Marleah Dean1. 1. Department of Communication, University of South Florida, 4202 E. Fowler CIS 3057, Tampa, FL 33620, USA. Electronic address: marleahdeank@usf.edu.
Abstract
RATIONALE: Women with a harmful mutation in the BReast CAncer (BRCA) gene are at significantly increased risk of developing hereditary breast and ovarian cancer (HBOC) during their lifetime, compared to those without. Such patients-with a genetic predisposition to develop cancer but who have not yet been diagnosed with cancer-live in a constant state of uncertainty and wonder not if they might get cancer but when. OBJECTIVE: Framed by uncertainty management theory, the purpose of this study was to explore BRCA-positive patients' health experiences after testing positive for the BRCA genetic mutation, specifically identifying their sources of uncertainty. METHODS: Thirty-four, qualitative interviews were conducted with female patients. Participants responded to online research postings on the non-profit organization Facing Our Risk of Cancer Empowered's (FORCE) message board and social media pages as well as HBOC-specific Facebook groups. The interview data were coded using the constant comparison method. RESULTS: Two major themes representing BRCA-positive patients' sources of uncertainty regarding their genetic predisposition and health experiences emerged from the data. Medical uncertainty included the following three subthemes: the unknown future, medical appointments, and personal cancer scares. Familial uncertainty encompassed the subthemes traumatic family cancer memories and motherhood. CONCLUSIONS: Overall, the study supports and extends existing research on uncertainty-revealing uncertainty is inherent in BRCA-positive patients' health experiences-and offers new insight regarding uncertainty management and HBOC risk.
RATIONALE: Women with a harmful mutation in the BReast CAncer (BRCA) gene are at significantly increased risk of developing hereditary breast and ovarian cancer (HBOC) during their lifetime, compared to those without. Such patients-with a genetic predisposition to develop cancer but who have not yet been diagnosed with cancer-live in a constant state of uncertainty and wonder not if they might get cancer but when. OBJECTIVE: Framed by uncertainty management theory, the purpose of this study was to explore BRCA-positive patients' health experiences after testing positive for the BRCA genetic mutation, specifically identifying their sources of uncertainty. METHODS: Thirty-four, qualitative interviews were conducted with female patients. Participants responded to online research postings on the non-profit organization Facing Our Risk of Cancer Empowered's (FORCE) message board and social media pages as well as HBOC-specific Facebook groups. The interview data were coded using the constant comparison method. RESULTS: Two major themes representing BRCA-positive patients' sources of uncertainty regarding their genetic predisposition and health experiences emerged from the data. Medical uncertainty included the following three subthemes: the unknown future, medical appointments, and personal cancer scares. Familial uncertainty encompassed the subthemes traumatic family cancer memories and motherhood. CONCLUSIONS: Overall, the study supports and extends existing research on uncertainty-revealing uncertainty is inherent in BRCA-positive patients' health experiences-and offers new insight regarding uncertainty management and HBOC risk.
Authors: David Levy; Haryana M Dhillon; Anna Lomax; Michael Marthick; Catriona McNeil; Steven Kao; Judith Lacey Journal: Support Care Cancer Date: 2018-09-04 Impact factor: 3.603
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
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