Resilience in the Face of Fragile X Syndrome
Resilience in the Face of Fragile X Syndrome
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DOI：
10.1177/1049732312451871
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发表时间：
2012-10-01
影响因子：
3.2
通讯作者：
Theron, Linda C.
中科院分区：
文献类型：
--
作者：
Fourie, Chantel L.;Theron, Linda C.
在这篇文章中，我们交流了一个关于一名患有脆性X综合征（FXS）的年轻女性的韧性的案例研究的变革性发现，FXS是一种涉及精神障碍和身体，情感和行为挑战的遗传疾病。我们探讨了“露西”的弹性，一个活泼的16岁的北美人，使用非正式采访她，正式采访她的生活中重要的成年人，和观察（视觉和轶事）超过20个月。在报告露西的信息丰富的情况下，她的生态系统很好地支持了她超越全突变FXS，我们鼓励与FXS一起生活的积极观点。虽然我们认识到单个案例研究的局限性，但我们的研究结果提供了对遗传残疾背景下的弹性的尝试性，以过程为导向的见解，以前未与FXS一起报道。我们得出的结论是，露西的复原力的过程部分是她的责任，部分是她的社会生态，包括自我能动性、无条件的积极接受和归属感，以及对掌握的支持。
In this article, we communicate transformative findings from a case study on the resilience of a young woman with fragile X syndrome (FXS), a genetic condition involving mental impairment and physical, emotional, and behavioral challenges. We explored the resilience of "Lucy," a spirited 16-year-old North American, using informal interviews with her, formal interviews with significant adults in her life, and observations (visual and anecdotal) over 20 months. In reporting the information-rich case of Lucy, well supported by her ecology to rise above full-mutation FXS, we encourage a positive perspective of living with FXS. Although we recognize the limitations of a single case study, our findings offer tentative, process-oriented insights into resilience in contexts of genetic disability, previously unreported in conjunction with FXS. We concluded that the processes informing Lucy's resilience were partly her responsibility and partly her social ecology's, and comprised intrapersonal agency, unconditional positive acceptance and belonging, and support toward mastery.