A126
A narrative study of the experiences of young people from first symptoms to the diagnosis of cancer
Susie Pearce1, Faith Gibson2, Tim Eden3, Adam Glaser4, Louise Hooker5, Jeremy Whelan1, Daniel Kelly6
1UCL Hospitals NHS Foundation trust, London, UK, 2Great Ormand Street Hospital for Children NHS Trust, London, UK, 3University of Manchester, UK, 4Leeds Teaching Hospitals NHS Trust, Leeds, UK, 5Southampton General Hospitals, Southampton, UK, 6Middlesex University, London, UK
The difficulties of a prompt diagnosis in young people is thought to be a contributing factor to poor outcomes in this age group when compared to people who are younger or older. There is little research focusing on the period leading to diagnosis. This study aimed to understand the pre-diagnostic and diagnostic phase of cancer, reported as near as possible to the time of diagnosis by the young people themselves.
Twenty four people between the ages of 16 and 24, who were between two to four months from first diagnosis with a solid tumour, were recruited to the study from four principal treatment centres in England. Narrative interviews were undertaken as well as a documentary analysis of the medical notes. Data were analysed to examine how these narratives were structured and connected to broader contextual issues concerning cancer in this age group and the negotiation of entry into the health care system.
Shared themes within these narratives shaped a group narrative and an emerging conceptual framework. This included the individuals perception of, and meaning given to, their symptoms; the impact of others in supporting the perception of threat; the negotiation of generalist health care and entrance into specialist care. A narrative of diagnostic delay was evident in these stories, impacting upon both identity and biography.
The experience of the time from first symptoms to diagnosis was revealed to be complex and multidimensional, incorporating many factors. This paper will present key findings of this study with the aim of sharing the young peoples accounts of being diagnosed with cancer. The study offers new insights into the experiences of young people from their first symptoms to an eventual diagnosis of cancer. These insights are important for future service developments as well as in policy, practice and research.
