Kidney, Lung and Liver Transplant Patients’, Kidney Transplant Candidates’ and Living Donors’ Perspectives on the Role of Patients’ Stories and Creative Writing in Transplantation: An Exploratory Study
1McGill University, Montreal, QC, Canada, 2CRCHUM, Montreal, QC, Canada, 3University of Montreal, Montreal, QC, Canada
Meeting: 2022 American Transplant Congress
Abstract number: 1611
Keywords: Psychosocial
Topic: Clinical Science » Ethics » 22 - Psychosocial and Treatment Adherence
Session Information
Session Name: Psychosocial and Treatment Adherence
Session Type: Poster Abstract
Date: Tuesday, June 7, 2022
Session Time: 7:00pm-8:00pm
Presentation Time: 7:00pm-8:00pm
Location: Hynes Halls C & D
*Purpose: Organ transplantation is associated with medical, psychological and existential challenges for patients. Patients’ experiential knowledge can help other patients facing these challenges. Patients’ stories and creative writings are ways to operationalize this experiential knowledge. The objective of this study is to gather kidney, lung and liver transplant recipients’ (TRs), kidney transplant candidates’ (TCs) and kidney living donors’ (LDs) perspectives on the role of creative writing and patients’ stories.
*Methods: We conducted 4 focus groups and 24 semi-directed individual interviews with 34 TRs, 5 TCs and 8 LDs from a university health center between June 2020 and July 2021. The interviews were digitally recorded and transcribed. Thematic and content analyses were conducted.
*Results: All participants were interested in sharing their transplant and donation stories and enthusiastic about the development of a web platform bringing together patients’ stories and creative writings. Some participants expressed concern about the balance of positive and negative stories being shared. The most important moments in their transplant or donation journey were the organ donation offer and post-transplant experiences, including complications and fear of rejection. Patients’ stories are viewed as a way to learn about other experiences, to feel encouraged and to gain perspective with their own journey. They recommended that creative writings should take different literary forms such as fiction, comics and tales and should depict different aspects of transplantation.
*Conclusions: Participants viewed patients’ stories and creative writings as helpful tools to enhance connectedness and learn from other experiences. They believe that patients’ stories could help other patients waiting or living with a transplant. They were enthusiastic about the development of a web platform that would bring together patients’ stories and were interested in the development of this platform and wanted to participate in future creative writing workshops. Future studies are needed to explore the impact of creative writing and patients’ stories on future TCs, TRs and LDs.
To cite this abstract in AMA style:
Laneuville L, Gallego FBallesteros, Affdal A, Gagnon-Chainey B, Brassard L, Millot P, Harel S, Mavrikakis C, Malo M, Fortin M. Kidney, Lung and Liver Transplant Patients’, Kidney Transplant Candidates’ and Living Donors’ Perspectives on the Role of Patients’ Stories and Creative Writing in Transplantation: An Exploratory Study [abstract]. Am J Transplant. 2022; 22 (suppl 3). https://atcmeetingabstracts.com/abstract/kidney-lung-and-liver-transplant-patients-kidney-transplant-candidates-and-living-donors-perspectives-on-the-role-of-patients-stories-and-creative-writing-in-tran/. Accessed May 11, 2025.« Back to 2022 American Transplant Congress