Division of Psychiatry, University College London, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK.
Psychol Med. 2020 Jan;50(1):86-95. doi: 10.1017/S0033291718003987. Epub 2019 Jan 29.
Improving quality of life (QOL) for people with dementia is a priority. In care homes, we often rely on proxy ratings from staff and family but we do not know if, or how, they differ in care homes.
We compared 1056 pairs of staff and family DEMQOL-Proxy ratings from 86 care homes across England. We explored factors associated with ratings quantitatively using multilevel modelling and, qualitatively, through thematic analysis of 12 staff and 12 relative interviews.
Staff and family ratings were weakly correlated (ρs = 0.35). Median staff scores were higher than family's (104 v. 101; p < 0.001). Family were more likely than staff to rate resident QOL as 'Poor' (χ2 = 55.91, p < 0.001). Staff and family rated QOL higher when residents had fewer neuropsychiatric symptoms and severe dementia. Staff rated QOL higher in homes with lower staff:resident ratios and when staff were native English speakers. Family rated QOL higher when the resident had spent longer living in the care home and was a native English. Spouses rated residents' QOL higher than other relatives. Qualitative results suggest differences arise because staff felt good care provided high QOL but families compared the present to the past. Family judgements centre on loss and are complicated by decisions about care home placement and their understandings of dementia.
Proxy reports differ systematically between staff and family. Reports are influenced by the rater:staff and family may conceptualise QOL differently.
提高痴呆症患者的生活质量（QOL）是当务之急。在养老院中，我们通常依赖工作人员和家属的代理评分，但我们不知道这些评分在养老院之间是否存在差异，以及差异的程度如何。
我们比较了来自英格兰 86 家养老院的 1056 对工作人员和家属的 DEMQOL-Proxy 评分。我们使用多层次模型对与评分相关的因素进行了定量研究，并通过对 12 名工作人员和 12 名家属的访谈进行主题分析进行了定性研究。
工作人员和家属的评分相关性较弱（ρs = 0.35）。工作人员的评分中位数高于家属（104 比 101；p < 0.001）。家属比工作人员更有可能将居民的 QOL 评为“差”（χ2 = 55.91，p < 0.001）。当居民的神经精神症状和痴呆症严重程度较轻时，工作人员和家属对 QOL 的评分较高。当工作人员与居民的比例较低且工作人员为英语母语者时，工作人员对 QOL 的评分较高。当居民在养老院居住的时间较长且为英语母语者时，家属对 QOL 的评分较高。配偶对居民的 QOL 评分高于其他亲属。定性结果表明，差异的产生是因为工作人员认为良好的护理提供了较高的 QOL，而家属则将现状与过去进行了比较。家属的判断主要集中在损失上，并且受到关于养老院安置的决策和他们对痴呆症的理解的影响。
工作人员和家属之间的代理报告存在系统差异。报告受到评分者的影响：工作人员和家属可能对 QOL 有不同的概念化。
