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Experience of Norwegian Female BRCA1 and BRCA2 Mutation-Carrying Participants in Educational Support Groups: a Qualitative Study

Abstract

Women identified as BRCA1 and BRCA2 mutation carriers are advised to manage their cancer risk through intensive screening programs and/or by undergoing risk-reducing surgery. The aim of this study was to explore and describe the experiences of female BRCA1/2 mutation carriers living with cancer risk and their experiences with participation in educational support groups (ESG). This qualitative study enrolled 17 (10 + 7) ESG participants in two different ESGs. The focus group interviews were performed immediately prior to and following two ESGs. The data were analyzed using John Knodel’s (1993) practical approach. Three main themes were identified; the women’s expectation and experience with ESG, the feeling of loneliness and isolation, and the feelings of living with “something else.” In this paper we have focused on one of the main themes- the women’s expectation and experience with ESG. This main theme presents four subthemes: the women’s need for unambiguous, clear and unified information from health professionals, the need for social support, the important role of the patient representative, and increased knowledge potentially raising concern. Participation in an ESG for women with BRCA1 and BRCA2 mutations can provide relevant information and support in the decision-making process related to risk-reducing surgery.

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Acknowledgments

We thank the research participants for sharing their time and insight during this study. This research was supported by practical support by the Department of Medical Genetics, University Hospital of North—Norway.

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Correspondence to Nina Strømsvik.

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Marion Myklebust, Eva Gjengedal and Nina Strømsvik declare that they have no conflict of interest.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study.

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Myklebust, M., Gjengedal, E. & Strømsvik, N. Experience of Norwegian Female BRCA1 and BRCA2 Mutation-Carrying Participants in Educational Support Groups: a Qualitative Study. J Genet Counsel 25, 1198–1206 (2016). https://doi.org/10.1007/s10897-016-9954-9

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Keywords

  • BRCA1
  • BRCA2
  • Hereditary cancers
  • Educational support group
  • Risk-reducing mastectomy
  • Risk-reducing oophorectomy