Challenges Faced by Patients With Pancreatic Cancer and Their Caregivers

Patients with advanced pancreatic ductal adenocarcinoma (PDAC) and their families encounter challenges that extend beyond disease management, encompassing informational gaps, cultural barriers, and unmet psychosocial needs. Despite interest in improved quality of life (QoL) for cancer patients, few studies have examined the perspectives of PDAC patients and their caregivers on what constitutes effective, compassionate care, especially following the COVID-19 global pandemic, a period characterized by delayed screening and treatments and an overburdened health care system. The purpose of this study was to explore factors associated with perceived QoL among patients diagnosed with PDAC living in Southern California and their caregivers. This exploratory qualitative study was conducted in 2024 to 2025 using theming and content analysis. Semistructured interviews with 21 adults, including patients diagnosed with PDAC and family caregivers, explored their experiences with diagnosis and treatment. Interviews were audio-recorded, transcribed, and analyzed. Constant comparative analysis to identify major themes and subthemes was used, and inductively derived codes were matched to components of the ARC (Adversity, Restoration, Compatibility) conceptual framework. The analysis yielded four major themes: (1) Patient experience and medical journey characterized by delays, family support and spiritual insights; (2) Health care navigation and barriers included delays, financial strain, and challenging interactions with health care personnel; (3) End-of-life conversations and palliative care were often misunderstood; (4) Suggestions for health care providers emphasized the need for a holistic approach and practical resources. The resulting themes fit well into an adaptation of the ARC framework. Patients of Latino background living in Southern California with advanced PDAC desire holistic, culturally responsive, patient-centered care delivered with clarity and compassion. Using the suggested conceptual model, providers may improve patient experiences and QoL.

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Publication Details

Journal
Journal of Hospice and Palliative Nursing
Published
2026-10-07
DOI
https://doi.org/10.1097/njh.0000000000001272
Primary Topic
Cancer survivorship and care
Type
article
Field-Weighted Citation Impact
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article

Challenges Faced by Patients With Pancreatic Cancer and Their Caregivers

Nikhil Ravi Thiruvengadam, Joel Brothers, Paul Leonor, Maud Joachim-Célestin et al.
Journal of Hospice and Palliative Nursing
Cancer survivorship and care
article

Challenges Faced by Patients With Pancreatic Cancer and Their Caregivers

Nikhil Ravi Thiruvengadam, Joel Brothers, Paul Leonor, Maud Joachim-Célestin, Arman Bahmani, Emmanuel Eguia, Susanne Montgomery, Kendrick Che, Lizbeth Rivas, Andrew Chang, Gina Mohr, Nishita Matangi, Jessica Stern
article en

Abstract

Patients with advanced pancreatic ductal adenocarcinoma (PDAC) and their families encounter challenges that extend beyond disease management, encompassing informational gaps, cultural barriers, and unmet psychosocial needs. Despite interest in improved quality of life (QoL) for cancer patients, few studies have examined the perspectives of PDAC patients and their caregivers on what constitutes effective, compassionate care, especially following the COVID-19 global pandemic, a period characterized by delayed screening and treatments and an overburdened health care system. The purpose of this study was to explore factors associated with perceived QoL among patients diagnosed with PDAC living in Southern California and their caregivers. This exploratory qualitative study was conducted in 2024 to 2025 using theming and content analysis. Semistructured interviews with 21 adults, including patients diagnosed with PDAC and family caregivers, explored their experiences with diagnosis and treatment. Interviews were audio-recorded, transcribed, and analyzed. Constant comparative analysis to identify major themes and subthemes was used, and inductively derived codes were matched to components of the ARC (Adversity, Restoration, Compatibility) conceptual framework. The analysis yielded four major themes: (1) Patient experience and medical journey characterized by delays, family support and spiritual insights; (2) Health care navigation and barriers included delays, financial strain, and challenging interactions with health care personnel; (3) End-of-life conversations and palliative care were often misunderstood; (4) Suggestions for health care providers emphasized the need for a holistic approach and practical resources. The resulting themes fit well into an adaptation of the ARC framework. Patients of Latino background living in Southern California with advanced PDAC desire holistic, culturally responsive, patient-centered care delivered with clarity and compassion. Using the suggested conceptual model, providers may improve patient experiences and QoL.

Journal of Hospice and Palliative Nursing
Loma Linda University Medical Center (US), University of America (US), Loma Linda University (US), Loma Linda University Health Care (US)
Openalex Percentile: Top 16%
Cancer survivorship and care
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