Introduction: Australia and New Zealand mental health policy requires consumer participation in all aspects of mental health services. Systemic participation informs and improves the quality of mental health services. Collaboration with consumer researchers should be similarly required. Enhanced understandings of collaborations are needed. Aim To enhance understanding of the perspectives and experiences of nonconsumer researchers in working collaboratively with consumers as researchers.
Method: This qualitative exploratory study involved interviews with nonconsumer mental health researchers who have worked collaboratively with consumers in research. Interviews were conducted with participants from Australia and New Zealand.
Results: "Allyship" emerged as a major theme. This describes nonconsumer researchers playing an actively supportive role to facilitate opportunities for the development and growth of consumer research roles and activities. Seven subthemes were identified: establishing and supporting roles, corralling resources, guiding navigation of university systems, advocacy at multiple levels, aspiring to coproduction and consumer-led research, extending connections and partnerships, and desire to do better.
Discussion: Allyship may have an important role to play in the broader consumer research agenda and requires further consideration. Implications for practice Embedding meaningful consumer participation within mental health services requires active consumer involvement in research. Allies can play an important facilitative role.
Stigmatizing views towards consumers may be held even by those working within mental health organizations. Contemporary mental health policies require organizations to work collaboratively with consumers in producing and delivering services. Using social exchange theory, which emphasises mutual exchange to maximise benefits in partnership, the current study explores the perspectives of those working within organizations that have some level of consumer leadership.
Interviews were conducted with 14 participants from a range of mental health organizations. Data were transcribed, and analyzed using thematic analytic and discursive psychological techniques. Findings suggest stigma is still prevalent even in organizations that have consumers in leadership positions, and consumers are often perceived as less able to work in mental health organizations than non-consumers. Several discourses challenged such a view - showing how consumers bring value to mental health organizations through their expertise in the mental health system, and their ability to provide safety and support to other consumers. Through a social exchange theory lens, the authors call for organizations to challenge stigma and promote the value that consumers can bring to maximize mutual benefits.
Objectives: Contemporary mental health policies call for consumers to be involved in decision-making processes within mental health organisations. Some organisations have embraced leadership roles for consumers, but research suggests consumers remain disempowered within mental health services. Drawing on a service-dominant logic, which emphasises the co-creation of value of services, the present study provides an overview of consumer leadership within mental health organisations in the Australian Capital Territory.
Methods: Mental health organisations subscribing to the local peak body mailing list were invited to complete a survey about consumer leadership. Survey data were summarised using descriptive statistics and interpreted through the lens of service-dominant logic.
Results: Ways in which organisations may create opportunities for consumers to co-create value within their mental health services included soliciting feedback, involving consumer leaders in service design, having consumer leaders involved in hiring decisions and employing consumer leaders as staff or on boards. Strategies that organisations used to develop consumer leaders included induction, workshops and training in a variety of organisational processes and skills.
Conclusions: The findings of the present study extend the application of a service-dominant logic framework to consumer leadership within mental health organisations through consideration of the diverse opportunities that organisations can provide for consumer co-creation of service offerings.
This literature review is about the concept and achievement of lived experience leadership, and the roles that leaders undertake in seeking change, sharing a vision of recovery and enhanced citizenship. It is also about the organisational and system conditions that support leaders across different settings of activity, including traditional mental health services, academia and consumer run organisations (CRO), and the informal places where leaders seek and organise for change.
In 2019 the SA Lived Experience Leadership Advocacy Network (LELAN) and UniSA’s Mental Health and Suicide Prevention Research and Education Group (MHSPRE) were successful in gaining funding from the Fay Fuller Foundation to establish the Activating Lived Experience Leadership (ALEL) project. The ALEL project was designed as a participatory action research (PAR) and community development project, bringing people together to improve the way that lived experience leadership is defined, recognised and utilised at the systems level.
The research functions of the project conducted focus group and survey research with established and emerging Lex leaders, as well as interviews with South Australian system and sector leaders. This work was complemented by community development activities focused on connection, collaboration and mobilising the LEx community. These have included workshops on using literature for research and systems change, an ongoing community of practice on LEx leadership, two System and Sector Leaders’ Summits, and accompanying interviews. The project team has also mapped LEx networks in the state to support ongoing communications and learning opportunities. Importantly this funding led to the establishment of LELAN as a LEx peak body in SA, contributing immensely to the opportunities for collective action and LEx-led initiatives. LELAN has been able to strengthen the development of LEx networks and its consultancy work in facilitating coproduction with organisations and policy makers.
The generation and analysis of research findings have been woven through the community development activities, creating awareness of the potential of LEx leadership in systems level change and fostering commitment to action.
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.