Parental perceptions of the informed consent process in pediatric bone marrow transplantation (BMT)
Bibliographic record
Abstract
6123 Background: The validity of informed consent in pediatric bone marrow transplantation (BMT) may be compromised by the complexity of information provided and the emotional duress under which it occurs. Anecdotal evidence suggests parents feel compelled to consent to BMT on behalf of their child. The purpose of this study was: 1. to determine if parents perceive there to be a real/actual choice when consenting to pediatric BMT, 2. to survey parental experience of the informed consent process, and 3. to determine if the informed consent process affects parental hope, anxiety, stress or guilt. Methods: An information package and informed consent document were mailed to 67 English-speaking parents of 34 children who underwent BMT. They were all prepared for transplant by one physician using a standardized template at the IWK Health Centre (Halifax, Nova Scotia, Canada) between 1998 and 2002. Semi-structured interviews were conducted by phone (13) or in person (7). Transcripts were analyzed for common themes by 2 independent reviewers. Results: Twenty parents (12 mothers and 8 fathers) of 12 children consented to participate in the study. This included five parents of three children who had died. Parental participants did not differ from eligible non-participants in indication for transplant, donor source, major complications, or death rates for their children. All subjects reported feeling they had no personal choice but to consent to BMT. Parents denied experiencing external pressure to consent. Subjects felt well prepared for potential side effects and complications; only 2 reported unexpected side effects. Parents did not report retrospectively doubting the informed consent process. All parents would consent to pediatric BMT if in the same position again. Parental hope, stress, guilt and anxiety were not reported to be affected by the informed consent process. Conclusions: Parents do not perceive a personal choice when providing consent for pediatric BMT. Regardless of outcome, parents do not retrospectively question the quality of consent they provided for pediatric BMT nor do they feel that hope, stress, guilt or anxiety are affected by the consent process. No significant financial relationships to disclose.
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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 | 0.038 | 0.105 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.003 | 0.004 |
| Scholarly communication | 0.003 | 0.002 |
| Open science | 0.001 | 0.002 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.002 | 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".