Publication
Title
Community perceptions and attitudes regarding epilepsy and disease cost after implementation of a community-based epilepsy treatment program in onchocerciasis-endemic communities in the Democratic Republic of Congo
Author
Abstract
Background: In October 2017, a community-based epilepsy treatment program (CBETP) was initiated in the Logo health zone (Ituri province, Democratic Republic of Congo), consisting mainly of community epilepsy education, provision of free antiepileptic drugs (AEDs), and monthly follow-up of persons with epilepsy (PWE). Prior to the implementation of the CBETP, qualitative research had revealed several misconceptions about the cause of epilepsy, major epilepsy-related stigma, and high economic cost for families of PWE mainly because of costly treatment by traditional healers. One year after the implementation of the CBETP, we assessed the perceived effect of this program on the community's perceptions and attitudes regarding epilepsy and on disease costs. Methods: Focus group discussions (FGD) and semi-structured in-depth interviews (SSI) were conducted with different target groups. Additionally, the cost associated with epilepsy was evaluated using questionnaires administered to 74 PWE and/or their families. Results: Nine FGDs and 16 SSIs were conducted. There was a notable shift in perceptions and attitudes, as most community members no longer believed that epilepsy is contagious, while acknowledging that this condition can be treated in local health centers. Persons with epilepsy and their family experienced less epilepsy-related stigma and consulted less frequently traditional healers; the latter showed a growing willingness to collaborate with health professionals in the management of PWE. The direct and indirect costs for families caring for a PWE decreased by 95.2% and 95.7%, respectively. Conclusion: The main perceived benefits of the CBETP were the decrease in misconceptions about epilepsy and epilepsy-related stigma. Families with PWE understood the benefit of seeking health care from trained health professionals rather than with traditional healers. The direct and indirect costs for families to take care of a PWE reduced considerably after the program. However, the cost-effectiveness and long-term sustainability of this approach remain to be assessed. (C) 2021 The Author(s). Published by Elsevier Inc.
Language
English
Source (journal)
Epilepsy and behavior. - San Diego, Calif., 2000, currens
Publication
San Diego, Calif. : Academic Press , 2021
ISSN
1525-5050 [print]
1525-5069 [online]
DOI
10.1016/J.YEBEH.2021.107773
Volume/pages
116 (2021) , 8 p.
Article Reference
107773
ISI
000617709000036
Pubmed ID
33515932
Medium
E-only publicatie
Full text (Publisher's DOI)
Full text (open access)
UAntwerpen
Faculty/Department
Research group
Project info
Nodding Syndrome: a trans-disciplinary approach to identify the cause and decrease the incidence of river epilepsy (NSETHIO).
Ways to mitigate the public health problem caused by onchocerciasis-associated epilepsy.
Publication type
Subject
Affiliation
Publications with a UAntwerp address
External links
Web of Science
Record
Identifier
Creation 30.03.2021
Last edited 02.10.2024
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