Parents' Interpretation and Use of Genetic Information

描述（由申请人提供）：遗传学领域的最新技术进展 科学使个人和家庭能够获得关于 遗传条件前所未有。到目前为止，研究集中在 了解疾病的遗传基础，复发风险和决策 与进行基因检测有关。然而，关于 检测只是父母使用遗传信息的一种情况。 父母被要求对如何以及向谁进行 以及何时寻求或提供信息。的目的 本研究旨在探讨父母的信念与行为之间的相互作用， 为了确定家庭使用的信息管理风格， 是一个有遗传病的孩子此外，医疗保健的作用 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） 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 信息管理发生的护理背景;以及c）进一步完善 使用家庭背景变量的生活满意度、家庭 功能和儿童功能状态; 2）确定促进因素 或妨碍父母接触、解释、传达和使用 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到100个家庭 （N=182名父母）的学龄儿童的遗传条件将包括 示例.家长将被邀请参加一个录音带记录 半结构化访谈，并完成三个结构化工具测量 生活满意度、家庭功能和儿童功能状态。 来自诊所的27名卫生保健专业人员， 条件出席者也将被邀请接受采访，他们的作用， 信息管理访谈数据的定性分析将集中在 关于确定信息的主要主题和过度模式（风格） 家长和医护人员的管理。聚类分析将 用于细化家庭信息管理样式。结果将 为从事家庭工作的专业人员提供信息， 专家的临床判断作为解决家庭问题的基础， 担心孩子的遗传状况

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.