Department of Social Sciences and Health Policy, Wake Forest School of Medicine, Medical Center Blvd, Winston-Salem, NC, 27157, USA.
Division of Hematology-Oncology, University of Florida College of Medicine, 2000 SW Archer Rd, Gainesville, FL, 32608, USA.
Support Care Cancer. 2019 Jan;27(1):321-328. doi: 10.1007/s00520-018-4330-y. Epub 2018 Jun 29.
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.
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.
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.
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.
胰腺癌患者及其照顾者的生活质量（QOL）体验尚未得到充分了解。心理困扰程度较高，但很少有研究探讨与心理困扰相关的因素。本研究的目的是从患者和照顾者的角度更深入地了解与心理困扰相关的因素。
20 名参与者（13 名患者，7 名照顾者）就胰腺癌患者的生活经历进行了小组讨论。参与者使用摄影作品方法拍摄了照片，并提供了描述他们所经历的困扰的叙述。使用主题分析对参与者制作的照片和小组讨论记录进行分析，以确定关键主题。
尽管患者和照顾者的角色不同，但他们的困扰来源存在共同点。研究结果揭示了四个主要困扰领域：意外诊断为晚期癌症、角色和身份的变化、体重减轻和胃肠道问题的管理、对未来的恐惧。参与者还讨论了一些独特的观点，如胰腺癌的耻辱感和照顾者的内疚感。
摄影作品为胰腺癌患者及其照顾者的生活提供了独特的视角。我们的研究结果通过更好地了解胰腺癌困扰相关的因素，为当前文献中的空白做出了贡献。我们还确定了一些改善癌症护理的临床建议和未来研究的方向。
