How are quality of life ratings made? Toward a model of quality of life in people with dementia
How are quality of life ratings made? Toward a model of quality of life in people with dementia
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DOI：
10.1007/s11136-005-5416-9
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发表时间：
2006-06-01
影响因子：
3.5
通讯作者：
Wilcock, GK
中科院分区：
文献类型：
--
作者：
Byrne-Davis, LMT;Bennett, PD;Wilcock, GK
生活质量（QOL）已成为痴呆症研究的热点。在测量生活质量时，痴呆症患者的观点往往没有被考虑，因为研究人员认为他们可能无法表达自己的观点。本文反驳了这一观点，提出了一项使用扎根理论方法的研究，以探讨痴呆症患者认为对其生活质量很重要的问题。此外，我们提出了一个模型的生活质量，包括假设的重要问题（包括家庭和健康），生活质量和其他变量之间的联系。25名与会者参加了9个重点小组之一。这些小组包括轻度至重度痴呆症的参与者，年龄从49岁到93岁不等。结果表明，大多数参与者愿意并能够谈论他们的生活质量。在25名参与者中，只有两人说他们的认知问题影响了他们的生活质量。通过分析发现了22个有助于生活质量的问题，包括继续住在自己的家里，独立，配偶和其他家庭，感觉快乐和感觉有用。痴呆症患者在谈论他们的生活质量时使用社会比较，以及直接评估他们自己的幸福感。提出了一个基于应对和反应转移理论的生活质量模型。事实上，很少有参与者谈论以疾病为导向的问题，这对许多用于痴呆症患者的QOL测量中包含的大量认知成分提出了挑战。
Quality of life (QOL) has become a focus of research in dementia. In measuring QOL, the views of people with dementia often have not been considered as researchers have proposed that they may not be able to articulate their opinions. This paper counters this belief, presenting a study using a grounded theory methodology to explore the issues that people with dementia felt were important for their QOL. Further, we propose a model of QOL including hypothesised links between important issues (including family and health), QOL and other variables. Twenty-five participants took part in one of nine focus groups. The groups included participants with mild to severe dementia with ages ranging from 49 to 93 years. Results indicate that most of the participants were willing and able to talk about their QOL. Of the 25 participants, only two said that their cognitive problems affected their QOL. Twenty-two issues were discovered through analysis to contribute to QOL, including continuing to live in your own home, independence, spouse and other family, feeling happy and feeling useful. People with dementia used social comparisons in talking about their QOL, as well as direct evaluation of their own happiness. A model of QOL based on theories of coping and response shift is suggested. The fact that so few of the participants talked about disease-orientated issues challenges the large cognitive components included in many QOL measures for use with people with dementia.