Patients' experiences of an initial consultation in oncology: Knowing and not Knowing.

Objectives The aim of this paper was to explore how patients experience an initial oncology consultation. This study was part of a larger mixed methods research project designed to address the issue of improving communication and enhancing patient satisfaction with oncology consultations. Design Interpretive phenomenological analysis was used to interpret the participants' meanings of their experiences in their initial consultation. It is an idiographic approach that focuses in depth on a small set of cases in order to explore how individuals make sense of a similar experience. This retains the complexity and diversity of experiences. Methods In the larger study, semi-structured interviews were carried out with 36 patients as soon as possible after a consultation in oncology to explore their experiences. Five cases were selected for this study on the basis of homogeneity; they had all undergone some prior investigations of their illness, and this was their first consultation in oncology; they all provided rich accounts relating to how they had experienced the consultation. Results Patients' experiences of being given their diagnosis differed both between participants and within the same participant. Various defences seemed to be used in order to protect them from fully engaging with the knowledge they were given. Their accounts of what they wished to know in the consultation could be affected by a desire to protect themselves and/or family members from distress and by the practical need to know that may vary over time. Conclusion The complexity of patients' needs and preferences regarding information means that the doctor's role in communicating that information in a patient-centred way is difficult. The findings are discussed in relation to open awareness theory as to how the emotional context of the consultation process affects information needs. Doctors need strategies to elicit information from patients about their needs from the consultation. This needs to be done at the start of consultations and throughout investigations and treatment, as needs may change over time