Developing and Validating an Epilepsy Awareness and Education Program: Bridging Gaps in Knowledge and Support for People Living with Epilepsy and Their Families

Abstract

Various epilepsy studies on epilepsy awareness and knowledge highlight underlying myths, misconceptions, stigma, and discrimination associated with epilepsy, People Living with Epilepsy (PLWE), and their families. This study aimed to develop an epilepsy awareness and education programme to enhance epilepsy awareness and support among individuals living with epilepsy and their families. Participatory Action Research (PAR) laid the ground for the programme’s investigation, development, and implementation. The study stakeholders (co-researchers) included PLWE, family members and caregivers (FMCs), community members, and health care providers (HCPs) who participated in the inception of the study, data collection, programme development, and validation. The study included four phases: phase one was a systematic review, phase two was an empirical phase that included an explanatory sequential mixed method, phase three was meta-inferences and conceptualization, and the last phase was the development and validation of the programme. All phases of the study informed the development of the programme (using a step-step guide to programme development). From these, the gaps and potential education needs were identified. Gaps such as insufficient knowledge about epilepsy in rural communities, negative attitudes and satisfactory awareness, and a need for support and care for PLWE and FMCs. Implementation of this programme will improve epilepsy knowledge, care, and support in marginalised communities, establishing a more conducive environment and ultimately improving the quality of life for patients and their families.