Community perspectives and recommendations to reduce epilepsy stigma and enhance effective management of epilepsy in...

The Intersectoral Global Action Plan (IGAP) for Epilepsy and other Neurological Disorders aims to improve access to quality care, including diagnosis, treatment, and support services for people with epilepsy (PWE). Adolescents with epilepsy (AWE) comprise a highly vulnerable group, with limited access to treatment, higher seizure-related risks, and poor quality of life. However, there are hardly any systematic descriptions of the community perspectives on how the care and treatment of epilepsy can be improved in this group.

The study aimed to establish the primary ideas within the community of proposed interventions that can improve the care and treatment of AWE in Uganda.

A qualitative study, using semi structured focus group and in-depth interview guides, explored the perspectives of 128 participants enrolled from Wakiso district, Uganda. Sample included AWE (n = 22); Caregivers of AWE (n = 22); Health workers (n = 24); Teachers (n = 19); Local leaders (n = 14); Religious leaders (n = 6); Traditional healers (n = 5); Village health team members (n = 10) and other community members (n = 6). Using Dedoose software, thematic analysis ascertained commonly occurring themes about perceptions and recommendations for epilepsy care.

All community groups emphasized the profound stigmatization of AWE/PWE. Four major themes summarized the proposed areas to impact care and well-being: education of AWE/PWE and their families; development of a broad epilepsy community sensitization campaign, restoration and strengthening of the epilepsy healthcare infrastructure, and government commitment to epilepsy health service provision.

The community recommendations prioritized as key in improving the care for PWE/AWE in Uganda, aligns with the IGAP. Their adoption is critical in ensuring effective management of epilepsy in Uganda.