Elements of Participation: Using Concept Mapping to understand CBPR in a Center to Study MH Recovery

Introduction Human rights approaches to recovery from mental health (MH) disability include the right to knowledge, accessible in part through participation in knowledge production. Community based participatory research (CBPR) provides this opportunity, but little empirical work describes CBPR with this community. Methods People with MH disabilities and researchers participating in a CBPR Center to study MH recovery used Concept Mapping (CM) to formalize our understanding of participation.  Thirty-five people participated in the CM process from 11/2011 to 1/2012.  46% identified as peer advocates, 31% as researchers and 23% as other (multiple identities allowed). Nineteen participants brainstormed 75 statements about Participation. Twenty-six sorted statements based on similarity, and rated their importance. Multidimensional Scaling and Cluster Analysis were used to develop a statement map which 21 participants used in subsequent meetings to identify and name clusters and broader themes. Results The Concept Map we present will provide a three-dimensional picture of five Themes and ten Clusters the group created, named, and ranked for importance. Themes (and Clusters) created are: 1) Resources and Infrastructure (committing unanticipated resources; accommodating multiple roles); 2) Relationships and Community (missing voices; breaking down barriers; multiple stakeholders strengthen community; 3) Working through meaningful conflict and uncertainty; 4) Research approach and capacity (Learning through diverse, conflicting perspectives, changing research capacity through deliberate reflection, grounding research in lived experience,  5) Changing how knowledge is created. Conclusion Changing knowledge production to include lived experience is built on resources committed to building mutual capacity in the context of tolerating diversity, conflict and uncertainty.