The Quality of Life Experiences of Young School Children with Epilepsy: A Pilot Study Principal Investigator: Jillian Roberts

Faculty of Education University of Victoria Telephone: (250) 721-7759 Email: jjrobert@uvic.ca Purpose The purpose of this pilot study is to better understand the quality of life of young school children with epilepsy and their families. The specific objectives are to, (1) identify the perceptions and experiences of the primary caregivers of young children with epilepsy regarding their interaction with the schools which impact both the child and familys quality of life; (2) clarify how families think schools can best support, accommodate, and prepare for these children and families; and (3) use this pilot research as a platform to develop a larger study, which will investigate the experiences of primary caregivers, teachers, and children with epilepsy and examine their interactions with the school system. It is our intention that this information will be shared with school districts through the development of a school handbook. Background In Canada, epilepsy is found in approximately 3 out of every 1000 children (Bumeo, Prasad, Corbett, & Sang, 2006), and is one of the most frequently diagnosed neurological disorders affecting children (Ettinger et al., 1998). Epilepsy is characterized by repeated seizures, as well as by its effects on the social, behavioural and cognitive development of young children (Lagae, 2008). As such, many young children with epilepsy struggle with learning and social relationships in the school setting (Williams, 2003). These school experiences have been shown to be an important influence on young childrens current and future quality of life (Williams, 2003 as cited in Lewis & Parsons, 2008). Literature on resilience has consistently demonstrated the importance of positive school experiences as a critical protective factor in promoting resilience (Werner, 2006). As such, planning for school transition is critical to young childrens success, and schools must therefore be prepared to meet the of needs young students with epilepsy attending inclusive educational settings. Method A research methodology informed by phenomenology allows us to better understand the quality of life experiences of this studys participants. We are gathering data through in-depth, semi-structured interviews with primary caregivers of young children with epilepsy (junior kindergarten to grade 2). These interviews include open-ended questions pertaining to their quality of life experiences and interactions with the school systems. Through a strong effort by Isa Milman from the Victoria Epilepsy and Parkinson Centre, we have recruited and interviewed nine families to date. The interview process has been both exciting and informative. Although analysis has just begun, common themes across the

interviews are evident. For example, communication between families and schools seems to be of importance, as evident from the following quotations: I had um sent in the first week or two I had sent a you know, sort of an emergency care um letter that I had just typed up myself saying you know this [seizure] is what it looks like, it would be pretty obvious (laughs) but um, and then what to do in case of um a seizure mother Cuz as long as the communications there between you and teacher and the principal and so on and so forth, its its fine, and if Im not around then shell call shell call me - mother Interviews and analysis will continue throughout the summer months.

Relevance to HELPs Mission In the age of inclusive education, where teacher training, individualized programming, and family-centered practice are paramount, it is clear that disease-specific research, as well as research focusing on the perspectives of families, is necessary in order to provide schools with the most useful, applicable information possible. By identifying the perceptions and experiences of the primary caregivers of young children with epilepsy regarding their interactions with the schools, this study will enable a better understanding of how schools can better support, accommodate, and prepare for these children and families, thereby providing these vulnerable young children the protective factors needed to promote resilience throughout their lifespan.

References Bumeo, J. G., Prasad, A. N., Corbett, B., & Sang X. (2006). Prevalence of childhood epilepsy in Canada. Epilepsia, 47, 146. Ettinger, A. B., Weisbrot, D. M., Nolan, E. E., Gadow, K. D., Vitale, S.A., Andriola, M. R., et al. (1998). Symptoms of depression and anxiety in pediatric epilepsy patients. Epilepsia, 39, 595-599. Lagae, L. (2008). Whats new in: Genetics in childhood epilepsy. European Journal of Pediatrics, 167, 715-722. Lewis, A., & Parsons, S. (2008). Understanding of epilepsy by children and young people with epilepsy. European Journal of Special Needs Education, 23(4), 321-335. Werner, E. (2006). What can we learn about resilience from large-scale longitudinal studies? In S. Goldstein & R. B. Brooks. (Eds.), Handbook of resilience in children (pp.17-37). New York, NY: Springer. Williams, J. (2003). Learning and behaviour in children with epilepsy. Epilepsy and Behaviour, 4, 107-111.