Modifiers of perceived stress in caregivers of children with Sturge-Weber syndrome: a cross-sectional, single-site study.

Background: Sturge-Weber syndrome (SWS), more commonly known as encephalotrigeminal angiomatosis, is characterised by extensive vascular malformations in the face, head, and trunk and glaucoma-induced optic nerve damage, typically on one side, but sometimes involving both sides of the body. As the main caregivers of patients with SWS, caregivers must invest more patience and time into long-term illness and life care. Caregivers' psychological health, which has been receiving increasing attention from scholars. This study aimed to investigate the status and influencing factors of perceived stress among caregivers of children with SWS and provide a theoretical basis for proposing effective intervention measures. Methods: A total of 105 caregivers of children with SWS treated at a hospital in China were surveyed using general demographic data, the Perceived Stress Scale (PSS-4), the Generalised Anxiety Disorder-7 (GAD-7) Scale, the Patient Health Questionnaire-2 (PHQ-2), and the Simplified Coping Style Questionnaire (SCSQ). Results: Caregivers' mean total perceived stress score was 7.52±2.14 points. XGBoost and multiple linear regression models were used to analyze the predictors of perceived stress in caregivers of children with SWS and their significance in explaining the variance in perceived stress. The main influencing factors identified were positive coping strategie, anxiety, depression, educational level, child's gender, perceived disease severity, and methods for detecting eye diseases. Conclusions: Perceived stress among caregivers of children with SWS is influenced by multiple factors. Healthcare professionals should pay attention to these factors and develop effective interventions to reduce caregivers' perceived stress, promote their physical and mental health, enabling them to provide better care for their children.