The BRCA1/2 Previvor Information Journey: Understanding What Helps or Hinders

Abstract

ABSTRACT BRCA1/2 previvors – individuals who have a genetic mutation that increases their lifetime risk of developing breast or ovarian cancer – have unique information needs. Previvors can experience distress and uncertainty when these needs are not met, which can have negative consequences on their physical and psychological health. Previous research suggests meeting previvors’ information needs is one way to combat these potential harmful effects. However, limited past research has examined previvors’ perceptions of the helpfulness of information. Therefore, through surveying 101 previvors, this study explored previvors’ perceptions of the (un)helpfulness of information, what (lack of) barriers previvors face to finding desired information, and the information sources they utilized. A thematic analysis revealed that previvors generally viewed information as helpful (through empowerment, coping, camaraderie, and action) but not always (evident in information overload). Previvors also reported several barriers (such as “the healthcare system in general”, exclusivity, and uncertainty), while others reported a lack of resistance to finding desired information. Additionally, frequencies were calculated to find that various healthcare providers, support groups, and friends and family were common information sources. Taken together, these results offer a psychosocial model for understanding the previvor information journey, displaying how the themes are interconnected and unique for each previvor.