Yilmaz Oznur, Yildirim Sibel Aksu, Oksüz Cigdem, Atay Sibel, Turan Ebru
Department of Physical Therapy and Rehabilitation, Hacettepe University Faculty of Health Science, Samanpazari, Ankara, Turkey.
Pediatr Int. 2010 Aug;52(4):648-52. doi: 10.1111/j.1442-200X.2010.03094.x.
In the literature there have been studies about quality of life of parents who have children with chronic diseases. Most of these studies have focused on the stress of parents of children with neuromuscular disease (NMD), and there was no evidence to support hypothesized relationships between caregiving demands and health-related quality of life (HRQOL). The aim of the present study was therefore to evaluate the relations between maternal depression and HRQOL and functional limitations of the children with NMD.
Forty children with a diagnosis of NMD and their mothers were included in the study. HRQOL of the mothers was assessed on the Turkish version of the Nottingham Health Profile (NHP); potential cases of depressive illness were identified on Beck Depression Inventory (BDI); and Wee-Functional Independence Measure (Wee-FIM) was used to evaluate of functional independence level of the children.
It was found that mean total NHP score of the mothers was moderately correlated with the total FIM score and sphincter control of the child, and weakly correlated with the locomotion of the child (P < 0.001). There was moderate correlation between mothers' social isolation and children's sphincter control, social integration and total Wee-FIM score and a weak correlation between mobility and communication scores (P < 0.001). In contrast there was no correlation between BDI scores of mothers and Wee-FIM scores of children (P > 0.05).
The functional level of children with NMD is one of the factors that affect the quality of life of mothers.
文献中已有关于患有慢性病儿童的父母生活质量的研究。这些研究大多聚焦于神经肌肉疾病（NMD）患儿父母的压力，且没有证据支持照顾需求与健康相关生活质量（HRQOL）之间的假设关系。因此，本研究的目的是评估母亲抑郁与HRQOL以及NMD患儿功能受限之间的关系。
本研究纳入了40名被诊断为NMD的儿童及其母亲。母亲的HRQOL通过诺丁汉健康量表（NHP）的土耳其语版本进行评估；通过贝克抑郁量表（BDI）识别潜在的抑郁症病例；并使用儿童功能独立性测量量表（Wee-FIM）评估儿童的功能独立水平。
发现母亲的NHP总均分与儿童的FIM总分及括约肌控制呈中度相关，与儿童的运动能力呈弱相关（P < 0.001）。母亲的社会隔离与儿童的括约肌控制、社会融合及Wee-FIM总分之间存在中度相关，与活动和沟通得分之间存在弱相关（P < 0.001）。相比之下，母亲的BDI得分与儿童的Wee-FIM得分之间无相关性（P > 0.05）。
NMD患儿的功能水平是影响母亲生活质量的因素之一。
