54 Preterm Parents Identified Meaningful Outcomes: Involving Parents in Implementing Change
Notice bibliographique
Résumé
Abstract Background The Canadian Neonatal Follow-Up Network (CNFUN) reports on neurodevelopmental impairments (NDI) in the very preterm population but has never asked parents which outcomes and definitions are meaningful to them. The Parent Voices group conducted four studies which showed differences between parents and CNFUN perspectives on definitions, severity, composite outcomes, which outcomes, and the need to report positive as well as adverse outcomes. Disseminating and implementing change based on these results is the next essential step. Objectives To create consensus statements to guide evidence-based change. Design/Methods Using a modified Delphi method, Parent Voices results were reviewed and discussed with parents, clinicians and researchers in a virtual workshop in Oct 2021. The discussion was analyzed qualitatively to create statements, circulated for feedback, and 80% consensus statements identified by electronic polling. Priority items requiring further work were identified, working groups created, and results presented at a Sept 2022 workshop. Results In the 2021 workshop, 17 consensus statements were identified (7 from the Parent Voices results, 5 from the discussion, and 5 were out of scope). Actionable statements (n=11, Table 1) and items needing further work (n=6, Table 2) were identified and progress was made (Tables 1 and 2). To identify how to measure 7 outcomes which parents and stakeholders identified as important (child well-being, quality of life, socioemotional and behavioural, respiratory, feeding, sleeping, and caregiver well-being), working groups reviewed literature and made recommendations for minimal dataset and funded research at a virtual presentation with parent, clinicians, and researchers in Sept 2022. In the summer of 2022, the Canadian Premature Babies Foundation (CPBF), Parent-EPIQ team members and summer students disseminated the Parent Voices results to lay stakeholder groups via CPBF blogs and webinars. They also pursued a project identified in the 2021 workshop to educate parents about the role of Neonatal Follow-Up Programs using infographics and information sheets. Conclusion We have successfully collaborated with parent partners to implement the actionable results from our Parent Voices Project, and have a process to implement change when further work is required. Involving parents in research, knowledge dissemination and implementation can lead to changes that accurately represent the priorities of families.
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 distillée sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Apprise à partir de 10 348 étiquettes directes de Codex et de 10 348 étiquettes directes de Gemma. Le mode candidate est l'union des têtes enseignantes seuillées; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont ni des étiquettes humaines ni des étiquettes directes de modèles de pointe.
Scores Codex et Gemma par catégorie
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,009 | 0,002 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,001 | 0,003 |
| Études des sciences et des technologies | 0,001 | 0,000 |
| Communication savante | 0,000 | 0,000 |
| Science ouverte | 0,001 | 0,001 |
| Intégrité de la recherche | 0,000 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,000 | 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 tête enseignante, 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 ».