Consenting rather than choosing. A qualitative study on overseas patients' decision to undergo hematopoietic stem cell transplantation

Abstract

Abstract Objective Reasons for patients' acceptance of the allogeneic hematopoietic stem cell transplantation (allo‐HSCT) proposed and how their decision may be affected by the long distances involved have not been sufficiently investigated so far. We therefore conducted a qualitative study to identify the factors involved in overseas patients' decision to accept allo‐HSCT. Methods In‐depth semi‐directive interviews were conducted with overseas allo‐grafted patients (n = 22), as well as one non‐consenting patient and their caregivers (n = 24). Interviews were analyzed taking an inductive thematic approach. Results Respondents stated that their decision to undergo the transplantation was constrained by their feeling of being in a therapeutic impasse, the need for a survival strategy, the need to survive for their family's sake, family and doctors' pressures, and the feeling of being managed. The following factors favoring patients' acceptance were the medical information received, their faith, having a family donor, peer testimonies, and positive representations of the transplantation. Factors against patients' acceptance were geographical distance from home to the transplant center, apprehension of protective isolation, fear of dying, and representations of the graft. Conclusions These factors, such as patient's personal values and representations, need to be weighed up in order to adapt the information exchanged accordingly. Efforts are required to relieve patients' social isolation and improve the means of providing family support.

Keywords

• allogeneic hematopoietic stem cell transplantation
• bone marrow transplantation
• France
• informed consent
• La Réunion
• patients' decision making