Medical, Personal, and Social Forms of Uncertainty Across the Transplantation Trajectory

We designed this study to identify sources of uncertainty across the transplantation trajectory. We interviewed 38 transplant patients, who reported medical, personal, and social forms of uncertainty. Prior to transplantation, they reported uncertainty related to insufficient information about diagnosis, complex decisions about transplantation, unknown/unknowable organ availability, unclear expectations about medical procedures/outcomes, ambiguity in meaning of life, complex role and identity challenges, unclear financial consequences, questioning from others, and unclear relational implications. They reported that uncertainty experienced after transplantation was related to complex medication regimens, unpredictable future health/prognosis, complex role and identity challenges, unclear financial consequences, possible stigmatizing reactions, unclear relational implications, and complex interactions with the deceased donor's family. These findings lay the groundwork for additional research on uncertainty management for transplant patients, and suggest that health care professionals and supportive others cannot apply a one-size-fits-all solution when aiding in uncertainty management.