Seeking Balance: Decision Support Needs of Women Without Cancer and a Deleterious BRCA1 or BRCA2 Mutation

Abstract

Recommendations for women with a deleterious BRCA1 or BRCA2 gene mutation include complex medical approaches related to cancer risk reduction and detection. Current science has not yet fully elucidated decision support needs that women face when living with medical consequences associated with known hereditary cancer risk. The purpose of this study was to describe health communication and decision support needs in healthy women with BRCA1/2 gene mutations. The original researchers completed an interpretive secondary qualitative data analysis of 23 phenomenological narratives collected between 2008 and 2010. The Ottawa Decision Support and Patient Centered Communication frameworks guided the study design and analysis. Women described a pattern wherein breast and ovarian cancer risk, health related recommendations and decisions, and personal values were prioritized over time based on life contexts. Knowing versus acting on cancer risk was not a static process but an ongoing balancing act of considering current and future personal and medical values, further compounded by the complexity of recommendations. Women shared stories of anticipatory, physical and psychosocial consequences of the decision making experience. The findings have potential to generate future research questions and guide intervention development. Importantly, findings indicate a need for ongoing, long-term, support from genetics professionals and decision support interventions, which challenges the current practice paradigm.

Involvement and Influence of Healthcare Providers, Family Members, and Other Mutation Carriers in the Cancer Risk Management Decision‐Making Process of BRCA1 and BRCA2 Mutation Carriers

“…Additional research is needed to determine if the timing and mode of communication of the risk discussions with the genetic counselor impact the outcomes studied here, but it may be beneficial for genetic counselors to follow up with patients who test positive for mutations at a later date to provide ongoing support. A study by Underhill and Crotser (2014) also concluded that long-term follow-up with genetics professionals may be beneficial for women after the identification of a BRCA mutation because they found that the risk management decision-making process is not static, but rather changes over time. Examples of service delivery models with genetic counseling follow up in multidisciplinary high-risk cancer clinics have been reported (Arden-Jones and Eeles 2004; Bancroft et al 2010; Engel et al 2012; Pichert et al 2010) and have been successful (Firth et al 2011; Pichert et al 2010).…”

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

“…Genetic-related health professionals can also offer an important perspective on the information needs of at-risk young adults. GHPs play an important role in providing information (Godino, Jackson, Turchetti, Hennessy, & Skirton, 2018), social support (Farrelly et al, 2013), and in-depth guidance about risk management decisions to this population (Underhill & Crotser, 2014) and are, therefore, likely to have informed insight. Currently, only one study reported on the opinions of BRCA1/2 high-risk young women and GHPs regarding their care planning and information needs (Evans et al, 2016), with a focus on reviewing the acceptability of a telephone intervention.…”

Predictors and interdependence of family support in a random sample of long‐term young breast cancer survivors and their biological relatives

“…Young women with a strong family history may have heightened perceptions of breast cancer risk, chronic depression, anxiety, and increased breast cancer worry . Family members are an important source of information about risk factors, genetics, and available screening and risk‐reducing strategies, especially for women from medically underserved communities . Multiple family members are likely to be involved, directly or indirectly, in appraisals regarding the magnitude of the health threat and the availability of coping resources.…”

“…[9][10][11] Family members are an important source of information about risk factors, genetics, and available screening and risk-reducing strategies, especially for women from medically underserved communities. 12 Multiple family members are likely to be involved, directly or indirectly, in appraisals regarding the magnitude of the health threat and the availability of coping resources. However, family members may perceive different levels of vulnerability and stigmatization associated with hereditary breast cancer, experience different levels of distress, and disagree about the extent of family involvement needed to reduce these stressors.…”