Coping and support pathways among family caregivers of persons with epilepsy in rural South Africa: implications for disability-inclusive health systems in rural settings

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Abstract Background Epilepsy is a chronic neurological condition often associated with disability, requiring responsive and inclusive health systems. In rural South Africa, family caregivers of persons with epilepsy (PWE) face ongoing psychological, social, and economic strain due to the unpredictable nature of seizures, persistent stigma, and limited access to disability-inclusive health services. While existing research has largely focused on caregiving burden, less is known about how caregivers actively cope and navigate available support pathways within constrained health systems. Objective This study explored coping strategies and support pathways among family caregivers of PWE in rural communities of Limpopo and Mpumalanga provinces, South Africa. Methods A qualitative descriptive design was employed. In-depth interviews were conducted with 60 family caregivers (30 per province) selected through snowball sampling and purposively. Interviews were conducted in local languages, audio-recorded, transcribed verbatim, and analysed using thematic analysis. Results Six themes emerged: (1) Emotional and Psychological Coping Strategies (2), Family and Community-Based Support Systems (3), religious and spiritual coping (4), financial strain and economic adaptation (5), Limited Caregiver Knowledge and Support in Managing Epilepsy, and (6) barriers to effective coping and support. Caregivers relied heavily on informal support networks and personal resilience to manage caregiving demands. Financial strain due to disrupted employment was common, while limited knowledge of seizure management and persistent stigma further constrained effective coping and access to support. Conclusion Caregivers primarily depend on informal and community-based coping mechanisms, which, although reflective of resilience, are insufficient to meet long-term caregiving needs. Strengthening disability-inclusive health systems through improved caregiver education, psychosocial support, and community-based interventions is essential to enhance caregiver well-being and sustain epilepsy care in rural settings.

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