Exploring the Lived Experience of Cancer Patients in Early-Phase Clinical Trial Participation

Abstract

Cancer clinical trials represent a critical intersection of medical innovation and patient decision-making, particularly in early-phase studies where therapeutic outcomes remain uncertain. Despite increasing interest in patient-centered research, little is known about how individuals personally interpret their involvement in experimental oncology trials. The subjective meanings behind trial participation remain underexplored, raising the question: how do patients make sense of their experiences when engaging in early-phase cancer trials? This study uses an interpretative phenomenological approach (IPA) to uncover the lived meanings patients assign to trial participation under conditions of uncertainty. Through in-depth semi-structured interviews with six adult cancer patients (aged 38–67 years; 4 females, 2 males) undergoing early-phase trials at two urban academic medical centers in the United Kingdom, four key themes emerged: hope amid uncertainty, emotional ambivalence, moral complexity in decision-making, and identity redefinition. All interviews were conducted in private consultation rooms within oncology departments, audio-recorded, transcribed verbatim, and analyzed thematically using IPA procedures to capture the richness of subjective experience. The results reveal that trial participation functions not merely as a medical process, but as a transformative process shaped by personal belief systems, evolving expectations, and surrounding social frameworks.These findings deepen our understanding of patient agency, ethics, and emotional resilience in experimental cancer treatment. They also suggest that future trial designs and consent procedures should incorporate the lived narratives of patients to ensure more humane and ethically responsive research practices.