Increased community engagement of Indigenous Peoples in dementia research leads to higher context relevance of results

Abstract

Introduction Health research that focuses on Indigenous Peoples must ensure that the community in question is actively engaged, and that the results have context relevance for Indigenous Peoples. Context relevance is “the benefits, usability, and respectful conduct of research from the perspective of Indigenous communities.” The purpose of this study was to apply two tools within an already-published scoping review of 76 articles featuring research on cognitive impairment and dementia among Indigenous Peoples worldwide. One tool assessed levels of community engagement reported in the corpus, and the other tool assessed the context relevance of recommendations in the corpus. We hypothesized that research with higher levels of reported community engagement would produce recommendations with greater context relevance for Indigenous Peoples. Methods We employed semi-structured deductive coding using two novel tools assessing levels of reported community engagement and context relevance of recommendations based on studies included in the existing scoping review. Results Application of the two tools revealed a positive relationship between increasing community engagement and greater context relevance. Community engagement primarily occurred in studies conducted with First Nations, Inuit, and Métis populations in Canada and with Australian Aboriginal and/or Torres Strait Islander Peoples. Research with Alaska Native, American Indian, and Native Hawaiian Peoples in the USA stood out for its comparative lack of meaningful community engagement. Discussion There is opportunity to utilize these tools, and the results of this assessment, to enhance training and mentorship for researchers who work with Indigenous populations. There is a need to increase investigator capacity to involve communities throughout all phases of research, particularly in the pre-research stages.