Table 1 Measures and interventions to decrease epilepsy stigma
Recommended Intervention | Aim | How? |
|---|---|---|
Epilepsy awareness campaign, with emphasis on OAE | Improve knowledge, decrease stigma | - Organize information campaign: locally, nationally, and internationally - Main message: Epilepsy is a non-contagious brain disease, which can be treated (not cured) - In onchocerciasis hyperendemic settings, > 85% of epilepsies are potentially caused by O. volvulus [5, 50, 52] and can therefore be prevented by adhering to CDTI. |
Reduce epilepsy treatment gap | Access to uninterrupted supply of affordable AED | - Decentralize treatment/care services for PWE - Decrease stigma by improving knowledge to stimulate positive health-seeking behavior |
Reducing knowledge gap about treatment | Improve adherence to AED treatment | - Message: AED treatment should not be interrupted - Discourage treatment using traditional medicine |
Support for affected families | Improve their quality of life | - Provide psycho-social support for PWE and their families - Organize income-generating activities |
Training healthcare workers (HCW) | Improve quality of care for PWE | - Set up comprehensive programs to train local HCW for the treatment, care, follow-up and co-morbidity management of PWE [50] |
Training of teachers | Decrease school drop-out rates | - Set up training programs for teachers on how to deal with children with epilepsy |
Support for community-based associations of PWE | Advocacy to improve the quality of life of PWE and their families | - Involve peer support groups - Use role models - Provide support for associations of PWE |
Strengthening mental/brain health services and onchocerciasis elimination program | Early diagnosis and initiation of AED treatment. Decrease O. volvulus transmission to prevent new cases of OAE | - Increase collaboration between both programmes - Set up surveillance system for epilepsy - Monitor the quality of the services for PWE - Improve adherence with CDTI, stressing the importance of taking ivermectin to prevent OAE - Bi-annual CDTI in situations of high exposure to infected blackflies. |
Strengthening the legal framework | Protect PWE against discrimination, abuse, rape | - Provide legal support for PWE |
Cost of epilepsy studies | Evaluate the cost-effectiveness of interventions | - Conduct cost-effectiveness studies for epilepsy management in onchocerciasis-endemic areas with high epilepsy prevalence, prior to interventions |
Fundraising | Increase funding for the treatment and prevention of epilepsy in onchocerciasis-endemic regions | - Establish OAE advocacy strategy - Create awareness about OAE among pharmaceutical companies, NGOs, international funding agencies - Document OAE burden of disease - Dissemination of OAE research findings - Obtain support from WHO, MOH, ILAE |