A lived experience perspective on research dialogues
When did you first suspect you had a mental health condition? Tell us about your mental health experience
I experienced mental health challenges and was acutely unwell in my late 20s. At the time, I did not have insight into my condition, but my parents knew I needed help and took me to hospital for treatment.
Credit: 360 Health + Community
What support or treatment did you receive for your mental health? If you received a diagnosis, can you tell us about that experience?
During my hospital stay over 20 years ago, I felt blessed that a psychiatrist diagnosed my condition correctly and prescribed medication that worked for me. I reached clinical recovery but remained isolated and was unable to work due to my illness.
At the time, my mum suggested that I attend a Grow Group to improve my mental health. Grow offers weekly peer-support groups and a caring and sharing community, and they have a unique programme for improving and maintaining wellbeing. I accepted leadership positions within my Grow Group, grew my confidence and social network, improved my personal value, started volunteering within the Western Australia branch of Grow (which led to paid work), and reached personal recovery.
I now direct my own health care and see a general practitioner. More recently, I accessed Relationships Australia (a provider of relationship support services) to receive counselling for debriefing and problem solving.
Why did you decide to collaborate as a lived experience expert in research? Why is this important to you?
I am passionate about mental health research and became a member of the Western Australia Consumer and Community Involvement Program in 2017. This membership led to an opportunity to be an associate investigator and lived experience educator on a research project run by the University of Western Australia: ‘Depth of field: Exploring minds, hearts and voice’. Gabrielle Brand (the chief investigator on the project) treated me as an equal. I was appointed associate investigator, which opened opportunities to achieve my career goal of becoming a tertiary educator!
My involvement in this research created innovation, brought humanness to the research team and transformed the project’s culture. I highlighted the importance of recovery-oriented language in academic dialogue, which is often focused on risk and deficit and can sometimes be diminishing. I worked to build a dialogue that focuses on strength and recovery, and promotes hope, dignity and respect.
What can be done to improve representation of people with lived experience in research?
Nothing about us without us. Researchers and experts must raise awareness that the representation of people with lived experience in research creates innovation and enables best practice, and adds another layer of valued information and perspective, and people with lived experience can champion research translation into practice.
Many research funding opportunities in Australia now require consumer and community involvement owing to the policy context, including Australia’s National Health and Medical Research Council’s Statement on Consumer and Community Involvement in Health and Medical Research. Researchers in this country can build their capacity to work with people with lived experience by completing the Western Australian Health Translation Network online training programme on consumer and community involvement.
Consumer participation in research is simple — just actively listen to health consumers.
What are the potential harms of participating in research as a lived experience expert? What can be done to mitigate these harms?
It is important that researchers are trauma-informed, and aware that including lived experience expertise involves emotional labour and might be triggering. However, all emotions serve a purpose and despite how it might feel, no emotion is permanent. An awareness and understanding of emotions and the effect they have can help people to navigate research with more ease.
To mitigate psychological distress, researchers can learn about trauma-informed principles (safety, trust, choice, collaboration, empowerment and respect for diversity), and provide debriefings to people with lived experience that explore the thought–feeling connection. Other strategies include connecting people with others who can support them (for example, using a peer-based buddy system), and providing people with access to an employee assistance programme.
“It is important that researchers are trauma-informed, and aware that including lived experience expertise involves emotional labour and might be triggering”
What advice do you have for someone with lived experience who is considering collaborating with researchers as an expert?
My top tips for consumers who are involved in research include: expand your network; complete training; be patient, because change takes time; be polite, courteous and respect other points of view; be confident and ask questions; understand the research and its goals and limitations; be consistent, persistent and diplomatic; use your story and other stories appropriately and effectively — look for win–win situations; build strong relationships; understand your role and expectations; and know who to go to for support.
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