Development curves of communication and social interaction in individuals with cerebral palsy

Aim: To determine development curves of communication and social interaction from childhood into adulthood for individuals with cerebral palsy (CP). Method: This Pediatric Rehabilitation Research in the Netherlands (PERRIN)-DECADE study longitudinally assessed 421 individuals with CP, aged from 1 to 20 years at baseline, after 13 years (n=121 at follow-up). Communication and social interactions were assessed using the Vineland Adaptive Behavior Scales. We estimated the average maximum performance limit (level) and age at which 90% of the limit was reached (age90) using nonlinear mixed-effects modeling. Results: One-hundred individuals without intellectual disability were aged 21 to 34 years at follow-up (39 females, 61 males) (mean age [SD] 28y 5mo [3y 11mo]). Limits of individuals without intellectual disability, regardless of Gross Motor Function Classification System (GMFCS) level, approached the maximum score and were significantly higher than those of individuals with intellectual disability. Ages90 ranged between 3 and 4 years for receptive communication, 6 and 7 years for expressive communication and interrelationships, 12 and 16 years for written communication, 13 and 16 years for play and leisure, and 14 and 16 years for coping. Twenty-one individuals with intellectual disability were between 21 and 27 years at follow-up (8 females, 13 males) (mean age [SD] 24y 7mo [1y 8mo]). Individuals with intellectual disability in GMFCS level V showed the least favourable development, but variation between individuals with intellectual disability was large. Interpretation: Individuals with CP and without intellectual disability show developmental curves of communication and social interactions similar to typically developing individuals, regardless of their level of motor function. Those with intellectual disability reach lower performance levels and vary largely in individual development. What this paper adds: Communication and social interactions in individuals with cerebral palsy without intellectual disability develop similarly to typically developing individuals. Communication and social interactions of individuals with intellectual disability develop less favourably and show large variation

Development curves of communication and social interaction in individuals with cerebral palsy

Aim: To determine development curves of communication and social interaction from childhood into adulthood for individuals with cerebral palsy (CP). Method: This Pediatric Rehabilitation Research in the Netherlands (PERRIN)-DECADE study longitudinally assessed 421 individuals with CP, aged from 1 to 20 years at baseline, after 13 years (n=121 at follow-up). Communication and social interactions were assessed using the Vineland Adaptive Behavior Scales. We estimated the average maximum performance limit (level) and age at which 90% of the limit was reached (age90) using nonlinear mixed-effects modeling. Results: One-hundred individuals without intellectual disability were aged 21 to 34 years at follow-up (39 females, 61 males) (mean age [SD] 28y 5mo [3y 11mo]). Limits of individuals without intellectual disability, regardless of Gross Motor Function Classification System (GMFCS) level, approached the maximum score and were significantly higher than those of individuals with intellectual disability. Ages90 ranged between 3 and 4 years for receptive communication, 6 and 7 years for expressive communication and interrelationships, 12 and 16 years for written communication, 13 and 16 years for play and leisure, and 14 and 16 years for coping. Twenty-one individuals with intellectual disability were between 21 and 27 years at follow-up (8 females, 13 males) (mean age [SD] 24y 7mo [1y 8mo]). Individuals with intellectual disability in GMFCS level V showed the least favourable development, but variation between individuals with intellectual disability was large. Interpretation: Individuals with CP and without intellectual disability show developmental curves of communication and social interactions similar to typically developing individuals, regardless of their level of motor function. Those with intellectual disability reach lower performance levels and vary largely in individual development. What this paper adds: Communication and social interactions in individuals with cerebral palsy without intellectual disability develop similarly to typically developing individuals. Communication and social interactions of individuals with intellectual disability develop less favourably and show large variation

Autonomy in participation in cerebral palsy from childhood to adulthood

Aim: To determine the long-term development of autonomy in participation of individuals with cerebral palsy (CP) without intellectual disability. Method: Individuals with CP (n=189, 117 males, 72 females; mean age [SD] 21y 11mo [4y 11mo], range 12–34y); were assessed cross-sectionally (46%) or up to four times (54%), between the ages of 12 and 34 years. Autonomy in participation was classified using phase 3 of the Rotterdam Transition Profile. A logistic generalized estimating equation regression model was used to analyse autonomy in six domains (independent variables: age, Gross Motor Function Classification System [GMFCS] level, and interaction between age and GMFCS level). Proportions of autonomy were compared to references using binomial tests (p<0.05). Results: In most domains, over 90% of participants (n=189, 400 observations, 80% in GMFCS levels I and II) reached autonomy in participation in their late twenties, except for intimate/sexual relationships. Those in GMFCS levels III to V compared to those in GMFCS levels I and II had less favourable development of autonomy in the transportation, intimate relationships, employment, and housing domains, and more favourable development in the finances domain. Compared to references, fewer individuals with CP were autonomous in participation. Interpretation: This knowledge of autonomy may guide the expectations of young people with CP and their caregivers. Furthermore, rehabilitation professionals should address autonomy development in intimate relationships, employment, and housing, especially in individuals with lower gross motor function. What this paper adds: Individuals with cerebral palsy without intellectual disability achieved autonomy in most participation domains. Regarding intimate relationships, they continued to have less experience compared to age-matched references. Development of autonomy was less favourable for individuals in Gross Motor Function Classification System levels III to V

Functional communication in children with cerebral palsy: an interrater reliability study

Poster presentatie op conferentie Background: Assessments of functional communication skills of children with cerebral palsy (CP), classified with the Communication Function Classification System (CFCS), often differ between the child's school teacher and the speech language therapist (SLT). Assessment by the SLT is usually based on observations in a clinical setting, which may not be representative of the functional communication skills in daily life. This study evaluated the inter-rater agreement of the CFCS assessed by the school teacher and SLT before and after observation of a communicative situation in the classroom. Methods: Functional communication of 35 children with CP (4 to 18 years; 26 with Alternative and Augmentative Communication, AAC) was classified by the own SLT and teacher using the CFCS. SLT's performed two assessments: the first without additional instructions and the second after observation of the child during a communicative situation in the classroom. For both assessments of the SLT inter-rater agreement on CFCS-level between SLT and teacher was determined using Cohen's weighted kappa statistics. Results: For the whole group, inter-rater reliability was 0.6 before observation in de classroom and 0.7 after observation. In the group without AAC weighted K was 0.67 for both assessments. In the group with AAC weighted K increased from 0.2 to 0.61. Interpretation The increased inter-rater agreement of CFCS classification between teacher and SLT after observation in the classroom, especially for children with AAC, emphasizes the need for professionals to base their CFCS assessment on observation of functional communication in everyday situations

Effects of Postural Management on Hip Migration in Children with Cerebral Palsy : A Systematic Review

Purpose: To review the existing literature on the effects of postural management on hip migration in children with cerebral palsy. Methods: A systematic literature search was performed using 5 databases. Quality of articles was assessed and study designs were appraised according to the American Academy of Cerebral Palsy and Developmental Medicine Systematic Review Method. Results: Eight of 655 identified studies were included, reporting postural management in children with cerebral palsy. Seven of 8 studies reported positive effects on hip migration after postural management interventions. However, level of evidence and quality of the articles were low. Conclusion: The evidence for postural management to prevent or reduce hip migration in children with cerebral palsy is limited by the lack of high-quality studies. Strong recommendations for clinical practice are not possible. Future high-quality research is crucial to improve our understanding of the effects of postural management to prevent hip migration in children with cerebral palsy

Managing oneself or managing together?:Parents' perspectives on chronic condition self-management in Dutch pediatric rehabilitation services

PURPOSE: With the growing attention in pediatric rehabilitation services for supporting self-management, the need increases for more shared understanding of the concept. The aim of this study was to explore parent activation, associated factors of- and underlying perceptions on parental self-management of parents of children with chronic conditions. MATERIALS AND METHODS: Using a mixed-methods strategy, first variations in self-management behaviors, motivation and perceived autonomy support were assessed with a cross-sectional survey among parents of children with chronic conditions (N = 239). Statistical analysis involved descriptive statistics and univariate analysis of variance. The survey was followed by 18 in-depth interviews with parents. Thematic analysis was used to recognize relevant topics in the qualitative data. RESULTS: In the survey most parents reported being active self-managers. Nevertheless, only one third persisted in self-management when under stress. Autonomous motivation was strongly associated with parental self-management. In the interviews, parents mentioned attuning with professionals and finding balance as important aspects of self-management. To facilitate self-management, professionals were expected to have expert knowledge, be engaged and empathic. CONCLUSION: From the perspective of parents, self-management should be viewed as a collaborative effort in which they are supported by professionals, rather than having to manage it "by themselves". Implications for rehabilitation To facilitate self-management, parents expect professionals to have expert knowledge and additionally show interpersonal competences as openness, engagement and empathy. Motivating parents may facilitate their level of self-management regarding the care for their child with a chronic disorder. Good communication and collaboration with professionals appear to be key aspects of parental self-management. Parents expect pediatric rehabilitation teams to tune their services to the needs, desires and expectations of parents to support them in "self-managing" the care for their child

Type of motivation of parents and therapist for parent self-management: One, two, three, to autonomy?

discusses the shift towards the self-management paradigm in rehabilitation for children with physical and developmental disabilities, presenting findings from a mixed-methods study on the type of motivation of parents (N = 239) and therapists (N = 175) for parent self-management. Findings include a significant, but weak association between autonomy support from professionals as perceived by parents and autonomous motivation for self-management. Analyses of open-ended interviews with parents shed light on the concrete forms of support that contribute to skills and confidence needed to take on self-management

Type of motivation of parents and therapist for parent self-management:One, two, three, to autonomy?

discusses the shift towards the self-management paradigm in rehabilitation for children with physical and developmental disabilities, presenting findings from a mixed-methods study on the type of motivation of parents (N = 239) and therapists (N = 175) for parent self-management. Findings include a significant, but weak association between autonomy support from professionals as perceived by parents and autonomous motivation for self-management. Analyses of open-ended interviews with parents shed light on the concrete forms of support that contribute to skills and confidence needed to take on self-management