Epigraph Vol. 24 Issue 2, Spring 2022

Epilepsy education for teachers: Creating epilepsy-smart schools in India

Reported, edited and produced by Nancy Volkers, ILAE communications officer

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Podcast Transcript

Children spend a lot of time in school, and that includes children with epilepsy. But most teachers don’t receive training in what epilepsy is, what seizures look like, or what to do if a student has a seizure.

Creating epilepsy-smart schools through teacher training has been the focus of initiatives in many countries. In India, a three-year initiative is underway led by Dr. Sulena Singh, who works in a government hospital in a rural area of Punjab.

Headshot of Dr. Sulena Singh
Dr Sulena, DM Neurology (India)

Dr. Sulena: So when I started working here, I found many children coming to us with epilepsy, so I thought, let’s start something related to epilepsy. I was very fortunate to get the guidance of Gagandeep Singh. He guided me in the project. I’m the PI on the project and we have four other co-investigators, which include Dr. Gagandeep, as well as we have a pediatrician, we have people from community medicine and from the medicine department.

We got it funded by the Indian Council of Medical Research in Delhi. It’s a three-year project. We did surveys of registers. There is a project in India, the Rashtriya Bal Swasthya Karyakram (RBSK), or the National Child Health Program. This covers 21 to 30 diseases, among them epilepsy. It was started in 2013 and the aim is to screen children ages 0 to 18 of age, especially those studying in government schools. They are screened and then referred to primary care, secondary care, and tertiary care if needed. So we are trying to see how much coverage of epilepsy is being done by this program.

There is a mobile health team that visits every school every year. They screen all the students for any possibility of epilepsy and if they find it, they give them a card and they refer them to the hospital. But there is a gap – sometimes children don’t come to the school, for many reasons – logistical issues, personal issues. We screened for one year and out of about 60,000 registered students, there were only 41 children with epilepsy.

Based on prevalence estimates, there should be between 480 and 600 children with epilepsy in the registry. Even if half of these children don’t attend school and would be missed, there’s still a big gap between the 41 students listed as having epilepsy and the actual number of students with epilepsy.

Dr. Sulena: To compare these results, we did two other surveys. One was in the community and the other was school based. We covered 10,000 children in each, and we are trying to find how many children have epilepsy.

The results of the screening registers and community survey – there’s a lot of gap between the actual children who have epilepsy and those who come forward for help, for treatment. There are many factors contributing to this treatment gap. First of all, people are not aware of epilepsy. And there’s a lot of stigma – people don’t want to talk about it. Even now when we go for surveys, we get the help of ASHA workers, volunteers from their community. They know a child is having seizures but sometimes the parents don’t agree, they don’t come forward and say that the child is having problems. And that is contributing to the treatment gap.

Peope acting out a demonstration on how to properly respond to a seizure during an interactive teacher education program on epilepsy in India
A demonstration on how to properly respond to a seizure during an interactive teacher education program on epilepsy in India

We thought that if we educated the teachers – half the time of childhood is spent in school and with teachers, so if teachers are positive toward this disease, they will be more open to the children that have epilepsy and more supportive of them, and I think that will contribute a lot to improving coverage of epilepsy.

We did a program for the schoolteachers where we did an intervention – we educated the schoolteachers. We invited four neurologists; they gave lectures which were very interactive, and along with that, with every lecture there were role plays enacted by the students in nursing, physiotherapy and speech therapy classes. In the vernacular language.

It was a very worthwhile thing to see how they showed the various types of seizures. Second, there was a discussion of myths and misconceptions in our community about epilepsy. Third, what are the rescue medicines used in children during a seizure and what first aid should be given to a child with epilepsy. It was a one-day program and to assess the outcomes, we did a pre- and post- evaluation in the teachers. We are getting the results analyzed now on that.

So, we found that it was a fruitful exercise. The next day, we met with a subgroup of the teachers and found they sent us photos of the morning assembly of them. They educated the other teachers, and the students.  We found it was very inspiring for them. We thought we could do more in that effort, so now we are planning to educate more about epilepsy to schoolteachers who can really make a difference in the lives of these children.

That’s amazing – that’s so great. How many teachers came to the event?

Dr. Sulena: There were around 250 teachers.

And then they went back to their own schools and taught everyone else what you had taught them? What sorts of scenarios were role played?

Dr. Sulena: We did one very interesting role play – first we showed that there’s a classroom, child has a seizure, and a teacher and student attend to it – and they do all the wrong things. So we show all the wrong things. Then we give a lecture about how to manage it, and then another role play but this time it’s handled the right way. This was appreciated by teachers because they could see where they might make mistakes.

We also educated the mobile health teams in this one-day workshop. Now we plan to see whether it made any difference by seeing the screening registers again for this year. When they do the screening, they don’t have any protocol or lists, or questions – it’s just knowledge they have acquired in their graduation. These are AYUSH doctors, doctors of alternative medicine in India, so sometimes there is a gap in their knowledge of epilepsy. We have regular meetings with them and teach them little parts, but for the teachers I would like to take it up on a larger scale so not just one district but the whole system is educated about it.