Patient and caregiver perspectives on mental health in children and adolescents with chronic kidney disease
Bibliographic record
Abstract
Rationale & Objective: Children and adolescents with chronic kidney disease (CKD) are at risk of depression and other mental health conditions, which can impair quality of life, the capacity for self-management and adherence to treatment, and overall health. This study aimed to describe the perspectives of patients and caregivers on mental health in children and adolescents across all stages of CKD. Study Design: Qualitative study. Settings & Participants: A secondary analysis of a consensus, multi-stage and inclusive process designed to establish core outcomes for children with CKD [Standardised Outcomes in Nephrology-Children and Adolescents (SONG-Kids)]. A total of 120 children and 250 caregivers, from 53 countries, who participated in 16 focus groups, two consensus workshops and an international Delphi survey were eligible for inclusion. Analytical Approach: We conducted a secondary thematic analysis of all qualitative data from the (SONG-Kids). Results: We identified five themes: struggling with a frail and sick identity (demoralized by a restricted lifestyle, shattered body image, victim of bullying, and descending into loneliness and isolation), worried by ongoing uncertainty about health (confronting own mortality and apprehension awaiting medical results), disappointed by narrowed vocational opportunities (unable to reach academic potential and thwarted career goals), distressed by medical trauma (traumatized by invasive procedures, and unrelenting demands of medication and treatment) and despair without adequate psychological support. Limitations: The transferability of the findings may be limited as the study was conducted in English. Conclusion: Children and adolescents with CKD may feel vulnerable, experience fear and anxiety about their prognosis and health, harbour a sense of failure with disappointment, and experience medical trauma. Improving ways to address fears and uncertainty about health, disruption to lifestyle and identity, and medical trauma in children with CKD are needed.
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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 | 0.006 | 0.012 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.003 | 0.003 |
| Scholarly communication | 0.002 | 0.002 |
| Open science | 0.001 | 0.003 |
| Research integrity | 0.001 | 0.002 |
| 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".