Abstract
Pathogenic germline variants in Breast Cancer 1/2 (BRCA) genes confer increased cancer risk. Understanding BRCA status/risk can enable family cascade screening and improve cancer outcomes. However, more than half of the families do not communicate family cancer history/BRCA status, and cancer outcomes differ according to parent of origin (i.e., maternally vs. paternally inherited pathogenic variant). We aimed to explore communication patterns around family cancer history/BRCA risk according to parent of origin. We analyzed qualitative interviews (n = 97) using template analysis and employed the Theory of Planned Behavior (TPB) to identify interventions to improve communication. Interviews revealed sub-codes of ‘male stoicism and ‘paternal guilt’ that impede family communication (template code: gender scripting). Conversely, ‘fatherly protection’ and ‘female camaraderie’ promote communication of risk. The template code ‘dysfunctional family communication’ was contextualized by several sub-codes (‘harmful negligence’, ‘intra-family ignorance’ and ‘active withdrawal of support’) emerging from interview data. Sub-codes ‘medical misconceptions’ and ‘medical minimizing’ deepened our understanding of the template code ‘medical biases’. Importantly, sub-codes of ‘informed physicians’ and ‘trust in healthcare’ mitigated bias. Mapping findings to the TPB identified variables to tailor interventions aimed at enhancing family communication of risk and promoting cascade screening. In conclusion, these data provide empirical evidence of the human factors impeding communication of family BRCA risk. Tailored, theory-informed interventions merit consideration for overcoming blocked communication and improving cascade screening uptake.
Highlights
Breast cancer is the most common female cancer diagnosis and approximately 2.1 million women were newly diagnosed with breast cancer in 2018 [1]
Mapping findings to the Theory of Planned Behavior (TPB) identified variables to tailor interventions aimed at enhancing family communication of risk and promoting cascade screening
Qualitative interviews with 97 women identify a matrix of parent of origin and gender role influences on family communication of Breast Cancer 1/2 (BRCA) risk influencing cascade screening
Summary
Breast cancer is the most common female cancer diagnosis and approximately 2.1 million women were newly diagnosed with breast cancer in 2018 [1]. 10% of all breast cancers are inherited and associated with family history [2]. Women harboring pathogenic variants in BRCA1 or BRCA2 have increased risk for developing breast cancer (72% and 69% respectively by age 80) [3]. Detection of BRCA pathogenic variants has significant relevance for medical management as earlier detection and risk reducing strategies (i.e., hormonal treatment, risk-reducing surgery) can improve outcomes. The United States Preventive Services Task Force has recently updated evidence-based recommendations for risk assessment, genetic counseling and genetic testing. The U.S Centers for Disease Control and Prevention (CDC) recognizes hereditary breast and ovarian cancer (HBOC) syndrome as a Tier 1 condition meaning that evidence-based guidelines and recommendations support a significant potential for positive public health impact. The National Cancer Institute, the Cancer Moonshot Blue Ribbon Panel and the Genomics Population
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