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

Lead Researcher:

Dr Veronica Lambert

Award Date:

1 January 2012

Host Institution:

Dublin City University

Scheme:

MRCG-HRB Joint Funding Scheme

Summary:

Many children living with epilepsy, and their parents, encounter feelings of shame and embarrassment and are in constant fear of enacted stigma (i.e. being discriminated against by others on grounds of social unacceptability or inferiority). This can result in parents remaining silent and engaging in limited discussions with their child about their epilepsy and its associated stigma. Such silence can relay a message to children that having epilepsy is something that can, or should, not be spoken about. The consequence of such silence surrounding epilepsy, however, is the exclusion of children from social activities as a result of parental over-protection. Interestingly though, some parents strive for their child to achieve full participation in social activities and thus try to be open and honest in their communication with their child to portray to them that epilepsy is nothing to be ashamed of and is managed in the same way as other medical condition. Yet we do not know why some families remain silent, and others speak openly with their child about their epilepsy condition. This study will explore the challenges faced by parents, of children with epilepsy, in talking about epilepsy and its associated stigma. To do this, we propose to initially conduct a survey with 300 children with epilepsy (9-14 years) and their parents to examine children’s and parents perceptions of epilepsy and its associated stigma, family communication patterns, parenting styles, children’s seizure severity and children’s social participation. Following this survey, we aim to conduct interviews with 30 families (i.e. children with epilepsy (9-14 years) and their parents) to explore more specifically family communication about epilepsy and epilepsy associated stigma. Children’s interviews will be combined with creative tools (e.g. drawings, collages). Families will be recruited through a children’s neurology department at one children’s hospital and Brainwave-the Irish Epilepsy Association. The findings of this study will have many benefits to children and families living with epilepsy’ most specifically it will provide Brainwave with valuable information about the challenges (positive and negative) families face in conversing about epilepsy and its associated stigma. With no current intervention available, this study will help lay the foundations for the development of a family based communication intervention.