Illness uncertainty, burden, and capacity among caregivers of children with chronic uveitis: A stress and coping theory perspective

The aim was to determine the relationships among illness uncertainty and caregiver burden and capacity in caregivers of children with chronic uveitis and to determine whether caregiver burden plays a mediating role in the relationship between illness uncertainty and caregiver capacity. This was a cross-sectional study. The sample included 134 caregivers of children with chronic uveitis. All paper questionnaires were collected at a tertiary-level eye hospital in Wenzhou Province, China. Demographic and clinical characteristics and the Parents' Perception of Uncertainty Scale (PPUS), Zarit Burden Interview (ZBI) and Family Caregiver Task Inventory (FCTI) scores were determined. IBM SPSS 26.0, AMOS 26.0 and GraphPad Prism 9.0.0 were used for figure preparation and statistical analyses. Both the PPUS score (r=0.725, P<0.001) and ZBI score (r=0.756, P<0.001) were positively correlated with the FCTI score, indicating that higher levels of illness uncertainty and caregiver burden was significantly correlated with lower caregiver capacity. Illness uncertainty and caregiver burden (both P<0.001) were found to be influencing factors of caregiver capacity. Furthermore, the effect of illness uncertainty on caregiver capacity was partly mediated by caregiver burden. The indirect effect was 0.366 (P=0.012; 95% confidence interval: 0.102, 0.879), accounting for 40.13% of the total effect. Our findings revealed that both illness uncertainty and caregiver burden may reduce caregiver capacity among caregivers of children with chronic uveitis. Caregiver burden mediated the relationship between illness uncertainty and caregiver capacity in this population. Therefore, this study alerts health care providers to pay attention to illness uncertainty and caregiver burden, as these factors can help in developing effective interventions to improve caregiver capacity in clinical practice.