Sue Kim

The Process of Cancer Prevention Behaviors in Individuals at High Risk of Hereditary Cancer: A Grounded Theory Study

ABSTRACT Objective This study aimed to explore the process of cancer prevention behaviors in individuals at high risk of hereditary cancer in Korea. Methods We included 10 adults with pathogenic variants in genes related to hereditary breast and ovarian cancer syndrome, hereditary non‐polyposis colorectal cancer, or familial adenomatous polyposis, but who had never been diagnosed with cancer. Data were collected through in‐depth interviews at the cancer prevention center of a tertiary hospital in Korea. Data were analyzed using the grounded theory method proposed by Corbin and Strauss. Results 50 concepts, 20 subcategories, and 10 categories were identified. The categories were as follows: (1) identifying genetic vulnerability, (2) facing the risk of cancer, (3) negative emotions caused by the cancer risk–like destiny, (4) support from medical staff and providing information for hereditary cancer, (5) expanding support for medical expenses at the national level, (6) Exploring information on hereditary cancer and cancer prevention, (7) cancer screening for early detection, (8) lifestyle for cancer prevention, (9) risk‐reduction surgery to relieve cancer fear, and (10) living with fear and worry. The core category for the process of cancer prevention behavior in individuals at high risk of hereditary cancer was “managing cancer fear”. Conclusion Person‐centered counseling and educational interventions to support cancer prevention in individuals at high risk of hereditary cancer should be developed and should include assessing psychosocial symptoms, including fear of cancer, and managing it. Making an appropriate system for medical expenses should be considered.

Decision-making process for risk-reducing salpingo-oophorectomy among Korean women with hereditary breast cancer: A grounded theory study

Psychosocial barriers and facilitators for cascade genetic testing in hereditary breast and ovarian cancer: a scoping review

Despite increased awareness and availability of genetic testing for hereditary breast and ovarian cancer (HBOC) syndrome for over 20 years, there is still significant underuse of cascade genetic testing among at-risk relatives. This scoping review synthesized evidence regarding psychosocial barriers and facilitators of family communication and/or uptake of cascade genetic testing in relatives from HBOC families. Search terms included 'hereditary breast and ovarian cancer' and 'cascade genetic testing' for studies published from 2012-2022. Through searching common databases, and manual search of references, 480 studies were identified after excluding duplications. Each article was reviewed by two researchers independently and 20 studies were included in the final analysis. CASP, RoBANS 2.0, RoB 2.0, and MMAT were used to assess the quality of included studies. A convergent data synthesis method was used to integrate evidence from quantitative and narrative data into categories and subcategories. Evidence points to 3 categories and 12 subcategories of psychosocial barriers and facilitators for cascade testing: (1) facilitators (belief in health protection and prevention; family closeness; decisional empowerment; family support, sense of responsibility; self-efficacy; supportive health professionals); (2) bidirectional concepts (information; perception of genetic/cancer consequences; negative emotions and attitude); and (3) barriers (negative reactions from family and negative family dynamics). Healthcare providers need to systematically evaluate these psychosocial factors, strengthen facilitators and alleviate barriers to promote informed decision-making for communication of genetic test results and uptake of genetic testing. Bidirectional factors merit special consideration and tailored approaches, as they can potentially have a positive or negative influence on family communication and uptake of genetic testing.

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.