BACKGROUND: There is a paucity of information about parental perceptions of clinical research in children, particularly in the emergency department (ED) setting. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.
BACKGROUND: There is a paucity of information about parental perceptions of clinical research in children, particularly in the emergency department (ED) setting. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.
Authors: Mary Jane Welch; Rachel Lally; Jennifer E Miller; Stephanie Pittman; Lynda Brodsky; Arthur L Caplan; Gina Uhlenbrauck; Darcy M Louzao; James H Fischer; Benjamin Wilfond Journal: Clin Trials Date: 2015-09-15 Impact factor: 2.486