Parent Communication of BRCA1/2 Test Results to Child

描述：(申请人提供)家长参加BRCAI/2测试的主要动机之一是了解他们未成年的孩子患癌症的风险。然而，父母们经常报告说，一旦这些信息可以获得，他们就会感到苦恼和冲突，不愿与孩子分享这些信息。由于很少有父母在评估向儿童披露信息的潜在风险和好处时得到专业指导，父母可能容易在沟通方面做出无效的决定，这可能会导致不利的心理社会后果。随着临床基因检测变得越来越普遍，这带来了一个伦理挑战，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，以检查向孩子披露母亲BRCA1/2测试结果的决策，以及父母在接受测试的母亲和未接受测试的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，数据收集将采用定性和定量访谈程序。具体目的是：(1)确定母亲向未成年子女披露BRCA1/2测试结果的比率，并确定决定是否披露BRCA1/2测试结果的决定因素；(2)评估BRCA1/2测试结果和父母共同决策对父母沟通选择的影响；以及(3)评估BRCA1/2测试结果沟通决策对心理社会健康的影响。这项研究的研究对象是250个完整的母亲-父亲双亲，他们的孩子年龄在8-17岁之间，母亲参加了BRCA1/2测试计划，而父亲没有接受测试。其中20人的子集还将完成定性访谈，以使我们能够更详细地描述动机、父母决策和情感影响，并确定这些因素在沟通和心理社会结果中的作用。在母亲参加测试前教育和遗传咨询之后，但在母亲收到测试结果之前，将与父母双方进行基线评估，以收集关于背景/控制变量(社会人口学、医疗和家庭因素、沟通史)、决策预测变量(披露意图、警觉、决策平衡、决策冲突)以及心理社会预测变量/结果变量的基线水平(动机、评估、一般和基因测试痛苦、育儿联盟、亲子沟通)的信息。后续访谈将在测试后咨询/收到测试结果后1个月和6个月进行，以收集结果数据(向儿童披露测试结果、决策满意度、心理社会幸福感)。在多元回归模型中，主要的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.