How people affected with laryngeal cancer source and use different types of information over time: a longitudinal qualitative study

Abstract

Due to changes in UK and Scottish policy and NHS directives, there have been many changes and improvements in the way information is provided to patients affected by cancer and their families over the last decade. The information provided should be accurate, detailed and tailored to the individual’s needs across the whole of their cancer trajectory. People affected by laryngeal cancer could be classed as a “Cinderella” group as there is a lack of research with this group of patients and their families, in comparison to other types of cancer, even though the impact of treatment can have a profound and debilitating effect on the individual and their family’s quality of life. How this group of patients and their families use and source information to help them make sense of their experiences across their trajectory is unknown, therefore this study explored the role of information based on the experiences of people affected by laryngeal cancer across their cancer trajectory. The study adopted an interpretive prospective longitudinal approach, using two in-depth qualitative interviews with twenty patients and eighteen carers from across the main treatment pathways associated with this type of cancer. The data were analysed using Framework Analysis and influenced by Dingwall’s Illness Action Model. Four broad thematic headings were developed to explain the role of information: “Search for Normality”, “Illusion of Certainty”, “Reality of Uncertainty” and “Culture of Caring”. Relationships were identified between these headings at four key stages across the cancer trajectory. The ii broad theme “Search for Normality” overarched the whole of the cancer trajectory explaining how information was sourced and used to help this group understand their experience of symptoms. The main findings from the study show that two broad categories of information are used: information from health professionals and experiential information from one’s own and others’ experiential knowledge of health and illness. Both categories of information are sourced and used in different ways at different stages over the course of the trajectory and become inextricably linked over time. The study shows that information is not an entity that can be studied on its own but needs to be studied and explained in the ways it is situated, used and experienced within the context of the complex needs and experiences of this group of patients and their families. This study is the first longitudinal study to provide an explanation of the role of information with people affected by laryngeal cancer across their cancer trajectory. The findings show how the different types of information used from the various sources influence how people affected by laryngeal cancer perceive and understand their diagnosis, treatment and the outcome of treatment. The study findings suggest that health professionals need to situate information in the context of the individual’s understanding and prior knowledge of health and illness to ensure that it does not set unrealistic expectations, with a clear need for continuity and supportive care identified in the post-treatment and follow-up phases.