Two student theses were completed. Each is described below. They will all be presented at the Annual Conference for the National Society of Genetic Counselors in New Orleans, September 2014. Ellen Macnamara: The Role of Uncertainty in Coping Efficacy: The Experience of Parents of Children with Undiagnosed Medical Conditions The purpose of this study was to understand what uncertainties parents of children with undiagnosed medical conditions perceive, what factors contribute to these perceptions and how uncertainties affect coping efficacy. A cross-sectional, mixed methods study was conducted to explore the relationships among perceptions of uncertainty, coping efficacy, coping, and personality traits: tolerance of uncertainty, resilience, and optimism. The study design was informed by Lazarus and Folkman's Transactional Model of Stress and Coping. Measures included a newly developed Parental Uncertainty of Children's Health Scale that examined parents perceptions of various uncertainties and the importance of resolving these uncertainties. Parents of children with undiagnosed medical conditions were recruited through online support and advocacy groups. Among the 94 respondents, the majority were biological mothers (94%), Caucasian (94.7%) and married (76.6%). A slight majority of the children were female (57.6%). They were, on average, 8.0 years of age. Parents perceived greater uncertainty than certainty about areas of their child's undiagnosed condition that were important to them. Multivariate analysis revealed that higher levels of optimism were associated with less perceived uncertainty (p <0.01), and that perceptions of uncertainty, optimism and resilience predicted coping efficacy (p <0.05). Analysis revealed that perceptions of uncertainty are associated with appraisals of coping efficacy such that higher perceptions of uncertainty resulted in lower coping efficacy. Our findings suggest that parents of children with undiagnosed medical conditions perceive significant uncertainty about social support and medical management, which they view as important to resolve. Personality traits are related to the type of coping strategies parents employ. Finally, this study contributes to the broader understanding of perceptions of uncertainty and the potential impact of these perceptions for parents of children with undiagnosed medical conditions. Rachel Shapira: Adaptation to living with a BRCA1/2 mutation in carriers and their partners Women who carry BRCA1/2 mutations have a significantly elevated risk for breast and ovarian cancer. While the genetic testing experience can be a major stressor in the lives of these women, it is only one of many to come. Following a positive result, many decisions must be made, particularly in regards to surveillance and risk-reducing surgery. Both screening and surgical options can cause distress and anxiety, not only for the carriers themselves, but for their intimate partners as well. There has been little exploration of potential positive impacts of living with a BRCA1/2 mutation, though some qualitative work, as well as research in similar populations indicates that there are positive aspects to be found. Currently, there is limited understanding of how these women adapt to living with genetic risk. Further, their partners adaptation to living with this risk remains unexplored. This study seeks to understand the process of adaptation in unaffected BRCA1/2 positive women and their intimate partners. This is the first study to examine psychological adaptation in individuals living with genetic risk for cancer, as well as the first dyadic-level study of BRCA1/2 carriers and their partners. Understanding the experiences of these couples may help identify areas for future intervention studies to improve adaptation in similar populations. Female BRCA1/2 carriers and their partners were invited to complete surveys designed to quantitatively explore the relationships between the appraisals and timing of risk-related stressors, dyadic coping, and the outcomes of adaptation and dyadic adjustment. Of the many stressors examined, women who had undergone prophylactic bilateral mastectomy (PBM) had significantly higher levels of adaptation than those who had not. Further, their partners had significantly higher adaptation as well. Among women who had not had prophylactic mastectomy, those with higher perceived risk scores were less adapted. In general, the participants had high levels of dyadic adjustment and dyadic coping, indicating good overall relationship quality. These results aid in the understanding of the experience of living with cancer risk and the factors related to adaptation. The relatedness of carrier surgical status to partner adaptation points to the importance of including intimate partners in the genetic counseling and risk management decision-making processes of BRCA1/2 carriers. Further, these results provide direction for future study to further elucidate the relationship between PBM and adaptation.
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