Exploring Survivor Experiences and Emotions Expressed about Loss and Responsibility Following a Thrombosis Event

Abstract

We explored the experiences and emotions women expressed about having a blood clot, including revelations about family members' decision to avoid disclosing inherited risk for clotting. We do this through analysis of in-depth life reflection interviews (N = 20) of women who experienced a first venous blood clot between the ages of 18 and 50 years. Selective coding reduced the data to an overarching story associated with thrombosis survivorship and loss across multiple life domains. The themes identified include participant revelations about living in the shadow of genetic susceptibility for thrombosis. Participants manage changes associated with lingering health effects, and daily routines for work and life, adapting their lives to manage coagulability. A second theme reveals the fallout linked to the severity of thrombosis encompassed in haunting psychological scenarios, persistent emotional concerns, and social discrimination. Participants assumed responsibility to disclose inherited risk, with the women expressing empowerment in knowing risks and acknowledging possible genetic testing mistakes. The overarching perspective was one of hope through proactive actions in occupational, recreational, and relational realms. We offer our findings as a theoretical depiction of thrombosis survivor identity and the need for public health and clinical communication to support disclosing family history for clotting.

Keywords:

• Survivor Identity
• Thrombosis
• Disclosure Avoidance
• Family History Communication