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International Rett syndrome study: InterRettHelen Jenny Leonard Downs MBChB MPH BApplSci (physio) MSc PhD Principal Research Fellow Head, Child Disability +61 419 956 946 08 6319 1763
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A process and impact evaluation of use of a Powered Wheelchair Standing Device by boys with Duchenne muscular dystrophyGraham Jenny Peter Hall Downs Jacoby BAppSci PhD CRFS FANZSRS FThorSoc FERS BApplSci (physio) MSc PhD BA (Hons) MSc Honorary Research Associate Head,
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Parental work schedules and hours from a cross-national perspective: a welfare regime analysis on 29 countriesTechnological advances have transformed when and for how long individuals work, a process associated with increasing polarization and precarity. Using the European Working Conditions Survey (2005-2015), we examined parental work schedules and hours across welfare regimes covering 29 European countries.
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Investigating the impact of developmental coordination difficulties across home, school, and community settings: Findings from the Australian Impact for DCD surveyTo evaluate the participation difficulties experienced by children with developmental coordination disorder in home, school, and community environments.
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The application of population data linkage to capture sibling health outcomes among children and young adults with neurodevelopmental conditions. A scoping reviewSiblings of children with neurodevelopmental conditions have unique experiences and challenges related to their sibling role. Some develop mental health concerns as measured by self-reported surveys or parent report. Few data are available at the population level, owing to difficulties capturing wide-scale health data for siblings. Data linkage is a technique that can facilitate such research.
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Culture, Connection and Care: The Role of Institutional Justice Capital for Enhancing the Wellbeing of Aboriginal and Torres Strait Islander Children in Out-Of-Home CareEnsuring that Aboriginal and Torres Strait Islander children removed from their families by child protection services remain connected to their kin, Country and culture is a priority to begin to redress the intergenerational trauma and harm caused by colonisation. This article describes the views of staff working in three mainstream out-of-home care organisations, where children are cared for by non-Indigenous foster carers.
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A core outcome set to assess chronic pain interference and impact on emotional functioning for children and young people with cerebral palsyAim: To: (1) develop a core outcome set (COS) to assess chronic pain interference and impact on emotional functioning for children and young people with cerebral palsy (CP) with varying communication, cognitive, and functional abilities; (2) categorize the assessment tools according to reporting method or observer-reported outcome measures; and (3) categorize the content of tools in the COS according to the International Classification of Functioning, Disability and Health (ICF).
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Hospitalizations Following Complex Hip Surgery in Children with Intellectual Disability: A Self-Controlled Case Series AnalysisTo evaluate the associations between complex hip surgery and subsequent hospitalizations in children with intellectual disability, including a subset of children with cerebral palsy.
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Measuring the Burden of Epilepsy Hospitalizations in CDKL5 Deficiency DisorderInformation on the hospital service use among individuals with CDKL5 Deficiency Disorder, an ultrarare developmental epileptic encephalopathy, is limited, evidence of which could assist with service planning. Therefore, using baseline and longitudinal data on 379 genetically verified individuals in the International CDKL5 Disorder Database, we aimed to investigate rates of seizure-related and other hospitalizations and associated length of stay in this cohort.
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Associations between genotype, phenotype and behaviours measured by the Rett syndrome behaviour questionnaire in Rett syndromeRett syndrome (RTT) is a rare neurodevelopmental disorder with developmental impairments, comorbidities, and abnormal behaviours such as hand stereotypies and emotional features. The Rett Syndrome Behaviour Questionnaire (RSBQ) was developed to describe the behavioural and emotional features of RTT.