"A change in perspective": Exploring the experiences of adolescents with hereditary tumor predisposition
"A change in perspective": Exploring the experiences of adolescents with hereditary tumor predisposition
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DOI：
10.1002/pbc.27445
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发表时间：
2019-01-01
影响因子：
3.2
通讯作者：
Druker, Harriet
中科院分区：
文献类型：
--
作者：
Weber, Evan;Shuman, Cheryl;Druker, Harriet
背景遗传性肿瘤易感综合征（HTPS）在儿科癌症的病因学中越来越常见。以往的研究表明，披露肿瘤易感性是青少年生活中的一个重要事件。了解青少年对综合征知识的调整可以指导医疗服务，特别是遗传咨询。本研究探讨了青少年遗传性肿瘤易感性的经验和他们的生活在危险中的看法。方法结果7名青少年，年龄14至17岁，代表6个不同的儿童期发病HTPS，有目的地抽样和采访使用研究特定的半结构化访谈指南。我们探讨了遗传性肿瘤易感性知识的披露过程、支持系统以及感知到的益处和危害。访谈记录通过解释性描述进行分析。数据中出现了三个主要主题：（1）知识的好处大于危害;（2）必须认识到基因检测的背景;（3）自我概念受到肿瘤风险的影响，但不受其定义。结论我们的结论是，青少年认识到与肿瘤易感性的认识相关的挑战，但也可能在他们的经验中发现积极的方面，反映了改变的生活观点。这项探索性研究的结果表明，策略，可以指导测前和测后遗传咨询的青少年HTPSs，促进自适应纳入遗传信息到青少年的自我概念。
Background Hereditary tumor predisposition syndromes (HTPSs) are being recognized more frequently in the etiology of pediatric cancer. Previous research indicates that disclosure of tumor susceptibility is a significant event in adolescents' lives. Insight into adolescents' adjustment to knowledge of their syndromes can guide healthcare delivery, particularly genetic counseling. This study explored the experiences of adolescents with hereditary tumor predisposition and their perceptions of living at risk. Methods Results Seven adolescents, ages 14 to 17, representing six different childhood-onset HTPSs, were purposively sampled and interviewed using a study-specific semistructured interview guide. We explored the disclosure process, support systems, and the perceived benefits and harms of knowledge of hereditary tumor susceptibility. Interview transcripts were analyzed via interpretive description. Three major themes emerged from the data: (1) The benefits of knowledge outweigh the harms; (2) context surrounding genetic testing must be recognized; and (3) self-concept is influenced but not defined by tumor risk. Conclusions We conclude that adolescents recognize the challenges associated with awareness of tumor predisposition but may also identify positive aspects in their experiences, reflecting a changed life perspective. Results of this exploratory study suggest strategies that can guide pretest and posttest genetic counseling of adolescents for HTPSs, facilitating the adaptive incorporation of genetic information into an adolescent's self-concept.