Hudson Peter L, Toye Christine, Kristjanson Linda J
Centre for Palliative Care, St. Vincent's Health, Australia.
Palliat Med. 2006 Mar;20(2):87-94. doi: 10.1191/0269216306pm1108oa.
Parkinson's disease (PD) is a chronic, progressive, degenerative disorder of the nervous system, causing substantial morbidity and has the capacity to shorten life. People with PD and their families can find the disease devastating. Nevertheless, this population of patients is not usually considered a group to be supported by palliative care specialists. But the nature of the illness and the challenges of managing its many physical and psychological effects raises questions about the potential benefits of a palliative care approach. The purpose of this project was to describe the experience of PD and consider the relevance of palliative care for this population. Semi-structured interviews were conducted with eight people with PD, 21 family caregivers and six health professionals. Five themes were developed from the data analysis: (1) emotional impact of diagnosis; (2) staying connected; (3) enduring financial hardship; (4) managing physical challenges; and (5) finding help for advanced stages. These data revealed that people with PD and family caregivers are confronted with similar issues to people with typical palliative care diagnoses, such as advanced cancer, and that a palliative approach may be helpful in the care of people with PD and their families.
帕金森病(PD)是一种慢性、进行性的神经系统退行性疾病,会导致严重的发病率,并有可能缩短寿命。帕金森病患者及其家人会发现这种疾病极具破坏性。然而,这一患者群体通常不被认为是需要姑息治疗专家提供支持的群体。但是,该疾病的性质以及应对其诸多生理和心理影响所面临的挑战,引发了对于姑息治疗方法潜在益处的质疑。本项目的目的是描述帕金森病患者的经历,并思考姑息治疗对这一群体的相关性。我们对8名帕金森病患者、21名家庭护理人员和6名医疗专业人员进行了半结构化访谈。通过数据分析得出了五个主题:(1)诊断的情感影响;(2)保持联系;(3)忍受经济困难;(4)应对身体挑战;(5)为晚期寻求帮助。这些数据表明,帕金森病患者及其家庭护理人员面临着与晚期癌症等典型姑息治疗诊断患者类似的问题,并且姑息治疗方法可能有助于照顾帕金森病患者及其家人。