Living with genetic risk: Effect on adolescent self-concept
Living with genetic risk: Effect on adolescent self-concept
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DOI：
10.1002/ajmg.c.30161
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发表时间：
2008-02-15
影响因子：
3.1
通讯作者：
Lachiewicz, Ave M.
中科院分区：
文献类型：
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作者：
Mcconkie-Rosell, Allyn;Spiridigliozzi, Gaol A.;Lachiewicz, Ave M.
本研究的目的是描述青春期女孩和年轻女性的自我概念，应对行为和调整与脆性X综合征的遗传风险知识的相互作用。我们将在这里报告自我概念的发现。本研究采用多组横断面设计，重点研究了来自先前诊断为脆性X综合征的家庭的14-25岁女孩，她们知道自己是（1）携带者（n = 20;平均年龄18.35岁，s.d.（2）非携带者（n = 18;平均年龄17.78岁，2.69），或（3）有成为携带者的风险（n = 15;平均年龄17.87 s.d. 3.18）。这些女孩完成了田纳西自我概念量表（TSCS：2），一个视觉模拟量表，和一个指导性的采访。所有三组的TSCS：2总分和所有子量表评分均在正常范围内。然而，自我概念的威胁被发现在个人自我（身体自我，遗传身份和父母的角色），社会自我和家庭自我（家庭遗传身份），因为它们具体涉及到遗传信息的意义和不同的风险状态。我们的研究结果表明，风险信息本身是威胁性的，对一些女孩来说，可能像学习一个载体一样具有威胁性。与遗传风险状况有关的知识似乎对一些女孩产生了积极的影响，使她们有机会面对其遗传风险状况的挑战，并开始考虑这一信息的意义。(c)2008 Wiley-Liss，Inc.
The purpose of this study is to describe the interplay of adolescent girls' and young womens' self-concept, coping behaviors, and adjustment associated with knowledge of genetic risk for fragile X syndrome. We will report here findings on self-concept. Using a multi-group cross-sectional design this study focused on girls ages 14-25 years from families previously diagnosed with fragile X syndrome, who knew they were (1) carriers (n = 20; mean age 18.35 years s.d. 2.5), or (2) noncarriers (n = 18; mean age 17.78 years s.d. 2.69), or (3) at-risk to be carriers (n = 15; mean age 17.87 s.d. 3.18). The girls completed the Tennessee Self-Concept Scale (TSCS:2), a visual analog scale, and a guided interview. Total and all subscale scores on the TSCS:2 were in the normal range for all three groups. However, threats to self-concept were found in personal self (physical self, genetic identity, and parental role), social self, and family self (family genetic identity) as they specifically related to the meaning of genetic information and varied based on risk status. Our findings suggest that risk information itself is threatening and for some girls, may be as threatening as learning one is a carrier. Certainty related to genetic risk status appears to make a positive difference for some girls by allowing them the opportunity to face the challenge of their genetic risk status and to begin to consider the meaning of this information. (c) 2008 Wiley-Liss, Inc.