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. 2025 Jun;2(2):100153.
doi: 10.1016/j.soi.2025.100153. Epub 2025 May 15.

Unseen burden: Exploring caregiver experiences, barriers, and facilitators in foregut cancer care

Ioannis Liapis  1 , Jaspinder Sanghera  1 , Michelle Holland  1 , Ivan Herbey  2 , Katie West  3 , Martin J Heslin  1 , Krista Mehari  4 , Larry Hearld  5 , Smita Bhatia  6 , Annabelle L Fonseca  1
Affiliations

Unseen burden: Exploring caregiver experiences, barriers, and facilitators in foregut cancer care

Ioannis Liapis et al. Surg Oncol Insight. 2025 Jun.

Abstract

Introduction: Caregivers play a pivotal role in supporting foregut cancer patients, yet their experiences and the challenges they face are overlooked. Understanding caregivers' experiences and the barriers and facilitators they encounter can inform interventions to improve their well-being and, ultimately, patient outcomes. This study focuses on the lived experiences and the interpersonal factors that shape the caregivers' journeys.

Methods: Semi-structured interviews were conducted with caregivers of patients with foregut cancer receiving treatment at a safety-net hospital in the Deep South. Interviews were recorded, transcribed and qualitatively analyzed using NVivo 14 software. Grounded theory methodology was used to guide analysis. Three co-authors independently coded the data, with intercoder agreement of above 90 %.

Results: Of the 15 caregivers interviewed, the majority were female, spouses of the patients, and resided in areas of high socioeconomic deprivation. Three theme categories emerged: caregiver experiences, individual/interpersonal level barriers, and individual/interpersonal level facilitators. Caregivers expressed self-sacrifice and a strong sense of duty, describing caregiving as a priority despite personal hardships. Barriers included psychological distress, financial strain, competing responsibilities, transportation challenges, social isolation, and patient denial. Conversely, facilitators included support from family and friends, religious and spiritual practices, and engagement in support groups.

Conclusion: Caregivers of patients with foregut cancer face significant psychological and financial burden, compounded by competing responsibilities and limited social support. Interventions aimed at reducing caregiver burden and enhancing support mechanisms will improve both caregiver well-being and patient outcomes. Future research should focus on strategies that promote these facilitators and address barriers to caregiving.

Keywords: Caregivers; Foregut Cancer; Qualitative; Social Determinants of Health; South.

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Conflict of interest statement

This study was funded by the NIH K23 MD018383 grant. Annabelle L. Fonseca has received funding from the National Institutes of Health National Institute of Minority Health and Health Disparities and the Department of Defense. Krista Mehari has received funding from the National Institutes of Health National Institute of Minority Health and Health Disparities, the Office of Disease Prevention, and the National Institute of Mental Health. Martin J. Heslin has received payments for electronic consultation from Teladoc, inc.

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