Communicating Effectively when Engaging People with Lived Experience in Mental Health and Substance use Health Research: A Qualitative Descriptive Study

Background. People with lived experience of mental health and/or substance use challenges and families (PWLE/F) are increasingly engaged in research, providing positive impacts. However, effective engagement can be challenging, including ensuring effective communication. This qualitative study sought to understand the communication preferences of PWLE/F who are engaged in mental health and substance use health research. Method. A total of 18 participants (aged 19 to 79) took part in one of four focus group discussions. A semi-structured interview guide was used to facilitate the discussions. Focus group transcripts were analyzed using codebook thematic analysis. PWLE/F were engaged in all stages of the study in the form of a PWLE/F Advisory Group. Results. Four themes were generated from the data: 1) Communicate in trusting and respectful ways, 2) Use an accessible communication style, 3) Employ effective communication approaches before, during, and after meetings, and 4) Use technology effectively to support engagement. Each theme is illustrated by several subthemes and representative quotes. Conclusions. Clear communication can help support strong engagement practices, where everyone involved has the opportunity to contribute. Friendly, accessible, jargon-free communication can help people with lived experience and families feel authentically engaged, but departs from typical scientific communication styles and may require specific effort for some groups to achieve. Communication should be continuous, throughout the engagement cycle. Technology can be used to help support this. Attending to clear communication throughout the research and engagement lifecycle is a key consideration that can help achieve an authentic PWLE/F engagement climate.