5 research outputs found

    Learning to breathe with Tai Chi online - qualitative data from a randomized controlled feasibility study of patients with cystic fibrosis

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    Introduction Tai Chi (TC), a gentle exercise, incorporates meditative movement and respiratory control. The high risk of cross infection for people with cystic fibrosis (CF) requires close management in healthcare settings, limiting group activities such as TC. A mixed-methods randomized controlled feasibility study compared teaching TC over the internet with in-person, face to face TC tuition provided to CF patients. This article explores qualitative data from patients and TC instructors on their attitudes, acceptability and engagement with the two modes of TC delivery. Methods Qualitative data from CF patients (>6 years) were collected using Skype interviews/focus groups and written feedback. TC instructors provided weekly written feedback, and took part in interviews/ focus groups at the end of the study. Patient and instructor interviews explored their experiences and engagement with TC online delivery and ability to practice. Results Irrespective of the type of TC delivery, all CF participants interviewed (n = 28) practiced between lessons and most wanted to continue TC. Teenagers were more likely to miss TC appointments. Internet delivery was well received by both patients and TC instructors. Two patients reported difficulties with screen size/camera and one with internet connectivity. Conclusion Both face-to-face and internet delivery of TC lessons were equally well received and perceived as beneficial. In the current COVID-19 pandemic, CF patients self-isolating could find this intervention provides important support, therefore the programme was made available on YouTube in April 2020 and linked to the websites of the CF charities funding the research

    Report of the European Respiratory Society/European Cystic Fibrosis Society task force on the care of adults with cystic fibrosis

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    The improved survival in people with cystic fibrosis has led to an increasing number of patients reaching adulthood. This trend is likely to be maintained over the next decades, suggesting a need to increase the number of centres with expertise in the management of adult patients with cystic fibrosis. These centres should be capable of delivering multidisciplinary care addressing the complexity of the disease, in addition to addressing the psychological burden on patients and their families. Further issues that require attention are organ transplantation and end of life management.Lung disease in adults with cystic fibrosis drives most of the clinical care requirements, and major life-threatening complications, such as respiratory infection, respiratory failure, pneumothorax and haemoptysis, and the management of lung transplantation require expertise from trained respiratory physicians. The taskforce therefore strongly reccommends that medical leadership in multidisciplinary adult teams should be attributed to a respiratory physician adequately trained in cystic fibrosis management.The task force suggests the implementation of a core curriculum for trainees in adult respiratory medicine and the selection and accreditation of training centres that deliver postgraduate training to the standards of the HERMES programme
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