306.6: Parent perspectives about the potential for and process of infant organ donation: Preliminary findings from a co-designed qualitative study.
Bibliographic record
Abstract
Introduction: Despite the potential to shorten waitlists for life-saving transplants, infant organ donation is rare globally. Infant donors (less than one year of age) can reduce waitlist mortality for both infants and children who require size-matched organs like hearts and lungs, and adults who can receive kidney transplants from infant donors. Infants can donate their organs after death by circulatory criteria (DDCC) if the death follows the withdrawal of life-sustaining measures (WLSM). However, donation rates are very low and providers rarely offer organ donation to families facing the death of their infant. However, providers have reported concerns about how to introduce the topic of organ donation without causing additional distress to the family. Understanding bereaved parents’ perspectives on infant organ donation and how this option could be discussed with them is an important first step in guiding practice, but no studies have explored parent perspectives on infant DDCC. Understanding these perspectives is essential to improving family-centred care and donation counselling practices. Method: This study is an ongoing is an interpretive description study to explore parent perspectives on infant organ donation and the process of DDCC in NICUs and PICUs. This study has been co-designed with two parent partners. Parent partners (DJ and JW) have contributed substantially to defining the goals and research questions, designing appropriate recruitment strategies, writing the interview guide, and conducting member checking of findings. We are conducting individual, semi-structured interviews with parents of an infant who has died after a planned WLSM about their perspectives about the potential for and process of infant DDCC. Data analysis is an iterative and evolving process involving in vivo and then axial coding, merging codes into categories and categories into higher-level themes. Results: Parent partners have contributed meaningfully to the design of the study. Preliminary results from interviews will be available by the time of the conference. Conclusion: This co-designed interpretive description study seeks to illuminate bereaved parent perspectives on infant organ donation and the process of DDCC. By involving parent partners throughout, the study prioritizes family-centered research. Findings will inform donation counseling practices and policies that align more closely with family needs and values in NICU and PICU settings. The collaborative approach offers a model for meaningful parent engagement in sensitive pediatric research. Canadian Institutes for Health Research.
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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 | 0.021 | 0.034 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.006 | 0.005 |
| Scholarly communication | 0.004 | 0.005 |
| Open science | 0.002 | 0.004 |
| Research integrity | 0.002 | 0.004 |
| 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".