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Lived Experience Research

— Discussion and Analysis

Ideas of and issues in participatory research including overcoming barriers.

Louis-Smith, K. (Host) 
Peer workers and mental health recovery. 
Lived Experience series (Part 4), Peer workers and mental health recovery. (No. 17). [Audio podcast episode]. In Get Real: Talking mental health & disability
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In this episode Karenza Louis-Smith talks with Grace and Donna who work at ermha365 as peer workers, with lived experience of mental health challenges. She is joined by Sharon Sherwood who leads all of ermha365’s mental health programs and services.

Spies, R., Ennals P., Egan, R., Hemus, P., Droppert, K., Tidhar, M., Simmons, M., Bendall, S., Wood, T. & Lessing, K. 
Co-research with people with mental health challenges: Transforming knowledge and power. 
Liamputtong P. (eds) Handbook of Social Inclusion
Springer, Cham. 281-307. 
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Consider what is regarded as knowledge about mental health. Who created that knowledge? What opportunities did people who experience mental health challenges have to contribute to that knowledge; knowledge that informs organizational and social responses to their experiences? We imagine not many. One means to knowledge production is co-produced research; where people who the research is aimed to impact are central contributors to the entire process.

Scholz, B., Happell, B., Gordon, S., Warner, T., Roper, C., Ellis, P., Waks, S., & Platania-Phung, C. 
“People just need to try it to be converted!”: A picture of consumer mental health research in Australia and New Zealand. 
Issues in Mental Health Nursing
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A range of barriers that impede collaborations between consumer researchers and other researchers have been identified, despite clear acknowledgement of the benefits of this approach in the literature. Recent research has questioned whether the costs of collaborative research outweigh the benefits. The overarching aim of the current study is to better understand non-consumer researchers' attitudes to, and issues concerning, engagement with consumer researchers.

Scholz, B., Gordon, S., Bocking, J., Liggins, J., Ellis, P., Roper, C., Platania‐Phung, C., & Happell, B. 
“There’s just no flexibility”: How space and time impact mental health consumer research. 
International Journal of Mental Health Nursing
28(4), 899–908. 
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Non-consumer researchers collaborating with consumer researchers can benefit from greater relevance of research, and improved congruence between research processes and health policy. As with all research collaborations, such partnerships are both constrained and facilitated by research ecosystems. However, it seems that collaborations with consumer researchers are impacted in particular ways by the research ecosystem.

Sangill, C., Buus, N., Hybholt, L., & Berring, L. L. 
Service user’s actual involvement in mental health research practices: A scoping review. 
International Journal of Mental Health Nursing
28(4), 798–815. 
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Service user involvement in mental health research is on the international political agenda, for example mirrored by an emphasis on user involvement in funding of research. The idea is that service users contribute with their lived experiences of mental distress to the research process and thereby heighten the quality and relevance of the research.

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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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