Perspectives on lived experience leadership; values, qualities and skills for effective leaders of systems change: participatory action research

Abstract

Background: The aim of this study was to identify and explore the values, qualities and skills that constitute mental health lived experience leadership, from the perspectives of emerging and accomplished lived experience leaders and allies. Methods: As a part of a larger lived experience led participatory action research project, multiple qualitative methods were used. These included focus group discussions and an online forum with 31 diverse lived experience leader participants, and a separate online qualitative survey, which was completed by 48 respondents from various urban, regional and rural settings. Participants included consumer and carer leaders. All data was collected in 2020, coded and thematically analysed. Results: The analysis of data showed the complexity of activity and accompanying values, qualities and skills that are perceived to be important features of lived experience leadership. These features are described via six themes: 1) stands up and speaks out, 2) lived experience lens and positioning, 3) champions justice, 4) creates and nurtures safe and connected spaces, 5) leads and inspires change, and 6) being strategic in mobilising. Conclusion: This study extends understandings of lived experience leadership by emphasising its importance in guiding the development of the peer workforce, systems advocacy and community-based mental health initiatives. Defining the key elements of lived experience leadership contributes to training and reflective learning for emerging leaders and creating shared understanding and recognition for other service and sector leaders across the broader mental health ecosystem.