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Parental perceptions of clinical research in the pediatric emergency department
Lucy E Abernethy1, Elizabeth L Paulsen, Michael C Monuteaux
1Division of Emergency Medicine, Boston Children's Hospital, Boston, MA 02115, USA.
Insights
Most parents are willing to enroll children in emergency department (ED) clinical research, especially for studies involving sample collection. Altruism drives willingness, though some concerns about confidentiality exist.
Area of Science:
- Pediatric Emergency Medicine
- Clinical Research Ethics
- Parental Perceptions
Background:
- Limited data exists on parental views of pediatric clinical research in emergency departments (EDs).
- Understanding these perceptions is crucial for effective research recruitment.
Purpose of the Study:
- To assess parental perceptions of clinical research involving children in the ED.
- To determine parental willingness to enroll children in ED research studies.
- To identify factors influencing this willingness.
Main Methods:
- A survey was administered to parents accompanying their child to the ED.
- Factor analysis explored parental feelings about research participation.
- Logistic regression identified predictors of willingness to enroll a child.
Main Results:
- Most parents (87%) would enroll their child in studies with follow-up care and sample collection (urine, saliva, blood).
- Fewer parents agreed to studies involving investigational medications (26%) or additional blood draws (27%).
- Over 90% believed research is necessary and morally sound, but 25% worried about confidentiality.
Conclusions:
- The majority of parents are receptive to pediatric clinical research participation within the ED setting.
- Parental altruism and belief in the necessity of research are key predictors of willingness to participate.
- Addressing confidentiality concerns may further enhance recruitment.
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.
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