Marleah Dean1, Courtney L Scherr2, Meredith Clements3, Rachel Koruo3, Jennifer Martinez3, Amy Ross2. 1. Department of Communication, University of South Florida, Tampa, FL, USA. Electronic address: marleahdeank@usf.edu. 2. Department of Communication Studies, Northwestern University, Chicago, IL, USA. 3. Department of Communication, University of South Florida, Tampa, FL, USA.
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.
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 cancerpatients 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.