"When information is not enough": A model for understanding BRCA-positive previvors' information needs regarding hereditary breast and ovarian canc... - PubMed - NCBI
Patient Educ Couns. 2017 Mar 10. pii: S0738-3991(17)30143-X. doi: 10.1016/j.pec.2017.03.013. [Epub ahead of print]
"When information is not enough": A model for understanding BRCA-positive previvors' information needs regarding hereditary breast and ovarian cancer risk.
Abstract
OBJECTIVE:
To investigate BRCA-positive, unaffected patients' - referred to as previvors - information needs after testing positive for a deleterious BRCA genetic mutation. METHODS:
25 qualitative interviews were conducted with previvors. Data were analyzed using the constant comparison method of grounded theory. RESULTS:
Analysis revealed a theoretical model of previvors' information needs related to the stage of their health journey. Specifically, a four-stage model was developed based on the data: (1) pre-testing information needs, (2) post-testing information needs, (3) pre-management information needs, and (4) post-management information needs. Two recurring dimensions of desired knowledge also emerged within the stages-personal/social knowledge and medical knowledge. CONCLUSIONS:
While previvors may be genetically predisposed to develop cancer, they have not been diagnosed with cancer, and therefore have different information needs than cancer patients and cancer survivors. PRACTICE IMPLICATIONS:
This model can serve as a framework for assisting healthcare providers in meeting the specific information needs of cancer previvors. Copyright © 2017 Elsevier B.V. All rights reserved.
KEYWORDS:
BRCA; Decision-making; Genetics; Hereditary breast and ovarian cancer; Information; Previvors; Uncertainty
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