Patterns of participation in recreational and leisure activities among children with complex physical disabilities

Children with physical disabilities are at increased risk of limitations to participation in everyday activities. This study describes research examining the participation of children in day-to-day formal and informal activities (excluding mandated academic schooling). Using the Children's Assessment of Participation and Enjoyment (CAPE) measure, data on participation patterns were collected from 427 children (229 males, 198 females; mean age 10 y [SD 2 y 4 mo]; range 6-14 y) with physical limitations and from their families. The primary types of physical disability in the sample included cerebral palsy, spina bifida, acquired brain injury, and musculoskeletal limitations. Findings indicate a broad range of diversity and intensity of participation, with proportionately greater involvement in informal rather than formal activities. Significant differences in participation and enjoyment were found between males and females, and for children more than 12 years of age. Children's participation was less diverse in families reporting lower income, single-parent status, and lower respondent parent education. These findings provide a foundation for an improved understanding of the participation of children with physical disabilities, which can assist families and service providers in planning activities that fit with their child's preferences and ensure active participation.     

Comparing participation in activities among children with disabilities

IntroductionCompared to typically developing peers, children with disabilities due to neurodevelopmental disorders and disabilities (NDD/D) and to chronic medical conditions (CMC) have reduced participation in activities. The extent to which these two groups of children have different levels of participation is unknown and was examined in this study.MethodsThe 2006 Participation and Activity Limitation Survey children dataset collected by Statistics Canada was analyzed. Children with disabilities due to NDD/D and CMC were identified following review and classification of all ICD-10 codes in the dataset by two pediatricians. Dependent variables were parent-reported child participation in supervised and unsupervised physical activities within and outside of school, educational activities, and social/recreational activities. Logistic regression analyses, with relevant covariates (child and familial characteristics), were used to analyze the data.ResultsChildren with NDD/D were significantly more likely to take part in supervised and unsupervised physical activity at school than children with CMC (p < 0.001). A similar trend was observed for participation in school outings, although the effect was not significant at p < 0.01. Finally, a trend in the opposite direction was observed for educational activities, as children with NDD/D were less likely to take part in these activities than children with CMC.DiscussionFinding decreased participation among children with CMC compared with NDD/D was not predicted a priori but has potential implications for their mental and physical health.ConclusionsGaining a better understanding of the barriers to participation in physical activity may contribute to improving the overall health status of children with CMC.     

Spectrum of neurodevelopmental disabilities in children with cerebellar malformations

Aim Advances in perinatal care and neuroimaging techniques have increased the detection of cerebellar malformations (CBMs) in the fetus and young infant. As a result, this has necessitated a greater understanding of the neurodevelopmental consequences of CBMs on child development. The aim of this study was to delineate the impact of CBMs on long‐term neurodevelopmental outcomes. Method We conducted a cross‐sectional study and systematically identified children with CBMs born between December 2000 and December 2006. We then performed follow‐up magnetic resonance imaging studies, neurologic examination, and standardized neurodevelopmental outcome testing (Mullen Scales of Early Learning, Vineland Adaptive Behavior Scale, Child Behavior Checklist, Modified Checklist for Autism in Toddlers, and the Pediatric Quality of Life Inventory). Results Our sample comprised 49 children (29 males, 20 females; mean age, 28.4mo, SD 16.4) with a CBM. Infants with evidence of acquired fetal or neonatal brain injury, intracranial birth trauma, inherited metabolic disease, or major pre‐ or postnatal cerebral ischemia were excluded. Our findings highlight that children with CBMs experience a high prevalence of neurologic, developmental, and functional disabilities including motor, cognitive, language, and social–behavioral deficits, as well as poor quality of life. The associated supratentorial anomalies, chromosomal findings, and malformations affecting the cerebellar vermis were significant independent predictors of neurodevelopmental disabilities in young children with CBMs. The associated supratentorial anomalies and chromosomal findings were also predictive of global developmental delay (p=0.01), cognitive impairment (p=0.03), gross and fine motor delay (p=0.02 and p=0.01 respectively), and positive screening for autism spectrum disorder (p=0.01). Additionally, malformations affecting the cerebellar vermis were significant independent predictors of expressive language (p=0.04) and gross motor delays (p=0.02). Interpretation Developmental surveillance and early intervention programs should be an integral part of the long‐term follow‐up of survivors of CBM.     

Prolonged-release melatonin for children with neurodevelopmental disorders

Previous studies demonstrated the efficacy and safety of prolonged-release melatonin in children and adolescents with neurodevelopmental and behavioral disorders. The long-term effectiveness and safety of prolonged-release melatonin treatment were assessed in 88 children (42 girls and 46 boys) with neurodevelopmental disorders. These patients participated in a compassionate-use program with the drug Circadin (2 mg; Neurim Pharmaceuticals, Tel Aviv, Israel) in France, and received treatment in the context of regular care by a specialized physician. The study involved a structured questionnaire for the parents, comprising a combination of multiple-choice and numeric questions addressing sleep onset/offset, sleep quality problems, and mood. The dose of melatonin ranged from 4-6 mg, and treatment duration ranged from 6-72 months. Within 3 months, sleep latency with prolonged-release melatonin decreased by 44.0% (P < 0.001), sleep duration increased by 10.1% (P < 0.001), the number of awakenings decreased by 75% (P < 0.001), and sleep quality improved by 75%, compared with baseline (P < 0.001). No serious adverse events or treatment-related comorbidities were reported. Prolonged-release melatonin remains a safe, effective therapy for the long-term treatment of sleep disorders in children with neurodevelopmental disorders.     

Sleep-wake function in children with neurodevelopmental and psychiatric disorders

Sleep disturbance is commonly described in children with developmental problems of a primarily physical or psychiatric nature. Its persistence is likely to adversely affect cognition, mood, behavior, and family functioning. Therefore, accurate diagnosis of the underlying sleep disorder, with prompt and effective treatment, can be considered essential for overall care. Reports of sleep disturbance in various neurodevelopmental and psychiatric disorders of childhood are outlined. The origins of the disturbance in each condition may lie in the disorder itself, the child's circumstances, or reflect comorbidity. Each contributory factor has implications for treatment strategies and outcome. Much remains to be discovered about childhood sleep disorders. However, sufficient information is already known to significantly improve their recognition and management if professional education in such matters improves.     

Role of ESSENCE for preschool children with neurodevelopmental disorders

Early Symptomatic Syndromes Eliciting Neurodevelopmental Examinations (ESSENCE) has been proposed as a guide to the neurodevelopmental needs of the under 5s. The problems are their multiplicity, the presence of partial features of specific conditions e.g. autism spectrum disorder and attention deficit/hyperactivity disorder and the young age of the children. For these reasons, child development teams often leave families to cope with very difficult situations. This paper includes epilepsy and the cerebral palsies to see if providing precise diagnostic categories and therapeutic targets can be achieved. It includes a discussion of causal sequences which have yet to be applied comprehensively to the neurodevelopment disorders.     

Patterns and determinants of leisure participation of youth and adults with developmental disabilities

Background People with developmental disabilities are at high risk for a limited participation in leisure activities. The aim of this study was to investigate the participation in, preference for and interest in leisure activities of young and adults with developmental disabilities, and to examine the factors associated with leisure activity. Methods A cross‐sectional design was used with a convenience sample of 237 people aged 17 to 65, living in the community. Leisure participation was assessed with the Spanish version of Leisure Assessment Inventory. Percentages were calculated by types of activity, and repeated measures anova s were used to analyse the differences between types of activities, and mixed anova s to analyse the factors that explain differences in leisure activity participation, preference and interest. Results Leisure social activities and recreation activities at home were mostly solitary and passive in nature and were identified as those being most commonly engaged in. Respondents expressed preference for more social and physical activity, and they were interested in trying out a large number of physical activities. Age and type of schooling determine participation in leisure activity. The results underscore the differences in leisure activity participation, preference and interest depending on the severity of the disability. Conclusions The findings reveal interesting patterns of participation in leisure activities from the viewpoint of youngsters and adults with developmental disabilities. Leisure participation among people with developmental disabilities is likely to be more affected by environmental factors than by personal factors.     

Systematic review of melatonin treatment in children with neurodevelopmental disabilities and sleep impairment

Sleep disturbances in children with neurodevelopmental disabilities are common and frequently difficult to treat with conventional pharmacological and behavioural methods. Melatonin is a pineal hormone known to be important in the regulation of the circadian rhythm, including the sleep-wake cycle. This systematic review of available evidence from randomized clinical trials assesses whether melatonin plays a beneficial role in these children and, in particular, its effect on total sleep time, time to sleep onset (sleep latency), and number of awakenings. We also looked at a parental view of the effect. Randomized clinical trials were identified where oral melatonin was compared with a placebo in children with any type of neurodevelopmental disability and associated sleep disturbance. Only three studies, reporting a total of 35 children, fulfilled the criteria for inclusion. The two studies that reported time to sleep onset showed a significant decrease (p<0.05) in this specific outcome where melatonin was compared with a placebo. There was no significant effect of melatonin compared with a placebo on the other outcome measures of total sleep time, night-time awakenings, and parental opinions. Despite the extremely limited randomized clinical trial data, melatonin appears to remain a commonly prescribed drug for disturbed sleep in children with neurodevelopmental abnormalities.     

Patterns and predictors of participation in leisure activities outside of school in children and adolescents with Cerebral Palsy

This study analyzed the patterns and predictors of participation in leisure activities outside of school of Spanish children and adolescents with Cerebral Palsy (CP). Children and adolescents with CP (n = 199; 113 males and 86 females) participated in this cross-sectional study. Their mean age was 12.11 years (SD = 3.02; range 8–18 years), and they were evaluated using the Spanish version of the Children's Assessment of Participation and Enjoyment (CAPE). Means, standard deviations and percentages were used to characterize the profile of participation, and linear regression analyses were employed to assess associations between the variables (child, family and environmental factors) and the diversity, intensity and enjoyment of participation. Children and adolescents with CP reported low diversity and intensity of participation and high levels of enjoyment. Participation in leisure activities outside of school was determined more by child and environmental factors than by family ones.     

Why parents of children with neurodevelopmental disabilities requiring gastrostomy feeding need more support

This was a qualitative research study of parental perceptions of gastrostomy feeding before surgery using an in-depth interview in the parental home to examine the factors parents consider when gastrostomy feeding is recommended and to identify the need for support. Participants were a subgroup of families taking part in a larger research study evaluating gastrostomy placement in children with severe neurodevelopmental disabilities at a major paediatric centre in the UK between 1998 and 2000. Parents of 22 children (13 males, nine females; mean age 4 years 8 months [SD 3 years 6 months]; age range 1 year 1 month to 13 years 3 months) were interviewed. Categories of disability were: cerebral palsy (n=10), a syndrome of chromosomal or genetic origin (n=10), and unconfirmed diagnoses (n=2). Thirteen children were recommended for a gastrostomy and seven were recommended for a gastrostomy with an antireflux procedure. Four families were undecided about surgery at the time of the interview, two of whom went ahead with the procedure some time later. Parental accounts of oral and tube feeding were both contradictory and ambivalent. Concerns about the loss of oral feeding, which was regarded as having a range of psychosocial effects for the child and family, were raised. Both oral and tube feeding have multiple meanings for parents and signify more than obtaining an adequate nutritional intake. The need for additional information about the risks and benefits of gastrostomy and how tube feeding fits into the context of everyday life were dominant themes. The biomedical emphasis on health and weight-gains may fail to reflect parental concerns about tube and oral feeding. There is a need for greater practical and emotional support for families feeding children with severe disabilities.