School of Physiotherapy, University of Notre Dame Australia, Fremantle, Western Australia, Australia.
Telethon Kids Institute, Hospital Avenue, Nedlands, Western Australia, Australia.
Dev Neurorehabil. 2021 Oct;24(7):456-465. doi: 10.1080/17518423.2021.1908440. Epub 2021 May 4.
: 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. A cross-sectional population-based, comprehensive survey including the Adult Carer QoL (AC-QoL) 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. 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 (NIV). Parental night-time attendance was not associated with youth's actual use of NIV, but was more likely when youth required assistance to turn in bed, reported frequent sleep discomfort and had more severe joint contractures. To optimize parent carer-QoL, interventions must address parents' frequency of night-time attendance and youths' sleep comfort.
描述并探讨非运动障碍青年父母照顾者的生活质量（QoL）和夜间照顾其子女的情况。采用横断面基于人群的综合调查，包括成人照顾者生活质量（AC-QoL）问卷、社会环境衡量指标和青少年的身体状况。使用线性和逻辑回归模型分别探讨了照顾者生活质量或父母夜间照顾频率与自变量之间的关联。当父母每晚照顾孩子两次或更多次（n=17/35）且其孩子开始使用无创通气（NIV）的时间较短时，父母会感到照顾者的生活质量较低（平均 76.5/120，标准差 18.5）。父母夜间照顾与青少年实际使用 NIV 无关，但当青少年需要协助翻身、频繁出现睡眠不适或关节挛缩更严重时，这种情况更有可能发生。为了优化父母照顾者的生活质量，干预措施必须解决父母夜间照顾的频率和青少年的睡眠舒适度问题。
