title: 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 8 y 7 mo [SD 3 y 7 mo]; range 3-16 y), 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 fulfillment of needs. Severity of disability was associated with decreased probability of fulfillment 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.
authors.affiliation: Department of Health and Society, Faculty of Health Sciences, Linköping University, Linköping, Sweden. piaod@ihs.liu.se
authors.forename: Pia
authors.initials: P
authors.lastname: Odman
authors.forename: Barbro
authors.initials: B
authors.lastname: Krevers
authors.forename: Birgitta
authors.initials: B
authors.lastname: Oberg
mesh_terms: D000203:Activities of Daily Living; D000293:Adolescent; D002547:Cerebral Palsy / Q000534:rehabilitation*; D002648:Child; D002675:Child, Preschool; D015331:Cohort Studies; D004185:Disability Evaluation; D018479:Early Intervention, Educational; D005081:Exercise Therapy / Q000379:methods*; D005260:Female; D006801:Humans; D016015:Logistic Models; D008297:Male; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology; D012720:Severity of Illness Index