Marleah Dean1, Ann L Tezak2, Sabrina Johnson3, Joy K Pierce4, Anne Weidner2, Kate Clouse5, Tuya Pal2, Deborah Cragun6. 1. Department of Communication, University of South Florida, Tampa, FL, USA. Electronic address: marleahdeank@usf.edu. 2. Vanderbilt-Ingram Cancer Center in the Department of Medicine, Division of Genetic Medicine, Vanderbilt University Medical Center, Nashville, TN, USA. 3. Department of Communication, University of South Florida, Tampa, FL, USA. 4. Cleveland Clinic, Indian River Hospital, Vero Beach, FL, USA. 5. Department of Nursing, Vanderbilt University, Nashville, TN, USA. 6. College of Public Health, University of South Florida, Tampa, FL, USA.
Abstract
OBJECTIVE: This study explored motivators and challenges/barriers to sharing personal genetic test results (GTR) with family members (FM). METHODS: Semi-structured, in-depth interviews were conducted with 62 women who had a pathogenic or likely pathogenic (P/LP) variant in aBRCA, PALB2, CHEK2, or ATM gene. Selective qualitative data analysis focused on eliciting motivators and challenges/barriers identified by participants when sharing their GTR with FM. RESULTS: Motivators to sharing personal GTR with FM included: health protection and prevention; moral obligation; decisional empowerment; familial ties; written resources; and contextualization for a familial cause for cancer. Challenges/barriers to family sharing included: concern for FM reactions; complexities of information; lack of closeness; perceived relevance; and emotional impact. CONCLUSIONS: All motivators and challenges/barriers were identified across BRCA and non-BRCA carriers, demonstrating commonalities in family sharing of GTR among high- to moderate-penetrance hereditary BC (breast cancer) genes. Despite challenges/barriers, participants disclosed their GTR with most close FM, yet restrictions in communication and/or strain on the timing, manner of disclosing, and strategies used varied across certain FM. PRACTICE IMPLICATIONS: These findings offer healthcare providers and researchers preliminary practical implications for broadly improving family sharing interventions across P/LP variants in BC risk genes by demonstrating important elements to include in family sharing letters.
OBJECTIVE: This study explored motivators and challenges/barriers to sharing personal genetic test results (GTR) with family members (FM). METHODS: Semi-structured, in-depth interviews were conducted with 62 women who had a pathogenic or likely pathogenic (P/LP) variant in aBRCA, PALB2, CHEK2, or ATM gene. Selective qualitative data analysis focused on eliciting motivators and challenges/barriers identified by participants when sharing their GTR with FM. RESULTS: Motivators to sharing personal GTR with FM included: health protection and prevention; moral obligation; decisional empowerment; familial ties; written resources; and contextualization for a familial cause for cancer. Challenges/barriers to family sharing included: concern for FM reactions; complexities of information; lack of closeness; perceived relevance; and emotional impact. CONCLUSIONS: All motivators and challenges/barriers were identified across BRCA and non-BRCA carriers, demonstrating commonalities in family sharing of GTR among high- to moderate-penetrance hereditary BC (breast cancer) genes. Despite challenges/barriers, participants disclosed their GTR with most close FM, yet restrictions in communication and/or strain on the timing, manner of disclosing, and strategies used varied across certain FM. PRACTICE IMPLICATIONS: These findings offer healthcare providers and researchers preliminary practical implications for broadly improving family sharing interventions across P/LP variants in BC risk genes by demonstrating important elements to include in family sharing letters.
Authors: Maria C Katapodi; Laurel L Northouse; Kara J Milliron; Guipeng Liu; Sofia D Merajver Journal: Psychooncology Date: 2012-07-24 Impact factor: 3.894
Authors: Cezary Cybulski; Dominika Wokołorczyk; Anna Jakubowska; Tomasz Huzarski; Tomasz Byrski; Jacek Gronwald; Bartłomiej Masojć; Tadeusz Deebniak; Bohdan Górski; Paweł Blecharz; Steven A Narod; Jan Lubiński Journal: J Clin Oncol Date: 2011-08-29 Impact factor: 44.544
Authors: Jennifer L Caswell-Jin; Anjali D Zimmer; Will Stedden; Kerry E Kingham; Alicia Y Zhou; Allison W Kurian Journal: J Natl Cancer Inst Date: 2019-01-01 Impact factor: 13.506
Authors: Deborah Cragun; Jason Beckstead; Meagan Farmer; Gillian Hooker; Marleah Dean; Ellen Matloff; Sonya Reid; Ann Tezak; Anne Weidner; Jennifer G Whisenant; Tuya Pal Journal: BMC Cancer Date: 2021-10-13 Impact factor: 4.430
Authors: Carla Pedrazzani; Monica Aceti; Reka Schweighoffer; Andrea Kaiser-Grolimund; Nicole Bürki; Pierre O Chappuis; Rossella Graffeo; Christian Monnerat; Olivia Pagani; Manuela Rabaglio; Maria C Katapodi; Maria Caiata-Zufferey Journal: J Pers Med Date: 2022-07-29