Parental perspectives on clinical outcomes in a definitive cRCT
infections
SECONDARY INFECTION, EVENTS, INFECTIONS, COMPLICATIONS
Parents were asked to review the list of outcomes that had been sent to them prior to the interview. In the few cases in which parents did not have access to the materials, a definition of each outcome was read to them, including an explanation about why it is important to explore parents’ perspectives about important outcomes (Fig. Parent Centred Outcomes for the proposed trial.Most parents hoped that their child’s quality of life will improve i.e. “Most parents prioritised outcomes that were included in the list they were provided with, such as reduced likelihood of complications or infections, ““So, from a parent’s perspective, I’m hoping that this study drives an outcome where secondary infections are less common in children receiving intensive care treatment.” (P07, father, SDD)Parents were then asked to rank the outcomes listed order of importance from the list provided. The top prioritised outcomes can be seen in Box 1. Survival and health complication/adverse events were ranked joint as most important for the majority of parents.Although many did not initially mention it, the majority of parents, when prompted, considered survival an important outcome. “Other outcomes associated with health complications included infections acquired in the ICU, tolerance of the intervention, the number of specific treatments their child received, and looking and behaving like normal self, i.e., an overall feeling of return to health or normality.