Using photography to explore psychological distress in patients with pancreatic cancer and their caregivers: a qualitative study.

ABSTRACT

PURPOSE: The quality of life (QOL) experiences of patients with pancreatic cancer and their caregivers is poorly understood. Psychological distress is high, but few studies examine the factors associated with psychological distress. The purpose of this study is to gain a richer understanding of the factors associated with psychological distress from patient and caregiver perspectives. METHODS: Twenty participants (13 patients, 7 caregivers) completed group discussions on the experiences of living with pancreatic cancer. Using photovoice methods, participants took photographs and provided narratives depicting the distress they experienced. Participant-produced photographs and group discussion transcripts were analyzed to identify key themes using thematic analysis. RESULTS: Commonalities between patient and caregiver sources of distress emerged despite their distinct roles. Findings revealed four major areas of distress diagnosis of an unexpected advanced cancer, changes in roles and identity, management of weight loss and gastrointestinal problems, and fear of the future. Participants also discussed unique perspectives such as the stigma of pancreatic cancer and caregiver guilt. CONCLUSIONS: Photovoice provides a unique insight into the lives of patients with pancreatic cancer and their caregivers. Our findings contribute to the gap in the current literature by providing a better understanding of the factors surrounding pancreatic cancer distress. We also identify several clinical recommendations to improve cancer care delivery and areas for future research.