Adolescents' perspectives on health literacy interventions for reducing epilepsy misconceptions and stigma, and enhancing epilepsy management in Uganda.

BACKGROUND

Despite the advancement in medical knowledge, epilepsy is still one of the most highly misunderstood and stigmatized neurological conditions in Sub-Saharan Africa. It is widely believed to be a contagious disease, caused by demonic possession, witchcraft, or other spiritual phenomena, and in some cases attributed to both biologic and supernatural etiologies. These misconceptions and the associated stigma result in social rejection, emotional distress, and feelings of shame. Consequently, a large number of adolescents with epilepsy (AWE) avoid seeking medical treatment, resulting in increased seizure intensity and frequency, which in turn reinforces epilepsy stigma. This study sought to explore the experiences of AWE and their perceptions on health literacy interventions for minimizing misconceptions and stigma, and enhancing epilepsy management in Ugandan communities.

METHODS

We recruited 30 AWE receiving treatment from one regional and two national referral hospitals. Data was collected using focus group discussions and analyzed using thematic analysis procedures.

RESULTS

Despite the fact that our sample entirely comprised of AWE receiving biomedical care, the results revealed that the largest group of respondents (58.6%) believed that supernatural forces alone caused epilepsy, and another 20.7% attributed it to a combination of supernatural and biologic elements, while only 17.2% understood epilepsy to be an illness with a biomedical etiology. Among the most prominent misconceptions was that epilepsy is a contagious disease, and a number of the AWE reported that people around them, including teachers and family members, avoid touching them, do not allow them to share cutlery, cups, or other items, and that they are left unattended during seizures. Most of the AWE reported that they have to conceal their condition, and some reported that on discovering that they had epilepsy, they were expelled from school.

CONCLUSION

The misconceptions and stigma not only result in discrimination and emotional distress, but also hinder seeking and adhering to treatment. The AWE emphasized the need for health literacy interventions to minimize misconceptions and stigma and enhance epilepsy management in Ugandan communities.

SUPPLEMENTARY INFORMATION

The online version contains supplementary material available at 10.1186/s40359-025-03030-2.