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Imagine you had a healthy daughter one day and the next being told she has an incurable condition that requires day-to-day care and insulin treatment to stay alive.
Our study investigated the quality of measurements obtained using the Rett Syndrome Gross Motor Scale.
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CGM start-up sessionsDiabetes WA is providing free ‘start-up’ information and training sessions for families new to CGM, in partnership with PMH.
Research
Fatal Perinatal Mitochondrial Cardiac Failure Caused by Recurrent De Novo Duplications in the ATAD3 LocusIn about half of all patients with a suspected monogenic disease, genomic investigations fail to identify the diagnosis. A contributing factor is the difficulty with repetitive regions of the genome, such as those generated by segmental duplications. The ATAD3 locus is one such region, in which recessive deletions and dominant duplications have recently been reported to cause lethal perinatal mitochondrial diseases characterized by pontocerebellar hypoplasia or cardiomyopathy, respectively.
Research
“We are in this together”: Experiences of relationship satisfaction in couples raising a child with autism spectrum disorderCouples can be supported in these key areas to strengthen their relationship to serve as a source of resilience for families with a child with ASD
Research
Viewpoints on what is important to maintain relationship satisfaction in couples raising a child with autism spectrum disorderCouples should be supported to strengthen communication processes and work in partnership to raise their child with ASD through family-centred interventions
Research
Consumer and community involvement in health and medical research: evaluation by online survey of Australian training workshops for researchersThe effect that attending a consumer and community participation had on their awareness of and attitudes to consumer and community involvement
Research
Process evaluation of a randomised controlled trial intervention designed to improve rehabilitation services for Aboriginal Australians after brain injury: the Healing Right Way TrialHealing Right Way (HRW) aimed to improve health outcomes for Aboriginal Australians with stroke or traumatic brain injury by facilitating system-level access to culturally secure rehabilitation services. Using a stepped-wedge randomised controlled trial design, a two-pronged intervention was introduced in four rural and four urban hospitals, comprising cultural security training for staff and training/employment of Aboriginal Brain Injury Coordinators to support Aboriginal patients for 6-months post-injury.
Research
Improving compliance with swallowing exercise to decrease radiotherapy-related dysphagia in patients with head and neck cancerDysphagia, one of the most common complications in head and neck cancer (HNC) treated with radiotherapy, can severely affect patients’ quality of life. Currently, because no “gold standard” treatment exists, swallowing exercise remains the main rehabilitation strategy for dysphagia. However, patients’ compliance with long-term swallowing exercise is only 40%, thus, greatly compromising outcomes. This article aims to analyze thefactors influencing swallowing exercise compliance in patients with HNC and explains strategies developed to date for improved rehabilitation outcomes.