From Surviving to Living (on): A Grounded Theory Study on Coping in People with Pancreatic Cancer

Little research has been conducted on the experience of pancreatic cancer from a patient's perspective. Several factors suggest that trajectory models of chronic illness or other cancers cannot be applied to pancreatic cancer. Within this grounded theory study, 26 problem-centred interviews were conducted with people with pancreatic cancer from Germany. A cancer-specific trajectory model was developed, depicting both curative and palliative courses. Two successive phases form the core: Immediately after diagnosis, there is an acute phase in which patients focus on mere survival, attempt to overcome the short-term consequences of pancreatic cancer and search for information. This initial phase is followed by a circular phase of living on with pancreatic cancer, characterized by adaptation to the long-term consequences of the disease and a repeated experience of fear of recurrence or progression and threat in the context of follow-up examinations. Understanding disease trajectories from a patient's perspective enables health professionals better to understand patients' needs, concerns, and fears and better support them in coping. Trial registration: German Clinical Trials Register, DRKS00020251, 13.01.2020.