Caiata Zufferey, Maria and Pedrazzani, Carla Ambrogina and Aceti, Monica and Kaiser-Grolimund, A and Rudaz, M and Baroutsou, V and Kim, S and Burki, N and Chappuis, P and Graffeo-Galbiati, R and Monnerat, C and Rabaglio, M and Katapodi, M (2021) To say or not to say: A qualitative study on barriers and facilitators in family communication about genetic cancer risk. In: 10th Global Breast Cancer Conference, 8-10.4.2021, Seoul, South Korea.
Full text not available from this repository.Abstract
Background In Hereditary Breast and Ovarian Cancer (HBOC), open communication of genetic risk among families is essential to allow people to take decisions about genetic counselling and testing. According to Swiss and Korean laws, individuals identified with a pathogenic variant have the sole responsibility to share information about test results with at-risk relatives. Empirical evidence shows that up to 50% of blood relatives of known HBOC cases are unaware of the potential benefits of genetic testing, raising the question of barriers and facilitators in family communication about genetic cancer risk. Methods Interviews and focus groups in Switzerland and Korea (N= 58) are conducted with HBOC carriers to explore potential cultural interpretations, risk perceptions, lay theories and personal reasons (not) to communicate results with blood relatives. Interviews are video and/or audio recorded, transcribed and inductively analyzed by a team of multilingual, interdisciplinary qualitative researchers. Result While the importance of family communication is generally recognized by the participants, its modalities and timing are subject to interpretation. Elements such as gender, genetic literacy, health status, and life trajectory of the HBOC carrier and/or the blood relative, are analyzed and participate in both building and legitimizing the decision to communicate/not communicate. Conclusion This comprehensive, inductive, and sensitive study helps to better understand ways of thinking and acting to communicate genetic cancer risk. These broad, in-depth analyses will sustain the development of a tailored, interactive digital health platform designed to support HBOC carriers in managing communication among their at-risk relatives.
| Item Type: | Article in conference proceedings or Presentation at a conference (Poster) |
|---|---|
| Subjects: | Social studies |
| Department/unit: | Dipartimento economia aziendale, sanità e sociale > Centro competenze pratiche e politiche sanitarie |
| Depositing User: | Maria Caiata Zufferey |
| Date Deposited: | 23 Jun 2021 06:17 |
| Last Modified: | 17 Oct 2023 10:00 |
| URI: | http://repository.supsi.ch/id/eprint/12595 |
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