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Towards evidence based care for Rett syndrome: a research model to inform management of rare disorders

Helen Jenny Leonard Downs MBChB MPH BApplSci (physio) MSc PhD Principal Research Fellow Head, Child Disability +61 419 956 946 08 6319 1763

Using ambulatory monitoring to investigate awake breathing irregularities in Rett syndrome in Australian population-based and Italian clinic samples

Helen Jenny Leonard Downs MBChB MPH BApplSci (physio) MSc PhD Principal Research Fellow Head, Child Disability +61 419 956 946 08 6319 1763

Nonstandard work schedules and work–life balance in dual-earner households: The role of parenthood

This study examines whether nonstandard work schedules (NSWS) improve or hinder work-life balance (WLB) for parents and non-parents in dual-earner households.

Codesign and knowledge translation of the Strength-based, Tiered, Accessible Resources and Supports (STARS) for Kids study to identify and support child development

Many children and their families, especially those from priority populations, experience barriers to accessing high-quality early childhood health, education, social and legal services. Further, these families are often under-represented in service planning and research; hence innovations are not designed to meet their needs. Our aim is to codesign with families and the wider community, a Strength-based, Tiered, Accessible Resources and Supports for Kids (STARS for Kids) programme to optimise child development, parental mental well-being, and family psychosocial needs in the first 2000 days from pregnancy to start of school

Respiratory disease in cerebral palsy: the overlooked impact of neonatal lung disease

Respiratory disease is a leading cause of hospitalisations in children with cerebral palsy (CP). Over 40% of individuals with CP are born preterm; however, the relationship between prematurity, CP and respiratory disease is unknown.

“The Other One Was Half and Half, Half-Caste”: A Qualitative Exploration of Colonial Narratives Used to Represent Aboriginal Children by Non-Indigenous Foster Carers in Australia

Since colonisation in Australia, dominant western narratives have continually undermined the identity of Aboriginal and Torres Strait Islander peoples. Through a lens of subaltern theory, this article explores how Aboriginal children, their families, and their communities are spoken for and about as members of subaltern communities by non-Indigenous foster carers. 

Understanding parents’ experiences and needs when managing menstruation with young people with intellectual disability

Menstruation can be complex and challenging to manage, including for those with intellectual disability. People with intellectual disability experience additional barriers that prevent adequate access to information and support. Parents play an important role in supporting young people with intellectual disability with menstruation.

Effectiveness and Cost-Effectiveness of Models of Healthcare for People With Intellectual Disability in Australia: A Scoping Review

People with intellectual disability experience significant gaps in healthcare delivery resulting in poor health outcomes. Appropriately designed healthcare is required to meet the needs of this population and achieve better health outcomes. Little is known about the structure of healthcare delivery for people with intellectual disability and whether it is effective or cost-effective.

Building genetic healthcare together: an Australian co-production three-phase mixed-methods research protocol with people with intellectual disability

People with intellectual disability face significant barriers to accessing genetic healthcare, including during appointments. Many adults with intellectual disability are denied opportunities to discuss genetic testing that could improve their health and well-being.

Patterns, trends, and factors influencing hospitalizations for craniosynostosis in Western Australia. A population-based study

Understanding hospital service use among children with a diagnosis of craniosynostosis is important to improve services and outcomes. This study aimed to describe population-level trends, patterns, and factors influencing hospitalizations for craniosynostosis in Western Australia.