22 Family-reported experiences for the management of children in palliative care during emergency visits
Notice bibliographique
Résumé
Abstract Background Almost all children receiving care from paediatric palliative care (PPC) teams will visit the emergency department at some point during their illness trajectory, especially for acute unexpected health deterioration. Previous research conducted by the author has shown that emergency providers perceive several barriers to providing high-quality care for these children, including the discomfort with goals of care discussions. The families' perspectives during their ED visits have yet to be explored. Objectives To explore the experiences of families of children followed by a PPC team during their emergency department visits. Design/Methods This is a qualitative study using 15 semi-structured interviews across 3 paediatric hospitals in Canada, from January 2021 to December 2023. Parents of children followed by a paediatric palliative care program were invited to participate if their child had ever presented to the ED during their illness trajectory. Questions aimed to explore what happened before, during and after an ED visit, as well as the overall rating of their experiences. Anonymized one-hour interviews were transcribed verbatim and analysed using thematic analysis to identify emerging themes. Results A total of 14 mothers and 3 fathers participated in the study. All families had access to a healthcare professional prior to coming to the ED, and most of the children visited the ED < 2 times per month. Main themes emerging from the interviews include the universal desire to avoid any ED visit given the unadapted physical environment, the overall long ED length-of-stay, the exhaustion of having to repeat their child’s medical history and the diagnosis uncertainty at discharge. Most parents prefer receiving direct information and engaging in honest conversations with the ED physician. Parents also acknowledge the necessity of discussing goals of care during acute deterioration, and some identify professionals’ discomfort with those discussions. Elements contributing to positive encounter in the ED include trustful relationship with ED healthcare professionals, short wait time and presence of known primary team in the ED to ensure continuity of care. Conclusion This is the first study to explore the ED experiences of families in PPC. These findings will enhance the understanding of families’ realities and adapt emergency services to the specific needs of these children.
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Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,004 | 0,013 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,001 |
| Bibliométrie | 0,001 | 0,001 |
| Études des sciences et des technologies | 0,007 | 0,004 |
| Communication savante | 0,003 | 0,002 |
| Science ouverte | 0,001 | 0,003 |
| Intégrité de la recherche | 0,001 | 0,002 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,003 | 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 ».