Evaluation of the Support Provided to Male BRCA1/2 Mutation Carriers: Are Their Needs Being Met or Can Genetic Counselors Do Better?

Abstract

Inherited mutations in the BRCA1 and BRCA2 genes are associated with hereditary breast and ovarian cancer syndrome (HBOC), a cancer susceptibility condition which significantly increases a woman’s risk for breast and ovarian cancer compared to the general population. Hence, HBOC is primarily associated with women while male carriers of a BRCA1 or BRCA2 mutation have a significantly increased risk for a variety of cancers as well. Research and efforts to support individuals affected with HBOC have been heavily focused on women, and little acknowledgment is given to the cancer risks and needs of male carriers. The purpose of this study was to get a better understanding of what resources and supports genetic counselors should offer to male BRCA mutation carriers, who are also fathers, to best serve their needs. Seven men who are a BRCA1 or BRCA2 mutation carrier and have biological children were recruited from an online support group and an online foundation to participate in a semi-structured phone interview. The major topics addressed included what was provided by the genetic counselor, what their experience was with supports and resources, their concerns, and how fatherhood impacted their experience with being a carrier. Thematic analysis of the interview transcripts was performed in ATLAS.ti (v.8) and seven themes were identified: (1) an overall positive impression of the genetic counseling session; interest in (2) more medical management options, (3) informational resources, and (4) support groups and opportunities to connect with others; (5) a need for recognition and awareness of male BRCA mutation carriers, (6) concern for children, and (7) normalization. This study showed that male BRCA mutation carriers have similar needs for informational and emotional supports and resources as women affected with HBOC.