The patient's perspective - A qualitative study of acute myeloid leukaemia patients' need for information and their information-seeking behaviour

In recent years there has been an increased focus on cancer patients' information needs. The majority of the studies have led to the conclusion that most patients want as much information as possible about their disease and treatment. These studies have been large survey studies, and most of the patients enrolled in them have been out-patients. Very little is known about the information needs of severely ill cancer patients being treated as in-patients-such as those with acute myeloid leukaemia (AML). As part of a larger study dealing with AML patients' illness narratives, this work describes the information needs from the patients' perspective and their information-seeking behaviour. In-depth ethnographic interviews were conducted with each of 21 patients on two occasions: at the time of diagnosis and again 2-5 months later. Most patients did not recall much information from the time of diagnosis, except the diagnosis itself and the feelings it had aroused in them. All patients had basic medical knowledge about their disease. However, many patients-especially the elderly-expressed no need to receive further medical details about their disease. Avoiding information, in particular about the prognosis, was explained as a strategy to maintain hope. Most patients attached more importance to information about problems affecting their everyday life and how other persons had coped with their illness. They did not seek medical information on their own, although especially younger patients expressed the feeling that they "ought" to do this. There was a discrepancy between their expressed attitudes regarding the need for medical information in general and their actual information-seeking behaviour. Being informed and seeking information are discussed as society's expectations of today's cancer patient.