21 Communicating Sensitive Information - An Exploration of Parental Perspectives on Prognostication of High Risk Infants
Notice bibliographique
Résumé
Abstract Background Preterm infants are at high risk of experiencing a range of impairments that may contribute to long-term challenges such as neurocognitive deficits. Physicians are often expected to give an outlook on future developmental outcomes of high risk infants, often before sufficient time has elapsed to observe whether that particular child will demonstrate neurologic recovery from the initial injury. Clinicians often struggle with communicating this information, especially a poor prognosis because of the worry about how these conversations affect families and their future expectations of the child. Objectives Our aim was to capture parents’ retrospective perception of how their infant’s prognosis was communicated to them during their NICU stay. Design/Methods Semi-structured interviews were conducted over the phone with parents of former preterm infants with a birthweight below 1500 grams or parents of term infants who have sustained HIE requiring cooling. Parents were invited to participate when their child was between 12-36 months old at the time of the interview, so that parents would be able to have a sense of their child’s development and possible impairments. The data was analyzed thematically, with particular focus around the discourse of communication and prognostication. Results Twenty-three interviews were conducted, 20 with the biological mother, 2 with both biological parents, and 1 with the biological father. The average length of the interviews was 30 minutes. The main themes that recurred in the interviews include parental loss of control, needing to prepare for the unexpected, the value of shared decision making between the health care practitioners and parents, recognition and conveyance of uncertainty by the physician, and the importance of celebrating the present. Above all, a recurring theme mentioned by the majority of interviewees was the power of hope. While wanting to receive transparent and honest updates, parents felt strongly that giving them realistic hope was of utmost importance. Conclusion Although clinicians often feel pressured to deliver answers, parents found it helpful when clinicians acknowledged and explained the uncertainty that surrounds prognostication. While healthcare providers may feel the need to prepare parents for the worst, the importance of balancing this information with hope and positivity is what families remember and value years after the prognosis was given.
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 | 0,021 | 0,040 |
| Méta-épidémiologie (sens strict) | 0,001 | 0,001 |
| Méta-épidémiologie (sens large) | 0,001 | 0,001 |
| Bibliométrie | 0,001 | 0,001 |
| Études des sciences et des technologies | 0,009 | 0,008 |
| Communication savante | 0,007 | 0,005 |
| Science ouverte | 0,001 | 0,007 |
| Intégrité de la recherche | 0,002 | 0,005 |
| 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 ».