Goals of the mental health consumer movement include redressing inequality and increasing consumer leadership across the mental health sector. A means of achieving these goals is empowerment of consumers at systemic levels of the mental health sector. There have been calls for research to focus on allies – those who use their power to support and advocate for the goals of the consumer movement.
This study aimed to examine the role of allies in consumer empowerment. Semi-structured interviews were conducted with 15 individuals (including three consumers, nine allies, and three participants each identifying as both consumer and ally). Findings suggest that allies cannot directly empower consumers but should support opportunities for consumer leadership within the sector. We discuss how allies might do this and avoid paternalism in their allyship.
In recent years, investment in participatory research methods within mental health services research has grown. Participatory efforts are often limited in scope, however, and attention to research leadership is largely absent from discourse about stakeholder involvement in the United States.
This Open Forum calls for investment in building a pipeline of researchers with significant psychiatric disabilities and intersecting lived experiences frequently studied in public sector services research, including homelessness, incarceration, comorbid health problems, structural racism, and poverty. A series of concrete steps are described that faculty and research leadership can take now.
In this issue, Dana Foglesong and colleagues headline Psychiatric Services’ new Lived Experience Inclusion and Leadership column. To the best of my knowledge, their column is also the first peer-reviewed publication on peer support in the journal, led and co authored in its entirety by lived experience leaders within the peer support movement, most of whom have also worked as peer specialists.
Although lived experience–led research is not the exclusive remit of the Lived Experience column, this is the sort of work we (the column editors) are most excited to see. It is scholarship that represents a tangible democratization of knowledge production that contributes to rebalancing epi-stemic disparities stemming from historical failures to fully and equitably include those whom psychiatric services are designed to serve.
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 two years of 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.
This Consensus Statement is the result of working with mental health, social sector and lived experience leaders to determine actions we can all take to embed, and leverage lived experience across South Australia.
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.