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Full-Text Articles in Rehabilitation and Therapy
Parent Carer Quality Of Life And Night-Time Attendance In Non-Ambulant Youth With Neuromuscular Disorders, Vivienne Travlos, Shane Patman, Jenny Downs, Dana Hince, Andrew C. Wilson
Parent Carer Quality Of Life And Night-Time Attendance In Non-Ambulant Youth With Neuromuscular Disorders, Vivienne Travlos, Shane Patman, Jenny Downs, Dana Hince, Andrew C. Wilson
Physiotherapy Papers and Journal Articles
Purpose: To describe and explore carer quality of life (QoL) and night-time attendance to their child in parents of non-ambulant youth with Neuromuscular Disorders.
Methods: A cross-sectional population-based, comprehensive survey including the Adult Carer QoL (ACQoL) questionnaire, measures of social context and youths’ physical status. Associations between carerQoL or frequency of parents’ night-time attendance with independent variables were explored using linear and logistic regression models, respectively.
Results: Parents’ perceived lower carer-QoL (mean 76.5/120, SD 18.5) when they attended to their child twice a night or more (n = 17/35) and with shorter time since their child was prescribed noninvasive ventilation …
Mental Wellbeing In Non-Ambulant Youth With Neuromuscular Disorders: What Makes The Difference?, Vivienne Travlos, Jenny Downs, Andrew Wilson, Dana Hince, Shane Patman
Mental Wellbeing In Non-Ambulant Youth With Neuromuscular Disorders: What Makes The Difference?, Vivienne Travlos, Jenny Downs, Andrew Wilson, Dana Hince, Shane Patman
Physiotherapy Papers and Journal Articles
The physical and social challenges associated with neuromuscular disorders may impact mental wellbeing in non-ambulant youth during the more vulnerable period of adolescence. This cross-sectional survey investigated non-ambulant youths’ mental wellbeing and relationships with physical health, participation and social factors. The conceptual model was the International Classification of Functioning, Disability and Health (ICF). Thirty-seven youth aged 13 – 22 years old (mean age 17.4 years; n = 30 male; n = 24 Duchenne Muscular Dystrophy) and their parents provided biopsychosocial data through a comprehensive self-report questionnaire. The primary outcome measure was the Warwick Edinburgh Mental Wellbeing Scale (WEMWBS). Relationships between …
A Fine Balance And A Shared Learning Journey: Exploring Healthcare Engagement Through The Experiences Of Youth With Neuromuscular Disorders, V Travlos, C Bulsara, S Patman, J Downs
A Fine Balance And A Shared Learning Journey: Exploring Healthcare Engagement Through The Experiences Of Youth With Neuromuscular Disorders, V Travlos, C Bulsara, S Patman, J Downs
Physiotherapy Papers and Journal Articles
BACKGROUND: Youth with Neuromuscular Disorders (NMD) who are wheelchair users can now survive well into adulthood if their multisystem comorbidities are prudently managed. Uptake of health behaviors may optimize their health outcomes.
OBJECTIVE: To explore youths’ perceptions of health, health behaviors and healthcare engagement.
METHODS: This qualitative study purposefully recruited 11 youth with NMD from a concurrent, population-based study for variability of age, gender, type of NMD and their ratings of motivation and engagement. Interview data were analyzed and synthesized by thematic content.
RESULTS: Participants perceived healthcare engagement as being given tools (knowledge and responsibility) and using them to maintain …