Shilling Valerie, Starkings Rachel, Jenkins Valerie, Fallowfield Lesley
Sussex Health Outcomes Research and Education in Cancer, Brighton and Sussex Medical School, University of Sussex, Falmer, Brighton, BN1 9QG, UK.
J Cancer Surviv. 2017 Oct;11(5):590-603. doi: 10.1007/s11764-017-0628-x. Epub 2017 Jul 18.
The aim of this study was to explore the impact of extended cancer survival on broader aspects of life and wellbeing such as occupational, financial and family life for patients with advanced cancer and their nominated informal caregivers.
In-depth qualitative interviews were transcribed verbatim. A thematic framework was developed from an initial process of open coding and tested iteratively as new data were collected.
Twenty-four patient-caregiver dyads with advanced ovarian (9), melanoma (9) or lung cancer (6). Patients were aged 39-84 (median 62 years) and caregivers 19-85 (median 54 years). Caregivers were the partners/spouses (15), children (5), siblings (2) and friends (2) of patients. One particular theme, 'uncertainty', encompassed many issues such as planning for the future, providing for one's family, employment and finances. Uncertainties were related to the timescale and trajectory of the disease and lack of control or ability to make plans. There were marked age effects. Accounts from within the same dyad often differed and patients and caregivers rarely discussed concerns with each other.
Both patients and their informal caregivers were challenged by the uncertainties around living with advanced cancer and the lack of a defined trajectory. This impacted many diverse areas of life. Although distressing, dyads seldom discussed these concerns with each other.
Uncertainty is a recurrent issue for cancer survivors and their families impacting broad aspects of their lives and their ability to move forward; however, patients and caregivers in this study rarely discussed these concerns together. Uncertainty should be discussed periodically, together, and healthcare professionals could facilitate these discussions. The use of one or more 'trigger questions' in clinic appointments may provide an opportunity to start these dialogues.
本研究旨在探讨延长癌症生存期对晚期癌症患者及其指定的非正式照护者生活和幸福感更广泛方面的影响，如职业、财务和家庭生活。
深入定性访谈逐字转录。通过初始的开放编码过程建立了一个主题框架，并在收集新数据时进行反复测试。
24对患者-照护者组合，涉及晚期卵巢癌（9例）、黑色素瘤（9例）或肺癌（6例）。患者年龄在39 - 84岁（中位数62岁），照护者年龄在19 - 85岁（中位数54岁）。照护者为患者的伴侣/配偶（15人）、子女（5人）、兄弟姐妹（2人）和朋友（2人）。一个特定主题“不确定性”涵盖了许多问题，如未来规划、供养家庭、就业和财务。不确定性与疾病的时间尺度和发展轨迹以及缺乏制定计划的控制权或能力有关。存在明显的年龄效应。同一组合中的描述往往不同，患者和照护者很少相互讨论担忧的问题。
患者及其非正式照护者都受到晚期癌症生活不确定性以及缺乏明确发展轨迹的挑战。这影响了生活的许多不同领域。尽管令人苦恼，但组合双方很少相互讨论这些担忧。
不确定性是癌症幸存者及其家人反复面临的问题，影响他们生活的广泛方面以及他们向前迈进的能力；然而，本研究中的患者和照护者很少一起讨论这些担忧。应定期共同讨论不确定性，医疗保健专业人员可以促进这些讨论。在门诊预约中使用一个或多个“触发问题”可能提供开始这些对话的机会。
