Parental Perceptions of Clinical Research in the Pediatric Emergency Department

Abstract

There is a paucity of information about parental perceptions of clinical research in children, particularly in the emergency department (ED) setting. Parents accompanying their child to the ED completed a self-administered survey gauging perceptions of research and willingness to enroll a child in a clinical research study. Factor analysis was used to correlate survey responses into domains representing parents' feeling about participation in a research study. Logistic regression was used to assess the predictors of caregivers' amenability to research participation for their child. Three hundred eighty-eight parents were enrolled. Most subjects were willing to enroll their child in a study involving follow-up after ED care (87%) and collection of a urine or saliva sample (79% and 81%, respectively) and extant blood (69%). Fewer were amenable to studies that involve an investigational medication (26%) or additional phlebotomy (27%). Overall, more than 90% of parents felt that research was needed to help other children and was conducted in a way that is morally right, and 25% felt that research may compromise their child's confidentiality. Factor analyses yielded 3 factors that accounted for the variance across the survey questions. Patient and parent demographics, including the patient's triage acuity level, were not associated with willingness to participate in research. Most parents are amenable to having their child participate in a research study in the ED setting. Most parents share a sense of altruism that research is needed to help children, and this belief is predictive of willingness to participate in a research study.