Improving Transition Practices: Understanding Family Experiences and Needs in Transitioning Their Child to Developmental/Rehabilitation Services
Notice bibliographique
Résumé
Abstract BACKGROUND: Children born preterm (<37 weeks) with cerebral palsy (CP) have long-term complex medical needs that require transitions between multiple healthcare services, necessitating parental support. The experiences of parents undergoing early transitions from the neonatal intensive care unit (NICU) to neonatal follow-up clinics (NFUC) to home are well-documented. Our prior research conducted found parents described positive transitions as: access to information, feeling involved in care and witnessing improvement in their child’s health outcomes post-transition. Negative experiences entail: unanticipated differences between healthcare services, feeling separated from their child and having inadequate information. Unfortunately, the next transition from children with CP born preterm (<37 weeks) to developmental/rehabilitation services (DRS) is grossly under-studied and knowledge from well-studied healthcare transitions has yet to be applied to this population. OBJECTIVES: To identify and describe the experience and needs of parents of children with CP born preterm, as they transition from NFUC to DRS. Additionally, to make recommendations building upon characteristics of supportive/positive transition experiences to meet the emotional, informational, and instrumental needs of parents during transition to DRS. DESIGN/METHODS: A descriptive qualitative study was conducted recruiting English-speaking parents of children born preterm with CP that required NICU hospitalization, and DRS post CP diagnosis. Purposeful and maximum variation strategies were used to recruit a sample of 15 parents. To ensure rigor, sampling continued until data saturation was reached. Interviews were audio-recorded, transcribed verbatim, coded using NVivo 10 software and underwent thematic analysis. Data collection and analyses were performed concurrently, with themes from early interviews incorporated, collapsed and used to inform later interviews. RESULTS: A majority of participants were mothers, whose child had received DRS for the past one to 12 years. Preliminary themes iterated by parents’ transition experiences included: Poor communication of diagnosis caused anxiety surrounding transition of care; a lack of timely access to appropriate care and resources negatively affected parents’ experiences; continuity and consistency of healthcare providers improved families’ perception of accessibility to care; and social support was desired throughout the transition period. CONCLUSION: The transition between NFUC and DRS for families with CP is significant, but lacks best practice research to advise care. Preliminary recommendations derived from data reveal the need to better support families earlier on in the transition process, beginning at the NFUC. Further research is required to identify best practices to strengthen communication, family involvement, continuity of care, and timely access to informational supports for parents.
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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 | 0,004 | 0,009 |
| 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 | 0,003 | 0,002 |
| Communication savante | 0,002 | 0,003 |
| Science ouverte | 0,001 | 0,003 |
| Intégrité de la recherche | 0,001 | 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 ».