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Published on: August 9, 2024
Parents' perceptions of the quality of two intensive training programmes for children with cerebral palsy
Pia Odman1, Barbro Krevers, Birgitta Oberg
1Department of Health and Society, Faculty of Health Sciences, Linköping University, Linköping, Sweden. piaod@ihs.liu.se
Insights
Parents reported high service quality in intensive cerebral palsy (CP) training programs. Achieved expectations, not just functional gains, were key, highlighting the need to address diverse parental needs beyond motor improvements.
Area of Science:
- Rehabilitation Medicine
- Pediatric Neurology
- Health Services Research
Background:
- Cerebral palsy (CP) requires intensive training programs to improve functional outcomes.
- Understanding parental perceptions of service quality is crucial for program effectiveness.
- Previous experiences and expectations significantly influence satisfaction with rehabilitation services.
Purpose of the Study:
- To explore parents' perceptions of service quality in two intensive CP training programs.
- To identify factors associated with perceived service quality and need fulfillment.
- To examine the relationship between achieved expectations and service quality.
Main Methods:
- A cohort of parents (n=50) with children (3-16 years) with spastic, dyskinetic, and ataxic CP participated.
- Functional outcomes were assessed using Gross Motor Function Measure-88 and Pediatric Evaluation of Disability Inventory-Functional Skills pre- and post-training.
- Telephone interviews using the Patient perspective On Care and Rehabilitation process were conducted post-intensive training period (ITP).
Main Results:
- Most parents perceived high service quality in the Lemo and Move&Walk programs.
- Achieved expectations, previous experiences, and perceived functional improvements were linked to need fulfillment.
- Higher severity of disability was associated with decreased need fulfillment and functional improvements.
Conclusions:
- Service quality and achieved expectations, rather than solely functional improvements, significantly influenced parental satisfaction.
- Intensive training programs should acknowledge and address parental needs beyond functional gains.
- Managing expectations and acknowledging diverse needs are vital for optimizing the rehabilitation experience for families of children with CP.
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.
