Current situation and influencing factors of disease uncertainty in parents of children with Sturge-Weber syndrome

Abstract Purpose To investigate the current situation and influencing factors of disease uncertainty in parents of children with Sturge-Weber syndrome (SWS). Methods A total of 105 parents of children with SWS completed a self-designed general information questionnaire, generalized anxiety questionnaire (GAD−7), patient health questionnaire (PHQ−2), stress perception scale (PSS−4), simple coping scale (SCSQ) and disease uncertainty scale (PPUS). Results The total uncertainty score of parents of children with SWS was 79.07 ± 13.24, and the average item score was 2.82 ± 0.47. Multiple linear regression analysis showed that anxiety and simple coping were the main influencing factors of parents' disease uncertainty in children with SWS (P < 0.05). Conclusions The parents of children with SWS have a high level of disease uncertainty. Medical staff should pay attention to the source of parents' disease uncertainty and carry out targeted interventions, which are of great importance in reducing parents' disease uncertainty.