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Risk and resilience factors impacting the mental health and wellbeing of siblings of individuals with neurodevelopmental conditions: A mixed methods systematic reviewThis pre-registered systematic review synthesised and evaluated the existing literature on self-reported mental health and wellbeing of siblings of individuals with neurodevelopmental conditions.
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Gestational age as a predictor for subsequent preterm birth in New South Wales, AustraliaThere is no validated evidence base on predictive ability and absolute risk of preterm birth by gestational age of the previous pregnancy. We conducted a retrospective cohort study of mothers who gave birth to their first two children in New South Wales, 1994-2016. For each week of final gestational age of the first birth, we calculated relative and absolute risks of subsequent preterm birth.
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Characterising quality of life and its determinants for children with intellectual disability and their familiesAndrew Helen Jenny Peter Videos Whitehouse Watch and listen to Andrew Leonard Downs Jacoby PhD MBChB MPH BApplSci (physio) MSc PhD BA (Hons) MSc
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Multigenerational Familial and Environmental Risk for Autism (MINERvA) NetworkThe MINERvA Network will allow more accurate and precise determination of the contributions of familial and environmental factors to the etiology of autism.
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What I Wish I Had Known: Examining Parent Accounts of Managing the Health of Their Child With Intellectual DisabilityAppropriate support for the health of children with an intellectual disability by parents and healthcare professionals is pivotal, given the high risk of chronic conditions. However, there is limited research that has collected important insights from parents on their learnings for supporting their child's evolving healthcare needs.
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Siblings of Individuals With Neurodevelopmental Conditions: Perspectives on Risk, Resiliency and Future Research DirectionsSiblings of individuals with neurodevelopmental conditions (NDCs) are at increased genetic and environmental risk for poorer psychosocial and neurocognitive outcomes compared to control groups of siblings of individuals without NDCs.
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Eating and drinking abilities and respiratory and oral health in children and young adults with cerebral palsyTo investigate the potential risk factors of respiratory illness (ethnicity, oral health, and eating and drinking ability) in children and young adults with cerebral palsy.
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Pandemic preparedness needs for children with rare diseases and their families: A perspective of COVID-19 experiencesPeople living with rare diseases had a high risk of negative health outcomes due to COVID-19. Pandemic preparedness will ensure best practice procedures and optimal outcomes during future pandemic events. This paper sought to understand the needs of children with rare diseases during the COVID-19 pandemic to inform preparation for future pandemic and disaster events. First, impacts and outcomes from the COVID-19 pandemic on people living with rare disease were identified in the literature.
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Exploring Oral Health Related Quality of Life in Rett Syndrome Using Directed Content AnalysisNo validated oral health-related quality of life (OHRQOL) instrument currently exists for those with severe intellectual and developmental disabilities and who communicate non-verbally. This qualitative study aimed to explore the domains that were important to the oral health-related quality of life in individuals with Rett syndrome.
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Factors influencing participation in home, school, and community settings by 6- to 9-year-old children born preterm: a qualitative descriptive studyThere is no published information on preterm children's activities and participation during middle childhood, a time when growth and development are characterised by increasing motor, reasoning, self-regulation, social and executive functioning skills. This study explored the health, activities and participation of children born very preterm during middle childhood (6-9 years) from the perspectives of their parents.