Faculty of Humanities, Universitat Internacional de Catalunya, Josep Trueta s/n, 08195 Sant Cugat del Vallès, Barcelona, Spain.
School of Medicine and Health Sciences, Universitat Internacional de Catalunya, Josep Trueta s/n, 08195 Sant Cugat del Vallès, Barcelona, Spain.
BMC Palliat Care. 2022 Jun 1;21(1):97. doi: 10.1186/s12904-022-00984-7.
In the context of life-threatening illness, loss of control is argued as a source of suffering and loss of perceived dignity, whereas having control over the dying process has been seen as a way of maintaining personal independence. Little is known about the meaning of control from the patients' perspectives. Thus, the aim of this study was to explore how patients with advanced cancer understand control, in terms of underlying beliefs, attitudes, and expectations consistent with self-efficacy, in different dimensions of their life, their illness, and their healthcare.
We conducted semi-structured qualitative interviews using an interpretive phenomenological analysis approach. Patients with advanced cancer from an oncology unit and a palliative care unit from Barcelona (Spain) were recruited. The inclusion criteria were a) ≥ 18 years old; b) fluency in Spanish or Catalan; c) outpatients diagnosed with advanced cancer; d) Eastern Cooperative Oncology Group (ECOG) between 0 and 3; e) judged by their physician or nurse to be emotionally stable; f) considered to have control over their illness and circumstances according to their responsible physician; and g) signed informed consent.
We interviewed eight participants (ages ranged from 29 to 70 years, six were female). Two themes were identified: 1) factors that influence the perception of control, with subthemes: uncertainty about future suffering, character traits underlying a need for control; sense of lack of care as a source of loss of control; and 2) perceiving control over an uncontrollable illness, explained by perceived control over subjective wellbeing and adjusting the focus of control. The data allowed us to identify strategies that promote a sense of control in these patients.
The illness, according to the participants, was experienced as series of losses. However, attention was often focused on areas where they continued to have control. These findings selectively reflect experiences of those who see themselves able to effect outcomes in life, suggesting future research should address how both family members and healthcare professionals can help to empower all patients.
在危及生命的疾病背景下，失去控制被认为是痛苦和失去感知尊严的根源，而对临终过程的控制被视为保持个人独立性的一种方式。然而，从患者的角度来看，人们对控制的意义知之甚少。因此，本研究的目的是探讨晚期癌症患者如何理解控制，包括与自我效能一致的潜在信念、态度和期望，以及他们生活、疾病和医疗保健的不同方面。
我们采用解释现象学分析方法进行半结构化定性访谈。从巴塞罗那（西班牙）的肿瘤病房和姑息病房招募了晚期癌症患者。纳入标准为：a）≥18 岁；b）西班牙语或加泰罗尼亚语流利；c）被诊断为晚期癌症的门诊患者；d）东部合作肿瘤组（ECOG）评分为 0-3；e）根据他们的医生或护士判断，情绪稳定；f）根据他们的主治医生，认为他们对自己的疾病和情况有控制能力；g）签署知情同意书。
我们采访了 8 名参与者（年龄从 29 岁到 70 岁不等，6 名女性）。确定了两个主题：1）影响控制感的因素，包括子主题：对未来痛苦的不确定性、控制需求的性格特征；缺乏关怀感是失去控制的根源；2）感知对不可控疾病的控制，这可以通过感知对主观幸福感的控制和调整控制焦点来解释。这些数据使我们能够确定在这些患者中促进控制感的策略。
根据参与者的说法，疾病是一系列损失的体验。然而，他们的注意力往往集中在他们仍然能够控制的领域。这些发现选择性地反映了那些认为自己能够影响生活结果的人的经历，这表明未来的研究应该解决家庭成员和医疗保健专业人员如何帮助赋予所有患者权力的问题。
