Finding a pathway: Information and uncertainty along the prostate cancer patient journey

Objectives. To investigate the role of information in mediating the potential negative effects of uncertainty in prostate cancer in relation to the individual patient journey, conceptualized as the individual's response to his disease over time. Design. A qualitative methodology was adopted to investigate men's constructions of their experience of information and its changing role in the management of uncertainty along the pathway of care. A cross-sectional design allowed comparison of the responses of men at similar stages and along different time points in the cancer pathway. Data collection was undertaken via focus group discussions and individual interviews. Method. Men from 4 weeks post-diagnosis to palliative care were recruited from hospital out-patient clinic registers and a local support group. Seven focus groups and 22 semi-structured interviews were held involving a total of 22 participants. Transcripts were analysed through a process of theme comparison. Results. Findings suggest that uncertainty is both multifaceted and changing. Its impact is affected by a range of personal, disease related, and social factors. For some men it may bring about positive readjustment rather than a negative response. Effective communication of information by health professionals provides reassurance, knowledge, and understanding the balance of which varies over time and between individuals. Conclusion. Health professionals may contribute to the reduction of the negative effects of uncertainty through communication of information regarding process of care as well as medical issues. Strategies tailored to individual differences in information requirements and to changing needs may facilitate positive adjustment.