Larsen Janni Lisander, Hall Elisabeth O C, Jacobsen Søren, Birkelund Regner
Section of Nursing, Department of Public Health, Aarhus University, Aarhus, Denmark.
Copenhagen Lupus and Vasculitis Clinic, Rheumatology and Spine Diseases Centre, Rigshospitalet, Copenhagen, Denmark.
Scand J Caring Sci. 2018 Jun;32(2):654-662. doi: 10.1111/scs.12491. Epub 2017 Jul 12.
Systemic lupus erythematosus (SLE) is a highly unpredictable and potentially lethal disease which ultimately challenges identity, future and the meaning of life. In a caring context, the experience of good health is perceived to be a balance between biomedical health and the existential experience of having a good life. This balance is jeopardised in the face of severe chronic illness and leads to extensive suffering if not handled carefully. Research suggests that patients suffering from severe chronic illness need support on an existential level, but also emphasises that, given its elusive nature, caring for the existential dimension is difficult to manage. This paper explores the experience of being diagnosed with SLE as an existential phenomenon. Through repeated phenomenological and hermeneutic interviews with 15 women conducted from 2013 to 2015, data concerning the diagnostic phase of SLE were analysed using Van Manen's phenomenology of practice. The essence was found to be a standstill in life comprehended through three inter-related themes: standing in a swirl of events, standing on uneven ground and standing at a turning point with oneself and others. The paper elucidates how existential life phenomena are lived, during the course of being diagnosed. In conclusion, it provides an ethical awareness of how a standstill in life is lived and of the patients' existential transition during the diagnostic phase. A holistic approach is recommended in caring for patients with SLE.
系统性红斑狼疮（SLE）是一种极难预测且可能致命的疾病，它最终会对患者的身份认同、未来以及生命的意义构成挑战。在关怀的情境中，良好健康的体验被视为生物医学意义上的健康与拥有美好生活的生存体验之间的一种平衡。面对严重的慢性疾病，这种平衡会受到威胁，如果处理不当，会导致巨大的痛苦。研究表明，患有严重慢性疾病的患者在生存层面需要支持，但也强调，鉴于其难以捉摸的性质，关照生存维度很难做到。本文将被诊断为SLE这一经历作为一种生存现象进行探讨。通过在2013年至2015年期间对15名女性进行反复的现象学和诠释学访谈，运用范·曼恩的实践现象学对系统性红斑狼疮诊断阶段的数据进行了分析。其本质被发现是一种生活中的停滞状态，可通过三个相互关联的主题来理解：置身于事件的漩涡中、站在不平的地面上以及与自己和他人处于转折点。本文阐明了在被诊断过程中生存生命现象是如何被体验的。总之，它提供了一种伦理意识，即关于生活中的停滞状态是如何被体验的，以及患者在诊断阶段的生存转变。建议采用整体方法来照料系统性红斑狼疮患者。
