title: Identifying Needs: a Qualitative Study of women's Experiences Regarding Rapid Genetic Testing for Hereditary Breast and Ovarian Cancer in the DNA BONus Study.
abstract: Genetic testing for hereditary breast and ovarian cancer is increasingly being offered in newly diagnosed breast and ovarian cancer patients. This genetic information may influence treatment decisions. However, there are some concerns that genetic testing offered in an already vulnerable situation might be an extra burden to these women. The aim of this study was to explore the experiences of women who had been offered and accepted genetic testing when newly diagnosed with breast or ovarian cancer. Four semi-structured focus-group interviews were conducted with 17 women recruited from a Norwegian multicenter study. The material was condensed, and conventional qualitative analysis was used to identify patterns in the participants' descriptions. Three core themes were identified: 1) being "beside oneself" 2) altruism and ethical dilemmas 3) the need for support and counselling to assist the decision process. The present study indicates that women who are offered genetic testing when newly diagnosed with breast or ovarian cancer want a consultation with a health professional. Personalized support and counselling might empower women to improve their ability to manage and comprehend this overwhelming situation, and find meaning in this experience.
authors.affiliation: Western Norway Familial Cancer Center, Haukeland University Hospital, Haukelandsveien 22, P.O. Box 1400, N-5021, Bergen, Norway. mirjam.tonheim.augestad@helse-bergen.no.|Center for Medical Genetics and Molecular Medicine, Haukeland University Hospital, Bergen, Norway. mirjam.tonheim.augestad@helse-bergen.no.
authors.forename: Mirjam Tonheim
authors.initials: MT
authors.lastname: Augestad
authors.affiliation: Western Norway Familial Cancer Center, Haukeland University Hospital, Haukelandsveien 22, P.O. Box 1400, N-5021, Bergen, Norway.|Center for Medical Genetics and Molecular Medicine, Haukeland University Hospital, Bergen, Norway.
authors.forename: Hildegunn
authors.initials: H
authors.lastname: Høberg-Vetti
authors.affiliation: Western Norway Familial Cancer Center, Haukeland University Hospital, Haukelandsveien 22, P.O. Box 1400, N-5021, Bergen, Norway.|Center for Medical Genetics and Molecular Medicine, Haukeland University Hospital, Bergen, Norway.|Department of Clinical Science, University of Bergen, Bergen, Norway.
authors.forename: Cathrine
authors.initials: C
authors.lastname: Bjorvatn
authors.affiliation: Department of Clinical Science, University of Bergen, Bergen, Norway.|Department of Obstetrics and Gynecology, Haukeland University Hospital, Bergen, Norway.
authors.forename: Ragnhild Johanne Tveit
authors.initials: RJ
authors.lastname: Sekse
mesh_terms: D000328:Adult; D000368:Aged; D000533:Altruism; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D005817:Genetic Counseling / Q000941:ethics / Q000523:psychology*; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing; D061325:Hereditary Breast and Ovarian Cancer Syndrome / Q000235:genetics / Q000523:psychology*; D006801:Humans; D008875:Middle Aged; D009154:Mutation; D009664:Norway; D036301:Qualitative Research; D012944:Social Support
keywords: BRCA 1/2; Genetic information; Newly-diagnosed breast and ovarian cancer; Personalized support and counselling; Rapid genetic testing