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理解早发性家族性阿尔茨海默病的综合方法:一项原住民研究。

Converging approaches to understanding early onset familial Alzheimer disease: A First Nation study.

作者信息

Cabrera Laura Y, Beattie B Lynn, Dwosh Emily, Illes Judy

机构信息

National Core for Neuroethics, Department of Medicine, University of British Columbia, Vancouver, BC, Canada; Center for Ethics and Humanities in the Life Sciences, College of Human Medicine, Michigan State University, East Lansing, MI, USA.

Division of Geriatric Medicine, Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada; Clinic for Alzheimer Disease and Related Disorders, University of British Columbia, Vancouver, BC, Canada.

出版信息

SAGE Open Med. 2015 Dec 15;3:2050312115621766. doi: 10.1177/2050312115621766. eCollection 2015.

Abstract

OBJECTIVES

In 2007, a novel pathogenic genetic mutation associated with early onset familial Alzheimer disease was identified in a large First Nation family living in communities across British Columbia, Canada. Building on a community-based participatory study with members of the Nation, we sought to explore the impact and interplay of medicalization with the Nation's knowledge and approaches to wellness in relation to early onset familial Alzheimer disease.

METHODS

We performed a secondary content analysis of focus group discussions and interviews with 48 members of the Nation between 2012 and 2013. The analysis focused specifically on geneticization, medicalization, and traditional knowledge of early onset familial Alzheimer disease, as these themes were prominent in the primary analysis.

RESULTS

We found that while biomedical explanations of disease permeate the knowledge and understanding of early onset familial Alzheimer disease, traditional concepts about wellness are upheld simultaneously.

CONCLUSION

The analysis brings the theoretical framework of "two-eyed seeing" to the case of early onset familial Alzheimer disease for which the contributions of different ways of knowing are embraced, and in which traditional and western ways complement each other on the path of maintaining wellness in the face of progressive neurologic disease.

摘要

目标

2007年,在加拿大不列颠哥伦比亚省各地社区生活的一个大型原住民家庭中,发现了一种与早发性家族性阿尔茨海默病相关的新型致病基因突变。基于与该原住民群体成员开展的一项社区参与式研究,我们试图探讨医学化与该群体关于早发性家族性阿尔茨海默病的健康知识及方法之间的影响和相互作用。

方法

2012年至2013年期间,我们对48名该原住民群体成员的焦点小组讨论和访谈进行了二次内容分析。分析特别关注早发性家族性阿尔茨海默病的基因化、医学化和传统知识,因为这些主题在初步分析中很突出。

结果

我们发现,虽然疾病的生物医学解释渗透在对早发性家族性阿尔茨海默病的认识和理解中,但同时传统的健康观念也得以维持。

结论

该分析将“双眼看”的理论框架应用于早发性家族性阿尔茨海默病案例,其中不同认知方式的贡献都得到认可,并且在面对进行性神经疾病时,传统方式和西方方式在维持健康的道路上相互补充。

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