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Showing results for "Neuromuscular disorders "
This research project is a collaboration between The Kids Research Institute Australia, Muscular Dystrophy Western Australia, Perth Children’s Hospital and Curtin University.
Research
Interobserver Agreement When Diagnosing Hypoventilation in Children With Neuromuscular DisordersNeuromuscular disorders can lead to nocturnal hypoventilation. Accurate diagnosis of hypoventilation is imperative to guide treatment decisions. This study determined interobserver agreement for a number of definitions of nocturnal hypoventilation in children and adolescents with neuromuscular disorders.
Research
Quality of Life and Psychosocial Well-Being in Youth With Neuromuscular Disorders Who Are Wheelchair Users: A Systematic ReviewTo investigate quality of life (QOL) and psychosocial well-being in youth with neuromuscular disorders (NMDs) who are wheelchair users.
News & Events
The Kids study hopes to help kids with neuromuscular disorders sleep more easilyMackenzie was 10 months old when her parents, Jodie and Scott, were given the life-changing news that their daughter would never walk.
Research
Developing clinical predictors of disease progression in children with neuromuscular disorders to prevent future respiratory failureGraham Hall BAppSci PhD CRFS FANZSRS FThorSoc FERS Honorary Research Associate Honorary Research Associate Professor Graham Hall is an
Research
Parent Carer Quality of Life and Night-Time Attendance in Non-Ambulant Youth with Neuromuscular DisordersTo describe and explore carer quality of life and night-time attendance to their child in parents of non-ambulant youth with Neuromuscular Disorders. A cross-sectional population-based, comprehensive survey including the Adult Carer questionnaire, measures of social context and youths' physical status. Associations between carer-QoL or frequency of parents' night-time attendance with independent variables were explored using linear and logistic regression models, respectively.
Research
Mental wellbeing in non-ambulant youth with neuromuscular disorders: What makes the difference?Mental wellbeing was independently associated with academic achievement and perceived family support but not with physical health variables
Research
Factors influencing participation in home, school, and community settings by children and adolescents with neuromuscular disorders: A qualitative descriptive studyThis study explored how children and adolescents with a neuromuscular disorder (NMD) and their parents experienced barriers and enablers to the child's participation.
Research
A fine balance and a shared learning journey: Exploring healthcare engagement through the experiences of youth with Neuromuscular DisordersExplored Youth with Neuromuscular Disorders perceptions of health, health behaviors and healthcare engagement
Neuromuscular disorders include many rare conditions, such as Duchenne Muscular Dystrophy and Spinal Muscular Atrophy, that adversely impact respiratory health.