Lifeworld-led research: a phenomenological approach to grant experts by experience in vulnerable positions their right to participate in healthcare research

PURPOSE: We advocate for a phenomenological lifeworld-led research approach that provides ontological and epistemological foundations for an open methodology that emphasizes the in-depth exploration of human phenomena. This approach invites multiple perspectives to facilitate meaningful, equitable participation of 'experts by experience.' We caution against superficially designating participants as "co-researchers," as this might obscure underlying power imbalances. METHODS: Drawing from Husserl, Merleau-Ponty, and Gadamer, we outline a theoretical framework for lifeworld-led research. This methodology prioritizes open-ended data collection methods, including interviews, observations, written narratives, and supplementary approaches (visual tools, dialogue cards). Reflective, rigorous meaning analysis-rather than content analysis-guides interpretation to capture the complexity of participants lived experiences. RESULTS: This methodology requires adopting an attitude of open awareness, described as a "bridled" attitude, whereby researchers deliberately slow their understanding to avoid prematurely drawing conclusions. While universal meanings (meaningfulness, love, respect) may be shared, individuals uniquely experience these phenomena. Rather than homogenizing patient groups, we recognize that patients with similar diagnoses may share experiences while maintaining distinct, individual insights. DISCUSSION: Our approach clearly delineates the roles of professional researchers' and 'experts by experience.' The lifeworld-led approach utilizes participants as "experts by experience," explicitly acknowledging inherent contradictions and complexities while avoiding overpowering their voices.