A survey of caregiver preferences regarding research participation in the paediatric emergency department

Abstract Objectives Emergency department (ED) visits can be stressful for families and can affect caregiver willingness to consent to participating in research. Our objective was to describe when and how caregivers wish to be informed about clinical research during their child’s ED visit. Methods An electronic survey was performed for families presenting to 10 Canadian paediatric EDs. A convenience sample of 1456 caregivers with children aged 0 to 17 years were enrolled. The survey tool was created (with an expert panel) using published methodological guidelines, including item generation/reduction, pre- and pilot-testing, and clinical sensibility assessment. Research-specific questions included the best time to be approached, the breadth of study opportunities presented, and best ways to encourage families to participate. Results Caregivers reported that the best times to be approached regarding research were in the waiting room (45.3%, 653/1441), after physician assessment (39.0%, 562/1441), or just prior to discharge (9.9%, 143/1441). 52.2% (351/672) wanted to hear about all available research studies, while 47.8% (321/672) wanted to be informed of studies relevant only to their child’s condition. Reported best ways to encourage families to participate in research included: incentives (e.g., gift cards/parking passes [31.2%, 230/737]), providing a clear explanation of study intent (30.7%, 226/737), and appealing to altruism (25.4%, 187/737). Conclusions There is wide variability in family preferences for timing of research-related conversations, suggesting that families could be approached in the waiting room, and if that is inconvenient or impractical, they could be offered a deferred conversation (i.e., after physician assessment or prior to discharge).