Consenting rather than choosing. A qualitative study on overseas patients' decision to undergo hematopoietic stem cell transplantation
- PMID: 38193147
- PMCID: PMC10807688
- DOI: 10.1002/cam4.6934
Consenting rather than choosing. A qualitative study on overseas patients' decision to undergo hematopoietic stem cell transplantation
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: France; La Réunion; allogeneic hematopoietic stem cell transplantation; bone marrow transplantation; informed consent; patients' decision making; qualitative study.
© 2024 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.
Conflict of interest statement
The authors have no conflicts of interest to declare.
References
-
- Jacoby LH, Maloy B, Cirenza E, Shelton W, Goggins T, Balint J. The basis of informed consent for BMT patients. Bone Marrow Transplant. 1999;23(7):711‐717. - PubMed
-
- Thibert JB, Polomeni A, Yakoub‐Agha I, Bordessoule D. Considérations générales et éthiques pour le recueil d'un consentement éclairé: recommandations de la Société francophone de greffe de moelle et de thérapie cellulaire (SFGM‐TC). Bull Cancer. 2016;103(11):S207‐S212. - PubMed
-
- Lesko LM, Dermatis H, Penman D, Holland JC. Patients', parents', and oncologists' perceptions of informed consent for bone marrow transplantation. Med Pediatr Oncol. 1989;17(3):181‐187. - PubMed
-
- Little M, Jordens CFC, McGrath C, Montgomery K, Lipworth W, Kerridge I. Informed consent and medical ordeal: a qualitative study. Intern Med J. 2008;38:624‐628. - PubMed
-
- Forsyth R, Scanlan C, Carter SM, Jordens C, Kerridge I. Decision making in a crowded room: the relational significance of social roles in decisions to proceed with allogeneic stem cell transplantation. Qual Health Res. 2011;21:1260‐1272. - PubMed
Publication types
MeSH terms
Grants and funding
LinkOut - more resources
Full Text Sources
