Contents lists available at ScienceDirect European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon From bystander to enlisted carer – A qualitative study of the experiences of caregivers of patients attending follow-up after curative treatment for cancers in the pancreas, duodenum and bile duct Stine Gerhardt a,* , Kristine Elberg Dengsø b , Suzanne Herling c , Thordis Thomsen d a Digestive Disease Center, Bispebjerg Hospital, Bispebjerg Bakke 23, 2400, Copenhagen, Denmark b Department of Surgery Rigshospitalet, Inge Lehmans Vej 7, 2100, Copenhagen, Denmark c The Neuroscience Centre, Rigshospitalet, Blegdamsvej 9, 2100, Copenhagen, Denmark d Herlev and Gentofte Hospital and Department of Clinical Medicine, University of Copenhagen, Denmark ARTICLE INFO Keywords: Caregivers Follow-up Cancer care Surgery Qualitative research ABSTRACT Purpose: Caregivers of patients with cancer play an important role throughout the treatment trajectory. This can be challenging and might infer health and psychosocial problems. This may especially be the case in caregivers of patients with cancers that carry a high risk of recurrence such as cancers of the pancreas, duodenum and bile duct. This study therefore explored the experiences of caregivers of patients attending follow-up after completion of treatment with curative intent for cancers of the pancreas, duodenum and bile duct. Methods: A qualitative study using semi-structured, individual interviews. Data were analysed using content analysis. Results: Ten caregivers of patients attending follow-up after completed curative treatment for cancers of the pancreas, duodenum and bile duct in a specialized gastro-surgical center at a tertiary hospital in the Capital Region of Denmark participated. We identified three themes: “From bystander to enlisted carer”, inferring that caregivers felt enlisted as carers during treatment and follow-up, however without sufficient instruction or as- sessment of their needs. “Lonesome worrying” meaning that caregivers hid their feelings of concern and fore- boding, and finally, “Keeping a stiff upper lip” indicating that caregivers outwardly maintained a positive face when interacting with the patient. Conclusion: Caregivers described taking on a substantial burden of care without feeling competent. They ex- perienced distress and emotional isolation which affected their relationship with the patient and their mutual coping. The results indicate a need for health care professionals to facilitate reflection on the needs and roles of both patients and caregivers throughout the treatment trajectory. 1. Introduction Cancers of the pancreas, duodenum and bile duct (PDB) are char- acterized by late diagnosis, a high risk of recurrence and poor prognosis (Danish Health and Medicines Authority, 2015). Surgical resection is the mainstay treatment and the only approach that currently offers the possibility of cure (Danish Pancreatic Cancer Group, 2015). In Den- mark, the annual incidence of pancreatic cancer is approximately 1000 cases (Danish Cancer Society, Cancer of the pancreas, 2016), cancer of the duodenum 35 cases (Danish Health and Medicines Authority, 2015) and cancers of the bile duct 200 cases (Danish Cancer Society, Cancer of the bile duct, 2016). Patients undergoing surgery for PDB cancers with curative intent attend a follow-up program lasting from 2 to 5 years post-surgery (Danish Health and Medicines Authority, 2015). Given that recurrence rates are high, detection of disseminated disease is a major focus of the program (Danish Health and Medicines Authority, 2015). Presently, support for caregivers accompanying patients through the curative treatment course is not a formal component of the follow- up program (Danish Health and Medicines Authority, 2015). Caregivers of cancer patients play an important role throughout the disease trajectory, and their risk of experiencing health and psychoso- cial problems is well-established with depression, anxiety, feelings of fear and uncertainty being the most prevalent (Stenberg et al., 2010; Li and Loke, 2013). Few studies have specifically explored the experiences and needs of caregivers of patients with PDB cancers receiving curative treatment https://doi.org/10.1016/j.ejon.2019.101717 Received 3 October 2019; Received in revised form 19 December 2019; Accepted 20 December 2019 * Corresponding author. E-mail address: stine.gerhardt.hangstrup@regionh.dk (S. Gerhardt). European Journal of Oncology Nursing 44 (2020) 101717 1462-3889/ © 2019 Elsevier Ltd. All rights reserved. T