A family-specific use of the Measure of Processes of Care for Service Providers (MPOC-SP).

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.

Towards integrated paediatric services in the Netherlands: a survey of views and policies on collaboration in the care for children with cerebral palsy.

AIM: Worldwide, family-centred and co-ordinated care are seen as the two most desirable and effective methods of paediatric care delivery. This study outlines current views on how team collaboration comprising professionals in paediatric rehabilitation and special education and the parents of children with disabilities should be organized, and analyses the policies of five paediatric rehabilitation settings associated with the care of 44 children with cerebral palsy (CP) in the Netherlands. METHODS: For an overview of current ideas on collaboration, written statements of professional associations in Dutch paediatric rehabilitation were examined. The policy statements of the five participating settings were derived from their institutional files. Documents detailing the collaborative arrangements involving the various professionals and parents were evaluated at the institutional level and at the child level. Involvement of the stakeholders was analysed based on team conferences. RESULTS: Also in the Netherlands collaboration between rehabilitation and education professionals and parents is endorsed as the key principle in paediatric rehabilitation, with at its core the team conference in which the various priorities and goals are formulated and integrated into a personalized treatment plan. As to their collaborative approaches between rehabilitation centre and school, the five paediatric settings rarely differed, but at the child level approaches varied. Teams were large (averaging 10.5 members), and all three stakeholder groups were represented, but involvement differed per setting, as did the roles and contributions of the individual team members. CONCLUSION: Collaboration between rehabilitation and education professionals and parents is supported and encouraged nationwide. Views on collaboration have been formulated, and general guidelines on family-centred and co-ordinated care are available. Yet, collaborative practices in Dutch paediatric care are still developing. Protocols that carefully delineate the commitments to collaborate and that translate the policies into practical, detailed guidelines are needed, as they are a prerequisite for successful teamwork.

Family-centred care in family-specific teams.

OBJECTIVE: To evaluate the perceptions and views of parents and rehabilitation and special education professionals on the family-centredness of care delivered and received. DESIGN: Descriptive study with comparison of ratings in family-specific teams. SETTING: Five paediatric facilities in the Netherlands. SUBJECTS: Parents of children with cerebral palsy and professionals providing their children's rehabilitation and educational services. MAIN MEASURES: The Dutch Measure of Processes of Care for families (MPOC-NL) and the Measure of Processes of Care for service providers (MPOC-SP). Data were collected and analysed per family. RESULTS: In total 38 MPOC-NLs and 204 MPOC-SPs were returned. The family-specific team analysis of importance ratings yielded significant differences (P < 0.05) on all domains between parents, rehabilitation professionals and special education professionals. For Enabling and partnership (P < 0.01) and Specific information about the child (P < 0.01), parents considered the behaviours to be significantly more important than rehabilitation professionals. The problem-score analyses showed that in all domains a considerable number of parents (19-38%) did not receive the care they deemed important. CONCLUSION: Family-specific analyses of MPOC importance ratings revealed differences in attitudes towards importance of specific care behaviours of team members, which subsequently may have caused the relatively high incidence of parents not receiving the care they deemed important. This underscores the need to explore and attune opinions on what constitutes proper service delivery.

Transparency and tuning of rehabilitation care for children with cerebral palsy: a multiple case study in five children with complex needs.

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.

A review of salient elements defining team collaboration in paediatric rehabilitation.

OBJECTIVE: To explicate the complex process of team collaboration and identify salient elements of team collaboration in paediatric rehabilitation. DATA SOURCES: After an initial search to define key features of team collaboration a systematic search on team collaboration and the key features was executed to identify salient elements. The systematic search was carried out in Index Medicus (MEDLINE), Educational Resource Information Clearinghouse (ERIC) and American Psychological Association (Psyc INFO) covering the period from January 1993 to December 2004. REVIEW METHODS: Based on title and abstract relevant publications were identified and qualitatively assessed by two reviewers. To facilitate the interpretation of the salient elements, the articles were also classified according to the criteria 'participants and setting' and 'research method'. RESULTS: Of the total of 930 identified publications 28 studies proved eligible and were subsequently assessed. The evaluation yielded 29 salient elements defining five key features of team collaboration (i.e. communication, decision making, goal setting, organization and team process). Parent involvement proved to play a dominant role and was mentioned in relation to all five features. CONCLUSIONS: Based on the results, rather than an underlying element, it is proposed to consider parent involvement as the sixth feature of team collaboration. The 29 distinctive elements of teamwork could be useful as a guideline and checklist for empirical studies and may help enhance multidisciplinary collaboration in paediatric care. However, additional exploratory research focusing on the way these elements interact with each other and the key features and whether they facilitate or restrict team collaboration is warranted.

Analysis of handwriting of children during treatment for acute lymphoblastic leukemia.

BACKGROUND: Children treated for acute lymphoblastic leukemia (ALL) often complain about handwriting problems. PROCEDURE: Using a computerized writing task, we have prospectively studied the processes necessary for the production of handwriting movements in 11 children (5-12 years old) during treatment for ALL. Children were tested at time points closely related to the vincristine administration. RESULTS AND CONCLUSIONS: Children treated for ALL drew slower, with longer pause durations and increased drawing pressure. Children were able to overcome the problems, except for a consistently increased drawing pressure. This increased drawing pressure may be an attempt of the children to obtain sufficient kinesthetic information and thus can be seen as an adequate adaptation mechanism in case of peripheral neuropathy due to the neurotoxic effects of vincristine. However, neurotoxic effects of other cytostatic drugs cannot be excluded.

Mild axonal neuropathy of children during treatment for acute lymphoblastic leukaemia.

Neurophysiological functioning was studied prospectively in children treated for acute lymphoblastic leukaemia with a low dose vincristine regime (8 x 1.5 mg/m2/dose), to obtain more insight into vincristine neuropathy. A WHO neurotoxicity score was estimated and vibration sense and electrophysiological measurements were taken at standardized times during vincristine treatment. The WHO neurotoxicity score showed decreased or disappearance of Achilles tendon reflexes, and mild sensory disturbances, but a grade 3-4 neurotoxicity was not demonstrated by any of the children. Vibration perception thresholds increased progressively during treatment and amplitudes of action potentials of peroneal and sensory ulnar and median nerves decreased, whereas nerve conduction velocities stayed unchanged. Both vibration perception thresholds and the electrophysiological findings hardly exceeded the limits of normality. We conclude that children treated for acute lymphoblastic leukaemia with a low dose vincristine regimen have mild axonal neuropathy which may be responsible for the motor problems in these children.

Fine motor and handwriting problems after treatment for childhood acute lymphoblastic leukemia.

Motor skills were investigated in 18 children 2 years after treatment for acute lymphoblastic leukemia (ALL). Gross and fine motor functioning were examined with the Movement Assessment Battery for Children. Handwriting as a specific fine motor skill was studied with a computerized writing task. We conclude that 2 years after cessation of treatment motor problems in ALL survivors were still present. Dysfunctions were mainly pronounced in handwriting and fine motor skills.