From an illusion of certainty into a reality of uncertainty: A longitudinal qualitative study of how people affected by laryngeal cancer use information over time

Abstract

Purpose  Patients diagnosed with laryngeal cancer and their families face unique challenges. Providing information is an essential component of care. However little is known about the way in which they use information. This study aims to explore the different types of information used by laryngeal cancer patients and their carers from diagnosis into the follow up phase.  Method  The study adopted an interpretive longitudinal design using qualitative interviews at two specific time points. Twenty laryngeal cancer patients and 17 carers were interviewed. Data were analysed using Framework Analysis.  Result  Two main categories of information: professional and experiential, were found to be used, drawn from a range of sources. The information received at diagnosis appeared to contribute to an 'illusion of certainty’ that life would return to normal at the end of treatment. However, as patients progressed into follow-up, many were propelled into a 'reality of uncertainty' due to the “disconnect” between the expectations both patient and carer developed from information received over the cancer trajectory.  Conclusion  The findings from this longitudinal study suggest that people affected by laryngeal cancer use two broad categories of information derived from a range of different sources and influenced by their own experiences. Health professionals need to situate information in the context of the individual's understanding and prior knowledge of health and illness to help generate more realistic expectations of treatment outcomes. The level of uncertainty experienced by both patients and their carers after treatment suggests a clear need for continued supportive care.