The collaborative development of an evidence-based educational resource for self-disclosure strategies for people with epilepsy. (How-To-Tell)

Lead Researcher:

Dr Naomi Elliott

Award Date:

1 January 2013

Host Institution:

Epilepsy Ireland

Scheme:

Medical Research Charities Group Co-Fund Award

Summary:

In Ireland, 41,000 people have epilepsy. Almost one in three people with epilepsy (PWE) do not feel comfortable telling friends and family that they have epilepsy. 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. Then we will develop some teaching aids (APP, video, leaflet) to assist PWE in learning what is the best way to tell other people. We will do this by interviewing approximately 50 PWE, aged over 18, who agree to talk to us and who have experience of telling other people that they have epilepsy. We will include people who live at home or on their own, those in both early and long-term relationships, employed and un-employed. We 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.
Development of educational package: When we find out what are the best ways that adult PWE have found to tell others, we will develop a set of educational tools (APP, leaflet, video, etc.) that PWE can use in 'telling people I have epilepsy'. We will involve PWE in designing and developing these tools to make sure that they will suit them.
Ethical issues: The study will be conducted to the highest ethical standards and will receive ethical approval from Trinity College Dublin and all clinical sites.
Dissemination: The results we find, and the learning tools, will be shared widely, through Epilepsy Ireland and in the national press, to make sure there is a lot of publicity so that all PWE will be aware of how and where to find out the information.