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Stigmatization and Male Identity: Norwegian Males’ Experience after Identification as BRCA1/2 Mutation Carriers

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Journal of Genetic Counseling

Abstract

In families with hereditary breast and ovarian cancer, there is limited knowledge about the reactions of BRCA1/2 mutation positive males. In the present qualitative study, fifteen BRCA1/2 mutation positive men in Norway participated in two successive, in-depth interviews. Seven female partners participated in the second interview. The men reported strong emotional reactions to their positive test results, and they expressed a desire to keep the genetic information private. They considered discussing their test results or health related information with other males as difficult, and they perceived females as their sources of social and emotional support. Interestingly, the second interview revealed important information not communicated during the first interview. The findings of this study contribute to the discussion of whether men who test positive for a BRCA1/2 mutation should receive tailored genetic counseling sessions. Health care providers should be aware of psychological vulnerability in these men, likely stemming from fewer emotional supports in their social networks.

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Authors and Affiliations

  1. Western Norway Familial Cancer Center, Haukeland University Hospital, N-5021, Bergen, Norway

    Nina Strømsvik & Lars Fredrik Engebretsen

  2. Department of Public Health and Primary Health Care, University of Bergen, Bergen, Norway

    Nina Strømsvik, Målfrid Råheim, Nina Øyen & Eva Gjengedal

  3. Department of Medical Genetics, University Hospital of North-Norway, Tromsø, Norway

    Nina Strømsvik

  4. Faculty of Health and Social Care, Molde University College, Molde, Norway

    Eva Gjengedal

Authors
  1. Nina Strømsvik
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  2. Målfrid Råheim
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  3. Nina Øyen
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  4. Lars Fredrik Engebretsen
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  5. Eva Gjengedal
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Corresponding author

Correspondence to Nina Strømsvik.

Appendix

Appendix

Interview Guide

  • How the genetic testing was initiated in the family

  • Experience with the genetic counseling and testing process

  • Experience with cancer in their family

  • Feelings of being identified as mutation positive

  • Thoughts about cancer risk

  • Family communication and family dynamics

  • Male identity

  • Thoughts about future follow-up programs

The participants were also encouraged to expound upon any other issues important to them.

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Strømsvik, N., Råheim, M., Øyen, N. et al. Stigmatization and Male Identity: Norwegian Males’ Experience after Identification as BRCA1/2 Mutation Carriers. J Genet Counsel 19, 360–370 (2010). https://doi.org/10.1007/s10897-010-9293-1

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  • DOI: https://doi.org/10.1007/s10897-010-9293-1

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