Scoping review of methods for engaging long-term care residents living with dementia in research and guideline development

Abstract

Objectives To describe: (1) methods used to engage long-term care (LTC) residents living with dementia in research and guideline development; (2) the outcomes of engagement; and (3) barriers and facilitators to engagement.Design Scoping review.Search strategy We conducted searches in Academic Search Premier (EBSCO), APA PsychInfo (EBSCO), CINAHL (EBSCO), Medline (OVID), Embase (Elsevier), Web of Science and the Cochrane database, and a structured grey literature search in July 2021 and updated in March 2023. We included studies that described or evaluated resident engagement, defined as including residents living with dementia in the process of developing healthcare guidelines or research which could include collaborators or partners in planning, execution or dissemination of the guideline or research. Title, abstracts and full-texts were screened for eligibility by two team members using a pilot-tested process. Data were extracted from included studies independently and in duplicate by two team members using a pre-tested data extraction form. Results were narratively synthesised according to the research question they addressed.Results We identified three studies for inclusion. Residents were engaged at the beginning of the research projects through interviews, focus groups, and consultations. None of the included articles described the outcomes of engagement. Barriers to engagement were predominantly at the resident level, including impaired verbal communication limiting resident’s abilities to participate in discussions, while increased time to support engagement was reported as a barrier at the resident and research team levels.Conclusions We found a small body of literature describing the engagement of LTC residents in health research and guideline development. Future work should explore alternative methods to engage LTC residents living with dementia, including art-based methods, and the effect of including resident engagement. Guideline developers and researchers should ensure adequate time and human resources are allocated to support engagement.