Best Practices Guidelines for the Engagement of People With Lived Experience and Family Members in Mental Health and Substance Use Health Research: A Modified Delphi Consensus Study
Notice bibliographique
Résumé
INTRODUCTION: People with lived experience of mental health and/or substance use conditions and their families (PWLE) are increasingly engaged in research, yet rigorous guidelines for engagement are lacking. This study aims to co-design best practice guidelines to support the authentic, meaningful engagement of PWLE in mental health and/or substance use health research. METHODS: A multi-panel modified Delphi study was conducted with 61 expert panelists (35 PWLE and family members, 26 researchers/research support staff from across Canada). Participants rated 56 recommendations for importance and clarity. Consensus was defined as ≥ 70% of participants rating items at 6 or 7 on a 7-point Likert scale ('very important' or 'essential'). Qualitative feedback was analysed using content analysis to identify new items and reviewed for improvements in item clarity. After each round, items not meeting the established threshold of importance were removed. Items with low clarity scores were reworded. A PWLE advisory panel was actively involved throughout the study's design, implementation, interpretation, and reporting, ensuring that the perspectives of people with lived experience were integrated throughout the research process. RESULTS: Three Delphi Rounds were conducted. In Round 1, importance ratings ranged from 51.7% to 96.7% of participants ranking the items above the established threshold (average 80.1%), with clarity ratings ranging from 39.3% to 86.9% (average 70.7%) and an average importance coefficient of variation (CV) of 0.16. Four items were deleted, two new items were added and fifty-five items were revised. In Round 2, 60 (98.4%) participants responded. Importance ratings ranged from 57.6% to 96.7% (average 80.2%; average CV = 0.20). Clarity ratings ranged from 50.9% to 93.2% (average 77.9%). Five items were deleted and eleven revised. In Round 3, 60 (98.4%) participants provided importance ratings ranging from 66.7% to 98.3% (average 80.8%; average CV = 0.20), and clarity ratings ranging from 63.3% to 94.9% (average 81.1%). Three items were deleted and nine were revised. Forty-four final best practices are proposed. CONCLUSION: These co-developed best practice guidelines offer recommendations for meaningful PWLE engagement in mental health and/or substance use health research. By following these guidelines, research teams can ensure that PWLE contributions are genuinely valued and effectively integrated, ultimately enhancing the quality and impact of the research and fostering authentic collaboration. PATIENT AND PUBLIC INVOLVEMENT: People with lived experience were engaged throughout the project as key team members, from a patient-oriented research perspective. They are also co-authors on this manuscript.
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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) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,001 | 0,000 |
| Bibliométrie | 0,000 | 0,001 |
| Études des sciences et des technologies | 0,004 | 0,000 |
| Communication savante | 0,000 | 0,000 |
| Science ouverte | 0,000 | 0,000 |
| Intégrité de la recherche | 0,000 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,000 | 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 ».