The study was co-funded by Epilepsy Ireland and the Health Research Board from 2014 to 2016, exploring the concerns that people with epilepsy have about telling others they have epilepsy and what ways they find are best to tell other people.
49 adults with epilepsy took part in the study including many members of Epilepsy Ireland. The study led to a range of invaluable resources to assist people with epilepsy in learning about the best strategies to tell other people:
- Website which includes video content from a number of study participants.
- Smartphone app for Android and IOS
- Printed booklet
The lead researcher, Dr Naomi Elliott from TCD’s School of Nursing & Midwifery also presented at the 2017 National Epilepsy Conference on the study’s findings, and you can view that video here.
The Epilepsia paper discusses the different factors involved in the disclosure process that people use. It highlights that the disclosure message is typically structured in three parts:
- brief, factual information about MY epilepsy
- reassurance; and
- what to do in the event of a seizure
It also highlights that people will tailor the disclosure message according to audience needs for children, family, friends, or work.
The paper concludes that “supporting people to disclose not only is important for safety reasons, but can reduce the psychological burden associated with keeping a secret and help offset the negative impact that concealment has on stigma and social exclusion”.
Our warmest congratulations to Dr. Naomi Elliot and all the team involved in the study for their fantastic work. More information on How2Tell can be found by following the links below: