Parent Communication of BRCA1/2 Test Results to Child

产品说明：（申请人提供）父母参加BRCAI/2检测的主要动机之一是了解其未成年子女患癌症的风险。 然而，父母经常报告说，一旦有了这些信息，他们就会感到苦恼和矛盾。 由于很少有父母在评估向儿童披露信息的潜在风险和益处方面得到专业指导，因此父母可能倾向于在沟通方面做出无效的决定，这可能导致不良的心理社会后果。 随着临床基因检测变得越来越普遍，这提出了一个伦理挑战，需要更好地理解，以便能够实施促进积极结果的干预措施。 研究人员提出了一项前瞻性的纵向研究，以检查关于向儿童披露母亲BRCA 1/2测试结果的决策，以及父母在测试母亲和未测试父亲之间的沟通选择的心理社会结果。 本次调查的理论框架是决策冲突理论，数据将通过定性和定量访谈程序收集。具体目标是：（1）确定母亲向未成年子女披露BRCA 1/2测试结果的比例，并确定决定披露或不披露的决定因素;（2）评估BRCA 1/2测试结果和父母共同决策对父母沟通选择的影响;（3）评估BRCA 1/2测试结果沟通决定对心理社会福祉的影响。 本研究的受试者是250名年龄在8-17岁之间的孩子的完整的母亲-父亲父母，其中母亲参加了BRCA 1/2测试项目，而父亲没有接受测试。 这些二人组中的20人也将完成定性访谈，使我们能够更详细地描述动机，父母决策和情感影响，并定义这些因素在沟通和心理社会结果中的作用。 在母亲接受测前教育及遗传辅导后，但在母亲收到测试结果前，会与父母双方进行基线评估，以收集背景/控制变数的数据（社会人口统计学、医疗和家庭因素、沟通史）、决策预测变量（披露意图、警惕性、决策平衡、决策冲突）和心理社会预测因子/结果变量的基线水平（动机，评价，一般和基因测试困扰，育儿联盟，亲子沟通）。 在测试后咨询/收到测试结果后的1个月和6个月，将进行后续访谈，以收集结果数据（向儿童披露测试结果、决策满意度、心理社会健康）。 多元回归模型中的主要群体比较将在披露和不披露的母亲之间进行。

DESCRIPTION: (provided by applicant) One of the primary motivations for parents to participate in BRCAI/2 testing is to find out about their minor children's risk of developing cancer. However, parents often report feeling distressed and conflicted about sharing this information with their youngsters once it is available. As few parents receive professional guidance in evaluating the potential risks and benefits of disclosure to children, parents may be prone to make ineffective decisions about communication that could lead to adverse psychosocial outcomes. As clinical genetic testing becomes increasingly more common, this presents an ethical challenge that needs to be better understood so that interventions to promote positive outcomes can be implemented. The investigators propose a prospective, longitudinal study to examine decision-making about disclosing a maternal BRCA1/2 test result to children and the psychosocial outcomes of parents' communication choices among tested mothers and non-tested fathers. The theoretical framework for this investigation is the Conflict Theory of Decision Making and data will be collected using qualitative and quantitative interview procedures. The specific aims are to: (1) establish rates of mothers' disclosure of a BRCA1/2 test result to minor children and to identify the determinants of the decision to disclose or not disclose; (2) evaluate the impact of BRCA1/2 test result and mother-father shared decision making on parents' communication choices; and (3) evaluate the impact of BRCA1/2 test result communication decisions on psychosocial well-being. The subjects in this study are 250 intact mother-father parenting dyads with children ages 8-17 years, where mothers participate in a BRCA1/2 testing program and fathers are not tested. A subset of 20 of these dyads will also complete qualitative interviews to allow us to describe motivation, parental decision making, and emotional impact in greater detail and to heifer define the role of these factors in communication and psychosocial outcomes. A baseline assessment will be conducted with both parents after mothers have attended pre-test education and genetic counseling, but prior to mothers' receipt of their test result, to collect information on background/controlling variables (sociodemographics, medical and family factors, communication history), decision making predictor variables (intentions to disclose, vigilance, decisional balance, decisional conflict), and baseline levels of psychosocial predictor/outcome variables (motivations, appraisals, general and genetic testing distress, parenting alliance, parent-child communication). Follow-up interviews will be conducted 1- and 6-months after post-test counseling/receipt of test result to collect outcome data (disclosure of test result to child, decision satisfaction, psychosocial well-being). The primary group comparisons in multiple regression models will be between mothers who disclose and those who do not disclose.