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The communication chain of genetic risk: analyses of narrative data exploring proband-provider and proband-family communication in hereditary breast and ovarian cancer
JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift)
 
ID 4651791
Author(s) Pedrazzani, C.; Aceti, M.; Schweighoffer, R.; Kaiser-Grolimund, A.; Bürki, N.; Chappuis, P. O.; Graffeo, R.; Monnerat, C.; Pagani, O.; Rabaglio, M.; Katapodi, M. C.; Caiata-Zufferey, M.
Author(s) at UniBasel Kaiser-Grolimund, Andrea
Year 2022
Title The communication chain of genetic risk: analyses of narrative data exploring proband-provider and proband-family communication in hereditary breast and ovarian cancer
Journal J Pers Med
Volume 12
Number 8
Pages / Article-Number 1249
Keywords Hboc; cascade genetic screening; counselling; genetic risk; grounded theory; intra-familial communication; proband-mediated communication; tier 1 genetic condition
Abstract Low uptake of genetic services among members of families with hereditary breast and ovarian cancer (HBOC) suggests limitations of proband-mediated communication of genetic risk. This study explored how genetic information proceeds from healthcare providers to probands and from probands to relatives, from the probands' perspectives. Using a grounded-theory approach, we analyzed narrative data collected with individual interviews and focus groups from a sample of 48 women identified as carriers of HBOC-associated pathogenic variants from three linguistic regions of Switzerland. The findings describe the "communication chain", confirming the difficulties of proband-mediated communication. Provider-proband communication is impacted by a three-level complexity in the way information about family communication is approached by providers, received by probands, and followed-up by the healthcare system. Probands' decisions regarding disclosure of genetic risk are governed by dynamic and often contradictory logics of action, interconnected with individual and family characteristics, eventually compelling probands to engage in an arbitrating process. The findings highlight the relevance of probands' involvement in the communication of genetic risk to relatives, suggesting the need to support them in navigating the complexity of family communication rather than replacing them in this process. Concrete actions at the clinical and health system levels are needed to improve proband-mediated communication.
ISSN/ISBN 2075-4426 (Print)2075-4426 (Linking)
URL https://doi.org/10.3390/jpm12081249
edoc-URL https://edoc.unibas.ch/90737/
Full Text on edoc Available
Digital Object Identifier DOI 10.3390/jpm12081249
PubMed ID http://www.ncbi.nlm.nih.gov/pubmed/36013197
ISI-Number WOS:000845767800001
Document type (ISI) Journal Article
 
   

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