Talking across generations: Family communication aboutBRCA1andBRCA2genetic cancer risk

Abstract

While family communication about a BRCA1 or BRCA2 (BRCA1/2) pathogenic variant can be a catalyst for the uptake of risk‐reducing measures in young adults, disseminating information within families and across generations is complex. This study aimed to explore how young adults and their families communicate about a BRCA1/2 pathogenic variant, from a family systems perspective. In‐depth family interviews and questionnaires (N = 67 individuals; 21 families) were completed at four metropolitan and regional genetic clinics in Australia. Data involved thematic analysis and interpretation based on family systems theory, including the use of standardized measures. Six key themes were identified and explored: (1) Responsibility to protect, (2) “It's a woman's problem,” (3) Family culture influences communication, (4) Adversarial growth and connection, (5) Key events can be relational turning points, and (6) Health professionals can help. Family identities were solidified through the incorporation of a pathogenic variant in family scripts, while members of the family who held differing views to their families expressed less agreeableness and openness to disseminate information. The collective family's experience and perspective toward a pathogenic variant can influence a young adult's decision‐making about genetic testing, risk‐management, and family planning. The utilization of family therapy skills in routine practice would be helpful in facilitating communication and the inclusion of standardized measures is beneficial to identify individuals needing ongoing psychological support. Understanding relationship difficulties that arise from family members holding divergent views can offer insight into future research inquiry and areas of further training and clinical support.

Parent of Origin Effects on Family Communication of Risk in BRCA+ Women: A Qualitative Investigation of Human Factors in Cascade Screening

“…To identify targets for interventions aimed at enhancing family communication of risk and promoting cascade screening, we combined the TPB mapping exercise with sub-codes relating to the healthcare system (template theme: ‘medical biases’). This ecological approach identified individual, family and institutional targets for interventions [ 35 ]. Proposed interventions ( Table 5 ) targeting the individual include employing principles of behavioral economics and motivational interviewing.…”

“…However, families have variable responses to BRCA status ranging from complete openness to limited disclosure to total secrecy [ 38 ]. Moreover, men in at-risk families have lower uptake of BRCA testing [ 39 , 40 ] and express greater difficulty divulging BRCA test results with at-risk relatives [ 35 , 39 ]. The sub-codes we identified within the template theme of ‘gender scripting’ align with observed gender differences in communication and the spectrum of familial response [ 35 , 38 , 39 ].…”

“…Moreover, men in at-risk families have lower uptake of BRCA testing [ 39 , 40 ] and express greater difficulty divulging BRCA test results with at-risk relatives [ 35 , 39 ]. The sub-codes we identified within the template theme of ‘gender scripting’ align with observed gender differences in communication and the spectrum of familial response [ 35 , 38 , 39 ]. Importantly, greater satisfaction with BRCA testing decision (and less regret) is a predictor of open communication in families [ 18 ].…”

Health professional and at‐risk BRCA young adult perspectives about information needs: What does Gen Y need to know?

“…Of 259 families contacted to participate as part of a broader study (Young et al, ), 22 families consented, which included 32 young adults aged 18–40 years (mean = 30.72). Participants were mostly Caucasian (78%), women (78%), not married (56%), and had a BRCA1/2 pathogenic variant (63%).…”

“…Young at‐risk adults in the current study sample were emerging (aged 18–25 years) or early (aged 26–40 years) adults who were either a BRCA1/2 carrier or the relative of a person who is a carrier or who had attended one of four regional or metropolitan genetic clinics in Australia 6 months to 20 years prior to study participation. Recruitment occurred as part of a larger study (Young et al, ). A study package was sent by mail to eligible participants who attended a collaborating genetic clinic.…”