Addressing the Needs and Identifying Supports for Parents of Chronically Ill Adolescents and Young Adults in their Shared Transition from Pediatric to Adult Care: A Scoping Review Protocol
Notice bibliographique
Résumé
Abstract Introduction The transition from pediatric to adult healthcare marks a pivotal period for chronically ill adolescents, as they transition from a highly supportive and family-oriented environment to an adult-, and a more individual-oriented healthcare system that places a greater emphasis on personal responsibility and independence. Parents, given their firsthand experience managing their child’s healthcare, play a central role in ensuring a smooth and successful transition, yet their perspectives on the barriers and facilitators of this complex process remain vastly underexplored. This scoping review aims to assess and provide comprehensive insights into parents’ perceptions of the successes and challenges during their adolescents’ transition from pediatric to adult healthcare. Methods & analysis This scoping review is led by patient partners and will be guided by the Peters et al. and the Joanna Briggs Institute (JBI) guidelines for scoping reviews. The preliminary search strategy will be developed and calibrated in Ovid MEDLINE and will be subsequently replicated in CINAHL, PsychInfo, Embase, Web of Science, and Sociological Abstracts from inception through December 18th, 2024, including all types of studies. Grey literature sources recommended by patient partners and clinical and qualitative research experts will also be included. Two reviewers will independently perform the title and abstract review of all studies against the pre-defined inclusion and exclusion criteria, followed by the full-text review of included studies. The reference list of all included studies will also be screened to maximize the retrieval of relevant sources. Data will be extracted and analyzed quantitatively and qualitatively, with the study procedural and reporting format following PRISMA-ScR guidelines. Ethics & dissemination This scoping review, through the broad and systematic mapping of existing literature, aims to provide a foundation for developing targeted support systems, strategies and interventions to address the unique needs and barriers faced by parents and caregivers of chronically-ill adolescents during this critical transition to adult care. Strengths and limitations of this study The inclusion of scholarly, peer-reviewed and grey literature across 6 specialized and cross-disciplinary databases will help ensure a comprehensive coverage of relevant literature, minimizing publication bias, enhancing data reproducibility and methodological rigor. The involvement of patient partners in driving this review from conceptualization and planning to data synthesis and reporting of results will help ensure that the research question and interpretations of findings are grounded in patient priorities, ultimately enhancing the review’s relevance and applicability. Findings from this scoping review will be extended to inform subsequent phases of a national multicentre study that aims to enhance parental preparedness of parents and caregivers of chronically-ill adolescents to better support their transition from pediatric to adult care. In employing a practical and focused strategy, the inclusion of grey literature solely recommended by patient partners (i.e. patients and caregivers/family members) and clinical and research experts (i.e. pediatric and adult gastroenterologists, nurse practitioners, and clinical and qualitative researchers) may introduce selection bias by excluding lesser-known yet potentially impactful sources. The inclusion of literature only published in English may limit generalizability of findings to non-English-speaking populations and unique cultural contexts and healthcare settings.
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 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 | 0,097 | 0,086 |
| Méta-épidémiologie (sens strict) | 0,004 | 0,005 |
| Méta-épidémiologie (sens large) | 0,012 | 0,012 |
| Bibliométrie | 0,021 | 0,015 |
| Études des sciences et des technologies | 0,005 | 0,005 |
| Communication savante | 0,009 | 0,008 |
| Science ouverte | 0,006 | 0,007 |
| Intégrité de la recherche | 0,010 | 0,005 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,039 | 0,009 |
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 ».