Understanding Lived Experience Organizations: A Systematic Scoping Review of Organizational Elements and Characteristics

Mental health lived experience organizations (LEOs) and their lived experience workforce are increasingly recognized as invaluable. However, a deeper understanding of the elements that enhance or inhibit LEOs’ efficacy is required to learn how to sustain LEOs and support their workforce. Rapid international expansion has resulted in significant LEO growth and change, challenging many LEOs to adapt. With this rapid expansion, the field is evolving faster than many LEOs can keep pace with. This review, codesigned and coproduced in partnership with a LEO to draw on both lived experience and academic perspectives, aims for a deeper understanding of which elements within a LEO enhance or inhibit its efficacy, growth, and support for its lived experience workforce.

A systematic search of peer-reviewed and non–peer-reviewed literature, following the PRISMA-ScR guidelines and JBI methodology, identified 60 records published in English between 2000 and 2022.

The results indicate general agreement regarding which LEO elements are important (e.g., culture, leadership, board composition, organizational structure, financial arrangements, and professionalization). However, considerable disagreements exist regarding the relative influence of several of these elements, especially funding arrangements, in which funder and LEO values often diverge; training for increased lived experience professionalization; and partnerships with medical model–focused mental health services.

Organizational disagreements relate to managing future LEO growth and advancing the lived experience workforce while preserving LEOs’ unique characteristics that make them valued mental health services. Further research should examine community differences among LEOs, including hybrid LEOs within services and non-LEO mental health organizations.