Mothers' depression and health‐related quality of life in neuromuscular diseases: Role of functional independence level of the children

Abstract

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.