Paediatric patient family engagement with clinical research at a tertiary care paediatric hospital
Bibliographic record
Abstract
BACKGROUND: Subject recruitment is essential for conducting clinical research; however, there are very few studies evaluating research uptake by families in a paediatric setting. OBJECTIVES: To determine how frequently paediatric patients and their families receiving care at a tertiary paediatric hospital participated in research. The secondary objectives were to explore factors that influence patient families' decisions to participate in research and how they perceived their experiences. METHODS: A cross-sectional study surveying families of children receiving care in a sample of clinical areas at a tertiary care paediatric hospital in British Columbia was conducted. A self-administered questionnaire was used, and was facilitated by trained interviewers. Descriptive statistics were used to report the proportion of patient families that have previously been invited to participate in research and, among these, the proportion who had agreed to participate. Patient families' perceptions of research and their past experiences therein were also reported. RESULTS: A total of 657 families were approached, of which 543 were enrolled (82.6% response rate). Among the 439 families that had visited the hospital previously, 114 (26.0%) had been invited to participate in research and 99 (87%) had consented to participate. Of these 99 families, only one had a negative experience, and 84 (85%) of these participant families were at least somewhat likely to participate in research again in the future. CONCLUSIONS: Only one-quarter of families that had previously visited the hospital had been invited to participate in a research project. Of the families approached previously, there was a high rate of participation and willingness to participate in future research.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
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 | 0.022 | 0.042 |
| Meta-epidemiology (narrow) | 0.000 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.006 | 0.003 |
| Scholarly communication | 0.003 | 0.002 |
| Open science | 0.002 | 0.005 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.016 | 0.001 |
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".