Macdonald Kath
Department of Health Sciences, Queen Margaret University College, Edinburgh.
Br J Nurs. 2006;15(10):566-72. doi: 10.12968/bjon.2006.15.10.21134.
Lung transplant for patients with end-stage cystic fibrosis (CF) in the UK is recognized as the only successful treatment for CF patients with advanced lung disease. This study uses an exploratory approach to examine how patients with CF and their carers cope with the rigours of chronic illness and life on a transplant waiting list. Eight patients with CF, four awaiting transplant and four who had been transplanted within the previous 3 years, along with five of their carers, were asked to recount their experiences using a semi-structured interview technique. Four themes emerged from the interview data; displacement, disorder, life in limbo and readjustment to wellness. Support appears to be particularly important to patients and families after false alarms occur, and upon return home after transplant. The small sample size precludes generalization of the results to all patients with CF but gives an in-depth insight into the lived experience of waiting for transplant.
在英国，为终末期囊性纤维化（CF）患者进行肺移植被认为是患有晚期肺部疾病的CF患者唯一成功的治疗方法。本研究采用探索性方法，考察CF患者及其护理人员如何应对慢性病的严峻考验以及在移植等候名单上的生活。八名CF患者，四名等待移植，四名在过去三年内已接受移植，连同他们的五名护理人员，被要求使用半结构化访谈技术讲述他们的经历。访谈数据出现了四个主题：替代、紊乱、生活停滞和恢复健康。在出现误报后以及移植后回家时，支持对患者和家庭似乎尤为重要。样本量小使得无法将结果推广到所有CF患者，但能深入洞察等待移植的实际经历。
