ABSTRACT

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 (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.

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 (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.

Conclusions: To optimize parent carer-QoL, interventions must address parents’ frequency of night-time attendance and youths’ sleep comfort.

摘要

目的：描述和探索患有神经肌肉疾病的不能行走的青少年的父母的照顾者生活质量 (QoL) 和夜间照顾他们的孩子。

方法：一项基于人口的横断面综合调查，包括成人照顾者 QoL (AC-QoL) 问卷、社会背景和青少年身体状况的测量。分别使用线性和逻辑回归模型探讨了照顾者 QoL 或父母夜间出勤频率与自变量之间的关联。

结果：当父母每晚照顾孩子两次或更长时间 (n = 17/35) 并且自孩子接受无创通气 (NIV) 后的时间更短时，他们认为父母的照顾者 QoL 较低（平均 76.5/120，SD 18.5） . 父母夜间出勤与青少年实际使用 NIV 无关，但更有可能发生在青少年需要帮助才能上床翻身、报告频繁的睡眠不适和更严重的关节挛缩时。

结论：为了优化父母照顾者的 QoL，干预措施必须解决父母夜间出勤频率和青少年睡眠舒适度的问题。