Ellingsen S, Moi A L, Gjengedal E, Flinterud S I, Natvik E, Råheim M, Sviland R, Sekse R J T
Faculty of Health Studies, VID Specialized University, Bergen, Norway.
Department of Global Public Health and Primary Care, University of Bergen, Bergen, Norway.
Med Health Care Philos. 2021 Mar;24(1):35-44. doi: 10.1007/s11019-020-09979-8. Epub 2020 Oct 7.
The number of people who survive critical illness is increasing. In parallel, a growing body of literature reveals a broad range of side-effects following intensive care treatment. Today, more attention is needed to improve the quality of survival. Based on nine individual stories of illness experiences given by participants in two focus groups and one individual interview, this paper elaborates how former critically ill patients craft and recraft their personal stories throughout their illness trajectory. The analysis was conducted from a phenomenological perspective and led to the meaning structure; a quest to find oneself after critical illness. In this structure, illness represented a breakdown of the participants' lives, forcing them to develop a new understanding of themselves. Despite acute illness, they felt safe in hospital. Coming home, however, meant a constant balancing between health and illness, and being either in or out of control. To gain a deeper understanding of the participants' narratives of survival, the meaning structure was developed from a phenomenological life world perspective, Heidegger's concept of homelikeness and Arthur Frank's typologies of illness narratives. In conclusion listening to and acknowledging the patients' lived experiences of critical illness may support the patient efforts to establish the newly defined self and hence be vital for recovery. Phenomenology is one approach facilitating care tailored to the patients' lived experience of critical illness and its aftermaths.
危重症幸存者的数量正在增加。与此同时，越来越多的文献揭示了重症监护治疗后广泛的副作用。如今，需要更多关注来提高生存质量。基于两个焦点小组和一次个人访谈中参与者给出的九个关于疾病经历的个人故事，本文阐述了曾经的危重症患者在整个疾病轨迹中如何构思和重新构思他们的个人故事。分析是从现象学角度进行的，并得出了意义结构；即在危重症后寻找自我的探索。在这个结构中，疾病代表了参与者生活的崩溃，迫使他们对自己形成新的理解。尽管身患重病，但他们在医院里感到安全。然而，回家意味着在健康与疾病之间不断权衡，以及处于可控或失控状态。为了更深入地理解参与者的生存叙事，从现象学的生活世界视角、海德格尔的“家园感”概念和亚瑟·弗兰克的疾病叙事类型学发展出了意义结构。总之，倾听并承认患者在危重症中的生活经历可能会支持患者努力建立新定义的自我，因此对康复至关重要。现象学是一种有助于根据患者在危重症及其后果中的生活经历提供个性化护理的方法。
