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Demystify the veil of secrecy: a mixed method inquiry of parent-child dialogue about epilepsy and its associated stigma.

Principal Investigator:

Dr Veronica Lambert,
School of Nursing, Dublin City University


92,990 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:

Many children who are living with epilepsy, and their parents, feel embarrassed about their situation and fear that others may consider them to be socially unacceptable. This can result in parents silencing discussions about the situation and excluding children with epilepsy from social activities. Such actions can portray the idea that having epilepsy is something that must not be talked about. However some parents are the opposite; striving for their children to participate fully in all social events and trying to show that epilepsy should be discussed openly.

The project aims to find out why there is such a variety in family communications, providing valuable information about the challenges (both positive and negative) that parents and children face when it comes to discussing epilepsy and its associated stigma.

This will be done in two phases. Phase one will include conducting a quantitative survey of 300 children (9-14 years) and their parents to examine each generation's perceptions on issues such as family communication patterns. Phase two will go into more detail, interviewing 30 families to learn how epilepsy is discussed in their home.

The study aims to lay the foundations for the development of a family-based communication intervention.


Talking about epilepsy: Challenges parents face when communicating with their child about epilepsy and epilepsy-related issues
Epilepsy and Behavior, 57 :9-15

"I don't want them to look at me and think of my illness, I just want them to look at me and see me": Child perspectives on the challenges associated with disclosing an epilepsy diagnosis to others.
Epilepsy Behav. 2015 Dec; 53:83-91.

The stigma experiences and perceptions of families living with epilepsy: Implications for epilepsy-related communication within and external to the family unit.
Patient Educ Couns. 2016 Sep;99(9):1473-81.