Accessibility Tools

Lived Experience Research

— Models, Guidelines & Frameworks

What should be done and how it can be done.

Happell, B., Gordon, S., Roper, C., Scholz, B., Ellis, P., Waks, S., Warner, T., & Platania‐Phung, C. 
(2020). 
“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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Abstract

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.


Happell, B., Gordon, S., Roper, C., Ellis, P., Waks, S., Warner, T., Scholz, B., & Platania‐Phung, C. 
(2020). 
Establishing an expert mental health consumer research group: Perspectives of nonconsumer researchers. 
Perspectives in Psychiatric Care
57(1), 33–42. 
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Abstract

Purpose: To explore the views and opinions of nonconsumer researchers to the concept of an Expert Consumer Researcher Group.


Daya, I., Hamilton, B., & Roper, C. 
(2019). 
Authentic engagement: A conceptual model for welcoming diverse and challenging consumer and survivor views in mental health research, policy, and practice. 
International Journal of Mental Health Nursing
29(2), 299–311. 
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Abstract

As involvement of consumers/survivors in planning, delivery, and evaluation of services has increased, expectations of authentic and effective engagement, versus tokenism, have also risen. Different factors contribute to, or detract from, authentic engagement. Writing from mental health consumer/survivor and nursing positioning, respectively, we aim to redress the common problem of including only a narrow range of views and voices.


Banfield, M., Randall, R., O’Brien, M., Hope, S., Gulliver, A., Forbes, O., Morse, A. R., & Griffiths, K. 
(2018). 
Lived experience researchers partnering with consumers and carers to improve mental health research: Reflections from an Australian initiative. 
International Journal of Mental Health Nursing
27(4), 1219–1229. 
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Abstract

Consumer and carer involvement in mental health research is a growing and developing field. Whilst there has been policy and in-principle support for such involvement from governments around the world, lived experience researchers conducting academic research in partnership with other consumers and carers remains uncommon.

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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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