Function over diagnoses: parents of extremely preterm infants give recommendations to clinicians about their information needs
Bibliographic record
Abstract
OBJECTIVES: Extremely preterm children may have a prolonged neonatal intensive care unit (NICU) stay. Their parents interact with clinicians both before and after birth. There is little information about parental satisfaction with the information received and what they would want to improve. The objective of this study was to explore parental perspectives regarding their information needs. METHODS: Over 1 year, parents of children born at <29 weeks' gestational age (GA), who were aged between 18 months and 7 years old and came for their follow-up visit were invited to participate. They were asked to answer this question in their own words: "Knowing what you know now, what do you wish doctors would have told you about prematurity before and/or after your child's birth?" Mixed method analysis included thematic analysis performed by a multidisciplinary group, including parents, and logistic regression to compare parental responses. RESULTS: Among parents (n=248, 98% of parents coming to follow-up), 45% were satisfied. When parents had recommendations, the main themes invoked improving communication about (1) preparing for discharge and life after the NICU in a stepwise, personalised and practical manner (40%), (2) more practical and functional information about being a parent in the NICU during the whole clinical trajectory (35%) and (3) more optimistic conversations with clinicians about the function of babies/families (as opposed to diagnoses) (26%). CONCLUSION: Although half the parents are satisfied with the information received, many recommended improvements in clinician-parent communication, mainly to make it more accessible, personalised, positive and practical.
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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 | 0.007 | 0.037 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.001 | 0.001 |
| Scholarly communication | 0.001 | 0.002 |
| Open science | 0.001 | 0.002 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.003 | 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".