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
Notice bibliographique
Résumé
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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Comment cette classification a été obtenuedéplier
Prédiction machine sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,014 | 0,017 |
| Méta-épidémiologie (sens strict) | 0,001 | 0,001 |
| Méta-épidémiologie (sens large) | 0,001 | 0,001 |
| Bibliométrie | 0,002 | 0,002 |
| Études des sciences et des technologies | 0,011 | 0,010 |
| Communication savante | 0,006 | 0,005 |
| Science ouverte | 0,002 | 0,007 |
| Intégrité de la recherche | 0,002 | 0,004 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,004 | 0,000 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».