Protocol for a scoping review on the methods for engaging long-term care residents with dementia in research and...

Patient engagement is important when developing health guidelines to ensure high-quality and patient-centred recommendations. However, patient engagement in research and guideline development remains suboptimal, particularly for vulnerable populations, including residents with dementia living in long-term care (LTC) who are often not included in research and guideline development because of perceived and actual challenges with their health, memory, concentration and communication. Optimal strategies and methods for engaging LTC residents with dementia in research and guideline development remain unknown.

We will conduct a scoping review in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension to answer the research questions: (1) What methods have been used to engage LTC residents with dementia in research and guideline development? (2) What are the outcomes of resident engagement? (3) What are the barriers and facilitators to resident engagement? Systematic searches for peer-reviewed articles will be conducted in: Academic Search Premier (EBSCO), APA PsycINFO (EBSCO), CINAHL (EBSCO), Medline (OVID), Embase (Elsevier), Web of Science, and Cochrane Database and in grey literature. Two team members will screen articles and extract data. Results will be presented according to the research question they address. We will engage stakeholders including residents, family members, healthcare providers and representatives from relevant organisations throughout the study.

The scoping review will synthesise what is known about resident engagement in research and guideline development. It may identify gaps in the literature about the optimal methods to engage residents in performing research and developing guidelines and reveal opportunities for new methods. The results will be helpful for researchers and policy-makers seeking to develop guidelines and researchers engaging in topics that reflect the priorities and experiences of people with dementia. Results of the scoping review will be disseminated via publication in a peer-reviewed journal and conference presentations, and a one-page lay summary will be shared with our engaged stakeholders.