Diversity in lived/living experience engagement in mental health and substance use health research: a scoping review of the meta-research literature

People with lived/living experience of mental health or substance use health conditions and their family/caregivers are increasingly engaged in research about their conditions and needs. Ensuring that those engaged are diverse is important for appropriate representation. However, the current degree of diversity is unclear. This scoping review synthesizes demographic information in the meta-research on lived/living experience and family engagement in mental health and substance use health research to understand diversity. To be included, papers had to report on meta-research on lived/living experience or family engagement in mental health or substance use health research and provide at least two demographic data points for participants. Papers had to be in English or French and published in the last ten years. We searched PsycInfo, MEDLINE, Cumulative Index to Nursing & Allied Health Literature (CINAHL), and Web of Science databases and identified 6,342 unique records. Titles and abstracts were screened by two reviewers, followed by full text screening by two reviewers. We included 17 articles. Data were extracted in a spreadsheet, then synthesized narratively and in tables. People with lived/living experience were engaged in the review. The 17 articles emerged from predominantly White, English-speaking countries. As a whole, there is moderate diversity in the meta-research on engagement, across age, ethnic/cultural background, and education. Rates of missing data were high. There are gaps regarding older adults, children, men/males, and transgender/non-binary individuals. Metrics like primary language, employment status, spirituality, sexual orientation, immigration, and family income were rarely reported. Few papers included family members, and their specific demographics were not provided. There appears to be a moderate degree of diversity in the mental health and substance use health engagement meta-research, although many meta-research papers do not report on demographic characteristics. Researchers are called on to keep diversity in mind when recruiting people with lived/living experience and family members, avoiding tokenistic engagement to ensuring that the evidence is informed by diverse and representative voices. Researchers are further called on to report on demographics in meta-research on engagement, to understand the degree of diversity underlying the science of engagement. People with lived and living experience of a mental health or substance use health condition and their family/caregivers are increasingly engaged in research about their conditions and needs. It is important that a diverse range of voices be heard. We therefore reviewed the studies on lived/living experience and family engagement in mental health and substance use health research, to understand diversity. People with lived and living experience were engaged in the review. We searched four scientific databases and found 17 articles that provided demographic data on the advisors and co-researchers participating in studies. The 17 articles were from predominantly White, English-speaking countries. They showed that there is moderate diversity in the research on engagement, across age, ethnic/cultural background, and education. However, many articles did not report on demographics. There is a gap in the engagement of older adults, children, men and transgender/non-binary individuals. Few articles reported on aspects of diversity like primary language, employment status, spirituality, sexual orientation, immigration status, and/or family income. Few papers included family members, and their demographics are not reported separately. We call on researchers to keep diversity in mind when recruiting lived/living experience and family advisors and co-researchers, to ensure that the evidence is informed by diverse voices, but to avoid tokenism in doing so. We also call on them to report on demographics in their manuscripts on studies about engagement, so that we can understand who is being engaged and whose voices may still be missing from the research, while respecting lived/living experience and family preferences.