Parental empowerment in paediatric rehabilitation: Exploring the role of a digital tool to help parents prepare for consultation with a physician.

BACKGROUND: To explore experiences of parents of children with disabilities using the WWW, roadmap, a tool to support them in exploring needs, finding information, and asking questions of professionals and to explore differences between parents who had used the WWW-roadmap to prepare for consultation with their rehabilitation physician and parents who had not. METHODS: In a sequential cohort study, we included 128 parents; 54 used the WWW-roadmap prior to consultation and 74 received care-as-usual. Both groups completed questionnaires after consultation, assessing empowerment, self-efficacy, parent and physician satisfaction, family centredness of care, and experiences using the tool. Additionally, 13 parents were interviewed. RESULTS: Parents who used the WWW-roadmap looked up more information on the Internet. No other differences between parents and physicians were found. In the interviews, parents said that the WWW-roadmap was a useful tool for looking up information, exploring and asking questions, and maintaining a comprehensive picture. CONCLUSION: Using the WWW-roadmap prior to consultation did not improve self-efficacy, satisfaction, or family centredness of care. Findings suggest positive experiences regarding factors determining empowerment, creating conditions for a more equal parent-physician relationship. The WWW-roadmap is useful for parents to explore their needs and find information, but more is needed to support empowerment in consultations.

Development of social functioning and communication in school-aged (5-9 years) children with cerebral palsy.

The aim of this study was to examine determinants of the course and level of social functioning and communication in school-aged children with cerebral palsy (CP) over a 2-year period. A clinic-based sample of 5 and 7 years old children with CP (n=108; 72 males; mean age 6 y 3 mo, SD 12 mo; Gross Motor Function Classification System (GFMCS) level I-V) was followed longitudinally in three yearly assessments. Social functioning and communication were measured with the Vineland Adaptive Behavior Scales (VABS). Data were analyzed with generalized estimated equations. The results showed that social function followed a course of progressive restrictions over time in non-ambulatory children with CP aged 5-9 compared to children who could walk with or without walking aids. Overall lower levels of social functioning were found in children with GMFCS V, epilepsy, speech problems, lower intellectual capacity and older age at baseline. For communication more restrictions over time were found in children with lower intellectual capacity. Children with GMFCS V, speech problems and older age at baseline had overall greater restrictions in communication. It was concluded that motor functioning and intellectual ability can be used to identify children at risk for progressive restrictions in social functioning and communication. For children with CP and social and communicative restrictions, multidisciplinary assessment and treatment may be indicated to counteract an unfavorable development.

Validation of the Dutch Giving Youth a Voice Questionnaire (GYV-20): a measure of the client-centredness of rehabilitation services from an adolescent perspective.

PURPOSE: The objective was to validate the Dutch translation of the Canadian Giving Youth a Voice Questionnaire (GYV-20) for use in paediatric rehabilitation settings in The Netherlands. The GYV-20 consists of 20 items (assessing four domains) and was designed to evaluate the client-centredness of rehabilitation services from an adolescent perspective. METHOD: The construct validity, concurrent validity, and reliability of the Dutch GYV-20 were determined. Participants were 116 youngsters aged 11 - 21 years (Mean = 15.9; SD = 2.1) recruited through six paediatric rehabilitation settings in The Netherlands. RESULTS: Correlations between the GYV-20 scale scores were positive (r = 0.69 - 0.78). The GYV-20 showed adequate internal consistency, with Cronbach's alpha ranging from 0.76 - 0.81. The ICCs of test-retest reliability ranged from 0.82 - 0.92, which demonstrated good stability of the GYV-20. Dutch adolescents judged the GYV-20 as a valuable and useful tool to evaluate rehabilitation services in The Netherlands. CONCLUSIONS: The Dutch GYV-20 showed sufficient evidence of construct validity and good reliabilities. The Dutch GYV-20 offers users a useful measurement option for various research and clinical purposes.

Quality of paediatric rehabilitation from the parent perspective: validation of the short Measure of Processes of Care (MPOC-20) in the Netherlands.

OBJECTIVE: In the present study we aim to assess the reliability and validity of the 20-item version of the Dutch Measure of Processes of Care (MPOC). DESIGN: The reliability, concurrent validity, predictive validity and construct validity of the Dutch MPOC-20 were determined. A subset of MPOC-20 data was extracted from a large Dutch MPOC (56-item version) database. SUBJECTS: Participants were 405 mothers and 22 fathers of children aged 1-18 years recruited through nine paediatric rehabilitation centres in the Netherlands. MAIN MEASURES: The participants filled out the MPOC-20 items, the Client Satisfaction Questionnaire (CSQ), and two additional questions about satisfaction with services and the amount of stress they experienced. RESULTS: The internal consistency analyses (alphas 0.75-0.87) and the test-retest analyses (intraclass correlation coefficients (ICCs) 0.78-0.91) showed that the Dutch MPOC-20 is a reliable tool. The concurrent validity of the Dutch MPOC-20 was confirmed by positive correlations between MPOC-20 scale scores and the CSQ (r 0.39-0.69), and between MPOC-20 scale scores and an overall satisfaction variable (r 0.37-0.66). The predictive validity of the Dutch MPOC-20 was supported by moderately negative correlations between MPOC-20 scores and a stress variable (r -0.27 to -0.44). The construct validity of the Dutch MPOC-20 was confirmed by significant scale intercorrelations (r 0.41-0.84) and a factor analysis. CONCLUSIONS: The 20-item version of the MPOC (Dutch MPOC-20) is a reliable and valid measure of the family-centredness of paediatric rehabilitation.

Family-centred services in The Netherlands: validating a self-report measure for paediatric service providers.

OBJECTIVE: To validate the Dutch translation of the Canadian Measure of Processes of Care for Service Providers questionnaire (MPOC-SP) for use in paediatric rehabilitation settings in the Netherlands. DESIGN: The construct validity, content validity, face validity, and reliability of the Dutch MPOC-SP were determined. SUBJECTS: The 163 service providers that participated in the validation study represented seven children's rehabilitation centres and affiliated schools in the Netherlands (overall response rate 55.6%). In this sample 19 disciplines were represented. MAIN MEASURES: The MPOC-SP consists of 27 items (assessing four domains) and was designed to examine how service providers think about the quality of care they provide and to assess the extent to which these services are family centred. Fifty-three service providers filled out an additional face validity questionnaire. RESULTS: All items correlated best and significantly with their own scale score (r(s) 0.48-0.82, P<0.001). The Pearson's correlation coefficients were all significant and confirmed that the four scales measure different aspects of a same construct, namely family-centred service. The content validity and the face validity of the Dutch MPOC-SP were good, indicating the questionnaire measures relevant aspects of family-centred service delivery in paediatric rehabilitation settings in the Netherlands. The test-retest analyses (intraclass correlation coefficient (ICC) 0.83-0.89) and the internal consistency analyses (alpha 0.65-0.84) showed that the Dutch MPOC-SP is a reliable tool. CONCLUSIONS: The Dutch MPOC-SP is a reliable and valid instrument to measure the family-centredness of service delivery.

Qualitative analysis of therapeutic motor intervention programmes for children with cerebral palsy: an update.

This study presents a comprehensive evaluation of therapeutic motor interventions for children with or at risk for cerebral palsy (CP), examining 50 studies covering the period from 1990 to 2001. The purpose was to review noticeable changes in the scientific quality of the studies and to highlight trends and changes in the nature of the evaluated programmes. Our results were compared with those of Vermeer and Bakx (1990) who reviewed the period from 1980 to 1989. It was concluded that fundamental research with adequate methodology was applied more often in the study period than in the period reviewed by Vermeer and Bakx. However, these developments did not lead to a substantial improvement in the scientific foundation of the interventions under study. Single case studies, combined with efforts to develop measures specifically for children with CP and with high sensitivity, might make more valuable contributions to the scientific justification of therapeutic interventions.