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

- Two main types of information: professional and experiential, were used by patients and carers, drawn from a range of sources.
- Information received at diagnosis appeared to contribute to an 'illusion of certainty' that life would return to normal at the end of treatment. However the reality for many was one of uncertainty.
- The findings suggest that health professionals need to situate information in the context of the individual's understanding and prior knowledge of health and illness.
- There is a clear need for continuity and supportive care beyond treatment and into the follow-up phase.

PurposePatients 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.MethodThe 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.ResultTwo 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.ConclusionThe 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.