Gaps in the Engagement of People With Lived and Living Experience and Caregivers in Mental Health and Substance Use Health Research: A Qualitative Study of Untapped Potential
Notice bibliographique
Résumé
BACKGROUND: People with lived/living experience and family/caregivers (PLLEX-C) can be engaged in mental health and substance use health research in roles such as advisors, collaborators, and co-researchers. While there is a substantial body of research describing the barriers and facilitators to effective lived experience engagement, the actual contributions that PLLEX-C are making to the research remains under-explored. This qualitative descriptive study aimed to explore new areas where PLLEX-C can contribute to the research process. We wanted to understand gaps in the contributions of PLLEX-C and how we can provide opportunities to grow and enhance their contributions to the research in which they are engaged. METHODS: A Canada-wide sample of 28 PLLEX-C took part in one of five focus groups, while 12 researchers from across Canada took part in individual interviews using a co-designed semi-structured interview guide. Discussions were recorded, transcribed, and analyzed using codebook thematic analysis. We engaged PLLEX-C throughout the course of the study. RESULTS: Gaps in the engagement of PLLEX-C were found across the research lifecycle. This included key aspects of project initiation, like establishing research questions and priorities, contributing to grant applications, and contributing to ethics processes. Gaps were also encountered in the research operations process, in terms of recruitment processes and data analysis. Lastly, gaps at the end-of-grant knowledge translation stage included manuscript co-authorship and co-presentation at conferences or other events. CONCLUSIONS: PLLEX-C are willing to be engaged in research across the research lifecycle, but many have experienced areas of untapped potential. To develop appropriate engagement plans for a given project, it is important to have open discussions with the PLLEX-C engaged to understand their areas of skill, interest, and professional development goals, as well as barriers to full engagement in some stages of the project. This will make it possible to co-design a creative and flexible personalized engagement plan that is meaningful to them and maximizes their engagement potential. This process will ensure that authentic engagement overrides tokenistic practices. PATIENT ENGAGEMENT: This study was conducted on lived/living experience engagement and the team includes people with lived/living experience. A lived/living experience working group contributed to the design and operation of the project, as well as to data analysis, interpretation, and co-authorship.
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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 | 0,003 | 0,000 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,001 | 0,001 |
| Études des sciences et des technologies | 0,001 | 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 ».