A Grounded Theory of the Lived Experiences of People with Pancreatic Cancer in Northern Ireland: Study Protocol

Background/Objectives: Pancreatic cancer remains highly fatal, often diagnosed late with poor prognoses and worse psychological quality of life compared to other cancers. Globally, it is the twelfth most common cancer but the sixth leading cause of cancer-related deaths, with actual 5-year survival rates below 5%. Northern Ireland's outcomes are among the worst, yet research on people's experiences across the illness trajectory is scarce. Consequently, the unique needs of people with pancreatic cancer are poorly understood. It is crucial we develop deeper understanding of the entire pancreatic cancer journey to address this. This study aims to explore the lived experiences of people diagnosed with pancreatic cancer in Northern Ireland and generate a theory that explains their journeys, from pre-diagnosis through to survivorship or end of life. Methods: This study will adopt a grounded theory approach, incorporating multiple qualitative data generation methods: semi-structured interviews with patients and care partners, and focus groups with professionals. An optional photovoice (participatory photography) method will be offered to participants. Theoretical sampling principles and constant comparative analysis will guide recruitment, data collection, and analysis to ensure the explanatory theory is rooted in participants' lived experiences. Conclusions: Establishing a holistic, in-depth understanding of people's pancreatic cancer journeys will enable us to better comprehend, anticipate, and meet their needs. A theory grounded in empirical data about lived experiences can inform priorities for future care, support services, policy, and research, and contribute to the development of support interventions that help people to maintain the best possible quality of life, whether during a short-term, terminal illness; treatment journey; long-term symptom management; or survivorship.