Informed Consent in Pediatric Bone Marrow Transplantation: The Parental Experience.
Notice bibliographique
Résumé
Abstract Background Four key challenges have been identified for the informed consent process in pediatric Bone Marrow Transplantation (BMT): 1. The information disclosed is complex, 2. parents are often under significant emotional duress, 3. life or death circumstances are perceived, and 4. there is often significant time pressure. The purposes of this study were A. to survey parental perceptions of the validity of the informed consent provided for their child’s BMT, B. to determine if the quality of the consent influenced hope, guilt, anxiety or stress. Methods An information package and informed consent document were mailed to 67 English-speaking parents whose children underwent BMT and were prepared for transplant by one physician using a standardized template at the IWK Health Centre (Halifax, Nova Scotia, Canada) between 1998 and 2002. These parents represented the guardians of 36 children who had undergone BMT. Semi-structured interviews were conducted by phone or in person and audiotaped. Transcripts were independently analyzed for common themes by 2 reviewers. Results Twenty parents (12 mothers and 8 fathers) of 12 children consented to participate in the study. Participants did not differ from eligible non-participants in indication for transplant, donor source, major complications, or death rates. Elements of consent: (A) Freedom to Choose. All parents reported feeling personally compelled to consent, but denied external pressure to do so. All participants, including those whose children had died (n=5), would consent to BMT again. No parent reported questioning the validity of the informed consent for BMT. (B) Capacity to Understand. A minority of parents (n=5, 25%) reported diminished ability to understand the process, usually related to emotional duress at the time of consent. (C) Adequacy of Information. Most parents (n=15, 75%) stated directly that they felt fully prepared for the potential side effects of BMT. However, there were four reports of unexpected severity of side effects of therapy [excess hair growth (n=1), bleeding (n=1), and fatigue (n=2)] and 1 of an unexpected side effect (pneumonitis). Emotional impact: 7 parents (35%) reported marked hopelessness during the disclosure process, although all parents expressed that they did not want false hope. 14 parents reported a direct relationship between hope and objective test results (ie daily complete blood count). Parents (n=18) reported peak stress leading up to BMT and the first 6 months post BMT. 18 parents noted ongoing, significant, stress at the time of the study, despite length of time from BMT (median 39 months). One parent reported experiencing guilt. All parents denied experiencing second thoughts with respect to the decision to consent. 8 parents reported heightened health vigilance for their child and increased stress with the appearance of minor health concerns (ie mosquito bites, bruises), or at the time of recheck, despite length of time post BMT. In addition to geographic isolation, all parents reported social isolation, sometimes severe, at the time of, and following BMT. Conclusions Despite significant barriers to informed consent, no parent reported questioning the validity of the consent for BMT for their child. Hopelessness, social isolation and continuing high levels of stress related to the health of their child are frequently reported. Consent conferences and ongoing follow up should proactively address these issues for parents of children undertaking BMT.
Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.
Comment cette classification a été obtenuedéplier
Prédiction machine sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,050 | 0,132 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,001 | 0,001 |
| Études des sciences et des technologies | 0,004 | 0,009 |
| Communication savante | 0,003 | 0,004 |
| Science ouverte | 0,001 | 0,004 |
| Intégrité de la recherche | 0,002 | 0,004 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,002 | 0,000 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».