Grande G E, Todd C J, Barclay S I
Health Services Research Group, University of Cambridge, UK.
Palliat Med. 1997 May;11(3):202-8. doi: 10.1177/026921639701100304.
The aim of this study was to identify needs for support and problems in the introduction of support to terminally ill patients and their carers. The design involved semistructured interviews with patients and carers as well as a survey of general practitioners' (GPs) views, and took place in GP practices and homes of patients in Cambridgeshire. The subjects comprised 43 terminally ill patients, 30 carers, 80 GPs and 13 of their GP partners. The main outcome measures were quantitative data about additional help required and qualitative data on reasons for reluctance to seek help. Needs for help with transport, personal care and housework were identified. Carers may also need reassurance from health professionals. The need for outside help may at times conflict with the need to preserve independence, dignity and familiar aspects of life. Sometimes carers may feel that there is need for more help, but that this conflicts with patients' wishes. There may also be reluctance to seek help because of a perceived lack of resources and professionals time. In conclusion, an increase in services is necessary but not sufficient to meet patients' needs fully. Services should be introduced in ways that help patients to preserve independence, dignity and familiar aspects of life. The perception of accessibility to health professionals may need to be improved. Carers' needs should be assessed separately from patients' needs.
本研究的目的是确定临终患者及其护理人员在引入支持方面的支持需求和问题。该设计包括对患者和护理人员进行半结构化访谈以及对全科医生（GP）的观点进行调查，并在剑桥郡的全科医生诊所和患者家中进行。研究对象包括43名临终患者、30名护理人员、80名全科医生及其13名全科医生合作伙伴。主要结局指标是关于所需额外帮助的定量数据以及不愿寻求帮助原因的定性数据。确定了在交通、个人护理和家务方面的帮助需求。护理人员可能还需要卫生专业人员的安慰。外部帮助的需求有时可能与保持独立、尊严和生活中熟悉方面的需求相冲突。有时护理人员可能觉得需要更多帮助，但这与患者的意愿相冲突。由于感觉缺乏资源和专业人员的时间，也可能不愿寻求帮助。总之，增加服务是必要的，但不足以充分满足患者的需求。应以帮助患者保持独立、尊严和生活中熟悉方面的方式引入服务。可能需要改善对卫生专业人员可及性的认知。护理人员的需求应与患者的需求分开评估。
