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

Background/Purpose. While hospitalization in the Pediatric Intensive Care Unit (PICU) is a stressful experience for children and families, the average length of stay (LOS) is 5 days with 50% discharged within two days, and the mortality rate is about 2%. Despite this relatively short stay and low prevalence of death, 25-60% of PICU parents experience clinical symptoms of traumatic stress, anxiety, and depression. Previous research suggests that subjective perceptions of medical events impact parental distress in the PICU. Therefore, pre-existing expectations about the PICU may impact emotional adjustment. The present study aimed to characterize community parents' perceptions of the PICU to identify potential misconceptions. Methods. Community parents (n=211; 77% Female, 72% White) of 6-12-year-old children completed an online survey. Participants reported on their medical background and previous ICU experiences. They were randomly assigned to one of three vignettes in which a friend disclosed their child’s PICU hospitalization either due to Surgery, an Accident, or Chronic Health Condition. Participants reported expected LOS, parent distress level (0-100), and likelihood of the child’s survival (0-100). They responded to open-ended questions regarding expectations about PICU admission which were coded using the Delphi method. Independent t-tests and a one-way ANOVA evaluated group differences in distress and survival expectations. Results. Participants overestimated LOS, with 11% estimating 1-2 days, 55% one week, and 34% one month or more. On average, participants underestimated survival rates (M=78.9, SD=12.7), with no difference based on vignette condition (p=.833). Participants expected parents to be highly distressed and experience significantly more distress when the child was reportedly in the PICU due to an accident (M=94.1, SD=10.54) than for a chronic health condition (M=87.1, SD=20.2), F(2, 209)=3.73, p=.026. There were no differences in survival or distress expectations related to previous PICU experience or employment in the medical field (p>.436). Qualitative results indicated the child’s well-being, home-life balance, and work/financial concerns were most frequently cited as likely stressors (Table 1). Participants most frequently anticipated needing emotional support (Table 2) and would primarily provide emotional (55%) and practical (51%; e.g., providing meals and childcare) support to PICU parents. Conclusion. Results suggest that when considering a hypothetical PICU admission, community parents over-estimate LOS and likelihood of death, regardless of previous PICU experience or medical field employment. Therefore, medical providers should provide education that corrects overly negative expectations at admission. Previous research suggests that higher levels of social support mitigate poor parental psychological outcomes, and the present study indicates that parents were frequently willing to provide emotional and practical support to a friend with a child in the PICU. Therefore, providers should encourage PICU parents to seek support from friends and family in managing stress related to their child’s well-being and in fulfilling practical needs external to hospitalization.