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Journal of Genetic Counseling

, Volume 19, Issue 5, pp 447–462 | Cite as

Pre-counseling Education for Low Literacy Women at Risk of Hereditary Breast and Ovarian Cancer (HBOC): Patient Experiences Using the Cancer Risk Education Intervention Tool (CREdIT)

  • Galen JosephEmail author
  • Mary S. Beattie
  • Robin Lee
  • Dejana Braithwaite
  • Carolina Wilcox
  • Maya Metrikin
  • Kate Lamvik
  • Judith Luce
Original Research

Abstract

The Cancer Risk Education Intervention Tool (CREdIT) is a computer-based (non-interactive) slide presentation designed to educate low-literacy, and ethnically and racially diverse public hospital patients at risk of Hereditary Breast and Ovarian Cancer (HBOC) about genetics. To qualitatively evaluate participants’ experience with and perceptions of a genetic education program as an adjunct to genetic counseling, we conducted direct observations of the intervention, semi-structured in person interviews with 11 women who viewed CREdIT, and post-counseling questionnaires with the two participating genetic counselors. Five themes emerged from the analysis of interviews: (1) genetic counseling and testing for breast/ovarian cancer was a new concept; (2) CREdIT’s story format was particularly appealing; (3) changes in participants’ perceived risk for breast cancer varied; (4) some misunderstandings about individual risk and heredity persisted after CREdIT and counseling; (5) the context for viewing CREdIT shaped responses to the presentation. Observations demonstrated ways to make the information provided in CREdIT and by genetic counselors more consistent. In a post-session counselor questionnaire, counselors’ rating of the patient’s preparedness before the session was significantly higher for patients who viewed CREdIT prior to their appointments than for other patients. This novel educational tool fills a gap in HBOC education by tailoring information to women of lower literacy and diverse ethnic/racial backgrounds. The tool was well received by interview participants and counselors alike. Further study is needed to examine the varied effects of CREdIT on risk perception. In addition, the implementation of CREdIT in diverse clinical settings and the cultural adaptation of CREdIT to specific populations reflect important areas for future work.

Keywords

Hereditary breast and ovarian cancer Health disparities Underserved Genetic Education Qualitative Research 

Notes

Acknowledgments

This research study was made possible with support from the Avon Foundation. In addition, the authors would like to thank the participants for generously giving their time and sharing their thoughts.

Open Access

This article is distributed under the terms of the Creative Commons Attribution Noncommercial License which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited.

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Copyright information

© The Author(s) 2010

Open AccessThis is an open access article distributed under the terms of the Creative Commons Attribution Noncommercial License (https://doi.org/creativecommons.org/licenses/by-nc/2.0/), which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited.

Authors and Affiliations

  • Galen Joseph
    • 1
    • 7
    Email author
  • Mary S. Beattie
    • 2
    • 3
    • 4
  • Robin Lee
    • 3
  • Dejana Braithwaite
    • 4
  • Carolina Wilcox
    • 5
  • Maya Metrikin
    • 3
  • Kate Lamvik
    • 3
  • Judith Luce
    • 6
  1. 1.Department of Anthropology, History, and Social MedicineUniversity of California, San FranciscoSan FranciscoUSA
  2. 2.Department of MedicineUniversity of California, San FranciscoSan FranciscoUSA
  3. 3.University of California, San Francisco, and San Francisco General Hospital Cancer Risk ProgramSan FranciscoUSA
  4. 4.Department of Epidemiology & BiostatisticsUniversity of California, San FranciscoSan FranciscoUSA
  5. 5.San Antonio Medical SchoolUniversity of TexasSan AntonioUSA
  6. 6.Oncology and Hematology DepartmentUniversity of California, San Francisco, and San Francisco General HospitalSan FranciscoUSA
  7. 7.Department of Anthropology, History, and Social MedicineUniversity of California, San FranciscoSan FranciscoUSA

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