Perspectives of Kidney Transplant Recipients, Transplant Candidates, and Living Kidney Donors on the Role of Patients’ Self-Narratives and Experiences of Creative Writing Workshops: A Qualitative Study
Bibliographic record
Abstract
Background: Kidney transplantation is the best treatment for kidney failure but is associated with medical, psychological, and existential challenges for patients. Patients' experiential knowledge can help other patients facing these challenges. Patients' self-narratives and creative writings are ways to operationalize this experiential knowledge. Creative writing has been described as a therapeutic tool for patients with chronic disease. Over the past year, we conducted creative writing workshops with kidney transplant recipients (KTRs), living kidney donors (LKDs), kidney transplant candidates (KTCs), and professional writers. During these workshops, patients were invited to explore different aspects of their experiences of their transplant or donation journey through narrative-writing, poetry, comic art, and screenwriting. Objective: The objectives of this study were to gather the perspectives of KTRs, KTCs, and LKDs on the role of patients' self-narratives and creative writing, and to collect patients' experiences of the creative writing workshops. Design: Focus groups and individual interviews. Setting: The Center hospitalier de l'Université de Montréal (CHUM) kidney transplant program. Participants: KTRs, LKDs, and KTCs attending the CHUM kidney transplant clinic between February 2020 and January 2021. Methods: We conducted 2 focus groups and 8 semi-structured individual interviews with 7 KTRs, 8 LKDs, and 5 KTCs from the CHUM between June and November 2020, before the creative writing workshops. We also conducted 10 semi-structured interviews with 5 KTRs, 1 KTC, and 4 LKDs in March 2021, after their participation in the creative writing workshops. The interviews were recorded and transcribed. Thematic and content analyses were conducted. Results: KTRs, LKDs, and KTCs had multiple significant moments to share from their transplant/donation journey. These moments were highly emotional and marked by uncertainty. The creative writing workshops were described as therapeutic by participants, because they offered a safe space for group-facilitated reflection, including a discovery and learning process, and normalization, relativization, and appreciation of the transplant/donation experience. The creative writing workshops also provided an opportunity to give back to others (helping other patients, promoting kidney donation and continuing this process in the future through the web platform). Limitations: Our participants came from a single French-speaking urban transplant center in Quebec and were highly educated. Conclusion: The study set out to capture the perspectives of KTRs, LKDs, and KTCs through the sharing of self-narratives and their participation in creative writing workshops related to their transplant or donation journey. A website was set up to publish patients' creative writings (https://recitsdudonetdelavie.lorganon.ca/les-recits/). Further study is needed to assess the website's impact on other patients. Trial registration: Not registered.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.014 | 0.017 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.002 | 0.002 |
| Science and technology studies | 0.011 | 0.010 |
| Scholarly communication | 0.006 | 0.005 |
| Open science | 0.002 | 0.007 |
| Research integrity | 0.002 | 0.004 |
| Insufficient payload (model declined to judge) | 0.004 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".