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Research

Burden of illness in Rett syndrome: initial evaluation of a disorder-specific caregiver survey

Rett syndrome (RTT) is a severe X-linked neurodevelopmental disorder associated with multiple neurologic impairments. Previous studies have shown challenges to the quality of life of individuals with RTT and their caregivers. However, instruments applied to quantify disease burden have not adequately captured the impact of these impairments on affected individuals and their families. Consequently, an international collaboration of stakeholders aimed at evaluating Burden of Illness in RTT was organized.

Research

Where are the alcohol advertising hotspots near schools?

Physically locating liquor stores near schools can strongly influence the chances of youth accessing and consuming alcohol, and may also increase children's exposure to alcohol advertising. Investigating the association between the presence of a liquor store near a school and the prevalence of outdoor alcohol advertising is crucial from a policy perspective, as it can inform future regulations on the placement of liquor stores and outdoor advertising near educational institutions. 

Research

“I Don’t Get to Play With My Mum Anymore”: Experiences of Siblings Aged 8–12 of Children With Cancer: A Qualitative Study

Siblings of children with cancer have been shown to experience disruption in multiple domains including family, school, and friendships. Existing literature on siblings' experiences focuses on older children or on a broad range of ages.

Research

Population-level 5-year event-free survival for children with cancer in Australia

Event-free survival considers other adverse events in addition to mortality. It therefore provides a more complete understanding of the effectiveness and consequences of treatment than standard survival measures, but is rarely reported at the population level for childhood cancer.

Research

Identifying barriers and facilitators for the effective diagnosis and provision of primary health care for otitis media from the perspective of carers of Aboriginal children

To identify the barriers and facilitators for timely detection and optimal management of otitis media in Aboriginal children in a primary care setting from the perspective of carers of Aboriginal children. 

Research

Challenges and considerations for antifungal prophylaxis in children with acute myeloid leukemia

Children receiving treatment for acute myeloid leukemia (AML) are at high risk of invasive fungal disease (IFD). Evidence from pediatric studies support the efficacy of antifungal prophylaxis in reducing the burden of IFD in children receiving therapy for AML, yet existing antifungal agents have specific limitations and comparative data to inform the optimal prophylactic approach are lacking.

Research

Erratum: Attitudes, perceptions, and experiences of Western Australians towards vaccine safety surveillance systems following COVID-19 vaccines: A qualitative descriptive study (Australian and New Zealand Journal of Public Health (2024) 48(1), (S132602002

Concerns regarding adverse events following immunisation are a barrier to vaccine uptake. Health professionals use vaccine safety surveillance systems (VSSS) to monitor vaccines and inform the public of safety data. With little known about public attitudes, perceptions, and experiences with VSSS, we examined them in the context of COVID-19 vaccinations in Western Australia.

Research

“It Just Makes You Feel Horrible”: A Thematic Analysis of the Stigma Experiences of Youth with Anxiety and Depression

Experiencing stigma is associated with a range of negative outcomes for people with mental health disorders. However, little is understood about the contemporary stigma experiences of young people with anxiety and depression. This study aimed to describe these experiences using semi-structured qualitative interviews.

Research

Per Os to Protection – Targeting the Oral Route to Enhance Immune-mediated Protection from Disease of the Human Newborn

Valerie Verhasselt MD, PhD Head, Immunology and Breastfeeding 0402997617 Valerie.verhasselt@thekids.org.au Head, Immunology and Breastfeeding @

Research

World Society for Pediatric Infectious Diseases calls for action to ensure fair prices for vaccines

The eradication of smallpox is considered one of the greatest achievements of humankind, thanks to vaccination. The widespread availability of childhood vaccines has substantially reduced childhood morbidity and mortality. Devastating infections, such as polio, have almost disappeared due to vaccination. In 2021, it was estimated that vaccination against ten selected pathogens will have averted 69 million deaths between 2000 and 2030. Increases in vaccine coverage and introduction of additional vaccines should reduce lifetime mortality by 72% in the 2019 birth cohort. However, access to vaccines that prevent life-threatening and disabling infectious diseases remains unequal.