Quebec lung, liver and heart transplant recipients' perspectives on self-narratives and their experiences in creative writing workshops during the transplantation journey: a qualitative study.

BACKGROUND

Although solid organ transplantation is a life-saving procedure, it is also associated with numerous challenges for patients. Creative writing has been described as a therapeutic tool for patients with chronic disease. Between 2020 and 2022, we held creative writing workshops with patients and professional writers. During these workshops, patients were invited to explore different aspects of their transplantation journey through different literary styles.

OBJECTIVES

The aim of this study is to understand lung, liver and heart transplant patients' perspectives on the role of patient self-narratives and creative writing workshops during their transplantation journey, and collect testimonies on their experiences in the workshops.

DESIGN

Focus groups and individual interviews.

SETTING

The Centre hospitalier de l'Université de Montréal (CHUM) lung and liver transplant programmes and the Montreal Heart Institute (MHI) heart transplant programme.

PARTICIPANTS

Lung, liver and heart transplant recipients attending the CHUM and the MHI transplant clinic between September 2020 and August 2022.

METHODS

Before the creative writing workshop, we conducted two focus groups and individual interviews with 22 lung recipients, five liver transplant recipients and four heart transplant patients. After their participation in the creative workshop, we conducted 17 semi-structured interviews with nine lung transplant recipients, four liver transplant recipients and one heart transplant recipient (three participants participated twice in interviews). Interviews were transcribed for subsequent qualitative description analyses.

RESULTS

Most participants had previous experiences of sharing their transplant stories and considered that a web-based platform where transplant patients share their stories could be highly beneficial for future transplant patients and the public. The creative workshops were described as 'therapeutic' since they let participants express their emotions and realities. Peer support and connection to other people contributed to normalise their transplant journey and helped participants put their experiences into perspective.

CONCLUSIONS

Creative writing workshops and peer support through the sharing of self-narratives are a feasible approach that participants have described as beneficial. Future studies are needed to assess the benefits of patients' creative writings on other patients and on caregivers.