Talking to Children About Maternal BRCA1/2 Genetic Test Results: A Qualitative Study of Parental Perceptions and Advice

Abstract

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.

Distress and the parenting dynamic among BRCA1/2 tested mothers and their partners.

“…Early findings suggested that among families with mothers undergoing BRCA1/2 testing, children with greater psychological stress had more frequent thoughts of becoming sick and greater worries about cancer (Tercyak, Peshkin, Streisand, & Lerman, 2001). More recent research demonstrates that outcomes for parents and children in this context are influenced by several factors, such as the strength of the parent-child relationship and how genetic risk information is conveyed (Patenaude et al, 2012). There remains a need for empirical research determining how decision-making and psychological distress surrounding family communication of BRCA1/2 test results drive children's well-being so that supportive interventions can be developed and deployed.…”

Providing Care for Previvors: Implications for Oncology Nurses

“…Parents may or may not convey information about risk of having a mutation accurately (Patenaude et al, 2013). Many parents are faced with the decision to tell children when a mother undergoes prophylactic surgery (Farkas Patenaude et al, 2012). The importance of honesty and Provides resources and support for women of Jewish ancestry who have a genetic predisposition for developing cancer • Phone support • Local support groups • Education and publications emphasizing that a mother is taking all steps to prevent future problems should not be underestimated.…”

Women’s concerns about the emotional impact of awareness of heritable breast cancer risk and its implications for their children

“…Although many women report pursing BRCA1/2 counseling and testing to learn about hereditary cancer risk information for the benefit of their family members (Tercyak et al 2002), patient decisions to disclose results to their kindred are often driven by anticipation of how they will react emotionally to learning their test result (Dorval et al 2000;Farkas Patenaude et al 2013). Therefore, greater attention to emotional forecasting of the outcomes of this decision-making process could allow for interventions to reduce negative anticipation among mothers.…”