Literature DB >> 21833819

Sources of uncertainty about daughters' breast cancer risk that emerge during genetic counseling consultations.

Carma L Bylund1, Carla L Fisher, Dale Brashers, Shawna Edgerson, Emily A Glogowski, Sherry R Boyar, Yelena Kemel, Sara Spencer, David Kissane.   

Abstract

Uncertainty is central to the experience of genetic decision making and counseling about cancer risk. Women seeking genetic counseling about their breast cancer risk may experience a great deal of uncertainty about issues related to their daughters. We used a theory of Communication and Uncertainty Management to guide analysis of sources of uncertainty about daughters that emerged during 16 video-recorded and transcribed conversations between mothers at risk for a BRCA 1/2 mutation and their genetic healthcare practitioners. An interpretive design and constant comparative method revealed three dominant patterns or themes representing sources of uncertainty mothers have relating to their daughters: disease risk, future cancer screening, and communication of related information to daughters. Both practitioners and mothers discussed these aspects of uncertainty. The findings identify the significant role uncertainty and familial concerns play in mothers' genetic testing decision making process. To assist genetic practitioners, we highlight daughter-related concerns that mothers are uncertain about and which are vital to their genetic counseling needs.

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Year:  2011        PMID: 21833819     DOI: 10.1007/s10897-011-9400-y

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  20 in total

Review 1.  How risk is perceived, constructed and interpreted by clients in clinical genetics, and the effects on decision making: systematic review.

Authors:  Stephanie Sivell; Glyn Elwyn; Clara L Gaff; Angus J Clarke; Rachel Iredale; Chris Shaw; Joanna Dundon; Hazel Thornton; Adrian Edwards
Journal:  J Genet Couns       Date:  2007-10-30       Impact factor: 2.537

2.  Participation in breast cancer susceptibility testing protocols: influence of recruitment source, altruism, and family involvement on women's decisions.

Authors:  G Geller; T Doksum; B A Bernhardt; S A Metz
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  1999-04       Impact factor: 4.254

Review 3.  The role of intimate others in medical decision making.

Authors:  N S Jecker
Journal:  Gerontologist       Date:  1990-02

4.  Decision making with uncertain information: learning from women in a high risk breast cancer clinic.

Authors:  Caren J Frost; Vickie Venne; Dianne Cunningham; Ruth Gerritsen-McKane
Journal:  J Genet Couns       Date:  2004-06       Impact factor: 2.537

5.  Experiences and decisions that motivate women at increased risk of breast cancer to participate in an experimental screening program.

Authors:  Michelle Proulx; Marie-Dominique Beaulieu; Christine Loignon; Marie-Hélène Mayrand; Christine Maugard; Nathalie Bellavance; Diane Provencher
Journal:  J Genet Couns       Date:  2009-02-14       Impact factor: 2.537

Review 6.  Psychological impact of genetic counseling for familial cancer: a systematic review and meta-analysis.

Authors:  Dejana Braithwaite; Jon Emery; Fiona Walter; A Toby Prevost; Stephen Sutton
Journal:  J Natl Cancer Inst       Date:  2004-01-21       Impact factor: 13.506

7.  The medical, personal, and social causes of uncertainty in HIV illness.

Authors:  Dale E Brashers; Judith L Neidig; Jane A Russell; Linda W Cardillo; Stephen M Haas; Linda K Dobbs; Marie Garland; Bill McCartney; Sally Nemeth
Journal:  Issues Ment Health Nurs       Date:  2003 Jul-Aug       Impact factor: 1.835

8.  An investigation of the disclosure process and support needs of BRCA1 and BRCA2 carriers.

Authors:  Jordana Segal; Mary Jane Esplen; Brenda Toner; Sylvia Baedorf; Steven Narod; Kate Butler
Journal:  Am J Med Genet A       Date:  2004-03-15       Impact factor: 2.802

9.  The effect of BRCA gene testing on family relationships: A thematic analysis of qualitative interviews.

Authors:  Heather A Douglas; Rebekah J Hamilton; Robin E Grubs
Journal:  J Genet Couns       Date:  2009-05-29       Impact factor: 2.537

10.  The third person in the room: frequency, role, and influence of companions during primary care medical encounters.

Authors:  Lisa M Schilling; Lisa Scatena; John F Steiner; Gail A Albertson; C T Lin; Lisa Cyran; Lindsay Ware; Robert J Anderson
Journal:  J Fam Pract       Date:  2002-08       Impact factor: 0.493

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  14 in total

1.  "I Don't Want to Be an Ostrich": Managing Mothers' Uncertainty during BRCA1/2 Genetic Counseling.

Authors:  Carla L Fisher; Thomas Roccotagliata; Camella J Rising; David W Kissane; Emily A Glogowski; Carma L Bylund
Journal:  J Genet Couns       Date:  2016-07-30       Impact factor: 2.537

2.  Communicating with Daughters About Familial Risk of Breast Cancer: Individual, Family, and Provider Influences on Women's Knowledge of Cancer Risk.

Authors:  Lucy A Peipins; Juan L Rodriguez; Nikki A Hawkins; Ashwini Soman; Mary C White; M Elizabeth Hodgson; Lisa A DeRoo; Dale P Sandler
Journal:  J Womens Health (Larchmt)       Date:  2018-01-29       Impact factor: 2.681

3.  How does genetic testing influence anxiety, depression, and quality of life? A hereditary breast and ovarian cancer syndrome suspects trial.

Authors:  Francisca Fernanda Barbosa Oliveira; Paulo Goberlânio de Barros Silva; Rosane Oliveira de Sant'Ana; Clarissa Gondim Picanço de Albuquerque; Maria Júlia Barbosa Bezerra; Deysi Viviana Tenazoa Wong; Flávio da Silveira Bitencourt; Isabelle Joyce de Lima Silva-Fernandes; Marcos Venicio Alves Lima
Journal:  Support Care Cancer       Date:  2020-11-05       Impact factor: 3.603

4.  Using communication to manage uncertainty about cervical cancer screening guideline adherence among Appalachian women.

Authors:  Elisia L Cohen; Allison Scott Gordon; Rachael Record; Sara Shaunfield; Grace M Jones; Tom Collins
Journal:  J Appl Commun Res       Date:  2016-02-18

5.  More breast cancer patients prefer BRCA-mutation testing without prior face-to-face genetic counseling.

Authors:  Aisha S Sie; Wendy A G van Zelst-Stams; Liesbeth Spruijt; Arjen R Mensenkamp; Marjolijn J L Ligtenberg; Han G Brunner; Judith B Prins; Nicoline Hoogerbrugge
Journal:  Fam Cancer       Date:  2014-06       Impact factor: 2.375

6.  Referencing BRCA in hereditary cancer risk discussions: In search of an anchor in a sea of uncertainty.

Authors:  Margaret Waltz; Anya E R Prince; Julianne M O'Daniel; Ann Katherine M Foreman; Bradford C Powell; Jonathan S Berg
Journal:  J Genet Couns       Date:  2020-01-22       Impact factor: 2.537

7.  Communication Between Breast Cancer Patients Who Received Inconclusive Genetic Test Results and Their Daughters and Sisters Years After Testing.

Authors:  Jessica E Baars; Margreet G E M Ausems; Els van Riel; Marijke C Kars; Eveline M A Bleiker
Journal:  J Genet Couns       Date:  2015-10-08       Impact factor: 2.537

8.  Sharing genetic test results with family members of BRCA, PALB2, CHEK2, and ATM carriers.

Authors:  Marleah Dean; Ann L Tezak; Sabrina Johnson; Joy K Pierce; Anne Weidner; Kate Clouse; Tuya Pal; Deborah Cragun
Journal:  Patient Educ Couns       Date:  2021-01-05

9.  DNA-testing for BRCA1/2 prior to genetic counselling in patients with breast cancer: design of an intervention study, DNA-direct.

Authors:  Aisha S Sie; Liesbeth Spruijt; Wendy A G van Zelst-Stams; Arjen R Mensenkamp; Marjolijn J Ligtenberg; Han G Brunner; Judith B Prins; Nicoline Hoogerbrugge
Journal:  BMC Womens Health       Date:  2012-05-08       Impact factor: 2.809

10.  Blood cancer caregiving during COVID-19: understanding caregivers' needs.

Authors:  Carla L Fisher; Kevin B Wright; Chelsea N Hampton; Taylor S Vasquez; Amanda Kastrinos; Allison J Applebaum; Maria Sae-Hau; Elisa S Weiss; Greg Lincoln; Carma L Bylund
Journal:  Transl Behav Med       Date:  2021-05-25       Impact factor: 3.046

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