Validity and consequence of informed consent in pediatric bone marrow transplantation: The parental experience
Bibliographic record
Abstract
BACKGROUND: Conditions supporting a high quality of consent for pediatric bone marrow transplantation (BMT) are suboptimal given the complexity of the procedure, lack of options, and parent emotional duress. We studied if parents perceived choice when consenting to BMT, if they felt the consent provided was valid, and how the consent process affected them. METHODS: Telephone or face-to-face interviews were recorded using a semi-structured interview outline. Interview transcripts were anonymized, and independently analyzed by three reviewers. RESULTS: Twenty parents of twelve children participated, including five bereaved parents. There were no differences in patient transplant characteristics between the eligible and study groups. Divorced or separated parents were underrepresented in the participant group. Fifteen parents felt personally compelled to consent; most (18) denied feeling external medical pressure to do so. All parents felt their consent was valid and most reported adequate levels of freedom, capacity, and information. Expectations formulated during the consent process strongly influenced parents' experience post-BMT. Good communication during consent contributed to trust and therapeutic alliance with physicians following BMT. Late parental stress and anxiety were periodic, but very high in some families. CONCLUSIONS: Parents feel consent for pediatric BMT is valid, despite feeling personally compelled to consent. Strategies aimed at nurturing hope and realistic expectations may assist in improving the consent process, while diminishing long-term stressors.
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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 | 0.029 | 0.109 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.000 |
| Science and technology studies | 0.003 | 0.006 |
| Scholarly communication | 0.002 | 0.002 |
| Open science | 0.001 | 0.003 |
| 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".