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Showing results for "autism"
Research
A Co-Designed Online Education Resource on Gastrostomy Feeding for Parents and Caregivers to Support Clinical CareChildren with complex needs and severe disability may undergo gastrostomy insertion to support feeding difficulties. Parent education programs are critical components of clinical care pathways but there is little information on parent-reported educational needs. This study describes the collaborative process that yielded a resource to assist parents considering gastrostomy tube placement for their children, and the evaluation of the resource.
Research
Pandemic preparedness needs for children with rare diseases and their families: A perspective of COVID-19 experiencesPeople living with rare diseases had a high risk of negative health outcomes due to COVID-19. Pandemic preparedness will ensure best practice procedures and optimal outcomes during future pandemic events. This paper sought to understand the needs of children with rare diseases during the COVID-19 pandemic to inform preparation for future pandemic and disaster events. First, impacts and outcomes from the COVID-19 pandemic on people living with rare disease were identified in the literature.
Research
Perspectives on the essential skills of healthcare decision making in children and adolescents with intellectual disabilityInvolvement in healthcare decisions is associated with better health outcomes for patients. For children and adolescents with intellectual disability, parents and healthcare professionals need to balance listening to a child's wishes with the responsibility of keeping them safe.
News & Events
Critical mass in rare diseases - an innovative internet approachThe internet is emerging as a valuable tool for scientists to gather data for critical research into rare diseases.
Research
Investigating the relationships between sun exposure and cardiometabolic dysfunctionPeter Shelley Jacoby Gorman BA (Hons) MSc BSc (Hons) PhD Biostatistician Honorary Research Associate Peter.Jacoby@thekids.org.au shelley.gorman@
Research
Evaluation of the Child and Family Assessment and Referral Network (CFARN)Yasmin Sandra Mary Harman-Smith Van Diermen Brushe BA, BHlthSc(Hons), PhD BPsych(Hons), PhD (Public Health) Head, Early Years Systems Evidence; Head
Research
Incidence and prevalence of falls in adults with intellectual disability living in the community: a systematic reviewSynthesized findings demonstrate that people with intellectual disability, who live in community or residential settings, may fall more frequently, and at a younger age
Research
Mothers' and Fathers' Work Hours, Child Gender, and Behavior in Middle ChildhoodThis study examined the association between typical parental work hours (including nonemployed parents) and children's behavior in two-parent heterosexual...
Research
Efficacy of Health Literacy Interventions for Caregivers of Individuals with Neurodevelopmental and Chronic Conditions: A Rapid ReviewCaregivers of individuals with neurodevelopmental and chronic health conditions require health literacy (HL) skills for the long-term management of these conditions. The aim of this rapid review was to investigate the efficacy of HL interventions for these caregivers.
News & Events
Worrying trends reinforce need for kids health researchChild health experts are concerned by a significant increase in the number of Australian children requiring learning support at school.