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

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

Principal Investigator:

Dr Veronica Lambert,
School of Nursing, Dublin City University

Investment:

�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 Dr. Lambert

Dr Lambert has been a lecturer in the School of Nursing and Human Sciences at Dublin City University since 2006. She is a registered Children's and General Nurse and completed her PhD in Trinity College in 2009. Her research is focused on healthcare communication among health professionals, families and society and on and on assessing the psychosocial healthcare needs of children and their families. Earlier this year, she was presented with the Jozien Bensing Award for talented early career research.

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.