Co-development of the CMAP Book: a tool to enhance children's participation in pediatric rehabilitation.

PURPOSE: The purpose of the co-development project was to create a tool that enhances children's active participation and agency in rehabilitation and in everyday life. MATERIALS AND METHODS: Action research was the methodological approach. Participants in the different phases of the process (2015-2017) were children with disabilities, parents and rehabilitation professionals. The co-development process included: (1) designing the tool's first version, (2) piloting the tool, (3) evaluating the tool by collecting feedback and reflection, (4) generating the tool's final version. RESULTS: Through the co-development process, an accommodating and digital tool called the CMAP Book-a description of the child's meaningful activities and participation-was developed. The CMAP Book is used with an electronic app enabling the identification and description of what is meaningful in daily life from the child's perspective with videos, photos, pictures, recording and writing. The tool enables the child, family and professionals to prepare and build collaboration in rehabilitation with flexibility according to child and family needs. CONCLUSIONS: Use of the CMAP Book promotes the active involvement of the child and parents in designing the rehabilitation process in daily life in partnership with professionals. The stakeholder involvement in the co-development facilitated meaningful results and a concrete tool for rehabilitation.IMPLICATIONS FOR REHABILITATIONThe CMAP book is a new tool that enhances the child's active participation and agency in the rehabilitation process based on meaningful activities in everyday life expressed by the child.Identifying and utilising meaningful issues in the child's daily life through collaboration increases the child's commitment and motivation, and thus may enhance the benefits and effects of rehabilitation. Through co-development, the child and his/her family can be active and equal partners not only in development projects but also in the rehabilitation process.In the future, child-specific practices and policies should be developed to promote participatory co-research between families and clinicians linked to the daily lives of families with children.

Two sides of the mirror: parents' and service providers' view on the family-centredness of care for children with cerebral palsy.

BACKGROUND: In order to best meet the needs of both families and their children with cerebral palsy, many rehabilitation service providers have adopted a family-centred service (FCS) approach. In FCS parents are seen as experts on their child's needs, and the family and professionals collaborate in the rehabilitation process. However, parents and service providers might look at FCS from different points of view, i.e. look into the mirror from two different sides. The objective of this study was to explore the degree to which parents experience the service as being family-centred and to which extent the service providers experience their service provision as family-centred. METHODS: A translated version of The Measure of Processes of Care 20 (MPOC-20) questionnaire was used to evaluate parents' experience of FCS, and a Measures of Processes of Care for Service Providers (MPOC-SP) questionnaire was used to evaluate the FCS provided by professionals. Parents visiting two university hospital neuropediatric wards (n= 67) during a 2-month period and who were willing to participate received the questionnaire. Also the service providers working on the same wards (n= 49) were invited to participate. RESULTS: A total of 53 families and 29 service providers completed the questionnaires. Both parents and professionals generally rated the FCS positively. General information was rated lowest and respectful treatment the highest by both parents and professionals. The results revealed that written information about the child's condition, the possibility to choose when to receive information, and contact with other families in the same situation are areas in need of improvement. CONCLUSIONS: The possibility to regularly evaluate services both from the families' and the professionals' perspectives should be part of quality development. Providing general information is a challenge for all service providers. The MPOC questionnaires can be used to highlight important areas of improvement in FCS.

Professional background and the comprehension of family-centredness of rehabilitation for children with cerebral palsy.

BACKGROUND: Children with cerebral palsy have difficulties in several areas of functioning, and they need long-lasting rehabilitation with a clear focus on the individual's needs. Finnish guidelines emphasize family-centred service. The values of family-centred service are widely known, but how the principles of family-centred service are adopted in clinical practice is not well documented. The objective of this study was to analyse the family-centred behaviour of professionals working with children and adolescents with cerebral palsy. METHODS: A translated version of the Measure of Processes of Care for Service Providers (MPOC-SP) questionnaire was used to evaluate the family-centred service. The questionnaire was sent to all the professionals in the multidisciplinary rehabilitation teams at all the hospitals and governmental special schools treating children and adolescents with cerebral palsy in Finland (n= 327). Furthermore, 438 physiotherapy service providers working in the children's home region were invited to participate. RESULTS: A total of 201 multidisciplinary team members and 311 physiotherapy service providers completed the questionnaire. Both the team members and the service providers generally rated their family-centred behaviour positively. There was statistically significant difference in how the team members in the multidisciplinary teams self-assessed their family-centred service. Physiotherapists working in multidisciplinary teams rated their family-centred service higher than physiotherapy service providers. The professional's apprehension of family-centred service increased with work experience. CONCLUSIONS: Professional background and professional context seem to affect the apprehension of family-centred service. Also work experience and being part of a multidisciplinary team have an influence on how the professionals embrace the family-centred service delivered. The MPOC-SP can be used to identify areas for improvement.

Evidence on physiotherapeutic interventions for adults with cerebral palsy is sparse. A systematic review.

OBJECTIVES: To identify evidence evaluating the effectiveness of physiotherapy in adolescents (>16 years of age) and adults with cerebral palsy. DATA SOURCES: Systematic literature search from the earliest available time until March 2009. Additional studies were identified through reference and citation tracking. REVIEW METHODS: Two reviewers independently agreed on eligibility, methodological quality and quality of evidence assessment. Standard methods were used for quality assessments. RESULTS: Included were 13 studies, two of which were randomized controlled trials. No article met the criteria for high methodological quality. Evidence of moderate quality was found on gait after strength training. Evidence of low quality was found on balance after strength training and workstation interventions. Low-quality evidence was also found on functionality after strength training in four studies evaluating gross motor capacity. There was very low-quality evidence on increased muscle strength and in outcome measures used to evaluate range of motion. CONCLUSION: Evidence for the effect of physiotherapy on adolescents and adults with cerebral palsy is sparse, and therefore there is an urgent need for well-designed physiotherapeutic trials for these people.