10 Parental perspectives on the health and development of their child with surgical congenital cardiopathy
Notice bibliographique
Résumé
Abstract Background Many paediatric centers now offer neurodevelopmental follow-up for children with surgical congenital heart disease (CHD). These patients undergo multiple procedures, extended hospital stays, and increased risks of adverse outcomes. Similar to neonatal follow-up, cardiac follow-up programs use validated assessments and physical exams to aid early detection and intervention. However, parental perspectives regarding their child’s outcomes and needs have not been explored. Objectives To examine parental perspectives about the health and development of their child with surgical CHD Design/Methods Over the course of 2023 and 2024 in a single academic center, parents of children of preschool age with surgical CHD presenting for follow-up were interviewed. They were asked two questions: “In general, how would you rate the physical health of your child with congenital heart disease, using the scale below: 0 very poor to 10 excellent?” and “If you could improve up to 2 things about your child's health and/or neurodevelopment, what would they be?” Responses were analyzed using mixed methods. Results 100 answered the questionnaire On average, parents rated their child’s physical health to be 9/10 (range 3-10/10, median 9/10). Main themes invoked about areas for improvement were developmental outcomes (57%): “for him to meet the typical milestones- grasp and eventually speak”; cardiovascular health and overall medical fragility (55%):“ I want him to improve his breathing capacity”; and never having CHD (21%): “that she wasn't born with the heart defect she was born with”. Twenty-four percent did not wish to improve anything: “I think he is perfect just the way he is”. Recurrent sub-themes for improvement were: language/communication (26%) :” improving her speech and understanding of communication”, motor (16%) and cognitive/behavioral (13%). As for physical health, the main area for improvement were heart and lung function (28%), growth and nutrition issues (14%) and being prone to infection (4%). Conclusion Parental perspective on the health of their child with surgical CHD is generally positive. Main areas of concern are development, cardiac and respiratory health; although development is prioritized during cardiac follow-up programs . Parents also discuss the importance of nutrition and gastro-intestinal health. These perspectives help inform healthcare professionals on how to tailor follow-up services to families’ needs.
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 | 0,002 | 0,007 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,001 | 0,000 |
| Études des sciences et des technologies | 0,002 | 0,001 |
| Communication savante | 0,001 | 0,001 |
| Science ouverte | 0,000 | 0,001 |
| Intégrité de la recherche | 0,000 | 0,001 |
| 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 ».