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.
Showing the most recent 10 out of 19 publications
