Decision-making in pediatric hematopoeitic cell transplantation

Title on title page: Decision-making in pediatric hematopoeitic cell transplantion, Title on signature page: Decision-making in pediatric hematopoeitic cell transplantation[ACCESS RESTRICTED TO THE UNIVERSITY OF MISSOURI AT AUTHOR'S REQUEST.] Hematopoietic cell transplantation (HCT) is a treatment option utilized to cure many childhood disorders, with cancer, sickle cell disease (SCD), and aplastic anemia being a few. The decision of whether or not to pursue HCT involves uncertainty and risk. Pediatric patients with SCD and their families undergo a decision-making process distinct from patients with childhood cancer. Patients with sickle cell disease (SCD) realize an awareness of unpredictable disease progression and conflict when considering HCT, while patients with cancer perceive an urgency for survival. We applied Connor's Framework of Decisional Conflict and a multiple-case study approach to describe the level and source of decisional conflict in patients with SCD and their families in a real-life decision choice of HCT. The contribution of the pediatric patient in the decision was also described in our four families. Observation, survey, and interview methods allowed us to gain an in-depth understanding of their conflict. Through pattern-matching and cross-case synthesis, we found that the level and sources of conflict among 11 participants varied within and across family members. Some experienced levels that resulted in a delayed decision or feeling unsure. The patients and their family members ultimately navigated their uncertainties together to come to consensus on whether to proceed with HCT. Future studies should implement individualized interventions from a family research perspective to decrease the decisional conflict this population faces