Parental quality of life and its predictors in Jordanian families with children with cerebral palsy

约旦脑瘫儿童家庭中父母的生活质量及其预测因素

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Abstract

BACKGROUND: The lifelong care responsibilities associated with cerebral palsy (CP) may place significant physical and psychological burdens on parents, which might hinder their quality of life (QOL). Despite their importance, factors affecting parents' QOL in CP cases remain understudied globally, including Jordan. This study aimed to assess the QOL of parents of children with CP and investigate its predictors. METHODS: Sociodemographic factors were evaluated in this cross-sectional study for both the parents and their children with CP. The parents' QOL and musculoskeletal pain were assessed using the Beach Centre Family Quality of Life Scale (BCFQOL) and the Nordic Musculoskeletal Questionnaire. For a comprehensive assessment of psychological well-being and sleep quality, the Depression Anxiety Stress Scale and the Pittsburgh Sleep Quality Index were administered. The significant predictors of parents' QOL were determined using multivariable linear regression analysis. RESULTS: 150 parents of children with CP participated in this study. Participants reported a moderate to high overall level of satisfaction with BCFQOL. The highest satisfaction was observed in the family interaction and parenting, while the lowest was in emotional well-being. The regression model explained approximately 35% of the variance in parents' QOL (R²=0.35, F=5.568, p<0.001). Factors significantly predicting higher levels of parents' QOL were absence of child mental health symptoms (β=0.176 (95% CI 0.611 to 9.340), p=0.026), parents who are not smokers (β=0.2 (95% CI 1.468 to 11.608), p=0.012) and parents who do not report pain in the past 12 months (β=0.184 (95% CI 1.038 to 12.303), p=0.021). CONCLUSIONS: Parents of children with CP showed acceptable levels of QOL. A higher level of QOL was associated with the absence of child mental health symptoms, and parents who are not smokers or do not report pain. The findings highlight the need for mental health interventions, healthier habits and musculoskeletal pain management to improve parents' well-being.

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