Family‐centred outcome measurement following paediatric stroke

Abstract

Therapy programmes aim to provide services that are family-centred and address the specific needs of children. The Canadian Occupational Performance Measure (COPM) and the Perceived Efficacy and Goal Setting system (PEGS) are two measures that are available to assist in determining therapy priorities for children and their parents; however, the use of these measures has not been documented for children who have sustained a stroke. This project aimed to describe the functional concerns identified by children and their parents following paediatric stroke. A cross-sectional design was used. A total of 26 children were recruited from a paediatric stroke outpatient clinic, and functional concerns were identified using either the COPM or the PEGS. Children and their parents identified similar issues. Of the 26 participants, 23 (88.5%) reported ongoing functional concerns at three months or more following stroke, whereas three participants did not identify any ongoing functional concerns. Functional concerns were grouped into categories of self-care, productivity and leisure as outlined in the Canadian Model of Occupational Performance. Concerns were identified across all functional domains by both children and their parents. The COPM and PEGS provided useful information about functional issues that are important to children and their parents following paediatric stroke. Use of these client-centred measures provides an opportunity to better understand the impact of paediatric stroke on children's functional abilities, and allows greater scope for service provision and planning for this group of children.