Identifying Occupational Issues among Children with Intractable Epilepsy: Individualized versus Norm-Referenced Approaches

Abstract

Background. Anecdotal and empirical evidence indicates children with intractable epilepsy have difficulty completing daily occupations. There is a paucity of literature describing these issues from a client-centred perspective. Occupational issues in childhood epilepsy have historically been assessed by disability inventories. Purpose. This pilot study seeks to determine similarities and differences between occupational issues identified using a disability inventory and an individualized outcome measure among children with intractable epilepsy and their parents. Method. Goal identification was determined using two approaches to standardized measurement with 10 child-caregiver dyads. The Canadian Occupational Performance Measure (COPM) was the individualized measure for both parents and children. The Scales of Independent Behavior-Revised (SIB-R) disability inventory was completed by parents only. Agreement between the top three issues identified by the child COPM, parent COPM, and subscales of the SIB-R were compared. Findings. Although both of the outcomes employed in this study are standardized measures, they resulted in low agreement and the identification of different occupational issues for children with intractable epilepsy. Implications. This study provides a comparison of two different approaches to identifying goals. It also provides preliminary information on the types of occupational performance issues prioritized by children with intractable epilepsy and their parents.