Youth and family engagement in childhood disability evidence syntheses: A scoping review
Notice bibliographique
Résumé
Within the last decade, stakeholder engagement in research has become increasingly popular in childhood disability research; however, literature on the engagement of youth with neurodisabilities and their families in evidence syntheses is underdeveloped. Involving patients as partners in research has the potential to improve applicability and relevance of the research and benefit patient partners (e.g. enhanced self-esteem, increased research knowledge and skills); however, the methods, challenges, outcomes and recommendations of engaging youth with neurodisabilities and their families in evidence syntheses are unknown. Two parents of youth with complex disability needs were engaged as partners throughout this review. Following methods outlined by Arksey and O'Malley (2005), the primary research question in this scoping review is twofold: (i) what activities have youth with neurodisabilities and their families been engaged in as part of evidence syntheses and (ii) what were the outcomes of that engagement? After full text review of 369 articles, nine articles were included. Youth and families were engaged prior to the evidence synthesis and at every stage in the project, most often during data analysis where they contextualized the findings. Youth and family engagement were not formally evaluated; however, positive outcomes were reported by parents and researchers. Challenges such as increased time, sustaining engagement, and parents' dissatisfaction with their level of involvement were reported. Recommendations centred around providing partners with information, building relationships via social media, and openly communicating about roles, feedback and logistics. Childhood disability researchers should be aware of how they can increase engagement opportunities at all stages of evidence syntheses and how they might improve accessibility for youth with neurodisabilities and their families. Further research is needed to solidify a unified framework for conduct and reporting of youth and family engagement in evidence syntheses.
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 distillée sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Apprise à partir de 10 348 étiquettes directes de Codex et de 10 348 étiquettes directes de Gemma. Le mode candidate est l'union des têtes enseignantes seuillées; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont ni des étiquettes humaines ni des étiquettes directes de modèles de pointe.
Scores Codex et Gemma par catégorie
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,004 | 0,001 |
| Méta-épidémiologie (sens strict) | 0,001 | 0,001 |
| Méta-épidémiologie (sens large) | 0,002 | 0,000 |
| Bibliométrie | 0,000 | 0,000 |
| Études des sciences et des technologies | 0,001 | 0,000 |
| Communication savante | 0,000 | 0,000 |
| Science ouverte | 0,000 | 0,001 |
| Intégrité de la recherche | 0,000 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,001 | 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 tête enseignante, 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 ».