Influence of genetic risk information on parental role identity in adolescent girls and young women from families with fragile X syndrome.
Influence of genetic risk information on parental role identity in adolescent girls and young women from families with fragile X syndrome.
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遗传风险信息对来自脆弱X综合征家庭的青少年女孩和年轻女性的父母角色身份的影响。
DOI：
10.1007/s10897-011-9391-8
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发表时间：
2012-02
影响因子：
1.9
通讯作者：
Spiridigliozzi, Gail A.
中科院分区：
文献类型：
--
作者：
McConkie-Rosell, Allyn;Heise, Elizabeth Melvin;Spiridigliozzi, Gail A.
采用多组横断面设计，我们探讨了自我概念与父母角色的显着性和制定在53名年轻女性（14至24岁）的知识，他们要么是承运人，非承运人，或可能是一个承运人的脆性X综合征（FXS）。父母角色的突出性包括参与者“想成为母亲”的愿望和他们对这个角色的重视。会议重点讨论了参与者对如何成为母亲（生殖选择）、养育受FXS影响的孩子以及发展伴侣关系（婚姻）的看法。参与者完成了FXS青少年访谈和FX视觉模拟量表。参与者对其遗传风险状况的了解似乎影响了父母角色的显着性和制定，并且这种影响因携带者状况而异。对许多人来说，遗传风险的知识似乎导致了重新评估，重新定义和重新参与成为父母的目标。这一过程在携带者中很突出，而在高危人群中则不那么突出，而且在非携带者中通常不会发生。研究结果提供了宝贵的洞察力的影响，遗传风险信息对发展的看法父母的角色，并提供了新的方向，遗传咨询与青少年和年轻女性的家族史FXS。
Using a multi-group cross-sectional design, we explored self-concept related to parental role salience and enactment in 53 young women (14 to 24 years) with knowledge they were either carriers, non-carriers, or could be a carrier of fragile X syndrome (FXS). Parental role salience included the participants’ desire “to be a mother” and the importance they placed on this role. Enactment focused on the participants’ views regarding ways to become a mother (reproductive options), parenting a child affected by FXS, and the development of partner relationships (marriage). Participants completed the FXS Adolescent Interview and the FX-Visual Analog Scale. Participants’ knowledge of their genetic risk status appears to have influenced both salience and enactment of the parental role, and the effect varied based on carrier status. For many, knowledge of genetic risk appears to have led to reappraisal, redefinition, and re-engagement with the goal of becoming a parent. This process was prominent in those who were carriers and less so in those who were at-risk, and it did not typically occur in those who were non-carriers. Findings offer valuable insight into the impact of genetic risk information on developing perceptions of the parental role and offer new directions for genetic counseling with adolescents and young women with a family history of FXS.
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DOI：
10.1002/ajmg.10396
发表时间：
2002-06-01
期刊：
AMERICAN JOURNAL OF MEDICAL GENETICS
影响因子：
--
作者：
McConkie-Rosell, A;Spiridigliozzi, GA;Lachiewicz, AM
通讯作者：
Lachiewicz, AM
影响因子：
3.2
作者：
Lee, C;Gramotnev, H
通讯作者：
Gramotnev, H
影响因子：
1.8
作者：
Rothermund, Klaus
通讯作者：
Rothermund, Klaus
DOI：
10.1111/j.1741-1130.2010.00243.x
发表时间：
2010-03-01
影响因子：
1.7
作者：
Heller, Tamar;Arnold, Catherine Keiling
通讯作者：
Arnold, Catherine Keiling
影响因子：
3.2
作者：
Kay, E;Kingston, H
通讯作者：
Kingston, H