Addington-Hall Julia, Lay Margaret, Altmann Dan, McCarthy Mark
Department of Palliative Care and Policy, Kings College School of Medicine and Dentistry, London UK; Department of Epidemiology and Public Health, University College London, UK.
Health Soc Care Community. 1998 Mar;6(2):112-119. doi: 10.1046/j.1365-2524.1998.00088.x.
The quality of community care received in the last year of life by stroke patients and their informal carers is described. This is secondary analysis of data from the Regional Study of Care for the Dying, in which information was collected on a randomly selected sample of people who died in 1990, in 20 self-selected English health districts that were nationally representative in terms of socio-demographic characteristics and health care provision. The respondents comprised 20 spouses, 48 relatives, three friends or neighbours and 40 officials who had known about the last year of life of 111 people who died of stroke, and had spent some time at home (or in a residential or nursing home) in the last year of life. Two-fifths of those who died were reported to have needed more help with personal care (43%), a quarter to have needed more help with domestic chores (27%), and a third to have needed more financial help (31%). Three-fifths had spent some of their last year in a nursing or residential home (63%). Three quarters of respondents who had borne the brunt of caring reported that caring had restricted their own activities to a fair or severe extent (76%); only a third had found it a rewarding experience (32%). Spouses, and those caring for depressed or anxious stroke patients found caring particularly stressful. Stroke patients living in the community need more help with domestic chores and, in particular, with personal care. Informal carers require better support, especially spouses and for those caring for depressed or anxious stroke patients. Further research is required to identify and evaluate the most effective ways of meeting the needs of these patients and their families, and to explore the effects on their care of the Community Care legislation.
描述了中风患者及其非正式护理人员在生命最后一年所接受的社区护理质量。这是对“临终关怀区域研究”数据的二次分析，该研究收集了1990年去世的随机抽样人群的信息，这些人群来自20个自行选择的英国卫生区，这些卫生区在社会人口特征和医疗保健提供方面具有全国代表性。受访者包括20名配偶、48名亲属、3名朋友或邻居以及40名了解111名死于中风者生命最后一年情况且在其生命最后一年曾在家中（或养老院或疗养院）陪伴过一段时间的工作人员。据报告，五分之二的死者在个人护理方面需要更多帮助（43%），四分之一的死者在家务方面需要更多帮助（27%），三分之一的死者需要更多经济帮助（31%）。五分之三的死者在生命的最后一年在疗养院或养老院度过（63%）。四分之三承担主要护理责任的受访者表示，护理在相当程度或严重程度上限制了他们自己的活动（76%）；只有三分之一的人认为这是一次有益的经历（32%）。配偶以及照顾抑郁或焦虑中风患者的人发现护理压力特别大。居住在社区的中风患者在家务方面，尤其是个人护理方面需要更多帮助。非正式护理人员需要更好的支持，尤其是配偶以及照顾抑郁或焦虑中风患者的人。需要进一步研究以确定和评估满足这些患者及其家庭需求的最有效方法，并探讨《社区护理法》对其护理的影响。
