“Truly having a conversation with each member about their needs”: accessibility considerations for the engagement of people with lived and living experience and caregivers in mental health and substance use health research

The engagement of people with lived/living experience and caregivers in the research process can have many benefits for research and all those involved. However, research engagement settings need to be accessible to ensure that people with lived/living experience and caregivers can contribute fully to the research process, including in mental health and substance use health research contexts. This qualitative descriptive study aimed to understand the perspectives of people with lived/living experience and caregivers with regards to accessibility needs in contexts of engagement in mental health and substance use health research. A sample of 20 people with lived/living experience and caregivers with research engagement experience in the mental health and substance use health sector participated in one of five focus group discussions. Discussions were recorded, transcribed verbatim, and analyzed using codebook thematic analysis. A Lived/Living Experience and Caregiver Working Group supported all stages of the project, from design to reporting. Four themes were generated from the data: (1) Ongoing and transparent accessibility processes. (2) Offering a range of supports. (3) Allowing flexible ways to contribute. (4) Providing fair compensation. Themes are supported by subthemes and described with illustrative quotes. Ensuring that engagement is accessible and that appropriate accessibility supports are provided is essential to ensuring an authentic, meaningful engagement experience. This is an ongoing process that should be considered throughout the lifespan of the research project. By planning for accessibility early and throughout the project, research teams can help ensure that people with lived/living experience and caregivers can contribute meaningfully to the research to the best of their ability and without undue hardship. The study looked at how to make research more accessible for people with lived or living experience of mental health and/or substance use challenges and for caregivers to engage in. They can make important contributions to research, but only if they are able to take part in ways that meet their needs. The researchers held five focus groups with 20 people with lived/living experience and caregivers who had experience being involved in research in the mental health and substance use health fields. They used these discussions to better understand what helps or makes it harder for people to fully engage in such research. A working group of people with lived/living experience and caregivers was involved in every stage of this study. The study found four key messages. First, accessibility should be an ongoing and open conversation throughout the whole research project. Second, the research team should offer different kinds of support for different needs. Third, research team should provide flexible ways to contribute. Fourth, people with lived/living experience and caregivers should be paid fairly for the time, effort, knowledge, and experience they bring. Overall, making engagement accessible and providing appropriate supports is essential for an authentic and meaningful engagement experience. When research teams plan accessibility from the start and continue to address it over time, people with lived/living experience and caregivers can contribute to research more fully and without undue hardship.