Living with chronic pancreatitis: a qualitative study

Abstract

Objective: Recent literature acknowledges the impact of this progressive and debilitating disease on psychological and social well-being, but the plight of those with chronic pancreatitis remains unknown and hidden. The aim of this study was to develop an understanding of what it means to live with chronic pancreatitis. Design: Qualitative study based on philosophical hermeneutics using multiple unstructured interviews. Participants: Fourteen people with chronic pancreatitis and five relatives took part in 41 interviews in 2007–2008. Setting: Tertiary clinic in Ireland. Results: The meaning of living with chronic pancreatitis for participants in this study is ‘enduring disruption’. Enduring has a two-fold meaning; it symbolises the perpetual or permanent nature of disruption that occurs at physiological, social and psychological levels (i.e., ‘suffering’). Enduring also means ‘to tolerate’ and encompasses how the participants and their families cope and manage the overall transition from well person to a person with chronic pancreatitis. Discussion: This study offers an alternative perspective to previous quality of life research and presents a challenge to the emphasis on management of the pathophysiological processes and treatment of chronic pancreatitis that is decontextualised from the person’s everyday living. Healthcare professionals need to understand and support people with chronic pancreatitis.