College of Nursing, Graduate Nursing, South Dakota State University, Sioux Falls, SD, USA.
College of Nursing, Graduate Nursing, South Dakota State University, Rapid City, SD, USA.
J Clin Nurs. 2020 Sep;29(17-18):3553-3564. doi: 10.1111/jocn.15397. Epub 2020 Jul 20.
This study sought to understand the experience of living with cystic fibrosis (CF) as an adult.
Cystic fibrosis is one of the most difficult chronic diseases to manage long term because of numerous challenges faced on a day-to-day basis. The majority of studies focus on improving symptom response to new treatment regimens with the hope of prolonging life. Yet few qualitative studies explore the experience of adults with CF. What is missing from the current literature are the voices of people living with CF, especially as they age.
This study follows a hermeneutic phenomenology design guided by Martin Heidegger's philosophy.
Semi-structured interviews were conducted with nine adults living with CF. Hermeneutic phenomenology guided the data interpretation. This manuscript follows COREQ reporting guidelines.
Hermeneutic analysis revealed the overarching theme The Dance of Cystic Fibrosis which is supported by five themes: (a) the paradox of control, (b) living deaths, (c) dancing with death, (d) relearning to dance, and (e) role of the dance partner.
The experience of living with CF as an adult is multidimensional and unique to each person. Despite the uniqueness, there is a shared experience that manifested as The Dance of Cystic Fibrosis. As life expectancy continues to increase for persons with CF, it is essential that researchers and healthcare professionals intentionally consider the life-prolonging effects of the treatment regimen alongside the persons' experience with those effects.
Nurses at all levels of practice should be prepared to address the multifaceted experience of living with CF through thoughtful incorporation of open-ended questions. This allows patients to share their experience with nurses, augmenting their practice of delivering holistic care.
本研究旨在了解成年人患囊性纤维化（CF）的生活体验。
由于每天都面临许多挑战，囊性纤维化是最难长期管理的慢性疾病之一。大多数研究都集中在改善对新治疗方案的症状反应上，以期延长生命。然而，很少有定性研究探讨成年 CF 患者的体验。目前文献中缺少 CF 患者的声音，尤其是随着年龄的增长。
本研究遵循解释学现象学设计，以马丁·海德格尔的哲学为指导。
对 9 名成年 CF 患者进行了半结构化访谈。解释学现象学指导了数据解释。本手稿遵循 COREQ 报告指南。
解释学分析揭示了主导主题“囊性纤维化之舞”，由五个主题支持：（a）控制的悖论，（b）生活中的死亡，（c）与死亡共舞，（d）重新学习舞蹈，以及（e）舞蹈伙伴的角色。
作为成年人，患有 CF 的生活体验是多维度的，且因人而异。尽管存在独特性，但仍有一种共同的体验，表现为“囊性纤维化之舞”。随着 CF 患者的预期寿命继续延长，研究人员和医疗保健专业人员必须认真考虑治疗方案的延长生命效应以及患者对这些效应的体验。
各级实践的护士都应该准备好通过深思熟虑地提出开放式问题来解决 CF 患者的多方面生活体验。这使患者能够与护士分享他们的体验，增强他们提供整体护理的实践能力。
