Family Caring, Culture, and Communication: Barriers to BRCA-Related Risk Disclosure in Korea-A Qualitative Study

Despite the importance of disclosing a pathogenic/likely pathogenic (P/LP) variant related to hereditary cancer, fewer than half of index cases share their genetic test results with at-risk, biological relatives. Given this missed opportunity for cancer prevention, this study explored the barriers to family communication in Korea, from the perspective of women with hereditary breast and ovarian cancer syndrome.

In-depth interviews were conducted with 22 women (17 affected, 5 unaffected) carrying P/LP variants in one the BRCA genes in Korea. Individual face-to-face and small-group interviews were conducted between August 2020 and November 2021. Narrative data were analyzed using inductive content analysis to identify how participants experienced and interpreted barriers to family communication.

Participants expressed a need for more information and guidance before initiating conversations with relatives. Emotional burden was especially heightened for affected carriers, who had to manage their own cancer diagnosis while assuming the responsibility of informing relatives. Four key barriers to family communication were identified: (1) Blurry understanding of BRCA in social and health context; (2) emotional turmoil in clinical communication; (3) disrupted expectations in family risk communication; and (4) culturally shaped disclosure decisions.

Women with P/LP variants in BRCA genes face multifaceted barriers in communicating hereditary cancer risk to their relatives. Disclosure should be framed not as delivering bad news but as conveying actionable and preventive information. Culturally sensitive, stepwise communication support, delivered consistently by healthcare professionals, is needed to help carriers navigate this process and avoid isolation and emotional distress.

Nurses are critical mediators in the physician-patient-family nexus, playing a role that extends beyond clinical support to include emotional guidance, risk communication, and cultural sensitivity in facilitating family communication.