Breast Cancer Patients’ Experiences with Information and Communication in Cancer Disease Trajectories

Abstract

Patients’ experiences have been used as an indicator for hospital quality for a long time. The concept of patient experiences has many facets. One aspect of particular importance for optimal treatment and patients’ quality of life is efficient and understandable information and communication between patients and health professionals. In this paper, we look closer into patients’ experiences in breast cancer care by following patients through their narratives related to their treatment trajectory 7–8 years after diagnosis. The specific aim has been to explore their perceptions and experiences regarding received information from and communication with health professionals during their breast cancer disease trajectory in a long-term perspective. Findings show that even though the participants expressed high levels of satisfaction with care, they also highlighted elements that they experienced as problematic during their treatment trajectory. Three major themes emerged: 1) the need to be taken seriously and for immediate action; 2) evolving information needs across stages of treatment; and 3) finding the right network.