Ongoing Information and Support Needs of Parents of Children with Epilepsy

Mary C. Secco, The University of Western Ontario

Abstract

The purpose of this research is to gain insight into the ongoing information and support needs of parents of children with epilepsy. Using descriptive content analysis of text found in twenty client case files, communication logs, and email correspondence, parents requested information and support provided by a community epilepsy agency to mitigate changes in treatment protocols, challenging child behavior, rushed healthcare provider communication, lack of access to mental health services and barriers encountered in the school system. Parents requested system navigation and school advocacy from community epilepsy agency staff intermediaries to develop rescue medication protocols and to mediate parent-school disputes. Parents requested peer mentors to reduce feelings of uncertainty, worry and social isolation. The findings from this research indicate families would benefit from coordinated care between the clinic and the community to reduce social isolation and to cope with the unpredictability, fear and lifestyle challenges inherent in childhood epilepsy.