Quality of life of cerebral palsy patients and their caregivers: A cross sectional study in a rehabilitation center Khartoum-Sudan (2014 – 2015)

摘要

Background: Cerebral palsy (CP) is group of disorders characterized by long-term disabilities that affect the quality of life (QoL) of both patients and those caring for them. Objective: The objective of this study was to measure the QoL of CP patients and their caregivers and determine the factors affecting both of them. Methods: This was a cross-sectional facility-based study. 65 caregivers of children with CP aged 4–18 years completed a self-structured questionnaire. Descriptives of the samples were displayed, and logistic regression was used in the analysis. Results: The scores of overall QoL of both children and caregivers were low, however, variations were observed among different domains. Both health-related and sociodemographic factors were found to affect the QoL of children and caregivers. The increase in the degree of disability and presence of complications decreased the children QoL while the availability of health insurance improved it. Whereas the QoL of the caregiver was affected by his/her occupation, the degree of child disability did not affect it. Conclusions: This study showed that many feasible changes can be adopted to improve the QoL of CP patients and their caregivers.