Patients' Experiences of Person-Centered Care in the Context of Allogenic Stem Cell Transplantation.

Abstract

Studies addressing patients' experiences of person-centered care (PCC) in the context of allogeneic hematopoietic stem cell transplantation (allo-HSCT) are scarce; hence, this study aimed to explore patients' experiences of PCC, and its associations with individual characteristics and health-related quality of life, in the context of allogeneic stem cell transplantation. It is a cross-sectional survey study, in patients who had undergone an allo-HSCT at one center in Sweden. The PCC instrument for outpatient care in rheumatology (PCCoc/rheum) was used. Descriptive and analytical statistics were employed. The study had 126 participants, evenly distributed males and females, 18-79 years old (>60% were 50-69 years old), and most were (>70%) married or cohabiting. The sum score for all items on PCCoc/rheum ranged from 20 to 72 (higher score = higher degree of PCC), with a mean value of 62.67 (SD: 9.863). Most participants (87-99%) agreed with the level of person-centeredness for 22 of the 24 items. Of the participants, 83.3% agreed that they had undisturbed conversations, that their problems had been taken seriously (79.0%), that they had an opportunity to tell their story (77.8%), and collaboration with the nurse was good (77.6%). A sizeable proportion disagreed that the care environment was welcoming (11.9%), family members' involvement (13.7%), and the possibility to influence the care (15.5%). The fulfillment of PCC was rated as high, but the results indicate that there is room for improvement regarding the possibility of influencing the care and family members' involvement.