Navigating complex choices through legitimation: Narrative strategies in risk-reduction mastectomy decision-making among unaffected women with genetic risk for breast cancer in Switzerland
For unaffected women at high risk for developing breast cancer due to pathogenic variants in BRCA1 or BRCA2 (BRCA) genes, bilateral risk-reducing mastectomy (RRM) is an alternative to intensive surveillance. RRM reduces breast cancer risk but may generate additional health and psychosocial issues, m...
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Elsevier
2025-06-01
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| Series: | SSM: Qualitative Research in Health |
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| Online Access: | http://www.sciencedirect.com/science/article/pii/S2667321524001318 |
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| author | Maria Caiata-Zufferey Reka Schweighoffer Monica Aceti Carla Pedrazzani Maria C. Katapodi Souria Aissaoui Mekdes Alemu Murat Aykut Fulvia Brugnoletti Rachel Bunger Nicole Bürki Pierre O. Chappuis Muriel Fluri Rossella Graffeo Karl Heinimann Ashley Machen Christian Monnerat Olivia Pagani Manuela Rabaglio Eveline Schönau Simon Wieser Ursina Zürrer-Härdi |
| author_facet | Maria Caiata-Zufferey Reka Schweighoffer Monica Aceti Carla Pedrazzani Maria C. Katapodi Souria Aissaoui Mekdes Alemu Murat Aykut Fulvia Brugnoletti Rachel Bunger Nicole Bürki Pierre O. Chappuis Muriel Fluri Rossella Graffeo Karl Heinimann Ashley Machen Christian Monnerat Olivia Pagani Manuela Rabaglio Eveline Schönau Simon Wieser Ursina Zürrer-Härdi |
| author_sort | Maria Caiata-Zufferey |
| collection | DOAJ |
| description | For unaffected women at high risk for developing breast cancer due to pathogenic variants in BRCA1 or BRCA2 (BRCA) genes, bilateral risk-reducing mastectomy (RRM) is an alternative to intensive surveillance. RRM reduces breast cancer risk but may generate additional health and psychosocial issues, making the choice between surveillance and RRM complex and personal. This grounded theory study explores how unaffected women carrying BRCA pathogenic variants engage in a decision-making process leading to the choice of undergoing RRM. Narrative data were collected in Switzerland through biographical interviews with 38 unaffected women carrying BRCA pathogenic variants. Participants had either undergone RRM or were planning the surgery in the future. Findings indicate that the decision to undergo RRM was influenced by femininity and body image, current life engagements, anticipation of surgery risks and outcomes, perception and acceptance of cancer risk, surveillance experiences, attitudes of healthcare providers and family, and financial considerations. These factors interacted, creating contradictions that made decision-making challenging. To navigate this uncertainty, women progressively built their decision through a triple process of making sense: framing RRM as an obligated, empowering and mundane choice. This sense-making process is described as a process of legitimation, through which women decide to undergo RRM and integrate it into their life trajectory, ensuring its acceptability for themselves and their social circles. The discussion provides insights into the legitimation process as a heuristic tool for exploring crucial choices in uncertainty and offers implications for healthcare providers assisting individuals in complex decision-making processes. |
| format | Article |
| id | doaj-art-ed4df1e2b3f34a69b2c42fbc6fe9dcb0 |
| institution | Kabale University |
| issn | 2667-3215 |
| language | English |
| publishDate | 2025-06-01 |
| publisher | Elsevier |
| record_format | Article |
| series | SSM: Qualitative Research in Health |
| spelling | doaj-art-ed4df1e2b3f34a69b2c42fbc6fe9dcb02025-01-20T04:18:04ZengElsevierSSM: Qualitative Research in Health2667-32152025-06-017100522Navigating complex choices through legitimation: Narrative strategies in risk-reduction mastectomy decision-making among unaffected women with genetic risk for breast cancer in SwitzerlandMaria Caiata-Zufferey0Reka Schweighoffer1Monica Aceti2Carla Pedrazzani3Maria C. Katapodi4Souria Aissaoui5Mekdes Alemu6Murat Aykut7Fulvia Brugnoletti8Rachel Bunger9Nicole Bürki10Pierre O. Chappuis11Muriel Fluri12Rossella Graffeo13Karl Heinimann14Ashley Machen15Christian Monnerat16Olivia Pagani17Manuela Rabaglio18Eveline Schönau19Simon Wieser20Ursina Zürrer-Härdi21University of Applied Sciences and Arts of Southern Switzerland, Department of Business Economics, Health and Social Care, Manno, Switzerland; Corresponding author. Department of Business Economics, Health and Social Care, University of Applied Sciences and Arts of Southern Switzerland (SUPSI), Via Violino 11, Manno, 6928, Switzerland.University of Basel, Faculty of Medicine, Department of Clinical Research, Basel, SwitzerlandUniversity of Basel, Faculty of Medicine, Department of Clinical Research, Basel, Switzerland; Laboratory of Sport and Social Sciences, University of Strasbourg, Strasbourg, FranceUniversity of Applied Sciences and Arts of Southern Switzerland, Department of Business Economics, Health and Social Care, Manno, Switzerland; University of Basel, Faculty of Medicine, Department of Clinical Research, Basel, SwitzerlandUniversity of Basel, Faculty of Medicine, Department of Clinical Research, Basel, Switzerland; Corresponding author. Department of Clinical Research, University of Basel, Missionstrasse 64, Basel, 4055, Switzerland.Breast Center, Cantonal Hospital Fribourg, Fribourg, Switzerland; GENESUPPORT, The Breast Centre, Hirslanden Clinique de Grangettes, Geneva, SwitzerlandWomen's Clinic, University Hospital Basel, Basel, SwitzerlandDepartment of Medical Oncology, Cantonal Hospital Winterthur, Winterthur, SwitzerlandOncology Institute of Southern Switzerland, Ente Ospedaliero Cantonale (EOC), Bellinzona, SwitzerlandDepartment of Clinical Research, University of Basel, SwitzerlandWomen's Clinic, University Hospital Basel, Basel, SwitzerlandUnit of Oncogenetics, Division of Oncology, University Hospitals of Geneva, SwitzerlandDepartment of Medical Oncology, Inselspital, Bern University Hospital, SwitzerlandOncology Institute of Southern Switzerland, Ente Ospedaliero Cantonale (EOC), Bellinzona, SwitzerlandInstitute for Medical Genetics and Pathology, University Hospital Basel, Switzerland; Research Group Human Genomics, Department of Biomedicine, University of Basel, SwitzerlandBreast Center, Cantonal Hospital Fribourg, Fribourg, Switzerland; GENESUPPORT, The Breast Centre, Hirslanden Clinique de Grangettes, Geneva, SwitzerlandDepartment of Medical Oncology, Hospital of Jura, Délémont, SwitzerlandGeneva University Hospitals, Geneva, Switzerland; Lugano University, Lugano, SwitzerlandDepartment of Medical Oncology, Inselspital, Bern University Hospital, SwitzerlandWomen's Clinic, University Hospital Basel, Basel, SwitzerlandZHAW School of Management and Law, Winterthur Institute of Health Economics, SwitzerlandDepartment of Medical Oncology, Inselspital, Bern University Hospital, SwitzerlandFor unaffected women at high risk for developing breast cancer due to pathogenic variants in BRCA1 or BRCA2 (BRCA) genes, bilateral risk-reducing mastectomy (RRM) is an alternative to intensive surveillance. RRM reduces breast cancer risk but may generate additional health and psychosocial issues, making the choice between surveillance and RRM complex and personal. This grounded theory study explores how unaffected women carrying BRCA pathogenic variants engage in a decision-making process leading to the choice of undergoing RRM. Narrative data were collected in Switzerland through biographical interviews with 38 unaffected women carrying BRCA pathogenic variants. Participants had either undergone RRM or were planning the surgery in the future. Findings indicate that the decision to undergo RRM was influenced by femininity and body image, current life engagements, anticipation of surgery risks and outcomes, perception and acceptance of cancer risk, surveillance experiences, attitudes of healthcare providers and family, and financial considerations. These factors interacted, creating contradictions that made decision-making challenging. To navigate this uncertainty, women progressively built their decision through a triple process of making sense: framing RRM as an obligated, empowering and mundane choice. This sense-making process is described as a process of legitimation, through which women decide to undergo RRM and integrate it into their life trajectory, ensuring its acceptability for themselves and their social circles. The discussion provides insights into the legitimation process as a heuristic tool for exploring crucial choices in uncertainty and offers implications for healthcare providers assisting individuals in complex decision-making processes.http://www.sciencedirect.com/science/article/pii/S2667321524001318BRCA1 and BRCA2CASCADE consortiumProphylactic surgeryIntensive surveillanceDecision-makingLegitimation |
| spellingShingle | Maria Caiata-Zufferey Reka Schweighoffer Monica Aceti Carla Pedrazzani Maria C. Katapodi Souria Aissaoui Mekdes Alemu Murat Aykut Fulvia Brugnoletti Rachel Bunger Nicole Bürki Pierre O. Chappuis Muriel Fluri Rossella Graffeo Karl Heinimann Ashley Machen Christian Monnerat Olivia Pagani Manuela Rabaglio Eveline Schönau Simon Wieser Ursina Zürrer-Härdi Navigating complex choices through legitimation: Narrative strategies in risk-reduction mastectomy decision-making among unaffected women with genetic risk for breast cancer in Switzerland SSM: Qualitative Research in Health BRCA1 and BRCA2 CASCADE consortium Prophylactic surgery Intensive surveillance Decision-making Legitimation |
| title | Navigating complex choices through legitimation: Narrative strategies in risk-reduction mastectomy decision-making among unaffected women with genetic risk for breast cancer in Switzerland |
| title_full | Navigating complex choices through legitimation: Narrative strategies in risk-reduction mastectomy decision-making among unaffected women with genetic risk for breast cancer in Switzerland |
| title_fullStr | Navigating complex choices through legitimation: Narrative strategies in risk-reduction mastectomy decision-making among unaffected women with genetic risk for breast cancer in Switzerland |
| title_full_unstemmed | Navigating complex choices through legitimation: Narrative strategies in risk-reduction mastectomy decision-making among unaffected women with genetic risk for breast cancer in Switzerland |
| title_short | Navigating complex choices through legitimation: Narrative strategies in risk-reduction mastectomy decision-making among unaffected women with genetic risk for breast cancer in Switzerland |
| title_sort | navigating complex choices through legitimation narrative strategies in risk reduction mastectomy decision making among unaffected women with genetic risk for breast cancer in switzerland |
| topic | BRCA1 and BRCA2 CASCADE consortium Prophylactic surgery Intensive surveillance Decision-making Legitimation |
| url | http://www.sciencedirect.com/science/article/pii/S2667321524001318 |
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