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This study examined the family emotional climate as assessed by Five Minute Speech Samples and the relation with parenting stress and parenting behaviors among parents of children (6-17 years, 64.7% boys) with autism spectrum disorder, cerebral palsy, Down syndrome, and without any known disability (n = 447). The large majority of parents (79%) showed low levels of Expressed Emotion, an indicator of a positive family climate. In all groups, more Emotional Over-involvement, more Criticism and fewer expressions of Warmth were associated with higher levels of parenting stress. Across groups, Emotional Over-involvement was related to more autonomy-supportive parenting, Criticism to more psychologically controlling and overreactive parenting, and Warmth was associated with more responsive and less psychologically controlling and overreactive parenting., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

This two-year longitudinal study addressed the joint contribution of parent-rated parenting behaviors and child personality on psychosocial outcomes in 118 families of children with Cerebral Palsy (M age Time 1 = 10.9 years old, 64.4% boys). Latent change modeling revealed intra-individual changes in children's psychosocial development as internalizing and externalizing behaviors increased from the first to the second assessment and psychosocial strengths increased from the second to the third assessment, whereas externally controlling and autonomy-supportive parenting behavior remained stable over time. Externally controlling parenting related to higher levels of, and increases in behavioral problems, with these associations being most pronounced among children low on Extraversion, Conscientiousness, or Imagination. Autonomy-supportive parenting related to higher levels of psychosocial strengths, with this association being most pronounced among children high on Emotional Stability., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC part of Springer Nature.)

The purpose of this study was to advance the current understanding of the daily dynamics that are involved in raising a child with Cerebral Palsy (CP). Specifically, we examined the role of mindful parenting and of day-to-day variation in parents' psychological needs and child behavior in explaining day-to-day variation in parents' autonomy-supportive, psychologically controlling, and responsive parenting behavior. Parents (N = 58) of children with CP (Mage = 12.68 years) participated in a 7-day diary study. Multilevel analyses indicated that parents' autonomy-supportive, psychologically controlling, and responsive behaviors fluctuate considerably between days. Further, daily fluctuations in both child behavior and parents' own psychological needs were found to be associated with this daily variability in parenting. In addition, interindividual differences in mindful parenting were associated positively with parents' responsiveness and negatively with psychologically controlling parenting across the week. These findings point towards the changeability of parenting behavior among parents of a child with CP and suggest that interventions targeting parenting behavior in the context of CP will be most effective when taking into account both the parents' and the child's functioning.

Background & Aims: Children with cerebral palsy (CP) are at risk for under-nutrition. The European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) guidelines identified anthropometric nutritional red flags for neurologically impaired children: weight for age z-score (WFA) < -2, triceps skinfold (TSF) or arm muscle area (AMA) < 10th centile and faltering weight. This study aimed to (1) evaluate the nutritional status of Flemish children and adolescents with CP using different anthropometric indicators; (2) assess the prevalence of nutritional red flags and (3) identify risk factors for low anthropometric parameters., Methods: This study was a prospective, longitudinal observational study recruiting children and adolescents with CP (2-20 years) in 9 specialized Flemish centres. Measurements were performed at baseline (t 1 , n = 325), after 6 (t 2 , total n = 268) and 12 months (t 3 , total n = 191). WFA z-scores were based on Flemish growth charts; TSF, subscapular skinfolds (SSF) and AMA compared with US reference data. Weight faltering was defined as ≥0.5 decrease in weight SDS at t 2 or t 3 ., Results: At t 1 50 patients (15.4%) were classified as gross motor function classification system (GMFCS) 1, 95 (29.2%) as GMFCS 2, 49 (15.1%) as GMFCS 3, 54 (16.6%) as GMFCS 4, and 77 (23.7%) as GMFCS 5. The overall median (Q1; Q3) age was 11.7 (8.2; 15.9) years; 61.5% were boys and 22 (6.8%) had a gastrostomy (17 (22.1%) of GMFCS 5 group). The median (Q1; Q3) WFA z-score was -1.13 (-2.6; -0.1); 71.4% of the GMFCS 5 children had a WFA z-score < -2. The median (Q1; Q3) MUAC z-score was 0.17 (-0.7; 1.0); 16.9% of the GFMCS 5 children had MUAC z-score < -2. Median (Q1; Q3) TSF and SSF z-scores were respectively -0.01 (-0.8; 0.9) and 0.27 (-0.3; 0.9). All anthropometric indices tended to decrease with increasing GMFCS (p < 0.001). At t 1 42.1% had at least one nutritional red flag, at t 2 40.3% and at t 3 41.4%. Of those with at least one nutritional red flag at t 1 or t 2 , respectively 14.7% and 18.8% suffered weight loss 6 months later. A GMFCS >2 and dysphagia were associated with a higher risk for lower scores of nearly all nutritional indices., Conclusions: Underweight was detected in almost three quarters of CP patients with GMFCS 5 classification, whereas deficits in subcutaneous fat and arm muscle reserve were observed in one fifth. Nutritional red flags, present in about 40% of the Flemish CP children, were apparently not successfully addressed in clinical practice, since up to one-fifth of CP patients with warning signs lost even further weight in the following 6 months. Beside a GMFCS >2, dysphagia was one of the most common conditions influencing the presence of low nutritional indices., (Copyright © 2019 Elsevier Ltd and European Society for Clinical Nutrition and Metabolism. All rights reserved.)

This study examined the family emotional climate as assessed by Five Minute Speech Samples and the relation with parenting stress and parenting behaviors among parents of children (6-17 years, 64.7% boys) with autism spectrum disorder, cerebral palsy, Down syndrome, and without any known disability (n = 447). The large majority of parents (79%) showed low levels of Expressed Emotion, an indicator of a positive family climate. In all groups, more Emotional Over-involvement, more Criticism and fewer expressions of Warmth were associated with higher levels of parenting stress. Across groups, Emotional Over-involvement was related to more autonomy-supportive parenting, Criticism to more psychologically controlling and overreactive parenting, and Warmth was associated with more responsive and less psychologically controlling and overreactive parenting.

Because parents of children with cerebral palsy encounter many challenges, the quality of their parenting varies substantially across time. To understand how and why their parenting behaviors change across time, we examined the contributions of child behavior and parents' psychological needs to explanations of yearly variation in responsive, autonomy-supportive, and psychologically controlling parenting. We also explored whether parents' motivation to take care of their child explained why some parents engage in better-quality parenting than others. Parents (N = 117) of children with cerebral palsy (M[subscript age] = 10.98 years) participated in a three-wave longitudinal study. Multilevel analyses indicated that yearly variations in parents' need satisfaction and frustration related to yearly fluctuations in, respectively, autonomy-supportive and psychologically controlling parenting. Child behaviors had few unique effects on parenting. Parents' autonomous motivation was associated with better overall quality of parenting. We discuss implications for practice and directions for future research.

Abstract: Background: The Dyskinesia Impairment Scale (DIS) is a new scale for measuring dystonia and choreoathetosis in dyskinetic Cerebral Palsy (CP). Previously, reliability of this scale has only been assessed for raters highly experienced in discriminating between dystonia and choreoathetosis. Aims: The aims of this study are to examine the reliability of the DIS used by inexperienced raters, new to discriminating between dystonia and choreoathetosis and to determine the effect of clinical expertise on reliability. Methods: Twenty-five patients (17 males; 8 females; age range 5–22 years; mean age = 13 years 6 months; SD = 5 years 4 months) with dyskinetic CP were filmed with the DIS standard video protocol. Two junior physiotherapists (PTs) and three senior PTs, all of whom were new to discriminating between dystonia and choreoathetosis, were trained in scoring the DIS. Afterward, they independently scored all patients from the video recordings using the DIS. Reliability was assessed by (1) Intraclass Correlation Coefficient (ICC), (2) Standard Error of Measurement (SEM) and Minimal Detectable Difference (MDD) and (3) Cronbach''s alpha for internal consistency. Results: Interrater reliability for the total DIS, and for the dystonia and choreoathetosis subscales was good for the junior PTs and moderately high to excellent for the senior PTs. SEM and MDD values for the total DIS were 6% and 15% respectively for the junior PTs and 4% and 12% respectively for the senior PTs. Cronbach''s alpha ranged between 0.87 and 0.95 for the junior PTs and between 0.76 and 0.93 for the senior PTs. Conclusions: Reliability of the DIS scores for the inexperienced junior and senior PTs was sufficient in comparison with scores from the experienced raters in the previous study, indicating that the DIS can be used by inexperienced PTs new to discriminating between dystonia and choreoathetosis, and also that its reliability is not dependent on clinical expertise. However, based on the measurement errors and questionnaire data, familiarity with operational definitions of dystonia and choreoathetosis is crucial to improve scoring reliability. [Copyright &y& Elsevier]

Aim The aim of this study was to examine the reliability and validity of the Dyskinesia Impairment Scale (DIS). The DIS consists of two subscales: dystonia and choreoathetosis. It measures both phenomena in dyskinetic cerebral palsy (CP). Method Twenty-five participants with dyskinetic CP (17 males; eight females; age range 5-22y; mean age 13y 6mo; SD 5y 4mo), recruited from special schools for children with motor disorders, were included. Exclusion criteria were changes in muscle relaxant medication within the previous 3 months, orthopaedic or neurosurgical interventions within the previous year, and spinal fusion. Interrater reliability was verified by two independent raters. For interrater reliability, intraclass correlation coefficients were assessed. Standard error of measurement, the minimal detectable difference, and Cronbach's alpha for internal consistency were determined. For concurrent validity of the DIS dystonia subscale, the Barry-Albright Dystonia Scale was administered. Results The intraclass correlation coefficient for the total DIS score and the two subscales ranged between 0.91 and 0.98 for interrater reliability. The reliability of the choreoathetosis subscale was found to be higher than that of the dystonia subscale. The standard error of the measurement and minimal detectable difference values were adequate. Cronbach's alpha values ranged from 0.89 to 0.93. Pearson's correlation between the dystonia subscale and Barry-Albright Dystonia Scale was 0.84 ( p<0.001). Interpretation Good to excellent reliability and validity were found for the DIS. The DIS may be promising for increasing insights into the natural history of dyskinetic CP and evaluating interventions. Future research on the responsiveness of the DIS is warranted. [ABSTRACT FROM AUTHOR]