Executive function is associated with behaviour problems in children and adolescents with cerebral palsy and intellectual disability.

Background: Children and adolescents with cerebral palsy (CP) commonly have behaviour problems. The present study aimed to determine which of the most common clinical features experienced by children and adolescents with CP and intellectual disability are associated with behaviour problems.

Method: We investigated 11 possible associated variables including epilepsy, visual and hearing impairments, motor difficulties, communication and speech difficulties, pain, sleep disturbance, executive function (EF) deficits, type of CP, and parent stress.

Childhood and Adulthood Predictors of Community Participation by Autistic Adults With and Without Intellectual Disability.

Background: Few studies have explored community participation for autistic adults, with or without intellectual disability. This study aims to investigate how autistic adults participate in the community, and the childhood and adulthood factors that predict community participation in adulthood.

Method: Eighty-four autistic adults (mean age 34 years; 67% with co-occurring intellectual disability) initially recruited as children and adolescents, participated in the current study.

The relationship between cardiac activity, behaviour and endogenous oxytocin and vasopressin in Prader-Willi Syndrome: An exploratory study.

This study aimed to increase our understanding of cardiac activity abnormalities in Prader-Willi Syndrome (PWS) and the relationship between cardiac activity, PWS behaviours thought to be associated with cardiac vagal tone and endogenous oxytocin and vasopressin levels. We compared cardiac activity (respiratory sinus arrhythmia (RSA), low-frequency heart rate variability (LF-HRV), heart period) in 30 adolescents and adults with PWS to 30 typically developing age-matched controls. RSA, LF-HRV, and heart period were lower in individuals with PWS than in the control group.

The relationship between endogenous oxytocin and vasopressin levels and the Prader-Willi syndrome behaviour phenotype.

Background: Oxytocin and vasopressin systems are altered in Prader Willi syndrome (PWS). However, investigations into endogenous oxytocin and vasopressin levels as well as clinical trials evaluating the effect of exogenous oxytocin on PWS symptoms have had mixed results. It is also unknown whether endogenous oxytocin and vasopressin levels are associated with certain PWS behaviours.

Efficacy of cannabinoids in neurodevelopmental and neuropsychiatric disorders among children and adolescents: a systematic review.

A better understanding of the endocannabinoid system and a relaxation in regulatory control of cannabis globally has increased interest in the medicinal use of cannabinoid-based products (CBP). We provide a systematic review of the rationale and current clinical trial evidence for CBP in the treatment of neuropsychiatric and neurodevelopmental disorders in children and adolescents. A systematic search of MEDLINE, Embase, PsycINFO, and the Cochrane Central Register of Trials was performed to identify articles published after 1980 about CBP for medical purposes in individuals aged 18 years or younger with selected neuropsychiatric or neurodevelopmental conditions.

Predictors of Change in Stepping Stones Triple Interventions: The Relationship between Parental Adjustment, Parenting Behaviors and Child Outcomes.

The current study explored the process of change in Stepping Stones Triple P (SSTP) using a community-based sample of 891 families of children with developmental disabilities (DD) who participated in an SSTP intervention at a community level. A preliminary analysis of outcome data indicated that SSTP intervention was effective in reducing parental adjustment difficulties, coercive parenting, and children's behavioral and emotional difficulties immediately after the intervention. The effects were maintained at 12-month follow-up.

Parental Adjustment Scale: Validation of a brief, five-item measure of parental adjustment for use with families of typically developing children and children with developmental and/or intellectual disabilities in Australia.

Background: Explores the validity of the five-item parental adjustment scale, a subscale of the previously validated Parenting and Family Adjustment Scales.

Aim: The aim was to assess the factor structure and convergent validity of a measure of parental adjustment within parents of typically developing children and parents of childiren with developmental and/or intellectual disabilities.

Methods And Procedures: Cross-sectional survey data was analysed from Australian parents of children aged 2-12 years who were typically developing children (N = 683) and had developmental and/or intellectual disabilities (N = 756).

Social and community inclusion outcomes for adults with autism with and without intellectual disability in Australia.

Background: Research suggests that adults with autism tend to have poor outcomes. Outcomes have mostly been defined using summary outcome ratings, with less focus on specific outcomes such as employment, living situation, social satisfaction, loneliness, and friendships. This study aimed to explore social and community outcomes, including employment, education, living arrangements, friendships, and social satisfaction, for autistic adults with and without intellectual disability.

Behavioral features in Prader-Willi syndrome (PWS): consensus paper from the International PWS Clinical Trial Consortium.

Prader-Willi syndrome (PWS) is a rare neurodevelopmental genetic disorder associated with a characteristic behavioral phenotype that includes severe hyperphagia and a variety of other behavioral challenges such as temper outbursts and anxiety. These behaviors have a significant and dramatic impact on the daily functioning and quality of life for the person with PWS and their families. To date, effective therapies addressing these behavioral challenges have proven elusive, but several potential treatments are on the horizon.

Coercive parenting: modifiable and nonmodifiable risk factors in parents of children with developmental disabilities.

Background: Parents of children with developmental or intellectual disabilities tend to report greater use of coercive parenting practices relative to parents of typically developing children, increasing the risk of adverse child outcomes. However, to date, there is limited research exploring the role and relative contribution of modifiable and nonmodifiable risk factors in parents of children with a disability. The present study aimed to explore the role of various modifiable and nonmodifiable parenting, family and sociodemographic factors associated with the use of coercive parenting practices in parents of children with a disability.

Clozapine in the management of persistent destructive behaviour in a 17-year-old boy with intellectual disability.

The management of challenging and refractory destructive behaviour in young patients with intellectual disability (ID) is a major issue faced by families, carers and healthcare professionals who support them. Often, paediatricians and psychiatrists use various behavioural and psychopharmacological approaches, including polypharmacy. We report on one such patient who benefitted greatly from a trial of clozapine, resulting in less aggression, improved quality of life and potentially huge cost savings.

Participation in sport and physical activity in adults with intellectual disabilities.

Background: People with intellectual disability face a number of barriers to participation in physical activity. This paper aimed to determine rates of sport and physical activity participation in an Australian sample of adults with intellectual disability, compared with rates of participation in the general Australian population. A secondary aim was to investigate factors that may contribute to participation of adults with intellectual disability.

Assessment of emotions and behaviour by the Developmental Behaviour Checklist in young people with neurodevelopmental CNVs.

Background: A number of genomic conditions caused by copy number variants (CNVs) are associated with a high risk of neurodevelopmental and psychiatric disorders (ND-CNVs). Although these patients also tend to have cognitive impairments, few studies have investigated the range of emotion and behaviour problems in young people with ND-CNVs using measures that are suitable for those with learning difficulties.

Methods: A total of 322 young people with 13 ND-CNVs across eight loci (mean age: 9.

Societal cost of childhood intellectual disability in Australia.

Background: There is limited research quantifying the direct and indirect economic costs associated with intellectual disability (ID) in Australia. Costs incurred by families, governments and broader society include time spent providing care, absenteeism and increased healthcare utilisation. The purpose of this research is to quantify the costs associated with ID in childhood using a range of methods to collect cost data.

Health-related quality of life amongst primary caregivers of children with intellectual disability.

Background: Children with intellectual disability (ID) frequently have significant educational, social and health care needs, resulting in caregivers often experiencing a wide range of negative effects. This paper aims to determine the impact of childhood ID on caregivers' health-related quality of life (HRQoL) across co-morbid diagnostic groups. The second aim of this study is to determine the risk factors associated with lower HRQoL in this population.

Jandu Yani U 'For All Families' Triple P-positive parenting program in remote Australian Aboriginal communities: a study protocol for a community intervention trial.

Introduction: The population-based (Lililwan) study of fetal alcohol spectrum disorder (FASD) revealed a high prevalence of FASD in the remote communities of the Fitzroy Valley, Western Australia (WA) and confirmed anecdotal reports from families and teachers that challenging child behaviours were a significant concern. In response, Marninwarntikura Women's Resource Centre initiated a partnership with researchers from The University of Sydney to bring the positive parenting program (Triple P) to the Valley. Triple P has been effective in increasing parenting skills and confidence, and improving child behaviour in various Indigenous communities.

The characteristics of temper outbursts in Prader-Willi syndrome.

The purpose of this study was to develop a comprehensive understanding of temper outbursts in Prader-Willi syndrome (PWS). A survey was developed from interviews conducted with individuals with PWS and their caregivers. The survey was completed by 101 primary caregivers.

Health professional perceptions regarding screening tools for developmental surveillance for children in a multicultural part of Sydney, Australia.

Background: Encouraging early child development and the early identification of developmental difficulties is a priority. The Ministry of Health in the Australian State of New South Wales (NSW), has recommended a program of developmental surveillance using validated screening questionnaires, namely, the Parents' Evaluation of Development Status (PEDS) and Ages and Stages Questionnaire (ASQs), however, the use of these tools has remained sub-optimal. A longitudinal prospective birth cohort "Watch Me grow" study was carried out in the South Western Sydney (SW) region of NSW to ascertain the uptake as well as the strategies and the resources required to maximise engagement in the surveillance program.

Using Discrete-Choice Experiment Methods to Estimate the Value of Informal Care: The Case of Children with Intellectual Disability.

Objectives: This research produces a preference-based monetary valuation of informal care provided to children with intellectual disability (ID) that can be directly applied in economic evaluations.

Methods: A discrete-choice experiment (DCE) was designed to elicit an individual's willingness to accept compensation for different care tasks. Respondents were presented choice sets that included a care package comprising different amounts and types of care and asked to choose between the care package provided free of charge or providing that care themselves and receiving cash compensation.

A review of clinical trials of oxytocin in Prader-Willi syndrome.

Purpose Of Review: PWS is a severe developmental disability for which there is no known treatment. The oxytocin system is currently a primary target for intervention. The aim of this article is to review the evidence for the efficacy of intranasal oxytocin in PWS.

Parenting and family adjustment scales (PAFAS): validation of a brief parent-report measure for use with families who have a child with a developmental disability.

Background: Children with a developmental disability are three to four times more likely than their typically developing peers of developing significant emotional and behavioural problems. There is strong evidence to suggest that individual biological and psychological factors interact with family functioning to precipitate and perpetuate these problems.

Aims: This study examined the psychometric properties of a brief measure, the Parent and Family Adjustment Scales (PAFAS) for use with parents of children with a developmental disability.

Concurrence of the strengths and difficulties questionnaire and developmental behaviour checklist among children with an intellectual disability.

Background: The Strengths and Difficulties Questionnaire (SDQ) is widely used to measure emotional and behavioural problems in typically developing young people, although there is some evidence that it may also be suitable for children with intellectual disability (ID). The Developmental Behaviour Checklist - Parent version (DBC-P) is a measure of emotional and behavioural problems that was specifically designed for children and adolescents with an ID. The DBC-P cut-off has high agreement with clinical diagnosis.

Microstructural white matter tract alteration in Prader-Willi syndrome: A diffusion tensor imaging study.

Prader-Willi Syndrome (PWS) is a genetic disorder characterized by infantile hypotonia, hyperphagia, hypogonadism, growth hormone deficiency, intellectual disability, and severe emotional and behavioral problems. The brain mechanisms that underpin these disturbances are unknown. Diffusion tensor imaging (DTI) enables in vivo investigation of the microstructural integrity of white matter pathways.

Syndrome specific modules to enhance the Stepping Stones Triple P public health intervention.

Background: Service responses to behaviour phenotypes include care by expert clinicians, syndrome-specific clinics, disability-specific mental health services and generic mental health services. While these services contribute to care, they are often of limited accessibility.

Methods: We describe a population-wide public health intervention aimed at increasing the accessibility of services to the target population.

Maternal help-seeking for child developmental concerns: Associations with socio-demographic factors.

Aim: To examine socio-demographic factors associated with maternal help-seeking for child developmental concerns in a longitudinal birth cohort study. An understanding of these factors is critical to improving uptake of services to maximise early identification and intervention for developmental concerns.

Methods: A birth cohort was recruited from the post-natal wards of two teaching hospitals and through community nurses in South Western Sydney, Australia, between November 2011 and April 2013.