Hoping for a normal life: Decision‐making on hematopoietic stem cell transplantation by patients with a hemoglobinopathy and their caregivers
Hilda Mekelenkamp,
Martine de Vries,
Ineke Saalmink
et al.
Abstract:BackgroundTo provide insight into the perspectives of children and young adults with transfusion‐dependent thalassemia and sickle cell disease and their caregivers regarding the decision for hematopoietic stem cell transplantation (HSCT).ProcedureA qualitative longitudinal multicenter study. Data collection consisted of 40 audio‐recorded conversations between physicians and families and 77 interviews with patients and/or caregivers related to 27 unique cases, collected at different time points throughout the d… Show more
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