Joining the ALIVE National Centre as a Carer Lived Experience Research Co-Lead

This month I take up the role of Carer/Family/Kinship Group Co-Lead with the Lived-Experience Research Collective at the ALIVE National Centre for Mental Health Research Translation, administered through the University of Melbourne. It is a national appointment that sits within the Centre's five-year program of work, Casting the Net for What Matters, funded by the Medical Research Future Fund and the National Health and Medical Research Council.

The role asks me to bring a particular vantage point into a national research conversation: that of someone who has cared for family members over many years, across language and culture, often in the absence of formal support. It also asks me to help make sure that vantage point shapes how research is designed, conducted, and translated into the systems that affect real families.

Why carer lived experience research matters

Mental health research has, for most of its history, treated families as background. Carers, parents, siblings, partners, and kinship group members have been counted in studies but rarely consulted on what should be studied. The shift to lived and living experience research is changing this, slowly. Carer lived experience research is the part of that shift most easily overlooked, because the carer voice is often softer, more divided across roles, and less institutionally organised than the consumer voice.

In multicultural communities, this gap is wider again. Carers in CaLD families often hold caregiving across generations, in languages that the system does not speak, with cultural framings of distress that do not map cleanly onto the dominant clinical language. Their knowledge does not show up in the research record because the research record has not been designed to receive it.

The ALIVE National Centre has set itself a different course. The Collective brings together researchers and co-researchers from across the lived and living experience field, including carer, family, and kinship group perspectives, and it sits inside a Centre that has named priority populations including First Nations communities, LGBTQA+ communities, and culturally diverse groups in its five-year plan. The appointment is one small part of a much larger movement, but the direction of that movement matters.

What carer lived experience research looks like in practice

The Collective gathers periodically across the country. Co-leads facilitate conversations, contribute to translational resources, support emerging researchers, and connect the Collective's work to the Centre's six working groups. Several of those working groups intersect directly with the questions I have spent years sitting with: how earlier supports reach migrant families, how culturally responsive care is understood and measured, how healing-oriented systems get built rather than assumed.

My contribution will sit at the meeting point of three things I have lived and worked across: long-term family caregiving, migrant and multicultural community experience, and the practice of supporting other workers in the sector through therapy, supervision, and training. The role is a responsibility to bring those threads into a national research conversation in a way that is useful, accurate, and accountable to the families whose experience I carry.

Looking forward

The appointment runs alongside my PhD work on lived and living experience leadership, and alongside my advisory work in suicide prevention. The connections between these threads have been there for some time. The ALIVE role gives them a national platform to develop on.

This is the work I will be doing through Lived Experience Solutions (LEXs) in the years ahead, and it is the work the ALIVE National Centre has trusted me to help shape. If your organisation is working in lived experience research, multicultural mental health, or carer engagement, you can explore how I work alongside organisations and teams or get in touch.