“It Would Be All-Consuming”: Community Parents' Perceptions of the Pediatric Intensive Care Unit

Abstract

Parents of children hospitalized in the pediatric intensive care unit (PICU) may have expectations which could contribute to their emotional experiences both during and after hospitalization. This study aimed to evaluate community parents' knowledge and perceptions of the PICU to enhance understanding of preexisting concerns that may influence PICU experiences. English-speaking parents who had a child between the ages of 6 and 12 years old participated. Participants (n = 211) were mostly female (77%), white (72%), and married (72%). Participants completed an online survey regarding demographics and PICU knowledge. Participants were randomized to read a vignette in which a friend disclosed their child's PICU hospitalization either due to surgery, an accident, or chronic health condition. After reading the vignette, participants reported on the expected length of stay (LOS), survival expectations, and expected level of distress. Parents responded to open-ended questions regarding anticipated stressors, parent needs, and PICU resources. Parents overestimated the LOS and underestimated the survival rate. They expected PICU hospitalization to be highly distressing, primarily due to concerns about their hospitalized child, and that parents would need and have emotional support available to them. Parents may come into the PICU with preexisting concerns regarding medical outcomes. It is important that PICU providers assess for and address any parent misperceptions about their child's illness immediately upon admission and frequently throughout hospitalization. It is important to offer and encourage the use of psychosocial support services.