Self-care and hand function in preschool children with unilateral or bilateral cerebral palsy: A cross-sectional study.

AIMS: To describe self-care capabilities among children with cerebral palsy (CP) and explore associations between self-care and hand function for children with unilateral cerebral palsy (UCP) and children with bilateral cerebral palsy (BCP) separately. METHOD: Cross-sectional data on self-care capabilities (Pediatric Evaluation of Disability Inventory, PEDI), manual abilities (Manual Ability Classification System, MACS) and hand use during bimanual performance (Assisting Hand Assessment, AHA; Both Hands Assessment, BoHA) were retrieved from the Norwegian Quality and Surveillance Registry for Cerebral Palsy (NorCP). Eighty-seven children with CP (UCP, n = 61, mean age 4 years 1 month, SD 1 year 3 months, range 56) or BCP (n = 26, mean age 4 years 4 months, SD 1 year, range 41), classified at MACS level I (n = 26), II (n = 40) or III (n = 21), were included. RESULTS: No significant differences in self-care capabilities were found between children with UCP and children with BCP. Analysis of variance showed significant differences in self-care between MACS levels for the whole group. No significant differences in self-care between MACS levels were observed for children with UCP (p = 0.36), but significant differences were found for those with BCP (p < 0.001). Whereas a small correlation (r = 0.3) between PEDI and AHA scores was found for children with UCP, a large correlation (r = 0.6) was found for those with BCP. Children with BCP with symmetric hand use during bimanual performance (BoHA) had higher PEDI scores than children with asymmetric hand use. CONCLUSION: Though children with UCP and children with BCP who were classified at MACS I-III exhibited similar self-care capabilities, the limited hand use seems to contribute differently between the two groups. The two different measures of hand use exhibit different associations with self-care capabilities for young children with UCP and BCP, respectively, and illustrate the need to treat UCP and BCP as two distinct groups, each requiring tailored interventions according to their specific needs.

Provision of augmentative and alternative communication interventions to Norwegian preschool children with cerebral palsy: are the right children receiving interventions?

Preschool children with cerebral palsy (CP) with no or unintelligible speech need augmentative and alternative communication (AAC), but not all children needing AAC have access to it. This study describes the use and perceived benefit of AAC and explores factors associated with receiving AAC interventions. Using a cross-sectional design, we combined parent-reported data with data from the Norwegian Quality and Surveillance Registry for Cerebral Palsy (NorCP). Communication, speech and hand function was classified according to the Communication Function Classification System (CFCS), Viking Speech Scale (VSS), and Manual Ability Classification System (MACS), accordingly. The need for AAC was defined as Levels III-V on the CFCS, without simultaneous classification at VSS Level I, and/or Levels III-IV on VSS. Parents reported on child- and family-directed AAC interventions using the Habilitation Services Questionnaire. Of the 95 children (42 females) with CP (M = 39.4 months, SD = 10.3), 14 had communication aids. Of the 35 children (31.4%) defined as needing AAC, 11 had been provided with communication aids. Parents of children with a communication aid reported satisfaction with and frequent use of the aid. Children at MACS Level III-V (OR = 3.4, p = .02) or with epilepsy (OR = 8.9, p < .01) were most likely to have received an AAC intervention. The low proportion of children receiving communication aids indicates an unmet need for AAC interventions among preschool children with CP.

Development of Hand Use with and Without Intensive Training Among Children with Unilateral Cerebral Palsy in Scandinavia.

AIM: To describe hand use development in children with unilateral cerebral palsy who did/did not participate in constraint-induced movement therapy (CIMT) before 7 years of age. METHOD: The study included 334 participants (18 months-12 years) who were assessed with 1,565 Assisting Hand Assessments (AHAs) and categorized into no intensive training (NIT), CIMT (18 months-7 years), and Baby-CIMT (<18 months) groups. RESULTS: AHA performance at 18 months (AHA-18) was positively associated with development regardless of training. The CIMT group had lower AHA-18 performance than the NIT group (p = .028), but higher stable limit (p = .076). The age when 90% of development was reached was highest in the CIMT group (p = .014). Although non-significant, the Baby-CIMT group had higher mean curve than NIT and CIMT combined (AHA-18 p = .459, limit p = .477). CONCLUSION: The CIMT group improved more over time than the NIT group. Intensive training extended the window of development, and Baby-CIMT might promote early development.

Systematic Monitoring of Cognition for Adults With Cerebral Palsy-The Rationale Behind the Development of the CPCog-Adult Follow-Up Protocol.

Cerebral palsy (CP) comprises a heterogeneous group of conditions recognized by disturbances of movement and posture and is caused by a non-progressive injury to the developing brain. Birth prevalence of CP is about 2-2.5 per 1,000 live births. Although the motor impairment is the hallmark of the diagnosis, individuals with CP often have other impairments, including cognitive ones. Cognitive impairments may affect communication, education, vocational opportunities, participation, and mental health. For many years, CP has been considered a "childhood disability," but the challenges continue through the life course, and health issues may worsen and new challenges may arise with age. This is particularly true for cognitive impairments, which may become more pronounced as the demands of life increase. For individuals with CP, there is no one-to-one correlation between cognition and functioning in other areas, and therefore, cognition must be individually assessed to determine what targeted interventions might be beneficial. To facilitate this for children with CP, a systematic follow-up protocol of cognition, the CPCog, has been implemented in Norway and Sweden. However, no such protocol currently exists for adults with CP. Such discontinuity in healthcare services that results from lack of follow-up of cognitive functioning and subsequent needs for adjustments and interventions makes transition from pediatric to adult healthcare services challenging. As a result, a protocol for the surveillance of cognition in adults with CP, the CPCog-Adult, has been developed. It includes assessment of verbal skills, non-verbal reasoning, visual-spatial perception, and executive functioning. It is recommended to perform these assessments at least once in young adulthood and once in the mid-fifties. This report describes the process of developing the CPCog-Adult, which has a three-fold purpose: (1) to provide equal access to healthcare services to enable the detection of cognitive impairments; (2) to provide interventions that increase educational and vocational participation, enhance quality of life, and prevent secondary impairments; and (3) to collect systematic data for research purposes. The consent-based registration of data in the well-established Swedish and Norwegian national CP registries will secure longitudinal data from childhood into adulthood.

Hand use development in children with unilateral cerebral palsy.

AIM: To describe the development of hand use during bimanual activities among children with unilateral cerebral palsy (CP). METHOD: A cohort of 166 children (79 females, 87 males; age range 18mo-13y, mean [SD] age at first assessment 37.6mo [20.5mo]) with unilateral CP, registered in the Norwegian CP Follow-up Program with two or more Assisting Hand Assessments (AHAs), were included in this longitudinal study comprising 524 AHAs. Developmental limits and rates were estimated by non-linear mixed effects models and compared between a stable limit model (SLM) and a peak and decline model. Development was described according to Manual Ability Classification System (MACS) levels and AHA performance at 18 months of age (AHA-18). RESULTS: Children in MACS level I, or in the high AHA-18 group, reached highest limits and had the most rapid development (p<0.001). The developmental trajectories were different between MACS levels I, II, and III and between the high, moderate, and low AHA-18 groups. Seventy-five per cent of the children reached 90% of their estimated limit at 5 years 10 months or earlier. The SLM showed the best model fit (Akaike information criterion: 4008.99). INTERPRETATION: Most children approached a steady performance limit before 6 years of age. Although children in MACS levels I and II reached 90% of the expected limit at 3 and 4 years respectively, the corresponding age was 8 years for children in MACS level III. The better model fit for the SLM indicates that children with unilateral CP maintain their attained limit of hand use to at least the age of 13 years. What this paper adds Development of hand use between 18 months and 13 years follows a stable-limit pattern. Most children reach a steady limit on the Assisting Hand Assessment before 6 years of age. Manual Ability Classification System levels I, II, and III represent distinct developmental trajectories, level III having a slower rise. Early hand use is an important indicator of future development.

Living life with cerebral palsy? A description of the social safety nets for individuals with cerebral palsy in the Nordic countries.

AIMS: This report reviews major laws, acts and regulations of social benefits and services for individuals with disabilities, focusing on cerebral palsy in the five Nordic countries. It summarizes the available benefits and services and the re-application process and provides comparative analyses among the countries. METHODS: Published reports, articles and relevant government and municipal websites were reviewed for each respective country and used to compile an overview and comparison between the countries. RESULTS: In the Nordic countries, there are a number of laws and regulations in place to support individuals with cerebral palsy and their families. In addition, there are numerous social benefits available for which individuals with disabilities can apply. Although there are national differences, the similarities across the five countries regarding laws, social benefits offered for individuals with cerebral palsy and the application processes are clear. However, the application processes seem cumbersome and, at times, redundant. Physicians and other healthcare specialists repeatedly need to write 'medical certificates' describing the diagnosis and its consequences for a disability that is chronic and lifelong. CONCLUSIONS: Participation in society for individuals with cerebral palsy disabilities can be enabled by social benefits. By extension, social benefits may indirectly have implications for public health in individuals with disabilities. Although the lives of individuals with cerebral palsy - as with others - can improve in certain areas, the need for social benefits will generally increase, not decrease, over time. Although it is clearly important to have checks and balances that prevent system misuse, it might be worthwhile from a cost-benefit perspective to investigate whether the current systems could be improved to better manage time and resources and avoid emotional distress by streamlining the application process.

Home Programme to Improve Hand Function for Children with Bilateral Cerebral Palsy: Beneficial but Challenging.

Aim: To explore parents' and occupational therapists' experiences with a home program using goal-directed training to improve hand function in daily activities for children with bilateral cerebral palsy.Methods: The study had a qualitative exploratory design that included two focus group interviews. One group consisted of five parents, the other of three occupational therapists. Data were analyzed by qualitative content analysis. The intervention consisted of daily goal-directed training, with a dose of 25-33 hours for eight weeks. Weekly visits from the occupational therapists were provided.Results: Three themes were identified; 1) Home training promotes parent awareness and the child's mastery, 2) Home training is challenging and exhausting over time, and 3) Parent support is necessary, and the child's involvement is important. The parents reported improvements in the children's use of hands in daily activities.Conclusion: The findings indicate that the home program was beneficial but challenging, and that motivation is a key factor for implementing home-based intervention. Ongoing support to the parents, as well as strengthening the children's involvement may enhance motivation. Future research should focus on developing strategies to increase motivation, and on exploring a "hybrid" model for home training divided between home and kindergarten or school.

Development of bimanual performance in young children with cerebral palsy.

AIM: To describe the development of bimanual performance among young children with unilateral or bilateral cerebral palsy (CP). METHOD: A population-based sample of 102 children (53 males, 49 females), median age 28.5 months (interquartile range [IQR] 16mo) at first assessment and 47 months (IQR 18mo) at last assessment, was assessed half-yearly with the Assisting Hand Assessment (AHA) or the Both Hands Assessment (BoHA) for a total of 329 assessments. Developmental limits and rates were estimated by nonlinear mixed-effects models. Developmental trajectories were compared between levels of manual ability (Mini-Manual Ability Classification System [Mini-MACS] and MACS) and AHA or BoHA performance at 18 months of age (AHA-18/BoHA-18) for both CP subgroups, and additionally between children with bilateral CP with symmetric or asymmetric hand use. RESULTS: For both CP subgroups, children classified in Mini-MACS/MACS level I, and those with high AHA-18 or BoHA-18 reached the highest limits of performance. For children with bilateral CP the developmental change was small, and children with symmetric hand use reached the highest limits. INTERPRETATION: Mini-MACS/MACS levels and AHA-18 or BoHA-18 distinguished between various developmental trajectories both for children with unilateral and bilateral CP. Children with bilateral CP changed their performance to a smaller extent than children with unilateral CP. WHAT THIS PAPER ADDS: Manual Ability Classification System levels and Assisting Hand Assessment/Both Hands Assessment performance at 18 months are important predictors of hand use development in cerebral palsy (CP). Children with bilateral CP improved less than those with unilateral CP. Children with bilateral CP and symmetric hand use reached higher limits than those with asymmetry.

The challenges of describing rehabilitation services: A discussion paper.

To apply the Classification of Service Organization in Rehabilitation (ICSO-R) classification of services to different target groups, include the user perspective, identify missing categories, and propose standardized descriptors for the categories from a Norwegian perspective. Expert-based consensus conferences with user involvement. Health professionals, stakeholders and users. Participants were divided into 5 panels, which applied the ICSO-R to describe the habilitation and rehabilitation services provided to children with cerebral palsy and people with Huntington's disease, acquired brain injuries (traumatic brain injuries and stroke) and painful musculoskeletal conditions. Based on the Problem/Population, Intervention, Comparison, Outcome (PICO) framework, the services were described according to the ICSO-R. Missing categories were identified. The ICSO-R was found to be feasible and applicable for describing a variety of services provided to different target groups in Norway, but the user perspective was lacking, categories were missing, and a need for standardized description of the categories was identified. The present work supports the need to produce an updated version of the ICSO-R and to encourage national and international discussion of the framework. The ICSO-R has the potential to become a tool for the standardized assessment of rehabilitation services. For such purposes, more standardized descriptions of subcategories are necessary.

Hand Function in a Population-Based Sample of Young Children with Unilateral or Bilateral Cerebral Palsy.

AIM: To describe aspects of hand function in a population-based sample of young children with clinical signs of unilateral or bilateral cerebral palsy (CP). METHOD: A cross-sectional study with data from national CP registers in Norway. Manual ability was classified with the Manual Ability Classification System (MACS) or Mini-MACS. Hand use in bimanual activities was measured with the Assisting Hand Assessment (AHA) for unilateral CP or the newly developed Both Hands Assessment (BoHA) for bilateral CP. RESULTS: From 202 children, 128 (57 females) were included (Mini-MACS/MACS levels I-V, mean age 30.4 months; SD = 12.1). Manual abilities were distributed across levels I-III in unilateral CP and levels I-V in bilateral CP. Variations in AHA and BoHA units were large. One-way ANOVA revealed associations between higher AHA or BoHA units and Mini-MACS/MACS levels of higher ability (p < 0.01) and higher age (p < 0.04). CONCLUSIONS: Compared with young children with unilateral CP, children with bilateral CP showed greater variation in Mini-MACS/MACS levels, and both sub-groups showed large variations in AHA or BoHA units. The classifications and assessments used in this study are useful to differentiate young children's ability levels. Such information is important to tailor upper limb interventions to the specific needs of children with CP.

Hand Function in Young Children with Cerebral Palsy: Current Practice and Parent-Reported Benefits.

AIMS: To (1) describe characteristics of current interventions to improve hand function in young children with Cerebral Palsy (CP), and explore factors associated with (2) increased likelihood of hand and ADL training and (3) child benefits of training. METHODS: A cross-sectional design was used with parent-reported data and data from the Norwegian CP Follow-up Program (CPOP). A total of 102 children (53% of the cohort of newly recruited children in the CPOP, mean age: 30.3 months, SD: 12.1) were included. Hand function was classified according to the Mini-Manual Ability Classification System (Mini-MACS). Data were analyzed with descriptive statistics, cross-tables and direct multiple logistic regressions. RESULTS: The majority of the children performed training of hand skills and ADL. Parents reported high amounts of training, and training was commonly integrated in everyday activities. Both parents (OR = 5.6, p < .011) and OTs (OR = 6.2, p < .002) reported more hand training for children at Mini-MACS levels II-III compared to level I. Parents reported larger child benefits when training was organized as a combination of training sessions and practice within everyday activities (OR = 7.090, p = .011). CONCLUSIONS: Parents reported that the children's everyday activities were utilized as opportunities for training, hence describing the intensity of therapy merely by counting minutes or number of sessions seems insufficient.

Visual and haptic perception of postural affordances in children and adults.

The present study compared how children and adults perceived affordances for upright stance when information was available either visually or haptically. 12 adults (mean age=26.5 years) and 13 children (mean age=4.5 years) examined an adjustable wooden platform that was randomly set at five different degrees of inclination (17, 22, 27, 33, 39). In the haptic condition, a masking curtain excluded vision of the platform and the surface was explored with a hand-held, wooden dowel. Results showed that for both children and adults there was closer agreement between perceptual judgments and action capabilities in the visual condition. Children overestimated their ability to stand on the steeper slopes, took equal amounts of time to make their judgments across all slopes, and were equally confident in their judgments across all slopes. In contrast, adults were more accurate than children at judging the affordances for upright stance, took longer to respond close to the actual action boundary, and were less confident close to the action boundary. Furthermore, adults took longer to respond and were less confident in the haptic condition whereas children had similar response times and were equally confident in both conditions. These important differences between adults and children in the perception of a basic affordance are discussed with reference to the coupling between perception and action at different phases of the lifespan and to the factors that might influence the organization of this coupling. Finally, implications are drawn for the prevention of accidents and the promotion of basic motor competence in children.