriptive design was employed, involving in-depth semi-structured interviews with 60 caregivers of persons with epilepsy. Data were analysed using inductive thematic analysis, with interpretation guided by a labour-oriented analytical lens. The findings revealed three interconnected dimensions of hidden labour: (1) constant surveillance: continuous monitoring and caregiving readiness, characterised by continuous vigilance and caregiving demands; (2) protective labour: anticipating, preventing, and responding to seizure-related risk; and (3) sacrificial labour, involving restricted mobility, lost personal time, and constrained economic participation, where caregivers experienced reduced autonomy, limited social participation, and disruptions to employment and daily activities. These forms of labour were further intensified by socio-economic constraints, emotional strain, stigma, and limited access to formal health services. The study highlights caregiving as an invisible yet essential labour system that effectively substitutes formal healthcare within households. Recognising and supporting caregivers as key contributors to epilepsy care is critical for strengthening equitable and responsive health systems in resource-limited settings.

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