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        Research

        Impacts of caring for a child with the CDKL5 disorder on parental wellbeing and family quality of life

        Investigate impacts on maternal health and family quality of life in families with a child with the CDKL5 disorder ...

        Research

        Transition to adulthood for young people with intellectual disability: the experiences of their families

        A number of themes emerged from the qualitative data which included parents' views and concerns about the capacity of their young adult to adapt and change to life in adulthood ...

        Research

        Family satisfaction following spinal fusion in Rett syndrome

        Families participating in the population-based and longitudinal Australian Rett Syndrome Database whose daughter had undergone spinal fusion provided data on... ...

        Research

        Spinal fusion in girls with Rett syndrome: Post-operative recovery and family experiences

        Rett syndrome is a severe neurodevelopmental disorder mainly affecting females and scoliosis is a common co-morbidity. Spinal fusion may be recommended if... ...

        Research

        Health conditions and their impact among adolescents and young adults with down syndrome

        The aim of this study was to examine the prevalence of medical conditions and use of health services among young adults with Down syndrome and describe the... ...

        Research

        Perspectives on hand function in girls and women with Rett syndrome

        Hand function is particularly affected and we discuss theoretical and practical perspectives for optimising hand function in Rett syndrome. ...

        Research

        Admissions in Children with Down Syndrome: Experience of a Population-Based Cohort Followed from Birth

        This study describes patterns of hospitalisations for children and young people with Down syndrome in Western Australia. ...

        Research

        Association of gestational age at birth with reasons for subsequent hospitalisation: 18 Years of follow-up in a Western Australian population study

        Preterm infants are at a higher risk of hospitalisation following discharge from the hospital after birth. ...

        Research

        The experiences of mothers of young adults with an intellectual disability transitioning from secondary school to adult life

        The transition from school to adulthood for young adults with an intellectual disability involves movement from a generally secure and supported school... ...

        Research

        Barriers to diagnosis of a rare neurological disorder in China-Lived experiences of Rett syndrome families

        Fourteen of 74 Chinese families known to the International Rett Syndrome Phenotype Database participated in this qualitative study. ...

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