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"Patenaude, Andrea Farkas"
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Prophylactic mastectomy : insights from women who chose to reduce their risk
\"This book presents the candid stories of women who chose to have their breasts surgically removed while they were still healthy, after genetic testing showed they possessed a gene that heightens their risk of developing breast cancer\"--Provided by publisher.
Book
Talking to Children About Maternal BRCA1/2 Genetic Test Results: A Qualitative Study of Parental Perceptions and Advice
Family communication is the primary, initial means of educating the next, at-risk generation about hereditary cancer risk. In this study, in-depth parent narratives provided self-report of motivations, planning, satisfactions and regrets associated with sharing or not sharing maternal
BRCA1/2
test results with young children and advice for parents considering disclosure and for genetic counselors. Interviews were conducted with 32 mothers tested for
BRCA1/2
with children ages 8–21 years and 24 of their co-parents; interview narratives were analyzed qualitatively. Parents were concerned with both protecting and educating children about hereditary cancer risk. They expressed confidence that parents can constructively convey genetic information to minor children. Telling relieved most parents and satisfied a sense of parental duty. Parents strongly advised child-specific, age-appropriate tailoring of genetic information and emphasized conveying the positive, preventive utility of genetic information to children. Immunizing effects of disclosure were viewed as providing forewarning about and preparation for possible later family cancer diagnoses. Parents choosing not to tell children were advised to consider future disclosure. Narratives about parental sharing of
BRCA1/2
test results with minor children support the feasibility of parental discussion of maternal genetic test results to the next at-risk generation. Results suggest development of intervention tools for parents would support decision-making and family communication and potentially reduce parental worry and regret. Recommendations are made for more active involvement by genetic counselors with tested parents around the topic of delivery of genetic information to children.
Journal Article
Pediatric Psycho-Oncology
Pediatric Psycho-Oncology is a comprehensive handbook that provides best practice models for the management of psychological, cognitive, and social outcomes of adolescents living with cancer and their families. Chapters cover a wide range of topics including psychological aspects of particular pediatric cancers and their treatments, how to talk to a child and family at critical times during the disease course, genetic testing, individual, family, educational, psychological and psychiatric interventions, and caring for international patients.
eBook
Issues Arising in Psychological Consultations to Help Parents Talk to Minor and Young Adult Children about their Cancer Genetic Test Result: a Guide to Providers
The defining difference between genetic and traditional medicine is that genetic findings have implications not just for the patient, but also for their relatives. Discussion of a test result between parent and child is both a transformative and a translational moment in the life of a family. Parents report wanting help in talking to their children. The challenge for genetic counselors and other providers is to be able to recognize which issues are at the core of parental distress and be able to offer recommendations to empower and support parents. The complexity of potential genetic findings, including variants of uncertain significance (VUS) and incidental findings have vastly increased, requiring considerable explanation and leaving less time for discussion of emotional issues. While the nature of the testing (single gene to multigene panel and genomic testing) is dramatically changing, the nature of parent concerns remains remarkably constant. Families differ in many respects, so no “recipe” suffices to answer parents’ questions about how this important task should be approached in each family. Successful consultation to parents requires true counseling, matching parents’ fears and questions with information, exploration and advice specific to their concerns, their circumstances and strengths.
Journal Article
100 years lynch syndrome: what have we learned about psychosocial issues?
In the care of patients with Lynch Syndrome (LS), a range of psychosocial issues are encountered, which significantly affect patient outcomes. A brief historical background of ‘psycho-onco-genetics’ (the domain where psychology, oncology and genetics meet) in relation to LS is presented, followed by an overview of important psychosocial issues identified in the past 20 years. The identification of mismatch repair genes in 1993–1994 made possible genetic counseling and testing for patients who had cancer and for potentially high-risk relatives without cancer. At that time, concerns were raised about the potentially negative psychosocial impact of predictive genetic testing. Since 1993, a large number of studies have been conducted to investigate the possible psychosocial benefits and limitations of such testing. This article presents an overview of: the uptake of and motivations for genetic testing, its psychosocial impact (e.g. psychological adaptation, impact on risk perception and self-concept, and concerns about, and experiences of, genetic discrimination), psychological screening instruments, adherence to and decision-making about preventive strategies, family communication, lifestyle changes, reproductive technology utilization, and professional psychosocial support needs of members of families with LS. Finally, challenges for the future are discussed, including population screening and genomic testing.
Journal Article
Incidence and predictors of positive and negative effects of BRCA1/2 genetic testing on familial relationships: a 3-year follow-up study
Purpose:
Little is known about the long-term impact of
BRCA1/2
testing on the relationships between family members. We assessed the incidence of positive and negative family relationship effects of
BRCA1/2
testing in the 3 years after result disclosure and identified predictors of these effects.
Methods:
A total of 485 women and 67 men who had undergone
BRCA1/2
testing were asked 3 years later whether having been tested had improved and/or disrupted relationships with their relatives. The associations with sociodemographic, medical, and psychosocial characteristics were assessed.
Results:
Globally, 85.1% did not report any positive or negative effects of genetic testing on family relationships. Positive and negative effects were reported by 13.2% and 3.7% of participants, respectively. Reporting positive relationship effects was associated with older age, intolerance for uncertainty, cancer-specific distress, and more social support. Low education, positive attitude toward prophylactic mastectomy, and low social support increased the likelihood of negative effects.
Conclusion:
Our findings do not support the belief that family relationships are frequently disrupted by
BRCA1/2
testing. Understanding that most family relationships are unchanged long term by genetic testing may help genetic service providers encourage those considering testing to overcome hesitancy related to potential difficulties of communicating results to relatives.
Genet Med
2012:14(1):60–68.
Journal Article
Women’s concerns about the emotional impact of awareness of heritable breast cancer risk and its implications for their children
Women tested for mutations in BRCA1/2 genes who have minor-aged children confront difficult decisions about if, when, and how to share information about hereditary cancer risk with their children. These choices are often seemingly influenced by how mothers anticipate the emotional burdens they and their children will experience in response to test results. Here, we investigate the association between maternal cognitions, pretest psychological well-being, and coping style with mothers’ anticipated emotional reactions to learning that they are BRCA1/2 mutation carriers (N = 205). In a linear regression model adjusted for maternal demographics, stronger tendencies to ruminate about information (B = .14, p = .03), greater psychological strain (B = .14, p < .001), and poorer appraisals of one’s ability to cope with genetic test results conveying increased breast cancer risk information (B = −.25, p < .001) were significantly associated with anticipating more negative affect surrounding BRCA1/2 mutation identification in mothers. Our data contribute to the growing awareness of special concerns that mothers have about knowing their BRCA1/2 mutation status and highlight the need for more tailored patient education and counseling resources to improve outcomes among women at risk and their children.
Journal Article