Impact of a Community Based Engagement Program Focused on Adolescents With Epilepsy

The goal of this community based observation study is to co-create solutions that empower people to make informed decisions about epilepsy, reduce stigma, and promote community health among the adolescent population living with epilepsy in Uganda. The main objectives of the study are to: Goal 1: Co-create a unique patient-community engagement program (CEP) to reduce stigma on epilepsy among adolescents and their caregivers in Uganda based on understanding of the illness. Goal 2: Evaluate the impact of this CEP to reduce stigma on epilepsy among adolescents and their caregivers in Uganda, based on understanding of the illness. Study participants together with the relevant community stakeholders will co-design feasible communication and activity-based change projects that are based on both cultural and scientific norms, to reduce epilepsy stigma in the community Researchers will then compare the Quality of Life, Attitudes and Beliefs about Living with Epilepsy scores (as a surrogate of stigmatizing beliefs and practices among community members) and the Kilifi Stigma Scale scores in two parishes (urban and rural) to see if there is improvement in these assessments scores following the implementation of the community change projects.

NCT Number	NCT05660239
Lead Sponsor	Makerere University Collaborators: Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), Duke University
Conditions	Epilepsy
Enrollment	70 participants
Start Date	2024-03
Primary Completion	2026-03 (estimated)
Study Completion	2026-09 (estimated)
Updated on ClinicalTrials.gov	2023-09-05