Collaborative Development of an Evidence-based Educational Resource for Self-disclosure Strategies for People With Epilepsy

Principal Investigator:
Dr Naomi Elliott, Trinity College Dublin

Investment:
€149,000 over three years. 50% of the funding for this project has been made available by the Health Research Board (HRB) through the Joint Funding Scheme operated by the HRB and the Medical Research Charities Group, of which Epilepsy Ireland is a member. Epilepsy Ireland will fund the other 50% through fundraising.

About the project

Almost one in three people with epilepsy (PWE) do not feel comfortable telling friends and family that they have the condition. More than half are not comfortable telling their employer and work colleagues. Telling colleagues or friends that you have epilepsy is necessary so that if you have a seizure they can look after you. However, little is known about how adult PWE tell or who they tell.

This study will explore the concerns that adult PWE have about telling and find out what ways they find are best to tell other people. The team will then develop some teaching aids (app, video, leaflets etc) to assist PWE in learning what is the best way to tell other people.

The researchers will do this by interviewing approximately 50 PWE, aged over 18, who agree to talk about their experience of telling other people that they have epilepsy. The study will include people who live at home or on their own, those in both early and long-term relation-ships, employed and un-employed. The team will study and analyse the interviews carefully to see what are the main ideas coming out. Team members will agree the main ideas between them and discuss them with PWE, to make sure that they are right.

After this stage, the research team will develop a set of educational tools that PWE can use in 'telling people I have epilepsy'. They will involve PWE in designing and developing these tools to make sure that they will suit them.

Results

Disclosure strategies in adults with epilepsy when telling, “I have epilepsy”: The How2tell study
Elliott N, Pembroke S, Quirke M, Pender N, Higgins A. Epilepsia. 2019;00:1–12. https ://doi.org/10.1111/epi.16338

Becoming comfortable with “my” epilepsy: Strategies that patients use in the journey from diagnosis to acceptance and disclosure
Epilepsy & Behaviour, 70, 2017, p217 – 223

Becoming Comfortable with MY Epilepsy: The How2tell Study
Grounded Theory Review, 2017

How 2 Tell Website and Resources

Dr Naomi Elliott speaking at Epilepsy Ireland National Conference 2017 (see video below)