Evidence map›Paper›PMID 40598673›Full record

ArticleBMC psychology2025

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

Mayanja M Kajumba, Paula Njeru, Neil S Prose, Aryn Mason, Pratamesh Ramasubramanian, Joanita Berytah Tebulwa, Angelina Kakooza-Mwesige, Isabelle Andrews, Tyler Johnson, Sylvia Nshemerirwe and 2 more

Abstract read
In one paragraph

Article in BMC psychology, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

5 citing papers in PubMed.

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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

12 authors.

Mayanja M KajumbaDepartment of Mental Health and Community Psychology, Makerere University, P. O. Box 7062, Kampala, Uganda. mayanja.kajumba@mak.ac.ug.ORCID http://orcid.org/0000-0002-7620-2579
Paula NjeruDuke Division of Global Neurosurgery and Neurology, Department of Neurosurgery, Durham, NC, USA.
Neil S ProseDuke University Global Health Institute, Durham, NC, USA.
Aryn MasonDuke Division of Global Neurosurgery and Neurology, Department of Neurosurgery, Durham, NC, USA.
Pratamesh RamasubramanianDuke University Global Health Institute, Durham, NC, USA.
Joanita Berytah TebulwaSupport Moms Project, Mbarara University of Science and Technology, Mbarara, Uganda.
Angelina Kakooza-MwesigeDepartment of Pediatrics and Child Health, Makerere University College of Health Sciences, Kampala, Uganda.
Isabelle AndrewsDuke University Trinity College, Durham, NC, USA.
Tyler JohnsonDuke University Trinity College, Durham, NC, USA.
Sylvia NshemerirweButabika National Referral Hospital, Kampala, Uganda.
Peter KalubiDepartment of Paediatrics and Child Health, Mbarara University of Science and Technology, Mbarara, Uganda.
Deborah KoltaiDuke Division of Global Neurosurgery and Neurology, Department of Neurosurgery, Durham, NC, USA.

Funding

Epilepsy in Uganda: Clinical characterization and co-morbidities, their relation to stigma among adolescents and impact of a community-based engagement program (AWE Change project)R01HD106277 · NICHD · MAKERERE UNIVERSITY COLLEGE OF HEALTH SCIENCES · PI KAKOOZA, ANGELINA MWESIGE · 2021 to 2025
$2.7M
National Institute for Health (NIH) grant R01HD106277NICHD NIH HHS R01 HD106277
6 · The paper itself

Abstract

backgroundDespite 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.

methodsWe 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.

resultsDespite 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.

conclusionThe 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.

Indexed as

EpilepsyHealth Knowledge, Attitudes, PracticeHealth LiteracySocial StigmaAdolescentFemaleHumansMaleUgandaBiomedicalEpilepsyHealth literacyMisconceptionsStigmaSupernatural

Identifiers

PMID40598673
PMCPMC12220273

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.