The Need for an Interpersonal and Institutional Ethic of Care when Working Alongside Lived Experience Researchers: “For me there’s no <i>lived</i> , it’s always <i>living</i> ”

Lived experience (LE) researchers are often lay people who work alongside academics to undertake research within their own communities, particularly in the fields of health and social inquiry. High-quality and rigorous LE research can lead to local, national and international policy and practice impacts; however, if managed poorly, the involvement of LE researchers has the potential to be extractive, inequitable and disempowering. There is a need to understand how universities can support more sustainable and enduring forms of co-investigation with LE researchers. This qualitative research study utilised a phenomenological approach and reflexive thematic analysis in order to understand the lived experiences of LE researchers. Sixteen former and current LE researchers who worked with researchers from an Australian university participated in face-to-face and online semi-structured interviews between May to July 2024. We identified six key themes: (1) LE researchers are motivated to create change; (2) LE research can be both rewarding and taxing; (3) trust must be earned, nurtured and reciprocated; (4) power sharing is less important than responsible leadership; (5) LE research is a methodology NOT a ‘fashion’; and (6) an institutional ethic of care is critical. A social ecological model is used to discuss the implications of the findings at an intrapersonal, interpersonal, institutional and policy level. Given participation has become the new zeitgeist and involvement of people with LE in research is fast becoming a prerequisite for some funding streams, it is important to intentionally establish foundational building blocks supporting the ethical and equitable participation of LE researchers across the social ecological model.