Griffith University, Gold Coast, Queensland, Australia.
Qual Health Res. 2010 Mar;20(3):352-64. doi: 10.1177/1049732309354277. Epub 2009 Dec 2.
In this qualitative study the researchers explored living with cystic fibrosis (CF)-a chronic, life-threatening, life-limiting disease that demands a relentless regime of daily treatment. The unique challenges and issue for care that CF presents were considered. Utilizing a phenomenological perspective, data drawn from unstructured interviews included narratives and drawings contributed by children, adolescents, young adults, and parents-eight families representing nine young people with CF. In line with van Manen's approach, four existentials were used to consider a lifeworld in which notions of time, body, space, and relationship are indelibly altered. From original fright, through ongoing dynamics of fear, fight, flight, form, familiarity, and philosophy, people with CF pursue a future that is threatened and continually redefined. As a result of enhanced understanding, care can be delivered from an empathetic bearing toward those for whom it is not so much a bothersome routine, but a life-and-death imperative.
在这项定性研究中，研究人员探讨了囊性纤维化（CF）患者的生活状况——这是一种慢性、危及生命、限制生命的疾病，需要进行持续的日常治疗。本研究考虑了 CF 带来的独特挑战和护理问题。研究采用现象学的视角，从非结构化访谈中提取数据，包括儿童、青少年、年轻人和父母的叙述和绘画，这些数据来自 8 个家庭的 9 名 CF 患者。根据范梅南的方法，使用了四个存在论来考虑一个生活世界，在这个世界中，时间、身体、空间和关系的概念都被不可磨灭地改变了。从最初的恐惧，到持续的恐惧、战斗、逃避、形式、熟悉和哲学，CF 患者追求的未来受到了威胁，并不断被重新定义。由于对 CF 患者有了更深入的了解，医护人员可以从同理心的角度出发，为患者提供护理，因为对他们来说，这不仅仅是一件麻烦的日常事务，而是生死攸关的大事。
