Genetic Counseling Processes and Analogue Client Outcome

描述(由申请人提供)：遗传咨询提供了新的检测技术和个人参与知情决策过程的能力之间的转换联系。这些信息的密集和抽象性质，再加上它所暗示的对不确定性和疾病脆弱性的高度焦虑，可能会让咨询客户在认知和情感上都不堪重负。过去20年的结果研究发现，相当大一部分信息被误解或回忆不起来；事实上，一些研究人员警告称，遗传咨询经历可能是一种重要的心理应激源，增加而不是减少疾病焦虑。尽管咨询过程对患者的结果起着至关重要的作用，但很少有结果研究涉及到构成咨询过程交流的互动语言和情感过程。此外，少数民族和低文化人口在遗传咨询服务使用者中的比例很低，对如何最好地为这些人口提供服务知之甚少。 目前的提案是一项分两个阶段的研究，旨在解决这些关键问题。在第一阶段，将从全国遗传咨询学会(NSGC)的会议上或通过地区中心招募200名遗传顾问，在采访训练有素的模拟客户时进行录像，这些客户寻求与a)针对高龄产妇和囊性纤维化阳性家族史的产前测试咨询，或b)BRCA1和BRCA2基因突变的敏感性测试。非裔美国人或高加索女性的模拟客户将在面试中单独使用，或在会议期间由男性模拟器陪同充当客户的配偶。研究的第二阶段从种族、地理和受教育程度不同的人群中招募了800名受试者，让他们观看视频咨询过程，同时假设他们是被咨询的客户或配偶。通过这种方式，受试者将充当模拟客户(AC)，以提供客户对辅导员沟通、理解和回忆的人际和信息方面的满意度以及焦虑测量的代理。

DESCRIPTION (provided by applicant): Genetic counseling provides the translational link between the new technologies of testing and the ability of individuals to engage in a process of informed decision making. The dense and abstract nature of this information, coupled with the heightened anxiety of uncertainty and disease vulnerability that it suggests, can be overwhelming to counseling clients - both cognitively and emotionally. Outcome studies over the past 20 years have found that a significant proportion of information is misunderstood or poorly recalled; indeed, some investigators have warned that the genetic counseling experience may be a significant psychological stressor increasing rather than diminishing disease anxiety. Despite the critical role of the counseling process to client outcomes, few outcome studies have addressed the interactive verbal and emotional processes that comprise the communication of counseling sessions. Furthermore, ethnic minorities and low literate populations are largely underrepresented among users of genetic counseling services and little is known about how to best serve these populations. The current proposal is a two-phase study designed to address these critical issues. In Phase 1, 200 genetic counselors will be recruited from meetings of the National Society of Genetic Counseling (NSGC), or through regional centers, to be videotaped while interviewing trained simulated clients seeking services related to either a) prenatal test counseling for advanced maternal age and a positive family history for cystic fibrosis, or b) susceptibility testing for BRCA1 and BRCA2 gene mutations. Simulated clients who are African American or Caucasian females will be used in interviews singly or accompanied by a male simulator acting as the client's spouse during the session. Phase 2 of the study recruits 800 subjects from ethnically, geographically, and educationally diverse populations to view the videotaped counseling sessions while imagining they are the client or the spouse being counseled. In this way, the subjects will act as analogue clients (AC) to provide a proxy for client satisfaction with the interpersonal and informational aspects of the counselor's communication, comprehension and recall and measures of anxiety.