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

Background
Mortality rates for pancreatic cancer remain high, and people diagnosed in Northern Ireland experience some of the worst five-year survival rates globally. Literature on patients’ experiences is scarce, so their needs are not well understood, but they experience high symptom burden and worse psychological quality of life compared to people with other cancers. It is essential to understand the unique challenges people with pancreatic cancer face to anticipate their needs and develop appropriate support interventions, so that they can maintain better quality of life for as long as possible.

Aim
This study aims to explore experiences of people diagnosed with pancreatic cancer in Northern Ireland and build a theoretical understanding of their journeys.

Methods
A Glaserian grounded theory study design will be adopted, comprised of four phases: 1) A systematic review of literature on experiences of people diagnosed with pancreatic cancer; 2) interviews with people diagnosed with pancreatic cancer; 3) 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.

Discussion
In obtaining in-depth understanding and creating a robust theory to explain the unique experiences of people diagnosed with pancreatic cancer, this study should contribute to future service provision for this patient group, as providers and policy makers will be in a better position to anticipate needs and provide the appropriate care and support to patients on their journeys.