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. 2019 Jan;27(1):321-328.
doi: 10.1007/s00520-018-4330-y. Epub 2018 Jun 29.

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

Shan S Wong  1 , Thomas J George Jr  2 , Melyssa Godfrey  3 , Jennifer Le  4 , Deidre B Pereira  5
Affiliations

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

Shan S Wong et al. Support Care Cancer. 2019 Jan.

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.

Keywords: Caregivers; Distress; Pancreatic cancer; Photovoice; Qualitative; Quality of life.

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Conflict of interest statement

Conflict of Interest The authors declare that they have no conflicts of interest.

Figures

Fig. 1
Fig. 1
Make ready for the end. Source. Contributed by patient participant. Used with permission. Note. This photograph of a cemetery depicts the stigma of pancreatic cancer as a death sentence.
Fig. 2
Fig. 2
Can’t I just be me? Source. Contributed by patient participant. Used with permission. Note. This photograph of a patient hidden behind medication bottles depicts the need to maintain sense of self and identity.
Fig. 3
Fig. 3
Where do we begin? We need help! Source. Contributed by caregiver participant. Used with permission. Note. This photograph of a deconstructed motor depicts the feeling of being overwhelmed with the cancer and caregiving experience.
Fig. 4
Fig. 4
Go away. Source. Contributed by caregiver participant. Used with permission. Note. This photograph of dark clouds depicts the lingering fear of losing the patient that is always in the back of the mind of caregivers.
See this image and copyright information in PMC

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