Abstract
BACKGROUND: Waiting is an important topic in healthcare debates, mostly discussed in the form of waiting lists and waiting times. In this discourse, the experiential element of waiting stays hidden. Understanding the waiting experiences of patients can help to better understand healthcare waiting practices, which have a large impact on patients. METHODS: We performed a thematic analysis on 12 patients' books of women with breast cancer. We focused on the theme of waiting within these stories, through an abductive analysis. RESULTS: We identified three themes within the waiting practices of patients with breast cancer: (1) Thickening of time, (2) contaminated time and (3) navigating time. The theme thickening of time highlights waiting moments where time is experienced as moving at a very slow pace with intense emotional impact. The theme of contaminated time highlights the waiting processes as an ongoing component of experiencing illness. The theme of navigating time highlights patients' temporal agency, showing their waiting work in the form of strategies for dealing with practical and emotional aspects of waiting. DISCUSSION: The waiting experiences of patients provide insights into the burden of waiting, which is partly connected to the way healthcare services are organised and the experience of illness. Understanding these multifaceted experiences of patients helps pinpoint areas for healthcare quality improvement. PATIENT OR PUBLIC CONTRIBUTION: The choice for the theme and approach of this research, waiting, was developed with a citizen science initiative of collecting patient stories.