What about adolescence? Living with genetic risk

青春期又怎样呢？

• 批准号: 6812271
• 负责人: ALLYN MCCONKIE-ROSELL
• 金额: $ 7.7万
• 依托单位: DUKE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2004
• 资助国家: 美国
• 起止时间: 2004-08-05 至 2006-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6812271
• 关键词: adolescence (12-20); behavioral /social science research tag; child psychology; clinical research; coping; decision making; family genetics; family planning; female; fragile X syndromes; genetic carriers; genetic counseling; genetic disorder diagnosis; genetic screening; genetic susceptibility; human subject; interpersonal relations; interview; mother child interaction; parents; perception; psychological adaptation; self concept; sex linked trait; women' s health

DESCRIPTION (provided by applicant): Understanding of the consequences to children of learning genetic risk information is based primarily on data extrapolated from adults. No studies have been done that assess the relationship between knowledge of genetic risk and a child's self-concept. We also have yet to learn how children cope with genetic information and how their coping strategies are affected by their parents' approach to coping. The purpose of this study is to describe the relationship among adolescent girl's self-concept, coping, and adjustment associated with knowledge of genetic risk of an X-linked disorder, fragile X. We will also describe strategies mothers use to help their daughters cope with this information. Using a multigroup cohort design, we will study 60 girls (15- 18 yrs) and their mothers from families with fragile X. We will enroll mother/daughter dyads with 3 categories of knowledge about the girl's genetic risk: 1) carrier, 2) noncarrier, and 3) at-risk to be a carrier. Each mother/daughter dyed will complete a number of quantitative and qualitative measures. Our specific aims are to: 1) Describe self-concept, coping, and adjustment in adolescent girls with knowledge of their genetic risk (carrier, noncarrier, and at-risk) for an X-linked disorder. 2) To describe a) how mothers have chosen to discuss genetic risk information with their daughters, b) parental "coaching" of coping behaviors, and c) their perceptions of how their daughters are managing this information. 3) Describe adolescent girls' knowledge of fragile X and how it is inherited; how they learned their carrier, noncarrier, or at-risk status; their own definitions of the words carrier, noncarrier, and at-risk; and how they think knowledge of genetic risk influences family and peer relationships. 4) To establish baseline measurements on a cohort of adolescent girls with these 3 categories of knowledge of genetic risk so that we can follow the developing self-concept in future longitudinal studies considering developmental tasks, coping behaviors, adjustment, and parental role experimentation. We hypothesize that: a. Carrier and at-risk adolescent girls will be more similar than noncarriers in self-concept, coping, and adjustment, b. Carrier and at-risk adolescent girls who place a high value on a future parental role will have a lower self-concept than those that do not.

描述（由申请人提供）： 了解儿童学习遗传风险信息的后果主要是基于从成人推断的数据。目前还没有研究评估遗传风险知识与儿童自我概念之间的关系。我们还需要了解儿童如何科普遗传信息，以及他们的应对策略如何受到父母应对方式的影响。本研究旨在探讨女性青少年自我概念、因应方式、调适方式与X连锁遗传疾病（脆性X）遗传风险认知的关系。 我们还将描述母亲用来帮助女儿科普这些信息的策略。采用多组队列设计，我们将研究来自脆性X染色体家族的60名女孩（15- 18岁）及其母亲。 我们将招募具有3类关于女孩遗传风险的知识的母亲/女儿配对：1）携带者，2）非携带者，3）有成为携带者的风险。每一个被染色的母亲/女儿将完成一些定量和定性的措施。我们的具体目标是：1）描述自我概念，应对，并在青春期女孩与知识的遗传风险（载体，非载体，并在风险）为X连锁疾病的调整。2)描述a）母亲如何选择与女儿讨论遗传风险信息，B）父母对应对行为的“指导”，以及c）他们对女儿如何管理这些信息的看法。3)描述青春期女孩对脆性X的了解及其遗传方式;她们如何了解自己的携带者、非携带者或处于风险状态;她们自己对携带者、非携带者和处于风险状态的定义;以及她们认为遗传风险知识如何影响家庭和同伴关系。4)建立一个具有这三类遗传风险知识的青春期女孩队列的基线测量，以便我们可以在未来的纵向研究中跟踪发展自我概念，考虑发展任务，应对行为，调整和父母角色实验。我们假设：A。携带者和高危少女在自我概念、应对和适应方面比非携带者更相似，B。携带者和处于危险中的青春期女孩谁把未来的父母角色的价值高，将有一个较低的自我概念比那些不。