Understanding the lived experiences of people diagnosed with pancreatic cancer in Northern Ireland: A study protocol for a grounded theory approach

Background: Mortality rates for pancreatic cancer remain high, with some of the worst five-year, global survival rates experienced in Northern Ireland. Literature on patients’ experiences is scarce, so their needs are poorly understood, but they experience high symptom burden and worse psychological quality of life when compared to people with other cancers. There are relatively few publications exploring people’s experiences of pancreatic cancer in general and researchers have highlighted the need for more qualitative research with this population.
Aims: This study aims to explore the experiences of people diagnosed with pancreatic cancer in Northern Ireland and develop a theory to explain the process of their journeys from (pre)diagnosis to survivorship or to end of life.
Methods: This study will adopt a QUAL-qual, simultaneous, mixed-method design. The core method is a Glaserian grounded theory study design, supplemented by an optional Photovoice/participatory photography method. It will comprise four phases: 1) a systematic review of literature on the psychosocial aspects of pancreatic cancer journeys; 2) in-person interviews with people diagnosed with pancreatic cancer; 3) in-person interviews with their care partners; and 4) focus groups with professionals and other stakeholders with insight into these experiences. Theoretical sampling principles and constant comparative analysis will guide recruitment, data collection, and analysis until a mature theory has developed.
Results: Data collection beginning January 2025.
Conclusion: Establishing holistic, in-depth understanding of people’s pancreatic cancer journeys and creating a robust theory that captures this will enable us to better understand and anticipate people’s needs. This theory can inform our priorities for future care and service provision, policy, and research. For instance, it may contribute to the development of appropriate support interventions that assist people to maintain the best possible quality of life for as long as possible, whether during a short-term, terminal illness; treatment journey; or long-term symptom management.