Talking about epilepsy
Researchers at DCU have announced details of a study entitled ‘Talking about Epilepsy’ which aims to analyse family communication on epilepsy and its relationship with stigma, child self-esteem, social participation and life quality. The research is being led by Dr. Veronica Lambert and Professor Pamela Gallagher from the School of Nursing and Human Sciences in DCU and is funded through Epilepsy Ireland and the Health Research Board.
The researchers hope to provide valuable information about the challenges, both positive and negative, that parents and children face when learning to communicate on living with epilepsy. The overall aim of the research is to contribute to the development of an interventional framework, hoping to improve future psychosocial wellbeing for children with epilepsy and their families.
The first phase of the study is now complete. This involved exploring family communication and disclosure of childhood epilepsy diagnosis to others directly with parents and children living with epilepsy. 40 interviews were conducted with parents and 33 children (6-16 years) living with epilepsy throughout Ireland. Some preliminary findings show the various challenges parents and children with epilepsy experience when talking about it to others.
- Some reasons why parents did not tell others about their child’s epilepsy were: parents wanted a normal life for their child; they saw epilepsy as a largely hidden condition; they anticipated or had previous experiences of negative reactions when telling others; they feared public perceptions of epilepsy; they were coming to terms themselves with the diagnosis; and parents were private in nature.
- Things that stopped children from telling other people about their epilepsy were: anticipating or having previously experienced negative reactions when telling others; feeling different; the hidden nature of epilepsy; difficulty understanding and explaining epilepsy to others; children of similar age being unable to understand epilepsy; children’s own negative perceptions of epilepsy; parental tendencies towards privacy; and others’ perceptions of epilepsy.
Some core themes also emerged about the educational experiences of children living with epilepsy. While there were many exemplars of positive experiences in terms of how teachers proactively learned about epilepsy themselves and educated others about the condition and how the school were facilitative in adapting to the child’s needs; there were also some less positive experiences related to lack of proactivity to educate self and others about the child’s epilepsy and the imposition of unnecessary restrictions on the child. Findings revealed that how schools respond to the disclosure of an epilepsy disclosure can inform parents and children’s future epilepsy related engagements with others.
Speaking about the study, Dr. Veronica Lambert, commented; “For me, this particular area of research shows how complex the issue of family communication on epilepsy really is – there are so many different social groups informing our perception of epilepsy, be it from our own families, or from friends, colleagues or classmates. Living with epilepsy requires a collective level of acceptance, open-ness and understanding from all such social groups that evidently we have not achieved yet in Ireland.”
“To overcome obstacles to understanding, it is apparent that we need to move beyond promoting epilepsy awareness through providing information, to creating social spaces that encourage open dialogue between children with and without epilepsy and others – for example, parents, health professionals and teachers – so they can demystify the condition and engage in critical debate about stigmatisation.”
Building on these findings and to learn more about children living with epilepsy and their parent’s experiences of “talking about epilepsy”, researchers at DCU are now inviting children living with epilepsy and their parent’s to participate in phase two of the study which involves completion of a questionnaire which is available online through Epilepsy Ireland website http://www.epilepsy.ie/index.cfm/spKey/news.brainwave/spId/4E88C240-09B9-4580-AB2B08FFAD90EB68.html.
Paper copies are also available and can be requested from talkingaboutepilepsy@gmail.com