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Research

Exploring Oral Health Related Quality of Life in Rett Syndrome Using Directed Content Analysis

No 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.

Research

What I Wish I Had Known: Examining Parent Accounts of Managing the Health of Their Child With Intellectual Disability

Appropriate 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.

Research

Lived Experiences of Empowerment in Parents of Trans Children and Adolescents

The construct of empowerment is associated with beneficial outcomes in numerous populations with well-being across multiple domains. Within families, empowerment has been found to be related to both parent and child well-being. As such, empowerment appears to be a promising concept to support parents of young (< 18 years) trans and gender diverse children and adolescents; however, what empowerment means for parents of trans children and adolescents is not known.

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How can modeling responsibly inform decision-making in malaria?

When models are used to inform decision-making, both their strengths and limitations must be considered. Using malaria as an example, we explain how and why models are limited and offer guidance for ensuring a model is well-suited for its intended purpose.

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An anti-junk food ad from a sports commercial break reduced junk food consumption inclinations, yet junk food ads had minimal to no impact

In Australia, there are concerns that unrestricted junk food advertising during sports broadcasts increases short-term junk food consumption among viewers. Therefore, the present study aimed to estimate the impact of junk food and anti-junk food advertising on consumption inclinations.

Research

Siblings of Individuals With Neurodevelopmental Conditions: Perspectives on Risk, Resiliency and Future Research Directions

Siblings 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. 

Research

Short-Term Diabetic Retinopathy Status in People with Type 1 Diabetes Commencing Automated Insulin Delivery

Rapid improvements in glucose control may lead to early worsening of diabetic retinopathy (EWDR). There is a need to demonstrate safety in people commencing automated insulin delivery (AID) due to the known efficacy in rapid glycemic improvement. We aimed to investigate short-term DR outcomes in people (aged ≥13 years) with type 1 diabetes after initiation of AID (use ≥6 months).

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Eating and drinking abilities and respiratory and oral health in children and young adults with cerebral palsy

To investigate the potential risk factors of respiratory illness (ethnicity, oral health, and eating and drinking ability) in children and young adults with cerebral palsy.

Research

X-Linked Hypophosphataemia and Burosumab: A Systemic Disease With a New Treatment

X linked hypophosphataemia (XLH) is a systemic, chronic condition that significantly impairs quality of life. In XLH, a phosphate regulating endopeptidase homologue X-linked (PHEX) gene mutation leads to excess fibroblast growth factor 23 (FGF23), causing hypophosphataemia and subsequent rickets, lower limb deformity, pain and other sequelae, however there are likely other non-FGF23 mediated mechanisms contributing to disease

Research

Justice capital: Delivering equitable outcomes for indigenous children in state care

This chapter outlines the concept of ‘justice capital’. It commences with a discussion of the impacts of colonization on Indigenous people in Australia, with a particular focus on Indigenous children placed in state care systems.