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We interviewed 17 parents with a daughter with Rett syndrome to gain their perspectives on how their daughter communicates and barriers.
We aim to share our research findings with families so that they may better understand Rett syndrome and the future for their family.
Research
Systematic Review and Meta-analysis: Mental Health in ChildrenThe behavioral phenotype of neurogenetic disorders associated with intellectual disability often includes psychiatric comorbidity. The objectives of this systematic review and meta-analysis were to systematically review the prevalence of psychiatric disorders and symptoms in children and adolescents
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The Impact of Externally Worn Diabetes Technology on Sexual Behavior and Activity, Body Image, and Anxiety in Type 1 DiabetesWearable technologies impact upon sexual activity and this influences the decision to adopt the technology
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Birth outcomes in Aboriginal mother–infant pairs from the Northern Territory, Australia, who received 23-valent polysaccharide pneumococcal vaccination during pregnancyWe found a numerically higher rate of preterm births among women who received 23vPPV in pregnancy compared to unvaccinated pregnant women
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Cochrane corner: Sound therapy (using amplification devices and/or sound generators) for tinnitusThis Cochrane review shows that both hearing aids and sound generators may be beneficial for reducing tinnitus severity in some patients
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Longitudinal trajectories of BMI z-score: an international comparison of 11,513 Australian, American and German/Austrian/Luxembourgian youth with type 1 diabetesThis multinational study presents unique body mass index z score trajectories in youth with type 1 diabetes across three continents
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Perioperative pediatric tonsillectomy analgesia: A single-center review of practice and cost-effectiveness analysisTonsillectomy is one of the most common pediatric surgeries and results in considerable postoperative pain. Insufficiently managed pain is costly, risks physiological and psychological consequences with multi-modal analgesia widely recommended to minimize opioid-based agents. We determined adherence to multi-modal analgesia guidelines and assessed cost-effectiveness. We undertook a cross-sectional cohort study at a tertiary pediatric institution in Perth, Western Australia, retrospectively identifying selected patients undergoing tonsillectomy over two discrete periods of 6-week duration.
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The Role of the Avatar in Gaming for Trans and Gender Diverse Young PeopleA significant proportion of trans and gender diverse (TGD) young people report membership of the gaming community and resultant benefits to wellbeing. To date their experiences and needs regarding a key feature of games, the avatar, are largely unexplored, despite increasing interest in the therapeutic role of avatars in the general population. The aim of this study was to better understand the role of the avatar in gaming, its impact on TGD young people's mental health, and their unique needs regarding avatar design.
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Using directed-content analysis to identify a framework for understanding quality of life in adults with Rett syndromeRett syndrome (RTT) is a rare neurodevelopmental disorder mainly affecting females and is caused by a mutation in the MECP2 gene. Recent research identified the domains of quality of life (QOL) important for children with RTT but there has been no investigation of domains important for adults. This qualitative study explored QOL in adults with RTT and compared domains with those previously identified for children.