Hatzmann Janneke, Maurice-Stam Heleen, Heymans Hugo S A, Grootenhuis Martha A
Psycho Social Department, Emma Children's Hospital, Academic Medical Center, University of Amsterdam, The Netherlands.
Health Qual Life Outcomes. 2009 Jul 28;7:72. doi: 10.1186/1477-7525-7-72.
Parents of chronically ill children are at risk for a lower Health Related Quality of Life (HRQoL). Insight in the dynamics of factors influencing parental HRQoL is necessary for development of interventions. Aim of the present study was to explore the influence of demographic and disease related factors on parental HRQoL, mediated by employment, income, leisure time, holiday and emotional support in a comprehensive model.
In a cross-sectional design, 543 parents of chronically ill children completed questionnaires. A conceptual model of parental HRQoL was developed. Structural equation modeling was performed to explore the relations in the conceptual model, and to test if the model fitted the data.
The model fitted the data closely (CHISQ(14) = 11.37, p = 0.66; RMSEA = 0.0, 90%CI [0.00;0.034]. The effect of socio-demographic and medical data on HRQoL was mediated by days on holiday (MCS: beta = .21) and emotional support (PCS: beta = .14; MCS: beta = .28). Also, female gender (beta = -.10), age (beta = .10), being chronically ill as a parent (beta = -.34), and care dependency of the child (beta = -.14; beta = -.15) were directly related to parental HRQoL.
The final model was slightly different from the conceptual model. Main factors explaining parental HRQoL seemed to be emotional support, care dependency, days on holiday and being chronically ill as a parent. Holiday and emotional support mediated the effect of demographic and disease-related factors on HRQoL. Hours of employment, leisure time and household income did not mediate between background characteristics and HRQoL, contrasting the hypotheses.
慢性病患儿的父母健康相关生活质量（HRQoL）较低。了解影响父母HRQoL的因素动态对于制定干预措施很有必要。本研究的目的是在一个综合模型中探讨人口统计学和疾病相关因素对父母HRQoL的影响，这些影响通过就业、收入、休闲时间、假期和情感支持来介导。
采用横断面设计，543名慢性病患儿的父母完成了问卷调查。构建了父母HRQoL的概念模型。进行结构方程建模以探索概念模型中的关系，并检验模型是否拟合数据。
该模型与数据拟合良好（卡方(14)=11.37，p = 0.66；RMSEA = 0.0，90%CI [0.00;0.034]）。社会人口统计学和医学数据对HRQoL的影响通过假期天数（MCS：β = 0.21）和情感支持（PCS：β = 0.14；MCS：β = 0.28）介导。此外，女性性别（β = -0.10）、年龄（β = 0.10）、父母患有慢性病（β = -0.34）以及孩子的护理依赖程度（β = -0.14；β = -0.15）与父母的HRQoL直接相关。
最终模型与概念模型略有不同。解释父母HRQoL的主要因素似乎是情感支持、护理依赖程度、假期天数以及父母患有慢性病。假期和情感支持介导了人口统计学和疾病相关因素对HRQoL的影响。就业时长、休闲时间和家庭收入在背景特征和HRQoL之间未起到中介作用，这与假设相反。
