Parents' perceptions of the quality of pediatric and perinatal end-of-life care.
Bibliographic record
Abstract
OBJECTIVE: The purpose of this study was to describe the quality of care provided before, at the time of, and following the death of an infant, child, or adolescent from the perspective of the parent, using a newly developed survey. SAMPLE AND METHODS: Parents were asked to participate in this study if they experienced a stillbirth or death of an infant/child/youth between 12 and 24 months prior to the beginning of the study. Thirty-eight families completed the survey with one of the researchers over the telephone or in person. Survey questions asked parents to report on the care received rather than rate how satisfied they were with care. RESULTS: Parents were reluctant to report negative occurrences in care they received, yet, when questioned further, nearly every parent could relate a particular event or person who had a negative impact on their experience. Parents identified communication between health professionals, relationships with health professionals, care at the time of death, and bereavement follow-up as problematic areas. CONCLUSION: There is room for improvement in the end-of-life care provided to infants, children and youth, and their families.
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 | 0.003 | 0.013 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.000 | 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) | 0.001 | 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".