Patient and Provider Perspectives on the Impacts of Unpredictability for Patient Sensemaking: Implications for Intervention Design

Abstract

Patients facing situations with significant unpredictability are met with challenges to expectation formation and preparation. One such context with unpredictable clinical outcomes is bone marrow transplant (BMT) for patients with hematologic malignancies. To understand the experience of unpredictability and opportunities for intervention, semi-structured interviews with patients who had received BMT (n = 7) and transplant providers (n = 8) were conducted. Thematic analysis revealed conflict between the necessity of expectation formation and the unpredictability of transplant. Providers described a tension between adequately informing patients of potential risks of transplant and presenting so much information as to create unnecessary anxiety in patients. Patients described issues with outcome unpredictability (not knowing what particular complications they would experience) and temporal unpredictability (not knowing when complications would appear). Patients struggled to make sense of unexpected complications and resulting limitations post-BMT and plan for the future amid the nonlinear recovery timeline. The challenges of unpredictability warrant a support solution that enables patient sensemaking in their evolving illness journey and facilitates adaptation to new circumstances.