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开发并早期实施一种便于获取、注重关系、具包容性和能付诸行动的遗传咨询方法:ARIA 模型。

Development and early implementation of an Accessible, Relational, Inclusive and Actionable approach to genetic counseling: The ARIA model.

机构信息

Department of Humanities and Social Sciences, University of California, San Francisco, 1450 3rd St., San Francisco, CA 94158, USA.

Division of Medical Genetics, Department of Medicine, University of Washington Medical Center, 1705 NE Pacific St. Box 357720, Seattle, WA 98195, USA.

出版信息

Patient Educ Couns. 2021 May;104(5):969-978. doi: 10.1016/j.pec.2020.12.017. Epub 2020 Dec 23.

DOI:10.1016/j.pec.2020.12.017
PMID:33549385
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8881934/
Abstract

OBJECTIVE

To describe the training and early implementation of the ARIA model of genetic counseling (Accessible, Relational, Inclusive, Actionable).

METHODS

As part of the Cancer Health Assessments Reaching Many (CHARM) study, an interdisciplinary workgroup developed the ARIA curriculum and trained genetic counselors to return exome sequencing results using the ARIA model.

CURRICULUM

The ARIA curriculum includes didactic elements, discussion, readings, role plays, and observations of usual care genetic counseling sessions. The ARIA model provides the skills and strategies needed for genetic counseling to be accessible to all patients, regardless of prior knowledge or literacy level; involves appropriate psychological and social counseling without overwhelming the patient with information; and leaves the patient with clear and actionable next steps.

CONCLUSION

With sufficient training and practice, the ARIA model appears to be feasible, with promise for ensuring that genetic counselors' communication is accessible, relational, inclusive and actionable for the diverse patients participating in genomic medicine.

PRACTICE IMPLICATIONS

ARIA offers a coherent set of principles and strategies for effective communication with patients of all literacy levels and outlines specific techniques to practice and incorporate these skills into routine practice. The ARIA model could be integrated into genetic counseling training programs and practice, making genetic counseling more accessible and meaningful for all patients.

摘要

目的

描述 ARIA 遗传咨询模型(可及性、关系性、包容性、可操作性)的培训和早期实施情况。

方法

作为癌症健康评估惠及多人(CHARM)研究的一部分,一个跨学科工作组开发了 ARIA 课程,并培训遗传咨询师使用 ARIA 模型来解读外显子组测序结果。

课程

ARIA 课程包括理论元素、讨论、阅读材料、角色扮演和观察常规遗传咨询会话。ARIA 模型提供了遗传咨询所需的技能和策略,无论患者的先前知识或读写水平如何,都能使遗传咨询具有可及性;涉及适当的心理和社会咨询,不会使患者因信息过多而不知所措;并为患者提供明确且可操作的下一步措施。

结论

经过充分的培训和实践,ARIA 模型似乎是可行的,有望确保遗传咨询师的沟通对参与基因组医学的不同患者具有可及性、关系性、包容性和可操作性。

实践意义

ARIA 为具有不同读写水平的患者提供了一套连贯的有效沟通原则和策略,并概述了具体的技术,以练习和将这些技能纳入常规实践。ARIA 模型可以整合到遗传咨询培训计划和实践中,使遗传咨询对所有患者更具可及性和意义。

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