Ideas of and issues in Lived Experience leadership including overcoming barriers.
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.
To this end, semistructured interviews were conducted with 14 mental health organization members identifying as consumer leaders, colleagues supporting consumer leaders, or organization executives. Interview data were analysed using an inductive thematic analysis to develop a broad understanding of participants’ perceptions of consumer leadership. Findings indicate constructions of consumer leadership within mental health organizations can be understood in relation to four themes: consumer leadership roles, requirements, purpose, and process. Inconsistencies across participants’ perceptions of consumer leadership were identified as constituting barriers to its development, highlighting the need to better clarify the nature of consumer leadership.
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.
This paper offers Mad Studies as an alternative entry point for engaging with madness in higher education, arguing that centring madness in pedagogical praxis has the potential to interrupt hegemonic ways of knowing, being, and learning. We illustrate how this disruption is facilitated by examining particular aspects of pedagogical praxis mobilized in Mad Studies, including building curriculum alongside mad community, centring madness in course design and student assessment, and the practice of mad positivity. Ultimately, this approach provides a metacurriculum of unlearning, challenging students to consider how their engagement with madness in the classroom, and beyond, has the potential to disrupt sanist systems of oppression and the normalcy they reconstitute.
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.
Participants were consumers (n ¼ 6) working with public or private mental health organizations in Australia, and colleagues (n ¼ 3) or managers (n ¼ 5) of these consumers. Discursive psychological principles informed the analytic process, to explore contexts in which ‘representativeness’ was used to empower and disempower consumers. The findings suggest there is a lack of clarity about what is meant by representation in the mental health sector. Expecting individual consumer leaders to be representative of consumer views more broadly disempowered them in their roles. Some participants instead discussed ways that organizations should be responsible for seeking representation from more consumer leaders, thus empowering consumers working in the sector. Using the term ‘representative’ to refer to consumers working in mental health does not reflect the value of the consumer perspective and is not well understood within the sector. Comprehensive training should be provided so that mental health service providers are clear regarding the expectations of people in these roles.
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.
The Cochrane Library, Medline, and PsycINFO were searched for articles specifically analysing and discussing consumers' mental health service leadership. Each article was critically appraised against the inclusion criteria, with 36 articles included in the final review. The findings of the review highlight current understandings of organizational resources and structures in consumer-led organizations, determinants of leadership involvement, and how consumer leadership interacts with traditional mental health service provision. It appears that organizations might still be negotiating the balance between consumer leadership and traditional structures and systems. The majority of included studies represent research about consumer-run organizations, with consumer leadership in mainstream mental health organizations being less represented in the literature. Advocates of consumer leadership should focus more on emphasizing how such leadership itself can be a valuable resource for organizations and how this can be better articulated. This review highlights the current gaps in understandings of consumer leadership in mental health, including a need for more research exploring the benefits of consumer leadership for other consumers of services.
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.
This report shines a light through the prism of this new leadership framework by drawing on findings from 30 in-depth interviews and surveys completed by Lived Experience Leaders (LEx leaders). It maps, identifies, and explores the complex landscape, reach and presence of Lived Experience Leadership flourishing across UK society. However, this report also illuminates significant structural, systemic and cultural barriers that hinder, block or inadequately support LEx leaders capacity to thrive.
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.
“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.
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.