Digestive Disease Center, Bispebjerg Hospital, Bispebjerg Bakke 23, 2400, Copenhagen, Denmark.
Department of Surgery Rigshospitalet, Inge Lehmans Vej 7, 2100, Copenhagen, Denmark.
Eur J Oncol Nurs. 2020 Feb;44:101717. doi: 10.1016/j.ejon.2019.101717. Epub 2019 Dec 23.
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.
A qualitative study using semi-structured, individual interviews. Data were analysed using content analysis.
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 assessment of their needs. "Lonesome worrying" meaning that caregivers hid their feelings of concern and foreboding, and finally, "Keeping a stiff upper lip" indicating that caregivers outwardly maintained a positive face when interacting with the patient.
Caregivers described taking on a substantial burden of care without feeling competent. They experienced 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.
癌症患者的照料者在整个治疗过程中扮演着重要的角色。这可能具有挑战性，并可能暗示健康和心理社会问题。对于那些患有胰腺癌、十二指肠癌和胆管癌等复发风险较高的癌症的患者的照料者来说，情况尤其如此。因此，本研究探讨了在完成有治愈意图的治疗后，接受随访的这些癌症患者的照料者的经历。
采用半结构式个体访谈的定性研究。使用内容分析法对数据进行分析。
10 名在丹麦首都地区一家三级医院的专门胃肠外科中心接受治疗后完成治愈性治疗的胰腺癌、十二指肠癌和胆管癌患者的照料者参加了研究。我们确定了三个主题：“从旁观者到应征的照顾者”，这意味着照顾者在治疗和随访期间感到被征召为照顾者，但没有得到足够的指导或评估他们的需求。“孤独的担忧”，意味着照顾者隐藏了他们的担忧和恐惧，最后，“保持坚强的外表”，表明照顾者在与患者互动时表面上保持积极的态度。
照料者描述了在没有感到有能力的情况下承担了大量的护理负担。他们经历了痛苦和情感上的孤立，这影响了他们与患者的关系和他们的相互应对。研究结果表明，医疗保健专业人员需要在整个治疗过程中促进对患者和照料者的需求和角色的反思。
