Dear HIFA colleagues,
'Stigma in epilepsy is due to the presence of superstitions and wrong cultural beliefs that lead to social isolation of PWE contributing to their poor quality of life', say the authors of this paper. 'Moreover, poor knowledge and consequent stigma constitute important barriers for epilepsy management, especially in LMIC.'
Citation, highlights, abstract, selected extract and a comment from me, below.
CITATION: Knowledge, stigma, and quality of life in epilepsy: Results before and after a community-based epilepsy awareness program in rural Bolivia
Loretta Giuliano et al.
Epilepsy & Behavior, Volume 92, March 2019, Pages 90-97
- Epilepsy represents around 0.7% of the overall global burden of diseases.
- Education is the best method to improve knowledge and reduce stigma in epilepsy.
- Educational campaigns could lead to a significant change in the social perception and attitudes toward epilepsy.
Introduction: Epilepsy represents around 0.7% of the overall global burden of diseases and is particularly prevalent and associated with significant disability in low- and middle-income countries (LMIC) in Latin American Countries (LAC). A community-based epilepsy awareness program was carried out by our group in the rural areas of the Chaco region, Plurinational state of Bolivia, to improve the knowledge about epilepsy, with a first part directed toward general practitioners and a second part toward nurses and community health workers (CHWs) of the rural communities with a positive outcome.
The objective of the study was to assess the level of knowledge, attitudes, and practices toward epilepsy, the stigma related to epilepsy and the quality of life in people with epilepsy (PWE) before and after the interventional campaign directed toward representative members of the rural communities in the Chaco region in Bolivia.
Methods: The study was conducted in three areas of Bolivia. Key subjects from each community were randomly selected. Before and after the courses they answered a questionnaire to assess their knowledge, attitudes, beliefs, and practices about epilepsy, a validated Stigma Scale of Epilepsy (SSE) and Quality of Life in Epilepsy Inventory-10 (QOLIE-10).
Results: Two hundred sixteen subjects were involved in the program. Only 133 (61.6%) subjects completed the questionnaires a month after the educational program. A significant improvement was recorded in knowledge, attitudes, and practices toward epilepsy, and a significant reduction was found in the mean SSE total score (38.3 ± 14.7 vs. 28.5 ± 12.3; p < 0.01), reflecting a reduction of stigma levels. Regarding the quality of life, after the training, PWE stated to experience less depression, memory difficulties, work or social issues, and seizure worry.
Conclusion: Our study confirms that continuous educational campaigns can lead to a significant change in the social perception and attitudes toward epilepsy.
In many parts of the world people with epilepsy (PWE) and their families suffer from stigma and social discrimination. In particular, stigma in epilepsy is due to the presence of superstitions and wrong cultural beliefs that lead to social isolation of PWE contributing to their poor quality of life. Moreover, poor knowledge and consequent stigma constitute important barriers for epilepsy management, especially in LMIC, representing contributing factors to epilepsy TG.
COMMENT (NPW): The intervention was quite comprehensive and it seems unlikely that it is scaleable nationally. I cannot help but wonder if we are making the same mistake in health education as we (the global health community) are making in the delivery of health services - namely, health education tends to be verticalised in specific disease siloes. One way to have a more horizontal impact might be to strengthen the health education of school-age children. To complement this, mobile phones could be used more widely in the general population to provide on-demand health education and guidance (along the lines provided by Where There is No Doctor and other publications). The HIFA Mobile Healthcare Information For All working group has been calling for this approach for some years (https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(15)00054-6/fulltext), but the focus from WHO and others continues to be on pushing targeted information to people (as in the current WHO Digital Health guidelines) rather than empowering them with a range of on-demand healthcare information.
Best wishes, Neil
Coordinator, mHIFA Project (Mobile Healthcare Information For All)
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