Little M, Jordens C F, Paul K, Montgomery K, Philipson B
Department of Surgery, University of Sydney, Australia.
Soc Sci Med. 1998 Nov;47(10):1485-94. doi: 10.1016/s0277-9536(98)00248-2.
Narrative analysis is well established as a means of examining the subjective experience of those who suffer chronic illness and cancer. In a study of perceptions of the outcomes of treatment of cancer of the colon, we have been struck by the consistency with which patients record three particular observations of their subjective experience: (1) the immediate impact of the cancer diagnosis and a persisting identification as a cancer patient, regardless of the time since treatment and of the presence or absence of persistent or recurrent disease; (2) a state of variable alienation from social familiars, expressed as an inability to communicate the nature of the experience of the illness, its diagnosis and treatment; and (3) a persistent sense of boundedness, an awareness of limits to space, empowerment and available time. These subjectivities were experienced in varying degree by all patients in our study. Individual responses to these experiences were complex and variable. The experiences are best understood under the rubric of a category we call "liminality". We believe that all cancer patients enter and experience liminality as a process which begins with the first manifestations of their malignancy. An initial acute phase of liminality is marked by disorientation, a sense of loss and of loss of control, and a sense of uncertainty. An adaptive, enduring phase of suspended liminality supervenes, in which each patient constructs and reconstructs meaning for their experience by means of narrative. This phase persists, probably for the rest of the cancer patient's life. The experience of liminality is firmly grounded in the changing and experiencing body that houses both the disease and the self. Insights into the nature of the experience can be gained from the Existentialist philosophers and from the history of attitudes to death. Understanding liminality helps us to understand what it is that patients with cancer (and other serious illnesses) seek from the system to which they turn for help. Its explication should therefore be important for those who provide health care, those who educate health care workers and those concerned to study and use outcomes as administrative and policy making instruments.
叙事分析作为一种考察慢性病患者和癌症患者主观体验的方法,已得到广泛认可。在一项关于结肠癌治疗结果认知的研究中,我们惊讶地发现,患者在记录其主观体验时,始终如一地提到了三个特定的观察结果:(1)癌症诊断的直接影响以及持续被认定为癌症患者,无论治疗后的时间长短以及是否存在持续性或复发性疾病;(2)与社会熟人的疏离状态各异,表现为无法传达疾病经历、诊断和治疗的本质;(3)持续的受限感,即对空间、自主权和可用时间有限的意识。我们研究中的所有患者都不同程度地经历了这些主观性。个体对这些经历的反应复杂多样。这些经历最好在我们称之为“阈限状态”的类别框架下理解。我们认为,所有癌症患者都会进入并经历阈限状态,这一过程始于其恶性肿瘤的最初表现。阈限状态的初始急性期以迷失方向、失落感和失控感以及不确定感为特征。随后是适应性的、持久的阈限暂停期,在此期间,每个患者通过叙事为自己的经历构建和重构意义。这个阶段可能会持续癌症患者的余生。阈限状态的体验深深植根于承载疾病和自我的不断变化和体验着的身体之中。从存在主义哲学家以及对死亡态度的历史中可以获得对这种体验本质的洞察。理解阈限状态有助于我们理解癌症患者(以及其他重症患者)向其求助的系统所寻求的东西。因此,对阈限状态的阐释对于提供医疗保健的人员、教育医护人员的人员以及关注将结果作为行政和决策工具进行研究和使用的人员来说应该很重要。