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Contains fulltext : 229748.pdf (Publisher’s version ) (Open Access) Purpose: Evidence for efficacy of early intervention in infants at high risk of cerebral palsy (CP) is limited. We compared outcome of infants at very high risk of CP after receiving the family centered program COPing with and CAring for infants with special needs (COPCA) or typical infant physiotherapy.Materials and methods: Forty-three infants were randomly assigned before the corrected age of 9 months to 1 year of COPCA (n = 23) or typical infant physiotherapy (n = 20). Neuromotor development, cognition, and behavior was assessed until 21 months corrected age. Video-recorded physiotherapy sessions were quantitatively analyzed for further process analyses. Outcome was evaluated with nonparametric tests and linear mixed effect models.Results: During and after the interventions, infant outcome in both intervention groups was similar [primary outcome Infant Motor Profile: COPCA 82 (69-94), typical infant physiotherapy 81 (69-89); Hodges Lehman estimate of the difference 0 (confidence interval -5;4)]. Outcome was not associated with contents of intervention.Conclusions: One year of COPCA and 1 year of typical infant physiotherapy in infants at high risk of CP resulted in similar neurodevelopmental outcomes. It is conceivable that combinations of active ingredients from different approaches are needed for effective early intervention.IMPLICATIONS FOR REHABILITATIONFor infants at very high risk of cerebral palsy, 1 year of intervention with the family-centred programme Coping with and Caring for infants with special needs resulted in similar infant outcome as 1 year of typical infant physiotherapy.Infant's neuromotor, cognitive, and behavioural outcome was not associated with specific interventional elements, implying that the various elements may have a similar effect on developmental outcome.We suggest that a specific mix of ingredients of different approaches may work best, resulting in comprehensive care including both infant and family needs.

Background Participation in society can be difficult for adolescents with cerebral palsy (CP). Information is often based on quantitative studies, and little is known about their personal participation experiences. Objective The aim of this study was to examine the participation experiences of adolescents (aged 12‐17 years) with CP. Methods A qualitative participatory research method was used. Twenty‐three semi‐structured open interviews were conducted with 13 male and 10 female adolescents (mean age 15 years) with CP. An interview checklist was developed jointly with adolescents with CP. This checklist ensured that the adolescents reflected on various participation areas, that is school, sports, health care and work. The analysis was based on principles of grounded theory. Findings From the adolescents’ experiences, 4 key categories were identified. One concerned participation, as such, expressed as “My participation experiences,” including experiences, thoughts and feelings while participating in daily life. Three other categories concerned factors that influence participation experiences, expressed as “My disability,” “Me as a person” and “My environment.” These 4 categories together formed a model showing the interactions and dynamics of participation according to adolescents with CP. Conclusion Adolescents with CP expressed their participation experiences, including various important influencing factors. This study conceptualized these experiences into a dynamic model. This experience‐based participation model may provide new, personalized perspectives for practice, for instance in rehabilitation, but also for schools and sports (or sports clubs) attended by adolescents. Focusing on personal and environmental factors might be the key to successful participation.

Objective: To explore participation in social roles of adolescents (aged 12-18y) with cerebral palsy (CP), in terms of satisfaction compared with accomplishment. Design: Cohort study as part of a prospective longitudinal research program. Setting: Clinic. Participants: Participants were adolescents (N=45; 58% male, mean age 15y 6mo) with CP at levels I-II (88%) and III-IV-V (12%) of the Gross Motor Function Classification System. Interventions: Not applicable. Main Outcome Measures: Accomplishment (0-9 scale; with score

Contains fulltext : 229747.pdf (Publisher’s version ) (Open Access) Purpose: To compare family and functional outcome in infants at very high risk of cerebral palsy, after receiving the family centred programme "Coping with and Caring for infants with special needs (COPCA)" or typical infant physiotherapy.Materials and methods: Forty-three infants at very high risk were included before 9 months corrected age and randomly assigned to one year COPCA (n = 23) or typical infant physiotherapy (n = 20). Family and infant outcome were assessed before and during the intervention. Physiotherapy intervention sessions were analysed quantitatively for process analysis. Outcome was evaluated with non-parametric tests and linear mixed-effect models.Results: Between-group comparisons revealed no differences in family and infant outcomes. Within-group analysis showed that family's quality of life improved over time in the COPCA-group. Family empowerment was positively associated with intervention elements, including "caregiver coaching."Conclusions: One year of COPCA or typical infant physiotherapy resulted in similar family and functional outcomes. Yet, specific intervention elements, e.g., coaching, may increase empowerment of families of very high risk infants and may influence quality of life, which emphasizes the importance of family centred services.Implications for rehabilitationOne year of the family centred programme "Coping with and a Caring for infants with special needs" compared with typical infant physiotherapy resulted in similar family outcome and similar functional outcome for the infants at very high risk for cerebral palsy.Specific contents of intervention, such as caregiver coaching, are associated with more family empowerment and increased quality of life.Emphasis on family needs is important in early intervention for infants at very high risk for cerebral palsy.

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.

Aim To examine the efficacy of child-focused, context-focused, and regular care approaches, delivered in a rehabilitation setting by physical or occupational therapists to preschool children with cerebral palsy (CP), in optimizing the child's self-care and mobility capabilities. Method A multicentre randomized controlled trial clustered at therapist level was conducted in 13 rehabilitation centres. It included 68 children with CP (38 males, 30 females; mean age 3y, SD 6mo, range 1y 11mo–4y), classified as Gross Motor Function Classification System levels I to IV, who were already receiving therapy. Children received a child-focused, context-focused, or regular care approach during a 6-month period. Self-care and mobility capabilities were assessed with the Functional Skills Scale of the Pediatric Evaluation of Disability Inventory. Results The child-focused, context-focused, and regular care approaches all resulted in significant but similar improvements in self-care (regular: reference; child-focused: β=−0.11, 95% confidence interval [CI] −0.68 to 0.46; context-focused: β=0.13, CI −0.38 to 0.64) and mobility (regular: reference; child-focused: β=−0.09, CI=−0.93 to 0.75; and context-focused: β=0.14, CI −0.65 to 0.94) capabilities. Interpretation The results suggest that the three therapy approaches were equally efficacious for preschool children with CP. Depending on a child's individual situation each approach can be selected.

Contains fulltext : 53628.pdf (Publisher’s version ) (Open Access) OBJECTIVE: To obtain better insight into the health issues of young adults with cerebral palsy. DESIGN: Cross-sectional. SUBJECTS: Two data sources were used: 54 adults with cerebral palsy (age range 25-36 years) and 48 physicians (members of the Netherlands Society of Physical and Rehabilitation Medicine). METHODS: Adults with cerebral palsy participated in a physical examination and a semi-structured interview assessing several health issues and utilization of healthcare. Rehabilitation physicians completed a questionnaire on impairments they recognized as being related to cerebral palsy. RESULTS: In the patient sample, pain (59%) and joint deformities (19-57%) were observed most frequently. Evidence of a decrease in the utilization of healthcare services at adult age emerged. Lower gross motor function and cognitive level appeared to be determinants of motor and speech impairments and of the utilization of 3 allied healthcare services. Rehabilitation physicians reported pain (88%), joint deformities (86%) and fatigue (76%) as being cerebral palsy-related health problems in adults. CONCLUSION: Based on the high prevalence of pain and joint deformities and the decrease in the utilization of healthcare services, systematic follow-up in adults with cerebral palsy seems warranted. Cerebral palsy needs to be considered as a life-long condition, requiring a life-span perspective in order to better organize optimal care.

To identify physical, emotional and psychosocial issues in the older person with spina bifida (SB).Members of the Dutch patients' association aged25 years (n = 184) were asked to complete a questionnaire. This survey contained questions on physical and psychosocial complaints, as well as problems regarding social participation.A total of 61 people (33.2%) with a median age of 45 years (IQR 33.5-60.0) years responded. During the previous 5 years, 86.9% experienced new physical complaints, whereas only 13.1% remained free of new complaints. 50.8% of the persons had new bladder problems and 44.1% had bowel complaints. Older persons more often had physical complaints. New musculoskeletal problems occurred in 75.4%. Psychological problems were common (78.7%). Overall psychological problems were not associated with gender, hydrocephalus or age. Social participation was good, with 90.2% of persons taking part in some type of social activity.In this study, a majority of adult persons with SB reported newly arising physical and psychological problems during the previous 5 years. Given the large number and diversity of the newly emerging problems after adolescence, regular and multidisciplinary surveillance of adult persons with SB is recommended.Adults with spina bifida often disappear from follow-up, or are forced to take care of their follow-up themselves. According to a survey carried out among adult SB-patients from the general community, these persons continued to struggle with many physical and psychosocial problems. Given the high number of psychosocial problems in this sample of patients, psychosocial counseling could be beneficial during follow-up. This paper adds to the body of evidence indicating that multidisciplinary follow-up for SB-patients could be beneficial, also when patients grow beyond the age of 18 years.

Background It is widely accepted that infants at risk for cerebral palsy need paediatric physiotherapy. However, there is little evidence for the efficacy of physiotherapeutic intervention. Recently, a new intervention program, COPCA (Coping with and Caring for infants with special needs - a family centered program), was developed. COPCA has educational and motor goals. A previous study indicated that the COPCA-approach is associated with better developmental outcomes for infants at high risk for developmental disorders. LEARN 2 MOVE 0-2 years evaluates the efficacy and the working mechanisms of the COPCA program in infants at very high risk for cerebral palsy in comparison to the efficacy of traditional infant physiotherapy in a randomized controlled trial. The objective is to evaluate the effects of both intervention programs on motor, cognitive and daily functioning of the child and the family and to get insight in the working elements of early intervention methods. Methods/design Infants are included at the corrected age of 1 to 9 months and randomized into a group receiving COPCA and a group receiving traditional infant physiotherapy. Both interventions are given once a week during one year. Measurements are performed at baseline, during and after the intervention period and at the corrected age of 21 months. Primary outcome of the study is the Infant Motor Profile, a qualitative evaluation instrument of motor behaviour in infancy. Secondary measurements focus on activities and participation, body functions and structures, family functioning, quality of life and working mechanisms. To cope with the heterogeneity in physiotherapy, physiotherapeutic sessions are video-recorded three times (baseline, after 6 months and at the end of the intervention period). Physiotherapeutic actions will be quantified and related to outcome. Discussion LEARN 2 MOVE 0-2 years evaluates and explores the effects of COPCA and TIP. Whatever the outcome of the project, it will improve our understanding of early intervention in children with cerebral palsy. Such knowledge is a prerequisite for tailor-made guidance of children with CP and their families. Trial registration The trial is registered under NTR1428.

Background Regular participation in physical activities is important for all children to stay fit and healthy. Children with cerebral palsy have reduced levels of physical activity, compared to typically developing children. The aim of the LEARN 2 MOVE 7-12 study is to improve physical activity by means of a physical activity stimulation program, consisting of a lifestyle intervention and a fitness training program. Methods/Design This study will be a 6-month single-blinded randomized controlled trial with a 6-month follow up. Fifty children with spastic cerebral palsy, aged 7 to 12 years, with Gross Motor Function Classification System levels I-III, will be recruited in pediatric physiotherapy practices and special schools for children with disabilities. The children will be randomly assigned to either the intervention group or control group. The children in the control group will continue with their regular pediatric physiotherapy, and the children in the intervention group will participate in a 6-month physical activity stimulation program. The physical activity stimulation program consists of a 6-month lifestyle intervention, in combination with a 4-month fitness training program. The lifestyle intervention includes counseling the child and the parents to adopt an active lifestyle through Motivational Interviewing, and home-based physiotherapy to practise mobility-related activities in the daily situation. Data will be collected just before the start of the intervention (T0), after the 4-month fitness training program (T4), after the 6-month lifestyle intervention (T6), and after six months of follow-up (T12). Primary outcomes are physical activity, measured with the StepWatch Activity Monitor and with self-reports. Secondary outcomes are fitness, capacity of mobility, social participation and health-related quality of life. A random coefficient analysis will be performed to determine differences in treatment effect between the control group and the intervention group, with primary outcomes and secondary outcomes as the dependent variables. Discussion This is the first study that investigates the effect of a combined lifestyle intervention and fitness training on physical activity. Temporary effects of the fitness training are expected to be maintained by changes to an active lifestyle in daily life and in the home situation. Trial registration This study is registered in the Dutch Trial Register as NTR2099.