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步 科学使个人和家庭能够获得关于 基因条件以前从未出现过。到目前为止，研究的重点是 了解疾病的遗传基础、复发风险和决定 与进行基因检测有关的问题。然而，关于 检测只是父母使用遗传信息的一种情况。 父母被要求就如何以及向谁提供服务做出批判性判断 信息被传达，以及何时寻找或提供信息。目的 本研究旨在探讨青少年父母的信念与行为的相互作用。 以确定下列家庭使用的信息管理样式： 是一个患有遗传病的孩子。此外，医疗保健的作用 探讨了专业人士在帮助家庭管理遗传信息方面的作用。 具体目标：1)通过a)确定家庭信息管理方式 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 进行信息管理的关怀环境；以及c)进一步完善 使用家庭情境变量的方式生活满意度、家庭 功能和儿童功能状态；2)确定促进 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战略 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)患有遗传病的学龄儿童将包括 样本。家长将被邀请参加录制的录音带 半结构化访谈，并完成三种结构化测量工具 生活满意度、家庭功能和孩子的功能状态。 来自诊所的27名卫生保健专业人员对患有基因缺陷的儿童进行了调查 条件参与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集中于 论信息的主旋律和越界模式(风格) 家长和医疗保健专业人员的管理。聚类分析将是 用于提炼家庭信息管理方式。结果将会是 告知从事家庭工作的专业人员，并为发展做出贡献 将专家临床判断作为解决家庭问题的基础和 对儿童遗传疾病的担忧。

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.