Researching With Lived Experience: A Shared Critical Reflection Between Co-Researchers

Abstract

This paper draws together critical learnings from diverse qualitative health research projects in Australia that sought to shift power and focus on the strengths and expertise of people with lived experience who are involved as co-researchers. These projects have included exploring and challenging identities, understanding experiences in treatment programs, critiquing and designing/re-designing services, and sharing experiences with the wider community in novel and innovative ways. Lived experiences included alcohol and other drug dependency, mental health, domestic, family or sexual violence, and living with HIV. This paper provides important learnings and actions about partnering with co-researchers with lived experience. In this paper we draw on a process of reflective discussions that occurred over six months with fortnightly online meetings between co-researchers, including co-authors with lived experience external to academia and university-based researchers, some of whom also have lived-experience that intersects with their research. From this, we distilled key learnings across seven themes: (1) the ethics of ethics, which highlights a need for constant reflection on the ethical issues in co-research; (2) recruiting co-researchers, which focuses on ensuring and integrating a diversity of voices; (3) creating safety for all, which must be a priority of engagement and support self-determination; (4) supporting different ways of partnering, which emphasises the need for diverse roles and ways to contribute on research teams; (5) capacity building and training, which requires ongoing evaluation of needs and tailored responses; (6) positioning, which highlights the need to transition from the idea of vulnerability to a strengths-based perspective of lived experience; and (7) power plays, reflecting the need to disrupt the dynamics and established hierarchies of privileging certain forms of knowledge and expertise. The paper includes recommendations for action against these seven themes.