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.

SummaryBackgroundA family‐centred approach to services of children with disabilities is widely accepted as the foundational approach to service delivery in paediatric health care. The 56 items of the Measure of Processes of Care questionnaire (MPOC‐56) all reflect elements of family‐centred service. In this study, we investigated which elements of family‐centred service are rated important by parents of children with cerebral palsy by adding a question on importance to each item of the MPOC‐56 (MPOC‐56‐I).MethodsIn total, 175 parents of children with cerebral palsy completed the MPOC‐56‐I. For each MPOC item, parents were asked to rate the importance on a 5‐point scale ranging from 0 (not important at all) up to and including 4 (very important). We used Spearman's rank correlation coefficient to further explore the variation in parents' importance ratings.ResultsParents' importance ratings of the MPOC‐56 items varied. The percentage of parents rating an item important (importance rating 3 or 4) varied between 43.8% and 96.8%. The percentage of parents rating an item unimportant (rating 0 or 1) varied between 0.0% and 20.3%, and the percentage of parents rating an item neutral (rating 2) varied between 3.0% and 36.0%. Most diverse importance ratings were found for five items concerning the provision of general information. Three correlations between these items and child and parent characteristics were found. Six items were rated important by almost all (≥95%) parents. These items concern elements of specific information about the child, co‐ordinated and comprehensive care for child and family and enabling and partnership.ConclusionsParents rate the importance of family‐centred services for their situation in various ways. These findings endorse that family‐centred services should recognize the uniqueness of families and should be tailored to what parents find important.

Improving functioning of children with disabilities is the main focus of paediatric rehabilitation services. This functioning is determined by a complex interaction between the health condition and contextual factors as described in the ICF-model. The most important contextual factor for young children is the family. The functioning of the child is widely influenced by the functioning of the family, and vice versa. Therefore, family-centered services are increasingly being promoted. In order to be able to shift focus from child-centered towards family centred services, it is important that parents are empowered to be involved in the healthcare process. In order to be involved and participate in healthcare and decision-making, parents need information, skills and opportunities. There is much variation in parental preferences and experiences considering the care for their children. Moreover, parents and families show large differences in their family needs, and these needs change in time. Concrete assessment of family needs and the way these needs are addressed is needed, especially in times of transition, where there are changes in care needs and preferences. Besides medical information, experience-based knowledge is deemed very important by parents. Parents search for information on the Internet, and compare information from different sources. This knowledge is used by the parents to take control of their situation. Both medical and experience-based knowledge help enable parents to play a role in decision-making and thus in the process oftheir empowerment. In an extensive literature review and by interviewing parents and professionals, we mapped possible family needs of families of children with disabilities. This resulted in a list of 189 unique family needs. Many needs were information-needs on a wide range of topics. In order to help parents explore their needs, find information and consult the appropriate professional, in close collaboration with parents we designed a digital tool called the WWW-roadmap. We proposed that using this tool for preparing the consultation with the rehabilitation physician could help parents in the process of empowerment. In a sequential-cohort study we explored differences between 74 parents who used the tool prior to the consultation with the physician and 54 parents who did not. We found no differences in parental empowerment, patient and physician satisfaction, self-efficacy and perceived family-centredness of care. However, qualitative analyses showed that using the tool helped parents in finding information, the feeling of being better able to formulate questions, awareness of the possible roles in the consultation and maintaining a comprehensive picture of their situation and family needs. The WWW-roadmap can be useful for parents to identify their needs and to search for information. This can provide parents with an opportunity to meet their information needs themselves. They then may be more easily inclined to discuss these questions and needs with the professionals. However, as ‘it takes two to tango’, it is not only the parents who should be supported, but professionals should also be trained and supported to become sufficiently aware of parental and family needs and specifically ask about them, bringing family-centred care one step closer to realisation.

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.

BACKGROUND Valid tools to assess family needs for children with physical disabilities are needed to help tune paediatric rehabilitation care processes to individual needs of these families. To create such a family needs inventory, needs of families of children with a physical disability (age 0-18 years) were identified. We examined differences in the number and type of needs listed by families when asked for by means of an interview compared with using an inventory. METHODS Forty-nine families of children with a wide variety of physical disabilities (mean age 7.7 years; SD 4.6) participated in semi-structured interviews, focusing on family needs. They also checked an inventory of 99 items (based on a previously conducted literature review), regarding their family needs. In addition, individual interviews with healthcare professionals, and panel meetings with healthcare professionals and parents were held to further identify relevant family needs for the inventory. RESULTS The individual parent and healthcare professional interviews raised 41 needs that were not included in the original inventory of 99 items. Moreover, the panel meetings raised a further 49 needs. After restructuring and reformulating several items, a 187-item Family Needs Inventory - Paediatric Rehabilitation (FNI-PR) was created. The parent interviews revealed significantly less family needs (mean number of needs = 10.8; SD = 6.0) compared with using the inventory (mean number of needs = 31.7; SD = 19.7) (P < 0.0001). Most expressed family needs were related to both general and specific information concerning the child's development and treatment, aids and information about legislation and to rules relating to compensation of costs. CONCLUSION Based on responses of parents and healthcare professionals the FNI-PR has been developed, a comprehensive inventory for family needs that can be used in paediatric rehabilitation. An inventory checked by parents resulted in more family needs than a single open-ended question. The inventory may facilitate the implementation of family-centred care.

Families of children with a physical disability experience a large variety of needs over and above those of families with typically developing children. This study reports the results of a review of the published literature on family needs. A systematic search was conducted in the ERIC, PsycINFO, and PubMed databases from their date of release until December 2011. In addition, reference lists of the assembled articles were examined for relevant literature. Articles were evaluated on study characteristics and family needs; 1823 unique abstracts were screened for eligibility, revealing 69 potentially relevant articles, of which 64 could be retrieved. Analyses of a final selection of 29 articles resulted in a list of 604 family needs (range of 1−36 needs per article), which were clustered and rephrased into 99 unique needs and organized into 14 domains. The results of the review emphasize the variety of needs that these families experience, with "information needs" taking an important place. Our findings may serve as a resource for researchers who are working to develop valid tools to assess needs of families with children with disabilities, and such a tool can be instrumental in tuning the care processes to the individual needs of these families.

Purpose. This study provides information on the psychometric properties of a newly developed Dutch-language instrument for measuring parental perceptions of participation of preschool children (aged 2+ to 5+ years): the PART.Method. The PART was administered to parents of preschool children with (n = 51) and without (n = 285) physical developmental disabilities. In the group with disabilities, children with no or relatively minor mobility limitations (capability scores in mobility domain higher than one standard deviation below population mean) were excluded from all analyses. A subgroup of parents of children without disabilities (n - 56) filled out the PART a second time, after a five-week interval. Hypotheses regarding group differences in PART scores and correlations of PART scores with different, but related ICF-constructs were tested. Test-retest reliability of the PART scales was examined.Results. Expectations about group differences were confirmed. PART scores were associated in predicted ways with related constructs. PART scales showed good test-retest reliability (ICCs from 0.76 to 0.87).Conclusions. These findings indicate that the Dutch-language PART is a reliable and valid instrument for measuring parental perceptions of participation of preschool children with and without mobility limitations. The PART can prove useful for both clinical and research purposes.

Objective: To examine the validity and utility of the Dutch Measure of Processes of Care for Service Providers (MPOC-SP) as a family-specific measure. Design: A validation study. Setting: Five paediatric rehabilitation settings in the Netherlands. Main measures: The MPOC-SP was utilized in a general (reflecting on services provided for all clients and clients' families) and family-specific way (filled out in reference to a particular child and his or her family). Subjects: Professionals providing rehabilitation and educational services to children with cerebral palsy. Methods: For construct validity, Pearson's product-moment correlation coefficients (r ) between the scales were calculated. The ability of service providers to discriminate between general and family-specific ratings was examined by exploration of absolute difference scores. Results: One hundred and sixteen service professionals filled out 240 family-specific MPOC-SPs. In addition, a subgroup of 81 professionals filled out a general MPOC-SP. For each professional, family-specific and general scores were paired, resulting in 151 general—family-specific MPOC-SP pairs. The construct validity analyses confirmed the scale structure: 21 items (77.8%) loaded highest in the original MPOC-SP factors, and all items correlated best and significantly with their own scale score (r 0.565 to 0.897; P<0.001). Intercorrelations between the scales ranged from r = 0.159 to r = 0.522. In total, 94.4% of the mean absolute difference scores between general and family-specific scale scores were larger than the expected difference. Conclusion: Service providers were able to discriminate between general and family-specific MPOC-SP item ratings. The family-specific MPOC-SP is a valid measure that can be used for individual evaluation of family-centred services and can be the impetus for family-related quality improvement.

BACKGROUND:The Measure of Processes of Care (MPOC) is a 56-item self-administered measure designed to examine what parents of a child with a chronic health problem think of the services they and their child receive, and to measure the extent to which these services are family-centred. Reliability and validity of the MPOC were established in prior studies. The aim of the present study was to assess the 1-year stability of the MPOC to justify its use as an evaluative tool.METHODS:Nine paediatric rehabilitation centres in the Netherlands participated in this short longitudinal survey study. Subjects were 205 parents (response rate 74.8%) of children aged 1-18 years who received care in one of the participating paediatric rehabilitation centres. All subjects filled out two MPOCs with a 1-year interval.RESULTS:All correlations between the scale scores of the MPOC at the first and second administration were relatively high and significant (range: 0.443-0.609, all P < 0.001), demonstrating high inter-individual stability. However, all mean scale scores, except for Providing General Information, significantly reduced after 1 year.CONCLUSIONS:The MPOC has a moderate 1-year stability. However, because of its tendency to score lower when repeated after 1 year, its use as an evaluative follow-up instrument to assess the effectiveness of a programme intervention is restricted.

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 α 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.

PURPOSE:Generally, there is a lack of knowledge whether and how parent-identified problems, treatment goals and treatment activities are tuned in the treatment of children with cerebral palsy. This study aimed to observe whether parent-identified problems and treatment goals were documented ('transparency' of the rehabilitation process), and to examine the relationship ('tuning') of parent-identified problems to treatment goals and to treatment activities of children with cerebral palsy in pediatric rehabilitation in the Netherlands.METHOD:Five school-aged subjects with cerebral palsy were observed in detail during physical, occupational, and speech therapy, and their written reports were studied. Parent-identified problems, treatment goals, and treatment activities were linked to the ICF components, domains and categories and the amount of agreement was determined by code comparison.RESULTS:Only two children with a total of six parent-identified problems could be documented. Forty-five treatment goals were identified and 72 treatment activities were observed. The analyses indicated some tuning of parent-identified problems, goals and activities in all subjects, but only four of the treatment activities were perfectly tuned to treatment goals as well as to parent-identified problems.CONCLUSIONS:We conclude that transparency and tuning of the pediatric treatment process described in the present study could be improved substantially. Several suggestions for improving the transparency and tuning of the treatment process are discussed.

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.

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.

Aim The importance of family-centred care and services has been increasingly emphasized in paediatric rehabilitation. One aspect of family-centred care is parent involvement in their child's treatment. The aims of this study were (1) to describe how, and to what extent parents are involved in the paediatric rehabilitation treatment process in the Netherlands; (2) to determine the level of parents' satisfaction about the services they and their child have received; and (3) to describe what ideas parents have to enhance their involvement in the treatment process.Methods A total of 679 parents of children aged 1-20 years who participated in our longitudinal study on family centred care in the Netherlands. The children had various diagnoses and were treated in nine out of 23 Dutch paediatric rehabilitation centres. A random sample of 75 parents was interviewed within 4 weeks after completion of the Measure of Processes of Care and the Client Satisfaction Questionnaire. A Quality of Care cycle with six stages was used to structure the evaluation.Results The data showed that parents are involved in all stages of their child's rehabilitation process in various ways. The average level of parent satisfaction about the services received was high. According to the interviewed parents, the communication between professionals and parents, parents' involvement in goal setting, and parents' involvement in treatment could be improved upon.Conclusion Parents are to a large extent involved in all stages of the treatment process in Dutch paediatric rehabilitation settings. Although parents valued the services received, they suggested various ways to enhance parent participation.

AIM The objective was to validate the Dutch translation of the Canadian measure of processes of care (MPOC) questionnaire for use in children's rehabilitation centres in the Netherlands. MPOC consists of 56 items (assessing five domains) and was designed to find out what parents of children with chronic health problems think of the services they and their child receive and to measure the extent to which these services are family-centred. METHODS The Canadian validation procedures were followed, consisting of construct and concurrent validation and reliability analyses. Participants were parents of 427 children aged 1-18 years recruited through nine children's rehabilitation centres in the Netherlands. RESULTS The construct validity of the Dutch version of MPOC (MPOC-NL) was examined with confirmative analyses of the scale structure. These analyses all supported the construct validity of MPOC-NL. MPOC-NL showed adequate internal consistency, with Cronbach's alpha ranging from 0.80 to 0.95. The intraclass correlation coefficients (ICCs) ranged from 0.79 to 0.94, which demonstrated good stability of MPOC-NL. The Spearman correlations between MPOC-NL scores and satisfaction questions ranged from 0.39 to 0.73, and thus supported the construct validity of MPOC-NL. Correlations between MPOC-NL scores and a question about parents' stress in relation to services received were moderately negative (r(s) = -0.28 to -0.39). CONCLUSION The construct and concurrent validity of MPOC-NL was shown by confirmative analyses of the original Canadian scale structure, and by modest Spearman correlations between MPOC-NL scores and satisfaction and stress variables. MPOC-NL is internally consistent and reliable.

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.