Parent Carer Quality of Life and Night-Time Attendance in Non-Ambulant Youth with Neuromuscular Disorders

Purpose: To describe and explore carer quality of life (QoL) night-time attendance to their child in parents non-ambulant youth with Neuromuscular Disorders.Methods: A cross-sectional population-based, comprehensive survey including the Adult Carer QoL (AC-QoL) questionnaire, measures social context youths’ physical status. Associations between carer-QoL or frequency parents’ independent variables were explored using linear logistic regression models, respectively.Results: Parents’ perceived lower (mean 76.5/120, SD 18.5) when they attended twice a night more (n = 17/35) shorter time since was prescribed noninvasive ventilation (NIV). Parental not associated youth’s actual use NIV, but likely required assistance turn bed, reported frequent sleep discomfort had severe joint contractures.Conclusions: optimize parent carer-QoL, interventions must address comfort.