Community perceptions of epilepsy and its treatment in an onchocerciasis endemic region in Ituri, Democratic Republic of Congo
Abstract Background A recent study in the Logo and Rethy health zones in the Ituri Province in the Democratic Republic of Congo (DRC) reported that the majority of the persons with epilepsy (PWE) had not been treated with anti-epileptic medication (AEM) or had stopped treatment. Prior to the impleme...
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| Format: | Article |
| Language: | English |
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BMC
2018-12-01
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| Series: | Infectious Diseases of Poverty |
| Subjects: | |
| Online Access: | http://link.springer.com/article/10.1186/s40249-018-0498-0 |
| _version_ | 1828299849698639872 |
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| author | Housseini Dolo Michel Mandro Deogratias Wonya’Rossi Francoise Ngave Jessica Fraeyman Joseph N. Siewe Patrick Suykerbuyk Robert Colebunders |
| author_facet | Housseini Dolo Michel Mandro Deogratias Wonya’Rossi Francoise Ngave Jessica Fraeyman Joseph N. Siewe Patrick Suykerbuyk Robert Colebunders |
| author_sort | Housseini Dolo |
| collection | DOAJ |
| description | Abstract Background A recent study in the Logo and Rethy health zones in the Ituri Province in the Democratic Republic of Congo (DRC) reported that the majority of the persons with epilepsy (PWE) had not been treated with anti-epileptic medication (AEM) or had stopped treatment. Prior to the implementation of an epilepsy treatment programme in these health zones, this study investigated the perceptions and experiences regarding epilepsy and its treatment amongst community leaders, PWE and/or their families, traditional healers and health professionals. Methods A total of 14 focus group discussions (FGD) and 39 semi-structured interviews (SSI) were conducted with PWE and/or their family members, community leaders, traditional healers, and health professionals in the Logo and Rethy health zones during February 2–19, 2017. Results In the two health zones, the clinical signs of convulsive epilepsy were recognized by community members. However, a variety of misconceptions about epilepsy were identified including the beliefs that epilepsy is a family-related condition, a contagious disease, is transmitted by insects, saliva or by touching a person of the same sex during seizures, or is caused by evil spirits and witchcraft. The role of traditional healers in spreading these beliefs was revealed. The study also reported sexual abuse on PWE, stigmatisation of PWE and loss of productivity of PWE and their families. Some PWE had been using AEM and traditional treatment but were not convinced about the efficacy of these treatment options. The lack of training of health providers about epilepsy care, financial barriers in obtaining AEM, and the shortage of AEM at primary health facilities were revealed. As remedies, the community requested access to a decentralized center for epilepsy treatment. They also proposed using churches and community health workers as communication channels for information about epilepsy. Conclusions Clinical signs of convulsive epilepsy were recognized by the community in the Logo and Rethy health zones but many misconceptions about epilepsy were identified. A comprehensive community-based epilepsy treatment programme with an affordable uninterrupted AEM supply needs to be established. Such a programme should address stigma, misconceptions, sexual abuse and foster the rehabilitation of PWE to alleviate poverty. |
| first_indexed | 2024-04-13T13:00:08Z |
| format | Article |
| id | doaj.art-ebb599cb77ea483bb000dfa28f100c4b |
| institution | Directory Open Access Journal |
| issn | 2049-9957 |
| language | English |
| last_indexed | 2024-04-13T13:00:08Z |
| publishDate | 2018-12-01 |
| publisher | BMC |
| record_format | Article |
| series | Infectious Diseases of Poverty |
| spelling | doaj.art-ebb599cb77ea483bb000dfa28f100c4b2022-12-22T02:45:56ZengBMCInfectious Diseases of Poverty2049-99572018-12-01711910.1186/s40249-018-0498-0Community perceptions of epilepsy and its treatment in an onchocerciasis endemic region in Ituri, Democratic Republic of CongoHousseini Dolo0Michel Mandro1Deogratias Wonya’Rossi2Francoise Ngave3Jessica Fraeyman4Joseph N. Siewe5Patrick Suykerbuyk6Robert Colebunders7Global Health Institute, University of AntwerpGlobal Health Institute, University of AntwerpProvincial Ministry of HealthCentre de Recherche en Maladies Tropicales de l’Ituri, Hopital General de Reference de RethyResearch Group Social Epidemiology and Health Policy, University of AntwerpGlobal Health Institute, University of AntwerpGlobal Health Institute, University of AntwerpGlobal Health Institute, University of AntwerpAbstract Background A recent study in the Logo and Rethy health zones in the Ituri Province in the Democratic Republic of Congo (DRC) reported that the majority of the persons with epilepsy (PWE) had not been treated with anti-epileptic medication (AEM) or had stopped treatment. Prior to the implementation of an epilepsy treatment programme in these health zones, this study investigated the perceptions and experiences regarding epilepsy and its treatment amongst community leaders, PWE and/or their families, traditional healers and health professionals. Methods A total of 14 focus group discussions (FGD) and 39 semi-structured interviews (SSI) were conducted with PWE and/or their family members, community leaders, traditional healers, and health professionals in the Logo and Rethy health zones during February 2–19, 2017. Results In the two health zones, the clinical signs of convulsive epilepsy were recognized by community members. However, a variety of misconceptions about epilepsy were identified including the beliefs that epilepsy is a family-related condition, a contagious disease, is transmitted by insects, saliva or by touching a person of the same sex during seizures, or is caused by evil spirits and witchcraft. The role of traditional healers in spreading these beliefs was revealed. The study also reported sexual abuse on PWE, stigmatisation of PWE and loss of productivity of PWE and their families. Some PWE had been using AEM and traditional treatment but were not convinced about the efficacy of these treatment options. The lack of training of health providers about epilepsy care, financial barriers in obtaining AEM, and the shortage of AEM at primary health facilities were revealed. As remedies, the community requested access to a decentralized center for epilepsy treatment. They also proposed using churches and community health workers as communication channels for information about epilepsy. Conclusions Clinical signs of convulsive epilepsy were recognized by the community in the Logo and Rethy health zones but many misconceptions about epilepsy were identified. A comprehensive community-based epilepsy treatment programme with an affordable uninterrupted AEM supply needs to be established. Such a programme should address stigma, misconceptions, sexual abuse and foster the rehabilitation of PWE to alleviate poverty.http://link.springer.com/article/10.1186/s40249-018-0498-0EpilepsyOnchocerciasisCommunityPerceptionExperiencesTreatment |
| spellingShingle | Housseini Dolo Michel Mandro Deogratias Wonya’Rossi Francoise Ngave Jessica Fraeyman Joseph N. Siewe Patrick Suykerbuyk Robert Colebunders Community perceptions of epilepsy and its treatment in an onchocerciasis endemic region in Ituri, Democratic Republic of Congo Infectious Diseases of Poverty Epilepsy Onchocerciasis Community Perception Experiences Treatment |
| title | Community perceptions of epilepsy and its treatment in an onchocerciasis endemic region in Ituri, Democratic Republic of Congo |
| title_full | Community perceptions of epilepsy and its treatment in an onchocerciasis endemic region in Ituri, Democratic Republic of Congo |
| title_fullStr | Community perceptions of epilepsy and its treatment in an onchocerciasis endemic region in Ituri, Democratic Republic of Congo |
| title_full_unstemmed | Community perceptions of epilepsy and its treatment in an onchocerciasis endemic region in Ituri, Democratic Republic of Congo |
| title_short | Community perceptions of epilepsy and its treatment in an onchocerciasis endemic region in Ituri, Democratic Republic of Congo |
| title_sort | community perceptions of epilepsy and its treatment in an onchocerciasis endemic region in ituri democratic republic of congo |
| topic | Epilepsy Onchocerciasis Community Perception Experiences Treatment |
| url | http://link.springer.com/article/10.1186/s40249-018-0498-0 |
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