M. Ketelaar

Cross-cultural validation and psychometric evaluation of the Dutch language version of the Children’s Assessment of Participation and Enjoyment (CAPE) in children with and without physical disabilities

Objective: To assess construct validity, test—retest reliability and inter-interviewer reliability of the intensity dimension of the Children’s Assessment of Participation and Enjoyment (CAPE) for children with and without physical disabilities in the Netherlands. Subjects: In total, 232 children aged 6—18 years (110 male, 122 female) participated. Seventy-four children with various physical disabilities and 158 without a disability. Design: Participants completed the CAPE and the Peabody Picture Vocabulary Test. In addition, parents of 142 children were interviewed using the Vineland Adaptive Behavior Scales and the Family Environment Scale. For 71 children test— retest reliability and for 60 children inter-interviewer reliability were assessed. Validity was examined by assessing differences in participation intensity in children with disabilities versus without a physical disability, boys versus girls, and younger versus older children. In addition, 13 hypotheses regarding participation, child and family variables were examined. Results: Validity of the CAPE was supported by significant differences in participation for subgroups. Participation differed significantly in children with and without disabilities. Girls participated more in all activities. Older children participated more in social activities and self-improvement activities, younger children participated more in recreational activities. Validity of the CAPE was further supported with significant correlation coefficients in 8 out of 13 hypotheses. Both test—retest and inter-interviewer reliability were good to excellent. Conclusions: The findings indicate that the Dutch language version of the CAPE is a reliable and valid instrument to measure participation in recreation and leisure activities for children with and without physical disabilities aged 6—18 years.

Parents' reactions to the diagnosis of cerebral palsy: associations between resolution, age and severity of disability

BACKGROUND For parents, receiving a diagnosis, typically in early childhood, that their child has cerebral palsy may conjure up high distress and anxiety. Resolution of these initial reactions may help parents to focus on the challenges and needs of their children. AIMS of the study were to test whether parents of older children displayed resolution more often than parents of younger children, and whether parents of children with less severe cerebral palsy also showed more resolution. METHOD Resolution of reactions to diagnosis was assessed with the Reaction to Diagnosis Interview, in a clinic-based sample of 255 parents of children with cerebral palsy aged between 1.4 and 17.3 years. Physicians rated motor ability using the Gross Motor Function Classification System. RESULTS Overall, the responses of 81.6% of the parents were predominantly indicative of resolution. Unresolved reactions were significantly more often found among parents of younger children and parents of children with more severe motor disabilities. Among parents of teenage children, resolution was more often apparent from a focus on action to better the lives of their children, whereas in parents of younger children, it was more apparent from their focus on constructive thoughts and information seeking. CONCLUSIONS Given time, the large majority of parents may resolve their reactions to the diagnosis that their child has cerebral palsy. Parents of the most severely affected children may need specific support which, given the age trends, might be aimed at different resolution processes for parents of younger and older children.

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.

Development of non-verbal intellectual capacity in school-age children with cerebral palsy

BACKGROUND Children with cerebral palsy (CP) are at greater risk for a limited intellectual development than typically developing children. Little information is available which children with CP are most at risk. This study aimed to describe the development of non-verbal intellectual capacity of school-age children with CP and to examine the association between the development of non-verbal intellectual capacity and the severity of CP. METHODS A longitudinal analysis in a cohort study was performed with a clinic-based sample of children with CP. Forty-two children were assessed at 5, 6 and 7 years of age, and 49 children were assessed at 7, 8 and 9 years of age. Non-verbal intellectual capacity was assessed by Ravens Coloured Progressive Matrices (RCPM). Severity of CP was classified by the Gross Motor Function Classification System, type of motor impairment and limb distribution. manova for repeated measurements was used to analyse time effects and time × group effects on both RCPM raw scores and RCPM intelligence quotient scores. RESULTS The development of non-verbal intellectual capacity was characterised by a statistically significant increase in RCPM raw scores but no significant change in RCPM intelligence quotient scores. The development of RCPM raw scores was significantly associated with the severity of CP. Children with higher levels of gross motor functioning and children with spastic CP showed greater increase in raw scores than children with lower levels of gross motor functioning and children with dyskinetic CP. CONCLUSIONS Children with CP aged between 5 and 9 years show different developmental trajectories for non-verbal intellectual capacity, which are associated with the severity of CP. The development of non-verbal intellectual capacity in children with less severe CP seems to resemble that of typically developing children, while children with more severe CP show a limited intellectual development compared to typically developing children.

Parental perceptions of participation of preschool children with and without mobility limitations : validity and reliability of the PART

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.

Do children participate in the activities they prefer? A comparison of children and youth with and without physical disabilities

Objective: To assess the discrepancy between the leisure activities children prefer and the leisure activities they actually participate in, for children with and without a physical disability, and to explore how in both groups this is related to age and gender. Design: Cross-sectional comparison. Subjects: Children with and without physical disabilities that were recruited from schools for special education and regular schools in the Netherlands. Main measures: The Children’s Assessment of Participation and Enjoyment (CAPE) and the Preferences for Activities of Children (PAC). A discrepancy score was calculated representing high preference but no participation in the activity in the past four months. Results: A total of 141 children (6–18 years) with a physical disability (mean age 12.5, 43% girls, 57% boys) and 156 children without physical disabilities (mean age 11.5, 55% girls,45% boys) were included in the study. There was no significant difference in discrepancy scores between children with and without physical disabilities (informal activities 9.8 ± 5.0 vs. 9.8 ± 4.6, formal activities 6.4 ± 3.4 vs. 6.6 ± 2.8). Discrepancy between preference and performance varied by age and gender for children without disabilities but not for children with disabilities. Conclusions: Both groups are equally able to participate in the activities they prefer. Age and gender had a significant effect on the discrepancy scores for children and adolescents without physical disabilities but not for children with physical disabilities.

LEARN2MOVE2-3: A randomized controlled trial on the efficacy of child-focused intervention and context-focused intervention in preschool children with cerebral palsy.

Abstract From the Dutch Society for Pediatric Physical TherapyFrom the Dutch Society for Pediatric Physical Therapy LEARN 2 MOVE 2-3: A RANDOMIZED CONTROLLED TRIAL ON THE EFFICACY OF CHILD-FOCUSED INTERVENTION AND CONTEXT-FOCUSED INTERVENTION IN PRESCHOOL CHILDREN WITH CEREBRAL PALSY LEARN 2 MOVE 2-3 project group: Anne J. A. Kruijsen-Terpstra, MSc, PT1, Marjolijn Ketelaar, PhD1, Olaf Verschuren, PhD, PT1, Jan Willem Gorter, MD, PhD2, Johannes Verheijden3, Marian J. Jongmans, PhD4,5, Anne Visser-Meily, MD, PhD1 Group Members Affiliations: 1Brain Center Rudolf Magnus and Center of Excellence for Rehabilitation Medicine (Ms KruijsenTerpstra and Drs Ketelaar, Verschuren and Visser-Meily), University Medical Center Utrecht and De Hoogstraat Rehabilitation, Utrecht, the Netherlands; 2CanChild Centre for Childhood Disability Research (Dr Gorter), McMaster University, Hamilton, Ontario, Canada; 3BOSK, Association of People with a Physical Disability (Mr Verheijden), Utrecht, the Netherlands; 4Department of Child, Family & Education Studies (Dr Jongmans), Faculty of Social and Behavioural Sciences, Utrecht University, Utrecht, the Netherlands; 5Department of Neonatology (Dr Jongmans), Wilhelmina Children’s Hospital, University Medical Center Utrecht, Utrecht, the Netherlands. Children with cerebral palsy (CP) face limitations in their daily activities, in particular regarding mobility and self-care. To improve their daily functioning, preschool children with CP often receive physical and/or occupational therapy. Although many treatment ideas and approaches are available, evidence to show which intervention is the most effective for preschool children with CP is lacking. Furthermore, the actual content of rehabilitation interventions and the mechanisms by which the child’s functioning improves are generally perceived as a “Black box”. The LEARN 2 MOVE 2-3 project examined the efficacy of a child-focused, a context-focused, and a regular care approach in preschool children with CP. Furthermore, physical and occupational therapists’ behaviors in the therapy sessions of the regular care approach were compared with those of therapists in the child-focused and context-focused intervention approaches. In addition, the experiences of parents regarding their child’s intervention approach were investigated. These studies of the LEARN 2 MOVE 2-3 project were performed at the Center of Excellence for Rehabilitation Medicine from De Hoogstraat Rehabilitation and University Medical Center Utrecht, as part of a the national pediatric rehabilitation research program LEARN 2 MOVE. The LEARN 2 MOVE 2-3 project builds on the ‘Focus on Function Study’, which evaluated the efficacy of a child-focused and a context-focused approach in children with CP aged 1-6 years (Law et al., 2011). The BOSK, the Dutch association of physically disabled persons and their parents, was involved in all stages of the LEARN 2 MOVE 2-3 project. Furthermore, the study on parents’ experiences was designed together with a parent of a young child with CP. The results showed that in preschool children with CP, a child-focused, a context-focused, and a regular care approach, as delivered by physical or occupational therapists over a 6-month study intervention period in a rehabilitation setting, resulted in similar development of the children’s self-care and mobility capabilities. The finding that a child-focused and a context-focused approach resulted in similar improvements in children’s self-care and mobility capabilities is in line with the results of the Focus on Function Study (Law et al., 2011). The behaviors of the therapists in the regular care approach in the LEARN 2 MOVE 2-3 project most closely resembled that of the therapists in the child-focused approach and was found to be significantly different to that of the context-focused intervention approach. The study on the experiences of parents of young children with CP in relation to the physical and/or occupational therapy their child receives in a rehabilitation setting, showed that information, communication, and partnership, as well as the process of parent empowerment, are important themes. There was much variation in parents’ experiences and needs and parents’ needs were also found to change over time, which was related to the empowerment process most parents went through. The course of the parent empowerment process was related to the family’s context and hence found to be different for each parent. In view of the equal effectiveness of the three therapy approaches in terms of optimizing the child’s functioning in selfcare and mobility capabilities, therapists can select one of the three approaches to suit the child’s individual situation. To better support parents in the parent empowerment process, service providers working with children with chronic conditions should be educated on this process and trained in ways to facilitate this.