Parents' perceptions of the quality of two intensive training programmes for children with cerebral palsy

Abstract

This study explored parents' perceptions of the service quality of two intensive training programmes and the association between perceived service quality and predefined influential factors. Parents of 31 males and 19 females with spastic, dyskinetic, and ataxic cerebral palsy (mean age 8y 7mo [SD 3y 7mo]; range 3-16y), and Gross Motor Function Classification System Level I n=1; Level II n=9; Level III n=8; Level IV n=20; and Level V n=12 were included. Functional outcome had been evaluated previously with the clinical measures Gross Motor Function Measure-88, the Pediatric Evaluation of Disability Inventory - Functional Skills, and the Self-reported Individualized Goal Measure, before and after a 4-week intensive training period (ITP). The two training programmes used were Lemo and Move&Walk. After the ITP, a telephone interview was performed with the same cohort, using the Patient perspective On Care and Rehabilitation process. Data on previous experiences, expectations, and severity of disability were collected before the ITP, and data on achieved expectations afterwards. Previous experiences of the training programme, high expectations of improvements, achieved expectations, gross motor capacity improvements, and intensive training at the child and youth rehabilitation centre were associated with increased probability of fulfilment of needs. Severity of disability was associated with decreased probability of fulfilment of needs and functional improvements. Most parents perceived high service quality, and achieved expectations were influenced by high service quality rather than by perceived functional improvements. This suggests that needs other than functional improvements must be explained and acknowledged. © 2007 Blackwell Publishing Ltd.