Byrne-Davis L M T, Bennett P D, Wilcock G K
Department of Care of the Elderly, Department of Clinical Science at North Bristol, University of Bristol, UK.
Qual Life Res. 2006 Jun;15(5):855-65. doi: 10.1007/s11136-005-5416-9.
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 continuingto 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.
生活质量（QOL）已成为痴呆症研究的一个焦点。在衡量生活质量时，痴呆症患者的观点往往未被考虑，因为研究人员认为他们可能无法阐明自己的意见。本文反驳了这一观点，介绍了一项采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重要的问题。此外，我们提出了一个生活质量模型，包括重要问题（包括家庭和健康）、生活质量与其他变量之间的假设联系。25名参与者参加了九个焦点小组中的一个。这些小组包括年龄在49岁至93岁之间、患有轻度至重度痴呆症的参与者。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，只有两人表示他们的认知问题影响了他们的生活质量。通过分析发现有22个问题对生活质量有影响，包括继续住在自己家里独立、配偶和其他家庭成员、感到幸福和感到有用。痴呆症患者在谈论他们的生活质量时会进行社会比较，也会直接评估自己的幸福感。提出了一个基于应对和反应转移理论的生活质量模型。如此少的参与者谈论以疾病为导向的问题这一事实，对许多用于痴呆症患者的生活质量测量中包含的大量认知成分提出了挑战。
