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Motivations for Males Affected by HBOC to Disclose Genetic Health Information to Family Members and Health Care Providers

Suttman, Alexandra Grace
http://orcid.org/0000-0002-9221-2961
http://rave.ohiolink.edu/etdc/view?acc_num=osu1459960861

Abstract Details

2016, Master of Science, Ohio State University, Genetic Counseling.
Introduction: Hereditary breast and ovarian cancer syndrome (HBOC) is a cancer-predisposition syndrome that affects both men and women, with more significant cancer risk elevations in women. Because there are well-established guidelines for cancer risk reduction and prevention in HBOC, it is critical that health care professionals understand information-sharing patterns among patients to facilitate communication processes and identify at-risk family members. Dissemination of familial genetic risk information in females with HBOC is well defined, but knowledge about how males share this information is limited. The aims of this study include: to describe participants’ feelings and opinions about HBOC; to ascertain participants’ extent of information sharing with family and medical personnel; and to describe the needs of participants for information and resources provided by genetic counselors and other health care providers. Methods: We interviewed 21 primarily Ashkenazi Jewish men who were accrued through Facing Our Risk of Cancer Empowered (FORCE). Interviews focused on family cancer history, experiences with cancer and genetic testing, motivations to pursue genetic testing and subsequently disclose genetic test results, information sharing patterns, healthcare provider response, and participants’ emotional support systems. The interviews were transcribed in their entirety, coded, and analyzed based on grounded theory. Results: Eighteen transcripts were used for the analysis. Results can be classified into 5 main themes. Participants (n=8) were most concerned about cancer risk for their children and female family members, and most (n=11) mentioned HBOC provides them increased personal awareness, but has a negligible impact on their life overall (n=9). Men (n=11) were interested in a male focused support group to discuss HBOC and gain knowledge and information. Participants (n=9) took on active and open communication roles with family members and health care providers. The majority of participants (n=14) discussed the need for knowledge and awareness among the health care community and general population regarding male HBOC risks. Conclusion: This study serves as a pilot study and provides important and novel insights into psychosocial impacts, communication patterns, encounters with health care practitioners, and expressed needs of males with HBOC.
Leigha Senter, MS, LGC (Advisor)
Robert Pilarski, MS, LGC (Committee Member)
Doreen Agnese, MD (Committee Member)
62 p.
Gender; Genetics
Males; HBOC; Concerns; Dissemination; Sharing; Information; Family members; Health care providers; BRCA

Recommended Citations

Citations

  • Suttman, A. G. (2016). Motivations for Males Affected by HBOC to Disclose Genetic Health Information to Family Members and Health Care Providers [Master's thesis, Ohio State University]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=osu1459960861

    APA Style (7th edition)

  • Suttman, Alexandra. Motivations for Males Affected by HBOC to Disclose Genetic Health Information to Family Members and Health Care Providers. 2016. Ohio State University, Master's thesis. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=osu1459960861.

    MLA Style (8th edition)

  • Suttman, Alexandra. "Motivations for Males Affected by HBOC to Disclose Genetic Health Information to Family Members and Health Care Providers." Master's thesis, Ohio State University, 2016. http://rave.ohiolink.edu/etdc/view?acc_num=osu1459960861

    Chicago Manual of Style (17th edition)

osu1459960861
481
© 2016, all rights reserved.
This open access ETD is published by The Ohio State University and OhioLINK.