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Lived Experience Research

— Case studies / Surveys

Documented case studies research.

Happell, B., Gordon, S., Bocking, J., Ellis, P., Roper, C., Liggins, J., Scholz, B., & Platania-Phung, C. 
(2018). 
“Chipping away”: non-consumer researcher perspectives on barriers to collaborating with consumers in mental health research. 
Journal of Mental Health
28(1), 49–55. 
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Abstract

Background: Collaboration between researchers who have lived experience of mental illness and services (consumer researchers) and mental health researchers without (other mental health researchers) is an emergent development in research. Inclusion of consumer perspectives is crucial to ensuring the ethics, relevancy and validity of mental health research; yet widespread and embedded consumer collaboration of this nature is known to be impeded by attitudinal and organisational factors. Limited research describes consumer researchers’ experiences of barriers. Other mental health researchers are key players in the co-production process yet there is also a paucity of research reporting their views on barriers to collaborating with consumers.


Gillard, S., Borschmann, R., Turner, K., Goodrich-Purnell, N., Lovell, K., & Chambers, M. 
(2010). 
“What difference does it make?” Finding evidence of the impact of mental health service user researchers on research into the experiences of detained psychiatric patients. 
Health Expectations
13(2), 185–194. 
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Abstract

Background: Interest in the involvement of members of the public in health services research is increasingly focussed on evaluation of the impact of involvement on the research process and the production of knowledge about health. Service user involvement in mental health research is well-established, yet empirical studies into the impact of involvement are lacking.


Fox, J. 
(2020). 
Experiences of user involvement in mental health research: exploring reflections from a service user researcher using auto-ethnography. 
Mental Health Review Journal
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Abstract

Purpose: User involvement in research is entering the mainstream of traditional mental health research. In practice, there are diverse ways in which the process of involvement is experienced by mental health service user researchers. This paper aims to explore two diverse experiences of involvement by the researcher.


Beeker, T., Glück, R. K., Ziegenhagen, J., Göppert, L., Jänchen, P., Krispin, H., Schwarz, J., & von Peter, S. 
(2021). 
Designed to clash? Reflecting on the practical, personal, and structural challenges of collaborative research in psychiatry. 
Frontiers in Psychiatry
12. 
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Abstract

Background: In the field of mental health research, collaborative and participatory approaches in which mental health service users actively contribute to academic knowledge production are gaining momentum. However, concrete examples in scientific literature that would detail how collaborative research projects are actually organized, and how they deal with the inherent challenges are rare. This paper provides an in-depth description of a three-year collaborative project that took place in the wider context of a mixed-method process evaluation of innovative models of psychiatric care in Germany.


Banfield, M. A., Morse, A. R., Gulliver, A., & Griffiths, K. M. 
(2018). 
Mental health research priorities in Australia: a consumer and carer agenda. 
Health Research Policy and Systems
16(1). 
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Abstract

Background: The perspectives of mental health consumers and carers are increasingly recognised as important to the development and conduct of research. However, research directions are still most commonly developed without consumer and carer input. This project aimed to establish priorities for mental health research driven by the views of consumers and carers in Australia.

Project Partners

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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

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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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