[Perceptions of cystic fibrosis patients, patient relatives and physicians: barriers or motivations to lung transplantation]

Abstract

Introduction: The aims of this study are to describe qualitatively the perceptions of three groups involved in the cystic fibrosis transplant decision, looking for similarities and differences between groups, and to identify those that act as motivations or barriers to transplantation.

Methods: Thirty patients, 26 patient relatives and 27 physicians were interviewed, and concept maps were constructed from those interviews. Their degree of transplant acceptance at the time of the interview was measured.

Results: There were motivations and barriers in the pre-, peri- and post-transplant period. Analysis revealed similar perceptions regarding the risks and benefits of transplantation, but also different perceptions in the specific concerns of each group. Patients and patient relatives expressed many questions and fears in their concept maps, and physicians expressed difficulties.

Conclusions: This study highlights the value of better understanding the perceptions of patients, relatives and physicians, in order to remove some of the barriers to transplantation. It also demonstrates the benefits of education and support activities for patients and patient relatives prior to transplantation, and continuing education and supervision for physicians.

Keywords: Aidant; Carte conceptuelle; Concept map; Cystic fibrosis; Lung transplantation; Mucoviscidose; Médecin; Patient; Patient relative; Perception; Physician; Représentation; Transplantation pulmonaire.