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对具有乳腺癌高遗传风险的女性进行彩色生态遗传关系图(CEGRM)可行性和实用性的探索性研究。

Exploratory study of the feasibility and utility of the colored eco-genetic relationship map (CEGRM) in women at high genetic risk of developing breast cancer.

作者信息

Peters June A, Kenen Regina, Giusti Ruthann, Loud Jennifer, Weissman Nancy, Greene Mark H

机构信息

Clinical Genetics Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, National Institutes of Health, Department of Health and Human Services, Rockville, Maryland 20852, USA.

出版信息

Am J Med Genet A. 2004 Oct 15;130A(3):258-64. doi: 10.1002/ajmg.a.30271.

Abstract

We report here the results of an exploratory feasibility study of the colored eco-genetic relationship map (CEGRM), a novel, recently-developed psychosocial assessment tool, which incorporates features of the genetic pedigree, family systems genogram, and ecomap. The CEGRM presents a simple, concise, visual representation of the social interaction domains of information, services, and emotional support through the application of color-coded symbols to the genetic pedigree. The interactive process of completing the CEGRM was designed to facilitate contemporary genetic counseling goals of: (a) understanding the client in the context of her/his social milieu; (b) bolstering client self-awareness and insight; (c) fostering active client participation and mutuality in the counseling interaction; (d) eliciting illuminating social narratives; and (e) addressing outstanding emotional issues. Twenty women participating in a breast imaging study of women from families with BRCA1/2 mutations completed and evaluated various aspects of the CEGRM. We found that efficient construction of the CEGRM was feasible, and that compliance was excellent. Participants developed insights into their social milieu through observing the visual pattern of relationships illustrated by the CEGRM. The process of co-constructing the CEGRM fostered the participant's active involvement in the session, marked by mutuality and increased empathy. In this clinical research context, the participants felt free to share poignant stories about their friends and families. Further studies are planned to refine the CEGRM and to examine its utility in cancer genetics research.

摘要

我们在此报告一项关于彩色生态遗传关系图(CEGRM)的探索性可行性研究结果。CEGRM是一种新颖的、最近开发的心理社会评估工具,它融合了遗传谱系、家庭系统图谱和生态地图的特征。通过将颜色编码符号应用于遗传谱系,CEGRM以简单、简洁的视觉方式呈现了信息、服务和情感支持等社会互动领域。完成CEGRM的互动过程旨在促进当代遗传咨询的目标:(a)在其社会环境背景下了解客户;(b)增强客户的自我意识和洞察力;(c)促进客户在咨询互动中的积极参与和相互性;(d)引出有启发性的社会叙事;以及(e)解决突出的情感问题。20名参与BRCA1/2基因突变家族女性乳腺成像研究的女性完成并评估了CEGRM的各个方面。我们发现高效构建CEGRM是可行的,并且依从性极佳。参与者通过观察CEGRM所展示的关系视觉模式,对其社会环境有了深入了解。共同构建CEGRM的过程促进了参与者在咨询过程中的积极参与,其特点是相互性和同理心的增强。在这个临床研究背景下,参与者能够自由分享关于其朋友和家人的辛酸故事。计划进一步开展研究以完善CEGRM,并检验其在癌症遗传学研究中的效用。

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