Literature DB >> 27473644

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

Carla L Fisher1,2, Thomas Roccotagliata3, Camella J Rising3, David W Kissane4,5, Emily A Glogowski6, Carma L Bylund5,7,8.   

Abstract

Families who face genetic disease risk must learn how to grapple with complicated uncertainties about their health and future on a long-term basis. Women who undergo BRCA 1/2 genetic testing describe uncertainty related to personal risk as well as their loved ones', particularly daughters', risk. The genetic counseling setting is a prime opportunity for practitioners to help mothers manage uncertainty in the moment but also once they leave a session. Uncertainty Management Theory (UMT) helps to illuminate the various types of uncertainty women encounter and the important role of communication in uncertainty management. Informed by UMT, we conducted a thematic analysis of 16 genetic counseling sessions between practitioners and mothers at risk for, or carriers of, a BRCA1/2 mutation. Five themes emerged that represent communication strategies used to manage uncertainty: 1) addresses myths, misunderstandings, or misconceptions; 2) introduces uncertainty related to science; 3) encourages information seeking or sharing about family medical history; 4) reaffirms or validates previous behavior or decisions; and 5) minimizes the probability of personal risk or family members' risk. Findings illustrate the critical role of genetic counseling for families in managing emotionally challenging risk-related uncertainty. The analysis may prove beneficial to not only genetic counseling practice but generations of families at high risk for cancer who must learn strategic approaches to managing a complex web of uncertainty that can challenge them for a lifetime.

Entities:  

Keywords:  BRCA1; BRCA2; Breast cancer; Communication; Coping; Disease risk; Family communication; Genetic counseling; Genetic testing; Qualitative research; Uncertainty

Mesh:

Year:  2016        PMID: 27473644     DOI: 10.1007/s10897-016-9998-x

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


  30 in total

1.  Writing usable qualitative health research findings.

Authors:  Margarete Sandelowski; Jennifer Leeman
Journal:  Qual Health Res       Date:  2012-06-28

2.  Socioeconomic influences on the effects of a genetic testing direct-to-consumer marketing campaign.

Authors:  D J Bowen; J Harris; C M Jorgensen; M F Myers; A Kuniyuki
Journal:  Public Health Genomics       Date:  2009-07-28       Impact factor: 2.000

3.  BRCA genetic counseling among at-risk Latinas in New York City: new beliefs shape new generation.

Authors:  Katarina M Sussner; Tiffany Edwards; Cristina Villagra; M Carina Rodriguez; Hayley S Thompson; Lina Jandorf; Heiddis B Valdimarsdottir
Journal:  J Genet Couns       Date:  2014-08-15       Impact factor: 2.537

4.  What women with breast cancer discuss with clinicians about risk for their adolescent daughters.

Authors:  Erin Maloney; Shawna Edgerson; Mark Robson; Ken Offit; Richard Brown; Carma Bylund; David W Kissane
Journal:  J Psychosoc Oncol       Date:  2012

5.  "Talking About Chance": The Presentation of Risk Information During Genetic Counseling for Breast and Ovarian Cancer.

Authors:  N Hallowell; H Statham; F Murton; J Green; M Richards
Journal:  J Genet Couns       Date:  1997-09       Impact factor: 2.537

6.  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

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.  Assessing oral literacy demand in genetic counseling dialogue: preliminary test of a conceptual framework.

Authors:  Debra L Roter; Lori H Erby; Susan Larson; Lee Ellington
Journal:  Soc Sci Med       Date:  2007-07-05       Impact factor: 4.634

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  6 in total

1.  Genetic testing and eHealth usage among Deaf women.

Authors:  Poorna Kushalnagar; Juliana Holcomb; Georgia R Sadler
Journal:  J Genet Couns       Date:  2019-06-10       Impact factor: 2.537

2.  "I wish that there was more info": characterizing the uncertainty experienced by carriers of pathogenic ATM and/or CHEK2 variants.

Authors:  Kathryn G Reyes; Cheyla Clark; Meredith Gerhart; Ainsley J Newson; Kelly E Ormond
Journal:  Fam Cancer       Date:  2021-04-15       Impact factor: 2.375

3.  Theory utilization in current communication of cancer genetic testing research: Identified gaps and opportunities.

Authors:  Daniel Chavez-Yenter; Jingsong Zhao; Chelsea L Ratcliff; Kelsey Kehoe; Allison Blumling; Emily Peterson; William M P Klein; Wen-Ying Sylvia Chou; Kimberly A Kaphingst
Journal:  Soc Sci Med       Date:  2021-06-17       Impact factor: 5.379

4.  Partnering With Mommy Bloggers to Disseminate Breast Cancer Risk Information: Social Media Intervention.

Authors:  Kevin Wright; Carla Fisher; Camella Rising; Amelia Burke-Garcia; Dasha Afanaseva; Xiaomei Cai
Journal:  J Med Internet Res       Date:  2019-03-07       Impact factor: 5.428

5.  "You Always Have It in the Back of Your Mind"-Feelings, Coping, and Support Needs of Women with Pathogenic Variants in Moderate-Risk Genes for Hereditary Breast Cancer Attending Genetic Counseling in Germany: A Qualitative Interview Study.

Authors:  Claudia Stracke; Clarissa Lemmen; Kerstin Rhiem; Rita Schmutzler; Sibylle Kautz-Freimuth; Stephanie Stock
Journal:  Int J Environ Res Public Health       Date:  2022-03-16       Impact factor: 3.390

6.  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

  6 in total

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