Social aspects of young people with epilepsy

Abstract

I have been working with people with epilepsy for the past seven years on voluntary basis. Being the child with Epilepsy or the parents of the child is hard to accept that you or your child cannot do everything other people who do not have epilepsy can do. It is difficult to contact patients who have epilepsy. This can be due to the fact of data protection act and also stigma. I carried out interviews with six participants with epilepsy of which three were males and three females. All my participants have claimed that they had a seizure in front of their peers and few of their friends know they have epilepsy. In this case we can see the strong amount of stigma there is about this condition, which also resulted in the interviews I carried out. Most of the participants talk about epilepsy at home as a family. I also interviewed the parents. The parents who were interviewed had never participated or shown any interest to participate in one of the conferences organised by the Malta Caritas Epilepsy Association. Most of the parents claimed that they find that no one understands them and they do not really find the comfort they are looking for. Most of the parents spoke about the problem that children with epilepsy do not get the help of a facilitator at school unlike other children with different conditions. A youth worker should be aware of such conditions, being in a youth group or in a school.