Wheelchair Mobility Confidence Scale for Dutch youth using a manual wheelchair.

Purpose: The objective of this study was to develop a questionnaire to assess confidence in wheelchair mobility in Dutch youth (WheelCon-Mobility Dutch Youth).Methods: (1) A forward-backward translation process was used to translate the original WheelCon-M from English to Dutch. (2) Items related to wheelchair mobility in Dutch youth were selected and adapted based on focus groups with youth, parents and health care professionals to create the WheelCon-Mobility Dutch Youth. (3) The WheelCon-Mobility Dutch Youth and the Utrecht Pediatric Wheelchair Mobility Skills Test 2.0 (UP-WMST 2.0) were administered to 62 participants to evaluate internal consistency and construct validity.Results: Translation and cultural adaptation led to general adaptations in instructions, sentence structure and response scale. At the item level, 24 items were included with (n = 17) and without (n = 7) adaptation, 10 items were deleted and 7 new items were included. The WheelCon-Mobility Dutch Youth had an excellent Cronbach's alpha of 0.924 and a significant correlation (r = 0.44, p < .001) with the UP-WMST 2.0.Conclusions: This study resulted in the adaptation of the WheelCon-M into the WheelCon-Mobility for Dutch youth using a manual wheelchair. Our study suggests there is evidence supporting the internal consistency and construct validity of the WheelCon-Mobility Dutch Youth.Implications for RehabilitationThe WheelCon-Mobility Dutch Youth is a newly developed tool for assessing confidence in wheelchair mobility in Dutch youth using a manual wheelchair.It is important to assess performance and confidence in wheelchair mobility in paediatric rehabilitation.

Nutritional care: The 'poor child' of clinical care in children with cerebral palsy.

There is a considerable risk of malnutrition for children with Cerebral Palsy (CP) due to insufficient nutritional intake. The most important causes of insufficient intake are feeding problems which are highly prevalent in children with CP (depending on definition, age and heterogeneity of the researched population). Considering these facts, nutritional status should have the full attention of healthcare professionals but this is not yet the case. Evidence from research in clinical practice suggests that: 1) there is no consensus regarding who should perform the measurement and how often, 2) no standardised nutritional assessment is implemented, and 3) there is suboptimal communication and management about feeding and nutritional status in most healthcare networks. To overcome these problems, validated and practical tools for the screening and assessment of nutritional status should be a topic of research and subsequently made available and implemented in clinical practice. Because body composition is an objective indicator of available energy stores, research should focus on optimising measurement methods to determine body composition using anthropometric measures or bioelectrical impedance analysis (BIA). Furthermore, there is a definite need among health care providers for explicit and clear agreements on organisation and communication about nutritional care for children with CP.

Is Fitbit Charge 2 a feasible instrument to monitor daily physical activity and handbike training in persons with spinal cord injury? A pilot study.

STUDY DESIGN: It is a longitudinal pilot study. OBJECTIVES: To investigate the feasibility of a low-cost and widely used fitness tracker with step count and heart rate data to monitor daily physical activity in wheelchair users with spinal cord injury (SCI). SETTING: Dutch community. METHODS: Six participants with SCI who were in training for a handbike event were recruited. They were asked to wear a Fitbit Charge 2® 24 h a day for at least 2 weeks and were questioned about the utility and user-friendliness of this device. RESULTS: Five out of six participants managed to wear the device nonstop for 2 weeks, and continued to wear the device after this initial period. Most participants were enthusiastic about the direct feedback provided by the tracker and reported the data to be accurate. Data collected during more than 2 months of three participants and during 8 months on one of them showed the possibility of detecting training days and observing interpersonal and intrapersonal variation in daily physical activity level. CONCLUSIONS: A commercially available, low-cost, self-monitoring multi-sensor wrist device or a fitness tracker like the Fitbit Charge 2® can be a promising instrument to monitor daily activity levels among wheelchair users with SCI. The free commercial dashboard and log data clearly show trends of variations in physical activity and increases in heart rate, which are of value to both researchers and clinicians interested in identifying training schedules of wheelchair athletes.

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.

Parents' experiences with physical and occupational therapy for their young child with cerebral palsy: a mixed studies review.

Understanding the experiences of parents with their child's intervention might help meet the needs of parents and, subsequently get them engaged in their child's intervention. As parents' early beliefs regarding their child's intervention has consequences for treatment participation, it is important to understand these parental perspectives. The aim of this mixed studies review was to give an overview of the experiences and related factors of parents of young children (0-5 years of age) with cerebral palsy in relation to the physical and/or occupational therapy of their child in a rehabilitation setting. The literature was searched systematically for qualitative and quantitative studies published between January 1990 and July 2011. Inclusion criteria were (1) the study population consisted of parents of children with cerebral palsy, with at least 25% of children under the age of five; (2) children had received physical and/or occupational therapy in a rehabilitation setting; and (3) the experiences of the parents with their child's therapy were addressed. Data were synthesized with the framework synthesis method resulting in a conceptual framework describing the factors that are related to the parents' experiences with their child's interventions. A total of 13 studies (eight qualitative and five quantitative) were included and evaluated. Parents expressed various aspects in context, process and outcomes when asked about their experiences with their child's intervention. They had different needs over time and needed time to build a collaborative relationship with their child's therapists. The proposed framework acknowledges the various aspects in context, process and outcomes that parents reported when asked about their experiences. Knowing this, the importance of the broader context of the child in a family should be acknowledged; realizing the impact that the demands of daily life, supports and resources provided to parents, attitudes in the community and culture have on parental experiences.

Predicting leisure participation of school-aged children with cerebral palsy: longitudinal evidence of child, family and environmental factors.

OBJECTIVE: This longitudinal study aims to determine which child, family and environmental variables measured at 2 years of age predict leisure participation in formal and informal activities in school aged children with cerebral palsy (CP). METHODS: Parents of 46 children with CP (mean age at baseline: 2 years 6 months, SD 0 years 1 month; at follow-up 6 years 7 months, SD 0 years 9 months; n = 26 boys, n = 20 girls; Gross Motor Classification System I = 30%, II = 7%, III = 28%, IV = 24%, V = 11%) completed the Children's Assessment of Participation and Enjoyment indicating their child's participation. Multivariate regression models were used to identify early predictors of participation. RESULTS: Movement ability was a significant child-related predictor for formal activities (R(2) 17%, P < 0.05). Movement ability and social skills were most predictive (R(2) 62%, P < 0.00) for informal activities. The feeling of being restricted in family participation was the single most predictive factor for formal and informal activities at family level (R(2) 12%, P < 0.05, R(2) 25%, P < 0.05). Type of daycare was the only environmental variable that was predictive, and only for informal activities (R(2) 16%, P < 0.05). In the overall model movement ability was most predictive for leisure participation in formal activities (R(2) 17%, P < 0.05). Movement ability and social skills are the most important predictors for informal leisure participation (R(2) 62%, P < 0.01). CONCLUSIONS: Several variables are found to be related to formal and informal participation at age 6. Movement ability and social skills at age 2 are most predictive of leisure participation when the child is 6 years old.

What influences participation in leisure activities of children and youth with physical disabilities? A systematic review.

In 2001 the International Classification of Functioning (ICF) defined participation as 'someone's involvement in life situations'. Participation in leisure activities contributes to the development of children and their quality of life. Children with physical disabilities are known to be at risk for participation in fewer activities. The group of children with physical disabilities is highly heterogeneous consisting of children with different diagnosis and different ages. This systematic review aims to analyse the literature for the purpose of looking for variables involved in the frequency of participation in leisure activities for children and youth with different diagnoses and ages. Frequency of participation in leisure activities for children and youth with physical disabilities is associated with a variety of variables. Gross motor function, manual ability, cognitive ability, communicative skills, age and gender are the most important variables. The current evidence suggests that similar variables seem to apply to children with different diagnoses. Age is an important variable in participation of children and youth. However evidence about those variables associated with children at different ages is still lacking.

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.