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Research

The diagnostic odyssey for children living with a rare disease – Caregiver and patient perspectives: A narrative review with recommendations

Children living with a rare disease often endure a lengthy journey to diagnosis, commonly referred to as a diagnostic odyssey. This journey significantly impacts their physical, mental and financial wellbeing, in addition to that of their families. The diagnostic odyssey is often characterised by anxiety and stress surrounding the uncertainty of the future. This is experienced by the patient as well as by the family.

Research

Stiffness Mediated-Mechanosensation of Airway Smooth Muscle Cells on Linear Stiffness Gradient Hydrogels

In obstructive airway diseases such as asthma and chronic obstructive pulmonary disease (COPD), the extracellular matrix (ECM) protein amount and composition of the airway smooth muscle (ASM) is often remodelled, likely altering tissue stiffness. The underlying mechanism of how human ASM cell (hASMC) mechanosenses the aberrant microenvironment is not well understood.

Research

Who suffered most? Parental stress and mental health during the COVID-19 pandemic in Germany

This study examines gender and socioeconomic inequalities in parental psychological wellbeing (parenting stress and psychological distress) during the COVID-19 pandemic in Germany. Background: The dramatic shift of childcare and schooling responsibility from formal institutions to private households during the pandemic has put families under enormous stress and raised concerns about caregivers’ health and wellbeing.

Research

What supports are people with intellectual disability living in group homes provided to access health care? A case study

People with intellectual disabilities living in group homes often have complex health needs, are high health service users and need support from their service provider to access health services. In Australia, little is known about the types and amounts of these supports.

Research

Filling Gaps in Adolescent Health Measurement: Taking Stock of Progress and Priorities Ahead

Citation: Keogh SC, Guthold R, Newby H, …….. Azzopardi P, Fagan L, et al. Filling Gaps in Adolescent Health Measurement: Taking Stock of Progress and

Research

Delivery of PEGylated liposomal doxorubicin by bispecific antibodies improves treatment in models of high-risk childhood leukemia

High-risk childhood leukemia has a poor prognosis because of treatment failure and toxic side effects of therapy. Drug encapsulation into liposomal nanocarriers has shown clinical success at improving biodistribution and tolerability of chemotherapy. However, enhancements in drug efficacy have been limited because of a lack of selectivity of the liposomal formulations for the cancer cells.

Research

Adaptations to scale-up an early childhood education and care physical activity intervention for real-world availability — Play Active

Adaptations for scale-up are ubiquitous but are rarely described in detail. Adaptations may be a key reason for the "scale-up penalty" which is when there is a reduction in intervention effect size following scale-up. The Play Active intervention consists of a physical activity policy for early childhood education and care (ECEC) services, with accompanying implementation support strategies.

Research

The moderating role of parent perceptions in relationships between objectively measured neighbourhood environment attributes and pre-schooler's physical activity: Findings from the PLAYCE study

We examined the moderating effects of parent perceptions of the neighbourhood environment on associations between objectively measured neighbourhood environment attributes and physical activity among pre-schoolers. The number of neighbourhood parks was positively associated with pre-schooler energetic play when parents had above average perceptions of access to services.

Research

Lived experiences of the diagnostic assessment process for fetal alcohol spectrum disorder: A systematic review of qualitative evidence

Early assessment and diagnosis of FASD are crucial in providing therapeutic interventions that aim to enhance meaningful participation and quality of life for individuals and their families, while reducing psychosocial difficulties that may arise during adolescence and adulthood. Individuals with lived experience of FASD have expertise based on their own lives and family needs. Their insights into the assessment and diagnostic process are valuable for improving service delivery and informing the provision of meaningful, person- and family-centered care. To date, reviews have focused broadly on the experiences of living with FASD.

Research

Objectively measured infant and toddler screen time: Findings from a prospective study

Screen time guidelines recommend no screens under two years due to the potential negative impacts on development. While current reports suggest many children exceed this, research relies on parent reports of their children's screen exposure. We objectively assess screen exposure during the first two years and how it differs by maternal education and gender.