Caregiver burden and related factors in caregivers of patients with childhood-onset systemic lupus erythematosus

Having a child with a chronic illness is a source of stress for the whole family, especially the primary caregiver. The aim of this study was to evaluate the associations between caregiver burden and both the caregiver's and child's psychological symptoms in a cohort of children with systemic lupus erythematosus (SLE).Thirty-four patients (aged 9-18 years) with childhood-onset SLE and their caregivers participated in this study. The control group was composed of healthy children and their caregivers. Questionnaires were used to evaluate caregiver burden and the psychological status of parents and children and adolescents with and without SLE.No significant difference was found between the study and control groups for caregiver burden, anxiety and depression in parents, and psychological status in children. Caregiver burden was positively correlated with parent's depression, anxiety, and behavioral and peer problems of the children, and it was negatively correlated with the children's prosocial behaviors. According to regression analyses, the parents' depression and children's peer relationship had a positive effect on caregiver burden scores.Physicians should be aware of the presence of psychological symptoms in patients with childhood-onset SLE and their caregivers because it can affect caregiver burden and the caregiver's psychological state. Key points •Caregiver burden was positively correlated with parent's depression and anxiety. •Caregiver burden was positively correlated with children's behavioral and peer problems. •Caregiver burden was negatively correlated with child's prosocial behaviors.