OBJECTIVE: Women who carry a genetic mutation for hereditary breast/ovarian cancer (BRCA1 or BRCA2) are at high risk to develop cancer. A positive genetic test result also has implications for a BRCA1/2 carrier's offspring who each have a 50% chance of inheriting the mutation. The dissemination of BRCA1/2-related information by carriers to offspring is not well understood. Our study examines the experiences of BRCA1/2 carriers in communicating genetic information to their offspring using a grounded theory approach. METHODS: Qualitative data were obtained from a multi-site group therapy trial for BRCA1/2 carriers with primary themes identified and coded using the constant comparison technique and verified by team members. RESULTS: Female participants had a mean age of 45.4 years, 83% were married, 71% had children (ranging from ages 2 to 30 years) and 45.9% had a prior diagnosis of cancer. Dissemination of genetic information by BRCA1/2 carriers to their offspring was described as a process involving several distinct phases with specific challenges within each phase. Several themes were identified including dilemmas on 'if' and 'when' to disclose to offspring, concerns should offspring receive a positive test result for BRCA1/2, dilemmas around feeling a need to protect versus the need to inform, and women as being the primary communicators. CONCLUSION: These findings have implications for genetic counselling as well as follow-up.
OBJECTIVE:Women who carry a genetic mutation for hereditary breast/ovarian cancer (BRCA1 or BRCA2) are at high risk to develop cancer. A positive genetic test result also has implications for a BRCA1/2 carrier's offspring who each have a 50% chance of inheriting the mutation. The dissemination of BRCA1/2-related information by carriers to offspring is not well understood. Our study examines the experiences of BRCA1/2 carriers in communicating genetic information to their offspring using a grounded theory approach. METHODS: Qualitative data were obtained from a multi-site group therapy trial for BRCA1/2 carriers with primary themes identified and coded using the constant comparison technique and verified by team members. RESULTS: Female participants had a mean age of 45.4 years, 83% were married, 71% had children (ranging from ages 2 to 30 years) and 45.9% had a prior diagnosis of cancer. Dissemination of genetic information by BRCA1/2 carriers to their offspring was described as a process involving several distinct phases with specific challenges within each phase. Several themes were identified including dilemmas on 'if' and 'when' to disclose to offspring, concerns should offspring receive a positive test result for BRCA1/2, dilemmas around feeling a need to protect versus the need to inform, and women as being the primary communicators. CONCLUSION: These findings have implications for genetic counselling as well as follow-up.
Authors: M J Esplen; J Wong; M Aronson; K Butler; H Rothenmund; K Semotiuk; L Madlensky; C Way; E Dicks; J Green; S Gallinger Journal: Clin Genet Date: 2014-10-28 Impact factor: 4.438
Authors: Angela R Bradbury; Linda Patrick-Miller; Brian L Egleston; Olufunmilayo I Olopade; Mary B Daly; Cynthia W Moore; Colleen B Sands; Helen Schmidheiser; Preethi K Kondamudi; Maia Feigon; Comfort N Ibe; Christopher K Daugherty Journal: Cancer Date: 2012-01-09 Impact factor: 6.860
Authors: Andrea Farkas Patenaude; Tiffani A DeMarco; Beth N Peshkin; Heiddis Valdimarsdottir; Judy E Garber; Katherine A Schneider; Larissa Hewitt; Jennifer Hamilton; Kenneth P Tercyak Journal: J Genet Couns Date: 2012-10-24 Impact factor: 2.537
Authors: Eveline M A Bleiker; Mary Jane Esplen; Bettina Meiser; Helle Vendel Petersen; Andrea Farkas Patenaude Journal: Fam Cancer Date: 2013-06 Impact factor: 2.375
Authors: Suzanne C O'Neill; Beth N Peshkin; George Luta; Anisha Abraham; Leslie R Walker; Kenneth P Tercyak Journal: Fam Cancer Date: 2009-04-24 Impact factor: 2.375