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"When information is not enough": A model for understanding BRCA-positive previvors' information needs regarding
Marleah Dean1, Courtney L Scherr2, Meredith Clements1
1Department of Communication, University of South Florida, Tampa, FL, USA.
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.