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

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dc.contributor.advisor Chan-Smutko, Gayun en_US
dc.contributor.author Nassar, Anna-Lena
dc.date.accessioned 2018-05-14T18:23:28Z
dc.date.available 2018-05-14T18:23:28Z
dc.date.issued 2018
dc.identifier.uri http://hdl.handle.net/10192/35689
dc.description.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. en_US
dc.description.sponsorship Brandeis University, Graduate School of Arts and Sciences en_US
dc.format.mimetype application/pdf en_US
dc.language English en_US
dc.language.iso eng en_US
dc.publisher Brandeis University en_US
dc.rights Copyright by Anna-Lena Nassar 2018 en_US
dc.subject Support en_US
dc.subject Needs en_US
dc.subject Men en_US
dc.subject HBOC en_US
dc.subject BRCA en_US
dc.subject Mutation en_US
dc.subject Male Carriers en_US
dc.subject Resources en_US
dc.subject Children en_US
dc.subject Fathers en_US
dc.subject Genetic Counseling en_US
dc.title Evaluation of the Support Provided to Male BRCA1/2 Mutation Carriers: Are Their Needs Being Met or Can Genetic Counselors Do Better? en_US
dc.type Thesis en_US
dc.contributor.department Graduate Program in Genetic Counseling en_US
dc.degree.name MS en_US
dc.degree.level Masters en_US
dc.degree.discipline Genetic Counseling en_US
dc.degree.grantor Brandeis University, Graduate School of Arts and Sciences en_US


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