Review Psychosocial issues for children with epilepsy Roos Rodenburg a, b , Janelle L. Wagner c, d , Joan K. Austin g, 1 , Michael Kerr e , David W. Dunn f, a Research Institute of Child Development and Education, University of Amsterdam, Amsterdam, The Netherlands b SEIN-Epilepsy Institute in the Netherlands Foundation (SEIN), Heemstede, The Netherlands c Departments of Nursing and Pediatrics, Medical University of South Carolina, Charleston, SC, USA d Comprehensive Epilepsy Center, Medical University of South Carolina, Charleston, SC, USA e Welsh Centre for Learning Disabilities, School of Medicine, Cardiff University, Cardiff, UK f Departments of Psychiatry and Neurology, Indiana University School of Medicine, Indianapolis, IN, USA g Department of Environments for Health, Indiana University School of Medicine, Indianapolis, IN, USA abstract article info Article history: Received 20 April 2011 Accepted 21 April 2011 Available online 25 June 2011 Keywords: Childhood epilepsy Psychosocial problems Family problems in epilepsy Academic difculties and epilepsy Emerging adulthood and epilepsy Epilepsy is a pervasive disorder that consists not only of seizures, but of behavioral, academic, and social difculties. Epilepsy has an impact on the entire family and may have a signicant effect on the interrelationships between child and parent. Epilepsy also has a potentially deleterious effect on academic functioning that may be the result of central nervous system dysfunction, seizures, antiepileptic drugs, or child and family response to illness. Early assessment for psychosocial problems and appropriate interventions can be benecial for the child and family. Particular attention should be paid to periods of transition such as the move from adolescence to adulthood. © 2011 Elsevier Inc. All rights reserved. 1. Introduction Epilepsy in children is more than recurrent seizures and anti- epileptic drugs. Epilepsy may have a direct effect on the behavior and cognition of a child, but understanding the response of the child requires an awareness of the effects of epilepsy on the family and surrounding community. In the next three sections, we review current research and future directions for assessment and treatment of the psychosocial problems of children with epilepsy. We begin with reviews of the psychosocial issues for the child within the family (Section 2) and the child in the academic setting (Section 3). This is followed by an examination of the important issue of transition from childhood into adolescence and emerging adulthood, including both risk factors and interventions that will determine a successful outcome for children with epilepsy (Section 4). The fourth and fth sections highlight the current work of two young investigators. Dr. Rodenburg discusses the bidirectional association of changes in the behavior of the child with the relationships in the family and the response of the parent to the challenge of epilepsy that helps to shape the emotional and cognitive outcome of the child. Dr. Wagner presents initial data on attempts to intervene by teaching the child and parents management techniques to limit adverse effects of epilepsy. 2. Family environment and parenting 2.1. Joan K. Austin The family environment has been found to be important in the psychological development of children with a chronic illness. Children with epilepsy also have behavior problems at rates higher than those in children with other chronic conditions [1]. Children with epilepsy are especially at risk for behavioral disorders related to attention and internalizing behaviors, such as anxiety and depression symptoms. Among the risk and protective factors associated with these problems are those related to the family environment and parenting. Findings from studies investigating both seizure and family variables as predictors of child behavior commonly show that family variables are the more strongly associated [2]. Research on the nature of the relationship of the family environment and parenting with child behavior problems, however, is still in its early stages and many issues remain to be studied. We propose that the issues surrounding the complex interrela- tionship of family and parenting factors with child behavioral outcomes currently shape some of the most important clinical research questions in our eld. We identied three broad areas for discussion: (1) identifying the impact of epilepsy on the family and parenting; (2) delineating the interrelationship of family variables Epilepsy & Behavior 22 (2011) 4754 From a special issue of Epilepsy & Behavior: "The Future of Clinical Epilepsy Research" in which articles synthesize reviews from senior investigators with the contributions and research directions of promising young investigators. Corresponding author at: Departments of Psychiatry and Neurology, Indiana University School of Medicine, 702 Barnhill Drive, ROC 4300, Indianapolis IN 46202 USA. Fax: +1 317 948 0609. E-mail address: ddunn@iupui.edu (D.W. Dunn). 1 Distinguished Professor Emerita, Indiana University School of Nursing. 1525-5050/$ see front matter © 2011 Elsevier Inc. All rights reserved. doi:10.1016/j.yebeh.2011.04.063 Contents lists available at ScienceDirect Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh