Coping response and family communication of cancer risk in men harboring aBRCAmutation: A mixed methods study

Abstract

Objective: Providing genetic counseling and genetic testing to at-risk blood relatives (cascade screening) is important for improving BRCA cancer outcomes. Intrafamilial communication of risk is critical for cascade screening efforts yet relatively little is known about men's role in communicating BRCA risk. We sought to examine men's coping response to their BRCA status and intra-familial communication of risk to inform the development of tailored interventions that could promote cascade screening. Methods:We employed a sequential mixed-methods design. First, we measured coping response (quantitative) using the Multidimensional Impact of Cancer Risk Assessment (MICRA). MICRA scores were compared between BRCA+ men, BRCA− men and BRCA+ women. Subsequently, we used template analysis to analyze qualitative interviews exploring coping and intra-familial communication of risk. The Theory of Planned Behavior (TPB) served as a guiding framework for identifying intervention targets.Results: BRCA+ men (n = 36) had significantly higher levels of distress (p < 0.001), uncertainty (p < 0.001) and negative experiences (p < 0.05) compared to BRCA− male counterparts (n = 23). BRCA+ men had significantly lower distress (p < 0.001) and uncertainty (p < 0.001) than BRCA+ women (n = 406). Qualitative analysis of indepth interviews with BRCA+ men (n = 35) identified promoters and barriers to active coping response and intra-familial communication of risk. Mapping results onto the TPB identified targets for tailoring person-centered approaches for men addressing beliefs/attitude, subjective norms, and perceived behavioral control. Conclusions: Men and women appear to have different coping responses to learning their BRCA status. Developing tailored (sex-based), theory informed interventions may help promote intra-familial communication of BRCA risk and support cascade screening.

Exploring Rare Disease Patient Attitudes and Beliefs regarding Genetic Testing: Implications for Person-Centered Care

“…Altruism was also a factor that motivated family discussions. These observations are similar to qualitative findings in families with HBOC [ 30 , 31 ]—wherein some individuals feel obligated to communicate risk within the family and become so-called “ BRCA warriors”, informing at-risk blood relatives. Importantly, feelings of guilt often accompany a genetic diagnosis [ 29 , 32 ].…”

“…Importantly, feelings of guilt often accompany a genetic diagnosis [ 29 , 32 ]. The guilt and shame noted by participants mirrors sentiments expressed in HBOC families and poses barriers for intrafamilial communication [ 29 , 30 , 31 , 33 ]. Focus-group discussions revealed conflicting feelings as many were altruistically motivated to participate in genetic research and help investigators/clinicians—yet participants were disappointed by some providers being unaware/not offering genetic testing.…”

“…In the present study, we reported frequencies of themes/sub-themes to explore patient priorities (i.e., the most frequently arising codes) and inform the development of interventions to address the unmet patient needs. While not a traditional approach to qualitative inquiry, reporting frequencies in qualitative research has been employed to guide intervention development [ 31 ]. There is a possible bias of ascertainment in the study.…”

The Communication Chain of Genetic Risk: Analyses of Narrative Data Exploring Proband–Provider and Proband–Family Communication in Hereditary Breast and Ovarian Cancer

“…Extensive literature indicates that communication of genetic risk to relatives is a difficult and complex process, compounded by a wide variety of interconnected factors that can act as facilitators or barriers. These characteristics are related to the individual (i.e., feelings about informing relatives and perceived responsibility to tell; perceived risk and disease severity; level of psychological adaptation and perceived relevance of the information; motivation to share; genetic literacy), the interpersonal dynamic (i.e., emotional closeness and frequency of interactions), the family (i.e., proximity and quality of the relationship; family forms and cohesiveness; past experience with cancer; family rules and patterns), and the community characteristics (i.e., cultural context; gender) [ 6 , 7 , 8 , 9 , 10 , 11 , 12 , 13 , 14 , 15 , 16 , 17 , 18 ]. Probands usually acknowledge their responsibility to inform relatives, but this responsibility may be experienced as a dilemma with sentiments of guilt, fear, and frustration, adding to the cancer diagnosis-associated burden [ 19 , 20 ].…”

Racial and Ethnic Disparities in Genomic Healthcare Utilization, Patient Activation, and Intrafamilial Communication of Risk among Females Tested for BRCA Variants: A Mixed Methods Study

“…A cancer diagnosis and undergoing cancer treatment are associated with significant psychosocial distress [49]. Similarly, learning BRCA+ status is often a watershed moment accompanied by significant uncertainty and emotional distress [14]. We used qualitative interviews to explore the inverse relationship between resilience and intrafamilial communication of risk.…”