O'Rourke Hannah M, Fraser Kimberly D, Duggleby Wendy
Daphne Cockwell School of Nursing, Ryerson University, Toronto, Ontario, Canada.
Faculty of Nursing Level 3, Edmonton Clinic Health Academy, University of Alberta, Edmonton, Alberta, Canada.
J Adv Nurs. 2015 Aug;71(8):1812-24. doi: 10.1111/jan.12667. Epub 2015 Apr 20.
A discussion of the extent to which people with dementia's perspectives on quality of life have been included in quantitative research.
Capturing the perspective of people with dementia may improve understanding of their quality of life. Quantitative tools to assess quality of life exist, but the extent to which these reflect the perspective of people with dementia has not been evaluated.
A discussion paper.
Ten tools (designed between 1992-2012) to measure quality of life from the perspective of people with dementia were located from existing reviews.
Each tool was rated according to the extent to which the developers included the perspectives of people with dementia at three different points of quality of life conceptualization: during quality of life assessment, to identify quality of life domains and to define an overall conceptual framework. This analysis demonstrates that tool developers were inconsistent in their approach to including the perspectives of people with dementia to understand quality of life. The perspective of people with dementia was included primarily to assess, but not to select domains or define overall quality of life.
Nurses should consider not only who assesses quality of life, but also whose understanding of quality of life is being assessed.
It is unclear whether the quantitative quality of life literature reflects the perspective of people with dementia. Debate is needed regarding the impact of this issue on the lives of people with dementia.
探讨痴呆症患者对生活质量的看法在定量研究中的纳入程度。
了解痴呆症患者的看法可能有助于增进对其生活质量的理解。虽然存在评估生活质量的定量工具，但这些工具在多大程度上反映痴呆症患者的看法尚未得到评估。
一篇讨论论文。
从现有综述中找到了10种（1992年至2012年间设计）从痴呆症患者角度衡量生活质量的工具。
根据开发者在生活质量概念化的三个不同阶段纳入痴呆症患者看法的程度，对每种工具进行评分：在生活质量评估期间、确定生活质量领域时以及定义总体概念框架时。分析表明，工具开发者在纳入痴呆症患者看法以理解生活质量的方法上并不一致。痴呆症患者的看法主要用于评估，而非选择领域或定义总体生活质量。
护士不仅应考虑谁来评估生活质量，还应考虑评估的是对生活质量的哪种理解。
尚不清楚生活质量定量研究文献是否反映了痴呆症患者的看法。需要就这一问题对痴呆症患者生活的影响展开辩论。
