Parents' Interpretation and Use of Genetic Information

父母对遗传信息的解释和使用

• 批准号: 6526549
• 负责人: Agatha M. Gallo
• 金额: $ 38.89万
• 依托单位: UNIVERSITY OF ILLINOIS AT CHICAGO
• 依托单位国家: 美国
• 财政年份: 2001
• 资助国家: 美国
• 起止时间: 2001-08-17 至 2005-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6526549
• 关键词: attitude; audiotape; behavioral /social science research tag; belief; case history; computer data analysis; computer program /software; decision making; family genetics; family structure /dynamics; genetic counseling; genetic susceptibility; health care personnel; health care service utilization; health education; health services research tag; human subject; information systems; interview; longitudinal human study; parent offspring interaction; questionnaires; socioenvironment; sociometry

DESCRIPTION (provided by applicant): Recent technological advances in genetic science have allowed individuals and families to acquire information about genetic conditions never before available. To date, research has focused on understanding the genetic basis of disorders, reoccurrence risk, and decision making related to performing genetic testing. Yet, decision making about testing is only one circumstance in which parents use genetic information. Parents are called upon to make critical judgments on how and to whom the information is conveyed and when to seek or provide information. The purpose of this study is to explore the interplay of parents' beliefs and behaviors in order to identify information management styles used by families in which there is a child with a genetic condition. In addition, the role that health care professionals play in helping families manage genetic information is explored. Specific aims: 1) Identify family information management styles by a) describing the parents' knowledge, beliefs and behavioral strategies for interpreting and using genetic information; b) describing the family and health care context in which information management occurs; and c) further refining the styles using family context variables of life satisfaction, family functioning, and child functional status; 2) Identify factors that facilitate or impede the parents' ability to access, interpret, convey, and use information; 3) Describe health professionals' beliefs and strategies for helping care professionals. Using a noncategorical approach, 75 to 100 families (N=182 parents) of a school-aged child with a genetic condition will comprise the sample. Parents will be invited to participate in a tape recorded semi-structured interview, and complete three structured instruments measuring life satisfaction, family functioning, and child's functional status. Twenty-seven health care professionals from clinics the child with a genetic condition attends will also be invited to be interviewed about their role in information management. Qualitative analysis of the interview data will focus on identifying major themes and overreaching patterns (styles) of information management of parents and health care professionals. Cluster analysis will be used to refine the family information management styles. The results will inform professionals working with families, and contribute to the development of expert clinical judgment as a basis for addressing families' questions and concerns about a child's genetic condition.

描述（由申请人提供）：遗传领域的最新技术进展 科学使个人和家庭能够获取有关 以前从未有过的遗传条件。迄今为止，研究主要集中在 了解疾病的遗传基础、复发风险和决策 与进行基因测试相关的制作。然而，有关决策 测试只是父母使用遗传信息的一种情况。 家长需要就如何以及向谁提供关键的判断 信息的传达以及何时寻求或提供信息。目的 本研究旨在探讨父母的信念和行为之间的相互作用 为了确定家庭使用的信息管理方式 是一个患有遗传病的孩子。此外，医疗保健的作用 探讨了专业人员在帮助家庭管理遗传信息方面的作用。 具体目标： 1) 通过 a) 确定家庭信息管理风格 描述父母的知识、信念和行为策略 解释和使用遗传信息； b) 描述家庭和健康状况 信息管理发生的护理环境； c) 进一步细化 使用生活满意度、家庭等家庭背景变量的风格 功能和儿童功能状态； 2）确定促进因素 或妨碍父母访问、解释、传达和使用的能力 信息; 3) 描述卫生专业人员的信念和策略 帮助护理专业人员。使用非分类方法，75 至 100 个家庭 患有遗传病的学龄儿童（N = 182 名家长）将包括 样品。家长将被邀请参加录音 半结构化面试，并完成三项结构化工具测量 生活满意度、家庭功能和儿童的功能状态。 来自诊所的 27 名医疗保健专业人员患有遗传性疾病 条件出席者还将被邀请接受采访，了解他们在 信息管理。访谈数据的定性分析将重点 确定主要主题和信息的过度模式（风格） 父母和医疗保健专业人员的管理。聚类分析将 用于细化家庭信息管理方式。结果将 为从事家庭工作的专业人士提供信息，并为发展做出贡献 专家临床判断作为解决家庭问题的基础 对孩子遗传状况的担忧。