Choyce Jocelyn, Hewison Alistair, Swift Amelia, Whitehouse Joanna L
West Midlands Adult Cystic Fibrosis Centre, Birmingham Heartlands Hospital, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK.
Institute of Clinical Sciences, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK.
Chron Respir Dis. 2025 Jan-Dec;22:14799731241249476. doi: 10.1177/14799731241249476.
The use of non-invasive ventilation (NIV) in patients with advanced cystic fibrosis (CF) has increased in recent years. Research evidence supports its clinical benefits, but less is known about the patients' experience of its long-term use in a domiciliary setting. To investigate patients' lived experience of using long-term domiciliary NIV. Semi-structured, qualitative interviews were conducted with adults with CF using long-term domiciliary NIV for respiratory failure. The data collected were subject to thematic analysis. Nine adults (6 female), 5 of whom were awaiting lung transplantation, with a mean age of 39 years and mean FEV per cent predicted of 28%, were recruited. Data analysis revealed 2 themes: gratitude, and determination despite challenges. Patients identified some troubling side effects from NIV but were grateful for its symptomatic relief and were determined to continue using it to improve their quality of life. Participants reported experiences of NIV to be generally positive in terms of symptom relief and quality of life. These findings provide an initial insight into patients' experience of NIV and have the potential to help guide and improve care.
近年来，无创通气（NIV）在晚期囊性纤维化（CF）患者中的应用有所增加。研究证据支持其临床益处，但对于患者在家庭环境中长期使用无创通气的体验了解较少。为了调查患者长期在家使用无创通气的实际体验。对因呼吸衰竭长期在家使用无创通气的成年CF患者进行了半结构化的定性访谈。对收集到的数据进行了主题分析。招募了9名成年人（6名女性），其中5人正在等待肺移植，平均年龄为39岁，预计平均第一秒用力呼气容积（FEV）为28%。数据分析揭示了两个主题：感恩和尽管面临挑战仍坚定决心。患者发现无创通气有一些令人困扰的副作用，但对其症状缓解心怀感激，并决心继续使用以提高生活质量。参与者报告称，无创通气在缓解症状和提高生活质量方面的体验总体上是积极的。这些发现初步洞察了患者使用无创通气的体验，并有可能帮助指导和改善护理。
