139 Evaluating a parent handbook for shared decision making for extremely preterm infants
Bibliographic record
Abstract
The standard of care in Canada for infants born < 22 weeks gestational age (GA) is palliative care (PC) while for infants > 26 weeks GA, it is early intensive care (EIC). However, between 22 + 0 and 25 + 6 weeks GA, there is a “gray zone” where both PC and EIC are reasonable options. A shared decision-making (SDM) approach for these difficult decisions is recommended. SDM results in informed decisions based on evidence and family values, in the best interests of the infant. We use a parent handbook, which complements the prenatal counseling session. However, parents of extremely preterm infants have not evaluated the current version of our handbook. Our objective was to answer the research question: how do parents of extremely preterm infants perceive a parent handbook provided during the antenatal counseling process? This qualitative, descriptive study was conducted at a Level III center. We recruited a prospective sample of parents, who were facing anticipated birth at extreme prematurity. An in-person interview was conducted within 48 hours, using a semi-structured interview guide. Interviews were transcribed verbatim and analyzed manually, using constant comparative analysis. Timing: The handbook was given following a neonatal consult, which was described as ideal. Ease of use: The handbook was easy to understand, clearly written and straightforward. Layout and format: The appearance was felt to be inconsequential given the situation. All parents preferred a paper copy to an electronic one. Imagery: Reactions to the photos used were varied; some parents felt frightened, while others felt a sense of comfort. Graphs and tables: Parents unanimously expressed appreciation for a visual representation of data. Content: There was criticism regarding missing imperative data and comparison to the tool used during the antenatal counseling session. The parental perceptions of using a handbook on EPI can be divided into 6 main themes: timing, ease of use, layout/format, imagery, graphs/tables and content. Overall, parents felt the handbook was a useful resource for reputable information. They also felt it was a tool which aided in decision-making. Some parents were satisfied with simple information, which helped them feel less overwhelmed, while others felt the depth of information was insufficient.
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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 | 0.022 | 0.049 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.003 | 0.002 |
| Scholarly communication | 0.003 | 0.002 |
| Open science | 0.001 | 0.003 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.005 | 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".