Goals of work: This paper presents findings from a qualitative study investigating service users' experiences of a patient information pathway after a diagnosis of cancer.
Materials and methods: Patients (27) and relatives (20) were recruited from two identified Cancer Network sites representing a pathway that had been information mapped (Lung) and one which had not (Head and Neck). Respondents participated in up to three qualitative interviews in the year after diagnosis.
Main results: The need for information in response to serious health problems has become widely accepted. Providing cancer patients and their carers with high-quality information throughout their care pathway is a policy priority. However, the study findings contribute to a growing body of evidence that far from embracing the active role of "expert patient", many patients continue to prefer verbal to written information, to trust in health professionals as their primary and preferred source of information, and to be quite cautious and selective about what they want to know about their illness.
Conclusions: Good information is regarded as a prerequisite for informed decision making and a primary means of coping with the stress of illness. However, patient attitudes to information are complex and encompass resistance, ambivalence and indifference, active engagement and interest. The study findings reinforce the need for health professionals to develop competence as skilled communicators, and for efficient local systems of information transfer between service agencies and health professionals as prerequisites for delivery of the timely, tailored and personalized information which patients require.