Robinson Terry
Harrogate District hospital, Harrogate Health Care NHS Trust.
Nurs Times. 2005;101(7):38-42.
To describe the experience of living with severe oxygen-dependent chronic obstructive pulmonary disease (COPD).
Unstructured, tape-recorded interviews were used to collect data from 10 patients with COPD. The interviews were undertaken in the patients' own homes.
Recurrent themes emerged from the data. All participants reported physical and emotional problems, mainly caused by breathlessness. Half of the sample discussed feeling depressed and 80 per cent discussed how COPD had affected their family life. Participants discussed how difficult it was to stop smoking, and the guilt they felt when they realised their smoking had caused their disease. Half of the sample discussed needs, such as better communication between health professionals and patients about the diagnosis and prognosis. Long-term oxygen therapy was described in negative terms by 10 per cent of the sample.
Severe COPD has an impact on all aspects of a patient's quality of life. A palliative, interdisciplinary approach from primary and secondary care, social services and the voluntary agencies needs to be adopted at an earlier stage of the disease. Patients should be encouraged to participate in the planning and management of their treatment to improve their experience of the disease in the future.
描述重度氧依赖型慢性阻塞性肺疾病(COPD)患者的生活体验。
采用非结构化、录音访谈的方式,从10例COPD患者中收集数据。访谈在患者家中进行。
数据中出现了反复出现的主题。所有参与者均报告了身体和情绪问题,主要由呼吸困难引起。一半的样本讨论了感到沮丧的情况,80%的样本讨论了COPD如何影响他们的家庭生活。参与者讨论了戒烟的困难程度,以及当他们意识到吸烟导致了自己的疾病时所感到的内疚。一半的样本讨论了一些需求,比如医护人员与患者之间在诊断和预后方面需要更好的沟通。10%的样本对长期氧疗持负面评价。
重度COPD对患者生活质量的各个方面都有影响。在疾病的早期阶段,需要采取由初级和二级医疗保健、社会服务机构及志愿机构组成的姑息性跨学科方法。应鼓励患者参与其治疗的规划和管理,以改善他们未来对疾病的体验。