87 Far from home: Qualitative evaluation of the impact of geographic distance from a tertiary paediatric hospital in Canada on family experiences
Notice bibliographique
Résumé
Abstract Background Canada’s expansive geography has implications for children and their families seeking tertiary paediatric care. There is minimal literature describing their experiences, particularly challenges associated with receiving inpatient care. This qualitative study builds on previous work that captured out-of-pocket costs and stress levels facing families while admitted to our hospital. Objectives Gather an in-depth understanding of family experiences through exploring gaps in current approaches and supports received 2) Generate potential patient-centred solutions to challenges identified Design/Methods Ethics approval was obtained. Family partners were involved in all aspects of study design. Qualitative descriptive methodology was adopted to allow for in-depth exploration of family experiences. Semi-structured interviews explored the above objectives. Participants were families that travelled more than 50 km to receive inpatient care under General Paediatrics at a tertiary hospital in Canada within 1 year of when the interview was conducted. In addition, families were purposively recruited through collaboration with community paediatricians until theoretical saturation was reached. Interviews were transcribed verbatim, de-identified, and analyzed for common themes using descriptive analysis in NVivo software. Results Between June and October 2023, 16 caregivers participated in our study. The key themes identified were in the following categories: navigating the unknown, bridging the gaps for far away families through equitable resources, and the role of self-advocacy. Families spoke to the overwhelm they faced when being admitted to our centre. For many, it was their first time in our city and the costs associated with being in this city were significant. They identified key gaps in resources and supports, such as knowledge of medical teams, difficulties with eligibility requirements and reimbursement, and inadequate availability of resources after-hours and on weekends. Self-advocacy was important to all participants and innovative solutions were proposed, such as knowledge exchange facilitated by caregivers with lived experience and caregiver-facilitated trainings for providers. Conclusion This qualitative study highlights the unique challenges facing families traveling significant distances to receive essential healthcare at a tertiary paediatric hospital in Canada. While significant gaps in resources exist, participants suggested innovative, patient-centred, equitable strategies to bridge these gaps. We plan to partner with patient partners to translate this data into evidence-based interventions to support these families at our institution.
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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 | 0,011 | 0,017 |
| Méta-épidémiologie (sens strict) | 0,001 | 0,001 |
| Méta-épidémiologie (sens large) | 0,001 | 0,001 |
| Bibliométrie | 0,002 | 0,003 |
| Études des sciences et des technologies | 0,025 | 0,014 |
| Communication savante | 0,006 | 0,002 |
| Science ouverte | 0,003 | 0,007 |
| Intégrité de la recherche | 0,001 | 0,002 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,005 | 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 ».