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.

Inclusion Criteria:Adolescent with epilepsy residing in Wakiso districtBetween the ages 10-18 yearsA resident of Wakiso district, Uganda for the previous six monthsConfirmed diagnosis for epilepsy as per the International League Against Epilepsy definitionProvide written assent to participation in the studyWith a caregiver willing to provide written informed consent as well as detailed history regarding them.Willing to participate in all the required program activities with his/her caregiverExclusion Criteria:Adolescent with epilepsy residing in Wakiso district whoDoes not have the time or interest to participate in the community engagement programHas had exposure to a similar previous community engagement programIs unable to fully understand what is required of him/her in the study and engage consistently throughout the whole community engagement program