Epilepsy is widely recognised as a global health challenge. However, within South Africa, stigmatisation of people living with epilepsy and misconceptions amongst communities persist, largely attributed to inadequate communication and education. This study aimed to develop and validate an epilepsy awareness programme for rural communities in Limpopo and Mpumalanga provinces. The study employed a participatory action research method comprising four phases: a systematic review; an empirical phase (explanatory sequential mixed method); meta-inference and conceptualisation; and the development and validation of an awareness programme. The empirical phase entailed two stages: Stage 1 (quantitative), and Stage 2 (qualitative). Meta-inferences and conceptualisation were performed to derive meaning and connection between the two stages in the first phase which revealed that there is a general awareness of epilepsy in communities, but a significant portion lacks knowledge, leading to low awareness and poor practices. Healthcare providers and caregivers, despite being the patient’s first contact for epilepsy care, have shown discrepancies in practice, knowledge, and attitudes toward epilepsy. Furthermore, existing knowledge amongst participants is distorted by persistent misconceptions and stigma, revealing a collective understanding shaped by societal education rather than a comprehensive grasp of epilepsy. The outcome of these phases informed the epilepsy awareness programme and reinforced the need for epilepsy education and awareness to improve the quality of life of people living with epilepsy and their families. Both internal and external ethical considerations were adhered to. Rigour was ensured by establishing study dependability, transferability, conformability, piloting, and ensuring the study was reliable.
Keywords: Attitudes toward epilepsy, Epilepsy, Epilepsy awareness programme, Epilepsy awareness, Epilepsy knowledge, Quality of life, Rural.