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Lived Experience Leadership

— Discussion and Analysis

Ideas of and issues in Lived Experience leadership including overcoming barriers.

Stewart, S., Scholz, B., Gordon, S., & Happell, B. 
“It depends what you mean by leadership”: An analysis of stakeholder perspectives on consumer leadership. 
International Journal of Mental Health Nursing
28(1), 339–350. 
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Contemporary mental health policies call for increased involvement of consumers in leadership across mental health service design, delivery, and evaluation. However, consumer leadership is not currently well understood within academia or in mental health services themselves. This study investigates how consumer leadership is currently conceptualized by stakeholders at the service delivery level.

Snyder, S. N., Pitt, K.-A., Shanouda, F., Voronka, J., Reid, J., & Landry, D. 
Unlearning through Mad Studies: Disruptive pedagogical praxis. 
Curriculum Inquiry
49(4), 485–502. 
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Medical discourse currently dominates as the defining framework for madness in educational praxis. Consequently, ideas rooted in a mental health/illness binary abound in higher learning, as both curriculum content and through institutional procedures that reinforce structures of normalcy. While madness, then, is included in university spaces, this inclusion proceeds in ways that continue to pathologize madness and disenfranchise mad people.

Scholz, B., Stewart, S. J., Bocking, J., & Happell, B. 
Rhetoric of representation: The disempowerment and empowerment of consumer leaders. 
Health Promotion International
4(1), 166–174. 
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Policy mandates consumer involvement in decisions at all levels of the mental health system. One barrier to this involvement is the expectation that consumers involved in systemic work represent broader consumer experiences. To examine how the rhetoric of ‘representation’ was used in relation to consumer involvement in mental health, a qualitative exploratory design was employed using interviews for data collection.

Scholz, B., Gordon, S., & Happell, B. 
Consumers in mental health service leadership: A systematic review. 
International Journal of Mental Health Nursing
26(1), 20–31. 
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Contemporary mental health policies call for greater involvement of mental health service consumers in all aspects and at all levels of service planning, delivery, and evaluation. The extent to which consumers are part of the decision-making function of mental health organizations varies. This systematic review synthesizes empirical and review studies published in peer-reviewed academic journals relating to consumers in leadership roles within mental health organizations.

Sandhu, B. 
Lived experience leadership rebooting the DNA of leadership: Lived experience leadership report. 
Clore Social Leadership & Tsai Center for Innovative Thinking Yale
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In recognition and respect of the varying and complex journeys, trajectories and models of leadership that have emerged in these evolving communities, the notion of Lived Experience Leadership is developed and explored in this report.

Project Partners
Mental Health Lived Experience Engagement Network (MHLEEN) logo
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Acknowledgement of Country

The National Mental Health Consumer and Carer Forum and the National Primary Health Network Mental Health Lived Experience Engagement Network acknowledge the Traditional Custodians of the lands and waters on which we work and live on across Australia. We recognise their continuing connection to land, waters, culture and community. We pay our respects to Elders past and present.

Definition of Aboriginal and Torres Strait Islander Lived Experience

“A lived experience recognises the effects of ongoing negative historical impacts and or specific events on the social and emotional wellbeing of Aboriginal and Torres Strait Islander peoples. It encompasses the cultural, spiritual, physical, emotional and mental wellbeing of the individual, family or community.

“People with lived or living experience of suicide are those who have experienced suicidal thoughts, survived a suicide attempt, cared for someone through a suicidal crisis, been bereaved by suicide or having a loved one who has died by suicide, acknowledging that this experience is significantly different and takes into consideration Aboriginal and Torres Strait Islander peoples ways of understanding social and emotional wellbeing.” - Aboriginal and Torres Strait Islander Lived Experience Centre

We welcome Aboriginal and Torres Strait Islander people to this site and invite them to provide any feedback or items for inclusion.

Recognition of Lived Experience

We also recognise people with lived and living experience of mental ill-health and recovery and the experience of people who are carers, families, kin, or supporters.


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