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家族遗传性乳腺癌/卵巢癌风险检测中的癌症遗传健康沟通:对儿童遗传健康素养和心理社会适应影响的定性研究。

Cancer genetic health communication in families tested for hereditary breast/ovarian cancer risk: a qualitative investigation of impact on children's genetic health literacy and psychosocial adjustment.

机构信息

Lombardi Comprehensive Cancer Center, Georgetown University Medical Center, Washington, DC, USA.

Center for Child and Human Development, Georgetown University Medical Center, Washington, DC, USA.

出版信息

Transl Behav Med. 2019 May 16;9(3):493-503. doi: 10.1093/tbm/ibz012.

Abstract

Children's literacy about the genetics of late-onset hereditary breast/ovarian cancer (HBOC) often develops through conversations with parents about BRCA gene testing and adults' cancer diagnoses. These conversations may promote early understanding of HBOC, but the long-term impact on children's psychosocial adjustment remains unclear. We investigated cancer genetic health communication in BRCA-tested families to consider benefits, risks, and moderating influences on children's understanding and well-being. Adolescent and young adult children (ages 12-24) of mothers who underwent BRCA testing 1+ years previously completed qualitative interviews that were transcribed, coded (intercoder K ≥ .70), and content-analyzed (N = 34). Children readily recalled conversations about BRCA testing and HBOC (100%) that they considered important (94%), but implications for children were ambiguous and obfuscated their concerns. Psychosocial impacts were muted, multifaceted, and displayed a range of favorable (82%), neutral (71%), and unfavorable (59%) response-frequently co-occurring within the same child over different aspects (e.g., medical, concern for self and others). Children verbalized active (50%) and avoidant (38%) coping strategies: about 1:5 endorsed transient thoughts about vulnerability to HBOC, 1:3 had not further considered it, and all reported specific actions they had or would undertake to remain healthy (e.g., diet/exercise). A majority (94%) of children had or would consider genetic testing for themselves, usually later in life (59%). Long-term outcomes highlighted benefits (awareness of HBOC, psychological hardiness, healthier lifestyle behaviors), as well as some psychosocial concerns that could be managed through interventions promoting genetic health literacy.

摘要

儿童对迟发性遗传性乳腺癌/卵巢癌(HBOC)的遗传学的认识通常是通过与父母关于 BRCA 基因检测和成人癌症诊断的对话发展而来。这些对话可能会促进对 HBOC 的早期理解,但对儿童心理社会适应的长期影响尚不清楚。我们调查了 BRCA 检测家庭中的癌症遗传健康沟通,以考虑对儿童理解和幸福感的益处、风险和调节影响。母亲接受 BRCA 检测 1 年以上的青少年和年轻成年子女(12-24 岁)完成了定性访谈,访谈内容被转录、编码(互信度 K≥.70),并进行了内容分析(N=34)。儿童很容易回忆起关于 BRCA 检测和 HBOC 的对话(100%),他们认为这些对话很重要(94%),但对儿童的影响是模糊的,模糊了他们的担忧。心理社会影响是温和的、多方面的,表现出一系列有利(82%)、中性(71%)和不利(59%)的反应-在同一个孩子的不同方面经常同时出现(例如,医学上的、对自己和他人的担忧)。儿童表达了积极(50%)和回避(38%)的应对策略:约 1:5 赞同对 HBOC 易感性的短暂想法,1:3 没有进一步考虑,所有人都报告了他们已经或将要采取的保持健康的具体行动(例如,饮食/运动)。大多数(94%)的儿童已经或将来会考虑为自己进行基因检测,通常是在以后的生活中(59%)。长期结果强调了益处(对 HBOC 的认识、心理韧性、更健康的生活方式行为),以及一些可以通过促进遗传健康素养的干预措施来管理的心理社会问题。

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