Article thumbnail

Cancer worry among Norwegian male BRCA1/2 mutation carriers

By Nina Strømsvik, Målfrid Råheim and Eva Gjengedal

Abstract

This qualitative study explored the experiences of Norwegian men after being identified as BRCA 1/2 mutation-positive. Only limited knowledge is available on this topic; therefore, the aim of this study was to gain a deeper insight from the men’s own perspectives. Data were collected from in-depth interviews with 15 men and seven of their partners. The participants described fear of cancer development, and two main narrative patterns were identified: fear for their own health, including fear of developing cancer, and negative feelings about responsibility for others’ health. The men expressed fear of developing cancer themselves and described a need for genetic risk information. They were also deeply concerned about how the mutation might affect their children and other relatives. There is a need for guidelines concerning genetic risk information and follow-up programs for male BRCA 1/2 mutation carriers. This study adds valuable contextual insights into their experiences of living with fear of cancer

Topics: Article
Publisher: Springer Netherlands
OAI identifier: oai:pubmedcentral.nih.gov:3175350
Provided by: PubMed Central

To submit an update or takedown request for this paper, please submit an Update/Correction/Removal Request.

Suggested articles

Citations

  1. A et al (2003) Predictive testing for BRCA1 and 2 mutations: a male contribution.
  2. (2003). A matter of heart: the general practitioner consultation in an evidence-based world.
  3. (2007). Cancer risks among BRCA1 and BRCA2 mutation carriers.
  4. (2008). Counseling for male BRCA mutation carriers: a review.
  5. (2006). Diagnostikk og behandling av arvelig bryst-og eggstokkreft. Konsensusforslag NGAK, NBCG, NFGO verdr Tiltak ved arvelig bryst-og eggstokkreft 602 N. Strømsvik et al.
  6. Eeles R et al (2005) Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: patterns, priorities and problems.
  7. Eeles R et al (2005) Men’s decision-making about predictive BRCA1/2 testing: the role of family.
  8. Eeles R et al (2006) Guilt, blame and responsibility: men’s understanding of their role in the transmission of BRCA1/2 mutations within their family.
  9. (1998). Embodied risk: my body, myself?
  10. (1997). Encompassing experience: meanings and methods in health psychology.
  11. (2004). Ethical dilemmas arising from implementation of the European guidelines on cardiovascular disease prevention in clinical practice. A descriptive epidemiological study.
  12. (2000). Evaluation of the needs of male carriers of mutations in BRCA1 or BRCA2 who have undergone genetic counseling.
  13. (2001). Experiences of genetic risk: disclosure and the gendering of responsibility.
  14. (2008). Factors determining dissemination of results and uptake of genetic testing in familieswith knownBRCA1/2 mutations.GenetTest 12(1):81–91
  15. (2007). Familial effects of BRCA1 genetic mutation testing: changes in perceived family functioning.
  16. (2002). Health behavior and health education theory, research, and practice. 3rd edn. JosseyBass,
  17. (2006). Hereditary breast and ovarian cancer: review and future perspectives.
  18. (1994). Interpretive phenomenology. Sage Publication,
  19. (1996). Males at-risk for the BRCA1 gene, the psychological impact.
  20. (1998). Men in breast cancer families: a preliminary qualitative study of awareness and experience.
  21. (2009). Men in the women’s world of hereditary breast and ovarian cancer–a systematic review.
  22. (1993). Narrative analysis.
  23. (1995). Narrative configuration in qualitative analysis. In: Hatch JA, Wisniewski R (eds) Life history and narrative.
  24. (1985). Phenomeology and psychological research.
  25. (2008). Prostate cancer in male BRCA1 and BRCA2 mutation carriers has a more aggressive phenotype.
  26. (2008). Rapid progression of prostate cancer in men with a BRCA2 mutation.
  27. (1986). Research interviewing. Context and narrative.
  28. (2005). Salutogenesis.
  29. (2010). Stigmatization and male identity: Norwegian males’ experience after identification as BRCA1/2 mutation carriers.
  30. (2010). Targeted prostate cancer screening in men with mutations in BRCA1 and BRCA2 detects aggressive prostate cancer: preliminary analysis of the results of the IMPACT study.
  31. (2009). The descriptive phenomenological method in psychology: a modified Husserlian approach.
  32. (2007). The emotional effects of genetic diseases: implications for clinical genetics.
  33. (1987). The mystery of health: how people manage stress and stay well. Jossey bass,
  34. Trijsburg RW et al (2001) Men at risk of being a mutation carrier for hereditary breast/ovarian cancer: an exploration of attitudes and psychological functioning during genetic testing.
  35. (2010). Women’s perceptionsofthepersonalandfamilyimpactofgeneticcancerrisk assessment: focus group findings.