The Beanstalk Program: Developmentally Focused Care for the Young Transplant Child During Prolonged Hospitalization
Notice bibliographique
Résumé
Purpose: Solid organ transplantation (SOT) is standard therapy for patients with end stage disease; however young children with prolonged hospitalization due to organ failure and SOT are at increased risk for developmental delay. The Beanstalk Program (BP) was established on the multi-organ transplant ward at an acute care, paediatric hospital in Toronto, Canada. Using an inter-professional, family-centred model, the program strives to enhance the developmental experiences of chronically ill, long-term hospitalized (>3 weeks) children (birth to 3 years). It provides an optimal environment, ongoing education and facilitates positive experiences to enhance early childhood development. This study investigates parental experiences and perception of the developmentally focused care during their child's hospitalization. Methods: Following IRB approval, parents whose children were part of the BP between 2003-2008 were recruited to participate in a mixed method study. Participants completed the Measures of the Process of Care (MPOC-20), with additional questions regarding the BP, and were invited to participate in a follow-up qualitative semi-structured interview. MPOC-20 scores are reported descriptively. Interviews were transcribed and analysed until saturation of themes was achieved. Results: The MPOC-20 was completed by 20 parents (of children hospitalized between 2-15 months; diagnosed with liver failure, intestinal failure, renal failure or pre/post liver transplant, liver/small bowel transplant). MPOC-20 scores rate the extent of healthcare provider's behaviour as perceived by the family ranging from 1 (worst) to 7 (best). Highest scores included Respectful and Supportive Care (6.33) and Beanstalk Programming (6.34); lowest scores were for Providing General Information (5.65). Interview data generated several key themes depicting interplay between the child, the parent and the provision of developmentally focused care. Overarching themes include: a) Parents describe striving for positive and normal developmental experiences for their child within the hospital environment with the importance of routines, creating safe spaces for their child and accommodating the family/child's needs; b) Parents value the focus on child development in the midst of their child's complex medical issues c) Receiving appropriate developmental information and skills helped parents shift from being overwhelmed with a medically ill child to being confident and empowered to care for their child and transition home Conclusion: Parental perceptions of experiences during prolonged hospitalizations attest to the importance of developmentally focused care for young SOT patients. The BP has positively impacted the culture of care for this population and can inform future development and expansion of similar programs for young infants and children.
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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 | 0,002 | 0,003 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,000 | 0,000 |
| Études des sciences et des technologies | 0,002 | 0,001 |
| Communication savante | 0,001 | 0,001 |
| Science ouverte | 0,001 | 0,003 |
| 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 ».