Samman Association has been working to empower people with epilepsy for over 50 years and raising epilepsy awareness is one of its main goals.
The Mumbai Chapter (now known as Samman Association) started epilepsy education for school teachers soon after its inception in 1972, a need that has been re-emphasized over the years by people with epilepsy who attend our support group meetings which is another successful activity of ours that started in November 1991.
The fact that young minds can be moulded more easily prompted Samman to focus on epilepsy education for students of the 8th and 9th grades and their teachers. In 2010, a concerted effort to systematically educate them was initiated when Samman collaborated with UCB Pharma to conduct the E-STAR program (Epilepsy Student Teacher Awareness Reach-out).
2016 onwards saw a huge surge in epilepsy education programs but these programs were largely for principals and teachers of the entire school or their primary or secondary sections. These were all physical sessions and involved a lot of time and effort which limited our reach. A brief evaluation was carried out with teachers answering identical questionnaires prior as well as post-education which helped us understand shifts in knowledge and attitude. Responses from approximately 400 teachers were summed up in an article which appeared in the Times of India a leading Daily Newspaper.
In December 2019, paediatric neurologist Dr. Pradnya Gadgil had the opportunity of meeting the Jt. Commissioner of the Mumbai Municipality and requested his permission to educate all the Municipal Corporation teachers based in Mumbai. The Municipal Corporation is the local governing body that runs schools in Mumbai which caters largely to the underprivileged. Samman was asked to first educate their principals and key opinion leaders with an online module. It was very well received by them (around 100) and permission was then given to educate all their teachers.
When the pandemic struck in early 2020 it forced all educationists to learn and accept the use of technology. This made it easier for Samman to continue with online education and this program continued till the end of October 2021. The total duration of each session was one hour, half of which consisted of a PowerPoint presentation that covered the basics of epilepsy, first aid instructions and issues relating to stigma. This was followed with a Q&A session and an informal discussion with the teachers. This resulted in the education of a total of 6997 teachers! Pre and post-questionnaires were answered via a google form to ascertain knowledge of epilepsy and the impact of the module. Sessions were conducted by the Samman Managing Committee members comprising Dr. Pravina Shah, Dr. Pradnya Gadgil, Dr. Jayanti Mani, Dr. Urvashi Shah, Dr. Sangeeta Ravat and Dr. Joy Desai with help from Pooja Nandi, Carol D’Souza, Nola Shah and Kavita Shanbhag.
Pre epilepsy education 43% of teachers said that their first aid would consist of giving an onion or leather slipper to the child having a seizure; post education this reduced to 13%. Were these 13% actually present during the presentation? We don’t know and this indeed is a limitation of online education.
Post epilepsy education 93% of teachers reported they would:
- Be able to recognize a child having a seizure
- Be able to explain epilepsy to others
- Recommend that children with epilepsy should go to normal school
- Know what to do if a child experienced a seizure
The teachers were very forthcoming with questions that ranged from dealing with the panic created by witnessing a seizure, to issues regarding causes and heredity. Many shared their personal classroom experiences with children with epilepsy. Overall, the feedback was extremely positive with 98% of teachers reported that it was an excellent / very good/good program.
Additionally, in November 2020 Samman collaborated with IIT Techfest, Mumbai, and on one day helped conduct a nationwide epilepsy education program where 40 Neurologists educated children from 40 schools located all over India, reaching around 1000 students and their teachers.
As our education programs continued, we felt we needed to create an animated educational film that could explain epilepsy to adults as well as children. By the end of 2021, our 5-minute animated film was ready in 3 languages. This is titled ‘Jio Samman Se’ (Live with Respect).
The next project planned is the education of General Physicians attached to the Mumbai Municipal Schools for which we await approval. It would be a nice way to cap our Golden Jubilee Celebrations!
Reported by Carol D’Souza, Samman Association, Mumbai Chapter of Indian Epilepsy Association
