Badlan Kathryn
Faculty of Health and Social Care, University of the West of England, Glenside Campus, Stapleton, Bristol BS16 1 DD, UK.
Health Soc Care Community. 2006 May;14(3):264-70. doi: 10.1111/j.1365-2524.2006.00619.x.
The aim of this article is to explore the experiences of young people living with cystic fibrosis and the impact of these experiences on their compliance to treatment regimen. Thirty-one young adults participated in semi-structured interviews which were transcribed and the data collected analysed using interpretative phenomenology. Emerging themes underlined just how complex it is to manage life with a chronic illness as demanding as cystic fibrosis. A strong emphasis emerged from the participants about their desire to integrate into society and to be seen to be normal and this was seen as in conflict with some aspects of their recommended ongoing treatment. The findings suggested that complete compliance is rare and is affected by a multitude of factors, set within the context of each individual's unique life experience. Healthcare professionals need to understand, not just the objective medical condition in delivering care, but they also need to develop an insight into the subjective experience of living with illnesses such as cystic fibrosis. Their central concern should not be to maximise compliance but rather to support the making of informed decisions about broader lifestyles and health behaviours.
本文旨在探讨患有囊性纤维化的年轻人的经历，以及这些经历对他们遵守治疗方案的影响。31名年轻人参与了半结构化访谈，访谈内容被转录，收集到的数据采用解释现象学进行分析。新出现的主题凸显了与像囊性纤维化这样要求苛刻的慢性病一起生活有多复杂。参与者强烈强调他们渴望融入社会并被视为正常人，而这被认为与他们推荐的持续治疗的某些方面存在冲突。研究结果表明，完全遵守治疗方案的情况很少见，并且受到多种因素的影响，这些因素存在于每个人独特的生活经历背景中。医疗保健专业人员不仅需要在提供护理时了解客观的医疗状况，还需要深入了解患有囊性纤维化等疾病的主观体验。他们的核心关注点不应是最大限度地提高依从性，而应是支持就更广泛的生活方式和健康行为做出明智的决定。
