The hopes of the dying: Examining patients' experience of participation in early phase cancer clinical trials

Abstract

This paper presents a theoretical examination of the key findings from a longitudinal qualitative study of the experience of cancer clinical trial participation. The aim of the study was to identify the psychosocial impact of participating in early phase trials as experienced by the patients themselves; it sought to discover and interpret their ways of coping with what was happening to them and identify the meaning and consequences of trial involvement. The picture of trial involvement that emerged from the study was of a dynamic and changing experience that had a different impact and meaning for patients as they progressed through the trial process. When reflecting on the stories and experiences presented by those interviewed, the importance of two major themes in relation to how patients experienced trial involvement began to emerge: hope and dying. In order to explore and examine further the patients' trial experience revealed by this research, some of the theoretical perspectives on the emergent themes of hope and dying are examined and discussed. By engaging with some of the current theories on dying and hope and applying these to key points in the trial experience, an attempt is made in this paper to explain patients' behaviour in, and experience of, clinical trial participation.