A Conceptual Model to Enhance the Acceptability of People with Epilepsy in Limpopo and Mpumalanga Provinces, South Africa: A Multiphase Mixed-Methods Study

People with epilepsy (PWE) in rural settings often experience challenges that extend beyond seizure control, including stigma, caregiver strain, limited social support, and barriers to care. Family and community acceptability of PWE may shape inclusion, support, and quality of life, yet it remains underexplored in rural South Africa. To develop and expert-validate a conceptual model intended to enhance the acceptance and inclusion of people with epilepsy within families and communities, drawing on evidence from family caregivers in selected rural communities in Limpopo and Mpumalanga provinces, South Africa. A multiphase mixed-methods design was used. Phase 1 involved a systematic review to identify determinants, barriers, facilitators and theoretical approaches relevant to the acceptance and inclusion of people with epilepsy. Phase 2 employed an explanatory sequential mixed-methods design, represented as QUAN → qual. The quantitative strand was conducted and analysed first and comprised a cross-sectional survey of 384 family caregivers using a self-developed questionnaire assessing epilepsy-related beliefs and stigma; practical, social and financial burden; emotional and safety-related burden; health-system and community barriers; and perceived support and enabling conditions. The subsequent qualitative strand used in-depth interviews to explain, contextualise and extend the quantitative findings by examining caregivers’ lived experiences, hidden labour, psychological burden, economic and livelihood impacts, and coping and support pathways. Phase 3 involved the formal integration and triangulation of the systematic review, quantitative and qualitative findings. Phase 4 focused on conceptual model development and expert content validation. Caregivers reported limited perceived support and enabling conditions, with a mean score of 6.52 out of 20 (SD = 2.77). After adjustment, caregivers at the selected Mpumalanga site reported lower support and enabling-environment scores than those at the Limpopo site (B = −1.13; 95% CI −1.71 to −0.54; p < 0.001). A greater emotional and safety-related burden was associated with lower perceived support (B = −0.31; 95% CI, −0.44 to −0.18; p < 0.001), whereas caregiver age was not independently associated with the outcome. Qualitative findings showed that caregiving was characterised by continuous and frequently hidden labour, psychological and embodied burden, stigma, structural and economic constraints, and fragile support pathways. Integration of the evidence informed a multilevel model proposing that strengthened support may improve caregiver coping and create conditions conducive to greater acceptance and inclusion of people with epilepsy by families and communities. Family caregivers in the selected rural settings reported limited support and substantial caregiving, stigma-related and structural challenges. The FAME-Care Model provides an empirically grounded and expert-informed framework proposing that strengthened emotional, informational and instrumental support may create more enabling conditions for the acceptance and inclusion of people with epilepsy. Its proposed pathways require prospective and intervention-based testing.