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Lived Experience Research

— Models, Guidelines & Frameworks

What should be done and how it can be done.

Reupert, A., Ward, B., McCormick, F., Ward, C., Waller, S., & Kidd, S. 
Developing a model of family focused practice with consumers, families, practitioners and managers: a community based participatory research approach. 
BMC Health Services Research
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Background: While governments are urging adult mental health services to support consumers in the context of their family, there is little information about what family focused practice is, nor how it might be enacted.

Rose, D. 
Participatory research: real or imagined. 
Social Psychiatry and Psychiatric Epidemiology
53(8), 765–771. 
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Background: Participatory research has as a central tenet that power relations between researcher and researched be reduced. In the last 20 years, a substantial literature has demonstrated the difficulties inherent in this as well as the troublesome nature of certain central concepts.

National Mental Health Commission 
National Mental Health Research Strategy. 
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Principle 3: Support lived experience, collaboration and leadership in mental health

Actions Towards Change

  • Embed co-design and co-production approaches in mental health research methodologies and research ethics processes.
  • Support and promote community directed mental health research involving Aboriginal and Torres Strait Islander peoples.

Happell, B., Gordon, S., Bocking, J., Ellis, P., Roper, C., Liggins, J., Platania-Phung, C., & Scholz, B. 
Mental health researchers’ views about service user research: A literature review. 
Issues in Mental Health Nursing
39(12), 1010–1016. 
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What is known of the subject: Consumer participation in mental health services is an expectation articulated through mental health policy. Consumers as researchers could contribute significantly to mental health services. Barriers to participation are significant and limit consumer involvement.

Happell, B., Gordon, S., Roper, C., Scholz, B., Ellis, P., Waks, S., Warner, T., & Platania‐Phung, C. 
“It is always worth the extra effort”: Organizational structures and barriers to collaboration with consumers in mental health research: Perspectives of non‐consumer researcher allies. 
International Journal of Mental Health Nursing
29(6), 1168–1180. 
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Notable barriers have been identified as impeding consumer researcher positions that must be better understood and ultimately addressed. The aim of this research was to better understand these barriers from the perspectives of non-consumer researchers who have worked collegially with consumer researchers. We developed a self-report survey, Consumers as Researchers in Mental Health (CaRiMH) and administered it to non-consumer mental health researchers in Australia and New Zealand.

Project Partners
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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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