Characterizing the Experiences and Educational Needs of Patients and Caregivers During the Kidney Transplant Process
Bibliographic record
Abstract
Background: Kidney transplantation, a life-saving therapy for children with kidney disease, remains challenging to navigate for patients and families. Objective: To elucidate the experiences and educational needs of patients who have received a kidney transplant and their caregivers. Design: Qualitative descriptive study. Setting: One province in Canada (Saskatchewan). Patients: Patients who received a pediatric kidney transplant, transplant recipients and caregivers. Methods: software was used to facilitate this process. Results: Twenty-three individuals participated, including 13 caregivers (aging in range from 20's to 60's) and 10 patients who had previously received a transplant (aging in range from adolescents to 40's). Three categories emerged from their experiences: (1) the impact of the transplant on the individual (subcategories social, mental health, physical, lifestyle, returning to normal and new life perspective); (2) transplant expectations (transplant as a cure, unexpected experiences); and (3) the need for support throughout the transplant process (practical support, mental health support, healthcare support, support through shared-lived experiences, and challenges related to finding a community). Regarding education, participants identified the need for personalized, age-appropriate education delivered in digestible formats, with clear expectations, timely reinforcement, and emotional support tailored to both patients and caregivers. Limitations: Participants were recruited from a single small center in Canada. Patient participants had received their transplant at least 5 years prior to participation in the study and were reflecting on their past experiences. Conclusion: Feeling prepared for the transplant journey impacts the transplant experience and kidney transplant education can facilitate care and clarify expectations. The insights gathered from the study will help inform the development of educational resources for patients and caregivers.
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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 | 0.007 | 0.015 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.008 | 0.005 |
| Scholarly communication | 0.004 | 0.003 |
| Open science | 0.001 | 0.005 |
| Research integrity | 0.001 | 0.003 |
| Insufficient payload (model declined to judge) | 0.002 | 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".