Despite decades of research into ways to improve treatment and access for people with severe mental health challenges, the problems remain. New research led by Monash Rural Health, , suggests that mental health research must be co-designed with individuals with a lived experience and include their perspectives.
According to Dr. Anton Isaacs, there is a growing realization of a commonly occurring mismatch between research questions that are important to investigators and those that are relevant to people with lived experience. “There has been limited evidence of improved service quality for people with mental health challenges. For people with mental health challenges, and for their carers and families, issues of equity, disempowerment, tokenism, and exclusion from decision-making and involvement in shaping public health policy persist,” the authors said.
In its 2025 draft statement on consumer and community involvement in health and medical research, the National Health and Medical Research Council of Australia stated that the lived experiences of individuals and their perspectives must be respected.
The senior co-investigator of this study was Professor Sharon Lawn, from Flinders University, who is a lived experience research professor whose work focuses on systems of mental health care, the culture of service provision, implementation of services, and individual experiences of care. She is also the Chair of Lived Experience Australia.
Twenty-one participants with a lived experience of severe mental health challenges were interviewed for the study. Once Dr. Isaacs had established rapport with general conversation and confirmed their ability to participate in the interview, participants were asked to tell their story from the time they perceived that they began to experience distress and develop signs of mental health problems. Throughout the narrative, the interviewer noted down critical junctures in their story where care and services were either missing or could have been improved. Once the narration was complete, the interviewer drew their attention to each critical juncture identified during the narration and asked them three questions given below:
At that point in time,
- what, if anything, do you think you would have liked to know?
- what if anything would you have liked others to know?
- what opportunities if any, would you have liked for you to be able to make your own decisions (personal agency)?
Participants’ perspectives on what needed to be researched were classified into three categories: Access to care and early detection, Care and treatment, and Continuity of care.
Some of the study’s main findings were that:
- Stigma continues to be a substantial obstacle to accessing mental health services.
- There is a lack of early detection of mental health issues during school years and screening for factors contributing to mental health challenges in adulthood, such as childhood sexual abuse. .
- The involvement of police during crisis assessment and treatment causes distress, and engaging with emergency department’s (ED) procedures during a crisis were described as insensitive and inappropriate.
- Mental health issues often impacted families through vicarious trauma, stress, career disruptions, and consequent financial challenges, while family mental health services are scarce.
- There are pronounced disparities in the quality of care between private and public mental health services.
- There is a lack of trauma-informed care.
- There is an unmet need for ongoing support following the discharge of individuals from hospitals, including their interactions with Centrelink staff, the challenges associated with securing housing, and the support provided by the NDIS.
According to Dr. Isaacs, an important finding from this study “is that topics that are important to persons with severe mental health challenges exceed far beyond the scope of mental health services as we know them,”..
“The questions generated from this study are crucial for identifying and subsequently addressing existing gaps in care and services that stem from the neglect of lived experience perspectives in research endeavours.”
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