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Abstract
Transitional points in patient care, such as handoffs and hospital discharges, are known to have unique information challenges. Transitions following long-term care involve even more complex processes. In this study, we examine the informational and contextual issues for patients transitioning from the care of specialists who have come to know them through long-term partnerships to clinicians potentially less familiar with patients’ chronic care concerns. The context is bone marrow transplant (BMT); specifically allogeneic transplants, which involve risk for particular chronic complications and a long-term process that requires close monitoring of patients by BMT specialists for at least a year beyond the actual transplant procedure. Based on a 16-month field study, we examine patient experience and clinician viewpoints regarding the transition of patient responsibility from BMT clinicians to primary care or oncologists, and detail the important issues for patients and clinicians.
Acknowledgements
Our most sincere gratitude goes to all the clinicians, patients, and caregivers who have kindly and patiently given us their time, for sharing their experiences, knowledge and insights with us. We thank the BMT clinic staff in particular for their unfailing help and support during the ethnographic fieldwork. We would also like to thank our colleagues in the SocialWorlds Research Group at the University of Michigan's School of Information for their support throughout this project.
Notes
1. Team structures are discussed below.
2. Transplant can also be syngeneic, meaning the donor is the identical twin of the patient.
3. Boston Scleral Lens.
4. PEs are not involved in the care process in the pre-transplant period.
5. Words in italics reflect original emphases.
6. A viral infection.