For research to be impactful, we need to ensure that it is considerate to the needs, wants, and experience pathways of the people it affects. What might be considered a ‘perfect’ solution to mental health or substance use disorders may then fall down in implementation, especially if it is not used, trusted, or reflective of how people relate to themselves and the world around them.  

At the Matilda Centre, we aim to take great care to include these considerations from the onset of our research. We do this by investing in lived experience implementation. 

Lived experience implementation involves working with people who have direct lived experience that can bring insights to the research process from conception to dissemination.  

One of our excellent lived experience researchers is Kiara Roche, a Research Assistant (Lived Experience) who works with the respectED and Matilda Centre Lived Experience pillar teams. She facilitates and provides research support for people with lived experience, interacting with these programs to ensure that our research meets the needs of both the people participating and its end users.  

We caught up with her to learn more about her journey, her work, and why researchers should care about the lived experience of those they’re researching.

I became involved with the Matilda Centre after meeting several incredible women working at the Centre who recognised my lived experience and the depth of my commitment to amplifying my community’s voice. Having been a young carer for as long as I can remember, I was determined to have my voice heard through advocacy and had established myself as an experienced professional within the advocacy and policy sectors. That journey led me to a consultation with Dr Amy‑Leigh Rowe, a pivotal moment for which I am profoundly grateful. Amy listened to my story, recognised the complexity of my lived experience, and saw potential in me that I hadn’t seen yet in myself. She opened doors for me that I didn’t know existed, and changed the trajectory of my life.  

Amy invited me to become a Lived Experience Partner for the NSW Ministry of Health’s Strategy for Young People’s Health and Wellbeing 2025+, and later included me as an Associate Investigator for respectED, where I am now also a Lived Experience Research Assistant. Through her leadership, I was introduced to phenomenal academics like Dr Siobhan O’Dean, who has been instrumental in breaking down countless barriers for me. 

I now also work with the amazing Dr Steph Kershaw as a Lived Experience Coordinator for GLEE and LEARN. I am a member of the Matilda Centre’s Lived Experience Engagement Pillar, working with Professor Cath Chapman, and I am a coordinator on the Matilda Centre’s Youth Advisory Board. I would never have imagined these roles for myself before these women stepped into my life. 

I owe immense gratitude to Amy, Siobhan, and all the women who have supported, guided, and protected me as I found my confidence in research. It feels important to name their impact, because without Amy, I would never have known this world existed. They not only opened doors for me, but they walked through them beside me, often turning back on their own path to hold my hand as I stepped onto mine.

Trauma-informed consultations ensure that the voices of those directly impacted are heard in a way that prioritises their safety and promotes trust. They also create opportunities to include voices that may otherwise be underrepresented, including young women from marginalised and disadvantaged communities. Traditional consultation approaches can unintentionally recreate power imbalances or contribute to distress and disengagement. In contrast, trauma-informed consultation recognises the impact of trauma and acknowledges that individuals often carry complex and intersecting experiences that influence how they engage with services. 

Trauma-informed approaches also create environments where experiences can be shared in a way that protects and supports the individual, rather than defining them solely by what has happened to them. This in turn leads to more effective, responsive, inclusive and protective services, while also helping to rebuild trust in systems that many young women may have previously felt excluded or harmed by. It ultimately helps to ensure resource development moves beyond tokenistic engagement and creates supports that reflect the realities and needs of the people it is intended to benefit.  

A lived experience researcher role places lived and living experience at the centre of their work, with that perspective being intentionally recognised as a form of expertise that influences the research process. It is not just about having personal experience of an issue, rather it is about using that expertise alongside research skills to inform the design, methods, interpretation and translation of findings in ways that are reflective of an individual or communities’ reality. 

A researcher who happens to have lived experience in their area of research may bring a personal perspective, but their lived experience is not necessarily defined or a central component of their role. Their expertise may primarily sit within traditional academic or professional pathways, with personal experience being an additional perspective rather than a core methodology. Importantly, lived experience researchers also carry a unique layer of emotional labour, often significantly engaging with personal and collective trauma while holding space for others and translating those experiences into systemic change. Academic researchers with personal experience may draw on those perspectives at times, but they are not typically expected to continually engage or carry the emotional and relational impact of lived experience as a core part of their professional role.  

It is also important to clarify that this distinction is not about one role being more valuable than the other. Both bring important expertise. The difference is that lived experience research intentionally recognises lived experience as an essential form of knowledge and acknowledges the unique responsibilities and emotional work that often comes with it. 

Lived experience perspectives bring an understanding that cannot be captured through data, clinical knowledge, or academic theory alone. People with lived experience offer insight into the realities of navigating systems, the barriers and challenges that exist, what supports are safe and effective, and where services and resources may unintentionally fall short. 

The inclusion of lived experience perspectives also helps shift research from asking ‘What is wrong with this community?’, to ‘What has happened to people, what do they need, in what way do they need it, and what actually works?’. It aids to challenge assumptions and bias, highlight gaps that may otherwise be overlooked, and makes sure research reflects the complexity of real life rather than simplified narratives.  

The most important point, however, is that including lived experience moves research beyond studying people to working alongside them. This creates findings, policies, services and resources that are more relevant and responsive and, ultimately, more likely to improve outcomes. 

I would like everyone to understand that lived experience is not just a story, a perspective, a nice add on or a box to tick. It is an expertise that has often been gained through pain, resilience, survival, and navigating systems that were not built with us in mind. 

For many people, sharing lived experience means reopening parts of themselves they have worked incredibly hard to heal from. It can mean carrying the emotional weight of memories, vulnerability, exposure, and experiences that do not neatly switch off when the consultation, interview, meeting or research project ends. People are not leaving their experiences at the door when they participate, they also take them home with them.  

I would want people to understand that if you value lived experience, you need to value the people behind it. Support us. Protect us. Pay us. Build in appropriate wellbeing supports, create spaces that are safe and trauma informed, and recognise the emotional labour that often comes from translating significantly personal experiences into knowledge that has the power to influence system and service change. Too often lived experience is celebrated in words but undervalued in practice. 

Interested in learning more about Kiara’s work? Expressions of Interest are open for schools to work with respectED, and you can learn more about our lived experience work, including the GLEE/LEARN, on our website.