A survey of caregiver preferences regarding research participation in the paediatric emergency department
Bibliographic record
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).
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.010 | 0.021 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.002 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.002 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".